Improving the quality of life of people with disabilities in Europe

Transcription

Improving the quality of life
of people with disabilities in Europe:
participation for all, innovation, effectiveness
Proceedings of the conference
St Petersburg, Russian Federation
21-22 September 2006
Organised by the Directorate General of Social Cohesion
of the Council of Europe
under the aegis of the Russian Federation Chairmanship
of the Committee of Ministers of the Council of Europe
and the Norwegian Presidency of the Nordic Council of Ministers
French edition:
Améliorer la qualité de vie des personnes handicapées en Europe: participation pour tous, innovation,
efficacité – Actes de la Conférence
The opinions expressed in this work are the responsibility of the authors and do not necessarily reflect
the official policy of the Council of Europe.
All requests concerning the reproduction or translation of all or part of the document should
be addressed to the Public Information and Publications Division, Directorate of
Communication (F-67075 Strasbourg Cedex or [email protected]). All other
correspondence concerning this publication should be addressed to the Secretariat of the
Partial Agreement in the Social and Public Health Field, Directorate of Social Affairs and
Health.
Cover design: Graphic Design Workshop, Council of Europe
Layout: Documents and Publications Production Department (DPPD)
© Council of Europe, December 2007
Printed at the Council of Europe
Contents
Page
Introduction ...................................................................................................................................... 5
General report................................................................................................................................... 7
Programme...................................................................................................................................... 19
Welcome addresses........................................................................................................................ 29
Plenary Session I: Presentation of the Council of Europe Disability
Action Plan 2006-2015 ................................................................................................................... 41
Workshop 1: Integration of people with disabilities, including children, into society ....... 65
Workshop 2: Education, vocational training and employment of people
with disabilities .............................................................................................................................. 93
Workshop 3: Role of public authorities in promoting equal opportunities and full
participation of people with disabilities ................................................................................... 147
Plenary Session II: National experiences in improving the quality of life of people
with disabilities ........................................................................................................................... 173
Plenary Session III: Implementation of the Council of Europe Disability
Action Plan 2006-2015 ................................................................................................................. 209
Conclusions and closing ............................................................................................................. 213
Appendix 1 - St Petersburg Declaration ................................................................................... 221
Appendix 2 - Council of Europe Disability Action Plan 2006-2015 ...................................... 225
Appendix 3 - List of participants ............................................................................................... 281
3
INTRODUCTION
Full and active participation in society, equal opportunities, non-discrimination,
independent living in the local community, in short: full citizenship for all people with
disabilities. Those are the main aims of the Council of Europe Disability Action Plan
2006-2015.
Tremendous achievements have been made since 1959, when disability-related activities
first started at the Council of Europe within the framework of the Partial Agreement in the
Social and Public Health Field. The landmark 1992 Recommendation on a coherent policy
for people with disabilities has influenced disability standard-setting and policy-making at
national and European level for many years.
Based on the paradigm shift promoted by the Council of Europe, the medical model of
disability is being replaced by a social and human rights-based model: from the patient to
the citizen. The deficit approach is being replaced by a capacity approach: from disability to
ability. In order to help member states now to move from policy to practice, the Council of
Europe offers a new instrument: the Council of Europe Disability Action Plan 2006-2015.
The Plan provides a ten-year reference framework for disability policy and legislation based
on human rights and non-discrimination, a roadmap to help our member states in designing
tailor-made disability provisions that are state-of-the-art and sustainable at the same time, a
blueprint against which all present and future programmes to improve the quality of life of
people with disabilities will have to be measured. Its fifteen key action lines cover almost all
aspects of life and its five so-called cross cutting aspects look in a horizontal way at certain
groups of people with disabilities who have special requirements or face twofold
discrimination. In total, the Plan contains more than 40 objectives and more than 160 specific
actions to be undertaken by member states.
Adopted by the Committee of Ministers on 5 April 2006, it is unprecedented in history: the
first ever Disability Action Plan addressed to all member states of the Council of Europe. It
was launched at the European Conference “Improving the quality of life of people with
disabilities in Europe: participation for all, innovation, effectiveness”, St. Petersburg,
21-22 September 2006, organised by the Russian Federation Chairmanship of the Committee
of Ministers of the Council of Europe as one of its Presidency priorities, in co-operation with
the Norwegian Chairmanship of the Nordic Council of Ministers as one of their Presidency
priorities in the context of disability projects in the Baltic Sea Region and North West Russia.
The conference brought together some 250 participants from twenty-eight Council of Europe
member states, including fourteen Ministers, Vice-Ministers and Secretaries of State, and
many representatives from non-governmental organisations of and for people with
disabilities.
The proceedings of this conference contain the integral texts of the presentations and form a
useful collection of the wealth of information and ideas presented in St. Petersburg. They
constitute an indispensable reference tool when searching for topical issues. The
St .Petersburg Declaration is of particular importance when looking at the implementation of
the Action Plan by member states since it provides specific recommendations to member
states.
I would like to take this opportunity to thank wholeheartedly the Russian authorities for the
timely initiative, the perfect professional organisation of the conference and the warm and
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welcoming hospitality in St. Petersburg, and the Norwegian authorities for their generous
support of the event.
I am convinced that the Council of Europe Disability Action Plan will have a tangible and
lasting impact on improving the quality of life of people with disabilities in the Russian
Federation and in Europe.
It is also my firm belief that the Council of Europe Disability Action Plan and the UN
Convention on the Rights of Persons with Disabilities are complementary and that all
Council of Europe member states who sign and ratify the UN Convention may appreciate
the potential use of the Council of Europe Disability Action Plan as a European regional
political instrument and an operational implementation tool, which should help them to
implement the UN Convention and meet their commitments towards the world community.
Protecting and promoting the rights of people with disabilities has to be seen in a wider
context: equitable access to and effective enjoyment of human rights by people with
disabilities and respect for human diversity are key factors in determining the success of
current social, cultural, economic and political reforms in Europe and thus help to
consolidate democracy on our continent.
Alexander Vladychenko
Director General of Social Cohesion
Council of Europe
6
GENERAL REPORT
Improving the quality of life of people with disabilities in Europe: participation
for all, innovation, effectiveness
Mr Nils-Petter KARLSSON,
Assistant Professor in Social Studies,
Telemark University College, Porsgrunn,
Norway
Executive summary
The Council of Europe Disability Action Plan2006 – 2015 was adopted by the Committee of
Ministers in April 2006. The plan focuses on improvement of the quality of life for people
with disabilities in Europe and introduces 15 action lines that serve as a roadmap for
implementation in the 46 Council of Europe member states. The plan utilises a human
rights-based approach to disability, emphasising participation, co-operation between
governments, civil society and NGOs, and supporting a trend towards community living for
people with disabilities. The Disability Action Plan is a manifestation of the paradigm shift
from patient to citizen, focusing on the resources and participation of people with
disabilities.
The Russian presidency of the Council of Europe, in co-operation with the Norwegian
presidency of the Nordic Council of Ministers, arranged a conference in St Petersburg,
Russia 21 - 22 September 2006. The aim of this conference was to launch the Council of
Europe Disability Action Plan, to learn about its contents, to discuss implementation of the
Action Plan at national level and to reach agreement on a joint declaration. Around
200 participants took part in plenary sessions and work shop seminars. Together they
contributed to a conference characterised by an active exchange of experiences and concrete
discussions on the implementation of the Action Plan.
The St Petersburg Declaration was adopted by the delegates on 22 September 2006.
Recommending that governments of the Council of Europe member states actively
implement the Disability Action Plan, the declaration calls for a cross-sectoral approach to
ensure participation, accessibility and equal opportunities for people with disabilities. To
enhance international follow-up of the national implementation of the Action Plan, a
European Co-ordination Forum will be established as from 2007.
General report
By invitation from the Russian Federation and the city of St Petersburg, the conference took
place in the brand new Pushkin Rehabilitation Centre. The first day of the conference was
chaired by the Minister of Health and Social Development of the Russian Federation,
Mr Mikhail Zourabov.
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Opening speeches
In his opening speech, Mr Zourabov drew attention to several initiatives which have taken
place during the last few years with the aim of improving living conditions for people with
disabilities in the Russian Federation. In addition to new legislation, he emphasised efforts
to build accessible housing and increase the level of support for people with disabilities. In
the period 2001 – 2008 financing of services for people with disabilities will increase 8 times
in the state budget.
This gives ample evidence that the government is making serious efforts to comply with
modern standards and Council of Europe recommendations. This trend will continue, and
be strengthened by the new Council of Europe Disability Action Plan and the new
Convention on the Rights of Persons with Disabilities, recently adopted by the UN.
Mr Zourabov emphasised active participation from the organisations for people with
disabilities and said that the Government of the Russian Federation was committed to
implementing the new Council of Europe Disability Action Plan. He regarded this
conference as a valuable and positive launch of the Action Plan and said that legislative
work to prepare compliance to its requirements was scheduled to start next year. The
Minister concluded by expressing hope of a successful conference.
Ms Lyudmila Kostkina, Deputy Governor of St Petersburg, welcomed the conference to the
city and was proud to present the new Pushkin Rehabilitation Centre as the venue. Finding
good solutions to social problems was a high priority task in St Petersburg and the
rehabilitation of people with disabilities was a major element of this effort. She found the
Council of Europe Disability Action Plan a useful tool for implementation work in the city
and mentioned the sharing of experiences and implementation of international standards as
particularly important.
In her opening address, Ms Maud de Boer-Buquicchio, Deputy Secretary General of the
Council of Europe, noted that the definition of “disability” varied within the Council of
Europe member states, and that, consequently, the number of people with disabilities was
difficult to establish. Using different definitions, statistical sources point at figures of 2-25%
of the population having disabilities, whereas recent WHO figures estimate the figure to be
10% in Europe. EU household panels indicate 15%. Disability is not evenly distributed in the
population with a marked increase with higher age.
The issue of disability is also a matter of perception and attitudes – it concerns the way we
are seen and treated. Even though discrimination on the grounds of disability is prohibited,
technical, physical and attitudinal barriers exist. The Council of Europe Disability Action
Plan is designed to challenge this. It supports the paradigm shift from patient to citizen, and
offers a flexible tool for all member states to develop national action plans within the
framework of its 15 action lines. Ms Boer-Buquicchio underlined the Action Plan’s special
focus on combating twofold discrimination in groups such as children, girls/women, people
with a high need of assistance, the elderly and people from migrant communities. In
addition, she emphasised the goal that everyone should be given possibilities to reach their
full potential and that active participation is a fundamental prerequisite to attain this. The
Council of Europe has worked in close co-operation with the UN process of creating the new
Convention on the Rights of Persons with Disabilities. The two documents are
complementary and will form a powerful background for national action.
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In conclusion, she thanked the Russian Federation for its active support both in putting the
theme of disability high on their agenda for the Council of Europe presidency, as well as
hosting this conference. Working to improve the living conditions for people with
disabilities is not charity, but rather an investment in creating a better society.
Ms Laila Gustavsen, State Secretary, Ministry of Employment and Social Inclusion,
Norway/Presidency of the Nordic Council of Ministers, co-chaired the conference.
Ms Gustavsen was happy to see the realisation of the conference as a joint arrangement
between the Russian presidency of the Council of Europe and the Norwegian presidency of
the Nordic Council of Ministers. She hoped this was merely the beginning of an active the
co-operation between the two organisations; co-operation characterised by an open-minded
exchange of views, firmly anchored in the values of equal opportunities and participation
for all people. Ms Gustavsen expressed the Norwegian vision of equal opportunities for all
citizens as a case of “not we and them, but us”. She found that both this vision and the
means with which to reach it were readily compatible with the action lines of the Council of
Europe Disability Action Plan. Emphasising a strong childrens’ rights perspective, the
Norwegian approach includes active participation for all in planning and decision-making
processes, building a society accessible for all through Universal Design, creating
employment possibilities and ensuring economic and social security. During the Norwegian
Council of Europe presidency in 2004, a seminar on Human Rights - Disability - Children
was held in Strasbourg. Ms Gustavsen regarded this St Petersburg conference as very
important in continuing and widening the process of improving the quality of life for people
with disabilities in Europe.
NGOs are major stakeholders in the process to create better conditions for people with
disabilities. Mr Aleksandr Neumyvakin, Chairman of the Russian Federation Association of
the Blind, underlined this aspect in his opening speech. He regarded the triangular cooperation between government, business communities and NGOs as vital in order to obtain
results for people with disabilities. New programmes in this field should give access to
information, possibilities for participation and employment. Mr Neumyvakin stated that a
constructive dialogue had been established in the Russian Federation and that he found the
Council of Europe Disability Action Plan to be an important and useful tool in developing
even better co-operation in the future. He especially focused on the Action Plan’s paradigm
shift; from patient to citizen. Despite obstacles and challenges with financing and the status
of people with disabilities, Mr Neumyvakin expressed great optimism for the continued
building of partnerships. He referred to personal commitment from government level as an
important prerequisite for successful co-operation, and was happy to confirm that such
support was available in the Russian Federation.
Mr Thomas Hammarberg, Council of Europe Commissioner for Human Rights found the
launching of the Council of Europe Disability Action Plan exceptionally well-timed,
referring to the presentation of the agreement on the UN Convention on the Rights of People
with disabilities taking place almost at the same time. Mr Hammarberg found that this
marked an important possibility to change high level discussions from political goals to
practical implementation and that the participation of NGOs greatly enhanced the potential
impact of the Disability Action Plan. Furthermore, he stated that living conditions for people
with disabilities in Europe will be the highest priority of the Human Rights Commissioner in
the years to come.
Summing up the opening session, Mr Zourabov stressed that a common understanding of
the problems and challenges that we face is essential. The Minister underlined the
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importance of co-operation both on a national and international level, between
governments, NGOs and other stakeholders. In this respect, he regarded the co-operation
between the Russian presidency of the Council of Europe and the Norwegian presidency of
the Nordic Council of Ministers as an excellent example of international political
collaboration to ensure participation and ownership of the new Council of Europe Disability
Action Plan.
The launch of the Council of Europe Disability Action Plan
The human rights perspective
The human rights perspective is a distinctive characteristic of the work of the Council of
Europe. Consequently, an introduction of the Council’s new Disability Action Plan was
made by the Council of Europe Commissioner for Human Rights, Mr Thomas Hammarberg,
who in his keynote speech elaborated on the human rights context of the plan. Stating that
there is no lack of relevant and, indeed, modern legislation and declarations, he said that
there is a great need for implementation. Through the advent of international agreements
like the UN Convention on the Rights of Persons with Disabilities and the Council of Europe
Disability Action Plan, attitudes have begun to change. Nevertheless, ratification of
important agreements like the revised European Social Charter (article 15) and the Human
Rights Declaration protocol 12 is still lagging behind.
Attitudes change slowly. This aspect is, however, of the highest importance when it comes
to supporting the right of people with disabilities to participate fully in society.
Implementation work must contain:
–
Information efforts with both general education and specific, mandatory education for
staff and relevant professionals.
–
A consciousness for the use of phrases and words to describe persons with disabilities.
The word “invalid” sends an unfortunate message, and there is a distinct difference in
approach when one talks about “a child with disabilities” instead of “a disabled child”.
–
An effort to close down large institutions and replace their services with a more familylike environment, utilising normal services open to all citizens.
–
Implementation of Universal Design principles making society adjust to the individual
rather than the other way around.
–
Dialogue with active and constructive NGOs to ensure optimal service delivery.
–
The use of timeframes and benchmarks to measure and adjust policies.
–
Local level participation and influence.
–
Follow-up and evaluation of measures.
Last, but not least, Mr Hammarberg suggested the use of a national Ombudsman office to
enhance communication between partners and to secure the rights of people with
disabilities on an independent basis.
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The action lines
A major feature of the Council of Europe Disability Action Plan is the 15 action lines
designed to be adaptable implementation tools for the member states. The action lines focus
on accessibility and equal opportunities to bring about participation and social inclusion.
Key objectives are the principles of Universal Design, mainstreaming and quality services.
Mr Hans Sluiter chaired the drafting group of the Disability Action Plan. In his presentation
he underlined that human rights objectives had been essential in elaborating the Disability
Action Plan. The scope of the plan, covering some 100 million inhabitants in the member
states, makes this aspect fundamental. The 15 action lines are designed to assist in creating
sustainable actions even though the financial and political ability of the member states
greatly vary. Awareness-raising, combating discrimination and stigmatisation underpin the
plan. In addition, Universal Design, education, employment and community living are
primary objectives. The plan as a whole is a manifestation of the paradigm shift from patient
to citizen, an answer to the challenge of combating social exclusion through attitude
changing.
The action lines are complemented by cross-cutting aspects, acknowledging that many
people with disabilities in Europe face possible discrimination not only from disabilities, but
also for other reasons, for example on the grounds of gender, age, race or the need for a
higher level of support. It is imperative that policies are created to cover – cut across –
several action lines in order to remove barriers and help individuals achieve their full
potential. Mr Sluiter concluded by expressing hope for, and confidence in, the member
states’ ability to use the Disability Action Plan as an effective tool to improve the quality of
life for people with disabilities.
A Nordic approach
Focusing on participation and inclusion of children with disabilities, Professor
Rannveig Traustadóttir of the University of Iceland presented policies and the development
of service provisions from the 1970s to the present day in Nordic countries. She concentrated
on inclusion policies covering family, education and leisure time activities, and showed that
a trend on integration into ordinary society through community living is a common trait in
the Nordic countries in this period. Policies on de-institutionalised living have been
supplemented by legislation and services to support families and family-like environments
have evolved.
Ms Traustadóttir asserted that these policies have been successful in improving the quality
of living for children with disabilities. A relatively high degree of participation in society has
been accomplished and, perhaps most importantly, children with disabilities have become
visible and a natural part of everyday society.
The NGO perspective
Mr Stefan Trömel of the European Disability Forum (EDF) started his presentation using the
well-known slogan “Nothing about us without us”. The EDF has been a member of the
working group which has drafted the Council of Europe Disability Action Plan and has had
a significant impact on the content, as well as securing an important endorsement by the
European disability movement. Mr Trömel emphasised in particular that the Action Plan is
embedded in a human rights approach to disability and, as such, exemplifies the paradigm
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shift from patient to citizen. Furthermore, he pointed to the complementarity between the
Action Plan and the new UN Convention on the Rights of Persons with Disabilities, making
both instruments useful tools for policy-making and implementation in the member states.
From the EDF point of view, a major challenge will be to ensure that the Action Plan will
mean a real difference in the lives of people with disabilities in Europe. The presence of
people with disabilities in the decision-making processes is an important aspect of this and
Mr Trömel pointed out that the audience at the St Petersburg conference was characterised
by a strong governmental participation, but with very few people with disabilities among
them. Referring to the process of drawing up the UN Convention on the rights of Persons
with Disabilities where government delegations also included significant numbers of people
directly concerned by the Convention, he noted that this has to change in order to secure a
successful implementation in Europe. In conclusion, Mr Trömel urged the conference
participants to include the full name of the Action Plan in the St Petersburg Declaration,
planned to be adopted during the last day of the conference. He felt this would duly
underline the human rights approach as well as the emphasis on improved quality of life for
people with disabilities.
Questions and discussion
The morning session was ended by questions to the speakers.
Mr Michael Hancock, member of the Council of Europe Parliamentary Assembly, felt that
the Action Plan was well made, but feared that its lack of benchmarking and coercive
measures for states that do not comply would make it a weak instrument. Also the Plan’s
lack of financial instruments made it too much dependent on national budget priorities.
Mr Trömel of the EDF agreed on this, and said that the national responsibility to create
national action plans was a weakness in this respect. They both feared that this would result
in large differences in service provision and levels between the member states. In response
to this, it was asserted that the large differences between the member states in itself made it
difficult to establish relevant benchmarking and that national responsibility for the quality
of life of citizens could not be transferred to an international level. Mr Lars Lööw of the
office of the Swedish Handicap Ombudsman commented on the human rights aspect of the
Ombudsman institution, encouraging member states to establish this type of control
mechanism to ensure implementation and compliance with national and international
obligations.
Minister Zourabov, in conclusion, commented on the conditions for people with disabilities
in the Russian Federation. Pointing at differences between the Council of Europe member
states in political and financial conditions over time, he made it clear that the Russian
Federation was making progress and displayed a strong will to work towards social
inclusion for all its citizens. The Minister said that the Council of Europe Disability Action
Plan constituted an important guideline for this work and that it would be used in this
process. Finally, Mr Zourabov thanked all speakers for their sincere attitude and
contribution to the conference.
Three parallel workshops
As a major part of the conference programme, three parallel workshops were organised. The
overall objective of these was to focus on specific aspects of implementation of the Disability
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Action Plan. Furthermore, the workshop, participants were encouraged to contribute to the
St Petersburg Declaration, to be adopted by the delegates the following day.
Workshop 1 dealt with the Integration of people with disabilities, including children, into
society. The workshop recommended a gradual but purposeful development towards
community living, taking special care to facilitate the inclusion of children and youth with
disabilities into mainstream service provision and participation. A special emphasis was put
on participation in culture, politics and sports, noting in particular the inspiration and
impact of the Paralympic movement.
Workshop 2 concentrated on Education, vocational training and employment of people
with disabilities. Importance was placed on individual support schemes to ensure the
development of each person’s potential and abilities, whether in education at all levels,
vocational training or work. Pointing at an anti-discriminatory approach, the responsibility
of governments, employers and NGO’s to create positive conditions to fulfil this was
underlined.
Workshop 3 looked at the Role of public authorities in promoting equal opportunities and
full participation of people with disabilities. This workshop highlighted the responsibility
of authorities at central and local level in the member states to provide the necessary
conditions for equal participation in society. Using anti-discriminatory legislation as a tool to
guarantee full rights of participation, states are urged to instruct all levels of government to
actively co-operate with NGOs and social partners to improve the living standards of people
with disabilities.
Rapporteurs were assigned to each workshop, and their reports are included in these
proceedings.
The second day of the conference focused on the implementation of the Council of Europe
Disability Action Plan. As a background to this, the morning session presented national
experiences in improving the quality of life for people with disabilities, featuring
contributions from several Council of Europe member states. The last day of the conference
was chaired by Ms Laila Gustavsen, State Secretary of the Norwegian Ministry of Labour
and Social Inclusion and representative of the Presidency of the Nordic Council of Ministers.
National experiences in improving the quality of life of people with disabilities
The Council of Europe member states have many varied approaches to their work in the
field of disability policy. This set the background for a session on the exchange of national
experiences to inspire participants and create a base for the following discussions on
implementation.
Russian experiences
The city of St Petersburg, represented by Deputy Chair of the Committee on Labour and
Social Security, Ms Galina Kolosova, presented an overview of social conditions in the city,
as well as current plans and initiatives. With an official population of 4.58 million
inhabitants, approximately 16% are considered as having disabilities. The number of people
with disabilities under the age of 16 is estimated at 2.2%, people of working age 17.5%, and
up to 80% of the elderly. Ms Kolosova described a comprehensive system of services and
systems, ranging from transportation, promoting accessibility issues in city planning and
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regular medical checkups for all persons with disabilities, to local grants for families who
wanted to keep children with disabilities at home and special housing for people with
disabilities, unique to St Petersburg in the Russian Federation.
No less than 127 000 persons have individual plans connected to social rehabilitation.
Ms Kolosova presented the brand new Pushkin Rehabilitation Centre – the conference venue
– as a model to be followed in the future work of the city of St Petersburg. Special emphasis
was placed on creating structures to enhance co-ordination of efforts, and to secure
interaction between the different agencies of the city so that the interests of people with
disabilities were taken care of.
Mr Gheorghiy Reva of the Tchita Oblast gave a complementary glimpse of the Russian
Federation, describing conditions and plans in a small region with relatively few
inhabitants. Being chair of the Committee of Social Security in the Oblast, Mr Reva put
particular emphasis on utilisation of resources. Not only physical resources such as
agriculture, small businesses and art, but also personal resources and abilities must be
utilised in order to create personal self-esteem, especially for people with disabilities.
Systems for early detection of disabilities together with ample services were important to
create good living conditions for people with disabilities. Tight budgets were often an
obstacle in ensuring the equal rights and opportunities guaranteed in the Federal
Constitution, but it was important to continue to give high priority to this group.
Nordic experiences
Disability policy in the Nordic countries has a lot of aspects in common, one of them being a
strong interrelationship with other policy areas, for example employment, education and
accessibility. Using Norway and Sweden as examples, Professor Jan Tøssebro of the
Norwegian University of Science and Technology, and Chair of the National Council on
Disability, chose the aspects of deinstitutionalisation and accessibility as his points of
departure for his presentation.
Replacing institutions with community care for people with disabilities was a distinct trend
in the Nordic countries in the 1980s and 1990s. This is especially true for persons with
intellectual disabilities, but similar developments took place also in child protection services,
old age welfare services, and psychiatry. The main reasons for this choice were to give
residents a better quality of life, and to improve possibilities for participation and
integration into societal life. A strong motivating force was the civil rights movement,
asserting that segregation was stigmatising. In later years, several other countries have
followed suit, and community living is now the standard rather than a new reform.
Research shows that the change to community living indeed has improved living conditions
for people with disabilities. In addition to improved housing and better possibilities of
independent living, family support has increased despite widespread scepticism from the
start. Results from Norway and Sweden suggests that participation by people with
intellectual disabilities in employment, leisure time activities and spending time with friends
has not increased, but remained at the same level as before. The current impression is that
the reforms, as carried out in Norway and Sweden, are very successful, but the process is not
yet finished.
If transfer to community care was a characteristic trait of Nordic social policy in the 1990s,
one may call accessibility the major trend in our decade. The notion of Universal Design has
had a large impact on development of policies in areas of accessibility requirements for
14
building codes, transportation, and anti-discriminatory legislation. In fact, it has become a
major mainstreaming element in policy-making with the aim of securing equal opportunities
and full participation for people with disabilities. Simultaneously, competence on
accessibility issues is increased, and focus is placed on society adjusting to the individual
rather than the other way around. In conclusion, Mr Tøssebro argued that the issue of
accessibility is directly linked to implementation of policies like the Council of Europe
Disability Action Plan, and that its success is dependent on ability and will to create a
society for all.
Portuguese experiences
Portugal has started a four-year programme on policies of integration of people with
disabilities. Until 2010, € 300 million were allotted to enhance accessibility, integration and
information, said Ms Idalia Moniz, Secretary of State for Rehabilitation in the Ministry of
Labour and Social Solidarity. With the goal of improving the overall standard of living for
people with disabilities, several different measures are introduced. Key words are:
– co-operation, with a permanent national council with government and civil society
representation;
– raising public awareness through campaigns designed to support attitude changes;
– creating partnerships between public and commercial sector to enhance policy
implementation.
Ms Moniz emphasised the necessity to seek for solutions at the political level, and to use
partnerships as a tool to ensure comprehensive implementation. In this respect, she felt that
the action lines of the Council of Europe Disability Action Plan would constitute a useful
tool in creating a national action plan.
Romanian experiences
Ms Gabriela Dobre, Senior Counsellor of the National Authority for Persons with Handicap
in Romania, found the principles and goals of the Romanian policy concerning people with
disabilities to be in accordance with the Council of Europe Disability Action Plan. She
particularly underlined that Romanian authorities were working to ensure full participation
of all relevant partners in the process of creating a national action plan. Guiding principles
of the process will be freedom of choice, independent living, and quality of life.
The total population of people with disabilities in Romania is estimated at 469 000.
Ms Dobre told the audience that even though Romania had a tradition of institutionalised
care, this had changed dramatically during the last decade. Thus, in 2006, only 4% of people
with disabilities lived in institutions. Approximately 50 000 persons were employed in the
planning and provision of services to people with disabilities. With the strong emphasis on
community living, Ms Dobre felt that Romania had a good background for constructive
work with the national Action Plan to improve the living conditions for people with
disabilities.
Implementation in Hungary
A new national programme of disability affairs has just been adopted in Hungary. The four
main priorities of this programme were:
–
equal access and opportunities
–
incentive employment
15
–
–
establishment of institutions for complex rehabilitation
improving quality of community based social services.
Mrs Edith Rauh, Undersecretary of State of Equal Opportunities from the Ministry of Social
Affairs and Labour, described the process that had led to this programme. In the process,
emphasis had been given to integration of principles in laws, regulations and practices,
promotion of comprehensive implementation of the Council of Europe Disability Action
Plan at the national level, and widespread dissemination of the Action Plan and its
principles to all parties concerned. Consequently, a plan of shared responsibility between
partners concerned had been established, and the document itself translated into several
languages, including Braille, sign language and an easy-read version.
Spanish experiences
Mr Pascal De La Parte observed that Spanish processes to improve living conditions for
people with disabilities moved along the same lines as those previously presented at the
conference. In Spain, this implies that a concept of universal accessibility was fundamental,
and that the establishment of autonomous life for people with disabilities was the goal for
the national integration efforts. Moreover, the social dialogue between relevant societal
partners was essential. Interestingly, Spain had introduced a sanctions scheme that allowed
punitive steps to be taken in the event of persons, authorities or businesses being found
guilty of violations of relevant legislation, for example anti-discriminatory provisions. This
sanctions scheme was an integrated part of legislation designed to secure equal
opportunities and full participation for people with disabilities in Spain.
Implementation of the Council of Europe’s Disability Action Plan2006 – 2015
Many speakers commented on the implementation process in the member states as a crucial
element of the Disability Action Plan. The recommendations from the workshops strongly
supported this. Thus, the last part of the conference concentrated on the way forward.
A politician’s view of full social inclusion of people with disabilities
Mr Michael Hancock is a member of the Parliamentary Assembly of the Council of Europe,
as well as a Member of Parliament in the United Kingdom. He addressed the need to
mobilise political power in order to create change, and focused on the power professionals
hold to force politicians to listen, understand – and act. He found it quite ironic that the
biggest lobby currently in Britain was the society to prevent cruelty against animals, while
one would expect that several other issues, including the quality of life for people with
disabilities, should be more visible.
Change is needed to improve the quality of life for people with disabilities in Europe. An
attitude change is called for; changes need to be made in budgets, legislation and in the
public perception of this group of people. Referring to the Council of Europe Disability
Action Plan, Mr Hancock found the plan well designed, but lacking in indicators to be
measured against, and resource allocation provisions. A successful national implementation
of action plans would require political will, active professionals utilising proper advocacy
skills – and communication between all relevant partners.
16
Conclusions
Ms Viveca Arrhenius of the Finnish Ministry of Social Affairs and Health is the Chair elect
(2006–2007) of the Council of Europe Committee on the Rehabilitation and Integration of
People with Disabilities (CD-P-RR). Referring to the Malaga Ministerial Declaration
“Progressing towards full participation as citizens” of 2003, and the ministerial adoption of
the Council of Europe Disability Action Plan in April 2006, she found that the Action Plan
represented a politically well-founded practical tool for implementation in the member
states. Ms Arrhenius identified four major steps to enhance national implementation:
–
Identifying national status. Finland recently evaluated its policies towards people with
disabilities using the Action Plan and other relevant policy documents as blueprints. Ten
areas were identified as needing improvement, among them human rights and nondiscrimination.
–
Building up competence at the national level, focusing on a holistic approach towards
disability.
–
Ensuring effective structures for co-operation and consultation, and create an ultimate
co-ordination responsibility at national level.
–
Establishing procedures on follow-up and reporting back to the Council of Europe.
There was a need for a body for concerted action on disability issues at the European
level.
The process of creating the UN Convention on the Rights of Persons with Disabilities has
shown the importance of international co-operation and active NGO participation in this
field. The Council of Europe Disability Action Plan has the same potential for active cooperation. In 2007, Finland will have the presidency of the Nordic Council of Ministers. In
the health and social sector, the priorities of the Finnish presidency will be on children, older
persons, and persons with disabilities. A conference on Disability and Ageing will be
organised during 2007. Referring to the joint co-operation between the Council of Europe
and the Nordic Council of Ministers in organising this conference, Ms Arrhenius predicted a
continued, active dialogue and co-operation between the two organisations.
Mr Alexander Vladychenko, Director General for Social Cohesion in the Council of Europe,
called the conference a very successful launch of the Disability Action Plan. This has been
greatly enhanced by the Russian presidency of the Council of Europe and its decision to give
the field of disability a high priority. In summing up, Mr Vladychenko identified three
aspects of the conference making it unique:
–
The conference gave information on the Action Plan and its background, especially on
how basic principles have been translated into specific objectives and how it constitutes
a flexible framework for implementation in the member states.
–
In addition, an important achievement of the conference was the St Petersburg
Declaration, expected to be adopted at the closing of the last day. The declaration refers
to key principles of the Action Plan, and gives recommendations to the governments on
future disability policies. Another achievement of the conference was the creation of a
base for the translation and promotion of the Action Plan, to be done by the member
states.
17
–
Implementation of the Action Plan in the member states was crucial. Although this was
the responsibility of the member states themselves, the conference had underlined the
importance of international follow-up. In response to this, the European Co-ordination
Forum on the Council of Europe Disability Action Plan 2006 – 2015 had been established
as of 1 January 2007. The Forum will meet once a year to oversee promotion,
implementation and follow-up of the Disability Action Plan. The over-reaching goal of
the Action Plan was that in ten years time, the quality of life for people with disabilities
in Europe should be radically improved!
Mr Vladychenko wanted the Council of Europe Disability Action Plan to play an active role
in the implementation of the United Nations Convention on the Rights of Persons with
Disabilities in the European region, using the Co-operation Forum as a support in this
process through its pan-European composition. On a smaller geographical scale,
Mr Vladychenko expressed hopes of continued co-operation with the Nordic Council of
Ministers, citing the active contributions of this organisation of the conference.
At this point, the Chair Ms Laila Gustavsen, presented the draft for the St Petersburg
Declaration, revised in accordance with the contributions of the workshops of the previous
day. On the Chair’s proposal, the delegates of the conference unanimously adopted the
St Petersburg Declaration (Appendix 1).
Closing the conference, Secretary of State and Deputy Minister of Health and Social
Development of the Russian Federation Ms Liubov Glebova, found that the conference had
accomplished its mission. The Disability Action Plan constitutes a comprehensive
framework and a useful and flexible tool for implementation, and the adoption of the
St Petersburg Declaration with its combination of political intent and practical basis has
great importance for the national implementation. She expressed satisfaction with the frank
discussions both in plenary sessions and in the workshops, and said that the member states
are ready to work to achieve improved quality of life for people with disabilities in Europe.
18
PROGRAMME
Scope and objectives
Overall aims:
1.
To launch the Council of Europe Disability Action Plan which aims to improve the
quality of life, inclusion and active participation of people with disabilities in society,
and to strengthen equal opportunities and non-discrimination.
2.
To develop international co-operation at governmental and non-governmental level.
3.
To develop practical recommendations to national authorities in order to promote
good practices at national level and to increase co-operation with civil society.
Expected outcome:
Greater awareness of the need to adopt a strategic and integrated approach to disability
policies by implementing the Council of Europe Disability Action Plan, in which
transnational exchange of knowledge and co-operation play a vital part. The conference will
adopt a declaration including practical recommendations. Proceedings will be published
after the conference.
Participants:
Governmental and non-governmental experts in disability issues (for example policy
makers, parliamentarians, academics, persons with disabilities and/or organisations
representing them) from national, regional and local levels in Europe.
Exhibition
All participants are kindly invited to visit the exhibition on the 3rd floor of Pushkin
Rehabilitation Centre, particularly during coffee and lunch breaks.
19
Improving the quality of life of people with disabilities in Europe: participation for all,
innovation, effectiveness
European Conference
St Petersburg, Russian Federation
21-22 September 2006
Under the aegis of the Russian Federation Chairmanship of the Committee of Ministers of
the Council of Europe and the Norwegian Presidency of the Nordic Council of Ministers,
this Conference is organised by the Directorate General of Social Cohesion of the Council of
Europe, in co-operation with the Norwegian Ministry of Labour and Social Inclusion and the
Ministry of Health and Social Development of the Russian Federation
Chairperson
Mr Mikhail ZOURABOV
Minister of Health and Social Development
Russian Federation
Vice - Chairperson
Ms Laila GUSTAVSEN
State Secretary
Ministry of Employment and Social Inclusion
Norway, Presidency of the Nordic Council of Ministers
General Rapporteur
Mr Nils-Petter KARLSSON
Assistant Professor in Social Studies
Telemark University College
Porsgrunn, Norway
Venue
Villa Pushkin
Centre for Social Rehabilitation of People with Disabilities
Boulevard A. Tolstogo 31
Pushkin, Russian Federation
Interpretation
English, French, Russian
Fees
No registration fees charged
20
Contact
Ms Déborah GRETENER / Ms Katie STEPHENS
Directorate General III – Social Cohesion
Council of Europe
F-67075 Strasbourg
Fax: +33 3 88 41 27 26
E-mail: [email protected]; [email protected]
Internet: www.coe.int/soc-sp
12:00 – 22:00
20 September 2006
Registration in the entrance hall of Hotel Poulkovskaya
21 September 2006
08:00
Departure from Hotel Poulkovskaya by coach to the Conference venue:
Pushkin Rehabilitation Centre
08:30 – 09:00
Registration of participants at the Pushkin Rehabilitation Centre
09:00 – 09:30
Visit of Pushkin Rehabilitation Centre
Opening Session
Plenary Session:
Villa Pushkin, Conference room “Winter Garden”, 4th floor
09:30 – 10:00
Welcome addresses
Mr Mikhail ZOURABOV
Minister of Health and Social Development
Russian Federation
Ms Ludmilla KOSTKINA
Vice-Governor of St Petersburg
Ms Maud de BOER-BUQUICCHIO
Deputy Secretary General of the Council of Europe
Ms Laila GUSTAVSEN
State Secretary
Ministry of Employment and Social Inclusion Norway
Presidency of the Nordic Council of Ministers
Mr Thomas HAMMARBERG
Council of Europe Commissioner for Human Rights
Mr Aleksandr NEUMYVAKIN
Chairman of the Russian Federation
Association of the Blind
21
Plenary Session I:
Presentation of the Council of Europe Disability Action Plan 2006-2015
10:00 – 10:20
The human rights context – keynote speech
10:20 – 10:50
Key action lines
Mr Hans SLUITER
Chair of the Drafting Group of the Council of Europe Disability Action
Plan
10:50 – 11:10
A Nordic approach to participation and inclusion of children with
disabilities
Ms Rannveig TRAUSTADÓTTIR
Professor, Faculty of Social Science, University of Iceland and President
of the Nordic Network for Disability Research, Reykjavik
Iceland
11:10 – 11:30
Coffee break in lobby – 2nd and 3rd floor
11:30 – 11:50
The NGO perspective
Mr Stefan TRÖMEL
European Disability Forum (EDF)
11:50 – 12:30
Questions to the panel of speakers and discussion
12:30 – 14.30
Lunch at the restaurant « The Russian House », Malaya str. 3, Pushkin
Parallel Workshops: Workshop 1: Integration of people with disabilities, including children, into
society
Chair:
Mr Bjørn BREDESEN, Deputy Director General, Ministry of Children
and Equality, Oslo, Norway
First Vice-Chair:
Ms Sophie JACQUOT-GAUTUN, Chair of the Council of Europe Ad
Hoc Group of Experts on Community Living (Deinstitutionalisation) of
Children with disabilities (P-RR-CLCD), Head of Office for children
with disabilities, Ministry for Solidarity, Health and Family, France
Second Vice-Chair: Mr Pavel ROJKOV, President of the Executive Committee, First ViceChair of the Russian Federation Paralympics Committee
Rapporteur:
Professor Hilary BROWN, Professor of Social Care, Canterbury Christ
Church College, United Kingdom
14:30 – 15:00
Universal Design as a strategy to promote integration within the
community
Mr Sigmund ASMERVIK, Professor in Spacial Planning, Norwegian
University of Life Sciences (UMB), Ås, Norway
22
15:00 – 15:30
Sport, culture and other leisure activities as a strategy to promote the
integration of people with disabilities
Mr Igor VIKHODETS, Head of Division of the Federal Sports Agency
Rossport, Russian Federation
15:30 – 16:00
16:00 – 16:30
Good care for the disabled child also depends on parents’ ability to take
care of themselves as a couple
Ms Marianne BIE, Family Therapist and Clinical Nurse Specialist,
Bærum Outpatient Clinic for Child and Youth Psychiatry, Bærum,
Norway
16:30 – 19:00
20:00
Dinner hosted by the Ministry of Health and Social Development of the
Russian Federation and the Government of St Petersburg in the “Rose
Pavilion” of Pavlovsk Museum
Parallel Workshops: Workshop 2: Education, vocational training and employment of people with
disabilities
Chair:
Dr Hartmut HAINES, Chair of the Council of Europe Committee on the
Rehabilitation and Integration of People with disabilities, (CD-P-RR),
Ministerial Adviser, Federal Ministry of Labour and Social Affairs,
Germany
First Vice-Chair:
Mr Pavel PANKRATOV, Head of the Federal Agency on Employment,
Russian Federation, St Petersburg
Second Vice-Chair: Mr Inge OVESEN, Director,
Nordic Co-operation on Disability
Rapporteur:
Ms Ellinor Joan SUNDSETH, Head of the Secretariat of The Norwegian
State Council on Disability, Norway
14:30 – 15:00
Transportation by coach to the rehabilitation centre on Vassilyevskiy
Ostrov, the 26th line, building N°9, St Petersburg
15:00 – 15:20
Adapted education for all
Ms Kari BRUSTAD, Deputy Director General, Ministry of Education
and Research, Oslo, Norway
15:20 – 15:40
Vocational rehabilitation and training
Mr Lev SYTIN, Director of the Rehabilitation Hospital in Novokusnezk
/ Oblast, Kemerowo / Sibiria, Russian Federation
Mr Nikolay AGARKOV, Director of the Vocational Training Centre in
Novokusnezk / Oblast, Kemerowo / Sibiria, Russian Federation
23
15:40 – 16:00
Employment of disabled people at Ford of Europe - role model
for European industries
Dr Erich KNUELLE, Senior Medical Officer, Department Manager, Job
Planning and Rehabilitation, Ford of Germany
16:00 – 17:00
Site visit, including coffee break
17:00 – 17:20
Employment of people with disabilities – current practices
Mr Pavel PANKRATOV, Head of the Federal Agency on Employment,
Russian Federation
17:20 – 17:35
Mr Boris BELAVSKY, Federal Ministry of Education, Moscow, Russian
Federation
17:35 – 19:00
20:00
Parallel Workshops: Workshop 3: Role of public authorities in promoting equal opportunities and
full participation of people with disabilities
Villa Pushkin, Conference room, 2nd floor
Chair:
Ms Liubovi GLEBOVA, State Secretary, Deputy Minister of Health and
Social Development, Russian Federation
First Vice-Chair:
Ms Terttu SAVOLAINEN, State Secretary, Ministry of Social Affairs and
Health, Finland
Second Vice-Chair: Ms Liudmilla KOSTKINA,
Rapporteur:
Mr Andrey PANOV, Deputy Director of the Department of Social
Protection Development, Ministry of Health and Social Development of
the Russian Federation
14:30 – 15:00
Legal framework and legislative development
Mr Marc MAUDINET, Director, National Centre for Studies and
Research on Disability and Social Misfit (CTNERHI), Paris, France
15:00 – 15:20
Essential policy elements
15:20 – 15:40
Role of local public administration in improving access of people with
disabilities to public spaces and infrastructures
Ms Natalia EVDOKIMOVA, Chairperson of Standing Commission on
Social Policy of Legislative, Assembly of the City of St Petersburg
24
15:40 – 16:00
16:00 – 16:30
Role of NGOs and social partnership in the field of integration of people
with disabilities
Mr Pekka TUOMINEN, President of the Finnish Association of People
with Mobility Disabilities, Board and Executive Committee Member of
EDF
16:30 – 19:00
20:00
22 September 2006
09:00
Departure from Hotel Poulkovskaya by coach to the Conference venue
Plenary Session II:
National experiences in improving the quality of life of people with disabilities
10:00 – 10:45
Social protection of people with disabilities in St Petersburg: current
situation and outlook
Mrs Galina KOLOSOVA, Vice-Chair of the Committee on Employment
and Social Protection of Citizens of St Petersburg, Russian Federation
Functioning of social protection for people with disabilities at regional
level
Mr Gheorghiy REVA, Chair of the Committee on Social Security of the
Administration of Tchita Oblasti, Russian Federation
10:45 – 11:05
Nordic experiences in improving the quality of life of people with
disabilities
Mr Jan TØSSEBRO, Professor at the Norwegian University of Science
and Technology (NTNU), Chair of the National Council on Disability,
Trondheim, Norway
11:05 – 11:20
11:20 – 11:40
Portuguese experiences in improving the quality of life of people with
disabilities
Mrs Idalia MONIZ, Secretary of State for Rehabilitation, Ministry of
Labour and Social Solidarity, Portugal
11:40 – 12:00
Romanian experiences in improving the quality of life of people with
disabilities
Ms Gabriela DOBRE, Senior Counsellor of the National Authority for
Persons with Handicap, Romania
12:00 – 12:15
Implementing the Action Plan in Hungary
25
Mrs Edit RAUH, Undersecretary of State of Equal Opportunities,
Ministry of Social Affairs and Labour, Hungary
12:15 – 12:30
Spanish experiences in improving the quality of life of people with
disabilities
Mr Pascual DE LA PARTE, Consul General, Spain
12:30 – 14:00
Lunch at the restaurant « The Russian House », Malaya st.3, Pushkin
Plenary Session III:
Implementation of the Council of Europe Disability Action Plan 2006-2015
14:30 – 15:00
Towards full social inclusion of people with disabilities
Mr Michael HANCOCK, United Kingdom, Representative of the
Parliamentary Assembly of the Council of Europe
15:00 – 16:00
Promotion, implementation and follow-up of the Disability Action Plan:
Results of the Workshops
Workshop 1 :
Mr Bjørn BREDESEN, Norway (Chair)
Professor Hilary BROWN, United Kingdom (Rapporteur)
Workshop 2 :
Mr Hartmut HAINES, Germany (Chair)
Ms Ellinor Joan SUNDSETH, Norway (Rapporteur)
Workshop 3 :
Ms Liubovi GLEBOVA, Russian Federation (Chair)
Mr Andrey PANOV, Russian Federation (Rapporteur)
16:00
Conclusions
Ms Viveca ARRHENIUS, Chair elect (2006-2007) of the Committee on
the Rehabilitation and Integration of People with disabilities (CD-P-RR),
Ministerial Adviser, Ministry of Social Affairs and Health, Finland
Mr Alexander VLADYCHENKO, Director General for Social Cohesion,
Council of Europe
15:45 – 16:00
Adoption of the Conference Declaration
Mrs Laila GUSTAVSEN, Vice-Chair, State Secretary, Ministry of
Employment and Inclusion, Norway
16:00 – 16:30
Closing
Ms Liubovi GLEBOVA, State Secretary, Deputy Minister of Health and
16:30 – 17:30
26
Press conference - In “Winter Gardens”
Ms Liubovi GLEBOVA, Chair, State Secretary, Deputy Minister of
Health and Social Development, Russian Federation
Ms Liudmilla KOSTKINA,
Mrs Laila GUSTAVSEN, State Secretary, Ministry of Employment and
Inclusion, Norway
Mr Alexander VLADYCHENKO,
Director General for Social Cohesion,
Council of Europe
18:00 – 20:00
Dinner at the hotel
20:00
Technical visit St Petersburg
27
WELCOME ADDRESSES
Mr Mikail ZOURABOV,
Minister of Health and Social Development,
Russian Federation
Ladies and gentlemen!
Colleagues!
Disability is a social phenomenon that no society in the world can escape. In the Russian
Federation today there are over 13 million people with disabilities, and that figure is on
upward trend. Some of them were born with disabilities, while others have become disabled
through illness or injuries, but all of them are members of society and have the same rights
and duties as other citizens.
Health impairment does not mean an impairment of abilities or talent, or of the desire to
express oneself or to live an active life. The achievements of people with disabilities in all
kinds of spheres are widely known and acknowledged: in science, in business, in art, in
creative work and in sport. These achievements have cost people with disabilities enormous
effort in overcoming their afflictions, showing courage of the highest order, strength of spirit
and will, often at the limits of human capability. The state’s duty is to do all it can to
integrate people with disabilities into the life of the country and society, and to establish the
necessary conditions for them to be able to lead a full life in every sphere: work, education,
creative activities, involvement in political and social life, and most definitely the founding
of families and raising of children.
There has been considerable progress in the Russian Federation in recent years in addressing
the problems of disability and people with disabilities. Government policy in this area is
based on a firm legal foundation, primarily the keystone Law "On Social Protection of
People with Disabilities in the Russian Federation". Current legislation relating to this
category of citizens covers a multitude of areas; there are guarantees of jobs and vocational
training for people with disabilities, and of a proper education, health care, social and legal
protection, of their integration and rehabilitation, of their participation in political, social
and cultural life and access to the necessary information.
In the government’s practical measures to implement the guarantees provided for at
legislative level, priority is being given to raising the income of people with disabilities and
improving the quality of their lives. Pensions are provided, and the amount of disability
pensions is continually rising. People with disabilities receive monthly cash payments which
are annually indexed to rise; they enjoy a right to a number of free social services, including
supplementary provision of medicines, treatment at sanatoria and spas, travel to and from
their place of treatment and use of suburban rail transport.
The federal targeted programme “Social support for people with disabilities for 2006-2010”
is being successfully implemented, and during this period we will see the commissioning of
new buildings in sanatoria, vocational training institutions and rehabilitation centres for
people with disabilities, including some scheduled for this year. Under the federal
29
programme, new and efficient technologies for medical, social and occupational
rehabilitation are being devised and approved, and model rehabilitation institutions are
being created which will then be reproduced over the whole country.
In 1994, the Russian Federation Government ratified the first version of the Federal list of
rehabilitation measures, rehabilitation hardware and services, and this was recently
substantially enlarged on the basis of proposals received from social organisations
representing people with disabilities. New types of rehabilitation hardware complying with
high international standards are being developed and manufactured.
Steps are being taken to equip residential and administrative buildings, pedestrian
crossings, public transport, medical institutions, educational institutions, commercial
businesses, hotels, railway stations, airports, museums, exhibition centres and sports
facilities with special structures and fittings to provide the necessary conditions allowing
people with disabilities to use them. So a barrier-free living environment is gradually being
established for people with disabilities, and their right to a full life in society, to work, to
education and to active leisure is thus becoming a reality.
The socio-medical expert appraisal system has been reorganised. The Federal centre has now
taken on the task of building up human resources and facilities at the disposal of this
service. The equipping of many socio-medical expert appraisal institutions has taken a
noticeable turn for the better, with the appearance of modern diagnostic equipment,
computers and vehicles, so that specialists can now travel out to the most remote areas to
make appraisals.
The state supports the publication of dozens of newspapers and magazines for people with
disabilities, including some published in Braille. On the main federal TV channels, closedcaption subtitling for people with hearing impairments has been introduced. The unique
Theatre of Mime and Gesture was set up in the Russian Federation and has been
successfully functioning here for many years. Physical education and sport for people with
disabilities are developing, and the achievements of Russian sportsmen and women at the
World Paralympic Games are well known. They have won dozens of gold, silver and bronze
medals.
The Ministry is striving to develop partnership with organisations representing people with
disabilities, with the aim of joining forces to make a reality of the social guarantees
established for people with disabilities and stimulating social activity in people with
persistently impaired health. Current legislation allows associations for people with
disabilities significant preferences, enabling them to achieve the aims for which they were
set up and carry on a range of activities, including commerce, to run their own businesses
and rehabilitation institutions and to organise festivals, competitions, fun days and sports
events.
Starting this year, in response to an assignment handed down by the President of the
Russian Federation, the federal budget will be reimbursing the leading national
organisations for people with disabilities for all the expenses incurred by businesses they
have established in the form of profit tax and insurance premiums on compulsory pension
insurance. The federal budget has set aside 500 million roubles for this purpose in 2006,
while the draft budget for 2007 contains a provisional figure of 700 million rubles.
30
While on this subject, I must tell you that each year sees an increase in direct spending from
the federal budget on problems relating to people with disabilities. Funds to the tune of
152.3 billion rubles were set aside for this purpose in 2005, and this figure rose to
177.6 billion rubles in 2006. If all types of federal budget spending for these purposes are
considered, including monthly payments in cash, the total is over 400 billion rubles. At least
120 billion rubles have been earmarked to fund institutions providing social services for
people with disabilities and the elderly and for other social support measures for people
with disabilities from Russian Federation constituent entities’ budgets.
On average, the annual direct expenditure from the federal budget per head for people with
disabilities has risen from 1,741 rubles in 2001 to 13 700 rubles in 2006, i.e. by almost 8 times.
A significant rise in equivalent expenditure is also planned for 2007.
In putting into effect a substantial package of measures to provide social support for people
with disabilities and to improve the quality and accessibility of social services for them,
including medical, educational, rehabilitation-related, socio-domestic, cultural and
recreational, information-related and other services governing quality of life, the Russian
Federation is gearing itself to international standards that are accepted both by the global
community and European societies.
This is precisely why the Russian Federation has been playing a constructive role in drafting
the International Convention on the Rights of Persons with Disabilities recently adopted by
a special committee at the UN. We hope that this important Convention will go forward this
year for consideration by the UN General Assembly.
We welcome the decision of the Council of Europe Committee of Ministers of 5 April 2006
concerning the Recommendation on national-level implementation of the Council of Europe
Action Plan to promote the rights and full participation of people with disabilities in society
for 2006-2015.
It is particularly pleasing for us that the European Conference at which this Plan is to be
presented to national government representatives from Council of Europe member states,
non-governmental organisations and the media, and where the green light is to be given to
the actual implementation of the Plan, is taking place here in the Russian Federation, in
St Petersburg. Our “Northern Capital” is particularly attentive to the problems of people
with disabilities and to improving the quality of their lives. One sign of this is the
remarkable new rehabilitation centre which has been chosen as the venue for our conference
and which we have all just inaugurated. We would like to thank the St Petersburg city
authorities for their help in organising the conference.
The Russian Federation, as a member of the Council of Europe, will definitely be taking an
active part in implementing the Action Plan recommended by this authoritative panEuropean organisation, and will be taking fresh steps to improve the quality of life for
people with disabilities, to achieve their fullest possible integration into society and to
enable them to lead independent lives. In our policy, at the legislative level and in the
practical steps we take, we intend to adhere to the principles and approaches set out in the
Council of Europe Action Plan to promote the rights and full participation of people with
disabilities in society.
On behalf of the Russian Federation Government, may I wish all the participants in the
European Conference a fruitful and constructive session.
31
Mr V.I. MATVIENKO,
Governor of St Petersburg
Speech read by Ms Ludmilla KOSTKINA,
Friends!
I am pleased to welcome to St Petersburg those taking part in the European Conference on
improving quality of life for people with disabilities.
It is both a great honour for us to receive such important guests, and also a great
responsibility. The significance of this large-scale public forum is underscored by the fact
that it is happening under the aegis of the Russian Federation’s chairmanship of the Council
of Europe Committee of Ministers.
Addressing social tasks is a top-priority issue for us. In St Petersburg we have built up an
experience in both the theory and the practice of rehabilitation of people with disabilities
that is unique. We would naturally like those taking part in the conference to learn as much
as possible about the systematic and wide-ranging work we have done for people with
disabilities. In taking decisions and passing laws to improve the social status of people with
disabilities, we take into account the requirements of international legal enactments and the
experience acquired in European countries.
I am sure that the Council of Europe’s ten-year Action Plan to improve the quality of life for
people with disabilities will help to ensure that their rights are fully respected and that they
are included in all areas of life.
I wish all those taking part in the conference a fruitful period of work and some
unforgettable impressions from their time spent in our beautiful city!
33
Ms Maud De BOER-BUQUICCHIO,
Deputy Secretary General of the Council of Europe
Let us start with a definition, or rather, the absence of it. What is a disability? The answer is
that there is no answer, at least not one everyone can agree on. There is no uniform
definition of “disability” in Europe. Definitions vary across and within member states
depending on the purpose of the definition. As a consequence, there are no reliable statistics
on the number of people with disabilities in Europe. Countries with a narrow definition
report a disability rate of 2% of the population, countries with a broad definition of disability
report a rate of up to 25% of the population. The World Health Organization made a healthbased estimate that 10% of the world’s population has a disability. According to a recent EU
household panel, 15% of the population in EU member states has a disability.
Whatever the percentage may be, we know that it does not affect the population evenly but
that it increases with age. While only 0.5% of 0-2 year olds have a disability, the rate
increases to about 60% amongst the population aged 60+ and to 80% amongst the
population aged 80+.
We also have fairly accurate estimates on the reasons for disability. Only 5% of disabilities
are congenital and almost 90% are caused by diseases, accidents or armed conflicts.
When experts fail to offer definitions, a lay person may often be closer to the mark. It was
Martina Navratilova who once said that disability was a matter of perception. I would add
that it is also a matter of attitude. In other words, while we are all at considerable risk of
suffering a functional impairment at one point in our life, the degree of our disability will
not be determined by our medical condition, but rather by the way we will be seen and
treated by society.
This approach has led to a policy shift in Europe from a medical model to a social and
human rights-based model: from the patient to the citizen. The bottom line is that people
with disabilities have the same rights as non-disabled persons and discrimination on the
grounds of disability should be prohibited.
That is the policy, but in reality, people with disabilities still have difficulties in accessing
and fully enjoying their rights due to various barriers and obstacles in society - some of these
barriers are physical or technical, but most of them are attitudinal.
The first hurdle is to turn well-intended principles into tangible improvements. That means,
for example, that people with disabilities also have the right to live in their local community
rather than in a large residential institution and that children with disabilities have the right
to live with their families in their community rather than in such large residential
institutions.
To help our member states to implement these and other policy objectives, the Council of
Europe has prepared a Disability Action Plan 2006-2015 which we are launching at this
conference here in St Petersburg.
The Council of Europe Disability Action Plan 2006-2015 covers all key areas of the life of
people with disabilities. Its 15 action lines, extending from the participation in political and
34
public life, to education, health care and awareness-raising, to mention just a few, set out key
objectives and specific actions to be implemented by member states.
The Action Plan pays particular attention to people with disabilities who face specific
barriers or experience two fold discrimination, such as children and young people with
disabilities, women and girls with disabilities, people with disabilities in need of a high level
of support, ageing people with disabilities and people with disabilities from minorities and
migrant communities. They have a higher risk of exclusion and generally have lower levels
of participation in society than other people with disabilities. These specific groups of people
with disabilities require a horizontal response to ensure their inclusion in society. The
Council of Europe Disability Action Plan 2006-2015 calls upon policy makers to initiate
cross-cutting actions to ensure that individuals can reach their full potential, enjoy their
rights and participate fully in society.
The Council of Europe is a European organisation which promotes, defends and extends
universal values. This is the basis of our close co-operation with the United Nations, which
includes efforts to end discrimination against people with disabilities at the global level. The
Council of Europe actively participated in the work of the UN Ad Hoc Committee, which
drew up the text of a new landmark treaty setting the minimum standards that governments
must meet to ensure that persons with disabilities effectively benefit from their civil,
political, economic and social rights. The convention will now be sent formally to the UN
General Assembly for adoption at its next session, and will subsequently be open for
signature and ratification by all countries.
In conclusion, I should like to thank the Russian authorities for placing this issue of people
living with disabilities so high on the agenda of their Chairmanship of the Committee of
Ministers, and of course for hosting this conference here in St Petersburg.
The Council of Europe Disability Action Plan for the next decade, which we are about to
launch should mark a turning point and bring a change allowing the people with disabilities
to live in dignity and fully enjoy their human rights. This is a moral imperative, but it is also
more than that. Apart from a clear ethical obligation, our societies also have very practical
interests in creating conditions in which people with disabilities are able to lead a
meaningful and productive life. This is not about being charitable, it is about investing in
people and bringing benefits to society as a whole.
35
Ms Laila GUSTAVSEN,
State Secretary, Ministry of Employment and Social Inclusion,
Norway, Presidency of the Nordic Council of Ministers
Dear Minister, distinguished guests
On behalf of the Norwegian Chairmanship in the Nordic Council of Ministers and the
Norwegian Government I have the great honour to welcome all participants to this
important pan-European event.
I am very pleased to see that the programme of the Conference covers many different topics
of crucial importance to improving the life, as well as securing the human and social rights
of people with disabilities.
The Norwegian Government’s vision is that persons with disabilities should have the same
opportunities for personal development, participation and enjoying life as other citizens. No
one should be left behind!
•
•
•
•
Firstly, this issue is about active participation and full equality. Here I mean
participation in the broad sense. If persons with disabilities are to be equal members
of society, the group must be able to take part in both the services provided for and
political decision-making. A major goal is therefore to strengthen the individual
users’ possibilities to express viewpoints and to give non governmental
organisations, as for example European Disability Forum (EDF), possibilities to
participate in political processes. I am glad to see that organisations representing
people with disabilities are represented at this Conference.
A second objective is good access to buildings, outdoor environments and
information. What we know as Universal Design.
Thirdly, people with disabilities have talents and resources they should have the
opportunity to use. So access to work is of utmost importance, so that people with
disabilities can utilize their abilities and talents for the benefit of themselves and
society.
And finally economic and social security must be ensured.
Norwegian authorities have also supported the commitment and efforts of the Council of
Europe to underline the importance of a children’s rights perspective and also the
eradication of violence against all children, including children with disabilities. I must here
mention that in 2004 under our Chairmanship of the Committee of Ministers of the Council
of Europe we organised the Conference “Human Rights – Disability – Children”.
I am glad to see that all these aspects are covered both in the Action Plan and as themes at
this conference.
In northern Europe the Nordic Council of Europe has an important role in supporting
national policies aimed at improving the quality of life of citizens in this region.
I put great expectations in the co-operation between the Council of Europe and the Nordic
Council of Ministers in the disability field, which was started last year. I hope the cooperation will be encouraged by this conference and developed into an active partnership.
36
Through an active partnership we can make the most effective use of resources to promote
and secure full participation for all!
To create such a society we should use this opportunity to agree that there in no such thing
as: THEM and WE!! It is about US!!
So the question is how can we manage to do so?
I hope that you will use this conference to have an open-minded exchange of ideas about
good practices. I am certain that this conference and the Action Plan will contribute to
strengthening equal participation and full participation for people in Europe. I wish you a
useful conference.
Thank you for your attention.
37
Mr Alexsandr NEUMYVAKIN,
Chairman of the Russian Association of the Blind
Conference organisers!
Conference participants and guests!
Ladies and gentlemen!
On behalf of the All-Russian Social Organisations for people with disabilities, may I welcome
all of you who are taking part in such a representative international forum, at which we shall
be looking at questions of how to improve the quality of life for people with disabilities.
It is clear how urgent these questions are. All countries, to a greater or lesser extent, are
doing something to create equal opportunities for people with disabilities. If we are to
succeed in this task, it is important that we come up with common and unified approaches,
principles and standards.
The manner in which it deals with people with disabilities is a hallmark of the maturity of a
society. Civilised society should do all it can to create equal opportunities for citizens with
impaired health: they should be enabled to receive an education, and to take part to the full
in social, political and cultural life; they should be able to access information and social
infrastructure facilities; and they should be able to find employment and material support.
The All-Russian Social Organisations for people with disabilities would like to express their
gratitude to the Council of Europe member states for the attention they give to people with
disabilities, for organising this conference, and for shaping a European policy to address our
problems
We wholeheartedly support the Disability Action Plan drawn up by the Committee of
Ministers of the Council of Europe for the next ten years, which is primarily aimed at
protecting the rights of people with disabilities, improving the quality of their lives and
turning people with limited opportunities from patients into fully-empowered citizens of
their countries.
We would like to hope that the work of the conference will give a new impetus to
governments of Council of Europe member states in finding solutions to the problems faced
by people with disabilities and in providing them with social security.
In our view, the problems faced by people with disabilities and their organisations cannot be
solved without practical co-operation and a constructive dialogue between state authorities
and non-governmental disabled people’s social associations, and without the establishment
and functioning of international organisations for people with disabilities. We must work
together if we are to tackle the biggest social task: that of enabling people with disabilities to
live a decent life.
Experience of interaction between Russian social organisations and state authorities on the
federal and regional level has shown that the only way to achieve positive results is for them
to interact on partnership terms.
A lot is being done for people with disabilities in the Russian Federation. The most
important thing is that President Putin understands the problem, and that there is support
38
for disabled people’s organisations; and there have been specific practical results. As things
stand today, though, one would have to concede that equal opportunities for people with
disabilities, in the full sense of the term, have not yet come about. There are still question
marks over the implementation of the Federal Act which is associated with replacement of
benefits in kind by money payouts. Application of the concept of degrees of loss of capacity
to work instead of disability groups in calculating the size of pensions, monthly cash
benefits and provision of ranges of social services has had a particular impact in lowering
living standards. We are banking on continuing constructive dialogue with the state to
address the matter of social security for people with disabilities and the problems this brings
with it.
Rapidly changing times put us under pressure to come up with new ideas and approaches,
and they confront us with new tasks. So I am sure that this conference will provide food for
thought about tomorrow, and about the development of a new strategy and new tactics for
governments of states and social organisations representing people with disabilities, where
protection of the rights and interests of people with restricted opportunities is concerned.
May I wish the conference a fruitful and successful session of work, and all those present
today in this hall health and prosperity.
39
PLENARY SESSION I:
PRESENTATION OF THE COUNCIL OF EUROPE DISABILITY
ACTION PLAN 2006-2015
The Human Rights context – keynote speech
Mr Thomas HAMMARBERG,
Abstract - People with disabilities should have the right to participate
There is an urgent need to stop discrimination against people with disabilities. The simple
principle that society must adjust to the needs of all people is just not respected in reality
and Europe is no exception. City planning has still not included the interests of persons in
wheelchairs in many places. It has happened that people have been prevented from voting
because there was no ramp to the rooms with the ballot boxes!
Deaf and blind people are unnecessarily excluded because the state does not provide
support to simple aid technology. Schools in several European countries are not ready to
meaningfully receive children with disabilities. Efforts for inclusive education have been
half-hearted, if not totally absent.
So-called special schools are sometimes of lower quality and do not give the skills necessary
for the open labour market. Job opportunities are also limited due to discriminatory
practices and physical barriers at the workplace, at public transport or at home.
The treatment of persons with mental disorders is sadly scandalous in some countries.
People are kept in institutions no better than bad prisons. Staff in these places have low
status, are badly paid and have no resources to support genuine rehabilitation.
I have received reports from credible non-governmental organisations – the Mental
Disability Advocacy Centre in Budapest is one of them – that so-called cage beds still are
used in psychiatric hospitals in some European countries. Such mal-practices must stop.
Charity is not enough. What is needed is a solid recognition that persons with disabilities
have human rights. This requires a combined approach: both support to the individual and
changes of society as a whole.
•
We need to provide for health care, rehabilitation and the necessary assistance
devices - aids and equipment to support the individual to live as independently as
possible in his or her society.
•
At the same time we must work towards a society accessible for all. This is a society
where persons with disabilities have equal access to education, employment, legal
and social protection and where everyone has equal opportunity to participate in the
life of the community. In such a society the need for individual support will
gradually be reduced.
The way forward will require political will and systematic work. The existing situation
should be evaluated, areas of progress identified and determined measures taken to address
41
the problems Follow-up and evaluation is crucial if the work is to be effective and meet the
new challenges.
Of great importance is the involvement of the persons themselves, both at the individual
level and through their organisations. Respect for differences, individual autonomy,
freedom of choices, participation and inclusion should be guiding principles of these efforts.
European governments which believe that all persons are equal in dignity and rights should
implement the Council of Europe action plan. The time has come to recognize in deeds that
people with disabilities have human rights as all others.
Presentation
Within the United Nations a draft Convention has just been proposed to protect the human
rights of persons with disabilities. Why was it at all necessary to draft such a special treaty?
Are not people with disabilities covered by the already existing human rights norms? For
instance, the right to education, health care, an adequate standard of living, freedom of
expression, security against exploitation and protection against discrimination?
Yes, they are protected by these agreed human rights standards – formally and legally. But
in reality people with disabilities are still discriminated all over Europe and the world as a
whole. That is why the standards have to be made more concrete and that is why the
Council of Europe Action Plan is so important.
It still happens that persons with disabilities are denied meaningful education and
opportunity to support themselves. It still happens that they are prevented from
making choices about their health, well-being and how and where they want to live.
It still happens that children with disabilities are denied their family and educational
rights because ordinary schools are not prepared to meet their needs. So-called
special schools are sometimes of lower quality and do not give the skills necessary
for the open labour market.
Job opportunities are still limited due to discriminatory practices and physical
barriers at the workplace, at public transport or at home. City planning has still not
included the interests of persons in wheelchair or with intellectual disabilities.
The treatment of persons with mental disabilities is sadly scandalous in some
countries. People are even this very day kept in institutions no better than bad
prisons.
People with disabilities are in some cases also denied the right to vote and others
may not be given a genuine chance to cast a ballot because election procedures have
not been accessible to them all.
So, in reality some fellow human beings do not have equal opportunities and possibility of
full participation in society. This does not mean that there has been no progress in recent
years. Attitudes have begun to change. The mere facts that a new Convention is being
42
drafted and that we meet here to launch an Action Plan are symptoms of a growing
realisation of the need to stop discrimination and exclusion.
We do not have to wait for the final adoption of the new Convention. We already have the
UN Standard Rules on the Equalization of Opportunities for Persons with Disabilities
defining standards. At the European level article 15 of the Revised European Social Charter
is of great importance. This article emphasises the right of persons with disabilities to
independence, social integration and participation in the life of the community.
To ensure this, States parties have pledged to take positive action: to provide education and
to promote access to employment, transport, housing and culture. The main purpose of this
article is to make clear that states have a responsibility to remove barriers in society
preventing people from enjoying their rights.
Protocol 12 to the European Convention contains a general prohibition of discrimination.
This Protocol is of particular importance to persons with disabilities. Cases of violations in
countries which have ratified can be brought to the European Court on Human Rights.
One good way of jumpstarting the implementation of the Action Plan would therefore be to
ratify the Revised Social Charter and Protocol No. 12 – all member states have not yet done
so.
A good law is the backbone of all human rights enforcement. However, even the best
legislation may not be sufficient. I had a meeting on Tuesday night with non-governmental
organisations here in St Petersburg. One of their messages was that the laws here are good –
in fact, excellent – but they have only partly changed reality. Much more remains to be done.
That is, in my assessment, the case all over Europe.
One problem is that attitudes tend to change slowly. In societies where people with
disabilities long were hidden away in large institutions others have been unsure of how to
react to disabilities. In some societies there is still a stigma on persons with disabilities. There
the awareness campaigns are particularly important. Hopefully, a policy of inclusive
schooling can also eradicate such prejudices.
The language tends also to influence attitudes. If we continue to call persons with disabilities
“invalids” – people who are “not valid” – there is a most unfortunate message in that.
There is even a difference between “a disabled child” and “a child with disabilities”. In
order to emphasise that the child is foremost a child with all the social and emotional needs
of every child, we do prefer the term “a child with disabilities” rather than putting the total
focus on the impairment.
The main message from the non-governmental organisations working in this field is that the
environment should adjust to the individual rather than the individual to the environment.
We need ramps for the wheelchairs and other adjustments to make it possible for people to
be active members of society. This is what it means to make society inclusive for all.
43
The former UN Special Rapporteur on the Standard Rules, Bengt Lindqvist, said the
following:
“The blind have never demanded to be able to enjoy Rembrandt’s paintings, since we know that we
cannot see them. But we do demand to be able to read the same newspapers as others read, because
that is possible. And if we do not get to do that, this would be a huge violation of our rights.”
It is now recognised by most that the old institutions must be closed. Many have indeed
been closed. Ideally, everyone should be able to live in a family or family-like environment
and go to an ordinary school or workplace. When that is not possible, the institutions should
be much smaller than before – and human friendly.
The emphasis on early intervention is important. It is also essential to evaluate the new
problems created by this radical change of policy. One such problem was mentioned the
other day by the civil society groups: that the burden on single mothers has become too
heavy. They have to care for their children with impairments and at the same time try to
earn a living for themselves and the child.
The non-governmental groups raising such points are admirable. Many of them are built by
parents to children with disabilities. They work hard and concretely for the schooling of
their children and at the same time advocate improved government programmes. We would
not go wrong if we listen to them with attention. We would go right if we reduced
unnecessary bureaucracy which tends to hinder their work.
To summarise: achieving an inclusive society takes planning and systematic work. Some
aspects have proven most essential in that effort:
High level of political support and allocation of adequate resources.
A thorough evaluation of existing policies and practices where problematic areas are
identified. Here the institution of Ombudsman can be particularly valuable – also on
a regional level.
Action-oriented plans and strategies with concrete measures and explanations how
these measures will improve the existing situation. These plans should also clearly
point out who is responsible for implementation and indicate timeframes and
benchmarks.
Involvement of all the actors concerned is crucial during the process. Both those
responsible for implementation at national or local level, people with disabilities and
their representative organisations as well as independent national human rights
institutions should be invited to participate. This will contribute to the legitimacy,
create ownership and make implementation easier and more effective.
Effective follow-up and evaluation. We need to learn from our mistakes and build on
our successes.
In the end this is an ethical issue. A society which gives priority to its most vulnerable
members and their rights, that society is a good society.
44
Key Action Lines
Mr Hans SLUITER,
Chair of the Drafting Group of the
Council of Europe Disability Action Plan
Abstract
The Council of Europe Disability Action Plan 2006-2015 seeks to translate the aims of the
Council of Europe with regard to human rights into a European framework on disability for
the next decade.
Set against the backdrop of the wider Council of Europe Strategy for Social Cohesion, the
key objective of the Action Plan is to bring about active participation of people with
disabilities in society and to effectively improve the quality of their lives. The Action Plan
provides the member states with a comprehensive framework of recommendations to take
specific actions at a national level.
The Action Plan has a broad scope and encompasses all key areas of the life of people with
disabilities; for example community living, the built environment, education, and
employment, rehabilitation, social and legal protection and awareness raising. These areas
are duly reflected in 15 key action lines. The overarching theme of the action lines is the
enhancement of accessibility and equal opportunities in the broadest sense in order to
promote active participation and social inclusion. The principles of Universal Design,
mainstreaming and quality services are key to meet these objectives.
Opportunities for active participation and social inclusion are first and foremost created by
community living. Community-based quality services, person-centred support and
deinstitutionalisation are of paramount importance to implement and support community
living schemes.
An accessible safe environment encourages independent living in the community. Furthermore
accessibility of public transport services is a prerequisite to move around freely and to engage
in activities in the local community and society at large.
In the era of the information society and knowledge-based economy, full access to information
and communication technology is quintessential for full participation in society, and
particularly in education and employment. People with disabilities should have equal access to
education. Mainstreaming of disability issues - including complementary specialist provision
when appropriate - should be carried out in all educational policies and promote the concept of
life long learning. In conjunction with education, employment is elemental to the integration
and economic independence of people with disabilities. Vocational integration should be
enhanced by legislative and positive action measures to ensure equal access to the mainstream
job market.
To attain full citizenship participation in political and public life and democratic processes is
essential. To have a complete life people with disabilities should also be able to fully
participate in cultural, sport and leisure activities.
45
People with disabilities require quality health care services and comprehensive
rehabilitation programmes that include an array of accessible, and where appropriate,
community-based services.
If the need arises, people with disabilities should be able to benefit from services provided
by the social protection system, including social security, social assistance and support.
People with disabilities should be legally protected against discrimination. An adequate
legal and administrative framework is necessary to prevent and combat discrimination.
Along the same lines people with disabilities have to be safeguarded against all forms of
violence and abuse and have access to support services and for victims of violence and
abuse.
Awareness-raising is a key issue that underpins the whole Action Plan. The aim is to combat
discrimination, promote positive attitudes towards people with disabilities and to
mainstream disability issues in all government publications as well as publications of the
media.
There are people with disabilities who face specific barriers or experience double
discrimination, for example women and children and people with disabilities in need of a
high level of support. To address and resolve their specific problems the development of
effective cross cutting policies will be promoted by a twin track approach departing from the
Action Plan and the Council of Europe Strategy for Social Cohesion.
Presentation
1.
Introduction
Mr Minister, ladies and gentlemen,
It is a great honour and a pleasure to be among you today and to have the opportunity of
addressing this important conference on the subject of the key action lines of the Council of
Europe Disability Action Plan. Let me begin with a short introduction.
A human rights based approach is key to ensure the integration and active participation of
people with disabilities. The human rights framework is quintessential to take positive action
and to give proper guidance to the process of disability policy development and
implementation.
At the same time we have to acknowledge that the human rights objectives have not been
fully met to date. Human rights are compromised by reality and progress towards full
citizenship of people with disabilities has been mixed. Human rights principles and objectives
must be translated into purposeful actions that can be effectively implemented and sustained.
That’s why we are here today to launch the 10-year Council of Europe Disability Action Plan.
The Action Plan seeks to bridge the gap between human rights principles and the reality on
the ground. Taking into account country-specific conditions, it provides a roadmap to
governments of the member states to take specific actions aimed at strengthening enabling
factors and removing impeding factors.
46
As a pan-European organisation the Council of Europe represents 46 member states and
800 million Europeans. On average the proportion of people with disabilities in this
population is 12.5%. So, with a target population of around 100 million people with
disabilities there really should be a sense of urgency to develop viable policy plans
mobilising all available resources.
To be able to effectively address problems, the focus of disability policies in Europe is more
and more shifting from specialized plans to more generic and inclusive approaches. It is
aimed at mainstreaming the disability perspective in policy development at all levels, at all
stages and into all policy areas.
Set against this backdrop and with a view to the wider Council of Europe strategy for Social
Cohesion, the Action Plan has a broad scope. It is promoting equitable access to all key
areas of life, such as: community living, education, employment, information, politics and
culture, health care, social and legal protection. These key areas are duly reflected in 15 key
action lines.
2.
Key action lines
I will now look at the action lines in more detail. People with disabilities have to cope with
numerous, multi-faceted and interrelated problems in key areas of life. Therefore the 15 key
action lines must primarily be conceived as an integrated and coherent framework to foster
active participation and social inclusion.
Opportunities for active participation and social inclusion are first and foremost created by
living in the community. Let me give a little context around this.
As I mentioned earlier the target population of people with disabilities in the 46 Council of
Europe member states comes to about 100 million people, the vast majority of whom live at
home so they experience their day-to-day problems mainly in their local environment and
community.
In many European countries there is a trend towards decentralising authority to local and
regional levels of government. That is a positive trend, because for the concrete realisation
of national action plans local and regional levels are particularly crucial. Local authorities
and service providers should know the problems of people with disabilities first hand. They
are directly responsible for public amenities, housing and community-based services.
Equitable access to those services should be facilitated by transparent and independent
assessment procedures. A shift from supply-led provision to user-driven services is needed
to ensure tailor-made and quality service delivery. A major key to quality services is a
competent and professional staff. Quality standards should be developed and maintained
for community based services as well as for institutions.
Community living also implies a process institutional reform and restructuring. Too many
people with disabilities - particularly people with mental and intellectual disabilities - are
still living in large-scale institutions. Sometimes they have to live in very bad conditions.
They should be free to choose where and how to live. A shift from institutional care to living
in the community is key to effectively improve the quality of their lives.
47
Children with disabilities should live at home with their families and be supported in the
local community. At the moment a Council of Europe group of experts is finalising the
elaboration of a targeted programme focused on promoting community living of children.
There is a variety of factors that impact on the deinstitutionalisation process. An adequate
person-centered service support system in the community is a precondition for
deinstitutionalisation. Reform and restructuring processes and the development of
community-based services should be carefully synchronized. Small-scale, sheltered and
supported accommodation in the local community should be available for people with
disabilities who are not able to live independently. When appropriate community-based
services and accommodation are in place, large-scale institutions can be phased out and
closed down. Or, in order to prevent a loss of assets, scaled down and eventually be
transformed in outreaching resource centres to support independent living in the
community.
When people with disabilities seek to actively participate in social activities an accessible
barrier-free built environment and accessible public transport are essential prerequisites.
At present people with disabilities still face unsurpassable obstacles in their daily lives.
Every day they encounter major problems because many parts of society are not accessible
and available, or because products are of no use to them. Housing is often not fully
accessible or capable of being modified. Suitable transport is quintessential to enable people
with disabilities to move around freely and engage in various activities. But often adequate
and fully accessible public transport systems and community-based transport schemes are
lacking.
To improve the overall accessibility and quality of the built environment, services and
products, the application of the principles of Universal Design is of paramount importance.
Universal Design stresses the need to get things right from the start, so that they do not have
to be adapted – often at high costs - as an afterthought.
The Council of Europe Resolution on Universal Design, adopted in 2001, aims to make all
parts of the environment accessible to everyone. In the near future, a Council of Europe
group of experts will report on the state of play of Universal Design application in the
member states. The principles of Universal Design are clearly linked with the concept of
mainstreaming. In essence mainstreaming is about the Universal Design of policies. But
mainstreaming is no cure-all. It must include approved specific disability policies and give
added value to those policies.
In conjunction with an accessible physical environment access to information and
communication technology is essential for active participation in modern society.
The Information Society has great potential and opportunities for all citizens. Many of the
problems people with disabilities experience are due to the fact that they have insufficient or
no knowledge of, or have no access to information. Appropriate measures are needed to
ensure barrier-free access to information and communication technology. In particular the
use of the Internet will boost the dissemination of information and facilitate exchange of
good practices.
Research and development is an essential source of strategic information. Strategic
information to design evidence based policies, to make informed decisions and to map
48
progress. Research centres should provide accessible research data and findings both for
people with disabilities and professionals.
Accessible information and communication technology is particularly conducive to
successful integration in education and employment.
We are living in an increasingly knowledge-based economy and society. Equal access to
education is a basic element to ensure social inclusion as well as independence. The
educational system should be geared toward the development of equality of opportunity. It
should cover all life stages to stimulate personal development and life-long learning. To be
able to achieve the highest level of personal development full access to higher education is
vital. Transition to mainstream education should be encouraged when and where possible.
It is a powerful stimulus for integration and effectively raises awareness of disability as an
element of human diversity. Mainstreaming does not preclude specialist provision. When the
pupil’s individual situation requires specialised education, close co-operation between special
and mainstream schools is necessary.
Employment is the key to achieve economic independence and integration. Today
vocational integration of people with disabilities is one of the most pressing issues. The
employment rates of people with disabilities are still very low. Many of them are left
wanting and are displaced by the forces of a modern global economy. In consequence there
is a wide income disparity between people with disabilities and non-disabled people. The
focus has to shift from assessing disabilities to assessing abilities and to make the most of
possibilities.
In a highly competitive and rapidly changing global economy, policy programmes should
be as broad as possible and flexible enough to promote job placement in the mainstream
labour market. Legislation, measures and services are needed to ensure equality of
opportunity to obtain, keep and retain a job.
Vocational training and guidance can help to clear the way to successful job
placement. Alternatively, supported employment and sheltered workshops can
contribute to the employability of people with disabilities who cannot easily find
employment in the mainstream labour market.
As we have seen, education and employment are key targets for equality of opportunities for
people with disabilities and will bring them sizeable benefits. But to attain full citizenship,
active participation in political and public life is elemental. People with disabilities lack
political clout. They must have the opportunity to exercise their democratic rights and to
participate in decision-making processes that impact on their lives and their communities.
Along the same lines, active participation in cultural, sport and leisure activities is also vital
to have a complete life. These activities should be made fully accessible and also include the
opportunity for involvement on a professional level. Sport should be recognised as a vital
factor of integration and rehabilitation of people with disabilities.
Rehabilitation aims to reverse, reduce or alleviate impairments and disabilities.
Rehabilitation programmes should be implemented to support active participation in the
various activities I just mentioned and to enhance independence and integration.
49
Rehabilitation should be available in the home environment and be linked with communitybased services. Community-based rehabilitation is specifically important to support
independent living, and for parents with a disabled child.
To optimise the beneficial effects, the rehabilitation process must be embedded in
multidisciplinary teamwork. This should promote co-operation and co-ordination between
rehabilitation, health care, and social welfare services.
Linked to rehabilitation schemes, assistive technology and devices have considerable
prospects to support people with disabilities who wish to live independently. However, the
application of assistive technology should always be in line with the needs of people with
disabilities. When assistive technology results in separate solutions and becomes a
substitute for personal assistance, social isolation will increase. Sustainable personal
assistance programmes remain key to supported independent living.
Of course people with disabilities, as other people, require adequate health care and should
have equal access to quality health care services. It is important that health care
professionals should focus more on the social model of disability. Health care services,
rehabilitation services and social services have to broaden their scope to effectively address
the needs of people with disabilities and in particular the needs of children and ageing
They should work in concert and play a role as resource centre and referral agency.
If the need arises people with disabilities should be able to adequately benefit from the
social protection system. The social safety-net should include social security, social
assistance and support.
Low threshold access to legal protection on the same basis as other citizens, should be
supported by a fair and transparent judicial system.
An adequate legal and administrative framework and accessible information on relevant
rules, are necessary to prevent and combat discrimination.
In addition policies should be aimed at safeguarding people with disabilities against all
forms of abuse and violence. Appropriate support for victims of abuse and violence has to
be ensured.
That brings us to the last key action line awareness-raising. Awareness-raising is a major
issue that underpins the whole Action Plan. The past decades were characterised by major
changes in the perception of disability. A fundamental shift took place from a medical
model of disability to a social and human rights based model aimed at full citizenship. A
paradigm shift from patient to citizen! But, ladies and gentlemen, does this also mean that
we have seen a real change in attitudes?
To be honest, I think the new paradigm does not reflect the reality on the ground!
Actually, people often harbour ambivalent, or worse, negative feelings toward people with
disabilities and they are still consciously or unconsciously socially excluded from society.
Improving social inclusion begins with increasing awareness. To eradicate discrimination
we have to address its root causes. Public awareness raising campaigns are necessary to
50
change negative attitudes and to increase a better understanding of the needs and rights of
people with disabilities in society. Action should be aimed at mainstreaming of disability
issues in all government publications as well as publications of the media.
But awareness-raising should not be a one-way process. People with disabilities must be
empowered to advocate their own cause and to play a prominent role as change agents.
Non-governmental organisations of people with disabilities play a pivotal role in
supporting and empowering people with disabilities. They bring in know-how, expertise
and valuable information from the grassroots level. That makes them competent partners in
policy-making and decision making processes affecting the life of people with disabilities.
The European Disability Forum (EDF) has played an active and expert part in the
elaboration of the Action Plan.
The frank and constructive dialogue during the drafting process between the member states
and the EDF was both inspiring and beneficial to this process.
3.
Cross-cutting aspects
That, ladies and gentlemen, covers the main points on the key action lines. The final thing I
would mention are aspects that cut across the key action lines.
Within the European disabled population there are people with disabilities who face specific
barriers or experience double discrimination, namely: women and children with disabilities,
people with disabilities in need of a high level of support, ageing people with disabilities
and people with disabilities from minorities and migrants. They have a higher risk of
exclusion and generally experience lower levels of participation in society.
To be able to address and effectively solve these core problems, integrated policies are
needed which include actions that cut across many key action lines.
The development of effective cross-cutting and integrated policies will be promoted by a twin
track approach departing from the 10-year Disability Action Plan and the Council of Europe’s
Strategy for Social Cohesion.
4.
Conclusion
Now, in conclusion. A fully accessible society, mainstreaming, quality services and specialist
provision where appropriate seems to be the optimum situation for people with disabilities.
In the past decades we have seen much progress in the introduction and implementation of
comprehensive human rights based and innovative policies. However the reality is that still
not enough progress has been made. So there is no room for complacency.
We have yet to implement and consolidate a model of full citizenship, equality of opportunities
and social inclusion of people with disabilities. Therefore existing successful policies and
reforms must be continued, at the same time launching new actions where needed to make real
and enduring progress.
The new United Nations Convention on the Rights of Persons with Disabilities will give a
major push to the Council of Europe Disability Action Plan.
51
The Council of Europe has a long tradition in protecting the human rights of all citizens. It
can draw on extensive knowledge and experience in the disability field and devotes
considerable energy in facilitating member states. But the member states have the primary
responsibility for the implementation of the Council of Europe Action Plan.
Public authorities, social partners, Non-Governmental Organisations of people with disabilities
and civil society have to work in concert and pave the way to combine know-how, expertise
and resources and bring together strength.
In April 2006 the Council of Europe and its member states signed up to an ambitious panEuropean wide 10-year Disability Action Plan. This Action Plan will give a fresh and
necessary impetus to effectively improve the quality of life of people with disabilities in
Europe.
52
A Nordic approach to participation and inclusion of children with disabilities
Ms Rannveig TRAUSTADÓTTIR,
Professor, Faculty of Social Science,
University of Iceland and President of the
Nordic Network for Disability Research,
Reykjavik, Iceland
Abstract
The goal of Nordic welfare services is to promote equality and well-being of all citizens,
including those with disabilities. Since the 1970s, the Nordic welfare states have had policies
aimed to insure children and adults with disabilities the right to a normal life and
participation in everyday activities in society. This presentation will provide an overview of
policies and service practices for children with disabilities in the Nordic countries and
outline the strategies that have been used to promote participation and inclusion of children
with disabilities. It will, in particular, focus on their inclusion in three major arenas of life:
family, school and leisure activities. Research in the Nordic countries indicates that services
which meet the needs of children with disabilities (and their families) have certain
characteristics in common. The presentation will outline these characteristics as well as
discussing how successful the Nordic approaches to inclusion have been in promoting the
participation of children with disabilities and making it possible for them to be a part of
their families, schools and wider communities.
Presentation
The goal of Nordic welfare services is to promote equality and well-being of all citizens,
including those with disabilities. Since the 1970s the Nordic welfare states have had policies
aimed to insure that children and adults with disabilities have the right to a normal life and
participation in everyday activities in society. This paper provides an overview of policies
and service practices for children with disabilities in the Nordic countries and outlines the
strategies that have been used to promote participation and inclusion of children with
disabilities. The focus will be on the inclusion of children with disabilities in three major
arenas of life: family, school and leisure activities. Research in the Nordic countries indicates
that services which meet the needs of children with disabilities (and their families) have
certain characteristics in common. These will be briefly outlined. The paper concludes by
drawing out some lessons from the Nordic approach to inclusion and participation of
children with disabilities that have made it possible for them to be a part of their families,
schools and wider communities.
Nordic welfare policies and people with disabilities
From the outset, the goal of Nordic welfare policies has been to promote equality, justice and
the well-being of all citizens; including those with disabilities. In the 1970s the Nordic
countries adopted new legislation directed at people with disabilities. These new laws and
the policies that followed were based on the ideology of normalisation and integration
which stated the right of people with disabilities to lead a normal life and participate in
everyday life of society (Nirje, 1969; Wolfensberger, 1972). This was accompanied by
53
deinstitutionalisation which entailed the closing down of long-stay institutions, residential
schools and other total institutions (Mansell & Ericksson, 1996)
Nordic disability policies and children with disabilities
From the beginning of the normalisation era there was a strong focus on children with
disabilities with a particular emphasis on their right to family life and the right to education.
Moving children out of long-stay institutions was a priority of the time and many Nordic
countries also had a policy that banned the institutionalisation of children with disabilities.
Instead the emphasis was on support for families to care for their children with disabilities
at home. In order to enable children with disabilities to be part of regular community and
family life it was necessary to establish new community-based services for children living
with their families. These included various types of family support services such as
assistance in the home and community-based rehabilitation services, physical therapy,
occupational therapy, toy libraries and so on. Preschool programmes for children with
disabilities were among the most widespread and most important community-based
services. Part of the emphasis on the integration of children with disabilities in all aspects of
community life was the emphasis on school participation and the phrase “one school for all”
was developed early on to indicate that children with disabilities should go to school with
non-children with disabilities (Sandvin, 1992).
Children with disabilities and their families
For children with disabilities their family is the most important arena of life and the parents
are the most important people in the child’s life. Recent studies in the Nordic countries show
that almost all children with disabilities are living with families, the vast majority live with
their biological parents but a few with step-parents, adoptive or foster parents. The number
of children with disabilities who are not living at home is very small and this only happens
in exceptional circumstances. In the Nordic countries the family is seen as the natural place
for children with disabilities to grow up just like it is for other children (Tøssebro &
Lundeby, 2002).
Early help and support for families of children with disabilities is of great importance. This
support often comes from family members such as the grandparents of the child or from
friends. Professionals are often an important source of services and supports. Parents also
report that it had been very important for them to meet other parents who had children with
disabilities. New parents often find it very helpful to meet other parents who had been
through similar experiences and were leading a normal life with the child with the disability
as a part of the family.
The child’s diagnosis is an important event that has many different meanings for the
parents. In most cases the diagnosis is the key to services for the child. The diagnosis was
also often a relief for the parents because it brought an understanding of “what is wrong”
with the child and the diagnosis was often seen as an explanation of various aspects of the
child and the parents felt like they understood the child better after the diagnosis. However,
the diagnosis of a disability can also bring stigma to the child and the family. Thus, most
parents have a mixed feeling about the diagnosis; in many ways it brings understanding and
explanation of the disability and access to services but at the same time it brings a stigma
attached to the disability and the parents often fear what the future of their child can be
(Traustadóttir, 1991; Tøssebro og Lundeby, 2002).
54
Family life and children with disabilities
In the Nordic countries today the family is considered the natural place for children with
disabilities to grow up in. While the child has a guaranteed place in the family it is not
always given what the child’s place is within in the family. That is, whether the child has a
central place in the family or if it has a place that is similar to other children in the family.
Some studies show that the child with the disability often has a central place in the family.
Sometimes this is due to the fact that the child with a disability requires more work than
other children. In other families the child has a place in the family that is similar to that of
other family members. Often these are children who have milder impairments and can take
part in the various family activities. In other cases this is a conscious strategy that the
parents want to follow because they believe the child with a disability should take part in
family life in the same manner as other children (Tøssebro & Lundeby, 2002).
The traditional literature on families has a tendency to focus on negative aspects of having a
child with a disability; on grief, stress and coping. More recently there is a tendency in the
literature to highlight the positive experiences of having a child with a disability. Parents
often emphasize that their experiences are in many ways positive. These positive
experiences are of different nature, some parents talk about that having a child with a
disability has changed the family relations for the better and some parents report that
having a child with a disability has taught family members to be more open emotionally,
create closer ties and be more considerate of each other. Having a child with a disability has
also led many parents to meet new people they otherwise never would have met. Another
type of positive experience has to do with personal changes. Some parents, for example, say
that having a child with a disability has changed their values and view of life, made them
more open minded, tolerant and accepting of human diversity (Traustadóttir, 1991; Tøssebro
& Lundeby, 2002).
To have a child with a disability means that the day-to-day work of caring for and raise the
child usually requires more work than if a child is non-disabled. A child with a disability
often requires diverse types of therapy and training. Many studies, however, indicate that
parents resist being therapists for their child. Instead, they want the child be a part of family
life in the same way as other children. Most parents who have a child with a disability come
in contact with a large number of “helping professions” in service agencies and programmes
and some parents have described their role as an administrator of all the different services
and professionals (Traustadóttir, 1991; Tøssebro & Lundeby, 2002).
There seem to be many myths about the family life, family patterns and family structures of
families of children with disabilities. One of these myths is the divorce rate. There is a
widespread belief that parents who have a child with a disability are more likely to be
divorced than parents without children with disabilities. Recent studies from the Nordic
countries do not seem to support this. For example Tøssebro and Lundeby (2002) addressed
this issue in their large scale study of children with disabilities and their families in Norway.
They found that parents who had children with disabilities were more likely to stay together
than other parents. Thus, their findings indicated that parents who have children with
disabilities are less likely to divorce than other couples. Another myth is that parents who
have a child with disabilities are more likely not to have more children due to the increased
caring work in relation to the child with the disability. Again, the study carried out by
Tøssebro and Lundeby (2002) did not confirm this. Their findings indicate that children with
disabilities have as many siblings as other children.
55
Families are important for all children, especially for children with disabilities. The inclusion
of children with disabilities in families has been very successful in the Nordic countries.
Today children with disabilities in the Nordic countries grow up in families and it is
considered to be their right to grow up in families just like other children.
Children with disabilities and preschool
Almost all children in the Nordic countries who are of preschool age attend preschool –
including children with disabilities. Preschool integration was one of the first and most
important steps towards the inclusion of children with disabilities in the mainstream of
society. In fact, since the 1970s children with disabilities have had a priority in being
accepted into regular preschools in the Nordic states. At the outset in the 1970s most
children with disabilities were placed in special units in regular preschools but soon these
were closed down and today children with disabilities participate in regular preschool units
with non-children with disabilities. Various supports and services are usually provided as a
part of the preschool programme, these include speech therapy, physical therapy and may
kinds of intensive training.
Inclusion of children with disabilities in preschool has been quite successful in the Nordic
countries. Preschool participation is perhaps the most successful area of inclusion and where
children with disabilities participate most fully with their non-disabled peers.
Children with disabilities and schools
The participation of children with disabilities in schools has developed in similar ways in
the Nordic countries. Legislation calling for the integration of children with disabilities in
regular schools was passed in most Nordic states in the 1970s and in the 1980s most had
adopted a policy of “one school for all” (Dalen, 1999). A good deal of attention was devoted
to defining what was meant by “integration” and early on there was a distinction between at
least two kinds of integration.
Physical integration referred to the location and usually meant that special education classes
were located in the same building or the same grounds as the regular school.
Social integration referred to the social interaction between students with disabilities and
non-disabled students in diverse school activities.
At the outset the policy of school integration stated that children with disabilities should, to
the extent possible, be educated in regular schools. Special schools were only for those who
were not seen as benefiting from regular schools. In the beginning most students with
disabilities were placed in special classes in regular schools. However, there were also some
special schools in the community where some children with disabilities were educated,
particularly children who were regarded as having severe disabilities.
In the 1990s many in the Nordic countries had become critical of the ways children with
disabilities were educated in regular schools. There was, in particular, a critique of the
segregated nature of special education and special support. Many had come to view these as
degrading and discriminatory and research seemed to indicate that these special efforts
directed at students with disabilities were not effective or high quality education. The
concept “integration” was also criticised because it seemed to be based on the notion that the
regular school was only for some children while others needed to be “integrated” into the
school (Dalen, 1994).
56
This critique led to a new policy often referred to as inclusion. People do not necessarily
agree about the difference between integration and inclusion. However, most would agree
that integration means that students with disabilities are integrated into a regular school that
is organised for non-children with disabilities. Inclusion on the other hand refers to a school
system that is organised for all children. Where all students are welcomed in general
education and are educated in their neighbourhood schools in regular classes with same-age
students (Egilson, 2005).
In general, school integration has worked to some extent in most places in the Nordic
countries. However, there are still many barriers to the full participation of children with
disabilities in regular schools. These barriers can be physical in terms of the built
environment as many school buildings are not accessible for students with physical
impairments. Barriers can also be of social nature, some students with disabilities report
negative social reactions such as mobbing, and some surveys show that the attitudes of
teachers and school administrators are not always positive or welcoming. Finally research
indicates that teachers to not always have the knowledge or skills to teach a diverse group of
children and feel unprepared to teach children with disabilities (Egilson, 2004).
Inclusion has proven even more difficult than integration. In fact, quite a bit more difficult
than anticipated and in some places there are signs of a backlash towards more segregation.
It seems especially to be children with emotional and behavioural difficulties who are being
segregated from mainstream schools. Scholars and special educators have also pointed to
the fact that there seem to be a number of contradictions in relation to inclusion in regular
schools. One of these contradictions is that inclusion demands that schools are for all
children, at the same time there is a call for individualised education. Another contradiction
is the principle of inclusion that children with disabilities should be educated in regular
classes, at the same time most children with disabilities need specialised educational
services. There are more contradictions in the education of children with disabilities in
regular schools (see Dalen, 1994 and Tetler, 1998). These contradictions have not been solved
and there is a great need for more research into this area if the Nordic countries are to
achieve their goal of the inclusion of children with disabilities in regular schools.
Children with disabilities and leisure time
When it comes to leisure time most children with disabilities take part in the leisure
activities together with their families. These include summer vacations and family outings to
parks, restaurants, zoos and other places where families go for their leisure time. In the
Nordic countries leisure programmes have also been specially organised for children with
disabilities. Such programmes can be either integrated or segregated. Examples of such
programmes are different after-school programmes and clubs organised around sports,
music of other activities. It is also common to offer special summer camps for children with
disabilities. It is important to note that children with disabilities who are integrated in school
are more likely to participate in integrated leisure programmes There is, however, still a
large number of children with disabilities who attend segregated leisure programmes For
some children and youth with disabilities who attend integrated schools this is often one of
a few places they meet other children and youth with disabilities. But for other children and
youth with disabilities this is a continuation of segregated school life where they spend
much of their time with the same group of children and youth with disabilities. It is also
important to note that, in the Nordic countries, leisure programmes tend to be more
segregated than other services offered to children with disabilities.
57
Families of children with disabilities and the service system
Families of children with disabilities have extensive contact with the public service system.
Research indicates that parents’ experiences of interacting with the services are both positive
and negative. Many parents say that they use much of their time negotiating and fighting
with the system and many express frustrations with the services that are offered. Often,
there seems to be a gap between what the parents need and want and what they receive
from the services (Tøssebro & Lundeby, 2002). The services offered to families of children
with disabilities are very important in terms of making it possible for the children to be
included in family life.
Characteristics of good family support services
The goals of family support services are to empower and support families to care for a child
with a disability, to prevent out-of-home placement of children with disabilities and increase
the quality of life of children with disabilities and their families.
Family support services that meet the needs of families of children with disabilities have a
few characteristics in common. One of these is that they have a clear ideological foundation
which states that all children should grow up in families. These services also tend to view
parents as partners, not as clients, and use family-centered approaches. They offer
individualised and flexible supports and work towards empowering the families and never
try to replace the family in the life of the child. Family support services that meet the need of
families with children with disabilities effectively base their work on the strengths of each
family, not on their weaknesses, and work towards strengthening existing family relations
and support networks. Finally, good family support services exercise self-reflection and selfcriticism, and are conscious about what could be done better and constantly try to improve
their services.
Keys to participation of children with disabilities
In reviewing the key elements behind the Nordic approach to the participation of children
with disabilities at least four elements can be identified that have been important in making
the inclusion of children with disabilities successful.
1. Broad political consensus and commitment. The most important key to the inclusion and
participation of children with disabilities in the Nordic countries is the broad political
consensus and commitment to equality and justice for all, including children and adults
with disabilities. These rest on the basic values behind the Nordic welfare state which all
political parties want to protect.
2. Principles of normalisation and integration were adopted in all the Nordic welfare states
in the 1970s and formed the basis for disability policies. These included the right to lead a
normal life and participate in all aspects of society. Disability policies and services for
children with disabilities and adults with disabilities were - and still are - based on these
principles. An important part of this entailed the closing of segregated long-stay institutions
and the development of community based services.
3. Training of professionals. All the Nordic countries have emphasised the training of
professionals to work with children with disabilities such as special education teachers,
occupational therapists, social pedagogues (a professional training found in most of the
58
Nordic countries that prepares people to work with children and adults with disabilities)
and others. This has made it possible to base the participation of children with disabilities on
professional practice.
4. Understanding disability. The last, but not least, key element behind the success of the
Nordic disability policies and services was a new understanding of disability which often is
referred to as the relational or relative understanding of disability. This view of disability
rejects the medical and individualistic understanding that views the impairment as an
“abnormality” or “deviance” that is the cause of all the child’s problems. Instead the
emphasis is on social issues and the importance of adjusting the environment to meet the
needs of the child. This directs attention from the individual child to the environment. This
understanding views disability as the gap between the individual and his/her environment.
Thus, it is not only the child that needs to be “fixed” but emphasises the importance of
adapting the environment to the child’s needs. This understanding of disability has made it
possible to view the participation of children with disability in context and draw attention to
the importance of removing barriers to inclusion.
Lessons from Nordic approaches to inclusion of children with disabilities
A few important lessons can be drawn from the Nordic approaches to the participation and
inclusion of children with disabilities. Four of these lessons are briefly outlined below.
1. Full inclusion is difficult to achieve. One important lesson from the Nordic approaches to
the participation and inclusion of children with disabilities in the Nordic countries is that
full inclusion has proven more difficult than expected and there are still many barriers to
full participation.
2. Prevent segregation. One of the most important lessons from the Nordic approaches to
inclusion and participation of children with disabilities is the importance of preventing
segregation; to keep children in families, in regular neighbourhoods, in regular schools, and
so on. If children are segregated they tend to “travel” on a segregated path throughout life
and it is difficult to gain access to regular life.
3. Political consensus and commitment to equality and justice for all. To have a wideranging political consensus behind the policies of inclusion of children with disabilities is
very important and provides a feeling of security to families and children when everyday
problems make the practice of inclusion difficult.
4. Understanding disability. How disability is understood affects how it is responded to. If
the “problem” is viewed in terms of individual deficit of the child with the disability it is
logical to work on “fixing” the child. If disability is viewed as a social barrier then it makes
sense to work on removing these barriers. The Nordic understanding of disability makes it
clear that in order for children with disabilities to be included there is a need to work both
on the child and the environment.
Conclusion: How successful have the Nordic approaches to inclusion been?
In conclusion it can be said that the Nordic approach to the participation of children with
disabilities has been quite successful in two areas: family and preschool. In those two arenas
of life children with disabilities are included and accepted. On the other hand, there are two
59
arenas of life that have not been as successful: school and leisure time. For children with
disabilities to be included in these two arenas will require much more effort.
The Nordic approaches to inclusion and participation of children with disabilities are not
perfect. These approaches can be - and are - criticised, especially from within the Nordic
countries. However, in an international context they are among the most successful
nationwide policies and approaches that can be found. Hopefully other countries can learn
from the Nordic experience in this area; both in terms of its successes and its shortcomings.
References
Dalen, M. (1994). “Så langt det er mulig og faglig forsvarlig...” Integrering av
funktionshemmede i grunnskolen (”As long as it is possible and professionally
defendable...” Integration of disabled students in the regular school). Oslo:
Universitetsforlaget
Dalen, M. (1999). Den inkluderende skole: Idealer og realiteter (The inclusive school: Ideals
and realities). In En skole for alle i Norden: Et festskrift i anledning af den 20. nordiske
kongress (A school for all in the Nordic countries: A publication on the 20th anniversary of
the Nordic conference). Stavanger: Den nordiske kontraktgruppe om specialundervisinin
Egilson, S.Th. (2005). School participation: Icelandic students with physical impairments.
PhD dissertation. Reykjavik: University of Iceland, Faculty of Social Sciences
Mancell, J. & Ericsson, K. (Eds.) (1996). Deinstitutionalization and community living:
Intellectual disability services in Britain, Scandinavia and the USA. London: Chapman &
Hall
Nirje, B. (1969). The normalization principle and its human management implications. In
R. Kugel & W. Wolfensberger (Eds), Changing patterns in residential services for the
mentally retarded, pp. 179-195. Washington, DC: President’s Committee on Mental
Retardation
Sandvin, J.T. (Ed.) (1992). Mot normalt? Omsorgsideologier i forandring (Towards a normal
life? The changing character of caring ideologies). Oslo: Communaleforlaget
Tetler, S. (1998). Dilemmar i de sidste 25 års danske integrationsbestræbelser (Contradictions
in the last 25 years of integration attempts in Denmark). In I. Wass (Ed.), Festskrift til Birgit
Kirkebæk: En special pædagogisk verden (Festskrift for Birgit Kirkebæk: A special world of
education), pp. 130-144. Herlev: Historisk Selskap for Handicap og Samfund & Dansk
Psykologisk Forlag.
Traustadóttir, R. (1991). Mothers who care: Gender, disability and family life. Journal of
Family Issues, 12: 211-228.
Tøssebro, J. & Lundeby, H. (2002). Å vokse opp med funsjonshemmning: De første årene
(Growing up with disability: The first years). Oslo: Gyldendal
Wolfensberger, W. (1972). The principle of normalization in human services. Toronto:
National Institute on Mental Retardation
60
The NGO perspective
Mr Stefan TRÖMEL,
European Disability Forum (EDF)
Abstract
One of the important consequences of the Malaga Declaration was the acceptance of the
European Disability Forum (EDF) in the working group in charge of drafting the Council of
Europe Disability Action Plan.
The participation of EDF in the drafting process has had a significant impact on the content
of this Action Plan and has made it an Action Plan not just endorsed by the Council of
Europe member states, but also by the European disability movement.
The title of the Action Plan was a very important issue for EDF. It is not an Action Plan on
disability, but it is an Action Plan to promote the human rights and full participation in
society of persons with disabilities. It is an Action Plan that is embedded in the human rights
approach to disability, therefore strongly reflecting the paradigm shift in disability policies.
Consequently, there is no chapter on prevention of disability, as this would be in
contradiction with the title of the Action Plan. Nobody denies the need for prevention of
disability, but this should be seen as a public health matter, not a matter for disability
policies.
One of the most positive features of the Action Plan is its comprehensive nature; it thus
attempts to cover all the areas of life through the different action lines.
It is also very important that the involvement of representative disability organisations in
policy-making is one of the fundamental principles of the action plan.
The Disability Action Plan was finalised before the Convention on the Rights of Persons
with Disabilities was adopted. Notwithstanding, there is great complementarity between
both instruments, as the ongoing work in the United Nations Committee was taking into
account by the Council of Europe drafting group.
The overarching principles are basically the same and the action lines provide a useful
action-oriented addition to the Convention on the Rights of Persons with Disabilities. While
the Convention sets the objectives, the Action Plan focused on how to achieve these
objectives.
However, there are some elements in the Action Plan, notably in its action line on legal
protection, which would benefit from a revision in view of the final Convention text. This
might be done in the context of the mid-term review foreseen in the Action Plan.
One of the great challenges ahead and one of our main concerns is to ensure that the Council
of Europe Disability Action Plan will really have an impact on the lives of persons with
disabilities.
61
Therefore, one of the main objectives of this seminar should be to reflect on the actions
required to make this Action Plan a tool for legislative and policy change at national level. If
this Action Plan will just be a document on the shelf, the efforts undertaken by all will have
been a waste of time and energy.
EDF would like to suggest the establishment of a working group in charge of its
implementation and follow-up.
The provision of technical assistance to governments and representative disability
organisations from some of the least developed Council of Europe member states might be a
valuable contribution to the implementation of the Action Plan.
Presentation
One of the important consequences of the Malaga Declaration was the recognition of the
important role of organisations of persons with disabilities, which led to the acceptance of
the European Disability Forum (EDF) in the working group in charge of drafting the Council
of Europe Disability Action Plan.
The participation of EDF in the drafting process has had a significant impact on the content
of the Action Plan and has made it an Action Plan not just endorsed by the Council of
Europe member states, but also by the European disability movement. The Action Plan has
been the outcome of a constructive dialogue between Government delegates and the
European Disability Forum.
It is clear that the times have passed when disability policies were designed without the
involvement of persons with disabilities through their representative organisations. This
involvement is clearly reflected in the Action Plan and can be expressed through the slogan
of the EDF “Nothing about us without us”.
This presentation will not do a detailed analysis of the Action Plan, but focus on some key
general elements.
The Action Plan is clearly based on a human rights approach to disability. But we need to
remember that this is a new approach for disability policies and we all, NGOs as well as
governments, still need to learn how to use this new approach.
It is definitely the right angle through which disability policies need to be analysed and
checked. One could summarise it through the following sentence: “Don’t do to persons with
disabilities what you would not like to be done to yourself”. If this thumb rule is applied, we
will realise how we still are applying wrong policies and measures in many areas.
The human rights approach to disability policies obliges us to be coherent. Let me give one
example.
The title of the Action Plan is not the Council of Europe Action Plan on disability. A rather
long discussion was held during the drafting process on what should be the title of the
action plan. EDF and many governments pushed successfully for a title which makes it clear
that this is an Action Plan to promote the rights and full participation in society of persons
with disabilities.
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It is not an Action Plan on disability as an issue, but it is an Action Plan targeted at a specific
group of citizens, persons with disabilities, who are the latest group to arrive on the human
rights agenda.
The change in the title led to another debate and to another decision: the removal from the
Action Plan of the issue of prevention of disability.
EDF argued that prevention of disability had no place in an Action Plan to promote the
rights of persons with disabilities. This does not mean that actions to prevent accidents or to
promote a healthy life should not be promoted, but these are measures which should be part
of public health and others programmes. Ideally, these measures should no longer be called
prevention of disability.
Moreover, certain public health (or accident prevention) campaigns which gave a negative
message about persons with disabilities should no longer be done as they undermine the
efforts of full participation of persons with disabilities in society.
One of the most positive features of the Action Plan is its comprehensive nature. The Action
Plan attempts to cover all the areas of life through the different action lines. Thus, the Action
Plan demonstrates the interrelated character of the different rights, be these civil, political,
economic, cultural or social.
The Action Plan was finalised before the Convention on the Rights of Persons with
Disabilities was adopted. Notwithstanding, there is great complementarity between both
instruments, as the ongoing work in the United Nations Committee was taking into account
by the Council of Europe drafting group.
The overarching principles are basically the same and the action lines provide a useful
action oriented addition to the Convention on the Rights of Persons with Disabilities. While,
the Convention sets the objectives, the Action Plan focused on how to achieve these
objectives.
If I were to be asked to describe what would be the objective of the Action Plan, I could give
a standard answer: the Action Plan shall ensure the equal and effective enjoyment of all
human rights of persons with disabilities.
But, I could also give a different answer based on the principle that disability is part of
human diversity. From this angle, the objective of the Action Plan would be achieved when
society stops looking at disability as something negative, as a problem (for a society) and a
disaster (for an individual).
The Action Plan rightly puts the focus on mainstream instead of special. In most of the cases,
accessible mainstream services can address all the issues affecting persons with disabilities
and special solutions should become the exception.
Another of the consequences of this Action Plan should be that states adopt comprehensive
anti discrimination legislation. A good example on this can be found in Serbia.
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However, there are some elements in the Action Plan, notably in its action line on legal
protection, which would benefit from a revision in view of the final Convention text. This
might be done in the context of the mid-term review foreseen in the Action Plan.
The Council of Europe Action Plan on disability does not include a definition of disability or
persons with disabilities. During the drafting process, this issue was discussed, but it was
felt that it would not be possible to arrive at an acceptable definition. However, the UN
Convention includes a definition which sets a minimum threshold for countries.
The key advantage of having a definition of disability is to ensure that all persons with
disabilities and especially those that are faced by the most striking human rights violations
are covered by the Action Plan and the UN Convention.
One of the great challenges ahead and one of our main concerns is to ensure that the Council
of Europe Action Plan will really have an impact on the lives of persons with disabilities.
It is important that the Action Plan is monitored by the different Council of Europe bodies,
but it is also important that there is a focal point in the Council of Europe which will coordinate and promote this.
The provision of technical assistance to governments and representative disability
organisations from some of the least developed Council of Europe member states might be a
valuable contribution to the implementation of the Action Plan.
Finally, EDF would like to encourage all governments to increase the presence of
representatives from the organisations of persons with disabilities in the delegations they
send to Council of Europe meetings.
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WORKSHOP 1
INTEGRATION OF PEOPLE WITH DISABILITIES, INCLUDING CHILDREN,
INTO SOCIETY
Chair: Mr Bjørn BREDESEN, Deputy Director General, Ministry of Children and
Equality, Norway
Universal Design as a strategy to promote integration within the community
Mr Sigmund ASMERVIK,
Professor in Spacial Planning
Norwegian University of Life Sciences (UMB)
Ås, Norway
Abstract
The presentation will start with a short comment on the origins of the concept of Universal
Design. With its roots in the USA, it has been developed as an alternative to the concepts
accessible and accessibility. In Europe concepts such as inclusive design and design for all
are often used.
The presentation will then examine the crucial shift in the way we view the disabilities of
persons with reduced functionality, which occurred early in the 1990s. This was a shift from
looking at the issue as a matter of medical and social support for individuals with an
impairment, to looking at it as a matter of rights, from a client position to a civil rights
position. Universal Design is the design of products and environments to be used by as
many people as possible and to the greatest extent as possible, without any need for
adaptation or specialized design. The intention of Universal Design is to simplify life for
everyone by making products, communications and the built environment more usable for
as many people as possible at no extra cost. I would just like to remind you of the wellknown seven principles of Universal Design without going into more detail here. The
principles are:
1.
2.
3.
4.
5.
6.
7.
Equitable use
Flexibility in use
Simple and intuitive
Perceptible information
Tolerance for error
Low physical effort
Size and space for approach and use.
Universal Design benefits people of all ages and abilities, children, grown-ups and the
elderly, and of course both sexes and people with different grades of impairment. The
presentation will also discuss the concept of Universal Design from different points of view,
such as attitudes, knowledge and competence.
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I find it appropriate to comment on other dimensions when discussing design for everyone,
such as the effects of legislation and building codes, good and bad design and the equal
right to access for all people.
The development of disability legislation in various countries over the years has a very clear
focus on the topic of rights. During the last ten years most of this legislation refers to the
United Nations Declaration on Human Rights. The discussions on the topic of rights versus
the topic of responsibility are also very relevant to the issue of Universal Design. The
presentation will also comment on the legislation in this area in countries such as the USA,
Australia and Norway.
Presentation
The Concept
With its roots in the USA, the concept of Universal Design has been developed as an
alternative to the concepts accessible and accessibility. The concept of Universal Design
evolved through two related movements that had the aim:
to erase the we - they dichotomy
to meet the needs of consumers.
The first movement points out that we are all more or less handicapped at some point in our
lives, as children, as visitors in a foreign culture or as an older person with reduced
functionality. The need of consumers to avoid danger, items that fall to pieces and buildings
that do not work is also very easy to understand.
A new paradigm
There has been a crucial shift in the way we view the disabilities of persons with reduced
functionality, which occurred early in the 1990s. This was a shift from looking at the issue as
a matter of medical and social support for individuals with one kind of impairment or
another to looking at it as a rights issue, from a client position to a civil rights position. This
is quite evident in the USA, where we can see a clear reference to the Civil Rights Act from
1964.
The background and current needs of the UN Standard Rules on the Equalization of
Opportunities for Persons with Disabilities, from 1993, are of great importance for
understanding this paradigm shift. The UN standard rules state that there are persons with
disabilities in all parts of the world and at all levels in every society. The number of persons
with disabilities in the world is large and is growing.
Both the causes and the consequences of disability vary throughout the world. Those
variations are the result of different socio-economic circumstances and of the different
provisions that states make for the well-being of their citizens.
The University of North Carolina has developed seven principles of Universal Design:
1. Equitable use
2. Flexibility in use
3. Simple and intuitive
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4.
5.
6.
7.
Perceptible information
Tolerance for error
Low physical effort
Size and space for approach and use
Let us take a closer look at these seven important principles:
Equitable Use. The design is useful and marketable to people with diverse abilities. For
example, a professor's website that is designed so that it is accessible to everyone, including
students who are blind and using text-to-speech software, employs this principle.
Flexibility in Use. The design accommodates a wide range of individual preferences and
abilities. An example is a museum, visited on a field trip for a course, that allows a visitor to
choose to read or listen to the description of the contents of a display case.
Simple and Intuitive. Use of the design is easy to understand, regardless of the user's
experience, knowledge, language skills or current concentration level. Science laboratory
equipment with control buttons that are clear and intuitive is an example of an application
of this principle.
Perceptible Information. The design communicates necessary information effectively to the
user, regardless of ambient conditions or the user's sensory abilities. An example of the
application of this principle is when multimedia projected in a course includes captions.
Tolerance for Error. The design minimises hazards and the adverse consequences of
accidental or unintended actions. An example of a product applying this principle is
educational software that provides guidance and background information when the student
makes an inappropriate selection.
Low Physical Effort. The design can be used efficiently and comfortably, and with a
minimum of fatigue. Doors to a lecture hall that open automatically for people with a wide
variety of physical characteristics demonstrate the application of this principle.
Size and Space for Approach and Use. Appropriate size and space is provided for approach,
reach, manipulation and use regardless of the user's body size, posture, or mobility. A
flexible science lab work area designed for use by students who are left or right-handed and
with diverse physical characteristics and abilities is an example of employing this principle.
Legislation in the USA
During the last decade there has been consensus on the belief that nations with special
legislation addressing the needs of people with reduced functionality have obtained the best
results. And the focus, here, has very much been on the effect of the ADA in the USA.
In 1990, the ambitious legislation called the Americans with Disabilities Act, now commonly
known as the ADA, was passed into law by Congress.
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The ADA recognises and protects the civil rights of persons with disabilities and is modelled
after earlier landmark legislation prohibiting discrimination on the basis of race and gender.
The ADA covers a wide range of disabilities, from physical conditions affecting mobility,
sight, hearing and speech to conditions such as emotional illness and learning disorders. The
ADA addresses access to the workplace:
•
Title I refers to state and local government services.
•
Title II refers to places of public accommodation and commercial facilities.
•
Title III requires phone companies to provide telecommunications relay services for
people who have hearing or speech impediments.
•
Title IV has miscellaneous instructions for the federal agencies that enforce the law.
•
Title V contains regulations issued under the different titles by various federal
agencies. These set requirements and establish enforcement procedures. To
understand and comply with the ADA, it is important to follow the appropriate
regulations.
The ADA procedure proposed that the first step would be a comprehensive survey,
followed by a transition plan to be in place by 1992 and a self-evaluation document by 1993.
These requirements initiated a wide range of consultancy activities, from giving continuing
education courses on the ADA guidelines, to providing legal advice and helping to draw up
the necessary documents.
Establishing, implementing, maintaining and developing new ways of thinking and new
ways of acting takes time in any culture. It took about a hundred years from when Abraham
Lincoln announced a new policy regarding slavery until the Civil Rights Act was adopted in
1964. And it took another 26 years before Congress adopted the ADA in 1990. And twelve
years after this, many voices in the disability community were disappointed with the results
that had been achieved to that point with the ADA. Being patient and impatient at the same
time aptly describes the situation of developing the ADA in the USA.
Without very active individuals both within and outside the disability community we
would never have seen the results we are witness to today. Examples here are the Centre for
Independent Living in Berkeley, established due to the pressure applied by groups and
individuals together with many other independent centres in the US. People such as Judy
Heumann, Ed Roberts and Kitty Cone remind us of the importance of outstanding and
persistent individuals. An example of a pivotal action is the sit-in which was held in the
Federal Health, Education and Welfare Building in San Francisco in 1977 to have section 504
of the Rehabilitation Act of 1973 complied with and adopted. Nothing seems to come of
itself without having to fight for it.
When I talk with people all around the country these days it appears to me that the
principles behind the ADA are generally accepted, the question is now not primarily why,
but how, when and where.
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Legislation in Australia
Australia has gone about developing interesting legislation dealing with human rights in a
different way than in the USA. The Human Rights and Equal Opportunity Commission has
a central role in this. This commission is a national independent statutory government body,
established in 1986 by an Act of the Federal Parliament, the Human Rights and Equal
Opportunity Commission Act. The Federal Attorney General is the Minister responsible in
Parliament for the commission.
The commission has the authority and responsibility to inquire into alleged infringements
under three anti-discrimination Acts – the Racial Discrimination Act of 1975, the Sex
Discrimination Act of 1984 and the Disability Discrimination Act of 1992, as well as inquiring
into alleged infringements of human rights under the Human Rights and Equal Opportunity
Commission Act of 1986.
Matters which can be investigated by the commission include discrimination on the grounds
of race, colour or ethnic origin, racial vilification, sex, sexual harassment, marital status,
pregnancy or disability.
The Disability Discrimination Act of 1992
Australia's Disability Discrimination Act ("the DDA") bill was submitted to the Federal
Parliament on 26 May 1992. The then Deputy Prime Minister, Mr Howe, commented on the
Act when it was approved:
"The Bill will assist all people with disabilities to exercise their rights as Australian citizens
and represents a landmark in achieving human rights for all Australians. People with
disabilities are entitled to the same rights and the same opportunities as all other Australian
citizens. However, our society currently falls well short of realising this ideal. People are still
subjected to discrimination purely on the basis of disability - discrimination which, I am sure
all honourable members would agree, is socially damaging, morally unacceptable and a cost
to the whole community … The Disability Discrimination Bill will be instrumental in
continuing social change and will have far-reaching and long-awaited effects for people with
disabilities."
Being part of the British Empire, Australia has, needless to say, inherited much of the British
legislative principles based on unwritten or common law. Very often the legislation in such a
tradition is adapted to a common understanding of what is right and wrong. We often find
that communities like this put more trust in the local community than Acts and regulations
introduced by the state authorities. To understand the effect of the Australian antidiscrimination Act we have to bear this in mind.
The DDA came into force in March 1993. Ten years later thousands of individuals and
organisations have used the DDA to induce change, by lodging complaints about
discrimination, using the Act as a basis for negotiating broad social change and educating
organisations on their responsibilities. Beyond a doubt there have been many achievements.
Work in Norway
In Norway, we have also been influenced by the above-mentioned paradigm shift. A very
important report (NOU) from 2001 called, From User (Client) to Citizen, is a good example of
69
this. In addition to proclaiming the need for a special anti-discrimination Act, the report
called for access for all to:
•
•
•
Buildings
Transportation
ICT.
Another report from 2005 has followed up these proposals asking for a special antidiscrimination Act, and is now being put into law by the Norwegian Government.
The Norwegian Government has also produced a special Action Plan for increased
accessibility for persons with disabilities. This plan has a special focus on Universal Design in
key areas and is in force from 2005 to 2009. The goal and strategy of this Action Plan is to
achieve satisfactory accessibility on a permanent basis. This implies that all members of society
will have an equal right and opportunity to develop personally, to participate in society.
The way ahead
From my positions as an appointed member of the Norwegian State Council on Disability
and an advisor to the Norwegian Government over the last seven years, I see very clearly
that we are making great progress in this area. Many political documents argue that
Universal Design should be the principle for planning, building and organising Norwegian
society in a way that better integrates people with disabilities. Nonetheless, we have a long
way to go. There is a gap between political statements and concrete action. In my view, if we
are to make real progress we must focus on three areas:
•
•
•
attitudes
knowledge
competence
Still there are still many strange ideas out there about people who are not mobile, or cannot
see or hear as well as the majority. We find many suspicious attitudes that make it difficult
to integrate persons with a disability into working life.
There is also a lack of competence and knowledge among architects and engineers when it
comes to planning and building for all kinds of people.
In Norway, as in many countries in the world, we have a rapidly growing population of
elderly people, and many of these have, or will have, reduced capacities when it comes to
mobility, sight and hearing.
Many of the people in this group will be wealthy and will undoubtedly demand solutions
that are better adapted to their needs in daily life than what we have today. That could be
the impetus needed to push for more universal solutions in buildings and transport systems
and with ICT.
Rights versus responsibility
I believe the more general discussions on the topic of rights versus responsibility are highly
relevant when working with disability issues. The development of disability legislation in a
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number of countries over the years has a very clear focus on the rights issue. During the last
ten years most of this legislation refers to the United Nations Declaration of Human Rights.
But once you have obtained a right, the question of responsibility is not far behind.
Otherwise, we end up in time- and money-consuming court proceedings.
An extensive use of rights can sometimes be a feature of a young and not very mature
culture. In a more mature, and what I would like to call a more human, community, we will
find a common understanding of the various individual needs, and the need to continuously
demand one's rights is not so strong.
In such a community, values and ethics are more important, and here we find that there is
more focus on responsibility than on rights. I also wonder if the time has not come to also
start the discussion of a UN Declaration of Human Responsibility.
References:
Attorny-General’s Department, 2002, Disability Act 1992, Canberra
Brattstrom, M.: 1998, Likestilling for funksjonshemmede, sammenligning av ulike strategier i
Danmark, Norge, Sverige og Norge, Raadet for funksjonshemmede, Hovedrapport,Oslo
Brattstrom, M.: 1998, Politikk og lovgivning for funksjonshemmede i USA, Raadet for
funksjonshemmede,Delrapport 3,Oslo
City of San Francisco, 1989, General Plan, Down Town
Center for Independent Living, 2002, 30th Anniversary celebration, Berkeley
Department of Justice, 1990, Americans with disabilities Act of 1990, Washington DC
Howe, E.: 1990, Normative Ethics in Planning, Journal of Planning Literature, Vol. 5, No. 2,
Sage Publ. Inc.
Human Rights and Equal opportunity Commisssion, 2002, Annual Report, 2001-2002,
Sydney
MIT, 1999, Handbook for Students with Disabilities, Massachusetts Institute of Technology,
Disabilities Service Office.
NOU 2001:22, Fra Bruker til borger, Oslo
NOU 2005:8, Likeverd og tilgjengelighet Rettslig vern mot diskriminering på grunnlag av
nedsatt funksjonsevne , Oslo
The Institute of Arbitrators & Mediators Australia, 2001, Mediation and Conciliation Rules,
Nov. 2001, Sydney
U.S. Access Board, 1994, Laws Concerning the Access Board, Washington DC
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U.S. Access Board, 1998, Accessibility Guidelines for Buildings and Facilities
(ADAAG), Washington DC
U.S. Access Board, 2002, Access Currents, Volume 8 No. 4, Washington DC
U.S. Access Board, 2002, Update on Access Board Rulemaking, Washington DC
72
Sport, culture and other leisure activities as a strategy to promote the integration
of people with disabilities
Dr Igor VYKHODETS
Deputy Head of Division of the Federal Physical Culture and Sports Agency, Russian
Federation
Most esteemed conference participants! Colleagues! Ladies and gentlemen!
It is a great honour for me and a great pleasure to present a paper to this conference on
behalf of the Federal Physical Culture and Sports Agency.
I would like to thank the conference organisers for their concern about the problems faced
by people with disabilities and for the enormous contribution made to improving the quality
of life for people with disabilities in Europe, facilitating their full integration into society and
all its spheres, and for the work done to eradicate discrimination against them.
The problem of disability is a global one that affects every country, regardless of its level of
economic development. This is why one can judge how civilised a country is by looking at
the social policy it pursues with regard to people with disabilities.
My paper, which I am presenting as a representative of the state authority responsible for
the development of physical culture and sport in Russia, will touch on issues of getting
people with disabilities involved in physical culture and sport, and the problems of
involving people with disabilities in active sport and integrating them fully into society
through physical culture.
The health of the population is something the Russian Government takes particularly
seriously. One of the Russian Federation’s current national projects addresses the issue of
health and promotion of a healthy way of life. In his annual address to the Russian
Federation’s Federal Assembly, the Russian President Vladimir Putin made a particular
point of emphasising the question of the health of the Russian people.
I should make it clear that the ideal of health as a crucial factor in the quality of life and in
national prestige is one that is already being promoted in the Russian Federation. It is
through regularly engaging in physical culture and sport that good health is constituted and
sustained. Sport and health are, after all, factors in the sustainable development of society;
they are indicators that characterise the condition and potential of an individual, a nation
and the country as a whole.
It has been confirmed by scientific and statistical research that people who actively and
regularly engage in physical culture and sport are 1.5 times less likely than those who do not
to suffer from fatigue, 2 times less likely to suffer from digestive system ailments, 2.5 times
less prone to high blood pressure and 2 times less afflicted by respiratory diseases. The
upshot is that people actively engaged in sport have a 2.3 times lower rate of absence from
work on health grounds. There is no question that an intensification of mass-scale physical
culture and sport would have enormous economic and social benefits.
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In recent times, awareness of the need to support sport for the masses and heavily promote
physical culture and sport as a component of a healthy lifestyle, and also to develop toplevel sport, has been growing at all levels of state administration. If citizens’ health, wellbeing and quality of life are to improve, there is no doubt that government and social
structures will have to focus on resurrecting sport and physical culture for the masses, and
this should include sport for people with disabilities.
There is a steady trend towards increasing state support for sport and physical culture in the
Russian Federation. Increased funding on the federal and regional levels each year, new
legislative provisions, the promotion of sport and increased activity on the part of public
sporting organisations are all indicators of that trend.
In 2006, the Russian Federation Physical Culture, Sports and Tourism Agency (Rossport) set
about implementing a targeted Federal programme on “Development of physical culture
and sport in the Russian Federation for the period 2006 – 2015”, which had been ratified by
the Russian Government. One of the aims of that programme was to improve the health of
Russian Federation citizens and extend life expectancy; another was to give the majority of
the population the opportunity to engage in physical culture and sport, especially those in
underprivileged categories (people with disabilities, elderly people, orphaned children and
so on). Funding amounting to more than 100 billion roubles was planned to implement this
programme, including over 40 billion roubles dedicated to mass sport, which covers sport
for people with disabilities.
This programme envisages the construction of 1,467 multi-functional halls, 733 indoor
swimming-pools and 733 sports stadiums
Implementation of the Programme is expected to lead up to 30% of the population (all
categories) engaging in some type of physical culture by 2015, with a rise among people
with disabilities from 1.5% to 16% (an annual increment of 1.5-2%). Provision will also be
made to improve access to sport for categories of citizens, which will include the
development and application of a mechanism allowing less well-off citizens (students,
people with disabilities, elderly people etc.) reduced-cost or free entry to sports facilities.
All of the aforementioned initiatives most certainly relate to physical culture and sport for
Physical culture and sport are well known to be very important for people with disabilities.
A physical or mental impairment can make it difficult or impossible to have contact with the
surrounding world. Inferiority complexes can develop as a result, with people shutting
themselves off and feeling unwanted. Active engagement in physical culture and sport
restores mental condition and gives people with disabilities the opportunity to return to an
active life and become integrated into the social and public life.
Russian Federation Government policy in the sphere of rehabilitation and social adaptation
of people with disabilities through physical culture and sport is built on a systematic
approach and incorporates the following tasks:
Developing an adequate structure for state and public administration of physical
culture and sport for people with disabilities
Developing and upgrading the legislative and regulatory base
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Creating conditions for people with disabilities to engage in physical culture and
sport at sports clubs, sports schools for children and young people, health centres
and sports facilities
Developing a material and technical base to enable people with disabilities to get
involved in sport
Organising information and publicity work aimed at widely involving people with
disabilities in active physical culture and sport
Training highly-skilled staff to work with people with disabilities
Creating modern methods and programmes to support the process of physical
education and training for sportsmen with disabilities
Developing scientific and medical back-up for sport practised by people with
disabilities
Creating conditions enabling sportsmen with disabilities to train and take part in
competitions.
The total number of people with disabilities of all groups and categories in Russia,
calculated using the international counting method, is about 15 million. Each year more than
600 000 people are registered as disabled for the first time, and more than 50% of these are
people of working age.
One of the main trends in the development of physical culture and sport for people with
disabilities is the development of a network of physical culture and sports clubs. This way of
organising physical culture and sport allows people with disabilities to engage in these
activities regularly and in large numbers.
Data gathered by the Federal government through a statistical survey carried out using form
No. 1-FK “Information on physical culture and sport” in Russia in 2005 showed that there
were 1 210 organisations in the country engaged in adaptive physical culture, of which 545
were physical culture and health clubs and 134 were institutions offering further education
in adaptive physical culture and sport.
In these organisations, 206 000 people were involved in adaptive physical culture and sport,
which is nearly 8 000 up on 2004. They were being looked after by 2 200 full-time adaptive
physical culture staff.
The development and setting-up of sports and health schools for children and young people
with disabilities is regarded as especially important. There are more and more of them with
each passing year, set up and operating in many of Russia’s regions. It should be stressed
that the desire of children with disabilities to take part in sport has significantly increased in
recent years; but the potential to organise these activities remains limited. Sports schools for
children and young people lack sections catering for those with disabilities, and there are
not enough specialist sports schools.
The main reason for this situation lies in the lack of a legislative and regulatory basis for the
opening of such schools and sections. The Russian Government is currently considering a
draft Federal Law tabled by Rossport “On physical culture and sport in the Russian
Federation”, containing provisions aimed at creating favourable conditions in Russia for
developing an environment and infrastructure promoting physical culture and health for
people with disabilities, expanding the network of rehabilitation centres making use of
physical culture and sports methods, and creating favourable conditions for people with
disabilities, including children.
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One problem holding back the development of physical culture and sport among people
with disabilities is the lack of conditions enabling people with disabilities to make use of
physical culture and sports facilities. Many of the sports facilities built many years ago are
simply not equipped to offer sport for people with disabilities. Provisions respecting the
interests of people with disabilities are now integrated in construction standards and
regulations.
Under the aforementioned targeted Federal programme titled “Development of physical
culture and sport in the Russian Federation for the period 2006 – 2015”, implemented by
Rossport, there is provision for the construction of a significant number of physical culture,
health and sports facilities throughout Russia. The designs being considered incorporate the
potential for people with disabilities to engage in activities at these facilities, and the
standard projects that have been ratified meet the most up-to-date demands for sports
facilities, including provisions for people with disabilities.
Every building and facility visited by both able-bodied people and people with disabilities
should, after all, be designed and fitted out in such a way that a person with disability does
not feel sensitive about his/her physical or other impairment and has freedom to move
about and the opportunity to exercise what motor potential he/she possesses. In this aspect,
sports facilities neutralise, reduce or limit the infliction of social harm and help in the
rehabilitation and integration of people with disabilities.
There is strong emphasis on training highly-skilled staff specialising in working with people
with disabilities, including trainers, teachers and instructors.
Physical culture and sport for people with disabilities are currently represented in the
secondary and tertiary vocational training system in the Russian Federation and in the form
of a specialist subject for scientific employees, as a sphere of occupational activity
(teacher/trainer and methods instructor for adaptive physical culture). The specialist subject
of “Physical culture for people with impaired health (adaptive physical culture)” in tertiary
vocational training was first ratified in Russia in 1996, followed in 2001 by ratification for
secondary specialist education.
Adaptive physical culture is the area of physical culture for people with health impairments,
including people with disabilities. It comprises activities and their socially and individually
significant results in creating a general level of life preparation in people with health
impairment, including people with disabilities; optimisation of those people’s condition and
accompanying development of comprehensive rehabilitation and social integration; it also
comprises the methods and means of upgrading and harmonising all aspects and qualities
of the personality of a disabled person through physical exercise and sport, and providing
them with the capacity to live life in the style enjoyed by people who develop normally.
Specialists in adaptive physical culture are in demand at government-run and nongovernmental institutions and organisations in which people with health impairment,
including people with disabilities, live, work, receive treatment, rest, train or compete.
As of 1 January 2006, there were more than 120 study and scientific institutions coming
under various Russian Federation authorities that were engaged in training staff for physical
culture and sport. Rossport looks after 13 higher education institutions, 19 specialist
secondary colleges and 2 scientific research institutes. Specialists in adaptive physical
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culture are being trained at over 30 higher education institutions and specialist secondary
colleges, with over 300 specialists graduating each year, though this is still not sufficient for
the whole country.
The organisation and running of physical culture and sports events for people with
disabilities is one of the more important components in the development of physical culture
and sport for people with disabilities.
Rossport includes sections devoted to sport for people with disabilities in its Consolidated
Calendar Plan for competitions at the Russian and international levels. Under this plan,
more than 100 Russian and 70 international competitions are held each year for sportsmen
and sportswomen with impaired hearing, sight or intellect or impairments of the locomotor
apparatus.
Rossport supplies funding for sports events involving people with disabilities out of
resources made available for that purpose from the federal budget. The scale of funding is
determined on the basis of proposals from the Paralympic and Deaflympic Committees and
Federations for various sports as practised by people with disabilities. The funding is used
for Russian and international competitions, centralised training gatherings, medical and
scientific provision and sporting events in the Special Olympics series.
This is a list, albeit by no means a full one, of the sports for people with disabilities that are
cultivated in Russia:
•
•
•
•
•
•
•
•
•
•
•
•
•
•
•
•
•
•
•
•
•
•
•
•
•
Arm sports
Badminton
Basketball
Bowling
Road cycling
Volleyball
Freestyle wrestling
Downhill skiing
Greco-Roman wrestling
Curling
Mixed events
Equestrianism
Track and field athletics
Cross-country skiing
Table-tennis
Power lifting
Swimming
Small-arms shooting
Sports orienteering
Archery
Tennis
Football
Hockey
Chess
Draughts
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More than 200 000 people in the Russian Federation are involved in Paralympic sports, and
over 1 200 sports and health clubs have been set up to unite people with limited motor
activity.
Paralympic sport, as a factor in recuperation and the shaping of a healthy lifestyle, helps to
prevent disabilities spreading among the population. Use of physical culture and
paralympic sport has been an effective, and in some cases the sole means of physical
rehabilitation and social adaptation for people with disabilities. Working with people who
have mental and physical impairments is an effective way of humanising society itself.
Where top-level sport is concerned, Rossport works closely and co-operates with the
Russian Paralympic Committee, the Deaflympic Committee, the federations representing
sport disciplines for people with disabilities and the Special Olympic Committee. One
sphere of common interest is the process of supporting training and appearances by
Paralympic and Deaflympic national squads at international competitions and at the
Paralympic and Deaflympic Games.
One result of this interaction and the support given to sport for people with disabilities by
the government may be seen in the successful appearance of the Russian national team at
the IXth Winter Paralympic Games held in Turin in 2006, where the Russian team finished
first overall, having won 13 gold, 13 silver and 7 bronze medals.
At a meeting of the Executive Committee of the Russian Paralympic Committee held a few
months ago, the Programme for the Development of Paralympic Sport in the Russian
Federation during the period 2006-2010 was adopted. This Programme sets out a
comprehensive approach to strengthen the development of paralympic sport and identifies
the measures required, and also addresses the issue of attracting people with disabilities into
active involvement in physical culture and sport. Implementation of this Programme with
direct financial and organisational support from the government will make it possible to
improve the situation of people with disabilities in Russia, give them a better quality of life
and have more people with disabilities involved in an active lifestyle and fully integrated
into society.
The state supports and finances medical and scientific provision for paralympic sport. In 2004,
general scientific groups for paralympic sports were first set up at the St Petersburg Research
Institute for Physical Culture and Sport. The work of these groups is fundamentally different
from the provision made for top-level sport as practised by able-bodied sportsmen and
sportswomen. Bearing in mind the contingent of athletes with disabilities and their
differences, a group of scientists has drawn up special programmes of medical and scientific
investigation tailored to each group of athletes with disabilities, taking into account all the
idiosyncrasies and nuances of their training.
KNG for paralympic sports:
Power lifting, swimming, track and field athletics, skiing, biathlon, judo
Other topical issues concern legal guarantees for social protection as applied to athletes with
disabilities. Although there are currently 16 laws and more than 60 government resolutions
and presidential decrees in effect in Russia intended to improve the situation of people with
disabilities, and a number of federal programmes have been adopted, for example “Social
support for people with disabilities for 2000-2005”, “Scientific support for the problems of
people with disabilities and computerisation” and so on, many serious questions regarding
78
the legal guarantee of social protection measures for sportsmen whose health is impaired
remain unresolved.
An expert assessment tells us that of the 15 million people with disabilities in Russia, about
600 000 were once involved in sport and have had their health damaged as a result of sports
injuries and illnesses with a fairly evident link to the conditions under which they practised
their sport. While there are about 600 rehabilitation centres, 42 specialist primary, secondary
and occupational educational institutions, 11 colleges and 31 technical academies in today’s
social protection system, virtually none of these specialist institutions is oriented towards
restorative therapy for people with sports-related disabilities and their employment and
social rehabilitation.
To sum up, the point may be made that the purpose of involving people with disabilities in
active physical culture and sport is to achieve the maximum possible development of the
person’s vital functions through providing him/her with the optimum regimen for the
functioning of what bodily movements and spiritual strengths nature has provided and to
harmonise these to achieve maximum self-expression as a socially and individually
significant entity, integration into society and a better quality of life.
Further significant expansion of the scale of physical culture and sports work with people
with disabilities is needed, so that each person with disability would have the opportunity
to engage in physical culture and sport.
Further development of physical culture and sport among people with disabilities is a longterm strategic task facing the Russian State, and one of the priority areas of work for
Rossport, which is geared to achieving physical rehabilitation and social adaptation for
people with disabilities, providing access for such people to places where physical culture
and sport are practised and broadening opportunities for people with disabilities to get
involved in sports events and in Russian and international competitions.
To conclude, I would like to add that the city of Sochi has submitted a bid to host the 2014
Winter Olympics and has become a candidate to run them. A programme to build Olympic
sports facilities in Sochi has been drafted, and these will also allow for sports included in the
paralympic programme. Without doubt this will serve as a powerful incentive for the
development of sport for people with disabilities in Russia, as the Paralympic Games,
coming straight after the Olympics, will act as a stimulus for the development of paralympic
sports in this country.
Thank you for your attention!
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Good care for people with disabilities child also depends on parents’ ability to
take care of themselves as a couple
Ms Marianne BIE,
Family Therapist and Clinical Nurse Specialist,
Baerum Outpatient Clinic for Child and
Youth Psychiatry,
Baerum, Norway
Abstract
The paper is a presentation of a national programme based on a three-year national
developmental project (2002-2004).
The experience is that there has been focus on, and efforts to help, the child with a disability
but less focus and help to the whole family, including the couple relationship and the
siblings.
The research background is a qualitative project involving 17 couples with a disabled child
at home. Each couple was interviewed 4-6 times over 1-2 years, each interview lasting
2-3 hours. The main focus was on family life and the couple’s relationship.
The programme is initiated and financed by The Ministry of Children and Families. The
intention is to increase competence and co-operation among professionals involved, and
establish couple workshops for parents with children with disabilities.
The programme organises continuing education for family therapists and other health
professionals about families with children with disabilities, and supports them in building
networks. For the parents the project develops, implements and evaluates two formats of
workshop (one-day and week-end) focusing on couple relationship and sharing experiences,
and helps establish local infrastructure all over Norway initiating these workshops.
The programme is evaluated continually. The results so far will be presented.
Presentation
In order to improve the quality of life of children with disabilities our statement is that
“Good care for people with disabilities child also depends on parents’ ability to take care of
themselves as a couple.”
I am clinical nurse specialist and family therapist.
I have been working in the field with families with disabled members since 1980. I have been
in the leader team of this project and have also been responsible for couple workshops and
training programmes for professionals.
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Background and needs
As far as we know from research and statistics, there is no clear tendency of more frequent
divorce in families with a disabled child, than in other families. There is however no doubt that
being parents to a child with a disability, gives extra challenges to family life and to the parents’
relationship.
Problem statements
We had two problem statements when starting the work in this project:
1. How can we create a good programme and good content in the workshops?
2. How can we disseminate the invitations to couples all over the Norway?
Parent roles and couple role influence each other. We are often told that the couple
relationship has a low priority in daily life, because of lack of time, care for the child with a
disability and their other children, daily work and contact with professionals concerning the
child.
Norway is definitely a prosperous and affluent society. We also like to think we are quite
enlightened. There are however still taboos. To have a child with a disability is in a way one
of them. Some parents live in a situation of painful grief and never come beyond it. Some
feel guilty for the child’s disability.
By holding local workshops, it was possible to reach larger parent groups.
The workshops are usually held in a hotel over a weekend. It gives the couple an
opportunity to relax and hopefully get inspiration to their relationship.
Usually there are about ten couples in each workshop. During the weekend the couples are
nvited to a journey in themes concerning couple life.
We use poems, music and songs besides our short introductions to each theme. The couples
are given exercises to each theme which gives them opportunity to talk through important
topics with each other.
An important part is sharing experiences with the other couples. They tell part of their life
stories as parents to a child with a disability and the others become in a way witnesses to
their stories, and confirms with telling similar stories.
I want to show a programme for a weekend course, to give you an idea of the content:
HVA MED OSS? (What about us)
- A project of the parents’ relationship in families with children with disabilities
FRIDAY WE GET TOGETHER
We try to make a good atmosphere with music and perhaps flowers and candles. The group
sits in a half circle, without tables. We are two course leaders, a man and a woman. The first
evening, the most important thing is to make the group feel comfortable. Many are a little
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insecure of what kind of weekend it will occur to be. Some are afraid it is a kind of family
therapy.
We starts with welcoming the group, present our self and try to give a verbal appetizer for
the workshop with music, poems, and quotations.
The couples present themselves and talk about their family. After that we have dinner.
SATURDAY A DAY ABOUT COMMUNICATION, CO-OPERATION AND FEELINGS.
We start with
• “How to preserve a good and stable couple relationship?”
We focus on love, to see and confirm each other and the importance of good communication.
We also points out four key patterns that can harm a relationship
1. Escalation. One word takes another
2. Invalidation. Painful put-downs
3. Negative interpretations: When perception is worse than reality
4. Withdrawal and avoidance:
We often make role-plays to illustrate these key patterns
FEELINGS AS LOSS AND GRIEF
In this part we give such an introduction about this topic, but also invite the parents to share what
kind of difficult feelings they have experienced.
They tell about shame, guilt, other people’s reaction, the mixed feeling and loneliness.
We try to include good feelings also, and try to help to get a perspective on life. It is important to
support the mastery stories.
We uses time to talk about grief, when the parent group is open for it I often introduce the theme like
this:
THE FORBIDDEN GRIEF
When you have a child with disability, the joy over the living child, will be mingled with the grief over
the “child of your dreams”, that you didn’t have.
Gurli Fyhr has called this the “Forbidden grief”.
As parents, it is important to make a stop and recognise and honour these feelings of dreams
and missing, think about what I as a mother or father could have given the child if everything
had been normal.
The sorrow over the child’s reduced life and pains are another sorrow. Maybe also the
conciseness about the child’s prognosis, the uncertainness of whether the child will grow up.
Grief has different faces and ways of expression. Parents I have been talking with have told
me about crying, anger and frustrations that some feel inside whereas others have to work
hard and be constantly active.
For the parents different expressions of grief can be hard to understand and cope with.
For some parents the grief can be locked in and stop the grief process with an unhealthy
explanation, and make it difficult to process.
Grief is a kind of work.
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In the life of a couple it can be important to ask oneself a question about, how am I when I
am in grief?
How is it for my partner to be together with me?
What will he recognise, what will he see, what will he miss?
What is the grief doing with us as a couple?
Our expressions for grief are different and can provoke each other. Grief is also a very lonely
process, and people in grief have less energy to care about others. In a couple relationship it
can be discussions about who is most worn out, and who has the most right to be in grief.
A father I have interviewed tells about the situation having recently been told how mentally
retarded the child was.
“When we went home again we were quite on edge, and it lasted for a long time, I think at
least for half a year.”
Others tell it takes much more time. A part of the grief will always be there. How long it
takes depends on earlier experiences, expectations and if one goes into a process of grief
work or comes to neglect it.
The parents aren’t always at the same place at the same time, in the grief process, one
mother expressed it like this to her husband: “You were very optimistic compared with how
I was feeling. I remember the situation more pictorial and symbolic, a more black and
unhappy life. I couldn’t see the future, what kind of girl Ann was going to be. I cried a lot in
work, and when a colleague came into my office I was sitting there with tears in my eyes. It
was like this for a long period.”
A mother says: “It is really difficult to explain your own daily life, when making
applications for help. It is so hard and you sit there crying, because you see itself. ”From the
process from grief and despair to a more coping way of living, people have to live through
different stages. It can be anger, neglecting, protection, and acceptance.
But in between the grief process, there are also golden moments when you see life in another
perspective, recognize your own strength and the power inside yourself.
A mother of a critically ill child expresses it like this:
“She lay in hospital after the operation, on a respirator. When I came down, I had a strange
feeling, it was something I remarked, if you believe, or don’t believe in something higher
than yourself. But it was something inside me, something, I remember very clearly. A
power, and I felt it moved inside me.”
In the polarity between grief and mastery, the hope is the carrying power.
•
Tools for communication and problem-solving.
Here we offer a tool, a Speaker-Listener Technique which is an alternative mode of
communication when issues are hot or sensitive, or when they are likely to get that
way.
There are rules for the speakers and rules for the listener.
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Rules for the speaker:
1. Speak for yourself. Don’t try to be a mind reader
2. Don’t go on and on
3. Stop and let the listener paraphrase.
Rules for the listener
1. Paraphrase what you hear
2. Focus on the speaker’s message. Don’t reproach.
Use something as a microphone. Change between being speaker and listener.
•
•
•
•
•
Coffee break and walk and talk theme
Men and women, two different worlds?
Reflections on the day
Here we give an opportunity in plenary session, to share thoughts and experiences
during the day. We as leaders of the workshop, get an opportunity to catch up on
how the participants feel and react, and we can give support in different ways.
Dinner and social settings.
SUNDAY - A DAY ABOUT PSYCHOLOGICAL SPACE IN LIFE, FORGIVENESS AND
FRIENDSHIP
•
•
Welcome to a new day, with listening to a song and a poem.
How can we create psychological space for all members of the family?
A space for the whole family
All members of a family sometimes need time for themselves. Most of us experienced when we
decided to have a child, that we entered into a new period of life when there would be
insufficient time, both for the individual activities we used to have, but also for the activities
together that we used to have as a couple.
Parents with healthy children know that this situation of time-consuming care will come to
an end after some years, but parents with children with disabilities do not know when – or if
ever – this time will come.
In the weekend workshops we therefore put an emphasis on this issue. The parents are
encouraged to share thoughts about:
1. How the adults as individuals, within the framework of the time they have actually
got, can make a space for themselves, and do pleasant things like go to a football
game with friends, see a movie, exercise or run, go swimming etc.
2. How the adults as a couple can take care of their relationship as friends and lovers.
How is their history? What did they like to do as lovers before they became parents?
What did they like especially well about their partner when they first met? We also
talk about what kind of dreams they have as a couple about their common future.
3. How the adults can help each other to create a space for the whole family. If there are
other children in the family, how can the parents take care of them? They need to be
seen as well, even if they are healthy. They need to do things with their parents,
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sometimes the whole family including the sibling with a disability, and sometimes
alone with mum and dad.
4. How the parents can help create a good life for the child with a disability. Some
parents sacrifice all their energy to make the best for their child. Even if they do their
best, they must be aware of not making the child with disability the sole project of
life. Jesper Juul, the Danish psychologist and writer says in his latest book that being
someone’s total project is not good for a child.
We encourage the couples to discuss whether they can make any changes in their family life,
and whether they need to give each other more space. We try to inspire them to develop
some new reflections and some ideas about what can be done. By giving them a possibility
to talk to each other about how they experience this, some optimism is also shared.
•
When we disappoint each other
Open and disguised topics.
Here we show the difference between issue and events, how small episodes often
start a quarrel in the relationship, and which topics most couples quarrel about, such
as money, religion, sex, relatives, careers, children, alcohol, drugs
and which underlying hidden issues which often drive the really destructive
arguments. Hidden issues are:
Control
Commitment
Caring
Integrity
Acceptance
Recognition
Forgiveness
The couples are given an opportunity to speak together about this topic.
Then we have a session about the power and importance of forgiveness.
•
•
The importance of joy, fun and friendship
We want to end the workshop with this topic, to remind the couple of these qualities
in their relationship, and how to protect the friendship from conflicts. We play songs
about love and friendship and tries to focus on hope for the future.
Reflections at the end of the workshop. Evaluation, both oral and on an evaluation
form.
EXPERIENCES SO FAR – EVALUATION
We have experienced that our focus on the importance of the couple relationships for the
child, has legitimated the couple to give more priority to their relationship.
We do not know enough about the effects of this kind of workshop over time. It is
common for participants to comment that they wish a follow-up workshop or booster
session after a while.
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Statements from some of the participants are very powerful, like the young man who
said in the reflection at the closing session of the workshops, “this weekend I got my
girlfriend back”.
Another man said that he had finally listened to his wife; through the Speaker-Listener
Technique he had learned and practised.
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REPORT OF WORKSHOP 1
INTEGRATION OF PEOPLE WITH DISABILITIES, INCLUDING CHILDREN,
INTO SOCIETY
Chair:
Mr Bjørn BREDESEN, Deputy Director General, Ministry of Children
and Equality, Oslo, Norway
First Vice-Chair:
Ms Sophie JACQUOT-GAUTUN, Chair of the Council of Europe Ad
Hoc Group of Experts on Community Living (Deinstitutionalisation)
of Children with disabilities (P-RR-CLCD), Head of Office for
children with disabilities, Ministry for Solidarity, Health and Family,
France
Second Vice-Chair:
Mr Pavel ROJKOV, President of the Executive Committee, First ViceChair of the Russian Federation Paralympics Committee
Rapporteur: Professor Hilary BROWN, Professor of Social Care, Canterbury Christ
Church College, United Kingdom
Mr Sigmund Asmerik, (Professor in Spacial Planning, Norwegian University of Life Sciences
(UMB) AS., Norway) spoke on Universal Design as a strategy to promote integration within
the community
He spoke of this as a new paradigm which is sometimes referred to as “inclusive design” or
“Design for All”. It drew on two movements from the US, one to erase the dichotomy
between us and them which pushes “the” disabled into the position of “the other” and the
other strand in the thinking behind this way of thinking was to extend consumerism so that
people previously excluded are able to exercise choice in their day to day lives. The idea ties
in with the social model, which switched the focus of the disability community from a
medical model to a social model which examines the barriers created and perpetuated by
society which exacerbate the position of someone with an impairment, hence the
consequences of impairment varies according to the degree of accessibility in the society.
Seven principles are encapsulated in the terminology of Universal Design:
1.
2.
3.
4.
equitable use for people of diverse abilities
flexibility in use, i.e. that it accommodates a wide range of preferences
simple and intuitive, such as the use of pictograms
perceptible information, regardless of ambient background and user’s sensory
abilities
5. tolerance for error
6. low physical effort
7. size and space for approach and use, regardless of user’s body size, posture or
mobility
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The application of Universal Design has rested on clear legislation such as the Americans
with Disabilities Act (ADA) 1990 and Australia Disability Discrimination Act 1992. In
Norway 2001 a programme titled From client to citizen anti-discrimination in access to,
–
–
–
buildings,
transportation,
Information and Communications Technology.
and they are working on an Action Plan for five years to achieve accessibility on a
permanent basis.
Implementing these aspirations requires attention to:
–
–
–
attitudes,
knowledge and,
competence.
In order to achieve universally accessible public places these issues need to be covered
comprehensively in the training and accreditation of architects and planners and clearly
written into building codes and design protocols.
Barcelona was offered as a good example of Universal Design, it was noted that they have
34 000 pedestrian crossings which are level for wheelchair users all made to the same
standard. One visitor with a disability to Barcelona said “This is the first time I can
experience architecture”. Others also benefit from the large, level open spaces for example
skaters make common cause with wheelchair users!!!
The Swedish Government delegation raised a question about how far the principle of
Universal Design has in fact been integrated into the formal education and accreditation of
architects to date, noting that it might not be considered the most “flashy” subject. The
speaker acknowledged this as a difficulty in Norway as well on this score but he said that he
was optimistic that the younger generation of architects did see it as important and that
students and young architects were keen to pursue it even though established architects are
not so well informed.
Another comment from the floor was to contrast the cost of post hoc adaptations as opposed
to planned provisions for people with disabilities: it was observed that if you think in
advance then the extra costs for designing an accessible building are only 0.4% whereas if
you have to add adaptations afterwards it averages 15-25%.
Mr Igor Vykhodets, Deputy Head of Division of the Federal Sports agency Rossport,
Russian Federation
He spoke on sport, culture and other leisure activities as a strategy to promote the
integration of people with disabilities and he emphasised the enormous benefits of the
sports programme adopted in Russia geared towards participation in competition at local,
national and international levels culminating in the Paralympics. This programme has
existed alongside a fundamental change in attitudes and a commitment to a Sport for All
approach where the leisure and sports community tries to get all members of society
involved, for example by setting a target of 30% involvement including people with
disabilities. The inclusion of children and adults with disabilities in a wide range of sporting
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activities needs to be reflected in the design of sports facilities and the promotion of
campaigns to encourage people with disabilities to become involved.
The Paralympic movement has inspired the training of 200 specialised coaches and
specialised training facilities in the Federation and Russia now has many competitors
meeting international standards. The commitment varies regionally, and legislation might
provide a firm basis for sports clubs to support them in setting up this kind of facility and
adapting buildings: again it is much more costly to adapt existing facilities than to design
them for all at the initial stages.
Athletes with disabilities compete at national and international level supported by the
committee that specialises in disability within the Olympic movement in a wide range of
disciplines, including the winter games, winning many medals. In Norway a comment was
made about mass skiing events for disabled and non-disabled skiers. Running was also
mentioned as an activity that could be enjoyed as a non-competitive sport for all as well as a
competitive event for athletes who want to aspire towards excellence. Promoting sport for
children and adults with disabilities should be seen as a long term strategic mission and it
needs government backing and funding.
There was some discussion about the helpful tension between these two approaches but
there was agreement that even though the Olympic and Paralympic movements are not
mass movements, the coverage they receive encourages involvement and visibility. Also it
stimulates the cohesion of people with disabilities community as they come together in
common pursuit of their goals.
Ms Marianne Bie, Family therapist and Clinical Nurse Specialist; Baerum
Families need support from their communities, and this project supports the couple’s
relationships with each other and provides space for them to reflect, - “What about us?”. The
programme was developed initially between 2002-2004 in Norway, as a joint project of two
government departments; (the Ministry for children and equality and the Ministry for
Health) and is now considered and funded as a permanent programme run by social
services. It consists of couple workshops held over a weekend to help parents work things
out for themselves and practice communicating well, thereby preventing problems building
up, also helping professionals raise their awareness and develop sensitivity to these issues
and increase their skills to address them. The workshop is currently offered to couples
across Norway and is run in an informal and relaxed atmosphere using music and exercises,
including walks and time to talk through issues and to tell their stories with other parents to
act as supportive witnesses. The programme starts on a Friday evening after work and the
initial focus is on establishing a good atmosphere then they work on issues of
communication and co-operation, focusing on loss and grief, disappointment, forgiveness,
communication and problem solving. We should not silence parents in their efforts to work
through their grief about the “child of their dreams” as we support them in dealing with the
day to day challenges of bringing up the child they do have and of how their particular
coping/ grieving styles impact on their partner.
The aim of the workshop is to help the parents to sustain a dialogue about these themes. The
workshops also allow fathers to get support from other fathers and mothers to support each
other and both to think about the needs of their other children. Parents leave these
workshops feeling revitalised and ready to make changes in the way they relate to each
other as well as to their child(ren). The workshops have been systematically evaluated and
89
participants are very positive about their impact on their lives and ability to manage on a
day-to-day basis.
1 238 couples have attended workshops so far and 1 000 professionals have attended skills
strengthening sessions. One hundred professionals, including family therapists, have been
trained to run similar workshops, thereby also building awareness of the needs of people
with disabilities into mainstream family support services. Follow-up courses are also being
run so that couples can attend more than one weekend. A budget of 7.5m NKR was assigned
in 2006 (i.e. about 1m euro).
A member of the audience asked about whether single parents could make use of a similar
workshop to help them deal with their feelings too and explored what would be needed in
terms of respite care as well as adaptation of the couples programme. Another delegate
spoke about the need for parents of children with similar disabilities to be in contact with
other parents on an ongoing basis and not only through one workshop-weekend. User and
carer groups are central to the support networks of parents of children with disabilities who
have specific syndromes and conditions: the speaker assured the audience that the couples
programme does not cut across, or replace this need. The programme is also very cost
effective insofar as it maintains family ties and prevents long term placements in alternative
care settings or boarding schools. The programme was initiated by the Ministry of Health
and the Ministry of Children and Equality as part of a national action plan. But delegates did
say that it might be difficult to argue for this programme to be a priority alongside other,
more practical supports.
Also there was discussion about how the workshops impacted on the staff providing
everyday support and therapeutic input to the family. The need for co-ordination was
highlighted by a delegate who quoted a Russian saying which roughly translates as “Every
expert is trying to pull the blanket over to their own side of the bed” and which highlights
the need for co-ordination between all the professionals who contribute to supporting
families so that they are not working at cross-purposes to each other but instead can make
their combined efforts really count.
Summary
This workshop covered many issues but all were concerned with:
–
–
–
the inclusion of children and adults with disabilities in mainstream settings;
their access to public places and spaces and
their involvement in ordinary nurseries, schools, social and leisure activities,
including sport.
These are important goals that should be supported as part of the long term strategic
responsibility of governments, NGOs and civil society. Moreover people with disabilities
themselves as individuals and through their organisations, together with their families and
service providers, should have a real say as stakeholders in shaping the services that are
offered to them.
Inclusion breaks down barriers and promotes relationships between people with disabilities
and those who do not have a disability at this time: this in turn benefits their families and
informal carers, ensuring that their lives are also allowed to proceed like those of their peers
and helping them so that they can enjoy as well as care for their relative.
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The needs of children and adults with disabilities, and those of their families, should be
anticipated in “Universal Design” so that buildings and public spaces are made fully
accessible from their inception. Inclusion should be effected through “sector responsibility”
that is by mainstream government departments routinely planning for children with
disabilities as part of their regular programmes for all children and departments providing
services such as benefits or health care to the community at large making sure that these
departments include disabled adults in their strategic planning. Our discussion echoed
something said in the plenary which drew a parallel between Universal Design of buildings
and facilities and sector responsibility in policies and provision by saying that the latter was
really an example of Universal Design being applied to policies.
In our general discussion we agreed that countries that still use institutions for the
placement of children with disabilities will need to develop sophisticated programmes over
the long term for their gradual closure and the returning of those children to their own
families or communities, including to properly regulated foster families, or small family
type care where this is more appropriate and/or where their families of origin cannot
resume their care. No-one wants this transition to be badly planned or carried out in haste
but for there to be time to build up credible alternative facilities in the community and to
work within an agreed and properly funded strategy.
In Russia sport has played an important role and it was agreed that, in addition to their day
to day inclusion in the everyday life of their families, schools, neighbourhoods and social
networks, children and adults with disabilities should also be helped to participate in
activities that enhance their visibility and status, in their communities. These include activities
such as their involvement in the arts, music, culture, politics and sports including to
competitive level, noting especially the role of the Paralympic and Special Olympics
movements as an inspiration to athletes with disabilities.
Recommendation from the workshop
This workshop recommends that countries move gradually but purposefully towards
deinstitutionalisation, with an urgent focus on the needs of children, and that they take steps
to facilitate the inclusion of all children with disabilities and adults in mainstream service
provision and in valued roles within their communities through Universal Design and
participation in activities that enhance their visibility and status, such as their involvement in
the arts, music, culture and politics, and in sports at local and competitive level, noting the
role that the Paralympic and Special Olympic movements, among others, have played as an
inspiration to athletes with disabilities.
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WORKSHOP 2
EDUCATION, VOCATIONAL TRAINING AND EMPLOYMENT OF PEOPLE
WITH DISABILITIES
Chair: Dr Hartmut HAINES, Chair of the Council of Europe Committee on the
Rehabilitation and Integration of People with disabilities, (CD-P-RR), Ministerial
Adviser, Federal Ministry of Labour and Social Affairs, Germany
Ms Kari BRUSTAD,
Deputy Director General
Ministry of Education and Research
Oslo, Norway
Abstract
Education for all is the basic principle of Norwegian educational policy. All children,
regardless of social and cultural background, gender, geographical provenance and special
needs, have an equal right to education. The aim of the Norwegian Government is full
participation and equity. Due to that the society has to be made non-disabling – which is
quite a challenge!
In order to respond constructively to all kind of changes in the society, education must be
organised within a framework of lifelong learning.
“Educational equity refers to an educational and learning environment in which individuals
can consider options and make choices throughout their lives based on their abilities and
talents….. it opens economic and social opportunities regardless of gender, ethnicity, race or
social status” (Equity in Education, Country Analytical Report, Norway, NIFU 2006).
At a state level available tools to fulfil the obligations are laws, finances, administration,
research, documentation and user participation.
The PISA survey regarding Norway showed – among others:
• high level of resources allocated to education, but still large differences in learning
outcome
• large variation in reading skills between pupils
• the educational system does not reduce inequity as well as expected
• nearly all children enter upper secondary – not everyone learns what they should or
completes the cycle.
This August the new reform Knowledge Promotion has been introduced in compulsory
school as well as in upper secondary education and training in Norway. The reform implies
new subject curricula all over. The curricula include clear objectives specifying the level of
competence expected. Basic skills will be included in every subject curriculum in accordance
with the characteristics of each subject and the relevant levels.
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In the presentation I will give a brief overview on education in Norway when it comes to:
•
•
•
•
•
Kindergarten
Compulsory school
Upper secondary education and training
Higher education
Adult learning
and discuss some facts and challenges regarding pupils/students with reduced functional
ability within these levels of education.
There might be a tendency to point out problems of the individual child or student and not
search for system made barriers. We might say: “He has learning difficulties and will never
be able to read fluently.” What we should have said could be: “What is the content in the
teacher training colleges in the subject of literacy? Do we have ongoing research or do we
need to initiate research?” It is important to identify and remove society-made barriers.
•
•
•
4.5 million people. 56% aged 16 and older have accomplished upper secondary
education or training. 22% have some kind of higher education qualifications.
97% of young people enter into upper secondary education or training
For students with special needs, the percentage attending higher education has
increased enormously over the last 10 years.
Presentation
Every year new eager children will be starting school, in Norway and all over the world.
These children will leave their mark on most of the 21st century and be in active
employment until 2065. The quality of the school they meet will be crucial for their further
development.
Education for all is the basic principle of Norwegian educational policy. All children,
regardless of social and cultural background, gender, geographical provenance and special
needs, have an equal right to education.
In order to respond constructively to all kind of changes in the society, education must be
organised within a framework of lifelong learning. Less than 1% of the children in Norway
are in special schools. All children have the right to attend their local school.
History of inclusion in education
Until 1975: separate acts for ordinary schools and special schools. Special schools run by the
state. Then regulations concerning special education included in the general education act
for all children.
Then in 1992 former state run special schools were closed down. Some of them (16) were
transformed into state-run resource centres, a support system for municipalities and county
municipalities in order to support schools and children with special educational needs.
Children with special educational need had to be included into mainstream schools.
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The aim of the Norwegian Government is full participation and equity. Due to that the
society has to be made non-disabling – which is quite a challenge!
“Educational equity refers to an educational and learning environment in which individuals
can consider options and make choices throughout their lives based on their abilities and
talents….. it opens economic and social opportunities regardless of gender, ethnicity, race or
social status” (Equity in Education, Country Analytical Report, Norway, NIFU 2006).
All children should have access to both school, training establishment and a good learning
environment. The quality of the schools is crucial to the students’ further development. All
pupils are of equal worth – none of them are alike.
Tools at a state level:
•
•
•
•
•
•
Laws
Finances
Administration
Research and documentation
Advisory body
User participation
- National Parents’ Committee
- Council for inclusive education
- Higher education user forum
- Annual meetings with organisations
These initiatives are important in order to follow up the perspective that those affected by a
decision, or those who use services, may influence the decision-making procedures and the
organisation of services.
Facts and challenges - Kindergartens:
From the year 2006, the responsibility for kindergartens was transferred to the Ministry of
Education and Research. Within the end of 2007: full access and low prices. Children with
special needs will get additional support and priority of access. Children with special needs
for pedagogical support, may have the right to special needs education within the Education
Act – free of charge.
Challenges:
information from the kindergartens to the schools (transition)
preparation for school
teacher competence
Facts and challenges - Compulsory school:
10 years of schooling, free of charge. Responsibility: the municipalities.
Teaching adapted to the abilities and aptitudes of individual pupils and apprentices. Those
who do not benefit satisfactorily from ordinary tuition have the right to special education.
As far as possible, the special education that is provided shall be planned in consultation
with the pupil and the parents of the pupil. Considerable emphasis shall be placed in their
views.
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Before the municipality or county authority makes a decision concerning special education,
an expert assessment shall be made of the pupil’s specific needs. This assessment will
suggest whether the pupil needs special education, and what kind of tuition should be
provided.
A recent study shows a variety in organisational matters, among others that pupils with
special educational needs may have some of their tuition in separate groups and not in the
ordinary class where they belong. Some might be in the ordinary class no more than five
lessons a week. Furthermore, the study shows that the teacher is supplied with an assistant
when one or more students need additional support in the classroom, while a special needs’
teacher is preferred when a child is given individual teaching.
Since 1999 all municipalities have been legally obliged to provide day-care facilities before
and after school. This is for children attending the first four grades. Children with special
needs can be offered day-care facilities the first seven grades.
Challenges:
– when tuition is organised in small group or as individual teaching – for the child, the
teacher or the class? who benefits? ;
– day-care facilities: the 5th -7th grade children are few and may feel uncomfortable;
– highly educated teachers vs. assistants, concentration and learning is more complex in a
class;
– transition.
Facts and challenges - Upper secondary education and training:
Responsibility: county municipalities. Upper secondary education is from grade 11. Every
student between 16 and 19 years has a statutory right to at least three years upper secondary
education leading either to higher education or 4 years vocational training leading to a trade
or journeyman’s certificate. Those who opt for vocational training can acquire the necessary
qualifications for entrance to higher education by attending an additional 1 year course with
an additional amount of common subjects. Pupils entitled to special needs education are
entitled to up to two years additional upper secondary.
Pupils may be entitled to tuition in sign language or Braille.
A recent report shows that 97 % of the 1999-cohort entered upper secondary out of which
60% accomplished within the standardised period of time. After two more years, an
additional 11% had accomplished 24% dropped out for various reasons. When you have a
closer look at vocational training, 40% accomplished within the standardised period of time.
After 2 more years, an additional 15% had accomplished. 8% continued their education after
this, but 36% dropped out.
Challenges:
– some may not reach these goals – but achieve lower level qualifications;
– some are neither in upper secondary nor in employment;
– if an apprenticeship is not available, training will be provided at school.
Outcome?
– students entitled to tuition in sign language or Braille. Teacher qualifications?
– why not directly from vocational training to higher education
– drop-outs.
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For all – educational and psychological counselling and support systems.
Chapter 9a of the Education Act came into force in 2003. Due to this chapter all pupils in
primary, lower secondary and upper secondary schools are entitled to a good physical and
psycho-social environment that will promote health, well-being and learning.
Each municipality and county authority shall provide an educational and psychological
counselling service. This service shall ensure that expert assessments are prepared when this
is required by the Education Act. The service shall assist the schools in order to improve the
adaptation of tuition for pupils with special needs. For some this is not enough. The
Norwegian Ministry of Education and Research sees the role of the support system and the
resource centres as important in order to give every child it’s rights and needs. The children
are entitled to go to the local school and in accordance with the curriculum. You cannot
expect the school or the municipality to have all kinds of expertise available. They might
need additional support and guidance.
Challenges:
– adapted education for all
– avoid ex-gratia payment of compensation
The new reform in Norway: Knowledge promotion
– New subject curricula which include clear objectives specifying the level of competence
expected.
– Less detailed and basic skills given priority:
- the ability to express oneself orally
- the ability to read
- the ability to express oneself in writing
- the ability to do arithmetic
- the ability to use ICT
– Continuous subject curricula
– Up to 25 % of the periods in individual subjects can be used in other subjects
– Reform-related competence development
Facts and challenges - Higher education:
State run. Some private institutions.
Reports state that higher education institutions have had a lack of understanding which is
needed to give students with reduced functional abilities equal opportunities to study.
When a person with reduced functional ability is admitted to higher education, the
educational institution is given certain obligations to make adaptations. A series of
initiatives have been initiated in order to reduce barriers.
The higher education Act states that greater demands are placed on the individual
educational institution to establish systems that satisfactorily document the quality
assurance work and reveal defects in quality. This also applies to demands on the
educational institutions to improve the situation for students with a reduced functional
ability.
Each institution has been instructed to develop plans of action to improve access to all
students.
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The Norwegian University of Science and Technology (NTNU) has been given the
responsibility to inspire and give guidance to other institutions.
Each educational institution is to have a contact person or advisory service for students with
a reduced functional ability will be maintained.
All students admitted to courses with a scope of 60 study points or more have been given a
statutory right to an individual education plan. The requirement of an individual education
plan is intended to ensure a closer and more binding relationship between the institution
and the individual student. The plan must, among other things, show how the institution is
making arrangements so that the student can achieve a defined learning objective within a
standardised time. The institution and student are expected to co-operate in preparing the
education plan and the individual student is expected to be able to influence the content of
his/her own education plan. The individual education plan is a useful tool for adapting the
study situation of persons with a reduced functional ability.
One of the key motivations for studying lies in the possibility of obtaining work. Many
persons with a reduced functional ability experience difficulties in finding work once they
have completed their education. This is due to several factors. There is reason to believe that
these students have fewer opportunities than other students to obtain job experience
through summer jobs, etc., while they are studying. The lack of job experience and barriers
in working life is still challenging.
Challenges:
• access
• job possibilities
To conclude:
We must not point out problems of the individual child or student but search for systemmade barriers.
4.5 million people. 42% aged 16 and older have upper secondary education and training.
25% have higher education.
97 % of young people attend upper secondary education or training.
For students with special needs, the percentage attending higher education has increased
enormously the last 10 years.
In order to get adapted education for all, we need both interministerial co-operation and
cross-sectoral co-operation.
This is continuous work.
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The vocational rehabilitation of people with disabilities: issues and the impact on
labour resources
Mr L.V. SYTIN, Mr L.V. LYKHINA
Novokuznetsk Scientific and Practical Centre for Medico-Social Expert Appraisal and
Rehabilitation of People with Disabilities,
Russian Federal Agency for Health Care and Social Development (Roszdrav),
Novokuznetsk,
Russian Federation
At 1 June 2006, the population of Russia numbered 142.4 million, the seventh highest in the
world. Natural losses over the period 1989-2005 caused a fall by 7.9 million in Russia’s
population. Migration processes masked this problem to an extent, so the actual reduction in
the number of people living in Russia was 4.9 million.
Over the last 10 years, the population of the Russian Federation has shown an annual
decrease by between 700 000 and 900 000 people.
According to UN data, life expectancy in economically developed countries is 79.5 years
(76.6 years for men and 82.0 for women).
In Russia, the highest life expectancy was recorded in 1960 – 70.4 years both sexes combined
(66.1 for men and 73 for women).
In 2004, this figure reached its lowest level, at 64.8 years for the population as a whole
(58.2 for men and 72.1 for women). In terms of life expectancy, Russia lies in 134th place in
the world for men and 100th for women.
Depopulation in Russia is explained by a very low birth rate against a high death rate.
Specialists say that this is due to unfavourable socio-economic processes, psychological
tension and a chronic state of stress among the population. The birth rate in the Russian
Federation fell from 23.2 per 1000 head of population in 1960 to 10.0 in 2005.
The death rate in the Russian Federation is continually rising, and in 2005 it reached 16.8 per
1000 head of population, i.e almost 1.7 times the birth rate. In 26 of the Russian Federation’s
constituent entities, the number of deceased exceeded the number born by between 2.0 and
2.9 times.
In Russia, the number one cause of death is cardiovascular diseases (57.5%), but this figure is
almost double that in European countries. In second place for the Russian Federation, just
ahead of oncological diseases, is death by violence (12.6%). Road traffic injuries carry off
more than 12 000 Russians a year, intoxications, including alcohol intoxication, account for
16 800, and murders and suicides for 34 000 deaths each year. About 80% of those who die
prematurely are men of working age. These causes of death are classed as “preventable”,
and should be a source of particular concern to the State. Oncological diseases take third
place in the Russian Federation, at around 12.0%.
According to data provided by the Russian Federation’s National Statistical Service,
87.3 million people (60% of the entire population) are of working age. Of these, 64.9 million
(about 45%) work for the benefit of the country’s economy.
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Demographers talk of “the ageing of a country”, when the proportion of people aged over
65 exceeds 7% of the total population. Today more than 30 million people in Russia (or
21.5%) have reached pensionable age, which creates a significant extra economic burden on
those who are still of working age.
Russian Federation and WHO specialists have forecast that the country’s population will be
138 million by 2010, and 130 million by 2016.
Of course the demographic problems facing the country have not gone unnoticed. Russia’s
President Vladimir Putin emphasised in his address to the Federal Assembly in May 2006
that “the demographic situation has become the most acute problem facing Russia today”.
The Russian Federation Government has ratified a blueprint for the demographic
development of the country up to 2015. The main plank of this is to improve the quality of
life for people and increase the birth rate, although an enormous role in managing this
complex task is played by non-material factors (psychological, moral, religious, and the
striving of people to lead a healthy life).
So far the steps taken by the government to lead us out of the demographic crisis do not
inspire optimism, and the role of rehabilitation of people with disabilities in supplementing
the country’s workforce has gone entirely unmentioned.
The point should be made that so far Russia has not had any proper means of taking account
of people who face difficulties living their lives. There is no reliable information on the total
contingent of people with disabilities, their nosologic characteristics and other figures that
would make it possible to plan national policy on integration of these people into society in
a timely and well-organised way.
The Pension Fund’s Federal register is the only source of data on the number of people
receiving pensions and benefits. As of May 2005, 11.1 million adults with disabilities were
registered, plus about 600 000 children with disabilities (aged under 18).
Information on people recognised for the first time as having disabilities is more objective
and complete. Analysis of primary disability for 1994-2003 showed that between 1 and
1.1 million people become disabled each year. Of these, between 550 000 and 600 000 are
people of pensionable age. This has been fostered by the implementation, since 2004, of
Federal Law No. 122, whereby the numerous exemptions and reliefs enjoyed by pensioners
and people with disabilities were replaced by cash benefits. The proportion of people with
disabilities of pensionable age rose from 51% in 2003 to 65.8% in 2005.
It should be noted that the proportion of people of pensionable and working age recognised
as disabled for the first time differs in different regions of the Russian Federation. In the
Central and North-West Regions, the number of pensioners with disabilities constitutes
57.6-63.9% of the total, but in Siberia pensioners with disabilities account for 47.7%. People
of working age with disabilities constitute about 40-45%.
The main causes of disability in the Russian Federation are diseases of the blood circulation
system (39.0-47.9 per 1000 of the adult population); malignant tumours (11.0-11.5 per 1000 of
the adult population); injuries and intoxications (4.5-5.8 per 1000 of the adult population);
and diseases of the bones and muscles (4.2-5.8 per 1000 of the adult population).
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In comparison with other illnesses, the aftermath of injuries is the most promising area for
restorative measures and achievement of peak rehabilitation benefit. But despite wellorganised orthopaedic and traumatological support, the figures for rehabilitation of people
with disabilities are very disappointing. Full rehabilitation is recorded in 5-6% of cases, and
partial rehabilitation in 17-18%.
It is a fact that the government increases pensions paid to old-age pensioners and people
with disabilities each year. But this rise barely keeps pace with inflation, and fluctuates
somewhere around the breadline. Today (1.8.2006) the average disability pension is
2181 roubles (about 80 USD).
Federal Bureau for Medico-Social Expert Appraisal specialists have forecast that the total
contingent of adults with disabilities will be 13.2 million by 2010, and 15.3 million by 2015. If
we bear in mind that the total population of Russia by 2015 will be around 130 million, the
proportion of people with disabilities will be some 12% by then, and of those, 6-6.5 million
will be of an active working age.
The main component in rehabilitation of people with disabilities is vocational rehabilitation,
and the results of this activity serve as a good indicator of the quality and efficacy of
rehabilitation measures.
The importance of vocational rehabilitation is primarily governed by the fact that most
people with disabilities and members of their families need additional income. Besides this,
work is the key to shaping the social status of people with disabilities, making them into
equal members of society.
Eighteen years ago, in 1988, according to RSFSR Ministry of Social Security data, of the
3.9 million people with disabilities, 890 000 (or about 25% of the total) were engaged in some
form of work. At the end of the 1980s, 80% of people with group III disabilities, 19% of
people with group II disabilities and about 1% of people with group I disabilities were in
employment. At that time the country had over 400 specialist enterprises and 54 workshops
given over mainly to the employment of people with disabilities. The RSFSR Ministry of
Social Security system had 55 vocational training institutions at primary and secondary
levels, and 8 000 people were studying at them.
Today, only a few specialist enterprises still survive. There are still 42 specialist vocational
training institutions at primary and secondary levels, including 11 federal institutions,
where 7 200 pupils study.
The available educational institutions are concentrated in the European part of Russia. For
the whole of the vast territory that stretches from the Urals to the Far East there are just
3 such institutions, releasing about 300 rehabilitated people each year. It is a huge problem
for young people with disabilities poorly equipped for life to tear themselves away from
their homes and travel hundreds or even thousands of kilometres to a place of study.
There are a number of educational institutions where people with disabilities may obtain
higher vocational training: the State Social University, the N.E. Bauman State Technical
University, the State Pedagogical University, the State Specialist Institute for the Arts, the
State Institute for Studies of Arts Subjects, and others. It is a great shame that all of these
institutions are located in Moscow. The reforms that are taking place in Russia’s education
system will only make it more difficult for people with disabilities to be accepted and study,
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while the sphere of distance learning which is currently expanding is for the most part feepaying and relatively inaccessible to people with disabilities.
In 2003, only 45 regions out of the 89 constituent entities of the Federation (about 50%) had
introduced local legislation stipulating job quotas and decided on a procedure for gathering
and disbursing funds to upgrade vocational rehabilitation for people with disabilities,
including creating and equipping specialist workplaces. Experience gained in a number of
constituent entities has shown that where this problem has been properly addressed,
between 50 and 70% of people of working age with disabilities have been found jobs.
There are three basic Federal Laws that regulate the legal aspects of vocational rehabilitation
in Russia: the Russian Federation Law "On Employment" (No. 1032-1 of 19.4.1991); the Law
"On Social Protection for People with Disabilities in the Russian Federation" (No. 181 of
24.11.1995); and the Law "On Education" (No. 3266-1 of 10 July 1992), with supplements.
Under these Federal Laws, people with disabilities must be provided with guarantees of
work through special measures capable of improving their competitiveness in the labour
market: setting quotas for recruitment of people with disabilities in organisations regardless
of their form of ownership; setting aside jobs suitable for employment of such people;
provision of incentives to encourage businesses to create extra workplaces, including special
workplaces, for people with disabilities; organisation of training for people with disabilities
to learn new occupations etc.
It is a great pity that a number of the provisions of these Laws have so far not proceeded
beyond the declaration stage, as RF Federal Law No. 122, in the 22.8.2004 version,
introduced amendments to RF Acts and specified that a number of crucial points had ceased
to have effect; one particular casualty was provision 3.4 of Art. 21 of Federal Law No. 181
"On Social Protection for People with Disabilities in the Russian Federation", regarding the
powers of RF constituent entity authorities to establish a mechanism for the setting of quotas
in organisations where people with disabilities are given employment, and also the amount
to be paid by employers in the event that a set quota for recruitment of people with
disabilities is not met and the procedure by which such payment is to be made.
Since the legislative and regulatory base we have does not envisage sanctions for employers
who fail to meet their quota, and the incentives to encourage businesses have been
abandoned, in most Federation constituent entities the mechanism to organise employment
for people with disabilities that took so much effort to set up has been wrecked.
Employers have begun refusing to recruit unemployed people with disabilities; they have
ceased to provide information on vacancies that are suited for the employment of people
with disabilities. The upshot is that today only 10-14% of people of working age with
disabilities have a job.
Russia’s Constitution states that every citizen has a right to work, so the government should
construct its policy in such a way as to prevent discrimination towards people with
disabilities.
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To sum up, the following conclusions may be drawn:
1. There is a growing population shortfall in the Russian Federation, and a shrinking
workforce, which is hindering the creation of a stable financial and economic base for the
country.
2. Given the continuing increase in the number of people with disabilities, vocational
rehabilitation has so far failed to play a positive part in increasing the proportion of the
population in work.
3. Management at all levels and society as a whole fail to grasp the fact that outlay on
rehabilitation of people with disabilities is no mere waste of money and effort, since
millions of people with disabilities would, if put to work, not just provide themselves
with a decent quality of life but also make a substantial contribution to the country’s
economy.
4. Pursuing the fallacious policy of supporting people with disabilities by paying them an
unearned income may lead to social conflicts.
5. A potential solution to the numerous problems of disability in Russia may be found
through the drafting and implementation of a national programme on “Rehabilitation of
people with disabilities in the Russian Federation”, with a section “Vocational
rehabilitation of people with disabilities”.
6. Meanwhile new legal enactments regulating a reduction in unemployment among
people with disabilities need to be passed.
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Mr Nikolay AGARKOV,
Director of the Vocational Training Centre in Novokusnesk,
Oblast/Kemerowo,
Siberia, Russian Federation
Introduction
The UN constantly emphasises that people with disabilities have a right to an independent
life, including the same rights as every other person. In examining the problems of people
with disabilities in this report, the focus of attention is on children with disabilities who
need vocational rehabilitation and habilitation.
Habilitation and rehabilitation embody the idea that restrictions in the surrounding
environment create or cause manifestations of disorders.
Viewing disability as a set of environmentally-conditioned restrictions enables us to find
more realistic solutions for ensuring closer integration.
Vocational rehabilitation of people with disabilities includes:
1. vocational guidance;
2. training;
3. help in finding work.
Education is of particular importance to children, adolescents and adults with disabilities. On
the one hand it opens up the potential for them, as indeed for people without disabilities, to
achieve independent development of their personality, while on the other, their chances of
success in an occupation and in life greatly depend on the quality of their education.
The number one task for the education system is to achieve the maximum possible
development of the capacity to absorb knowledge and acquire new skills in each person with a
disability individually, bearing in mind the specific nature of their impairment, and where
necessary making use of auxiliary means to respond to a particular disability.
In addition, people with disabilities must learn to manage in an environment that is
completely unsuited to their dysfunction, and to acknowledge and accept it as it is. Besides
training as such, then, education must provide individual help that is of relevance to
practical life and oriented towards integration in the social environment, and this must
apply both to pre-school nurture and to training at school, occupational training college and
further education institution, and also to any further training.
To avoid creating a quite unnecessary protective atmosphere and isolation of people with
disabilities, the principle to be followed is one of providing the maximum essential
assistance coupled with the maximum possible joint study.
The need for study is something that accompanies people both with and without disabilities
throughout their lives. There is already considerable potential available for people with
disabilities to continue their education and acquire new skills.
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Vocational guidance
The progression from a school desk to a place at a vocational training institution traces the
path for further integration in the life of society and is consequently a particularly significant
move for a young person with a disability. The choice of occupation is something that needs
fundamental preparation beginning as early as possible.
Skilled vocational guidance is of crucial importance. At the Novokuznetsk State Residential
Arts and Technical College, we have considerable experience in organising vocational
guidance for people with disabilities. An occupation selection department has been in
operation since 1992. The department’s opening was the culmination of a joint project
entitled “Consultative assistance and facilitation in the creation of a modern vocational
rehabilitation system for young people with disabilities in the Russian Federation”, aimed at
transforming the social welfare system in central and eastern European countries, and
signed by representatives of the Governments of Russia and Germany. The German
Ministry chose Novokuznetsk in the Kemerovo oblast and the Novokuznetsk Residential
College (known as a residential training school in 1992) to implement this project, as the
oblast is a major industrial centre of Russia. The project participant on the German side was
the Volmarstein Evangelical Fund from North Rhine-Westphalia, which has a similar
infrastructure.
The programme to introduce German experience was carried out over a period of 3 years.
The European model for establishing occupational suitability among people with disabilities
was taken as a basis. Between 1992 and 1995 there was an exchange of delegations between
the Evangelical Fund from Volmarstein in Germany and the Novokuznetsk Residential
College to enable people to familiarise themselves with each other’s work and decide on the
principal areas for co-operation.
The experiment was a success, and the Novokuznetsk College, having adapted the
European model to Russian conditions, is still applying this system today. A person with a
disability has the potential to obtain skilled assistance from specialists in choosing an
occupation; these specialists establish the following:
• physical capabilities;
• level of knowledge;
• capacity for study;
• qualities important to an occupation;
• personality features.
and help in these ways:
• in putting together a career path;
• by giving recommendations concerning choice of occupation and place of study.
Someone undergoing rehabilitation has the opportunity to take tests each
month for a year. There is an examination period of 21 days.
Areas of testing:
• medical aspect;
• psychological examination;
• socio-pedagogical test;
• general tests: Russian language, mathematics, motor skills;
105
•
vocational tests in these areas:
– electrical engineering,
– metalworking,
– decorative and applied art,
– entrepreneurial skills and business.
The occupation selection department has offices with specialised equipment adapted for
people who have locomotor apparatus function impairment.
Link with the job centre
Under the law on assistance for work placement and vocational training, questions of
vocational guidance, training and finding work for citizens are the responsibility of the
Labour and Jobs Agency of the Federal Agency for Health Care and Social Development
(Roszdrav).
Vocational guidance departments for people with disabilities have been set up at all public
job centres.
The employment service for the city of Novokuznetsk and, going down the line, all such
services in the Kemerovo oblast, also provide guidance and financial management for the
functioning of the Novokuznetsk Residential College as well as the information it needs.
Since 1993 agreements have been concluded on an annual basis, under which people with
disabilities are sent for vocational testing to the occupation selection department from all
towns in the Kemerovo oblast. The costs of accommodating them at the occupation selection
department are paid by the job centre.
The job centre is also a customer who has a say in the content and sometimes in the methods
employed in the work of the college.
This structure was the key to expanding the scope of testing at the occupation selection
department. In 1992, occupational selection enabled college leavers to decide their own
suitability for 9 occupations; in 1995 this number had risen to 30, and in 1998 to 44. This
means that those undergoing the tests today can receive help from specialists in establishing
their suitability not just for the occupations opened up at the Novokuznetsk Residential
College, but also for further occupations that may be acquired at other training institutions
in the following fields:
– electrical engineering;
– metalworking;
– entrepreneurial skills and business;
– decorative and applied art.
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How the job centre and the Novokuznetsk Residential College work together
Job centre –
vocational guidance department
Novokuznetsk College –
selection department
Conclusion on
occupational suitability
Recommendations
Training at Novokuznetsk
College
Training via job centre
Finding a job –
job centre
Training
A person with a disability will only be able to compete with someone without disabilities if
they have acquired the best possible vocational skills. So the number one task, in conjunction
with political measures in the sphere of education and social security for the rehabilitation of
people with disabilities, is precisely to resolve labour market problems by giving people with
disabilities broad opportunities to receive vocational training, thus as far as possible ensuring
a level playing field for people with and without disabilities in the struggle to secure a steady
job.
The task of vocational training for people with disabilities is to enable them to acquire an
officially registered occupation (speciality), in line with the law on education.
Work on occupational rehabilitation at the Novokuznetsk College is built around the
following principles:
1. The main aim of an educational institution is to facilitate the fullest possible integration
of people with disabilities person into society as a competitive specialist.
2. In order for the specialist to be in demand, their skills requirements must be specified by
the employer (work beneficiary).
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3. Modern production processes demand not only practical skills at the level of the person
doing the work, acquired through production training practice, but also, and to a greater
extent, knowledge, which enables the necessary ability to be developed.
4. The speciality must be in demand on the labour market, and mobile. A training course
graduate should not have to re-train to a new speciality during their working life; they
should have to do no more than extend the scope of skills acquired.
Training is currently given at the College in four specialist areas for secondary vocational
training and in six occupations for primary vocational training.
The past 10 years have seen major changes at the College: its status as an educational
institution has changed (the residential training school has become a college), and the list of
occupations has also changed. The new features have come about with the assistance of the
State Employment Service and German colleagues from the Volmarstein Centre. Cooperation on an international project under the umbrella of the “Vostok” [East] programme
in the area of rehabilitation of people with disabilities has played a crucial part in
determining the path taken by the College’s work and in the selection of new specialist
areas.
There has been co-operation with the Volmarstein occupational training school in three
specialist areas:
–
–
–
Commercial service specialist 1993-1997
Instrument service engineer, and
Information systems technician – 1997-2001.
In view of the fact that educational standards entered into force in Russia from 1996, the
specialist areas were selected by analogy with the aforementioned list, namely:
–
–
–
Commercial representative;
Instrument fitter;
Radio repair technician.
In selecting new specialist areas for secondary vocational training, account was taken of the
labour market demand now and in the future, and preservation of experience acquired
through a co-operation programme.
The following specialist areas were selected:
-
Management;
Automated processing and control systems;
Engineering processes;
Advertising.
Work within a project framework has made it possible to underpin the occupations listed with
a good industrial base, which enables theoretical knowledge to be combined with practical
training.
Practical work to acquire primary vocational skills is carried out at the College in specially
equipped workshops. The industry practice base for the speciality of management, for
example, is in the form of virtual study companies. The study company is a model of a
commercial enterprise with an internal structural division into departments. The departments
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that exist at the study company correspond to the departments in a real business. This means
sales, purchasing, personnel, accounts and warehousing. Students play the role of employees,
and from day one the person in charge establishes a schedule for movement between
departments, which the students follow over a period of two years in order to put in time in
all the structural sub-divisions of the study company.
Alongside the secondary vocational training specialist areas, the College also retains bluecollar occupations: tailor, artist (painting on wood), maker of crafted wood items, maintenance
fitter (domestic appliances and instruments), maintenance fitter (sewing machinery) and clock
repairer. This makes it possible to train people with disabilities with a variety of limitations.
Social rehabilitation
The gulf between the personal characteristics of a person with a disability and the
occupational demands made of them render the problems of entering into occupational life
wide-ranging and complex. This is why the College devotes particular attention to social
rehabilitation and integration of people with disabilities into society. The social teaching staff
includes teachers of social skills, psychologists, educationalists and supplementary education
teachers. The employees have set up a social rehabilitation programme for which various
educative forms and methods are deployed.
The programme’s specific elements are governed by the features of temporary residence at the
College – there is an adaptation period, followed by stabilisation and preparation for
graduation – and by the degree of dis-adaptation of the rehabilitation subject.
Help in finding employment
Each year, 90-110 specialists graduate from the College with diplomas. Of these, 67% find jobs
and 15% work at home.
When speaking of the assistance given in job-seeking, the point must be made that the specific
nature of our educational institution means that we are unable to follow a programme that
might be called “specialists to order”, but we do try to do something of this kind by organising
practical sessions on production processes and skill acquisition courses that take place at
businesses in the city.
Analysing the problems that occur during training and job-seeking, the most important we
have identified are these:
1. National standards in training, for both primary and secondary vocational training, are
aimed at the statistical average pupil and do not envisage a mixed approach or
rehabilitation or habilitation actions, while experience has shown that the process of
turning people with physical disabilities into occupationally-trained workers differs
significantly from the training process for people without disabilities.
2. Workplaces are generally not adapted for people with disabilities, and progress with
obstacle-free environments has been mediocre. These factors combine to lower the chances
of people with disabilities being able to compete with a specialist without any disability
when seeking work.
3. The Novokuznetsk State Residential Arts and Technical College is an establishment of
federal significance, and we receive applications from school-leavers all over the Russian
Federation. However, it must not be forgotten that people with disabilities are the category
of citizens with the least social protection. Mechanisms have to be considered for
reimbursing the sometimes substantial expenditure incurred by travel.
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4. Existing training plans leave out the category of "adults with disabilities" (acquired
disability) for example, making the issue of introducing integrated, multi-phased training
plans particularly acute.
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Employment of disabled people at Ford of Europe – role model for European
industries
Dr Erich KNUELLE,
Senior Medical Officer
Department Manager
Job Planning and Rehabilitation
Ford of Germany
Abstract
What can be the interest of an employer to employ people with disabilities or to maintain
them in employment?
Ford of Germany
In 2001 Ford of Germany implemented new processes to integrate employees with
disabilities. The story of success owns some important milestones.
CY 2001-2003: FILM-Project – integration of 300 disabled employees into normal
production
The FILM-Project-Story and the continuously applied Disability Management Process
demonstrate that there is a WIN-WIN-Situation for both – the company and its employees.
The economic benefit is obvious:
Each employee on value adding job
Improved work performance
Reduction of absenteeism
Also the individual profit:
Maintained employability
Job satisfaction
The definition of ‘What is disability?’ is fundamental to understand the Ford approach. In
our understanding someone is disabled who is not able to do the job he/she is hired for
because of medical reasons. All is done to prevent the development of impairment and to
avoid dismissal. There is a sophisticated health management system which includes
ergonomic methods. Individual assessments of job requirements and employee abilities
allow us to find the right job for the right person by a profile matching system.
There are two other important milestones.
CY 2003: First CDMP in Europe (Certified Disability Management Professional
according to international standards)
CY 2006: First CBDMA in Europe (Consensus Based Disability Management Audit
passed according to international standards)
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Ford of Europe
Ford Motor Company has got a leading role in Disability Management in the European
industry.
Currently there are different local approaches to dealing with people with disabilities in
Belgium, France, Germany, Russia, Spain and the United Kingdom but there is an Executive
Board driven and common understanding to implement a European Disability Management
Standard.
Possibilities of pan-European synergies are under investigation to develop a suitable
European disability management standard based on the German Disability Management
Process.
Ford has taken over an active role in the social security system and is not only driven by
legislation but supported. On behalf of the employment of people with disabilities we look
forward to seeing more co-operation of a similar type between private and public
responsibilities.
Congratulations to the Council of Europe for establishing an Action Plan that is providing
the framework for such co-operation in all European countries.
Presentation
Ford in Europe is a good example which reflects the situations of people with disabilities
and their employment. If you look at the different nationalities employed at the Ford site in
Cologne Germany and their official status "disabled" you will detect an international
scenario:
Disabled Ford Employees in Cologne
Nationalities
Australia
Austria
Belgium
Switzerland
Germany
France
Greece
Italy
Poland
Portugal
Tunisia
Turkey
Africa
Yugoslavia
Total
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1 employee
2 employees
2 employees
1 employee
524 employees
1 employee
4 employees
25 employees
2 employees
2 employees
2 employees
107 employees
1 employee
1 employee
686 employees
It is remarkable that these employees are defined as disabled in Germany, but what would
be the situation in their mother country? There are different definitions in Europe! Important
for the employment is not the official definition but the impact of any impairment on work
capacity which can be a physical or mental alteration. And that is the definition which is
applied within Ford Motor Company.
These alterations were formerly described by medical restrictions for work placement.
About 10 % of the employees were counted in this group before a change of mind and
paradigm shift took place in 2001.
Answers had to be found to the growing challenges of the 21st century:
•
•
•
•
•
•
Demographic changes
Ageing workforce
Longer work life
Less work for non qualified people
Globalisation (transfer of work)
Growing number of mental diseases
The internal reasons to change had economic roots. With the introduction of the new Ford
Fiesta (CY 2002) pre-assembly places and "easy jobs" were reduced due to new product
design, restructuring of assembly lines, closure of an old handicapped workshop and
implementation of an external supplier park. A third shift was implemented. As a
consequence approximately 500 older or disabled people had to be brought back into
production and new instruments for integration were required.
A newly formed Disability Management Team developed effective organisational structures
and new communication processes to increase transparency and efficiency of reintegration.
Internal and external networking to offer early back to work opportunities was
fundamental. A standardised instrument for profile comparison (matching) of assessed
abilities and work requirements (IMBA) was installed. This efficient, integral and
sustainable concept has the aim to avoid disability by an early prevention system and to
integrate people with disabilities instead of their separation. There is no exclusion or
discrimination of people with disabilities.
The success of the first two years of Disability Management convinced the directors of the
board that the right tool was in place and the decision for further investment and
development was easy.
More than 300 employees from the original group of about 500 were integrated into normal
production jobs. This corresponds to a cost avoidance of $ 9.44 millions for hiring in the new
production area. Absenteeism was changed to presenteeism. There was a significant
reduction of medical leaves in this group of employees.
Due to the excellent project results the process became daily business. Until today about
3 000 profiles of workplace requirements have been assessed and about 1 100 profiles of
abilities have been prepared. Re-entries into separated workplaces for employees with
disabilities did not happen.
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What are the reasons for this success story? What makes the difference to traditional
approaches? What are the jump-starters and key-elements?
It's a typical "win-win-situation", both employees and employer profit of a common process.
The support of the Disability Management Team is holistic and sustainable. Integration
teams in all affected company areas are cross-functional and include representatives of
medical services, human resources, works council and the responsible management. These
teams ensure also consideration of all non-medical aspects. The process is company culture –
supported by executive board, works council and employees and the people involved
demonstrate passion and engagement.
The external networking to:
•
•
•
•
•
•
Social pension funds
Company health insurance funds and its medical services
Workers compensation board
Integration office
Labour office
Rehabilitation clinics
leads to individual solutions that are non-bureaucratic, contemporary and realistic.
Because the Disability Management teams are looking at abilities and not at disabilities
affected employees gain more self-respect, self-confidence and activate unused resources.
Individual solutions consider the social, private and working environment. Help is provided
where help is needed. Disabled and restricted employees are integrated into available teams
without barriers. Acceptance for not affected employees is created because the approach is
transparent and traceable. They understand that the primary objective is to maintain the
employability of an ageing workforce.
The scenario of a win-win-situation is not complete if the benefit of the company is not
described.
Employees who are satisfied are productive and profitable, they have a reduced absenteeism
rate. The expertise of skilful employees remains in the company and a trustful working
atmosphere is established.
It is important to mention that this approach is a strategy to face the challenge of
demographic changes and that the company takes over social responsibility.
There is a third winner who has big interest in maintaining people in employment – the
community. Employees continue to be contributors and will not be early benefit recipients of
social pension funds. They continue to pay taxes. Reduced absenteeism and contemporary
integration reduce cost for social pension funds and health insurances.
-
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To standardise the disability management process a manual has been developed by the
disability management core team. This manual is the base of the integration work and
defines internal responsibilities, shows interfaces to external institutions, describes
processes (single point lessons, flow charts), etc. It has been agreed by the director of
human resources, the works council chairs and the representative bodies for employees
with disabilities. This guarantees that all interested people have the opportunity to treat
employees with disabilities with known and accepted rules. It was the base to pass an
audit of this process.
On 8 June 2006 Ford of Germany became the first company in Europe to successfully achieve
the International Disability Management Standards Council's IDMSC Certified award. It
was the result of the Consensus Based Disability Management Audit (CBDMA) which has
been developed in Canada by the National Institute of Disability Management and Research
(NIDMAR)
(For details visit www.nidmar.ca, www.idmsc.org, www.hvbg.de, www.iqpr.de,
www.disability-manager.de).
About 100 years ago Henry Ford started to build cars for people with the production launch
of the T-Model.
Today - with the new Disability Management ‚ Model - we celebrate his tradition and
memory and demonstrate how to build cars with people for people.
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Employment of people with disabilities in the Russian Federation - current practices
Mr Pavel PANKRATOV,
Head of the Federal Agency on Employment
Russian Federation
According to the Federal Service of State Statistics, there were 12.1 million people with
disabilities in Russia as at 1 January 2005. Despite efforts by the state and society on the
prevention front, the incidence of disability is steadily rising. In 2004 alone, the number of
people with disabilities in the Russian Federation increased by more than 1.1 million. Of the
disabled population as a whole, roughly 13% are registered as having Group I disabilities,
62% - Group II and 25% - Group III.
If we consider people with primary disabilities by age group, over the period 2003-2005,
roughly 22.5% were young people (aged 18- 44 in the case of women, 18-49 in the case of
men), around 22.5% were middle-aged (aged 45-54 in the case of women, aged 50-59 in the
case of men) and around 59.9% were people of pensionable age (aged 55 or over in the case
of women, and 60 or over in the case of men).
Safeguards for people with disabilities in the field of labour relations
The employment of specific categories of workers is dealt with in a separate section of the
Russian Federation Labour Code, in particular with regard to women, people with family
responsibilities and workers under the age of 18. The employment of people with disabilities
is likewise covered by special provisions.
The conditions of employment, including pay, working hours and rest time, the length of
annual and other leave, as specified in a collective or individual contract of employment,
must not place people with disabilities in an unfavourable position or restrict their rights in
relation to other workers.
People with Group I and Group II disabilities have a shorter working week (35 hours) with
full pay (under Article 92 of the Russian Federation Labour Code). Overtime, work on days
off and night work are permitted only if the individuals concerned have given their consent
and provided that such work is not prohibited on medical grounds (Articles 96, 99 and 113
of the Labour Code). Under Article 115, workers are entitled to 28 days’ annual basic paid
leave. Additional annual basic paid leave (extended basic leave) is granted to workers in
accordance with the said Code and other federal laws.
In particular, under Article 23 of Federal Law No. 181-FZ of 24 November 1995 “On the
social protection of persons with disabilities in the Russian Federation”, people with
disabilities are entitled to annual leave of at least 30 calendar days. By law, therefore, people
with disabilities enjoy extended leave. If they make a written request, moreover, their
employer is bound to grant them leave without pay for up to 60 calendar days per year
(Article 128 of the Labour Code).
Under Article 94, paragraph 4, of the Russian Federation Labour code (as amended by
Federal Law No. 90-FZ of 30 June 2006) the number of hours to be worked per day (shift) by
people with disabilities is determined in accordance with a medical report, issued in the
116
manner prescribed by federal laws and other regulatory legal instruments of the Russian
Federation.
Article 224 of the RF Labour Code requires employers to create working conditions for
people with disabilities according to the individual rehabilitation programme.
How the law deals with matters relating to the promotion of employment of people with
disabilities
Under the Russian Federation Constitution, matters relating to the social protection of the
population come under the joint jurisdiction of the Russian Federation and constituent
entities of the Russian Federation. In matters which come under joint jurisdiction, federal
laws are issued, together with any laws and other regulatory legal instruments of
constituent entities of the Russian Federation which may be adopted in accordance with
those federal laws. Thus, under Article 5 of Federal Law No. 181-FZ of 24 November 1995
“On the social protection of persons with disabilities in the Russian Federation”, the state
authorities of Russian Federation constituent entities have the power to implement state
policy with regard to people with disabilities within the territory of the subject concerned.
Under Article 20, people with disabilities are provided with employment guarantees by the
federal state authorities and the state authorities of Russian Federation constituent entities
through the introduction of special measures designed to help them compete in the job
market:
-
the establishment in organisations, irrespective of their organisational and legal status
and form of ownership, of a quota for hiring people with disabilities and of a minimum
number of special posts for people with disabilities;
-
earmarking of posts in occupations which are particularly suited to people with
disabilities;
-
use of incentives to encourage enterprises, institutions and organisations to create
additional jobs (including special posts) for people with disabilities;
-
creation for people with disabilities of working conditions according to individual
rehabilitation programmes;
-
creation of conditions to enable people with disabilities to engage in business activities;
-
provision of training in new occupations for people with disabilities.
Under Article 21 of the said federal law, organisations with more than 100 staff are subject to
quotas for hiring people with disabilities. These quotas, which are determined by the
legislation of the relevant Russian Federation constituent entity, must be between 2% and
4% of the average number of workers employed by the organisation.
Disability organisations and organisations set up by people with disabilities, including
economic partnerships and companies whose authorised capital consists of a contribution
from a disability organisation, are exempt from the quota requirement. Up until 2005, the
quota for hiring people with disabilities applied to organisations with more than 30 workers.
Where employers failed or were unable to meet the quota, they were required to pay a
117
monthly fine to the relevant Russian Federation constituent entity. The amount of, and the
procedure for paying, the fine were determined by the state authorities of the relevant
subject of the Russian Federation.
Since the federal law did not stipulate any other requirements, state authorities are free to
determine for themselves the procedure for setting the quota in organisations and how it is
to be introduced.
From the date of entry into force of a regulatory legal instrument adopted by the state
authorities of a Russian Federation constituent entity concerning quotas for hiring people
with disabilities, the employer sets about creating additional posts or setting existing posts
off against the quota, taking into account the number of people with disabilities already
taken on.
People with disabilities are hired by employers acting on their own initiative, or on referral
by the employment service, with due regard for any recommendations made by public
welfare agencies, education authorities and/or disability organisations.
Under Article 25 of the Russian Federation law “On employment of the population in the
Russian Federation” employers are required to facilitate the implementation of state policy
to promote employment by observing the established quota for hiring people with
disabilities and are bound to inform the employment service every month of how many
vacancies they have and whether the quota for hiring people with disabilities has been met.
We should point out here that in order to fulfil the statutory quota, it is not enough for
employers simply to create the necessary number of special posts and notify the
employment service accordingly. In our view, employers can only be said to have met their
quotas if they have actually signed contracts of employment with people with disabilities
and filled all the posts specially created for them.
Despite all this, people with disabilities face a number of difficulties in their quest for
employment, starting with training. One major obstacle to receiving a proper education is
the lack of opportunities in educational establishments for integrating people with
disabilities into mainstream learning environments. Most educational establishments do not
take people with disabilities because the existing curricula and/or facilities are not suitable
for them. As a result, only 50% of people with disabilities receive vocational training at
present.
Having the necessary training is no guarantee that the person will then find a job, however.
The shortage of occupational rehabilitation institutions and the fact that these are often
located far away from where people live mean that they are unable to take advantage of
occupational rehabilitation and employment schemes, and so do not receive the necessary
information about opportunities for utilising their abilities, skills and knowledge.
The ability of people with disabilities to find jobs in distant locations is severely restricted by
the fact that they have limited access to transport facilities and, first and foremost, by the
lack of equipment that would enable them to use public transport. Under the federal law on
the social protection of persons with disabilities in the Russian Federation, people with
disabilities are provided with employment guarantees by federal state authorities and the
state authorities of Russian Federation constituent entities through the introduction of
special measures to help them compete in the job market.
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Under Russian Federation employment laws, the federal state employment agencies use
federal funds to carry out a range of measures to facilitate the employment of people with
disabilities. These include:
-
finding suitable work taking into account the person’s individual rehabilitation
programme, including placing them in “quota posts”;
arranging temporary employment;
holding special job fairs;
helping people with disabilities to become self-employed;
social adaptation in the job market, vocational training;
providing career guidance services and counselling, etc.
In 2005, 214 100 people with disabilities applied to the employment service, which managed
to place 81 500 of them in jobs.
In the first half of 2006, 121 800 people with disabilities sought help in finding work (71.4%
of the number recorded over the same period in 2005) and of these, the employment service
managed to place 42 600 (103.4% of the number recorded over the same period in 2005).
To sustain the motivation to work among unemployed people, the employment service
organises a number of special initiatives. These include community work, temporary jobs for
unemployed people who are having difficulty finding work, vocational training, job fairs,
etc.
In arranging temporary employment for people with disabilities, the aim is to encourage
wider use of flexible forms of employment and to provide targeted income support for
unemployed persons during the time that they are participating in the scheme. Involving
people with disabilities in community projects and temporary work helps to ease tension on
the job market and to maintain the motivation to work among unemployed people. It also
provides them with temporary employment and financial support while they are actively
seeking more permanent work. During the time that they are involved in the scheme, the
individuals concerned receive financial assistance of around 2 000 roubles per month,
funded from the federal budget. This is in addition to the wages paid by the employer.
In 2005, the employment service helped to place over 17 000 unemployed people with
disabilities in temporary jobs, and helped a further 1 000 to become self-employed.
Career guidance and vocational training for people with disabilities. Every year, over 7 600
people with disabilities (2.8% of the total number of people who receive vocational training)
are referred by the employment service for vocational training, which undoubtedly makes it
easier for them to compete in the job market.
In the first half of 2006, the employment service referred 4 100 unemployed people with
disabilities for vocational training, including 2 400 (i.e. 59.4%) for training in manual trades,
which is more or less in line with the needs of the labour market (75-80% of vacancies
advertised in job centres). Of these, 39% received vocational training, 49% underwent
retraining and learnt a second, allied trade and 12% received further training.
Of the total number of unemployed people, 33% received training in new specialist fields
and 67% upgraded their existing skills.
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Vocational training is provided in over 100 occupations and specialist fields. They include:
lift operators, boiler operators, jewellers, IT staff, groundsmen/gardeners, technicians for
servicing and repairing radio equipment, sales clerks, stitchers, sales & marketing
executives, advertising executives, nurses, clerical staff, etc.
On average in Russia, around 85% of people who complete vocational training schemes find
work. Of these, roughly 60% are hired within 3 months or thereabouts.
In 2006, the employment service directed its efforts at supporting and expanding vocational
training for the unemployed at training sites in enterprises and in manual occupations, at
developing flexible forms of study (distance learning, modular, off-site, etc.) and at
improving the balance between supply and demand in the labour market. In the first half of
2006, 98,000 people with disabilities received career guidance and/or counselling.
2006 has seen further efforts to develop the use of mobile centres which operate in
33 territories. These centres can improve the quality and accessibility of information and
career guidance services for disabled schoolchildren and adults living in rural or other
remote areas.
Federal budget spending on career guidance for people with disabilities over the period
January to June 2006 amounted to 2.2 million roubles, on vocational training – 20.5 million
roubles and on grants for individuals referred for vocational training by the employment
service – 8.9 million. In total, federal budget spending on career guidance and vocational
training for people with disabilities in the first half of 2006 came to 31.6 million roubles.
Federal budget spending on this area of the employment service’s activity is projected to
reach at least 65 million roubles in 2006.
One of the main mechanisms for getting people with disabilities into work is the
quota system.
The number of people with disabilities placed in quota posts in 2005 fell by 24% in
comparison with 2004, from 68 400 to 55 100. In the first half of 2006, the figure was
6 300.
The raising of the threshold beyond which organisations become subject to the quota
system, from 30 to 100 workers, means that virtually all “small” businesses are now exempt
from this requirement.
With the scrapping of the rule whereby employers were required to pay a fine to the
relevant Russian Federation subject if they failed to meet the quota for hiring people with
disabilities, the amount of funds available for creating special posts and specialised
enterprises (workshops, allotments, etc.) for people with disabilities has been severely
reduced.
There is a need to improve the machinery for helping people with disabilities into
employment, to develop qualitatively new approaches aimed first and foremost at
incentivising employers to hire people with disabilities (partial offsetting of the cost of
creating new posts for people with disabilities, and of wage and training costs, etc.).
120
The process of finding employment is facilitated by the work of the occupational
rehabilitation centres that have been set up in a number of regions across Russia.
In the Voronezh region, for example, a flagship centre for the occupational and sociomedical rehabilitation of people with disabilities has been operating successfully for more
than 10 years now. Over 2 000 people use the Centre’s services every year, benefiting from a
package of measures:
occupational rehabilitation (career guidance, counselling,
occupational integration), social rehabilitation and medical assistance, including some
therapy.
The current efforts are not enough, however, to achieve a satisfactory employment rate for
people with disabilities. At present in the Russian Federation, fewer than 10% of people with
disabilities who are capable of working are actually in employment. The great majority,
therefore, are deprived of the opportunity to supplement their income and find it very
difficult to become socially integrated.
One of the main obstacles to improving the effectiveness of measures to promote the
employment of people with disabilities remains employers’ reluctance to give them
permanent jobs because of the extra costs involved in creating special working conditions.
The federal employment service is worried about the employment situation of people with
disabilities, as one of the most vulnerable sections of society. Efforts are currently under
way, therefore, to devise ways of improving the machinery for helping people with
disabilities into work.
The main focus here is on measures to encourage employers to hire people with disabilities,
in particular the introduction of compensation to offset some of the costs associated with
employing people with disabilities, funding for schemes to create special posts for people
with disabilities, improvements in the way state-run employment agencies work with
people with disabilities and with federal socio-medical expert appraisal institutions with the
aim of providing more targeted assistance for people with disabilities and creating more job
opportunities for them.
From 2006 (the preparatory stage took place in 2005), in an effort to enhance the system of
occupational rehabilitation and employment of people with disabilities in three regions of
the Russian Federation (Republic of Karelia, Voronezh and Vologda regions), the
employment service has been implementing a Russo-Swedish project entitled “Occupational
rehabilitation and employment of people with disabilities”.
Under this project, it is planned to look at existing practice with regard to occupational
rehabilitation and the employment of people with disabilities at federal and regional levels,
to study current federal legislation in this area, to assess the effectiveness of the occupational
rehabilitation system and to develop proposals for improving it.
During the preparatory stage of the Russo-Swedish project, the following steps were taken
in the pilot regions:
-
the Swedish partners prepared and submitted a gender analysis of the situation of
people with disabilities;
experts from Sweden met with representatives of the executive and legislative
authorities of Russian Federation constituent entities, the heads of local and regional
121
-
-
-
agencies responsible for employment, labour and social development, and with senior
officials from the job centres;
Swedish experts looked at the work done by people with disabilities at specialised
enterprises run by disability organisations (e.g. in the Vologda region: “Ekran” - a
production association run by the All-Russian Society for the Blind, “Nadezhda” - an
arts and crafts business, a social rehabilitation enterprise and Moseikovskiy PsychoNeurological Home for the occupational rehabilitation of men and women with
disabilities in Vologda;
steering groups were set up, consisting of representatives from the employment, public
welfare and labour agencies, heads of institutions specialising in the rehabilitation of
people with disabilities, directors of state institutions (job centres);
seminars entitled “Occupational rehabilitation and the employment of people with
disabilities in the Russian Federation” were held with the participation of experts from
Sweden, specialists from the employment, labour, social development and education
authorities, job centres in a number of towns and districts across the region and
representatives of disability organisations. Participants compared notes on their work in
the social, occupational and medical rehabilitation of people with disabilities and the
Swedes made recommendations for developing further co-operation in these areas. It
was observed that there was a lack of co-ordination in the use of resources deployed in
the medical sphere for social and occupational rehabilitation;
issues relating to the setting-up of rehabilitation centres in Karelia and Vologda were
discussed and a list of the necessary equipment drawn up.
The implementation of this project has helped to boost efforts to promote the employment of
In the Voronezh region, for example, the number of applications received by the employment
service from people with disabilities was 1.3 times higher in 2005 than in 2004, with people
with disabilities making up 7.2% of the total number of unemployed. The number of people
with disabilities who received career guidance services rose to 3 600 while the number
referred for vocational training was 1.3 times higher than the previous year. The number of
people with disabilities who managed to find employment increased by over 100 to reach
1 800.
The number of people with disabilities benefiting from the services offered by state-run
employment agencies increased in the other pilot regions as well in 2005. In the Republic of
Karelia, for example, the number of people with disabilities who managed to find jobs was
11.8% higher than in 2004, while the number who benefited from career guidance services
increased by 18.6% and the number who took part in social integration schemes (“JobSeekers’ Club” and “New Start”) almost doubled.
Executive and legislative authorities in the pilot regions have expressed an interest in
implementing the said project.
In 2006, under an agreement between the Federal Labour and Employment Service and
Sweden’s National Labour Market Board concerning the implementation of the project
“Occupational rehabilitation and employment of people with disabilities” the following
measures have been taken.
Specialists from Russia’s Federal Labour and Employment Service, local and regional
employment agencies, public welfare agencies and state socio-medical expert appraisal
122
institutions and other interested organisations in the three pilot regions (Republic of Karelia,
Vologda and Voronezh regions) and the Voronezh regional Duma have studied working
methods and practices in the field of the occupational rehabilitation and employment of
people with disabilities in the three Swedish pilot regions.
1. The main method of inquiry consisted of holding meetings and conducting interviews
with representatives of institutions dealing with issues relating to the employment of people
with disabilities or working directly with such people, as well as discussions at roundtables
and seminars.
Involving people with disabilities in professional and community life is an integral part of
Sweden’s national policy.
Sweden does not have any specific legislation defining the status of people with disabilities
and entitling them to particular forms of social support. Under the Swedish Constitution,
however, they have the right to work on an equal basis with other citizens.
There is a highly developed system of support for people with disabilities (extensive ramps
and parking areas, adapted workplaces, etc.), which helps to create a more level playing field,
and society at large has a positive attitude towards people with disabilities, treating them like
anyone else.
Sweden’s employment service is very much geared towards getting people with disabilities
into or back to work, including those who have little residual capacity for work, through a
variety of methods (posting information on the Service’s official website, where companies can
advertise job vacancies and unemployed persons can post their CVs, direct work with
individual job-seekers (personal contact), telephone helpline).
The Swedish Government spends considerable sums on employment policy, with 42% going
on unemployment benefits, 50% on job market schemes and 8% on administrative costs.
In an effort to increase the employment rate and reduce unemployment, and to integrate
people with disabilities into society, annual provision is made in the state, regional and local
budgets for the occupational rehabilitation and employment of this particular group.
Apart from the state employment service, special institutions have been set up to deal with
matters relating to the employment of people with disabilities.
2. The results of the study visit were presented at a seminar in Stockholm, which was
attended by officials from Sweden’s National Labour Market Board (Mr Bo Bylund (Director
General), Mr Ragnar Gussing and Ms Olga Koulaeva), the Ministry of Industry,
Employment and Communications (Ms Mona Stål), branches of the Swedish Employment
Service in the Swedish pilot regions (Umeå, Karlstad and Vasteras), employment and public
welfare agencies and state socio-medical expert appraisal institutions and other
organisations in the Russian pilot regions (Republic of Karelia, Vologda and Voronezh
regions) and Voronezh regional Duma, as well as from the Office of the Government of the
Russian Federation, the State Duma of the Russian Federation, the Co-ordinating Council of
Employers’ Associations of Russia, the Federation of Independent Trade Unions of Russia,
the RF Ministry of Health and Social Development, the newspaper “The Country and Us”
and the “Partnership” publishing house.
123
In the course of the seminar, participants were addressed by the following:
the Director General of the Swedish National Labour Market Board, Bo Bylund, and the
head of Russia’s Federal Labour and Employment Service, M.A. Topilin, on the situation in
the national labour markets and the employment of people with disabilities;
the Deputy Minister for Industry, Employment and Communications, Ms Mona Stål, on
national policy with regard to people with disabilities.
Participants heard and discussed reports on the study visits to the Swedish pilot regions by
the head of the federal state employment agency of the Voronezh and Vologda regions and
the Republic of Karelia.
The head of the Federal Labour and Employment Service, MA. Topilin, and the director of
the project, Ragnar Gussing, signed a protocol approving the initial report on the project
“Occupational rehabilitation and employment of people with disabilities”.
124
Education for people with learning difficulties in the Russian Federation
Mr Boris BELEVSKY
Federal Ministry of Education
Moscow
Russian Federation
Education for people with learning difficulties in Russia has a long history. Exactly
200 years ago, in Pavlovsk, near St Petersburg, the First Experimental Academy was opened,
in which 12 deaf children were raised and taught. A year later, in 1807, the first educational
and training institution for blind children was opened here, and this served as a model for
the creation of similar learning centres in other cities across the Russian empire. The history
of the establishment and development of special education in Russia therefore goes back
two centuries. I shall not describe all the stages of its development, but I shall try to give you
an idea of the current system of special-needs education and the prospects for its further
development.
Alongside the changes that took place in Russia’s socio-political and economic life in the
1990s, these years were also a time of change in the State's attitude towards children with
disabilities, and of re-appraisal of their civil rights. The new approach required
modernisation of special-needs education practices in line with the democratic values of
civil society, and the need arose to create a new type of special-needs education system, the
main features of which are:
-
inclusion of all children with special educational needs in education, with no exceptions;
identification of children’s special educational needs at the earliest possible stage
(during the first months of life);
shortest possible time between the first occurrence of a developmental disorder and the
provision of a combination of medical, psychological and pedagogical assistance to the
child;
a flexible standard for special needs education, to include, alongside an educational
standard, a standard for the shaping of a child's ability to manage in life, taking into
account his/her individual potential and needs;
a shift in the conceptual emphasis in special needs education towards the personality
and socio-emotional aspect, development of self-awareness and conscious regulation of
behaviour in a social group;
offering families a choice of organisational forms of schooling;
extension of the time boundaries of special needs education (lifelong learning);
targeted schooling of the child outside the educational institution;
inclusion of parents in the process of special education and schooling;
training of a new generation of specialist staff.
The main point about the current period of development of the special needs education
system is that it is transitional in nature. It is important to ensure that the system evolves to
a new stage, not breaking down but developing the system that we already have.
One of the most important vectors in modernisation where content is concerned is the
creation of a new mechanism of interaction between special-needs and general education
institutions, with a transition from autonomy for general and special needs education to a
unified education system.
125
Up until the end of the 20th century, the special needs education system comprised three
strands:
-
pre-school educational institutions of a compensatory type;
special needs educational institutions for pupils with developmental disorders;
special needs classes for pupils with developmental disorders at general educational
institutions.
The real-life situations encountered required this structure to be supplemented with new
structural elements in the form of centres for the early identification of children with
developmental disorders and early comprehensive assistance for them, as well as
educational institutions for children in need of psychological, pedagogical and sociomedical aid. Order No. 575 of the Russian Ministry of Education, dated 18 October 1999,
established a state scientific institution known as the Centre for Early Diagnosis and Special
Assistance for Children with Identified Developmental Disorders. This Centre, set up in
January 2000, is based at the Institute of Special-Needs Pedagogy at the Russian Academy of
Education. The Centre's main areas of activity were defined as follows:
-
fulfilling of the functions of organiser and co-ordinator at federal level;
conducting research work, developing programmes and methodologies and running
experiments;
stage-by-stage development of federal and regional programmes for early diagnosis and
special assistance;
gathering, analysing, accumulating, documenting and disseminating information;
expert evaluation of scientific developments in the field of early diagnosis and special
assistance to children with developmental disorders;
organisation of training and retraining and upgrading of staff skills.
Perhaps the most important outcome of the Centre’s work in the early stages was the
establishment of a project for a unified state system of early identification (in the first few
months of life) and early special needs assistance for children with developmental disorders,
which was incorporated into the Russian Federation Education Ministry’s programme
“Development of practical psychology in the education system” (2003-2010). This made it
possible to frame a strategy and policy for the creation of a system of early assistance in
education, establish the short- and longer-term tasks, mark out the main phases and
determine their sequence.
The adoption of a Standard Regulation for educational institutions for children in need of
psychological, pedagogical and socio-medical assistance (ratified by Resolution No. 867 of
the Russian Federation Government of 31.07.98) paved the way for the regulation of
educational, rehabilitation-related and health improvement activities of educational
institutions for children experiencing difficulties with development, learning and social
adaptation. This Standard Regulation has become the legal basis for the functioning of
centres for: adaptation; diagnosis and consultation; psychological, medical and social
support; psychological and pedagogical rehabilitation and special-needs education; social
and vocational guidance; therapeutic pedagogy and differentiated learning, and other
measures. There are currently about 900 such centres in the Russian Federation.
The Institute of Special Needs Pedagogy of the Russian Academy of Education has been
assigned a leading role in transforming the special needs education system by the Russian
Federation Ministry of Education and Science to. Studies carried out at the Institute have
126
clearly demonstrated that by meeting special educational needs at an early age it is possible
to prevent the appearance of new special educational needs and ensure that the child
realises their maximum rehabilitation potential and that the extent of their social inadequacy
is lessened. Data obtained prove that for some children (25-27%) properly organised early
and comprehensive correction of development disorders opens up potential for full
inclusion in the general education curriculum.
In recent years, the accent in work with children with special needs has shifted to pre-school
age. Schooling, upbringing and special-needs work is currently under way at 10 486 preschool educational institutions of the compensation and mixed types, where 442 700
children are receiving education. Verbotonal centres (dealing with hearing and speech
disorders) are being opened, where the focus is on development of residual hearing and
pronunciation in children with hearing and speech disorders (there are 18 such centres in
the Russian Federation).
The next component in the special-needs education system is special-needs educational
institutions for pupils with developmental disorders. The network of these institutions
comprises 8 types of special needs general education schools (residential schools), providing
education under 15 programmes, as well as general education schools for individual homebased schooling for children with disabilities. There were a total of 1 936 of these in the
2005/06 school year, according to Rosstat data, with a total pupil contingent of 235 410.
I should make the point that over the last two years, for a variety of reasons, including those
previously mentioned, there has been a reduction both in the total number of educational
institutions of this type and in the contingent of pupils at them. In parallel with the fall in
the pupil contingent at special needs schools, there has been an increase in the number of
children with disabilities receiving schooling in special needs classes organised at general
education institutions. The number of pupils in special needs classes for mentally retarded
children has increased by almost 4 times over the last 15 years, and by more than 3 times for
children with developmental delay. During the past school year, a total of 187 900
individuals have received schooling in these classes, including:
-
25 726 individuals in 3 809 classes for children with intellectual impairments,
148 719 individuals in 14 230 classes for children with developmental delay,
7 353 individuals in 811 classes for children with deficiencies in their physical
development.
Active use of the E.I. Leongard method and processes that have been introduced by 18
verbotonal centres in the Russian Federation in recent years have enabled almost 1 500
children with hearing impairments to receive schooling at a general education day school
alongside children with normal hearing. In addition, over 100 000 children with slight
sound articulation disorders or writing disorders visit almost 5 000 speech therapy units at
general education institutions.
Current law allows integrated schooling to be organised for children with special needs at
general educational institutions. At the same time it should be borne in mind that
development of integrated forms of schooling for special-needs children, and particularly
for children with mental retardation, at general educational institutions without having first
created the necessary conditions for organising the accommodation and schooling of
children of this category (including the presence of a corresponding material base,
specialised educational programmes, training for the teaching staff etc.) is inadmissible. To
127
do so would not only fail to ensure full integration for special-needs children, but would
also adversely affect the quality of the educational institution's work with other children.
Training of specialists for the special needs education system (known as "defectology" in
Russian) takes place at faculties or departments of special needs pedagogy1 at 33 higher
education institutions and 17 educational institutions providing secondary vocational
education throughout the country. In addition, there are a number of higher educational
institutions with accreditation to train teachers in various fields of special-needs pedagogy
(teaching for the blind, teaching for the deaf, teaching children with mental disorders,
speech therapy, special pre-school pedagogy and psychology). Because of a shortage of
defectology specialists at educational institutions, the further training system is playing a
major role in improving the special-needs education process in those establishments. There
are currently 94 additional vocational education institutions functioning in Russia. They
include 11 faculties of special-needs teaching and psychology and 25 independent sections
for defectology teaching methods.
Under the Federal Law "On Social Protection for People with Disabilities in the Russian
Federation" passed in 1995, one of the most effective methods of raising the social status and
level of protection of people with disabilities is for them to acquire a full vocational education,
which should give them the opportunity to play a full part in the life of society, making their
own efforts to free themselves from the need to receive various social benefits and to live on
their own earnings.
The right of people with disabilities to receive a universally accessible, free initial, secondary
and tertiary vocational education under an individual rehabilitation programme was
confirmed by the Russian Federation National Education Doctrine, approved by Russian
Federation Government Resolution No. 751 of 14.10.2000.
Over the last 5 years there have been some small but nonetheless positive changes with
regard to vocational education for people with disabilities.
In 2003, the Blueprint for Vocational Education for People with Disabilities was drafted and
ratified. Alongside higher education institution staff, representatives of central boards of allRussian societies for the deaf, the blind and people with disabilities and the Institute of
Special-Needs Pedagogy of the Russian Academy of Education played an active part in the
drafting of this Blueprint.
In October 2003, a competition was announced to identify the federal and regional teaching
methods centres for work with disabled people among vocational education institutions, the
results of which were announced in May 2004. The competition results led to the ratification
of 5 federal pilot teaching methods centres for higher vocational education among people
with disabilities, and also regional teaching methods centres: 7 for higher vocational
education (one for each Federal region), 18 for secondary vocational education and 26 for
initial vocational education.
1
The Russian term дефектология (defectology) relates to the education of children with sensorial, physical,
cognitive, and neurological disabilities and includes four major domains: education of the hard of hearing and
deaf; of the visually impaired and blind; of children with mental retardation; and of severe speech-impaired
children.
128
In this way a system of benchmark vocational education institutions on all three levels was
set up to promote the development and introduction of innovative ways of working with
pupils and students with disabilities, which took in every federal region of the Russian
Federation.
As part of the “Accessibility of education for persons with developmental disorders” section
of the Federal Programme for the development of education for 2002-2005, there was a
minor reinforcement of the material and technical base at some federal and regional
teaching methods centres. Equipment for specialist auditoria adapted for the teaching of
people with disabilities was supplied to 11 higher education institutions (at a total cost of
30 million roubles); 16 colleges and technical colleges received medical diagnostic
equipment and sports and physical training equipment (to the tune of 16 million roubles),
and 10 initial vocational education institutions acquired workshop equipment worth
10 million roubles.
Russian Federation Government Resolution No. 803 of 23 December 2005 “On the Federal
Targeted Programme for the Development of Education for 2006-2010” envisaged the
introduction of special higher levels of funding for the education of people with special
needs at educational institutions at all levels of education, for which 205.71 million roubles
was to be provided from the Federal budget over 5 years.
The number of special needs pupils and students has increased. In 2001, in all forms of
education, at 259 higher education institutions in the Russian Federation there were a little
over 5 400 people with disabilities receiving teaching, whereas in the 2002-2003 school year, in
the 299 higher education institutions coming under the Russian Ministry of Education alone
the number of students with disabilities had risen to 14 500 individuals. In the last school year
(2005-2006) in all forms of schooling at the 300 plus higher education institutions coming
under the Russian Ministry of Education and Science, there were 17 666 students with
disabilities receiving education (of whom 12,584 were in disability groups I-II). There were
over 16 500 special needs students at secondary vocational education institutions and 20 900 at
initial vocational education institutions.
The leading establishments in terms of numbers of students with disabilities are: the
Russian State Social University, where 386 individuals are studying at day classes (208),
evening classes (6) and on correspondence courses (172); the Yakutia State University (276
students); and the Moscow State Institute for Social and Arts Studies (302).
Forty-seven higher education institutions now have over 100 students with disabilities, and
at 11 of these they number more than 200. Such a concentration of students with disabilities
points to a need for the creation of specialist centres at these institutions to manage support
for people with developmental disorders and oversee their psychological, pedagogical and
socio-medical rehabilitation.
There is experience of such work at higher education institutions in the Russian Federation.
We have three authorised institutions offering special-needs educational and rehabilitation
programmes for students with disabilities under an order from the government: they are the
Bauman State Technical University in Moscow (180 students with disabilities), the Institute
for Social Rehabilitation at the Novosibirsk State Technical University (230 students with
disabilities) and the State Educational Institution for Tertiary Vocational Education for
people with disabilities affecting the locomotor system ("Moscow State Institute for Social
and Arts Studies"). The latter is the only residential institute in the world where students are
129
supported by the State (free schooling, food and accommodation). Employees at the
Institute (teachers and medical staff) have developed a new area in higher education
teaching, called “therapeutic pedagogy” (a combination of medical, recuperative,
psychological and speech therapy assistance). Provision of such assistance is envisaged in
the study schedule from year 1 on.
The Bauman State Technical University in Moscow has been providing schooling for people
with hearing difficulties since 1934, and is the leader in vocational education for people with
disabilities.
Among the higher education institutions which have taken the initiative in providing
schooling for people with special needs, one of most progressive is Chelyabinsk State
University, with over 200 students with disabilities, where an Institute of Accessibility of
Higher Education has been set up. This incorporates a regional education centre for people
with disabilities which has broad functions relating to organisation and methods
(concluding agreements linked to learning support for people with disabilities, overseeing
the work of the centre’s territorial sub-divisions, keeping a database of potential graduates
with disabilities, drafting educational rehabilitation programmes, staff and teacher training
etc.); the centre is also involved in the organisation of the intake, pre-higher-education
preparation and organisational, methodological, psychological and pedagogical support for
students with disabilities during their studies, and maintains links with their parents.
Russia is building up quite extensive experience of vocational training for those with total or
partial visual impairment at higher educational institutions, although the development of
this training is complicated by the predominating segregational model of education and
upbringing at a special-needs school and the frequently passively benign (i.e. indifferent)
attitude of students with normal sight to students with visual impairments. In social and
psychological terms the sphere of humanities is a more favourable educational field for
students with severe visual impairment.
At the A.I. Herzen Russian State Pedagogical University, for example, within the Faculty of
Special Needs Pedagogy a resource centre has been set up to provide support to people with
sight-related disabilities (over 100 students) under higher education institution conditions.
The introduction of computer equipment, modern technologies and distance learning for the
non-sighted is currently being expanded. At educational institutions in the cities of
St Petersburg, Moscow, Yekaterinburg, Nizhniy Novgorod, Novosibirsk and Saratov, there
is increasing use of special computer equipment with a Braille display adapted for those
without sight, “talking” books and books with raised points on the page, and magnifying
systems for those with weak sight.
There are currently over 1 300 students with sight-related disabilities at higher education
institutions in Russia. Over 5 000 non-sighted specialists are working in a specialist area
they have acquired. At the same time job-seeking is a problem for this category of people, as
it is for people with locomotor disabilities.
The fundamental principle for government policy in respect of people with disabilities must
be their comprehensive rehabilitation, meaning vocational, medical and social, enabling
students with a disability to attain and maintain an optimal level of independence and
activity. Vocational rehabilitation allows people with disabilities to restore their
competitiveness on the labour market and creates a platform for equal opportunities.
130
Statistics show that over 65% of people with disabilities graduating from secondary and
tertiary vocational education institutions find jobs in the specialist area they have studied
(over 90% in the case of the Moscow State Institute for Social and Arts Studies), whereas
fewer than 20% of all people with disabilities of working age have full-time work.
The socio-medical rehabilitation measures deployed in parallel with the study process as
part of the implementation of individual rehabilitation programmes further counterbalance
limitations in everyday activities.
Meanwhile, at both federal and regional levels it has not yet been sufficiently appreciated
that resolving vocational rehabilitation issues for people with disabilities requires
interaction between a number of agencies, including careers guidance, provision of access to
vocational education geared to the needs of the contemporary job market and the individual
needs and idiosyncrasies of the person in question, vocational adaptation to the workplace
and rational placement in work.
The activities of higher education institutions as regards provision of special needs
education and rehabilitation services are not institutionalised, and there are no norms for
the organisation of study and rehabilitation processes or for material, technical,
psychological, pedagogical, personnel, special needs methods and rehabilitation support.
Mechanisms for the licensing and certification of educational and rehabilitation activities
have not been devised, and a state standard for vocational rehabilitation of people with
disabilities has not been ratified. So far no system for the training or re-training of specialists
to work with students with disabilities under conditions of integrated schooling has been
organised, and there is no unified approach to implementation.
The issue of special needs education and rehabilitation technologies is one of the main
problems in developing a system of continuous vocational education for people with
disabilities. Designing a special technology base for schooling this contingent is not possible
without taking into account the main trends in the development of education technologies.
The following steps are essential to the shaping of a technological base for a continuous,
multi-level vocational education system for people with disabilities:
-
firstly, give preference to intensive and high-tech study processes;
secondly, give priority to IT technologies permitting access to personal computers as a
tool for vocational activity and performance of activities that are difficult or impossible for
people with disabilities to access because of specific limitations on what they can
physically do.
Despite the evident variety in purpose, content and implementation, one absolute
requirement for the achievement of real and long-term progress in the use of special needs
education and rehabilitation technologies is their systemic integration into a unified
technology base in the state vocational education system. In this connection, an essential
condition for such integration is universality of the state technology base for vocational
education in respect of people with disabilities. Ignoring their special needs may lead to
restriction of the educational and vocational capability of this category of citizens, especially
in a climate of globalisation of education and intellectual activity. A specially organised
federal educational information programme for the use of special study technologies for
people with disabilities within the system being established will serve as a tool for improving
the quality of education.
131
Experience gained in Russia and abroad in the organisation of vocational education for people
with disabilities points convincingly to a need to provide legal and organisational forms and
content for the activities of educational institutions in creating special needs educational
programmes for this contingent of students.
132
32 425
19 232
352
300
Information on special needs educational institutions for children with developmental
disorders who are engaged in study
Of which
children with
disabilities
36 548
5 013
8 366
8 434
219
717
972
Of which
orphans
162 027
24 596
9 147
9 862
1 958
5 545
1 307
688
No. of
pupils
Of which
residential
schools
986
219
75
73
2 396
10 768
10 563
5 537
No. of
Institutions
1356
222
87
87
15
55
49
8 561
Name of institution
18
94
67
49
2 829
No.
72
1 371
227
38 502
19 263
2 823
69 293
62
235 410
131
1.
2.
3.
4.
5.
6.
7.
8.
24
Schools for the mentally retarded (type VIII)
of which, residential schools for orphans
Schools for deaf children (type I)
Schools for children with impaired hearing
(type II)
Schools for blind children (type III)
Schools for children with impaired sight (type IV)
Schools for children with severe speech
impairments
(type V)
Schools for children with locomotor system
disorders (type VI)
Schools for children with developmental delay
(type VII)
Schools for individual home study for children
with disabilities
9.
1936
1 364 (with
16 6431
residential
pupils)
Of the total number of special needs schools (residential schools), 456 are located in rural areas, with a total number of 42 985 pupils.
133
REPORT OF WORKSHOP 2
EDUCATION, VOCATIONAL TRAINING AND EMPLOYMENT OF PEOPLE
WITH DISABILITIES
Chair:
Dr Hartmut HAINES
Chair of the Council of Europe Committee on the
Rehabilitation and Integration of People with disabilities,
(CD-P-RR)
Ministerial Adviser
Federal Ministry of Labour and Social Affairs
Germany
First Vice-Chair:
Mr Pavel PANKRATOV
Head of the Federal Agency on Employment
Russian Federation
St Petersburg
Second Vice-Chair:
Mr Inge OVESEN
Director
Nordic Co-operation on Disability
Rapporteur:
Ms Ellinor Joan SUNDSETH
Head of the Secretariat of The Norwegian State Council on Disability
Norway
This workshop had six lecturers:
-
Ms Kari BRUSTAD, Deputy Director General, Ministry of Education and Research, Oslo,
Norway
Mr Lev SYTIN, General Director, Centre for Medical Commission and Social
Rehabilitation of People with Disabilities, Novo-Kuznetsk/Oblast, Kemerowo/Siberia,
Russian Federation
Mr Nikolay AGARKOV, Director of the Vocational Training Centre in Novokusnesk,
Oblast / Kemerowo, Siberia, Russian Federation
Dr Erich KNUELLE, Senior Medical Officer, Department Manager, Job Planning and
Rehabilitation, Ford of Germany, Germany
Mr Pavel PANKRATOV, Head, Directorate for Employment, Russian Federation
Mr Boris BELIAVSKIY, Director, Department for Youth Policy and Upbringing and
Social Security for Children, Ministry of Education and Science, Russian Federation
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Ms Kari BRUSTAD, Deputy Director General, Ministry of Education and Research, Oslo, Norway
Ms Brustad described education for all as a basic principle of Norwegian educational policy.
This means that adapted education is available to all children, regardless of their social or
cultural background, gender, geographical provenance and special needs. The national
policy is to give all children an equal right to education.
She further said that, until 1975, Norway had a separate Special Schools Act. In 1992, former
state-run special schools were closed down or transformed into resource centres. No more
than 1% of children with disabilities are now in special schools.
The state level has certain tools available to fulfil its obligations and ensure equality, such as
laws, finances, administration, research and documentation - and user participation is
essential. To describe user participation, she mentioned advisory bodies such as the National
Parents Committee, the Council for Inclusive Education, which includes six representatives
of organisations for people with disabilities and which is linked to the Directorate for
Education and Training, the Higher Education User Forum and the Norwegian State
Council on Disability and provides advice to ministries in particular and the civil service in
general.
Ms Brustad then provided some brief information on Norwegian kindergartens. When it
comes to pre-school, this is a municipal responsibility and attendance is voluntary.
The Ministry of Education and Research has promised full access and low costs by the end
of 2007. Children with special needs have prioritised access and are given additional
support. Some children with special needs may, according to the Education Act, be entitled
to special needs pre-school education free of charge.
One of the challenges here is the provision of information from preschools to compulsory
schools to prepare for the transfer of children with disabilities. Another challenge is the
teachers’ expertise. There is a lack of qualified pre-school teachers. Unfortunately, this may
lead to the children achieving less knowledge and fewer skills.
She then talked about facts relating to and the challenges involved in the compulsory
schooling system. As mentioned earlier, adapted education and inclusion is the basic
principle. Compulsory schooling provides a 10-year education, is a municipal responsibility
and is free of charge. Pupils who do not benefit satisfactorily from ordinary tuition are
entitled to special education. Such special education must be planned in consultation with
the pupils and their parents and considerable emphasis is to be placed on their views.
Pupils with special educational needs may be given tuition either in small groups in
ordinary classes individually. The criterion here is what provides the best education and
learning outcome for the child.
Every Norwegian student between 16 and 19 years of age has a statutory right to at least
three years of upper secondary education leading to higher education or four years of
vocational training leading to a trade or journeyman’s certificate. Those opting for
vocational training can obtain the necessary qualifications for entrance to higher education
by taking an additional one-year course. This education is not completely free of charge as
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the students have to buy their own books. However, the present government plans to make
it free of charge during its four-year period in power. Students with special educational
needs may spend an additional two years at school. Students who so require are entitled to
tuition in sign language or Braille. The challenge here is often the teacher’s qualifications.
Another challenge involved in secondary education and training is that there is a drop-out
rate of up to 36%. Some students only attain lower level qualifications. Do we have systems
to utilise lower levels of education?
The Ministry of Education and Research has launched a new reform, the Knowledge
Promotion Reform, in both compulsory and upper secondary schools. This stipulates a new
curriculum, which includes clear objectives specifying the level of competence expected.
Less detailed and basic skills are given priority and up to 25% of the lessons in individual
constituent entities can be spent on other constituent entities. The choice of work methods is
delegated to the local school, in order to allow for tuition adapted to each and every student.
The reform recommends further education of the teaching staff.
According to the Higher Education Act, educational institutions must have plans of action to
improve access for all students. Students are also entitled to an individual education plan for
larger courses - a useful tool for students with disabilities. This plan must ensure a closer
and more binding relationship between the institution and the individual student. Among
other things, the plan must show how the institution is making arrangements so that the
student can achieve a defined learning objective within a standardised period of time.
University colleges and universities must also have a contact person or advisor for students
with disabilities. Access to both buildings and curricula is a challenge for students with
disabilities taking higher education. There is also an obstacle concerning job opportunities,
and the transition between studying and entering the job market is difficult.
Ms Brustad concluded by stating that the percentage of students with special needs taking
higher education had increased enormously over the past 10 years. In order to achieve
adapted education for all, inter-ministerial co-operation and cross-sectoral co-operation are
needed.
There has been a tendency to point out the problems of individual children and students,
and not to search for system-made barriers. The Norwegian authorities are asking how the
educational system can reduce differences and barriers in society.
The vocational rehabilitation of people with disabilities: issues and the impact on labour
resources.
Mr Lev SYTIN, General Director, Centre for Medical Commission and Social Rehabilitation of
People with Disabilities, Novo-Kuznetsk/Oblast, Kemerowo/Siberia, Russian Federation
Mr Sytin started by pointing out the country’s demographic problems The current
population of Russia is 142.4 million people, making it the 7th largest population in the
world. However, the population decreased by 4.9 million from 1989-2005. There has also
been a decrease in the expected lifespan; in 1960, Russia had its highest expected lifespan
(70.4 years). In 2004, it reached its lowest level (64.8 years). The birth rate fell from 23.2 per
1 000 in 1960 to 10.0 per 1 000 people in 2005. Depopulation in Russia is accounted for by a
low birth rate and a high mortality rate. In 2005, the mortality rate was 1.7 times that of the
birth rate.
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About 80% of the people who die prematurely are men of active working age.
In 2002, according to the Russian Statistical Service, 60% of the total population were of
working age. Of these, only 45% worked in the country’s economy. Today 21.5% of Russia's
population have reached retirement age, which significantly increases the burden on
individuals of working age. Mr Sytin referred to President Putin's statement that the
demographic situation has become modern Russia’s most critical problem.
Mr Sytin said that the measures implemented by the government to overcome the
demographic crisis did not give rise to much optimism concerning persons with a disability.
The role of disability rehabilitation in the improvement of the country’s labour resources is
not mentioned at all.
In May 2005, 11.1 million adults with disabilities and 600 000 children with disabilities were
registered in Russia. As Russia has no adequate form of registration of people with
disabilities, these data were taken from the Federal Register of the Pension Foundation.
According to forecasts from the Federal Bureau of Medical and Social Evaluation, there will
be 15.3 million adults with disabilities in 2015. Taking into account the population forecasts
for that date, 6-6.5 million of these will be of working age.
According to Mr Sytin, it is vocational rehabilitation that plays a role in the system of
disability rehabilitation. Vocational rehabilitation is primarily important because the
majority of people with disabilities and their families need an additional income. Secondly,
it is work that helps to provide equal social status for people with disabilities.
In the 1980s, the country had more than 400 specialised enterprises and 43 workshops for the
priority employment of workers with disabilities. Russia’s Ministry of Social Security had
55 vocational schools where 8 000 students were educated. Today, only a few specialised
enterprises have survived and 42 specialised educational institutions remain. The
educational institutions are concentrated in the European part of Russia and there are nearly
none in the far eastern part of the country.
When it comes to institutions offering higher education which is accessible to students with
a disability, all of these are located in Moscow.
Vocational rehabilitation in Russia is regulated by three main federal laws governing: the
employment of the population in the Russian Federation, the social protection of people
with disabilities in the Russian Federation, and education. According to these federal laws,
individuals with disabilities are guaranteed a working career by for instance, the creation of
quotas for employing workers with a disability, the reservation of jobs suitable for persons
with a disability, and the teaching of new professions to persons with a disability, etc.
Since the existing legislation does not provide for sanctions against employers who do not
observe the quotas and the factors encouraging enterprises no longer exist, there is now no
mechanism for organising disabled people’s employment in most regions. The situation now
is that employers have started to deny employment to people with a disability and stopped
providing information on suitable vacant jobs. As a result, only 10-14% of those with a
disability who are of active working age are employed, compared to in 1988, when 25% of
the total number of people with disabilities were employed. Despite the constant increase in
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the number of persons with a disability, vocational rehabilitation does not yet play any
positive role in increasing these persons' participation in working life.
Mr Sytin’s conclusion in brief is that:
•
the country’s constitution states that every citizen has the right to work, so the state must
construct its policies without discriminating against people with disabilities;
•
millions of working people with disabilities can provide an adequate quality of life for
themselves and also make a significant contribution to the country’s economy;
•
it is necessary to develop and implement a national programme for the rehabilitation of
people with disabilities, including a section on vocational rehabilitation;
•
new laws must be passed to ensure a decrease in unemployment among people with
disabilities.
The vocational rehabilitation and training of persons with disabilities
Mr Nicolay AGARKOV, Director of the Vocational Training Centre in Novokuznetsk/Oblast,
Kemerowo/Siberia, Russian Federation
Mr Agarkov said that persons with disabilities were entitled to lead an independent life and
have the same rights as other people. He then went on to say that his talk would primarily
focus on young people with disabilities who require vocational rehabilitation and
habilitation.
Ensuring the integration of persons with disabilities becomes more realistic if it is assumed
that the limitations in question are related to the environment.
The vocational rehabilitation of persons with disabilities comprises:
-
vocational orientation
training
assistance in getting a job.
The education system’s most important task is to help each person with a disability to have
the opportunity to acquire knowledge and new skills using the necessary aids. Persons with
disabilities must also learn to communicate in an environment that is not particularly
adapted to their disabilities.
Vocational orientation is extremely important to a person’s further career. The training
centre where he is director, the state-run humanitarian-technical boarding school for
vocational training in Novokuznetsk (NGGTK), has good experience of vocational
orientation for persons with disabilities. Since 1992, the school has had a separate
department working on this. This department was established as a result of a three-year
joint-venture project with the Volmarstein Evangelical Foundation in Rhein-Westfalen,
Germany. The European model for assessing a disabled person’s ability to work is used.
Professionals advise persons with disabilities by examining their physical abilities, their
level of knowledge, their ability to learn, and their personal working abilities and qualities.
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They then provide career guidance and advice in connection with specific choices of
occupations and educational establishments. It takes 21 days to carry out this test.
All employment offices in Russia have departments providing vocational orientation for
persons with disabilities. The employment office in Novokuznetsk collaborates with the
NGGTK on vocational orientation.
He then talked about the necessity of training and said that, in order to compete in the
labour market, persons with disabilities must have just as good professional expertise as
those who without disabilities. The NGGTK applies the following principles:
-
The main goal is to contribute to the full integration of persons with disabilities into
society.
Employers’ requirements regarding employees’ expertise should be taken into account.
Students should not only be trained in practical skills but also be given knowledge that
will enable them to acquire the necessary skills.
The occupation must be in demand in the labour market and must be mobile.
The school currently provides training in four vocational constituent entities at an advanced
level and six vocational constituent entities at a basic level. The collaboration with Germany
on the rehabilitation of persons with disabilities has helped to shape these vocational
constituent entities.
The school spends a lot of time on the social rehabilitation of persons with disabilities and
their integration into society. The school has counsellors, psychologists, environmental
therapists and assistants who focus on social rehabilitation programmes.
Mr Agarkov then talked about the need for assistance in getting a job, and said that each
year the school trains 90-110 new students. Sixty-seven per cent of these obtain employment,
and 15% work independently at home. The school has analysed the situation and noted that
the following problems arise during the training and employment process:
1. Both at the advanced and basic levels, the state vocational training goals are
formulated on the basis of an average student, but vocational training for persons
with disabilities is very different to normal vocational training.
2. Workplaces are not usually adapted for persons with disabilities. This means that
persons with disabilities cannot compete with job-seekers that do not have
disabilities.
3. NGGTK is a national school. This means it has students from all over Russia. The
problems related to covering the travel expenses of students with disabilities who
come from other parts of Russia must be resolved.
4. Adults who have become disabled are not taken into account in the prevailing
curricula. Integrated, step-by-step curricula must be prepared for this group in
particular.
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The employment of people with disabilities at Ford of Europe – a role model for European
industries
Dr Erich KNUELLE, Senior Medical Officer, Department Manager, Job Planning and
Rehabilitation, Ford of Germany, Germany
In his presentation, Dr Knuelle discussed the possible interests of an employer when it
comes to employing or retaining workers with disabilities. He first pointed out that, in its
Disability Management scheme, Ford of Germany focuses on abilities instead of disabilities;
the focus is on maintaining and improving the abilities of its employees.
The company has faced growing challenges, such as demographic changes, an ageing
workforce, a growing number of mental diseases and a longer working life. Other challenges
are less work left in the company for non-skilled employees and globalisation, resulting in
the transfer of work. New instruments and integration methods were required. By
implementing Disability Management and focusing on abilities, Ford of Germany had
achieved excellent economic results from hiring about 300 additional people.
A new law has been introduced in Germany stipulating that employers must be aware and
ensure that workers do not fall out of the job market; such tendencies are supposed to be
noticed at an early stage.
In 2001, Ford of Germany implemented new processes to integrate employees with
disabilities. The company started an interventional programme based on an early warning
system to prevent the development of impairment and avoid dismissals, to integrate people
with disabilities instead of creating special segregated jobs, and to find the right job for each
employee by means of a profile-matching system – the right person at the right place. Other
elements are structured rehabilitation and integration processes and paying attention to
factors like family, social environment, colleagues and supervision.
For both the company and the employees, this Disability Management Process has been a
win-win situation.
The benefits to the employees are that it:
• focuses on the person’s abilities, not disabilities. This leads to self-respect, selfconfidence and activates unused resources;
• focuses on finding individual solutions that take account of the employee's social,
private and working environment;
• is a transparent, traceable system and therefore creates acceptance;
• can provide help where help is needed;
• integrates workers with impairments on the existing terms, there is no segregation;
• focuses on maintaining the ageing workforce employed by the company.
The benefits to the employer are that:
• there has been a reduction in absenteeism;
• the expertise of skilled employees remains in the company;
• a good working atmosphere has been established;
• the Ford Company assumes social responsibility for the employees;
• employees continue to be contributors and will not be early recipients of social pension
benefits;
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•
•
•
the company has reduced the costs of social pension funds and health insurances due to
reduced absenteeism and contemporary integration;
the company has a strategy to face demographic change challenges;
productive and satisfied employees are profitable.
To standardise the disability management process, a manual has been developed by the
disability management core team. This manual forms the basis of the company’s integration
work and defines internal responsibilities, shows interfaces with external institutions,
describes processes, etc. In 2006, Ford of Germany became the first company in Europe to
achieve the International Disability Management Standards Council’s (IDMSC) Certified
Award.
Dr Knuelle concluded by stating that employees with disabilities can successfully be
integrated on the existing terms, have regular jobs in the company and receive normal
salaries.
The education, vocational training and employment of people with disabilities
Mr Pavel PANKRATOV, Head of the Directorate for Employment, Russian Federation
Mr Pankratov said that Russian federal law protects persons with disabilities in the labour
market. Employers are not allowed to exclude a person because of his/her impairment.
According to these federal laws, individuals with disabilities are guaranteed a working
career by, for example, the creation of quotas for employees with disabilities, the fact that
jobs suitable for persons with disabilities must be reserved for them and the teaching of new
professions to persons with disabilities, etc.
Employees with disabilities have special rights, such as:
- 35-hour working weeks;
- the workday’s length depends on the medical condition of the person with a disability;
- the employer cannot force an employee with a disability to work overtime;
- the employer cannot force an employee with a disability to work at the weekends;
- an employee with a disability has the right to 30 calendar days’ holiday (longer than
other employees).
There is also a quota (2-4%) for the number of persons with disabilities a company is meant
to have on its staff.
According to Mr Pankratov, one of the obstacles for persons with disabilities when they
finally find a job is the insufficient transportation for this group.
There are rehabilitation agencies/services helping people with disabilities to find jobs.
Mobile centres help persons with disabilities in remote areas. 50 000 persons have been
helped by these services.
Networking takes place with social and medical institutions. He mentioned a RussianSwedish collaboration on work rehabilitation. The Russian authorities wish to implement
the best models from Europe and actively search for the best practices.
He emphasized that there is great potential despite certain obstacles, such as:
- insufficient education;
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-
education that is not integrated;
the lack of education that is available where persons with disabilities live;
sometimes a lack of information on rights and;
difficulties in getting to work or in managing to have a job in remote areas due to
problems with transportation.
There is great potential because there are many jobs available and there are many persons
with disabilities who can take a job under the right circumstances.
Mr Boris BELAVSKY, Director of the Department for Youth Policy and Upbringing and Social
Security for Children, Ministry of Education and Science, Russian Federation
Mr Belavsky said that many special schools have closed down, sometimes before alternative
programmes have been established. There has been parental uproar at the closure of some
special schools.
Each child needs a programme which he/she can master. He said that at the present time
there was unfortunately a shortage of trained staff. According to Mr Belavsky, experience
has shown that the need is for both special classes for children with disabilities and mixed
classes consisting of both children with disabilities and those without disabilities. The level
of the child's development should steer the choice. The hearing impaired need special
classes and the help of speech therapists.
Vocational training has improved. All federal districts must now have training centres for
persons with disabilities.
There is a university for the hearing impaired and other universities and higher education
institutions for students with disabilities, with rooms and workshops that have been
specially adapted. There are also educational programmes for the sight impaired.
The education of people with disabilities in Russia is now the best in the country's history. In
the 1990s, there was a change in approach in the Russian education system. Democracy and
inclusive education were also offered to children with special needs, who were given help to
develop their potential. There was an emphasis on personal and social aspects. Lifelong
education was to be provided.
Pre-schools with facilities for children with disabilities already exist. In about the year 2000,
a state decree was issued ordering early diagnosis and intervention. Sixteen educational
facilities for social adaptation and psychological and educational care and support have
already been established. Such social disabilities have been reduced. Mr Balikavskiy stressed
the importance of pre-school intervention. Corrective intervention is also needed. Now
24 schools have individual programmes in integrated situations.
The inclusion of children with disabilities in general schools was debated for a long time and
was agreed to in 2001. Now there is a tendency to close down special schools and transfer
children with disabilities to ordinary schools.
General discussion
The Chair, Dr Hartmut Haines, asked Ms Kari Brustad from the Norwegian Ministry of
Education and Research about the aims of learning when the group of pupils is
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complex/diverse/heterogeneous. Ms Brustad made it clear that having an impairment and
having special educational needs should not be treated as the same thing. Many pupils with
disabilities have no need for special education or special adaptations. If students with
disabilities have access to buildings, language, Braille, etc., then the system level has been
adapted. She used sign language examples to illustrate this: a sign language curriculum that
is the same as other curricula and the combined training of teachers and parents have
created a good framework. Many people do not require special education pursuant to
individual administrative decisions.
Then she commented on adapted education: schools are to be characterised by the principle
of adapted teaching. This means that all the pupils are to be given an education that is
adapted to their needs. The solution for many is thus the school’s deliberate focus on
safeguarding the interests of each pupil. Special education is a form of adapted education
which requires an individual administrative decision, following which the pupil can
immediately start on an individual education plan.
Ms Luisa Portugal, National Secretary and Portuguese Secretary of State Idalia Moniz asked
Ms Brustad, Norway, about higher education financing schemes for students with
disabilities. Ms Brustad briefly mentioned the obligations stipulated in the legislation, cf her
main presentation, and then said that the individual education institute had to find room in
its own budget. She also mentioned immediately afterwards that, through Norway's health
and social welfare legislation, there are schemes for financing assistants, interpreters,
textbooks in Braille/sound books, etc, so that the individual education institute is not
responsible for financing these.
Ms Giusi Pajardi, Head of the Secretariat of the Council of Europe Development Bank (CEB),
gave a brief presentation of the Bank. She said that the Council of Europe Development
Bank had already participated in the Ministerial Conference in Malaga, and that the Action
Plan to promote the rights and full participation of people with disabilities in society makes
explicit reference to the bank as an instrument that CEB member countries could use for its
implementation. Many policies aimed at improving the quality of life of persons with
disabilities and integrating them into society require a financial investment. The CEB
contributes to the implementation of social investment projects to promote social cohesion
along three sectoral lines: strengthening social integration, managing the environment and
developing human capital. According to its Articles of Agreement, aid to refugees, migrants
and displaced persons is one of its statutory priorities and the CEB also treats with the same
consideration projects in favour of populations regarded as vulnerable, such as people with
disabilities. All projects have to conform to the political and social aims of the Council of
Europe and the eligibility criteria set by the CEB's bodies.
The loan applications are submitted by the member country, whether they come from the
state itself, local and regional authorities or financial institutions approved by the state. The
Bank grants loans of varying amounts, usually not exceeding 50% of the total cost of
the project. The Bank’s lending conditions are very advantageous, thanks to its AAA rating,
with which the Bank is able to raise resources on the international financial markets on very
favourable terms and pass them on to its borrowers, adding a small intermediation fee.
The guarantee is provided by the member countries, or the local authorities or first-class
financial institutions. The CEB has already helped to finance day care centres and housing
units for persons with disabilities and, as indicated in the Action Plan, member countries
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could envisage co-operating with the CEB to present projects to ensure the Plan's
implementation at a national level.
Overall conclusion
The six excellent presentations were very different but, as Mr Haines, the chair, concluded:
all the presentations were about abilities, not disabilities. They all focused on the connection
between the employment system on the one hand and the vocational training systems and
educational system on the other.
Input to the declaration prepared by a group attending Workshop 2: “The education,
vocational training and employment of people with disabilities”
–
Education, vocational training and employment all help to develop a person’s potential
and his/her individual abilities and open up new avenues and dimensions for
participation on the part of persons with disabilities. All persons with disabilities should
therefore get the best individual support in these fields.
–
Work towards inclusive schooling with adapted teaching should be an overall goal for
each country’s policy. Ensuring pupils an opportunity to attend their local schools and
thus to live with their own families should be a priority.
–
The starting point for an inclusive working life must be a commitment to everyone being
considered for work without discrimination. Governments have a special responsibility
for creating positive conditions in the way that working life is organised and as an
employer themselves. All employers should be aware of their responsibility to employ
persons with disabilities without discrimination.
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WORKSHOP 3
ROLE OF PUBLIC AUTHORITIES IN PROMOTING EQUAL OPPORTUNITIES
AND FULL PARTICIPATION OF PEOPLE WITH DISABILITIES
Chair: Ms Liubovi GLEBOVA, State Secretary, Deputy Minister of Health and
Legal framework and legislative development
Mr Marc MAUDINET,
Director
National Centre for Studies and Research in Disability
and Social Misfit (CTNERHI)
Paris, France
Abstract
Legal framework and legislative developments
From the mid-1980s (cf Council of Europe Resolution AP (84) 3), the new approach to the
concepts of disability focused on eliminating obstacles and promoting an accessible
environment for people with disabilities. The aim was for them to play a greater part, as
equal partners, in social life and in shaping it.
From then on, disability issues were tackled from the angle of human rights. The underlying
principle was that human rights incorporated the rights of all individuals, with or without
disabilities. Emphasis was also placed on the way in which society marginalised people with
disabilities and on means of transforming the social environment to make it as open as
possible.
In the early 1990s, with Council of Europe Recommendation R (92) 6, which foreshadowed
the Standard Rules on the Equalization of Opportunities for Persons with Disabilities
adopted by the United Nations in December 1993, attention focused on the need to identify
the areas of life essential to participation and equal opportunities. The criteria adopted were
to be used in assessing the level of success in achieving the relevant objectives in terms of
participation and equal opportunities. In particular, the aim was to see whether people with
disabilities were able to take their own decisions, organise their daily lives, have access to
adequate financial resources and cope with the major changes which could affect their lives.
In order to put the legal frameworks and legislative developments that have influenced the
disability sector over the last 30 years into context, we will begin by looking at the new
conceptual approaches and models which are now shaping the issue of participation in
society by people with disabilities and their quality of life. On the basis of the French law on
equal rights and opportunities, participation and citizenship of people with disabilities of
11 February 2005, we will then show how these various principles and approaches can be
put into effect in legislation geared towards the development of an integrated social policy
for people with disabilities.
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Presentation
With reference to the Universal Declaration of Human Rights (1948), the governments of the
Council of Europe1 member states set the aim of ensuring the protection and development of
human rights and fundamental freedoms. This Declaration inaugurated all the legal and
administrative processes which currently govern access to rights (of a fundamental, political,
social, economic and cultural nature) for people with disabilities.2
The personal dignity set out in this Declaration provides the bedrock for subjective rights,
whether in terms of equality or the legitimacy of the social and political system, and so in
this context “dignity”, associated with “free development of the personality”, constitutes the
floor value for human worth. This is affirmed in Article 25,3 which bases human rights on
“human dignity”. The concept of dignity as a fundamental value, indeed a value which
underpins the whole of modern human life, means being able to make one’s own choices
and thus secure recognition of one’s status as a free subject.
At the beginning of the 21st century, particular attention is being paid to human dignity,
which has been elevated to the status of a subjective law that takes precedence over all other
fundamental rights. The “access” concept is central to this attention. The general objective of
the right of access is to ensure that everyone can enjoy and take advantage of all the
particular rights bound up with dignity. This means being able to choose, participate and
become involved in the life of the community. It was the major changes at the end of last
century that prompted the emergence of a new approach to the social management of
disability, centering on the concept of “Universal Design” as a strategy “which aims to make
the design and composition of different environments and products accessible and
understandable to, as well as usable by, everyone, to the greatest extent in the most
independent and natural manner possible, without the need for adaptation or specialised
design solutions”.4
These changes have resulted in a new relationship between society and its citizens who are
forced to live in situations of disability. The organisation of society is based on the idea of a
universal right to citizenship and respect for dignity, which means that everyone is a subject
of law and has a recognised fundamental human identity.
1
Convention for the Protection of Human Rights and Fundamental Freedoms, 1950; Preamble;
www.humanrights.coe.int.
2
Access by people with disabilities to social rights in Europe, Council of Europe, ISBN 92-871-5327-2, 2003.
3
Article 25, “Everyone has the right to a standard of living adequate for the health and well-being of himself
and of his family, including food, clothing, housing and medical care and necessary social services, and the right
to security in the event of unemployment, sickness, disability, widowhood, old age or other lack of livelihood in
circumstances beyond his control.”
4
Council of Europe Resolution ResAP(2001)1 on the introduction of the principles of Universal Design into the
curricula of all occupations working on the built environment is based on the European Concept for
Accessibility, which was established in March 1996 by the Central Co-ordinating Commission for the
Promotion of Accessibility. This resolution aims to help create a society for all by encouraging the member
states to adopt legislation promoting the rights of equal opportunities for citizens with disabilities. It is geared to
ensuring that Universal Design and accessibility become primary considerations in promoting human rights and
the fundamental freedoms.
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International frameworks and developments
European Convention on Human Rights
The Convention for the Protection of Human Rights and Fundamental Freedoms (1950)1
clearly states that human rights and the fundamental freedoms are applicable to all without
exception. Article 14 of the same Convention, on the prohibition of discrimination, lists the
fields in which the enjoyment of rights must be guaranteed, and ends with the assertion that
above and beyond the distinctions mentioned, all other situations are also covered. It follows
that situations of disability, although not explicitly mentioned, are covered by the provision.
In fact, Protocol No. 12 to the Convention for the Protection of Human Rights and
Fundamental Freedoms of 4 November 2000 reaffirms “the fundamental principle according
to which all persons are equal before the law and are entitled to the equal protection of the
law”. It specifies that ensuring equality for all by means of the collective safeguard of a
general prohibition of discrimination does not prevent member sates from taking measures
to promote full and effective equality, provided that there is an objective and reasonable
justification for those measures.
Some major dates in the history of the endeavour to integrate people with disabilities
At the beginning of the 1970s, in the wake of the Universal Declaration of Human Rights
and the Convention for the Protection of Human Rights and Fundamental Freedoms, the
United Nations laid down a number of principles geared to encouraging states to pay
special attention to the situation of people with disabilities. The UN Declaration of the
Rights of Mentally Retarded Persons bears witness to the various countries’ interest in
disability issues.
In 1975, at its 24th session, the UN Commission for Social Development recommended
eliminating the physical and architectural barriers that stand in the way of the full social
integration of people with disabilities.
Article 3 of the UN Declaration of the Rights of Disabled Persons (Resolution 3447,
9.12.1975), which was adopted the same year, stipulates that disabled persons have the
“right to respect for their human dignity” and “have the same fundamental rights as their
fellow-citizens of the same age, which implies first and foremost the right to enjoy a decent
life, as normal and full as possible”. Article 10 of the Declaration stresses the need to protect
such persons “against all exploitation, all regulations and all treatment of a discriminatory,
abusive or degrading nature”.
The states’ interest in the situation of people with disabilities was confirmed in the early
1980s by the International Year of Disabled Persons (1981), which was followed in 1982 by
the launch of the Decade of Disabled Persons. This Decade enabled the United Nations to
specify the scope of the concept of “situation of disability”: “Handicap occurs when
(disabled persons) encounter cultural, physical or social barriers which prevent their access
to the various systems of society that are available to other citizens. Thus, handicap is the
1
Article 1, “The High Contracting Parties shall secure to everyone within their jurisdiction the rights and
freedoms defined in Section I of this Convention”, including the right to life, prohibition of slavery and forced
labour, the right to liberty and security, the right to respect for private and family life, freedom of expression,
prohibition of discrimination, etc. Council of Europe, 1950.
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loss or limitation of opportunities to take part in the life of the community on an equal level
with others”.1 This definition innovates by positing that disability is a function of the
relationship between disabled people and their environment. Furthermore, it goes beyond
mere healthcare and rehabilitation concerns to establish disability as a full social issue in its
own right.
In the mid-1980s the Council of Europe proposed a new formulation of the disability
concept.2 This definition draws on the concern to eliminate obstacles and promote an
environment which is accessible to people with disabilities and in which they are better able
to participate on an equal footing in the life and development of society.
“Failure to protect the rights of citizens with disabilities and improve their opportunities is a
violation of human dignity and entails a heavy financial burden, an attitude that results in
many people becoming unnecessarily dependent on others and incapable of any
economically and socially productive activity. The remedies to such dependency often seem
only financial, whereas payments intended to compensate for incapacity are but one aspect
of any policy in favour of people with disabilities.”
It was around this time that the Council of Europe, together with all the other international
organisations, began addressing disability issues from the angle of human rights (which
include social, economic, cultural and political rights), rather than exclusively considering
health care, illness and rehabilitation. This new human rights-oriented approach to the
situation of people with disabilities basically posits that all individuals are eligible for these
rights, whether they are disabled or not. At the time the stress was also laid on how society
marginalises people with disabilities and how the social environment could be changed,
opening it as far as possible.
This Council of Europe orientation was confirmed in 1992 by the Committee of Ministers in
its Recommendation R (92) 6, geared to introducing coherent policies for people with
disabilities:
“The handicap depends on the person’s relationship with his environment. A handicap is
evident when such people encounter cultural, material or social obstacles, denying them
access to the whole range of services and opportunities available to their fellow citizens.
Thus the handicap involves the loss or limitation of scope to participate in community life
on an equal footing with others”.
After this recommendation, people with disabilities ceased to be a homogeneous group of
individuals all requiring the same type of assistance, to become full citizens eligible for all
the rights granted to other citizens. The definitions and classifications should not be used to
separate or exclude people with disabilities from society by implementing various
rehabilitation or integration measures or institutional mechanisms, but should rather
highlight the means of enabling all individuals to exercise their full citizenship.
Recommendation R (92) 6 stemmed from the work of the first Council of Europe Conference
of Ministers responsible for Policies for People with Disabilities, which took place in Paris in
1
Resolution 37/52 of 3.12.82, Chapter 1, Section C, paragraph 7.
2
Council of Europe Resolution AP(84)3.
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1991. This recommendation initiated the concept of an “integrated policy strategy” as an
alternative form of action, and promoted a strategy combining a traditional social welfare
approach with various anti-discrimination measures. It recommends that member states
endeavour to combat all forms of discrimination by framing comprehensive, coherent and
co-ordinated national policies emphasising self-reliance, full citizenship and the active
participation of people with disabilities.
In 1993, that is to say at the end of its Decade of Disabled Persons, the UN published the
“Standard Rules for the Equalisation of Opportunities for persons with disabilities”.1 The
22 Standard Rules are based on implementation of the following principle: “The principle of
equal rights implies that the needs of each and every individual are of equal importance,
that those needs must be made the basis for the planning of societies and that all resources
must be employed in such a way as to ensure that every individual has equal opportunity
for participation. The term ‘equalisation of opportunities’ means the process through which
the various systems of society and the environment, such as services, activities, information
and documentation, are made available to all, particularly to persons with disabilities.”
The revision of the Council of Europe’s European Social Charter in 1996 neatly rounded off
the 20th century by stressing the prohibition of all forms of discrimination.2 This Charter,
which is the counterpart of the European Convention on Human Rights on the economic
and social rights front, actively defends and develops human rights and fundamental
freedoms and preserves the indivisibility of all human rights, whether of a civil, political,
economic, social or cultural nature. Article 15 of the Revised European Social Charter,
entitled “The right of persons with disabilities to independence, social integration and
participation in the life of the community”, fleshes out the prohibition of any discrimination
against people with disabilities. It stipulates that “disability” is a human rights issue and not
solely a matter for the medical or healthcare field. Above all, however, its stresses that
whatever the origin or duration of the disability, people with disabilities must:
1. have priority access to general schemes for the provision of education and training, and
where necessary to specialised educational bodies. In other words, specialised bodies
must be conceived as facilities to which anyone may have recourse during their lifetime
rather than as places where individuals are assigned to institutional careers;
2. have guaranteed access to employment in an equitable manner, whereby persons with
disabilities who are in sheltered employment should be granted the same protection as
any other employee (fair remuneration, trade union representation, etc.
3. be satisfied that the states are doing their utmost to overcome barriers to integration
(including environmental and transport accessibility and technical aids) and obstacles to
community and cultural life.
If it was on the conceptual front that the most progress was made in the last few decades of
the 20th century, the spotlight in the first decade of the 21st century would seem to be on
practical implementation of the new concepts.
In 2001 the World Health Assembly of the World Health Organization adopted the
International Classification of Functioning, Disability and Health, which sets out a model for
1
Resolution 48/96 of 20.12.93.
2
Part V, Article E – Non-discrimination.
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reflection and action based on interaction between the organic functions and anatomical
structures, and people’s activities, mode of participation and environmental factors.
In 2003, the second Council of Europe Conference of Ministers responsible for Integration
Policies for People with Disabilities (Malaga) was entitled “Improving the quality of life of
people with disabilities: enhancing a coherent policy for and through full participation”.
With an eye to securing progress in the full participation of persons with disabilities as
citizens, the ministerial conference decided to implement a European Action Plan geared to:
- combating all forms of discrimination in the human rights framework;
- promoting opportunities for persons with disabilities to lead an independent life;
- promoting quality services which are accessed via published eligibility criteria, based on
thorough and equitable assessment and shaped by people with disabilities person’s own
choices and degree of independence.
The Final Declaration of the Warsaw Summit of Heads of State and Government (2005) has a
similar thrust: “We are determined to build cohesive societies by ensuring fair access to
social rights, fighting exclusion and protecting vulnerable social groups. We acknowledge
the importance of the European Social Charter in this area and support current efforts to
increase its impact on the framing of our social policies. We are resolved to strengthen the
cohesion of our societies in its social, educational, health and cultural dimensions”.
The decision taken by the Ministers in Malaga in 2003 led to the adoption in April 2006 of
Committee of Ministers Recommendation Rec (2006) 5 and the Council of Europe “Action
Plan to promote the rights and full participation in society of people with disabilities:
improving the quality of life of people with disabilities in Europe 2006-2015”. In fact this
paper has been drawn up for the Conference to launch the Council of Europe Disability
Action Plan.
Lastly, the end of the year 2006 will see the presentation of the International Convention on
the Rights of Persons with Disabilities before the General Assembly of the United Nations,
before the initiation of the ratification procedure. It should be noted that the guidelines set
out in the Council of Europe’s Action Plan could be used to implement the various parts of
the future international convention.
This quick overview of the main stages in the standard-setting work on disability over the
last thirty years has highlighted the idea, which has grown up with the changing
conceptions and acceptations of the concepts of non-discrimination, equal opportunities and
self-reliance, that there is no person, whether disabled or not, who does not live in society.
This means that we no longer have “disabled persons” on the one hand and so-called
“normal people” on the other, but rather a set of citizens some of whom are in situations that
require special facilities to enable them to live in the community.
Nevertheless, as we all know, many social, economic, political and cultural rights are still
largely “inaccessible to many people with disabilities: the right to education; the right to
work; the right to private and family life; the right to protection of health and social security;
the right to protection against poverty and social exclusion; the right to adequate housing,
etc.”1
1
Recommendation 1592 (2003): Towards full social inclusion of people with disabilities.
152
In order to cope with this situation and secure practical progress, the Council of Europe is
promoting the implementation of an integrated political approach. Drawing on a set of four
principles, this approach is intended to transcend the duality which emerged in the 1990s
between the individual/medical model for disability and the social model, as shown in the
following diagram.
153
Medical/individual model for disability
Has lost the use of his/her limbs
Is deaf and/or blind
Is unable to learn
Is often in crisis
Is unable to work
Is withdrawn and aggressive
Cannot move around normally
Is in a wheelchair
The Person
with a
disability is
the problem
Needs constant assistance
Social model for disability
Transport inaccessible
Urban areas inaccessible
Education and discrimination
Isolated families
Low income/poverty
Few employment opportunities
Buildings unsuited to disability
Society is
the
problem
Many prejudices
Segregational attitudes
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The principle of justice primarily affirms that everyone is entitled to exploit his or her
potential to the full. The principle of non-discrimination recognises everyone’s right to
respect for what (s)he is, the right to live on an equal footing with other citizens. The
principle of diversity posits that the world belongs to all, not just to those who fit in with
some idea of perfection or normality. The independence principle states that persons in
situations of disability are entitled to be independent and take their own decisions.
Within this framework, an integrated social policy is underpinned by human rights as the
principle for action capable of configuring social reality. The social responses to situations of
disability must be based on dynamics which take account of interaction among a variety of
factors:
-
factors relating to the individual situation: capacity, degree of independence (technical
aids, individual adaptation to the living environment, housing, education, employment,
etc.);
-
environmental factors (accessibility, social participation, breaking down architectural,
social, economic and psychological barriers, etc.);
-
social factors (legislative, legal and statutory framework, reformulation of cultural
standards governing the organisation and functioning of so-called “ordinary”
environments, etc.).
Failure to take account of these interactions in assessing disability is liable to obscure the
main reasons for the lack of remedies for situations of disability.
The French Law of 11 February 2005: towards equality of opportunity, participation and citizenship
for persons with disabilities
Legislating on an integrated social policy
The Law of 11 February 2005 “towards equal rights and opportunities, participation and
citizenship for persons with disabilities” can be considered as the first piece of French
legislation aimed at individuals in situations of disability. This text, which was signed by
23 Ministers and comprises 101 Article and 8 Sections,1 establishes the means of coordination and implementation at the local, regional and national levels.
This Law, which targets access to the fundamental rights and is based on the general
principle of non-discrimination, centres on three main lines:
1. ensuring that persons with disabilities are free to choose their lifestyle thanks to
compensation for the consequences of their disability and an income conducive to an
independent and decent way of life;
1
Section I: General provisions; Section II: Prevention, research and access to treatment; Section III:
Compensation and resources; Section IV: Accessibility; Section V: Reception and information for disabled
persons, assessment of their needs and recognition of their rights; Section VI: Citizenship and participation in
community life; Sections VII and VIII: Miscellaneous and transitional provisions.
155
2. facilitating effective participation by disabled persons in community life by organising
the urban area around the principle of general accessibility, in terms of schools,
employment, transport, the architectural environment, culture and leisure;
3. placing the person with a disability at the centre of the relevant arrangements by
replacing the administrative approach with a service-oriented approach.
With an eye to establishing these three main lines of work, a consultation procedure has
been established at the national and local levels between the public authorities and civil
society. Furthermore, a three-yearly national conference on disability takes stock of current
progress and future action programmes.
The non-discrimination principle underpinning this Law requires the national community to
guarantee the conditions for equal rights1 for all citizens, and to systematically organise
access by persons with disabilities to the law, as adapted or complemented with specific
mechanisms to be provided under the terms of Article 15 of the Revised European Social
Charter.2 For instance, Article 2 guarantees persons with disabilities access to the
fundamental rights granted to all citizens, as well as the exercise of their full citizenship.
A definition of disability
As a tentative framework for implementing a new “right to compensation”, given that a
definition is only valid if its objectives are valid, the French Law defines disability as
follows:
For the purposes of the present Law, a disability is any limitation of activity or restriction of
participation in community life suffered by an individual in his or her environment because
of a substantial, durable or definitive deterioration in one or more physical, sensory, mental,
cognitive or psychic functions, a multiple handicap or a disabling health disorder.3
The compensation for the consequences of disability based on this definition involves
formulating a strategy to take account of the needs and aspirations of the person with
disabilities as expressed in his or her “life project”. This project can be formulated by the
persons concerned or, where they are unable to express their own opinions, with or for them
by their legal representative. The needs thus identified are assessed by a multidisciplinary
team.
General accessibility
Section IV develops a conception of accessibility that takes in a fair number of fields relevant
to the civic participation in community life of persons in situation of disability.
1
The authorities must guarantee equality of access to social rights, housing, schooling, education and training,
employment and civic rights with a view to granting full citizenship to persons with disabilities.
2
See 6th report on the application of the Council of Europe Revised European Social Charter, France, reference
period 2001-2004, March 2006, Council of Europe.
3
This definition is complex, seeking to incorporate the main elements of the International Classification of
Functioning, Disability and Health (WHO, 2001) while also expressing the French political option of
subscribing to the International Classification of Handicap (WHO, 1980).
156
The built environment
The aim here is to reinforce the accessibility of all buildings for all citizens.
“Architectural arrangements, fittings and internal and external amenities in housing
developments, whether privately or publicly owned, buildings open to the public,
installations open to the public and all workplaces must be accessible to all, particularly to
persons with disabilities, whether their disability is physical, sensory, cognitive, mental or
psychological”.
However, these provisions are not applicable to proprietors who are building or improving
housing for their own use.
The owners of buildings open to the public have ten years in which to bring them into line
with the accessibility regulations. Furthermore, the award of official subsidies is now subject
to the submission of an accessibility dossier.
Transport
As in the case of the “built environment”, the Law gives the parties concerned ten years in
which to adapt transport infrastructures. The transport chain, which comprises the built
environment, roadways, public areas, transport systems and transport intermodality, is
organised in such a way as to facilitate total accessibility for persons with disabilities or with
reduced mobility. However, in the transport field the general principle of accessibility to
underground railway networks is attenuated where it proves technically impossible to make
existing networks accessible. In such cases, means of transport suited to the needs of persons
with disabilities or with reduced mobility must be placed at their disposal. The cost of such
alternative transport for users with disabilities should not exceed the cost of existing public
transport.
As in the architectural field, public assistance is subject to consideration of accessibility.
The Law also stresses the accessibility of new equipment when is has to be renewed: Any
rolling stock purchased on renewal of equipment or extension of networks must be
accessible to persons with disabilities or reduced mobility.
Employment and adapted and sheltered work
The Law of 10 July 1987 promoting the employment of persons with disabilities introduced
a quota system to encourage their employment. This system is still used as the legislative
basis for employment. However, the amount of the contribution payable by enterprises that
fail to employ at least 6% of workers with disabilities has been increased to a maximum of
600 times the minimum hourly wage. In the same spirit, any enterprise which has failed to
recruit for three consecutive years has to pay a contribution of 1 500 times the minimum
hourly wage. However, the contribution is modulated on the basis of the principle of
“reasonable conversions” and several other criteria: employment subject to specific skills,
seriousness of the disability, maintenance in employment, adaptation of work station and
difficulties with access to employment.
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The various public functions (state, territorial and hospital) had not previously been covered
by the mandatory employment quotas applied to private enterprises. The Law remedies this
situation by creating a management fund on the model of that set up for enterprises
(1987 Law).
Adapted work
Sheltered workshops are now referred to as “adapted enterprises”, and are considered as
part of the normal working environment. The “Assistance-through-Work Centres” (“Centres
d’Aide par le Travail”), on the other hand, come under the medico-social sector.
Schooling and higher education
In order to fulfil its obligations, the public education service provides primary, secondary,
vocational and higher education for children, teenagers and adults in situations of disability
or a disabling health disorder. In order to promote equal opportunities, the appropriate
measures must be adopted to enable everyone, depending on his or her skills and specific
needs, to accede to the different types or levels of formal education.
Schooling
The Law stipulates that “All children are entitled to primary and secondary schooling”. This
statement is based on the idea that persons with disabilities cannot possibly become socially
integrated in the various areas of life if, as schoolchildren, they are assigned to specific
structures unlinked to the overall community.
The Law therefore complies with Article 15 (1) of the Revised European Social Charter in
reinforcing access to general schemes for education. As of 1 September 2006, any child or
teenager presenting a disability or a disabling health disorder must be registered with the
school closest to his or her place of residence. This school is henceforth the child’s reference
school. However, the children’s personal life projects may induce them subsequently to
register in a special school, in consultation with the public education department.
Civics education at primary and lower secondary school comprises courses on the problems
of and respect for persons with disability, and their social integration.
- Schooling for deaf youngsters
Where education and schooling for deaf youngsters is concerned, the Law stipulates that
they must have a free choice of bilingual communication in sign language and French.
- Teaching during a stay in an establishment
Teaching is also provided by qualified staff coming under the Ministry of Education where
the situation of the child or teenager with a disability or disabling health disorder
necessitates residence in a health or medico-social establishment.
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- Initial and further teacher training
During their initial and further training, teaching, support, reception, technical and service
staff receive specific training on provision for and education of disabled pupils and students,
comprising information on disability and the various forms of school support.
Higher education
Institutes of higher education must register students with disabilities or disabling health
disorders in the framework of the provisions governing their access on an equal footing with
other students, and provide them with training that may require adjustments in terms of
organisation, implementation and support, depending on the student’s specific situation.
The state may also recruit educational assistants to help, support and integrate students with
disabilities with an eye to a hands-on support system for disabled students registered in
institutes of higher education.
Reception and information, citizenship and community life: the substance of Sections V and
VI of the 11 February 2005 Law.
The participation of persons with disabilities in democratic life
If, for instance, voters with disabilities are to vote independently, whatever their disability,
polling stations and techniques must be accessible to people with disabilities, whether their
disability be physical, sensory, mental or psychological.
On-line public information services run by government departments, local and regional
authorities and their subsidiary public institutions will be made accessible to persons with
disabilities within a maximum of three years after adoption of the Law. This provision
relates to access by people with disabilities to all types of digital information whatever their
mode of access, the content and the mode of consultation.
Access to community life for deaf persons
The measures laid down in the Law include recognition of French sign language as a fullyfledged language. This means that all deaf pupils must have access to courses in French sign
language. This language can therefore be chosen as an optional test in ordinary and
competitive examinations, including those for vocational training.
All deaf people can choose the appropriate mode of communication when appearing in
administrative, civil or criminal courts. The costs arising out of this facility are defrayed by
the state.
Where circumstances so demand, visually impaired persons must be supplied with a
technical aid facilitating their access to the various parts of their case file, in accordance with
a statutory procedure. Similarly, aphasic persons can be accompanied in court by a person of
their choice or a professional, on the grounds of the communication problems caused by
their total or partial loss of speech.
In their relations with the public services, aurally impaired persons can request
simultaneous written or visual translation of any oral or sound information. The specific
159
communication arrangements must include written transcriptions, the involvement of a
French sign language interpreter, or any other appropriate mode of communication.
Lastly, all TV programmes whose average annual audience exceeds 2.5% of the total
audience figures for all TV programmes must be made accessible to persons with
disabilities. This obligation must be complied with within a maximum of five years after the
promulgation of the law, and applies to all programmes apart from commercials.
Arrangements are also made to enable aurally impaired persons to access emergence
telephone services.
In conclusion, where persons in situations of disability are concerned, human rights must be
considered as a principle for action capable of shaping social realities, rather than as an
ideological goal.
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Essential policy elements
Mr Andrey PANOV,
Deputy Director of the Department of Social Protection Development,
Ladies and gentlemen,
There are over 13 million disabled people in Russia today, i.e. some 9% of the population.
Under current legislation, a person is recognised as disabled (or, to use the more correct
term found in Council of Europe documents, as a “person with a disability”) if he/she has a
health impairment with a persistent functional disorder caused by disease, the aftermath of
an injury, or defects, and giving rise to a limitation on the person’s normal everyday
activities and a need for his/her social protection.
For some years now, the number of people with disabilities has been on the rise. The main
factors in this trend are:
–
–
–
–
–
–
–
economic and social underdevelopment in most of Russia’s regions, making for low
living standards and incomes;
the high incidence of disease and poor standards in treatment and prevention
institutions;
the lack of practical consideration given to all the factors that contribute to the limitation
of a person’s abilities by staff at socio-medical expert appraisal institutions;
environmental problems;
injuries at work and in everyday life;
road traffic accidents;
man-made and natural disasters and other causes.
It is worth noting that there is a perceptible link between the increase in the number of
people applying for the first time to be classified as having a disability and action to provide
social protection for various categories of people with disabilities and to improve the quality
of their lives.
In our view, the increase in the proportion of people with disabilities of pensionable age
from 51% of the total number in 2001 to nearly 70% at present cannot be attributed purely to
chance.
The issue of social support for people with disabilities receives constant attention from the
legislative and executive authorities at both federal and regional level.
Government policy in this area is founded on a sound legal base, the main pillar of which is
the law on “Social Protection for people with disabilities in the Russian Federation”. Current
legislation on people with disabilities includes a number of strands. It contains guarantees of
employment and occupational training, and stipulates that people with disabilities should
receive a decent education, health care, social and legal protection, integration and
rehabilitation, involvement in political, social and cultural life and access to information.
161
In its practical efforts to translate the guarantees enshrined in law into practice, the
government is focusing first and foremost on raising income levels among people with
disabilities and improving their standard of living. Decisions taken by government agencies
in recent years, and especially during 2004-2006, include an extensive range of measures to
improve the social status of people with disabilities.
At federal level, for example, pension provision is being upgraded, and invalidity pensions
are rising every year. Since 2001 the average invalidity pension has doubled. The task that
has been set is to get the minimum pension up to subsistence level as quickly as possible.
Since 2005, people with disabilities have been receiving monthly cash payments instead of
the non-cash benefits announced in the early 1990s, but only partially funded thereafter, and
these cash payments are annually indexed on an upward curve.
People with disabilities may, if they wish, use part of these monthly payments to purchase a
range of social services, including urgently needed medicines, some of which are costly,
treatment at a sanatorium or rest home, suburban rail travel, and also inter-city travel to and
from a place of treatment. Some indication of the scale of this aid is given by the fact that in
2006 some 400 000 people with disabilities have enjoyed services provided by sanatoria, and
a further 100 000 or more will have this opportunity by the end of the year.
One important area of the government’s social protection policy for people with disabilities
is provision of technical rehabilitation aids and prosthetic/orthopaedic equipment. In 2004,
the Russian Federation Government first ratified the Federal Schedule of rehabilitation
measures, technical rehabilitation equipment and services available to people with
disabilities, all of which is funded from the federal budget.
This Schedule has recently been significantly extended in response to suggestions from
disability NGOs, and this has enabled a much larger number of people with a range of
pathologies to undergo rehabilitation.
New types of rehabilitation devices meeting high international standards are being
developed and produced.
In the past five years, 167 000 people have been provided with means of transport out of the
federal budget. The situation, however, can hardly be described as satisfactory, as there are
145 000 people with disabilities in the Russian Federation who are still on the waiting list for
vehicles. We are currently looking at alternative ways of providing mobility for people with
impaired locomotor system function. A “social taxi” service is being developed to meet this
need, the production of electrically-powered wheelchairs is expanding, in some areas work
has begun to equip the city’s public transport with special devices, etc.
One thing that is of particular interest to government agencies is the creation of a system of
socio-medical expert appraisal to identify signs of disability. In placing the emphasis on
improving the quality of expert appraisal services, the Russian Federation Government has
carried out an overhaul of the socio-medical expert appraisal system, which is now funded
out of the federal budget. Since 1 January 2005, responsibility for the socio-medical expert
appraisal system has moved from regional to federal level. A three-pronged system of
federal state socio-medical expert appraisal institutions [MSEs] has been set up. There are
now 89 federal MSEs in operation in the Russian Federation, with 1 810 branches in the form
of socio-medical expert appraisal offices in towns and regions.
162
The activities of socio-medical expert appraisal institutions come under the direct
management of the Federal Agency for Health Care and Social Development, the Deputy
Director of which, Mr Lebedev, is taking part in this conference and will be happy to answer
any questions you may have in this connection.
The task of building up the human resources and facilities available to the expert medical
appraisal service therefore now falls to the federal authorities. Facilities at many sociomedical expert appraisal institutions have undergone a noticeable improvement, with the
acquisition of modern diagnostic equipment, computers and vehicles, enabling staff to travel
out to the most remote areas to make appraisals. A Federal Socio-Medical Expert Appraisal
Bureau has made its debut (and its director, Mr Puzin, is taking part in this conference).
The infrastructure of the federal socio-medical expert appraisal institutions is now meeting
public needs and helping to expand the range of measures that can be deployed to establish
disability and promote rehabilitation. Records for the first 6 months of this year show that
specialists have seen over 1 million people and that of these, some 80% have been classified
as disabled. In 20% of cases, preliminary steps taken have led to disability being averted.
Nowadays the great majority of citizens who are classified as having a disability for the first
time or who have undergone a repeat appraisal have individual rehabilitation programmes
drawn up, which include medical, occupational, socio-cultural and socio-domestic
rehabilitation measures. All of these measures are strictly tailored to the problems and needs
of the individual concerned. Implementation of the rehabilitation measures recommended
for people with disabilities is obligatory for treatment and prevention facilities, educational
institutions, social services, job centres and other agencies and institutions with a key role to
play in the rehabilitation process.
Government policy for people with disabilities is founded on the principle of social
partnership and social dialogue with disability organisations, with the aim of joining forces
to implement the social guarantees provided for people with disabilities, and encouraging
people with persistently impaired health to participate in social activity. Under current law,
disability organisations enjoy significant advantages, which enable them to pursue the aims
for which they were set up and to engage in a range of activities, including commercial ones,
to run their own businesses and rehabilitation institutions and to organise festivals,
competitions, fun days and sports events.
Specific legislation has introduced tax breaks and other incentives for disability
organisations. Under the Russian Federation Tax Code, for example, national disability
organisations are exempt from tax on any property used by them to carry on their statutory
activities, while organisations whose authorised capital consists entirely of contributions
from disability organisations are exempt from tax on any property used by them to
manufacture and/or sell goods, work and services. This exemption also applies to
institutions owned by disability organisations in respect of any property used by them to
pursue educational, cultural, treatment and health improvements, physical education and
sporting, scientific, information provision and other aims for the social protection and
rehabilitation of people with disabilities, or to provide legal or other assistance for adults
and children with disabilities and their parents.
Under federal laws introduced in 2005, ownership of the land on which buildings, edifices
and structures, whose sole founders were disability organisations, were sited was
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transferred to the national disability organisations. In addition, disability organisations were
allowed to make provision for future expenditure on social protection for people with
disabilities for a period of up to five years.
Starting this year, by order of the President of the Russian Federation, the federal budget
will be reimbursing the leading national disability organisations for all the expenses
incurred by businesses established by them in the form of tax on profits and insurance
premiums for compulsory pension insurance. The federal budget has set aside 500 million
roubles for this purpose in 2006 (roughly 15 million euros), while the draft budget for 2007
contains a provisional figure of 800 million roubles (or more than 23 million euros).
Besides what I have said already, I think it is important to note that current legislation
provides for a wide range of other social support measures for people with disabilities. For
example, people with disabilities are eligible for reductions of at least 50% on their rent (in
state-owned and municipal housing) and utility bills (regardless of the type of housing);
there are opportunities to study at special educational institutions of various types; people
with disabilities who have received their vehicles through welfare agencies are entitled to
50% off the compulsory vehicle insurance premium; additional accommodation is available
for people suffering from severe forms of chronic diseases included in the governmentapproved list, and so on.
The government supports the publication of dozens of newspapers and magazines for
people with disabilities, including some that are published in Braille. On the main federal
TV channels, open and closed captioning for people with hearing difficulties has been
introduced. The unique Theatre of Mime and Gesture was set up in Russia and has been
operating successfully for many years. Physical education and sport for people with
disabilities are developing, and the achievements of Russian sportsmen and sportswomen at
the World Paralympic Games are well known. They have won dozens of gold, silver and
bronze medals.
A major factor in implementing effective government policy to help people with disabilities
has been the targeted programme approach, as practised for the last fifteen years. The
federal targeted programme “Social support for people with disabilities for 2006-2010” is
currently under way and in the course of it, new buildings are to be commissioned for
sanatoria, occupational training institutions and rehabilitation centres for people with
disabilities, some this very year. Under the federal programme, new and efficient
technologies for medical, social and occupational rehabilitation are being developed and
approved, and model rehabilitation institutions are being created which will then be
replicated nationwide.
It is anticipated that the programme will pave the way for a reduction in the number of
people with disabilities and will enable up to 150 000-160 000 a year to resume independent
occupational, social and everyday activities. Over the 5 years, this will amount to some
800 000 people (about 29 000 of whom became disabled as a result of military action and
injuries sustained in warfare). Under the federal targeted programmes to provide social
support for people with disabilities introduced since 1995, more than 773 000 people
formerly classified as disabled have regained their capacity to work and to perform normal,
everyday activities.
Since 1991, an independent scheme entitled “Children with disabilities” has been operating
under the umbrella of the federal “Children of Russia” programme, and this has enabled a
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network of rehabilitation institutions of a kind previously unknown in Russia to be set up,
new-generation technical rehabilitation equipment to be developed, methodological
principles for rehabilitation work to be established and staff for rehabilitation centres to be
trained.
The government has come up with substantial funds to implement these programmes, and
is continuing to do so.
It should be pointed out that direct spending from the federal budget on addressing the
problems of people with disabilities is rising year on year. In 2005, 152.3 billion roubles was
set aside for this purpose (about 4.6 billion euros), and in 2006 the figure is 177.6 billion
roubles (over 5 billion euros). If all types of federal budget spending in this area are
considered, including monthly cash payments, the total comes to over 400 billion roubles
(12 billion euros). At least 120 billion roubles (about 3 billion euros) is to be used to fund
institutions providing social services for people with disabilities and the elderly and other
social support measures for people with disabilities from sub-federal budgets.
On average, the annual direct spend from the federal budget per person with a disability
(leaving aside pensions and compensation payments) has risen from 1 741 roubles in 2001
(about 50 euros) to 13 700 roubles (400 euros) in 2006, i.e. a near eightfold increase. A
significant rise in equivalent expenditure is also planned for 2007.
Significant efforts to rehabilitate people with disabilities and improve their status are being
made at regional level. In a number of Russian Federation constituent entities regional social
support programmes have been adopted, which include measures to help people with
disabilities. In one in three of these subjects, a targeted programme of social support and
rehabilitation for people with disabilities is being put into effect. Priority areas in social
support and rehabilitation under these programmes are creation of new jobs for people with
disabilities, development of the social services infrastructure for rehabilitation, creation of an
accessible living environment and support for social programmes run by disability
organisations.
Government agencies in Russian Federation subjects have set up more than
220 rehabilitation centres for young and elderly people with disabilities, and over
300 rehabilitation centres for children with disabilities. There are 296 child disability
rehabilitation departments operating at family and child welfare centres and residential
homes for children, and over 700 social rehabilitation departments for young and elderly
people with disabilities at social service centres. These social services deliver a wide range of
socio-pedagogical, psychological, socio-legal, counselling and other services for the
rehabilitation of people with disabilities.
Most government agencies in the Russian Federation subjects are acting on the right that has
been conferred on them to set a quota for the employment of people with disabilities in
organisations with a workforce of over 100. With the help of job centres, about 45% of
persons with disabilities applying for work have found jobs.
It is very important to create a living environment that is accessible to people with
disabilities. At federal, regional and municipal levels, steps are being taken to equip
residential and administrative buildings, pedestrian crossings, public transport, medical
institutions, educational institutions, commercial businesses, hotels, railway stations,
airports, banks, post offices, museums, exhibition centres and sports facilities with special
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structures and devices to make life easier for people with disabilities. A barrier-free living
environment is thus gradually being established for people with disabilities, and their right
to a full life in society, to work, education and active leisure is thus becoming a reality.
It is important to point out that the business sector is also addressing this task, one example
being the targeted work carried out by Moscow Railways. The latter has used money from
its budget to purchase wheelchairs for each of the capital’s seven main railway stations, and
these may be used free-of-charge by passengers with disabilities. All city stations are
equipped with ramps and special devices, with the result that stairs are no longer an
obstacle to people in wheelchairs. At the Yaroslavskiy and Paveletskiy stations, people with
disabilities can now ride up to the first floor by escalator together with those accompanying
them.
The long-distance trains that serve the capital have recently had special carriages for people
with disabilities added to them. These trains contain lifts for people in wheelchairs, wide
corridors, special compartments and toilets.
Clearly, not all of the problems involved in providing people with disabilities with a proper
level of income and decent living standards have been solved as yet. Government agencies
need to make a major effort, including as regards funding. Suffice it to say that only a small
number of people with disabilities of working age have been enabled to find employment.
Access to some social services has not been provided, especially for people with disabilities
living below the poverty line. Not all technical rehabilitation equipment that is so vital to
certain groups of people with disabilities has made it onto the federal schedule. The network
of functioning rehabilitation institutions is insufficient to meet demand. Most facilities in the
social infrastructure are not fully fitted out for use by people with disabilities. And these are
only a few of the problems we need to address over the next few years.
Fortunately, there is now a new guide to help the Russian Federation, and other Council of
Europe member states, to check that they are headed in the right direction – in the shape of
the Council of Europe Action Plan to promote the rights and full participation of people
with disabilities in society for the period 2006-2015.
As our Minister, Mikhail Zourabov, stated this morning, the Russian Federation, as a
member of the Council of Europe, will most certainly be taking an active part in
implementing the Action Plan recommended by this leading European organisation, and
will be taking fresh steps to improve the quality of life for people with disabilities, to secure
their fullest possible integration into society and to enable them to lead independent lives. In
our policy, legislation and practice, we intend to adhere to the principles and approaches set
out in the Council of Europe Action Plan to promote the rights and full participation of
people with disabilities in society.
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Role of NGOs and social partnership in the field of integration of people with disabilities
Mr Pekka TUOMINEN
President of the Finnish Association of People with
Mobility Disabilities
Board and Executive Committee member of EDF
Abstract
The topic on which I have been asked to speak is a very wide one and can be approached
from many different angles.
I will approach it from the point of view of what I consider the most relevant role of
representative disability - NGOs: the role of advocacy and policy promotion.
Rule 18 of the United Nations Standard Rules, the forthcoming Convention on the Rights of
Persons with Disabilities, the Council of Europe Action Plan, all recognise the role of
representative organisations of persons with disabilities. “Nothing about us without us” is
the slogan of EDF and has been the slogan of the worldwide disability movement during the
negotiations on the United Nations Convention.
While many disability NGOs provide services to their members, the main role of a
representative disability organisation should be to promote and protect the rights and
interests of its members. While many organisations provide services and do advocacy work,
it is important to distinguish clearly both activities.
Within this objective, the establishment of umbrella organisations at national and
international level play a fundamental role. Umbrella organisations, according to our
terminology, are organisations bringing together the different impairment specific
organisations in order to ensure a unified platform and voice of persons with disabilities.
The main objective of such an umbrella organisation should be the promotion and
implementation of legislation and policies which will ensure the full participation of people
with disabilities in society.
Disability NGOs need to be able not only to criticise the discrimination and other problems
faced by persons with disabilities, but also to propose solutions on how to address these
problems
Obviously, this will need to be done through their proactive work with public authorities at
all levels of decision-making.
It is vital to ensure a structured relationship between public authorities and disability
organisations. The way this relationship is organised may vary from one country to another,
but there are a number of elements that need to be taken into account.
The consultation and involvement of disability NGOs needs to take place in all relevant
areas. The Action Plan rightly refers to mainstreaming and sector responsibility.
167
The consultation needs to be at an early stage of the development of a policy or legislation in
order to be meaningful. Sufficient time needs to be given to disability organisations, in order
to consult with their membership.
One of the key messages the EDF is sending to national authorities is the need to provide
basic funding for national umbrella organisations and representative national disability
organisations to be able to undertake their vital advocacy work in an independent way. We
consider this as a necessary precondition without which the consultation and involvement
of disability NGOs will not be meaningful.
Finally, disability NGOs need not only to be partners to public authorities. They also need to
be in contact and influence all other stakeholders in society: employers, trade unions, media,
and civil society organisations, among others. All stakeholders in society need to make their
contribution and disabled people need to be visible in all areas.
Presentation
The topic on which I have been asked to speak is a very wide one and can be approached
from many different angles.
I will approach it from the point of view of what I consider the most relevant role of
representative disability NGOs: the role of advocacy and policy promotion.
Rule 18 of the United Nations Standard Rules, the forthcoming Convention on the Rights of
Persons with Disabilities, the Council of Europe Action Plan, all recognise the role of
representative organisations of persons with disabilities. “Nothing about us without us” is
the slogan of EDF and has been the slogan of the worldwide disability movement during the
negotiations on the United Nations Convention.
While many disability NGOs provide services to their members, the main role of a
representative disability organisation should be to promote and protect the rights and
interests of its members.
While many organisations provide services and do advocacy work, it is important to
distinguish clearly both activities. Thus, service provision implies a specific relationship
between public authorities (which provide the funding) and the service providing
organisation, which is obtaining funding to deliver a service to persons with disabilities on
behalf of the state.
The relationship between an advocacy (or policy promoting) organisation and public
authority is fundamentally different and this needs to be understood both by public
authorities and by disability organisations. Only independent and, when needed, critical
disability organisations will really ensure that disability policies are progressing.
Within this objective, the establishment of umbrella organisations at national and
international level play a fundamental role. Umbrella organisations, according to our
terminology, are organisations bringing together the different impairment specific
organisations in order to ensure a unified platform and voice of persons with disabilities.
168
The main objective of such an umbrella organisation should be the promotion and
implementation of legislation and policies which will ensure the full participation of people
with disabilities in society.
Disability NGOs need to be able not only to criticise the discrimination and other problems
faced by persons with disabilities, but also to propose solutions on how to address these
problems
The negotiation process to arrive at the Convention on the Rights of Persons with
Disabilities is a good example of involvement of disability NGOs. The representative NGOs
of persons with disabilities established the so-called International Disability Caucus (IDC),
which became the unified voice of the disability movement, under the leadership of people
with disabilities People’s Organisations (DPOs). Other NGOs were also part of the IDC, but
they had to accept the leadership role of the DPOs.
The efforts made by the disability organisations to speak with one voice and the status and
respect granted to the IDC by the governments in the Ad Hoc Committee are an example of
good practice, which has led to a convention which, while not including all the demands
from the disability movement, is a convention which is supported by the disability
community.
It is clear that the times have passed when disability policies were being designed without
the involvement of persons with disabilities through their representative organisations.
Obviously, this will need to be done through their proactive work with public authorities at
all levels of decision-making.
It is vital to ensure a structured relationship between public authorities and disability
organisations. The way this relationship is organised may vary from one country to another,
but there are a number of elements that need to be taken into account.
The consultation and involvement of disability NGOs needs to take place in all relevant
areas. The Action Plan rightly refers to mainstreaming and sector responsibility.
The consultation needs to be at an early stage of the development of a policy or legislation in
order to be meaningful. Sufficient time needs to be given to disability organisations, in order
to consult with their membership.
It is also important that governments respect and encourage the efforts made by disability
organisations to establish a national umbrella organisation. This umbrella organisation has
to become the main partner for governments on policies affecting persons with disabilities.
Moreover, public authorities need to differentiate between representative organisations of
persons with disabilities and other organisations working in the field of disability (for
instance, service providers). Preference needs to be given to representative organisations of
It is also important that a clear distinction is made between national umbrella organisations
and government appointed national councils, which bring together government
representatives and representatives from disability organisations. While these national
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councils can play a useful role providing a place for structured and co-ordinated exchange
of information, they can in no way replace the role of an umbrella organisation.
One of the key messages the EDF is sending to national authorities is the need to provide
basic funding for national umbrella organisations and representative national disability
organisations to be able to undertake their vital advocacy work in an independent way. We
consider this as a necessary precondition without which the consultation and involvement
of disability NGOs will not be meaningful.
I have been personally involved in the efforts the European Disability Forum is undertaking
to strengthen the capacity of disability organisations in the Western Balkans.
Finally, disability NGOs need not only to be partners to public authorities. They also need to
be in contact and influence all other stakeholders in society: employers, trade unions, media,
and civil society organisations, among others. All stakeholders in society need to make their
contribution and people with disabilities need to be visible in all areas.
This was one of the main messages from the Madrid Declaration adopted in 2002, which was
inspiring to all the activities undertaken in 2003, the European Year of People with
Disabilities.
The new Council of Europe Action Plan and the forthcoming Convention on the Rights of
Persons with Disabilities will require an even stronger partnership between public
authorities and disability organisations in order to ensure their effective implementation.
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CONCLUSIONS OF WORKSHOP 3
ROLE OF PUBLIC AUTHORITIES IN PROMOTING EQUAL OPPORTUNITIES
AND FULL PARTICIPATION OF PEOPLE WITH DISABILITIES
Chair:
Ms Liubovi GLEBOVA
State Secretary
Deputy Minister of Health and Social Development
Russian Federation
First Vice-Chair:
Ms Terttu SAVOLAINEN
State Secretary
Ministry of Social Affairs and Health
Finland
Second Vice-Chair:
Ms Liudmilla KOSTKINA
Rapporteur:
Mr Andrey PANOV
Deputy Director of the Department of Social Protection Development
Ministry of Health and Social Development
Russian Federation
Participants attending Workshop 3 recommended that:
The state authorities must provide people with disabilities with the necessary conditions for
their equal participation in life in society. The domestic legislation of Council of Europe
member states should prohibit discrimination against people with disabilities and guarantee
them the full spectrum of political, social, economic, cultural an civil rights enjoyed by all
members of society. We recommend that steps be taken to secure – at national, regional and
local levels – interaction between all branches of authority and state administration
structures in the different spheres, their social partnership and ongoing dialogue with NGOs
with a view to improving the standard and quality of life of people with disabilities,
integrating them in social, working and everyday life and giving them access to the social,
information and production infrastructure.
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PLENARY SESSION II:
NATIONAL EXPERIENCES IN IMPROVING THE QUALITY OF
LIFE OF PEOPLE WITH DISABILITIES
Social protection of people with disabilities in St Petersburg: current situation and
outlook
Mrs Galina KOLOSOVA,
Vice-Chair of the Committee on Employment and Social Protection of
citizens of St Petersburg, Russian Federation
I would like to outline for you the main social policy plans in St Petersburg for people with
disabilities: this will cover our experience to date, a description of the problems we face and
prospects for the future.
The 1995 Russian Federation law “On Social Protection for People with Disabilities in the
Russian Federation” established the priority for state social policy in respect of people with
disabilities – namely the implementation of a set of economic and legal measures, along with
social support measures, to ensure that existing restrictions on their normal everyday
activities are overcome, alleviated or compensated for, and to see that opportunities to
participate in social activity on a par with other citizens are created for them too. These
measures are being put into effect at both federal and sub-federal level.
The Government of St Petersburg is implementing state policy on social support for people
with disabilities through the following range of measures:
-
adopting and implementing in St Petersburg regulatory legal instruments (St Petersburg
bye-laws, resolutions of the St Petersburg Government, and orders of various kinds
issued by executive authorities for particular sectors);
-
participating in the implementation of federal targeted programmes and adopting and
implementing regional targeted programmes and support packages for people with
disabilities, including children with disabilities and families with disabled members,
paid for out of the St Petersburg city funds;
-
setting up and funding state social and rehabilitation institutions providing suitable
services to people with disabilities and members of their families; monitoring citizens’
needs, and also monitoring the development of institutions and services;
-
developing the required methodological material; analysing and disseminating good
practice; coordinating and financing scientific research; training staff for administrative
agencies and institutions operating in the field;
-
assisting the work of and providing state support to organisations for people with
disabilities and any businesses they may set up.
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The setting of priorities in the execution of social policy for people with disabilities in
St Petersburg takes place in line with current international instruments and Russian
Federation legislation, with due regard for socio-economic indices and the particular
features of the demographic situation in the city.
St Petersburg is currently home to 4 580 000 people; almost one third of them (29%), or
1 375 000 citizens, are of pensionable age, and 13.5% (over 620 000) are under the age of 18.
People with disabilities make up almost 16% of the city’s total population. Of all the people
with disabilities (733 300 individuals) living in St Petersburg, over 80% (80.2%, or 588 500
people) are citizens of pensionable age, a little over 17.5% (128 500) are citizens of working
age and 2.2% (16 200) are children with disabilities.
The main forms of social support for people with disabilities are:
1. Material support – money payments (material assistance, benefits, compensation – over
and above the pension provision set at federal level and monthly cash payments in place
of the welfare benefits previously available). In St Petersburg compensation is payable
for special transport equipment as a rehabilitation aid; payments are made to families
with an income below subsistence level, there is material support for families with
children, including children with disabilities and people who have had disabilities since
childhood, and there is also support for persons whose living conditions are difficult.
2. Support in kind (basic necessities, including foodstuffs, clothing, medicines and items
for medical use; technical equipment for domestic, sporting, cultural, information and
production purposes); a social housing development programme is being put into effect
in St Petersburg; housing is offered to needy citizens in social housing apartments, hotels
and houses used for social purposes.
3. Social services (medical and prosthetic/orthopaedic aid; upbringing and education of
children with disabilities; occupational training and job placement – finding them work;
medical and social assistance and care; domestic services; social and psychological help
and support; organisation of recuperative measures and recreation for people with
disabilities and their families); a “social taxi” service is currently being set up in the city,
which will provide special transport for people with severe mobility problems.
4. Legal protection for people with disabilities (ensuring basic rights and freedoms and
protecting the legal interests of people with disabilities), and provision of additional
guarantees and benefits. Money from the St Petersburg city budget goes to provide free
travel on city transport for certain categories of people with disabilities, including
children with disabilities and those accompanying them; money is also being made
available to set up and modernise workplaces to give people with disabilities
employment; and material support is made available to disability organisations, in the
form of grants for their core activities and support for their members.
The St Petersburg Government is pursuing an active policy in addressing the question of
providing an accessible living environment for people with disabilities, and in providing
them with unhindered access to social infrastructure facilities and information; one way in
which this is being done is by implementing targeted and special-purpose programmes in
this area. A computerised information referral system for planning and monitoring
accessible living environments for people with disabilities is currently being set up in the
city: the results of inspections of facilities will be entered in the system, to be used later
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when carrying out work to improve access for people with disabilities. The regional social
programme “Accessible living environments for people with disabilities” is being put into
effect in St Petersburg, and this has provided a regulatory and legal framework for
developing and ensuring a hindrance-free living environment for people with disabilities,
along with a procedure for inspecting social infrastructure facilities if there is a need for
them to be refitted or equipped with means to ensure unhindered access for people with
disabilities, including through the adoption and implementation of relevant special-purpose
programmes at administrative district level.
In order to ensure proper organisation and delivery of essential social support for people
with disabilities, taking into account their individual needs, citizens are being certificated at
socio-medical expert appraisal institutions (MSEs), to establish the degree of functional
impairment and restriction of normal everyday activities, and also to establish what specific
social welfare and rehabilitation measures are required.
The MSE certification results are entered in the Unified Social Register of the Population of
St Petersburg. This is a common database of persons in need of social support, showing their
specific needs, the services provided and the types of aid.
Each year in St Petersburg at socio-medical expert appraisal institutions more than 55 000
people are recognised as having a disability, almost one third of whom (29.6%) are citizens
of working age, and some 1 600 of whom, or less than 3% (2.9%), are children, if we consider
the total number of classified as disabled for the first time. Indicators of primary disability
among citizens of pensionable age are on the rise.
Under the classification system that has been adopted in Russia, taking all people with
disabilities over the age of 18, the vast majority are persons with marked or very marked
functional impairment and restriction of normal everyday activities that require a wide
range of social support measures. People with Group I disabilities account for 8% of the
total, Group II for almost 80% and Group III for about 12%. A fifth of them (22%) have been
diagnosed as being completely incapable of working (level 3 restriction of capacity to work).
12.5% may work under normal production conditions with some restrictions (level 1), and
63% have been classified as having level 2 restriction of capacity to work, which means there
is potential to work only in special conditions, or conditions tailored to individual needs, or
at home.
Persons who have been declared disabled have an Individual Rehabilitation Programme
(IRP) worked out for them. This states the rehabilitation services that the person with
disabilities person requires and the means of medical, occupational, social and
psychological/educational rehabilitation, including technical equipment for medical
rehabilitation, for occupational training or work, and for domestic and social activities
(including help with getting about, looking after oneself and communication).
During the period from 2005 to the first half of 2006, more than 230 000 individual
rehabilitation programmes for people with disabilities were produced at socio-medical
expert appraisal institutions in St Petersburg. Experience of working with rehabilitation
programmes has shown, however, that people have little incentive to obtain real
rehabilitation benefits (reduction in the severity or elimination of their disability), resulting
in poor take-up of the IRP scheme (only about 40% of persons with disabilities). There are
currently more than 127 000 people with disabilities on the books of welfare agencies who
are receiving help under individual rehabilitation programmes. Almost half of these (over
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60 000 people) are being provided with technical equipment for rehabilitation and
prosthetic/orthopaedic aids, while over 111 500 people with disabilities are benefiting from
a range of other rehabilitation and social support measures.
Rehabilitation for people with disabilities, co-ordination of the activities of those
implementing the programmes and essential assistance for people with disabilities in
putting an IRP into effect are carried out in St Petersburg by management agencies in the
social welfare system.
All district welfare departments employ specialists who are responsible for organising the
execution of IRPs in that district. In terms of organisation and methodology, responsibility
for managing rehabilitation in welfare departments falls to the relevant sub-division of the
Labour and Social Protection Committee.
With a view to organising effective interaction between state authorities in St Petersburg,
state institutions, NGOs and other organisations in the city, to provide organisational and
methodological support for the system of rehabilitation for people with disabilities, the
Labour and Social Protection Committee has set up a Methods Council for the rehabilitation
of people with disabilities, with three permanent working groups:
-
to co-ordinate the activities of rehabilitation institutions;
to organise the activities of district welfare departments (territorial management
agencies in the social welfare system);
and also an Inter-Departmental Commission to co-ordinate activities in the sphere of
rehabilitation.
IRPs are executed by institutions and organisations affiliated to a range of government
departments and with various types of status.
People with disabilities receive a significant proportion of the medical rehabilitation
provided at central out-patient clinics, city and district consultative and diagnostic centres,
specialist departments at city hospitals, clinics attached to medical institutes of higher
education and research institutes, and also at home. Recuperation and rehabilitation for
children with disabilities are provided at two city-administered centres and five districtadministered centres; 27 rehabilitation departments of various types operate at children’s
clinics.
Education for children with disabilities is provided at both special and mainstream
educational institutions, where psychological/pedagogical and medico-social support and
special learning conditions can be provided if required. St Petersburg has a network of
special needs education institutions: 58 schools and boarding-schools and 362 pre-school
educational institutions for children with speech, visual, hearing, motor or intellectual
impairment, or with retarded mental development or severe central nervous system
disorders. Their activities are geared towards delivering education programmes and
creating the necessary conditions for corrective and developmental education, and towards
addressing the issue of social and occupational adaptation among pupils and enabling them
to lead independent lives.
Occupational rehabilitation takes place through training at institutions for primary,
secondary and higher vocational education (mainstream and specialised), and by helping
people to find work through employment service offices, including specialised offices. A
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quota system of workplaces for the employment of people with disabilities is in operation at
businesses in the city, under a bye-law. Data for 2005 show that businesses allocated a quota
of over 16 000 workplaces, of which roughly 1 000 comprised a vacancies bank; some 10 000
people with disabilities applied to the employment service for information and help in
finding work, and of these one third were placed and over half were granted unemployed
status, the appropriate benefits and other types of assistance by the employment service,
with some being referred for training.
St Petersburg has specialised occupational training centres that fall under the Labour and
Social Protection Committee, to train people with various types of disability:
1. “The occupational rehabilitation college” – set up in 1943. The college trains people with
Group II and III disabilities aged between 16 and 40. The training lasts from one to two
years. Training is provided in 11 specialist subjects and occupations using basic vocational
education programmes, including sewing, shoe-making, typing, machine knitting and
information technology.
The total number of people studying at the college is 395, more than 100 of whom are
studying at a branch of the college in the G.A. Albrecht Federal Scientific and Practical
Centre for Expert Appraisal, Prosthetics and Rehabilitation. Every year between 175 and 190
people graduate from this college, and over 50% find work in their specialist field, with a
further 10-15% of graduates going on to work from home.
2. “The occupational rehabilitation centre”. This centre was the venue for a meeting held
yesterday as part of the conference. It was set up in February 1996 as part of an international
social project involving the German Federal Ministry of Labour and Social Affairs, the
Russian Federation Ministry of Labour and Social Development and St Petersburg City
Authority, drawing on 25 years of experience at a similar centre in Frankfurt-am-Main.
The Occupational Rehabilitation Centre (ORC) trains people with disabilities aged from
18 to 45; primary and secondary vocational education curricula are taught, as well as
supplementary education. Since the ORC opened, over 1 200 people with disabilities have
passed through its doors, with a 65% employment rate. This is aided by the active cooperation between the centre and the employment service and the job fairs for people with
disabilities that have been held there every year since 1997.
The city is also home to the “Centre for Socio-Medical Rehabilitation of the Visually
Impaired”, which, in addition to basic rehabilitation tasks, is also involved in preoccupational training for people with visual impairment (mainly people who were afflicted
by blindness later in life). A training course at the centre lasts two and a half months.
The centre offers comprehensive rehabilitation programmes for the visually impaired, with
the ultimate aim of integrating people with severe visual impairment and blindness into
society. The centre takes in people with Group I and Group II visual disabilities, both on a
residential and non-residential basis.
Measures of a social nature are mainly put into effect at social rehabilitation departments
and centres in the public welfare system. In order to provide social and rehabilitation
services, a network of social welfare institutions has been set up in St Petersburg, operating
at two levels: city and district.
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Among the city institutions reporting to the St Petersburg Labour and Social Protection
Committee are 12 residential social service institutions: 8 neuropsychology in-patient
centres, and 4 children’s homes. At present these house 7 230 people (6 085 adults and
1 145 children), who require constant assistance, care or supervision.
At these institutions, residents are provided with the necessary socio-medical, psychological,
socio-pedagogical and rehabilitation assistance. There are therapeutic workshops, and
rehabilitation centres are being developed.
For example, at neuropsychology in-patient centre No. 10, a rehabilitation centre has been
operating for the past 15 years, with classes in occupational training and social adaptation
for young people with congenital mental retardation aged between 16 and 40, to develop
their compensatory and adaptive abilities. The centre also organises sporting, recuperative
and cultural activities.
This centre has a branch located in the village of Shapki, in the Leningrad oblast, known as
the “Social Centre for the Rehabilitation of Children with Disabilities”. Here, young people
with disabilities learn how to lead independent lives, partly under a Finno-Russian project;
work-based activities are organised, and there are social and recreational opportunities and
recuperative rest for children with disabilities and people who have had disabilities since
childhood.
Work is currently under way to build a rehabilitation centre at the Home for Children with
Mental Development Problems No. 1. Once completed, the centre will have a residential unit
for 100 people, a manufacturing unit with 150 workplaces of which 50 will be for people
with disabilities who live with families, and a recreational and recuperation unit with a
cinema/concert hall and a sports hall. The main tasks for the centre are as follows: to
develop and trial new technologies; and to implement individual rehabilitation programmes
for people with disabilities. The children’s home is already, however, implementing a series
of medical, pedagogical and occupational rehabilitation programmes (with career guidance
and occupational training, and provision of sheltered workplaces), and measures to facilitate
social adaptation and prepare young people for independent living, including the opening
of an apartment-hotel for training purposes.
The 20 September 2006 saw the opening of the City Centre for Social Rehabilitation of People
with Disabilities in the town of Pushkin, where the present conference is being held. This
centre will see the implementation of a number of measures aimed at social rehabilitation on
a non-residential (up to 100 visits per day) and residential basis (we have 84 beds). The
centre will provide rehabilitation assistance under individual rehabilitation programmes for
people with disabilities: socio-psychological, domestic (with training in the main social
skills: looking after oneself, living independently); occupational rehabilitation measures
(career guidance, occupational therapy, basic occupational training); and socio-cultural and
sports and recuperative activities. To do this, the centre is equipped with modern sports and
gym facilities, a swimming-pool, a cinema and concert hall, and a specialist department for
residential social rehabilitation with training apartments to teach people with disabilities to
lead as independent a life as possible.
This facility is also set to become the methodology centre for the city in terms of the
development and introduction of the latest socio-rehabilitation technologies, new forms and
methods of working and specialist training.
178
In St Petersburg we are particularly interested in providing rehabilitation assistance for
children with disabilities. As part of a comprehensive approach to the problems of children
with disabilities, over the period 1998-2003 regional targeted medical and social
programmes under the title “Deti-invalidy” [children with disabilities] were framed and
implemented, and since 2004 we have had the inter-departmental Packages of measures to
support children with Disabilities and their Families, involving the Labour and Social
Protection Committee, the Health Committee, the Education Committee and the
St Petersburg district authorities.
As part of these programmes and plans for children living in institutions, measures are
being introduced to improve their living conditions and the socio-medical service they
receive in the institutions (equipment is being purchased, training classes started, and new
rehabilitation methods introduced: equine therapy, psychological assistance, art therapy,
sport, and there has been an increase in the number of production workshops), and an
“open door” policy is also in operation: the children are regular guests at events in the city,
and the children’s homes increasingly serve as venues for various tournaments and festivals
that draw in large numbers of visitors. People leaving residential institutions who are
capable of leading independent lives are provided with municipal housing and jobs in the
city.
Work is under way to organise assistance for children living in families, by developing
rehabilitation institutions and departments in every district of the city.
There are currently four social rehabilitation centres for children with disabilities operating
as legal entities, and in twelve of the city’s districts there are rehabilitation departments
attached to state-funded institutions known as “Comprehensive Social Services Centres”.
The following types of rehabilitation service are offered at social rehabilitation centres and
departments.
1. Social rehabilitation proper, including:
1.1. socio-domestic adaptation: cultivating and restoring key life skills, including personal
care (personal hygiene, nutrition), independent living skills (cooking, care of bed linen and
clothing, cleaning and tidying, use of domestic appliances);
1.2. socio-environmental orientation: cultivating and restoring social skills (contact with
people: family members, friends, strangers, knowledge of services and people that may be
approached for help, going shopping, going to the theatre, ability to handle money),
personal survival skills at home and out of doors; legal advice for families with children
with disabilities;
1.3. training in the use of technical rehabilitation devices and prosthetic/orthopaedic
equipment;
1.4. counselling concerning local access and adaptation of the home, place of study and
workplace; selection and adaptation of auxiliary devices and special equipment;
1.5. socio-cultural rehabilitation (isotherapy, music therapy, play therapy, other types of
occupational and leisure therapy).
2. As part of social and rehabilitation services, certain measures in the occupational
rehabilitation (social and work) category are provided at departments and centres, specifically:
- career guidance in the form of aptitude tests, occupational information, counselling and
recruitment;
- primary development of occupational skills and pre-occupational training;
179
-
interaction with vocational education institutions, businesses and district employment
services – to sort out occupational training and job-seeking for adolescents with
disabilities.
3. Children with disabilities and members of their families, in particular parents, are
provided with psychological rehabilitation services, including psychological diagnosis,
counselling, corrective psychological measures and psychological training.
4. Adaptive physical education measures (physical education and sport for people with
disabilities) which are aimed at forming and improving physical, mental, functional and
volitional qualities and abilities in people with disabilities. These measures include: adaptive
physical education; motor recreation; sports events. Sports halls and gyms are being
installed at centres and departments to enable this work to be carried out, and visits to
swimming-pools are organised. Targeted programmes include the establishment of an
adaptive physical education and sports service for children with disabilities and people with
health problems. Innovative social services models have been created: supported living
services (including training apartments), home visits and home helps.
To provide services for the elderly and people with disabilities, as part of the social welfare
service there are 20 state-funded institutions operating in 18 of St Petersburg’s urban
districts under the heading “Comprehensive Social Services Centre”. These centres
incorporate almost 450 departments that provide social services, including specialised
home-based socio-medical services, socio-rehabilitation aid, information, advice and
counselling and other types of help.
In St Petersburg there is constructive and practical co-operation between state authorities
and the leading organisations for people with disabilities: regional branches of the AllRussian Society for the Blind, the All-Russian Society for the Deaf, the All-Russian Society
for People with Disabilities, organisations for parents of children with disabilities and many
more.
The state authorities in St Petersburg have put in place an effective legislative framework to
ensure state support for disability organisations. All public initiatives designed to help
people with disabilities are considered and discussed, in particular those aimed at creating a
system of favourable economic treatment for disability organisations, businesses which
provide jobs for people with disabilities and rehabilitation institutions. Every year attention
is given to matters concerning the exemption of disability organisations from payment of
rent for use of non-residential facilities and payment of their utility bills. Funds from the
St Petersburg city budget are used to provide grant aid for the statutory activities of
disability organisations and social support for their members; money is made available
every year for the creation and modernisation of special workplaces to provide jobs for
There is a Co-ordinating Council on Disability Issues reporting to the Governor of
St Petersburg which includes representatives of the main disability organisations in the city,
members of the Legislative Assembly and representatives of city committees for specific
industries. Participants at Council meetings discuss matters of relevance to people with
disabilities, and co-ordinate and approve steps taken by the Government of St Petersburg to
address the problems facing people with disabilities.
180
A Resolution (No. 559 of 16.05.2006) has been adopted by the Government of St Petersburg
and the “Blueprint for the Development of a Social Welfare System for St Petersburg for
2006-2010” is being implemented.
The main aim in developing the city’s welfare system is to meet citizens’ need for quality
social services (bearing in mind the projected socio-economic development of St Petersburg).
To this end, the following tasks have been formulated, and will be addressed in due course:
-
upgrading the city’s social welfare legislation;
creating a system of standards, regulations and social service norms for the city;
developing a system of social services institutions;
introducing machinery to govern the activities of social services, whatever their legal
status;
improving co-operation between the relevant parties (governmental and nongovernmental organisations) in St Petersburg’s social welfare system;
organising information support for the city’s state authorities in the social welfare
sphere.
Implementation of the blueprint will enable a social welfare and social support system to be
developed in St Petersburg in accordance with the following fundamental principles:
-
guaranteed provision of social services and social support for the people of
St Petersburg;
accessibility (organisational, territorial, financial and transport) of social services to the
people of St Petersburg;
equality of access for the citizens of St Petersburg to social services and social support
measures;
responsibility on the part of the St Petersburg state authorities for ensuring that citizens’
social welfare rights are observed.
181
Nordic experiences in improving the quality of life of people with disabilities
Mr Jan TØSSEBRO,
Professor at the Norwegian University of Science
and Technology (NTNU)
Chair of the National Council on Disability
Trondheim, Norway
Abstract
Disability policy in the Nordic countries consists of a large number of measures and is also
interrelated with most other policy areas, such as employment, education, physical
planning, ICT, etc. It is impossible to address the full range of relevant issues and
innovations. Given the context of this conference, I have chosen to highlight two issues:
Deinstitutionalisation (inclusion/ normalisation) and accessibility. Both are strongly linked
to the general vision of disability policy formulated in the context of the UN international
year on disability (1981): Equality and full participation.
Deinstitutionalisation is a trend occurring in many sectors (such as psychiatry, special
education, child welfare, old age welfare services, services for people with intellectual
disabilities, etc.) and also in many countries, especially so-called western countries.
Deinstitutionalisation in services for people with intellectual disabilities and was subject to
growing political attention during the 1980s and 1990s, and two Nordic countries (Norway
and Sweden) were the first to close all institutions for people with intellectual disabilities
and replace them by community care. In this presentation I will briefly outline the
deinstitutionalisation of services for people with intellectual disabilities in the two countries,
and describe how it contributed to the improvement of quality of life, and also address the
shortcomings/problems. Some comments on the inclusion of special into regular education
are also made.
Accessibility: Disability is basically a relation between people with impairments and their
environment. Barriers in the environment are of vital importance to the disablement process,
causes accessibility problems, and consequently problems for the participation in society. To
change the man-made environment to suit a larger part of the human variation is thus a key
issue with respect to equal opportunities and full participation for people with disabilities.
Universal Design has become the new catch-word. This understanding has led to changes in
disability policy in a number of countries, often using the Americans with Disabilities Act as
model. In the Nordic countries, this has led to the supplement of traditional welfare policy
with new policies regulating parts of civil society. This involves discrimination legislation,
accessibility requirements in public purchasing, building codes, public contracts and
licensing (for example in transport, telecommunication). These supplements have been the
major policy innovation in some Nordic countries in this decade. The presentation will
briefly outline the new policies and discuss potential benefits and pitfalls, but it is a bit too
early to conclude on the impact in the everyday life of people with disabilities.
Even though the title suggests that the presentation will be on Nordic experiences, most
examples will be from Norway – and some from Sweden.
182
Presentation
Introduction
Disability policy in the Nordic countries consists of a large number of measures and is also
interrelated with most other policy areas, such as employment, education, physical
planning, ICT, etc. It is thus impossible to address the full range of relevant issues and
innovations here. Given the context of this European conference, I have chosen to highlight
two issues: Deinstitutionalisation (inclusion/ normalisation) and accessibility. Both are
strongly linked to the general vision of disability policy formulated in the context of the UN
international year on disability (1981): equality and full participation. To some extent there is
time sequencing between the two issues; deinstitutionalisation was the hot topic of the 1980s
and 1990s, whereas policy innovations for a more accessible society are more focused in this
decade (at least when it comes to the Nordic countries). The main focus of the presentation
will be on deinstitutionalisation since it so far are fewer results of the innovations in
accessibility policy.
From a distance, the Nordic countries may appear similar to one another. See from the
countries themselves, however, one is more inclined to stress the differences. In reality there
are similarities and differences, but it is impossible to address the variation in this brief
presentation. Thus, the more detailed parts of this presentation will mainly be on one or two
countries; Norway and to some extent Sweden.
Deinstitutionalisation – a master pattern
Deinstitutionalisation is a trend taking place in many sectors, such as psychiatry, special
education, child welfare, old age welfare services, services for people with intellectual
disabilities; and also in many countries, especially the so-called western countries. The trend
is so pervasive that Cohen (1985) has found that the phrase “master pattern” suits. This
pattern is the rise of total institutions in the 19th century, the expansion in the first half of the
20th century, and the current downscaling and replacement of such institutions. Even
though deinstitutionalisation is seen as a relatively recent trend, it can be traced back to the
1950s. In the mid-1950s, the number of people in psychiatric hospitals peaked in the USA
and United Kingdom (Scull 1984). At about the same time the ideology of child welfare
changed. The image of institutions or orphanages changed from being the preferred option
to become a last resort. Family care (foster families) became the new preferred option. The
idea was that it is best for all children to grow up in a family environment. This was enacted
in Norwegian child protection in 1953 (Hagen 2001). The same idea was also important in
the first wave of “normalisation” of special education. In Norway, special schools where
residential until about 1960, but were gradually replaced by non-residential special schools
in the 1960s and 1970s. The right to grow up in a family environment has underpinned
services for children ever since (if possible in the own family, if not, in a foster family).
However, inclusion in regular schools was a later development (Tøssebro 1999).
The most attended part of the deinstitutionalisation movement in the last two decades of the
20th century, was services for people with intellectual disabilities. In this sector, innovations
in the Nordic countries played an international role, among others through the concept of
normalisation. Norway and Sweden were also the two first countries that replaced all
institutions by community services. The trend itself, however, is international. Figure 1
illustrates changes in some countries during the 1980s. The trend has continued since those
183
data were gathered and the tide has also turned in some countries where the trend was not
evident in 1990, such as the Netherlands.
USA
Poland
W ales
Scotland
England
1991-93
Netherlands
1980-81
Ireland
Sweden
Norway
Iceland
Finland
0
0,5
1
1,5
2
2,5
Figure 1: People in institutions for intellectually disabled people per 1000 citizens, 1980-1993.
(Source: Hatton, Emerson & Kiernan, 1995)
The emergence of alternatives to institutions
The replacement of institutions in the Nordic countries is based on a complex set of
arguments, but the bottom line is about social justice. It is about providing reasonable living
conditions for all (UN goal of equality), about combating exclusion/segregation, and
facilitating participation for all. During the 1980s, the old “solution” to the problem of
intellectual disability, residential institutions, came to be seen as a problem in itself. The
development was, however, gradual.
The 1950s and 1960s was the golden age of institutions for people with intellectual
disabilities in all Nordic countries. All countries expanded their institution-based services.
But these were also the years when the first signs of new services appeared. In the
beginning, however, this was not due to ideological or political criticism of institutions. The
point was rather to provide a broader range of options. Earlier the only alternative to total
institutionalised care tended to be the family, with next to no support or services. During the
1950s and 1960s one slowly developed day services, non-residential schools and sheltered
workshops for people living with their family. These services were sometimes new units,
but even institutions opened services for non-residents (‘day patients’). In Denmark for
instance, services for non-residents hardly existed in 1950, whereas in 1960 ‘day patients’
constituted 20% of all users. Even “sheltered accommodation” emerged during those years,
first in Sweden.
The emerging new services were for children and adults with mild and moderate
intellectual disabilities, people were total institutionalisation would be a vast and costly
“overkill” compared to their service needs. Thus, the first development of alternatives was
for practical (and economic) rather than ideological reasons. Gradually this changed, and
around 1970 community care was no longer seen as just a supplement. It became the
ideologically preferred option. The concept of normalisation, born in the early 1960s, became
the new ideal. Institutions were criticised for poor living conditions, segregation and
stigmatisation, and for being an environment with few stimuli for learning adaptive
behaviour. Media-inflamed scandals reinforced the critique. Some argued that institutions
actually covered up the appalling living conditions that people with intellectual disabilities
184
were provided. But even though institutions lost support, they were nevertheless still seen
as necessary, in particular for people with substantial service needs.
This changing ideology led to two different political strategies, both linked to
deinstitutionalisation and normalisation. One was to relocate people or offer community
alternatives. In Denmark and Sweden the number of people in institutions peaked about
1970, followed by a gradual downscaling (as in the United Kingdom and USA). The other
strategy was to change the unwanted alternative in a less unwanted direction; to
“normalise” the institutions. They became smaller, more home-like, the dormitories
disappeared, new small institutions were set up in cities or towns, more activity were
provided both with respect to occupation, leisure and sports, etc. This occurred in all Nordic
countries, and was the main change in Norway in the 1970s and 1980s (in contrast to
Sweden where both strategies co-occurred). This led to a very different route to
deinstitutionalisation in Norway and Sweden, as shown in figure 2.
In the early 1980s, time was due for another change. There was growing impatience with the
pace of relocation from institutions. It was seen as much too slow, particularly in Norway.
The criticisms of living conditions were intensified, and the whole issue was reframed in a
welfare state context. A welfare state should be committed to provide acceptable or decent
living conditions for all. Everyone has a right to a home, and this includes people with
intellectual disabilities. Everyone has a right to take part in society, and to be a part of the
general redistributive/equalisation policy of the welfare state. Institutions became even
more unwanted, and one started to question the idea that they were needed for people with
substantial service needs. One had by this time experiences with providing support and
services for children with severe and complex disabilities in collaboration with their
biological family, in the community. And is it really institutions that are needed; is it not
rather a certain level and quality of services? And with the level of staffing in institutions in
the 1980s, cost was hardly an issue anymore. As a consequence of this reasoning, Sweden
stopped new admissions to institutions in 1985 (unless a crisis occurred), and in 1988, a
unanimous Parliament of Norway decided to close all institutions by 1995.
2,00
1,60
1,20
Norway
Sweden
0,80
0,40
Figure 2.
19
98
19
96
19
94
19
92
19
88
19
90
19
86
19
82
19
84
19
80
19
78
19
76
19
74
19
70
19
72
0,00
Number of resident in institutions for intellectually disabled people in Norway
and Sweden per 1000 citizens. 1970-1999. Source: Tideman & Tøssebro 2002.
185
Reform strategies
Even though Norway and Sweden so far are the only countries that have closed all
institutions, the trend is international and England and Wales are pretty close. However,
different countries have followed different routes and strategies. In Norway the
deinstitutionalisation was based on a parliamentary decision and implemented in one grand
move, almost like a national five-year plan. In Sweden, Denmark, USA, United Kingdom,
Ireland, and Australia the process has been gradual. In Wales it was decided to set up
alternatives first and expected institutions subsequently to be depopulated. In most
countries, different agencies run institutions and community care. However, the
Netherlands seems to have chosen a route where established institutions also run
community care and gradually relocate residents from institutional to community settings.
I guess there is no “best practice”. It depends on national circumstances and possibilities,
including the structure of generic services. There are also pros and contras. The Norwegian
way probably caused more anxiety among parents than the Dutch way. I do however think
that one should bear two things in mind when considering strategies 1. One problem in
many cases of deinstitutionalisation appears to be the pace. It takes too long a time. Thus
both Sweden and Wales changed strategy in the mid-1990s. One realised that if institutions
really should be closed, one needed to set up a fixed timetable. This speeded up the process.
2. Another recurrent problem is that community care runs the risk of “inheriting”
institution-like traits, becoming micro-institutions. One would expect this risk to be greater
if the institutions are also running the community care. Generic services are definitely less
likely to be used.
Outcome – changes in the living conditions of people with intellectual disabilities
So far I have actually just commented on the innovation, but not addressed whether this
really led to a better life and more participation for people with intellectual disabilities. In
this section I will briefly summarise the Norwegian experience, but by and large, the
similarities between Norway and Sweden are striking (Tideman & Tøssebro 2002). The
presentation is based on a 12-year evaluation I have been in charge of. Data was gathered in
1989 before resettlement, in 1994 when most people had left the institutions, and in 2001
ten years after the implementation started.
The improvements we experienced can be subsumed under four headings:
-
Accommodation
Family contact
Self-determination
Unmet demand.
Let me, however, start out with family attitudes, as some kind of over-all indicator of
improvements. The families were asked whether they found the new services better than the
institutions. In 1989, before relocation, the question was whether one expected the new
services to be better. The results are shown in figure 3. It shows that few families actually
welcomed the reform. Many expected deterioration of services. However, after the
relocation, most changed their minds, and a large majority supports the new services in both
1994 and 2001.
186
60
54
50
50
40
Percent
40
pre reform
30
23 22
post reform
26
ten years after
20
13
10
12
11
7
4
14
17
4
3
0
yes,much
better
yes, somewhat
better
no significant
change
no, institutions no, this went all
were better
wrong
Family attitude
Figure 3.
Family responses to the question: Do you think your relative is better off
now compared to when he/she was living in the institution (N=176-201).
Source: Tøssebro & Lundeby 2006
This change in attitudes occurs in many countries (Tøssebro & Lundeby 2006), and it raises
one important consideration. In some countries the before-the-move opposition is an explicit
argument for slowing down or halting the process. But that might actually lead to a situation
where people never come to the point where they change their minds. Of course one should
listen to families, but on the other hand the findings suggest that they are not in a situation
where they choose between alternatives. They are rather in a situation where they
experience that the only service they know is in jeopardy. That is hardly an ideal choice
situation. Even though it may be a democratic problem, it is overly simplistic to base
decisions about deinstitutionalisation solely on before-the move expressed opposition. One
must also pay attention to the after-resettlement support shown in many countries.
It is also worth noting that there is no significant relationship between family attitude and
the support needs of the person. Thus, the idea that institutions are needed for people with
substantial service needs is not reflected in family attitudes.
Accommodation. The standard of accommodation is much improved after relocation. Most
people moved to a group home with 3-5 fellow residents. In these group homes, each person
has his or her own unit/apartment, with kitchen, living room, bedroom and bathroom; a
standard which is in keeping with the National Housing Bank’s general guidelines for single
person households. The improved standard does also have a social meaning. A striking
indicator is the families’ response to a question of whether it is easier to visit the person after
relocation. 85% answered “yes, it is”, and among those finding it easier, 80% says the reason
is that it feels more like a private visit. Another aspect is the relations with fellow residents.
To be fellow residents may facilitate forming friendships, but also hostility. A lot of people
actually lived with people they did not at all get along well with. According to staff, in 1989
(in institutions), 55% had problems with one or more of their fellow residents and 34% were
in a group that was not good for them. The corresponding figures after relocation were
26 and 16%. Thus, it is no doubt that the new accommodation also caters better for the need
for a private and personal space.
It is also the case that contact with family, parents and/or siblings, are more frequent after
relocation. This is based both on staff and family judgements. Furthermore, people appear to
187
have more self-determination. This does however need some qualification. The change is only
evident on indicators addressing self-determination in everyday type of choices, such as
meals, what to dress, furniture, but not on issues like “where to live”, “whom to live with”,
etc.
A final point is that the institutions appear to have concealed unmet demand. When the
resettlement process was planned, one also realised that there were about as many people
with similar service needs that were not cared for (cared for by family). Even though unmet
demand continues to exist today, and is a significant problem for those who do not have
their demand met, the numbers have declined significantly. In both Sweden and Norway
more than 2 per 1000 now receive residential services (2.2-2.4 per thousand). This far
outnumbers the maximum numbers in institutions (1.3 per thousand in Norway, 1.7 in
Sweden).
This fairly positive picture does however not tell the whole story. Indeed, a few things have
gone wrong or became worse. There seems to be a reduction in leisure activity, but this is
partly compensated by somewhat more “occupation” type of activities. The main
shortcoming, however, is that a lot of things did not change, or changed less than intended.
This applies for instance to day-time activity or occupation. This continues to be dominated
by segregated day centres or sheltered accommodation. The number of people with
workmates without disabilities is the same as in institutions, and also the number having a
job at a regular workplace (with or without subsidies or other types of labour market
support). The social network has not changed, except for more contact with family. The
inclusion some hoped for did not occur, but neither did the loneliness some feared for.
Loneliness is a problem, but no more in community care than in institutions. The idea that
just placing people together will produce adequate social networks is equally wrong in
community care and institutions. As for contact with neighbours, the brief version is that
people are accepted in their new neighbourhoods, but not integrated. Neighbourhoods in
our country are not exactly socially dense communities, more like a place you pass through
on your way to something else. But most people do nevertheless have some socialising with
one or a few neighbours. This is not the case for people with intellectual disabilities. Thus, in
many cases, people with intellectual disabilities living in the community, continues to live in
a world apart – at work, in the neighbourhood, etc.
This must not be misinterpreted. The deinstitutionalisation did lead to significant
improvements. But considering the ideals and ambitions, the current state of affairs is best
characterised as “half done”. Physical integration did a quantum leap, but it is still a world
apart. Less apart, but – apart. The living conditions are closer to what is deemed acceptable
in our countries, but full participation is way down the road. Everyone meets people with
intellectual disabilities on the bus, in the store and at the somatic hospital, but acceptance is
a better descriptor than integration, inclusion, and participation.
There is no time and space to go into a discussion of why the results turned out to have this
flavour of “half done”, and neither what can realistically be achieved. The main point is that
even though all ambitions were not met, the deinstitutionalisation was a policy innovation
that did improve peoples’ lives and led to more presence in mainstream society.
Accessibility – regulation policy
Deinstitutionalisation was an important issue during the 1990s, and particularly with regard
to people with intellectual disabilities (and partly also mental illness). In the current decade
188
the focus has changed. More attention is paid to issues like Universal Design, indirect
discrimination, and access to society – and all types and degrees of disability. This has lead
to new policy innovations, not as a replacement of earlier policies, but as a supplement. The
changes may partly be seen on a background of international influences, particularly from
the USA and EC, but also as a response to changing understanding of disability.
The practical background was a too wide gap between ideals and reality. One was too far
from the ambitions of equality and full participation (cf. UN International year of disability,
1981). Opportunities are not equal. In Norway a public committee report (NOU 2001, no 22)
concluded that:
“The main problem appears to be that equal opportunities and participation for all is rarely
an important consideration in the planning, decision-making, and practical implementation
of initiatives. The committee claims that this is the most important reason why we have not
moved closer to the goals of full participation and equality.” (p 294).
Thus, a search for alternative measures and strategies were needed. And this search focused
primarily on measures that could potentially influence all kinds of everyday decisions that
sum up to a society that is not accessible for people with disabilities. This is about the
construction of public transport, public buildings, workplaces, telecommunication,
broadcasting, information, sports arenas, restaurants, etc. In contrast to earlier welfare
state/social policy measures, more regulation type of policies was considered (as
supplements). This is policy measures that put restrictions on social actors or parties so that
they will have to take accessibility for all into consideration in their decision-making. The
measures could be anti-discrimination legislation, building codes, licensing of transport or
telecommunication companies, public purchasing or funding, etc. One could for instance
refuse to give licence to a railway company that does not have accessible coaches, timetable
information or ticketing service. And one can use the market power to influence, for
example, computer design. For some time the Norwegian Government has financially
supported local authorities that renovated or rebuilt local schools. In such cases, one can
make support contingent upon the new structure meeting certain usability criteria. And the
same can be done when funding new sports arenas.
This type of measure is related to the changing understanding of disability, the so-called
environmental turn or social understanding of disability. The main point in this
understanding is that disability is not only or primarily an individual dysfunction, but that
the man-made environment is not constructed to be usable for all. It is inaccessible for some
citizens. The weak version of the policy consequences is that efficient policies need to
address the environment, to make the environment accessible for more people. That will
reduce the need for welfare type of measures and be more in keeping with an “equal
opportunities” approach. A stronger version will claim that current practices of constructing
inaccessible environments are discrimination. It is a man-made disadvantage that is out of
keeping with the principle of equal opportunities. If someone can not enter a restaurant, it
may because there are stairs or because the doorman says “no blacks”, but in both cases it is
discrimination, deliberately or by consequence. In this perspective, disability and
accessibility is linked to the question of human rights. In this respect it is logical that the UN
is working on a convention on disability. If someone is excluded from public information, it
is a democratic problem.
This understanding of disability calls for policy strategies that can counteract the creation
and recreation of inaccessible environments. And the most important policy innovation in
189
this area currently, is the use of regulation type of measures. Many countries have enacted
anti-discrimination legislation, with or without accessibility clauses, but typically
considering inaccessibility as indirect discrimination. The EC has adopted regulations on
city busses, and has adopted new regulations on public purchasing permitting public bodies
to ask for accessible design of the products one intend to purchase. With this type of
legislation, governments can decide not to buy products, such as computers, that are
inaccessible to blind people, or licence a telecommunication company that does not provide
adequate alternatives for deaf people. Through the government’s market power, this will
most likely make a difference on the availability of usable/accessible products. It will pay
off to make the products usable for more people.
Even though we see a shift in the outlined direction, this is quite new. In Norway, an antidiscrimination legislation is on its way, new legislation on public purchasing will be in
operation from 2007, a new act on building regulations is considered. Thus, a whole set of
new policy measures seem to come into operation during the last part of this decade.
However, we do not yet know how wholeheartedly the new initiatives will be implemented
and enforced. It is potentially important innovations. It can be steps to make our societies
more accessible for disabled people, and thus improving both the quality of life and creating
new opportunities for participation. But currently, it is too early to conclude about the
efficiency and results. Wholehearted implementation will be the “key”.
References:
Cohen, S. (1985). Visions of Social Control. Polity Press, Oxford
Hagen, G. (2001). Barnevernets historie.[History of child protection] Akribe, Oslo
Hatton, C., E. Emerson & C. Kiernan (1985). People in institutions in Europe. Mental
Retardation, 33, 132
NOU (Norwegian Public Reports) (2001, no. 22: Fra bruker til borger [From user to citizen]
Scull, A. (1984). Decarceration. Prentice Hall, Englewood Cliffs, NJ
Tideman, M. & J. Tøssebro (2002). A comparison of living conditions for intellectually
disabled people in Norway and Sweden. Scandinavian Journal of Disability Research, 4, 23-42
Tøssebro, J. (1999). Da tidevannet snudde. [When the tide turned] In Dalen, Rygvold &
Tangen (eds). Mangfold og samspill, om minoriteter og avvik i familie og samfunn,
Universitetsforlaget, Oslo Chapter 1
Tøssebro, J. & H. Lundeby (2006), Family attitudes to deinstitutionalisation: Changes during
and after reform years in a Scandinavian country. Journal of Intellectual & Developmental
Disabilities, 31, 115-119
190
Portuguese experiences in improving the quality of life of people with disabilities
Mrs Idalia MONIZ,
Secretary of State for Rehabilitation
Ministry of Labour and Social Solidarity
Portugal
Abstract
The improvement of the quality of life of people with disabilities and their families is related
to the full integration and participation in all society’s spheres. In fact, it is a commitment of
the Portuguese Government being carried out, in its own ministerial structure, through a
Secretary of State’s Office particularly devoted to the definition of disability policies and to
co-ordination with other ministerial departments.
The protection of people with disabilities against all types of discrimination and abuse and
their full integration in society lead us, obligatorily, to mainstreaming in all public political
areas.
In effect, the European Union, the Council of Europe and the United Nations have all
reinforced the positive impact of mainstreaming in their disability policies, as an integrating
part of the public policies related to several sectors, such as health, education, vocational
training, employment, social security, culture and information society.
In fact, the mainstreaming of the disability policy favours a better integration by optimising
and speeding up the available resources. Therefore, structural changes were launched
aiming at the setting-up of a fair society with equal opportunities, in which the principle of
exclusion is replaced by that of participation, and in which the involvement of all should be
helpful, co-responsible, stable and supportive.
The Portuguese Government is particularly concerned with its citizens’ capacities and in the
abolition of unfair and social prejudices.
The step forward will be the bet on the efficient promotion of equal opportunities,
encouraging policies of full citizenship, always having people’s interest in mind.
The adoption of an integrated plan that appeals to the participation of all other concerned
departments of the government was considered as an urgent measure at the outset for equal
opportunities and the struggle against discrimination of people with disabilities.
This approach led us to the implementation of the First National Action Plan for the
Integration of People with Disabilities or Incapacity (2006-2009) that was launched, last
month, which defines national strategy for rehabilitation.
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Presentation
Madam Secretary of State,
Your Excellencies,
First of all, I should like to thank the Council of Europe, the Russian Federation, Presidency
of the Committee of Ministers, and in particular the Russian Ministry of Health and Social
Development, and the Norwegian Presidency of the Nordic Council of Ministers.
I am convinced that governments must increasingly come to see policies for people with
disabilities as global in their reach and relevance, and insist that all political authorities
promote them unreservedly.
These policies are our only hope of saving a large part of the world’s population from
poverty, exclusion, inequality and indifference.
As a member of the Portuguese Government, I have a duty to do all I can to ensure that
none of these things exist in Portugal. I am talking about them here in the hope that we can
pool the lessons we have learned and find fresh solutions to these problems, on which we
agree so closely. One of the Portuguese Government’s main priorities is to make life better
for people with disabilities and their families, and enable them to play a fully active part in
the community.
To achieve this overall objective, we need active strategies, agreed between the state and
civil society (particularly NGOs), and based on a culture of information, advice, readiness to
listen and permanent dialogue.
Portugal has an advisory body in this area – the National Council for Rehabilitation and
Integration of People with Disabilities. Its membership, which includes representatives of
government, associations, employers and employees, reflects the complex nature of the
issues.
Early in 2005, the Portuguese Government demonstrated its commitment to people with
disabilities, their families and NGOs by taking the unprecedented step of appointing a
special government official to devise, implement and co-ordinate policies for people with
disabilities, sharing responsibility for them with the various public and private players
involved in making them work.
The main feature of the line pursued by the government, and specifically the department I
head, is an actively interdisciplinary approach to these policies. That approach is an integral
part of all the government’s sectoral programmes, covering health, education, vocational
training, employment, taxation, welfare, accessibility, the information society, housing,
culture, research, sport, tourism and leisure. The fact that questions relating to people with
disabilities are inherently interdisciplinary is already recognised in the general regulations
on preventive action, training, retraining and participation, which the National Assembly
passed in 2004, and which state that: “Policy on preventive action, training, rehabilitation
and participation for people with disabilities must be pluridisciplinary, and be developed
consistently and comprehensively in all sectors”.
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This interdisciplinary approach also applies to laws tabled for adoption by ministries, which
are required to assess their impact on people with disabilities.
To ensure that this approach has genuinely positive effects on quality of life and on
participation, the Portuguese Government has decided that an Action Plan is needed to fulfil
its basic aim, which is: to systematise action by all the ministries, and facilitate their active
involvement in implementation of its prevention, training, rehabilitation and participation
programme for people with disabilities.
On 31 August 2006, the Council of Ministers duly adopted this first action plan, which will
run until 2009. It covers measures and projects to promote the rehabilitation and integration
of people with disabilities in Portuguese society and 15 ministries are co-operating on it –
which shows that policies in this area are indeed multidisciplinary.
The plan is something genuinely new in Portugal’s political experience, and was the subject
of a vast information and consultation exercise, involving the public and the great majority
of the NGOs which represent, and provide social services for, people with disabilities and
their families. It was presented and discussed throughout the country, and my office
received numerous recommendations and suggestions. The government’s advisory service
and the Portuguese member of the Economic and Social Council were also involved in this
consultation process.
The plan’s whole approach is based on emphasising the things people with disabilities can
do, not the things they cannot do. It is aimed at active, direct and community-based policies,
targeting the real needs of individuals.
In fact, this first plan, which my office is directly promoting, is a policy instrument and is
being co-ordinated on a high and specialised level.
Strategically, it is divided into two main parts. The first is concerned with the three areas
where Portugal needs to spend more, and comprises 90 measures, costing a total of
321 million euros. For each, it indicates the timetable, the person in charge, the budget and
how that budget is to be used.
The main strategic sectors are:
–
–
–
Accessibility and information.
Education, qualifications and employment.
Integration and dignified living conditions.
The second part of the plan covers basic conditions for these measures – conditions which
are to apply until the plan is fully implemented. The measures themselves include an interministerial centre to provide back-up and sustain the necessary interdisciplinary approach,
as well as the research, data-collection and statistics needed to consolidate our information
on disability. Since all of these are things on which Portugal has so far done relatively little,
policy planning faces certain problems
While relying on this political instrument, the government is also following the guidelines
laid down in the Council of Europe Action Plan to promote the rights and full participation
in society of people with disabilities, with a view to improving their own and their families’
quality of life in Europe between 2006 and 2015.
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The Portuguese Government’s first Action Plan for the integration of people with disabilities
reflects recognition of one key principle: Portuguese society has a civic duty to minimise the
impact of disability by providing a consistent, integrated and comprehensive range of
programmes, projects and genuinely accessible services.
In the specific field of accessibility and communication, Portugal is making an all-out effort,
reflected in new laws and groundbreaking programmes.
On the legislative side, a new law published in August 2006 deserves special mention. This
contains regulations which require builders and planners to ensure that public spaces,
collective facilities, and public and residential buildings are accessible. It provides for fines,
and also makes it possible for NGOs to monitor projects and report non-compliance to the
relevant authorities. In fact, a law on accessibility has been on the statute book since 1997,
but its effectiveness, in terms of penalties and inspections, has fallen far short of
expectations. Our central legislative aim in this area is full compliance with the principles of
Universal Design, which make life simpler and better for everyone, by focusing on aims
which are realistic, people-friendly and consistent, and calculated to promote social
interaction, equal opportunity and the emergence of a new culture of social solidarity.
As part of this new policy of maximising accessibility, Portugal has made great efforts to
bring people with special needs into the information and knowledge society, by including
innovative measures in its technology plan for that purpose. It is also funding technical aids
and support technologies in various areas: health, education, security, vocational training
and employment.
It is becoming increasingly essential to inform the public and increase their awareness, and
several national programmes have been devised for this purpose. An example is the “School
Watch” programme, which is jointly run by my office and the Secretary of State for
Education. This programme sets out to make pupils and teachers aware of problems of
physical access and communication, and ways of solving them. Similarly, the accessible
beaches scheme, which is part of the “Tourism for All” programme, reflects and recognises
this sector’s importance. By 2007, Portugal will have 150 fully accessible beaches (it already
has 83) – which is an essential factor in quality of life, and particularly recreation, for people
with motor or mobility problems
Television has a vital part to play in changing attitudes to disability and promoting
accessibility, and this is reflected in CONSIGO, a magazine programme which goes out
weekly on the public channels. This gets good ratings, highlights effective ways of
increasing accessibility, improving quality of life and promoting participation for people
with disabilities, and also helps to dismantle residual prejudice.
More generally, the public and private channels are working together to make television for
all a reality. This aspect is covered by law, and includes information and entertainment
programmes which are sub-titled and interpreted into sign language – recognised as an
official language in the Portuguese Constitution – and documentary programmes on the
problems of people with disabilities.
In fact, public visibility of questions relating to people with disabilities has improved
markedly in Portugal. Many of these people, who were previously invisible and unable to
play any active part in the life of the community, are now doing precisely that – which both
humanises the community and improves its image.
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Other factors making for increased participation include high-quality, groundbreaking early
action programmes for children up to the age of 6, and the “school for all” programmes on
TV, which are either run by the authorities as part of their inclusive education projects, or
sponsored by private agencies, particularly co-operatives and private institutions working to
promote social solidarity.
In this privileged field of action, special mention should be made of the recent expansion of
a government programme for people with disabilities, as part of its “new opportunities”
scheme, which helps to bring the average school performance of people with disabilities into
line with that of the rest of the Portuguese population. This programme validates and
recognises skills acquired throughout a person’s life, and makes alternative provision for
regular schooling, increasing the schooling levels of people above the age of 16. This whole
process involves adapting approaches and materials to match the various types of disability.
This project is actually a perfect example of mainstreaming, making it possible to adopt a
programme for everyone which also caters for the needs of a specific group. As for
vocational training to make people with disabilities employable, the national employment
plan includes a number of innovative measures, which have achieved genuinely
encouraging results in a context where certain market constraints apply. Here, it should be
emphasised that people with disabilities are sometimes trained in a normal setting,
alongside people who have no disabilities.
In this connection, we should also emphasise the surprising and gratifying emergence of a
culture of social responsibility among Portuguese employers - which does much to improve
the actual employability of people with disabilities.
The Portuguese Government is using a quota system to promote employment – 5% for the
public, and 2% for the private sector. However, the present policy of curbing public
expenditure is putting a brake on new appointments.
To improve all-round quality of life, the government is also focusing on culture in the broad
sense – sport, painting, drama, music and literature – in an effort to ensure that everyone can
participate on an equal opportunity basis. It is also funding a number of pioneering projects.
Activities of this kind play a decisive part in highlighting the very real artistic, sporting and
creative potential of people with disabilities.
Participating in culture and sport confers a certain prestige on them, and attitudes in
Portugal are changing rapidly. We are currently initiating co-operation with the Secretary of
State for Culture, with a view to making cultural activity genuinely inclusive and nondiscriminatory, and allowing artists with disabilities to take their place alongside wellknown figures on the Portuguese cultural scene.
In the social welfare field, and remembering that the state has a duty to ensure sustainable
levels of dignity for people with disabilities, we are currently reviewing pensions and family
allowances, to ensure that the more dependent are better protected, and that those who are
able to work are encouraged to do so.
Thirty years ago, when policies for people with disabilities were being discussed, the
emphasis was chiefly on assistance measures, and no attempt was made to promote that
autonomy which now counts as a priority.
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In conclusion, I should like to mention a law (the Act of 28 August 2006), which was recently
passed by the Portuguese National Assembly. This prohibits and punishes direct or indirect
discrimination of any kind on grounds of disability and aggravated health risk. All
individuals and corporations, both public and private, must respect instruments which, like
the United Nations Convention, protect and promote the capacity for action for people with
disabilities.
This commitment and these projects are undoubtedly helping to make life better for our
fellow citizens with disabilities and their families, and to give them a fully active part in the
life of the community, thus contributing to national cohesion and solidarity.
As I see it, the path that Portugal is following comprises a whole series of small steps, which
we are not taking as fast as we should wish. But I am sure that radical changes, like those I
have described, are genuinely giving effect to the Portuguese Government’s determination
to turn Portugal into a country which is genuinely open, inclusive and caring, where people
with disabilities and their families can lead the lives they want to lead, and where we can all
fulfil ourselves, both as policy makers and citizens.
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Romanian experiences in improving the quality of life of people with disabilities
Mrs Gabriela DOBRE,
Senior Counsellor of the National Authority for Persons with Handicap
Romania
The system of protection of persons with disabilities in Romania is rather recent, starting
with 1990 when the Government of Romania set up, as institutional structure, the State
Secretariat for the Handicapped. This institution has gone through several transformations
of contents and form becoming since 2003, the current National Authority for the Persons
with Handicap (NAPH).
NAPH is a governmental public institution, subordinated to the Ministry of Labour, Social
Solidarity and Family of the Romanian Government, having in charge the national strategy
and the policies concerning persons with disabilities.
NAPH co-ordinates, guides and controls the activities of special protection of persons with
disabilities (handicap, according to the 50th article of the Romanian Constitution), as well as
their social integration, and has the following attributions:
-
elaborates the governmental strategy and the plan of action in the field of disability,
according to the UN Standard Rules, the established EC legislation, principles, norms
and values, worldwide agreed;
initiates, elaborates and advises the regulations and standards in the field of special
protection of the persons with handicap;
acts to promote deinstitutionalisation of people with disabilities and to develop the
community-based services;
analyses the deficiency factors, generators of the handicap, and establishes the adequate
measures for preventing their appearance.
implements in Romania the established EC legislation in the field.
The events of 1989 revealed the situation of persons with disabilities: those living in isolated
centres and others, the majority, living within the family. In 1992 entered into force the first
regulations in the field which centered on the special protection, concentrating on financial
compensations and facilities in prejudice of the active and participative measures aiming at
socio-professional integration. Even though modified and completed several times, the
legislative framework did not succeed in ensuring the conditions for a real protection in
terms of observing the principles of the full citizenship and of the independent life of
It was imperative that the analysis of the legislative documents in view of the European
concepts and regulations remains at the foundation of the reform of the system of protection
of persons with disabilities persons. The elaboration of the National Strategy for the protection
and social inclusion and integration of disabled persons for the period 2006-2013 “Equal
opportunities - towards a society without discrimination” was substantiated by the evolutions
and the needs identified of the system of protection of persons with disabilities and took into
consideration European and international documents, the provisions of the European Social
Charter, documents of the established EC legislation, as well as documents drawn up by
non-governmental organisations of Romania, organisations with a well-known activity in
the field.
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During the debates, the representatives of the non-governmental organisations asked to
renounce to the syntagm special protection. The national strategy is centered on the person
with a disability considered as a citizen with full rights and obligations. By this, the
Romanian Government has in view the transition from the mainly medical approach of the
disability issue to the social approach, as well as to cease to consider the person with a
disability as a “patient” in favour of creating the circumstances for his/her affirmation as a
citizen with full rights.
For the person with a disability to benefit from equal opportunities and actively participate
in community life, continuous steps are necessary, which are politically assumed and
institutionally sustained. The strategy acknowledges the fundamental principle, according
to which society has the responsibility to ensure that the effects of the disability are the
lowest possible, and that it has to meet the integration efforts of the person with a disability
through “adapting” itself to that person. The goal of the strategy is to ensure the full
exertion by all people with disabilities of their rights and fundamental liberties, with a view
to enhancing the quality of their life.
The fundamental concept of the strategy is the freedom of choice: the person with a
disability has the possibility to make decisions regarding his/her own life, to manage the
complementary personal budget and choose the services he/she needs, as well as the providers
of such services, based on individual service contracts.
The national strategy entered into force in November 2005. Until 2013 steps have to be taken
so that the persons with disabilities from Romania benefit from real rights and opportunities
in terms of improvement of their personal life. This is the mission of the strategy on which
basis the three main objectives have been set out:
-
to consider persons with disabilities as active citizens who have the possibility to choose
for themselves and who can control their own lives;
to give support to the families having family members with a disability;
to increase the degree of employment for persons with disabilities.
For each objective several directions of action are identified.
The setting-up and the development of the social services within the community constitute
the premises for the increase the degree of autonomy, of the choice and, implicitly, of the
quality of life of people with disabilities. Very important is the fact that the National
Strategy identified the sources of financing for the development and diversification of the
social services such as: day care centres, respite care centres, centres with vocational or
rehabilitation profile, protected homes, home care services. The promoters of the social
services at local level have been, in most cases, the non-governmental organisations. The
public-private partnership is now encouraged and developed. There is an annual budgetary
line for financing projects, as well as the possibility to apply for Programmes of National
Interest.
In 2005 the National Disability Council was established and it had constituted a constant
partner of NAPH ever since, especially with regard to consultations held for the elaboration
of legislative initiatives.
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We are fully aware that the transition from the institutionalised to the community-based
care, from living in common to independent living implies the provision of basic services
and person-centered support structures.
In 2006 entered into force the Law of the national system of social assistance, under the coordination of the Ministry of Labour, Social Security and Family. The provisions of the
National Strategy for disabled persons ensure coherence of the social assistance through
monitoring and evaluation of the observance of the rights of people with disabilities. At
national level, in 2007 two institutions will be created with distinct attributions: one in
monitoring the observance of the rights of the persons in need (the Social Inspection) and
one in designing the social services based on the needs identified (the Social Observer).
By the end of June 2006, in Romania, the number of persons with disabilities was 468 607
(55 572 children and 413 035 adults), out of which 451 067 (96.26%) were living in the family
and/or independently and 17 540 (3.74%) were residents in the residential care institutions
under the co-ordination of NAPH.
To ensure social services within the community, consistent with the needs identified,
constitutes at present a major priority. In this respect, the growing involvement of the local
authorities is needed, as well as the preparation to access the future European funds. In
parallel, NAPH elaborated the National Plan for Training. During the period 2006 - 2008
sufficient financial resources have to be allocated to continue the training of the personnel
working in the field of protection of persons with disabilities.
Also, through public awareness campaigns on the needs and on the potential of persons
with disabilities we try to change mentalities and prepare the transition from the medical to
the social approach of the disability.
Social inclusion can also be measured by the degree of employment. In this moment, in
Romania there are 15 000 persons with disabilities employed on the labour market, in
sheltered production units, or who work at home. To encourage persons with disabilities to
become employed and active members of the community is one of the goals of the National
Strategy. But we have to emphasize the importance of the support services that help these
persons to find and keep a job, as well as the importance of diversifying the range of the jobs
they can access and the necessity of involving the employers in this process.
On the basis of the National Strategy, NAPH initiated the project of the “Law concerning the
protection and promotion of the rights of disabled persons”. Currently, the draft law is
under debate in the Parliament. The new law is in line with the European provisions in the
field, enhancing values as non-discrimination, equal opportunities and participation, etc.
The “Action Plan of the Council of Europe for the promotion of the rights and full
participation of people with disabilities in society” is a reference document, source support
and source of inspiration, since the government has foreseen, in its programme, measures
for the improvement of their lives and support for their full participation into society.
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Implementing the Action Plan in Hungary
Mrs Edit RAUH,
Undersecretary of State of Equal Opportunities
Ministry of Social Affairs and Labour
Hungary
The number of people with disabilities was assessed in the 1990 and the 2001 censuses;
according to the latter there were 577 000 people with disabilities, which is 5.7% of the
population. This data – even according to KSH, the Central Statistical Office –
underestimates the number of people with disabilities, thus we can estimate their numbers
at around 600 000. We can see from the categories of the 2001 census that people with
physical disabilities represent the largest proportion (43.6%) within people with disabilities
population, while the proportion of people with intellectual disabilities is approximately
10%, and the proportion of people with visual disabilities is 14.4%. The proportion of people
with other disabilities increased from 6.7% (data of the 1990 census) to 21.6%. 10% of people
with disabilities suffer from hearing disabilities and communication disabilities.
According to 2001 census data 13.2% of people with disabilities have studied in some special
elementary school. People with physical disabilities usually have higher qualifications than
elementary education, while fewer people with sensorial disabilities gain qualifications at
higher level than elementary education, and students with intellectual disabilities are
practically totally excluded from higher education.
According to the 2001 census, the employment rate of people with disabilities was 9% as
compared to 16.6% in 1990. Parallel to that the 0.7% unemployment rate of people with
disabilities increased “only” to 2%. This is explained by the fact that such people became
inactive earners (from 57.5 to 76.7%).
In 2000, 2001, 2002 and 2003, one third of those concerned managed to get placement on the
labour market.
Recommendations of the Action Plan of the Council of Europe
According to the integration of the defined principles to the related policies, laws and
practices and to implement the actions recorded in the Action Plan, we worked out the New
National Programme of Disability Affairs which was announced in a draft resolution by the
parliament.
Towards promoting the application and implementation of the Action Plan (2006-2015) in
the areas which do not belong to the direct sphere of authority we are planning the use of
the European Structural Funds. We made separate programmes aiming at disability affairs
and equal opportunity and also to develop services at the same time.
For this purpose, that is ensuring the widest application of this recommendation amongst
the concerned participants, we translated the Action Plan into Hungarian, we translated the
National Programme of Disability Affairs into sign language, an easy-to-read version and
we published it in Braille.
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The New National Programme of Disability Affairs and the New Hungary Development
Plan
The priorities of the New Programme of Disability Affairs are the following: equal access,
incentive employment, formation of the institutions of complex rehabilitation, improving
the quality of social services namely community-based services.
Based on 2004 data, 13.3% of all public buildings maintained and run by local governments
were accessible. As for public buildings run by ministries, this proportion differs depending
on how many public buildings are run by the given portfolio; this ratio is 60-70% as an
average. In order to make the built environment accessible and to transform it according to
the needs of people with disabilities, the review and revision of construction legislation and
standards, as well as the monitoring of the enforcement of such provisions in connection
with public buildings are to be continued. A priority in the transformation of the built
environment should be making accessible buildings owned, managed or run by central
governmental organisations. In case of organisations owned, managed or run by local
governments, making institutions of health, social and labour affairs fully accessible and
making information available in them (information boards, sound signals, etc.) should be a
priority. In the case of pedagogic and education institutions, efforts should be made to have
at least one accessible nursery school and school for every sub-region which is within
reasonable distance from the place of residence. Central governmental support is needed to
make the means of public transport and passenger facilities physically accessible. In public
parking, an appropriate number of parking places and parking cards must be guaranteed.
Equal access to public services is to be promoted by use of the most up-to-date information
and communication technologies. People with disabilities sometimes need special
information, or specially drafted information for leading an independent life. Issuing and
disseminating publications (in printed, electronic form or in a form done by using other
technologies) that provide information for example on equal access (physical and
communication accessibility) to public services need to be supported. Access to information
must be supported – also by making web pages accessible – in Braille format or
electronically, by synthesized speech, by using sign language or subscription, in easy-tounderstand format, or in pictograms All information providing, consulting and counselling
services and training need to be expanded through which people with disabilities can get
information on services they can use, and which help them to meet their demands. At least
one news programme per day should be transmitted every national television channel so
that people with hearing disabilities could understand it – by using sign language or
subscription – using the means of media regulation. Info-communication accessibility and
the eradication of digital illiteracy of people with disabilities are also to be supported, so that
public services offered via info-communication means and solutions become accessible. The
necessary human and physical resources are to be provided for such purposes.
The possibility to establish a support system that would create an interest – both in the
employer and in the employee – in the preservation or transformation of the job of the
employee who became disabled, or in the re-training of such an employee is to be examined.
Re-regulation is necessary when people with disabilities become individual entrepreneurs,
and also when services and allowances support atypical forms of employment. Part time job,
tele-work and other forms of employment should be adopted, employers should be made
aware, and the necessary social services should be provided so that families caring for
children with disabilities could also get integrated into the labour market, or they could
return to work. Local governments’ interests should also be generated so that inactivity is
201
reduced. Grants should be provided – through application schemes – to promote services
that help in the activities of people with disabilities.
Rehabilitation institutions of people with disabilities operating on the basis of Act III. of 1993
on social administration and social care are to be transformed in such a way that they truly
provide complex (mental health, training, social and employment affairs) rehabilitation for a
maximum of 5 years – with or without boarding – and as a result, people using such services
become capable of living independently in their own homes or in small group homes, and
work in the open labour market or in sheltered workshops.
The possibility of developing early intervention for children with disabilities under 6 in
public educational, social and child protection institutions into a professionally and
financially unified system is to be examined.
New foundations are to be laid for the assessment of working capacities, and the
rehabilitation system which follows such an assessment procedure, which is aimed at
putting people to work, which is successful and complex, which have elements that build
upon one anther and complement to each other (health, employment, mental health, and
social rehabilitation); the aim is that rehabilitation – during which rehabilitation annuity can
be paid – would be followed by employment.
The new assessment system of the change in working capacities is to be developed in such a
way that focuses on the present level of working capacity, the trainability of the given
person, his/her qualifications, occupation and age be all taken into account. A complex set
of professional criteria needs to be worked out by transforming the medical assessment
system, and these criteria would cover the status of the given individual, including the
extent of the disability, the major directions of rehabilitation and the use of the remaining
functions. The institutional system for the immediate and complex rehabilitation of people
becoming disabled due to accident or disease must be developed (for example basic
rehabilitation of blind people).
Opportunities provided by an information society should be advertised more widely among
the family breadwinners, just as the use of information and communication technologies,
through which they might even learn a new profession and get a job.
The district nurse network, the family (paediatric) practitioner, the child welfare services,
the family help centres, the expert and rehabilitation committees and the educational
guidance centres in case of disability is interpreted as defined by the ICF could play a very
important role in preventing and handling family problems and in recognising the suspicion
of disability. Support services, home help, home meals, and the village caretaker network
could be of help in everyday life. The staff of such institutions must be provided with
sufficient knowledge on disabilities, they are to be given training and also means of
communication and physical access are to be provided to these services.
The institutions of complex rehabilitation are used mostly by the relatively smaller number
of people with congenital disabilities for the sake of successful school education and in the
hope of getting a job. In order to restore their working capacity they are also used by a larger
number of people who became disabled due to accident or disease, and are over the age of
40. In the case of both groups it is true that the specialised institutions of rehabilitation
(special education in the public education system, child protection special services,
rehabilitation health and social institutions, rehabilitation groups of the labour centres, etc.)
202
are available only in larger cities. Therefore their use requires significant efforts in time and
money. The professional, legal and financial possibilities to bring the rehabilitation services
providing adequate help closer to the people who use them are to be investigated. The
system of transport allowances and the transport services must be continued to develop
(including support services, purchasing school buses, and the network of village caretakers,
taxi services, and transport by ambulance).
The plan of source-share among the departmental programmes of the New Hungary
Development Plan
Operational Programmes
Development of the economy
Transport
Development of human resources
State reform
Modernisation of civil service
Human Infrastructure
Environment, energy
Implementation Support Programme
Total
min. %
Min.
Billion Ft
8.5%
588
19.6%
1 361
11.7%
810
0.5%
34
0.5%
33
5.2%
359
14.9%
1 037
4%
238
64.4%
4 460
max. %
Max.
Billion Ft
12.7%
882
26%
1 802
14.8%
1 027
0.6%
43
2%
141
9.1%
634
20.6%
1 430
85.8%
6 197
Publication of the National Programme of Disability Affairs
As I mentioned earlier we translated the National Programme of Disability Affairs into sign
language, easy-to-read version and we published it in Braille. Beside these translations we
also translated our programme into English (The Draft Resolution of Parliament
No 10/2006. (II.16.) on the New National Programme of Disability Affairs), German
(Parlamentsbeschlussvorlage Nr. 10/2006. (II. 16.) über das neue Landesprogramm für
behinderte Menschen) and French (Projet de résolution nº 10/2006. (II. 16.) de l’Assemblée
Nationale Nouveau Programme National pour les Handicapés). All of them are available on
the following site http://www.szmm.gov.hu/main.php?folderID=1295 which is the home
page of the Ministry of Social Affairs and Labour in Hungary. In the next site you can see
one page of the easy-to-read version.
Thank you for your kind attention!
203
Spanish experiences in improving the quality of life of people with disabilities
Mr Pascual DE LA PARTE,
Consul General
Spain
Ladies and Gentlemen,
On being asked what quality of life entails, the vast majority of people link the concept to
the ability to work and access to goods and services such as housing, education, health,
mobility, leisure and security. And it is not just the non-disabled who answer the question in
this way, since for people with disabilities the underlying nature of the concept is the same
as for anyone else.
The idea of quality of life is closely connected with that of autonomy. For people with
disabilities occasional recourse to another person's assistance or to technological solutions
not only means that the difficulties linked to a disability can be overcome, but also makes it
easier to achieve personal quality-of-life objectives, such as the ability to be independent,
integration in social life and participation on equal terms
Public authorities are accordingly under an obligation to adapt the physical and social
environment so that the causes of social exclusion, discrimination and inequality of
opportunity are eliminated.
In this connection, I must say that disability has become a political priority for the Spanish
Government, which is committed to ensuring that people with disabilities enjoy equal rights
in all areas of life so they can be fully integrated in society. This is the objective pursued by
the legislation and schemes already implemented or being studied by our government.
In Spain the basic legislation in this field is the "Law on equality of opportunity, nondiscrimination and universal accessibility for people with disabilities".
Until this law was passed the measures taken by the public authorities focussed above all on
the person and gave pride of place to prevention, medical and psychological care,
rehabilitation and educational, social and vocational integration.
The new legislation has given a different slant to how disability is perceived since it
concentrates on the right to equal opportunities, construed as the elimination of all kinds of
discrimination on grounds of disability, whether direct or indirect, and entails taking
positive action to prevent or overcome the disadvantages encountered by people with
disabilities in playing a full role in political, economic and social life. The result is an
enhanced effort by the authorities to adapt the environment, goods and services so as to
guarantee accessibility on an equal basis and without discrimination.
This law establishes a whole series of principles - universal accessibility, design for all,
equality of opportunity, normalisation and autonomy - and aims to guarantee people with
disabilities full enjoyment of their rights.
204
The second legal instrument I wish to talk about is the "Bill recognising and governing
Spanish sign language and defining support measures for communication by and with deaf
people, people with hearing disabilities and blind-deaf people", which attempts to meet the
communication needs of people with a sensory handicap, taking account of the diversity of
disabilities affecting people in this category, who live in a society where the majority has no
hearing problem and who have to overcome communication barriers in order to integrate.
The third measure I wish to describe is the Action Plan for Women with Disabilities, which
contains guidelines on guaranteeing disabled women's rights through:
-
the implementation of awareness-raising campaigns to dispel stereotypical ideas about
such women, foster their self-esteem, enable them to take autonomous decisions and
allow them to participate on equal terms;
gender and disability mainstreaming in training programmes for professionals in the
educational field, human resources, the media, the health sector, social services and the
courts.
This brings me to the subject of employment measures.
One of the best social inclusion methods is to give people jobs, which is why the government
is focussing on employment. In this sphere the fundamental aim is to integrate people with
disabilities in the ordinary labour market. In this connection, attention can be drawn to the
establishment within the Special Employment Centres of support units providing personal
adaptation services, whose role is to identify the employment-related support needs of
people with disabilities. Mention should also be made of the regulations on sheltered
employment enclaves for workers with disabilities, which aim to facilitate the transfer of
people with disabilities from the Special Employment Centres to jobs with ordinary
companies in the open labour market.
In this field I also wish to mention the future "Law on Employment Promotion", which will
enable companies recruiting people with disabilities to benefit from a significant number of
support measures in the form of grants, bonuses for exceeding the social security quota and
other advantages and will provide for a form of supported employment in the ordinary
labour market, targeting people with severe disabilities.
Another scheme being implemented by the Spanish Government is the National
Accessibility Plan.
Accessibility is no longer synonymous with the elimination of mere physical obstacles but
now extends to what is referred to as Universal Design, which entails making all kinds of
areas, products and services disability-friendly.
Accessibility, originally perceived as a basic need of a particular social group, has gradually
come to be generally recognised as a factor which improves the quality of life of all citizens.
Solutions now very widespread, such as buses with low entrance platforms, lowered kerbs
or illuminated signs and the provision of acoustic information in public buildings and
transport systems, are examples of how products developed for a minority can improve the
majority's living conditions. Solutions designed to meet certain people's needs have proved
to have cross-over benefits for everyone.
205
The National Accessibility Plan for 2004-2012 constitutes the corner-stone of government
policy to promote accessibility in the medium and the long term. It is founded on coordinated action by the various public administrations and seeks to develop general
accessibility strategies applicable in all of Spain's regions. It attaches particular importance
to "user" participation, principally through the involvement of associations representing
One of the Spanish Government's key social policy objectives is to set up a national
dependency scheme to improve quality of life for a group of people with the greatest
support and care needs, those with the most severe disabilities. These people's rights are
guaranteed through the establishment of a National System of Dependency, providing a
range of services and universal economic benefits aimed at promoting individual autonomy
and providing care and support for people in situations of dependency throughout Spain.
Provision is made for support to be available to anyone who cannot cope alone, ranging
from people who require assistance at least once a day to carry out certain activities of
everyday life to people whose total lack of autonomy, whether in mental, physical,
emotional or sensory terms, necessitates the constant presence and assistance of another
person.
Dependency is approached from a dual standpoint - support measures for people who
cannot fend for themselves and their carers, combined with action to help people with
disabilities and elderly people lead more autonomous lives.
The services provided include telephone helplines, home helps, day and night centres and
residential facilities. As for the economic benefits, three possibilities are envisaged: a grant
that can be used to pay for a service not available from the public sector, an allowance for a
family member or other carer looking after a dependent person where the appropriate home
and social environment exists and personal autonomy benefit intended to afford recipients
the possibility of access to education and employment and the capacity to lead a more
autonomous existence as regards the performance of activities of everyday life.
Another line of action for the Spanish Government is social dialogue. Co-operation, dialogue
and prior consultation with people with disabilities, via their representative organisations,
must always be a central element of the design, implementation or evaluation of any
disability strategy or policy. In Spain the National Disability Council is the collegiate body
that gives an institutional basis to co-operation between associations representing people
with disabilities and their families and the public authorities.
The council's general aims are to promote equality of opportunity and non-discrimination,
to supply information on legislative initiatives in these areas and in the field of Universal
Design and to foster research, training, innovation, ethics and quality in the disability field.
Lastly, as required by the EU directives on the subject, it is now necessary to develop a
system of effective sanctions for breaches of these principles, so they are not just empty
statements. A "Bill on sanctions for infringing the rights of people with disabilities
concerning equality of opportunity, non-discrimination and universal accessibility" has
accordingly been drawn up.
This bill establishes common rules governing the offences and penalties applicable in cases
of direct or indirect discrimination, and possibly even harassment, or non-compliance with
the accessibility and positive action measures laid down by law.
206
The ultimate goal of all of these instruments is to ensure that people with disabilities have
access to the resources, both human and material, needed to guarantee their personal
autonomy and enjoyment of their rights.
207
PLENARY SESSION III
IMPLEMENTATION OF THE COUNCIL OF EUROPE DISABILITY
ACTION PLAN 2006-2015
Towards full social inclusion of people with disabilities
Mr Michael HANCOCK,
Representative of the Parliamentary Assembly
of the Council of Europe
United Kingdom
Report on Mr Hancock’s statement
Mr Hancock first conveyed his best wishes for success to the organisers on behalf of the
President of the Parliamentary Assembly. He recalled that the Parliamentary Assembly was,
together with the Committee of Ministers, one of the principal statutory organs of the
Council of Europe and, with parliamentary delegations from 46 national parliaments, the
largest European Parliamentary Assembly.
The Assembly was often called Europe’s democratic conscience and organises its work
through ten specialised committees, the Social, Health and Family Affairs Committee is one
of them. The Committee was in charge of considering matters relating to social welfare,
labour, public health, the family and vulnerable groups of the population. It considered in
particular ways of improving social cohesion within the member states and how to
strengthen the European social model as a basis for a stable and socially prosperous Europe.
The social aspects of employment policy were high on its agenda. They included those of
globalisation and appropriate framework conditions for social dialogue in the member
countries of the Council of Europe.
Moreover social policies affecting children, the elderly, people with disabilities, and ways
increasing solidarity between generations were of constant concern for the committee.
Finally questions relating to health, including the development of concerted European
health policies and the fight against drug trafficking and abuse as well as the new ethical
questions raised by biomedicine were also often on its agenda.
As regards in particular the question of disability the Social Affairs Committee had devoted
to it a report and recommendation on “towards full social inclusion of persons with
disabilities” in 2003. It was estimated that 80 to 120 million European citizens had a form of
disability, thus exceeding the population of almost every European state.
Some of the fundamental rights contained in the European Convention for the Protection of
Human Rights and Fundamental Freedoms, its Protocols, and in the Revised European
Social Charter were still inaccessible to many people with disabilities: the right to education;
the right to work; the right to private and family life; the right to protection of health and
social security; the right to protection against poverty and social exclusion; the right to
adequate housing, etc.
209
It had to be emphasised that the right to receive support and assistance - although essential
to improving the quality of life of people with disabilities - was not enough. Guaranteeing
access to equal political, social, economic and cultural rights should be a common political
objective for the next decade. Equal status, inclusion, full citizenship, and the right to choose
should be further promoted and implemented;
In Europe today we must stamp out discrimination so as to reap the benefits of diversity and
develop a more competitive and dynamic economy and society. By promoting equal
opportunities for all, we can tackle the structural barriers faced by many migrants, ethnic
minorities, people with disabilities, older and younger workers and other vulnerable
groups. The European Year in 2007 would seek to make people in Europe more aware of
their rights to enjoy equal treatment and a life free of discrimination. The principle of
equality and non-discrimination was part of the bedrock of fundamental rights on which the
Council of Europe was based.
The Council of Europe’s anti-discrimination legislation was one of the most ambitious and
far-reaching in the world but the laws had to be widely known, understood and fully
applied in order for them to have a real impact. Calling for equal rights and adopting laws
to try and guarantee this was not enough to ensure equal opportunities were available for
everyone in practice. Of course the Council’s action programmes to combat discrimination
can continue to provide support and help ensure that member states were complying with
the Recommendations and generally challenge discriminatory attitudes and behaviours. But
more incentives were needed if we were to bring about a change in behaviour and
mentality.
Moreover, the granting of rights, although necessary, is not sufficient. People with
disabilities, like all people, required love and affection which was most often best provided
by their family. Specific measures and assistance were therefore essential to help families
overcome the threat of multiple deprivation and provide a caring home as a much better
and more natural alternative to life in large scale institutions;
The Parliamentary Assembly was very interested in furthering interregional parliamentary
collaboration on disability legislation and in establishing a concrete dialogue with national
parliaments on this subject. Building up new networks of parliamentary cooperation around
disability issues could eventually lead towards greater equalisation of opportunities and
expanded participation for all members of society in the region.
It was also essential to formulate practical recommendations to national authorities in order
to promote good practices at national level and to increase co-operation with civil society.
During the conference many participants have stated that disability legislation was either
already in place or in the making; of course, as in any country, its translation into practice
depended on financial possibilities and, in this field especially, on a change in mentalities.
Experience showed that it was a long process. At any rate, during this meeting we had
received a great deal of information about the current state of the legislative process,
compliance with the basic internationally accepted standards and principles in the various
sectors, and most important a discussion on obstacles met when translating legislation into
practice.
Finally Mr Hancock conveyed a message of collaboration to the participants of the
Conference and stressed that the Council of Europe Disability Action Plan could represent
210
an appropriate tool for dialogue with parliamentarians and civil society. He also underlined
that the Social, Health and Family Affairs Committee of the Parliamentary Assembly could
usefully serve as a partner in this undertaking.
211
CONCLUSIONS AND CLOSING
Ms Viveca ARRHENIUS,
Chair elect (2006-2007) of the Committee on the Rehabilitation
and Integration of People with disabilities (CD-P-RR)
Ministerial Adviser
Ministry of Social Affairs and Health,
Finland
Abstract
The Committee of Ministers adopted in April 2006 a new Council of Europe Action Plan to
promote the rights and full participation of people with disabilities in Europe 2006-2015. The
Plan is based on the Malaga Ministerial Declaration “Progressing towards full participation
as citizens”, which was adopted in 2003.
The key objective of the Disability Action Plan is to serve as a practical tool for developing
and implementing national strategies in order to bring about full participation of persons
with disabilities and combat discrimination. A better quality of life of persons with
disabilities in Europe can be achieved by awareness-raising campaigns, providing accessible
and high-quality services and support and by mainstreaming disability throughout all
policy areas.
Member states have the primary responsibility for implementing disability policies at
national level. The first step is to carry out a national stocktaking exercise. In Finland the
government has already evaluated our present disability policy against the blueprint of the
Disability Action Plan as well as other relevant global disability documents. We identified
ten key areas in which progress has to be made. These areas concern amongst others human
rights and non-discrimination, employment, education, cultural rights, independent living
and information technology.
Secondly we need to build up knowledge and know-how at national level. Member states
need to collect appropriate information, including statistics and research data, to get a clear
picture of the present situation of persons with disabilities. Statistics and research will also
help to assess the effects of present policies and strategies and put up new goals for the
future.
The third prerequisite for carrying out a successful policy for persons with disabilities is to
ensure effective structures for co-operation. Governments should work side by side with
non-governmental organisations when implementing and assessing national disability
policies and strategies. One cannot stress the importance of co-operation enough.
Mainstreaming means that also the co-operation between different administrative sectors
needs to be understood and emphasized. A focal point is necessary to bear the ultimate
responsibility for coordinating disability policies at national level.
213
Follow-up and reporting back to the Council of Europe on the implementation of the Action
Plan complete the process. It is of utmost importance to have a forum for follow up and cooperation encompassing all 46 member states of the Council. We need a body for discussing
disability policies. We have so much to share and understand. Co-operation at international
level also gives concrete content and meaning to abstract disability concepts.
On behalf of Finland and as the incoming chair of the Council of Europe´s Committee on the
Rehabilitation and Integration of People with Disabilities I would like to thank the Council
of Europe for a future-oriented and modern disability programme. This programme helps us
to carry out the paradigm shift from patient to citizen and from a medical model to a human
rights based approach. I believe member states are committed to creating a better life for
persons with disabilities in Europe.
Presentation
Madame Chair, distinguished participants, Ladies and gentlemen.
The Committee of Ministers adopted in April 2006 a new Council of Europe Action Plan to
promote the rights and full participation of people with disabilities in Europe 2006-2015. The
Plan is based on the Malaga Ministerial Declaration “Progressing towards full participation
as citizens”, which was adopted in 2003.
The key objective of the Disability Action Plan is to serve as a practical tool for developing
and implementing national strategies in order to bring about full participation of persons
with disabilities and combat discrimination. A better quality of life of persons with
disabilities in Europe can be achieved by awareness raising campaigns, providing accessible
and high-quality services and support and by mainstreaming disability throughout all
policy areas.
Member states have the primary responsibility for implementing disability policies at
national level. The first step is to carry out a national stocktaking exercise. In Finland the
government has already evaluated our present disability policy against the blueprint of the
Disability Action Plan as well as other relevant global disability documents. We identified
ten key areas in which progress has to be made. These areas concern amongst others human
rights and non-discrimination, employment, education, cultural rights, independent living
and information technology. The relevant ministries are in charge of carrying out the actions
and including the necessary resources in their budgets.
Secondly we need to build up knowledge and know-how at national level. We need to
develop a multidisciplinary, holistic approach towards disability based on different
scientific methods and perspectives. Member states should collect appropriate information,
including statistics and research data, to get a clear picture of the present situation of
persons with disabilities. Also national seminars and conferences which highlight
experiences and best practices and promote the dialogue between users and planners could
form a good base for obtaining a common understanding of what should be the next steps.
Statistics and research will also help to assess the effects of present policies and strategies
and put up new goals for the future. We should be better at utilising research findings and
transforming them into good policies and practices.
The third prerequisite for carrying out a successful policy for persons with disabilities is to
ensure effective structures for co-operation and consultation. Governments should work
214
side by side with non-governmental organisations when implementing and assessing
national disability policies and strategies. One cannot stress the importance of co-operation
enough. Mainstreaming means that also the co-operation between different administrative
sectors needs to be understood and emphasised. A focal point is necessary to bear the
ultimate responsibility for co-ordinating disability policies at national level.
Follow-up and reporting back to the Council of Europe on the implementation of the Action
Plan complete the process. It is of utmost importance to have a forum for follow-up and cooperation encompassing all 46 member states of the Council as well as the NGO’s and other
relevant stakeholders. We need a body for concerted action on disability policies at
European level. We have so much to share and understand. Co-operation at international
level also gives concrete content and meaning to abstract disability concepts.
Madam Chair, We all live in a world that is becoming more global. For that reason disability
policies are not a matter of national interest only. Governments and non-governmental
organisations need to take an active part in international activities as well. The United
Nations has just completed a successful process in order to finalise a new Convention on the
rights of persons with disabilities. Never before have we witnessed such an in-depth and
profound dialogue between the governments and non-governmental organisations. The
slogan “Nothing about us without us” became a reality.
At this point I would like to take the opportunity to thank the Nordic Council of Ministers
and the Norwegian Presidency for co-financing this Conference. Co-operation between the
governments of Finland, Sweden, Norway, Denmark and Iceland and the autonomous
territories of Åland, Greenland and the Faroe Islands has long traditions. Since the 1980s a
body for Nordic Co-operation on Disability has been in operation. Welfare research and the
so-called Nordic model have been key issues for the governmental co-operation. Next year
Finland will take over the Presidency of the Nordic co-operation. The main focus for the
Finnish Presidency within the social and health sector will be on children, older persons and
persons with disabilities. Finland will organise a Conference on Disability and Ageing in
order to prepare for the coming demographic change.
On behalf of Finland and as the incoming chair of the Council of Europe’s Committee on the
Rehabilitation and Integration of People with Disabilities, I would like to thank the Council
of Europe for a future-oriented and modern disability programme. This programme helps us
to carry out the paradigm shift from patient to citizen and from a medical model to a human
rights based approach. I believe member states are committed to creating a better life for
persons with disabilities in Europe.
215
Closing
Mr Alexander VLADYCHENKO
Director General for Social Cohesion,
Council of Europe
Distinguished Chairman, Dear Participants,
We are almost at the end of what I would call a very successful launching conference for the
Council of Europe Disability Action Plan, which you have all actively contributed to, so
consequently, it gives me great pleasure to draw the conclusions from such a positive event
and experience.
It gives me even greater pleasure to, first of all, thank Mr Zourabov, and Minister of Health
and Social Development the Russian authorities not only for hosting and organising this
conference but also for making it one of the priorities during the Russian Federation
Chairmanship of the Committee of Ministers of the Council of Europe.
Equally, and wholeheartedly, I would like to thank Ms Gustavsen, State Secretary of
Employment and Social Inclusion and the Norwegian authorities for co-organising and
generously supporting this event.
Last but not least my thanks go to you, Ms Kostkina, Vice-Governor of St Petersburg, and
the local organising committee, for welcoming us such historic and beautiful places such as
St Petersburg and Pushkin.
In my professional life I attend many conferences, and at every one of them I ask myself
three questions:
1.
2.
3.
What have we learned from the Conference?
What have we achieved with the Conference?
What do we do after the Conference?
Concerning this Conference I would propose the following answers.
1. What have we learned from the Conference?
We have learned that the “Council of Europe Action Plan to promote the rights and full
participation in society of people with disabilities: improving the quality of life of people
with disabilities in Europe 2006-2015” was adopted by the Committee of Ministers in April
this year, having been called for by the Malaga Ministerial Conference on Disability in 2003
and having been endorsed by the Council of Europe Warsaw Summit of Heads of State and
Government in 2005.
We have learned that the Disability Action Plan aims to translate the Council of Europe’s
basic principles concerning the human rights, equal opportunities, independent living, full
citizenship and active participation of people with disabilities into specific objectives and
practical action lines as well as detailed action points to achieve those objectives, advancing
216
the paradigm shift from a medial to a social and human rights-based approach to disability,
in short: from the patient to the citizen.
We have learned that the Action Plan provides a flexible framework that can and should be
adapted to every country, taking account of its specific conditions, to provide political
decision-makers with a tailor-made roadmap for innovative disability legislation, policy and
practice.
We have learned that all member states of the Council of Europe, and that means
46 European states, are responsible for the implementation and follow-up of the Disability
Action Plan at national level over the next ten years, to be carried out in close co-operation
with non-governmental organisations of and for people with disabilities.
2. What have we achieved with the Conference?
Obviously, learning in itself can be considered a major achievement in its own right, so
everything I have just mentioned under the previous point could also be included in this
paragraph.
However, here I am more particularly thinking of the Conference Declaration you are
invited to adopt as the next item on the programme.
The Declaration contains recommendations to governments on their future disability
policies, some of a more general, others of a more specific nature.
The text of the Declaration is based on the blueprint of the Council of Europe Disability
Action Plan and refers to key principles, such as:
•
•
•
access to human rights, equal opportunities and non-discrimination as a way to help
ensure democracy and social cohesion,
promotion of the role of the family in the social rehabilitation and integration of
children and adults with disabilities into their local communities and society as a
whole,
responsibility of member states for the implementation and follow-up of the Disability
Action Plan in co-operation and partnership with all public bodies, social partners and
disabled peoples’ organisations.
The Declaration emanates from this conference and was elaborated with your active
participation. Very shortly you will be invited to adopt it officially. I would regard that text
and the political commitment which it signifies as a major result of this Conference.
3. What do we do after the Conference?
So where do we go from here?
Political commitment made by the Council of Europe Disability Action Plan 2006-2015 and
the Final Declaration of this Conference will need to be put into action.
217
The way from policy to practice consists of three phases:
1. Promotion
2. Implementation
3. Follow-up.
The promotion phase includes the translation of the Council of Europe Disability Action
Plan into national languages, which, according to the Action Plan, is the responsibility of the
member states, and the organisation of awareness-raising activities and media campaigns.
The implementation phase should see the move from words to deeds and that is the primary
responsibility of member states, as is the follow-up at national level.
In very concrete terms, member states should start by evaluating existing disability
legislation and policy against the blueprint of the Council of Europe Disability Action Plan,
then identify areas in which progress has yet to be made and the specific actions to be
carried out.
Concerning the follow-up at international level, I am pleased to inform you that on
13 September 2006 the Committee of Ministers of the Council of Europe adopted the terms
of reference of the European Co-ordination Forum on the Council of Europe Disability
Action Plan 2006-2015 (CAHPAH) as from 1 January 2007.
The Forum will meet once a year and become a real pan-European structure to oversee the
promotion, implementation and follow-up of the Disability Action Plan, as it is open to all
Council of Europe member and observer states, many Council of Europe bodies and
Steering Committees, such as the Human Rights Commissioner, the Parliamentary
Assembly, the Congress of Local and Regional Authorities, the Development Bank. The
European Commission can attend, as well as several international organisations, both
governmental, such the UN, UNESCO, UNICEF, UNDP, WHO, ILO, OECD, and nongovernmental, such as the European Disability Forum (EDF) representing people with
disabilities and their organisations.
The Secretariat of the Co-ordination Forum will be secured by members of my Directorate
General of Social Cohesion.
This Conference is a timely initiative. Launching the Council of Europe Disability Action
Plan takes place shortly after the United Nations Ad Hoc Committee adopted the draft
Disability Convention. As the Council of Europe contributed to that process I wish to
strengthen co-operation between our two organisations in the field of disability.
I am confident that the Council of Europe Disability Action Plan will play a vital role in the
implementation of the UN Convention in the European region: it could become a European
regional implementation tool, an operational instrument to help member states in meeting
their commitments vis-à-vis the world community. The Co-ordination Forum could support
that process thanks to its pan-European composition and involvement of key Council of
Europe bodies and institutions.
As I noted with pleasure the successful co-operation between the Council of Europe and the
Nordic Council of Ministers under its current Norwegian Presidency in organising this
218
Conference, I would like to express my hope for a continuation of that co-operation also
under other future presidencies of the Nordic Council of Ministers.
So let me close with an invitation to promote and implement the Council of Europe
Disability Action Plan and to participate in the Co-ordination Forum for the sake of
improving the quality of life of people with disabilities in Europe.
Thank you.
219
APPENDIX 1
ST PETERSBURG DECLARATION
“Improving the quality of life
of people with disabilities in Europe:
participation for all, innovation, effectiveness”
St Petersburg, Russian Federation, 22 September 2006
1. We, the Ministers of the Russian Federation and Norway representing the authorities
responsible for integration policies for people with disabilities, gathered with
representatives of Council of Europe member states, including Nordic Council of Minister’s
member states, and representatives of the Council of Europe’s Committee on the
Rehabilitation and Integration of People with disabilities and its subordinate bodies, of
observer states, as well as international organisations and NGOs, met in St Petersburg,
Russia on 21 – 22 September to launch the Council of Europe Disability Action Plan 2006 –
2015 which aims to improve the quality of life, inclusion and active participation of people
with disabilities in society, and to strengthen equal opportunities and non-discrimination;
2. Taking due account of relevant existing European and international instruments, treaties
and plans, particularly the Convention for the Protection of Human Rights and
Fundamental Freedoms (ETS No. 5); the revised European Social Charter (ETS No. 163), and
the developments in relation to the draft United Nations international convention on the
rights of persons with disabilities;
3. Following the Political Declaration adopted at the Second European Conference of
Ministers responsible for integration policies for people with disabilities “Improving the
quality of life of people with disabilities: enhancing a coherent policy for and through full
participation”, which took place in Malaga, Spain in May 2003, we fully share the
fundamental principles and strategic goals of the Council of Europe Disability Action Plan
2006-2015 aimed at strengthening the efforts and commitment of member states to work
within anti-discriminatory and human rights frameworks to enhance independence,
freedom of choice and the quality of life of people with disabilities and to raise awareness of
disability as a part of human diversity;
4. Having regard to the Action Plan of the Third Summit of Heads of State and Government
of the Council of Europe (CM(2005)80 final), adopted in Warsaw on 17 May 2005, which lays
down the role and main responsibilities of the Council of Europe in the coming years and
acknowledging the work carried out by the Council of Europe Committee on the
Rehabilitation and Integration of People with disabilities (CD-P-RR) in the drafting of this
Disability Action Plan;
5. Aware of the major political, economic, social and technological changes which have
taken place in Europe, such as the opportunities and challenges of globalisation, the
development of information and communication technologies, the changing patterns of
employment and unemployment, health and demography, migration, and the transition to
market economies which are transforming our continent;
221
6. Realising that many of these changes have been positive and have consequently raised
people’s hopes and expectations, particular attention needs to be taken to ensure access to
human rights for people who are at risk of becoming vulnerable and who face specific
barriers or experience two fold discrimination, such as women and girls with disabilities,
people with disabilities in need of a high level of support, children and young people with
disabilities, ageing people with disabilities and people with disabilities from minorities and
migrant communities;
7. Bearing in mind the fundamental shift taking place in our society, away from seeing
people with disabilities person as a patient in need of care who does not contribute to
society to seeing him/her as a person who needs the present barriers removed in order to
take a rightful place as a fully participative member of society. We therefore need to further
facilitate the paradigm shift from the medical model of disability to the social and human
rights based model in order to eliminate such barriers which may be attitudinal, social, legal
and/or environmental;
8. Considering that the estimated proportion of persons with disabilities in the total
population in Europe is 10-15%, that the main causes of disability are disease, accidents and
disabling conditions among the elderly, and that the number of disabled people is expected
to grow steadily due to increasing life expectancy, inter alia;
9. Considering that ensuring equal opportunities for members of all groups in society
contributes to securing democracy and social cohesion;
10. Convinced that the human rights-based approach to ensuring the integration and full
participation of people with disabilities in society should be incorporated in all relevant
policy areas at international, national, regional and local levels;
11. Acknowledging the Council of Europe Disability Action Plan with its specific actions and
objectives as a comprehensive framework that is both flexible and adaptable in order to meet
country-specific conditions, it will serve as an innovative and efficient roadmap for policy
makers, to enable them to design, adjust, refocus and implement appropriate plans,
programmes and strategies;
12. Reaffirming that member states have primary responsibility for implementing disability
policies at national level and, in particular, for implementing the specific actions referring to
them under each action line. Member states should start by an evaluation of existing policies
and underlying basic principles against the blueprint of the Disability Action Plan, to
identify in which areas progress has yet to be made and which specific actions have to be
carried out;
13. Recognising that a better quality of life for people with disabilities can only be reached
through co-operation of public bodies (national, regional and local) with social partners;
14. Emphasising the importance of private enterprises in creating decent living conditions
for people with disabilities and ensuring their full participation in society through the
development of the informal sector, the financing of socially important programmes and
projects aimed at improving the well-being of people with disabilities and the provision of
support to NGOs dealing with their rehabilitation;
222
15. Emphasising the importance of seeking joint approaches and establishing partnerships
with non-governmental organisations of people with disabilities in order to promote good
practices at national level and to increase co-operation with civil society in the
implementation and follow-up of the Council of Europe Disability Action Plan;
16. Having in mind the need to promote the role of families with persons with disabilities,
including children, in the process of their socialisation, integration and social rehabilitation;
17. Request the Committee of Ministers of the Council of Europe to reinforce co-operation
with all relevant international institutions and organisations, such as the European Union
and relevant UN bodies and the Nordic Council of Ministers, with the aim of creating
concerted actions;
18. Recommend that the governments of the member states having due regard to their
specific national, regional or local structures and respective responsibilities:
a. integrate as appropriate in their policy, legislation and practice the principles and
implement the actions set out in the Council of Europe Action Plan to promote the rights
and full participation of people with disabilities in society: improving the quality of life of
people with disabilities in Europe 2006-2015;
b. promote the implementation and application of the Council of Europe Disability Action
Plan 2006-2015 in areas which are not the direct responsibility of public authorities, but
where they nonetheless have a certain power or may play a certain role;
c. assure to this end the widest possible dissemination of this recommendation amongst all
parties concerned, for example through awareness-raising campaigns and co-operation with
the private sector and civil society, involving, in particular, non-governmental organisations
of people with disabilities;
19. Recommend that all relevant bodies and committees of the Council of Europe adopt a coordinated, strategic approach to ensuring that the implementation of the Disability Action
Plan will be monitored and regularly evaluated to identify progress at national level as well
as to share good practices, with the aim of making this Action Plan a major European policy
framework on disability for the next decade.
20. The following specific recommendations were developed in the workshops of the
Conference:
a) Workshop 1: “Integration of people with disabilities, including children, into society”
Recommends
that
countries
move
gradually
but
purposefully
towards
deinstitutionalisation, with an urgent focus on the needs of children, and take steps to
facilitate the inclusion of all children with disabilities and adults in mainstream service
provision and in valued roles within their communities through Universal Design and
participation in activities that enhance their visibility and status, such as their involvement
in the arts, music, culture and politics, and in sports at local and competitive level, noting
the role that the Paralympics and Special Olympics movements, among others, have played
as an inspiration to disabled athletes.
223
b) Workshop 2: “Education, vocational training and employment of people with
disabilities”
Education, vocational training and employment help to develop the person’s potential and
their individual abilities and open up for persons with disabilities new avenues and
dimensions for participation. Therefore, all disabled persons should get the best individual
support in these fields.
Work towards inclusive schooling with adapted teaching should be an overall goal for each
country’s policy. Securing the opportunity for pupils to attend their local schools and thus
the possibility of living within their families should be a priority.
The starting point for an inclusive working life must be a commitment that everybody
should be considered for work without discrimination. Governments have a special
responsibility for creating positive conditions in the way that working life is organised and
as an employer themselves. All employers should be aware of their responsibility to employ
disabled persons without discrimination.
c) Workshop 3: “Role of public authorities in promoting equal opportunities and full
participation of people with disabilities”
The state authorities must provide people with disabilities with the necessary conditions for
their equal participation in life in society. The domestic legislation of Council of Europe
member states should prohibit discrimination against people with disabilities and guarantee
them the full spectrum of political, social, economic, cultural and civil rights enjoyed by all
members of society. We recommend that steps be taken to secure - at national, regional and
local levels - interaction between all branches of authority and state administration
structures in the different spheres, their social partnership and ongoing dialogue with NGOs
with a view to improving the standard and quality of life of people with disabilities,
integrating them in social, working and everyday life and giving them access to the social,
information and production infrastructure.
224
APPENDIX 2
COUNCIL OF EUROPE DISABILITY ACTION PLAN 2006-2015
COUNCIL OF EUROPE
COMMITTEE OF MINISTERS
Recommendation Rec(2006)5
of the Committee of Ministers to member states
on the Council of Europe Action Plan to promote the rights and full participation of
people with disabilities in society: improving the quality of life of people with
disabilities in Europe 2006-2015
(Adopted by the Committee of Ministers on 5 April 2006
at the 961st meeting of the Ministers’ Deputies)
The Committee of Ministers,
Recalling Resolution (59) 23 of 16 November 1959, on the extension of the activities of the
Council of Europe in the social and cultural fields;
Having regard to Resolution (96) 35 of 2 October 1996 revising the Partial Agreement in the
Social and Public Health Field, whereby it revised the structures of the Partial Agreement,
and resolved to continue, on the basis of revised rules replacing those set out in Resolution
(59) 23, the activities hitherto carried out and developed by virtue of that Resolution, aimed
at, inter alia, integrating people with disabilities into the community with a view to defining
and contributing to the implementation at European level of a model coherent policy for
people with disabilities, based on the principles of full citizenship and independent living,
implying the elimination of barriers to integration, whatever their nature, whether
psychological, educational, family-related, cultural, social, professional, financial or
architectural;
Considering that the aim of the Council of Europe is to achieve greater unity between its
members and that this aim may be pursued, inter alia, by the adoption of common rules in
the disability policy field for the purpose of promoting the protection of political, civil,
social, cultural and educational rights;
Bearing in mind the Convention for the Protection of Human Rights and Fundamental
Freedoms (ETS No. 5);
Bearing in mind the principles embodied in the revised European Social Charter (ETS
No. 163), namely the right of persons with disabilities to independence, social integration
and participation in the life of the community;
Having regard to the United Nations Standard Rules on the Equalisation of Opportunities
for Persons with Disabilities, 1993;
Having regard to the International Classification of Functioning, Disability and Health (ICF)
of the World Health Organisation (WHO), 2001;
225
Having regard to the Convention concerning Vocational Rehabilitation and Employment
(Disabled Persons) of the International Labour Organisation (ILO) (No. C159), 1983, and the
corresponding ILO Recommendation on Vocational Rehabilitation and Employment
(Disabled Persons) (No. R168), 1983;
Having regard to Recommendation No. R (92) 6 of the Committee of Ministers to member
states on a coherent policy for people with disabilities;
Having regard to the Ministerial Declaration on People with Disabilities “Progressing
towards full participation as citizens”, adopted at the Second European Conference of
Ministers responsible for integration policies for people with disabilities held in Malaga
(Spain) on 7 and 8 May 2003;
Having regard to the Action Plan of the Third Summit of Heads of State and Government of
the Council of Europe (CM(2005)80 final), adopted in Warsaw on 17 May 2005, which lays
down the role and main responsibilities of the Council of Europe in the coming years;
Having regard to Recommendation 1592 (2003) by the Council of Europe Parliamentary
Assembly “Towards full social inclusion of people with disabilities”;
Reaffirming the universality, indivisibility and interdependence of all human rights and
fundamental freedoms and the need for people with disabilities to be guaranteed their full
enjoyment without any discrimination;
Considering that the estimated proportion of persons with disabilities in the total population
in Europe is 10-15%, that the main causes of disability are disease, accidents and disabling
conditions among the elderly, and that the number of disabled people is expected to grow
steadily due to increasing life expectancy, inter alia;
Considering that failure to promote the rights of citizens with disabilities and to ensure
equality of opportunities is a violation of human dignity;
Considering that ensuring equal opportunities for members of all groups in society
contributes to securing democracy and social cohesion;
Convinced that the human rights based approach to ensuring the integration and full
participation of people with disabilities in society should be incorporated in all relevant
policy areas at international, national, regional and local level;
Emphasising the need to mainstream disability issues in all sectors through coherent policies
and co-ordinated action;
Acknowledging the work carried out by the Council of Europe Committee on the
Rehabilitation and Integration of People with disabilities (CD-P-RR) in the drafting of this
Disability Action Plan;
Emphasising the importance of establishing partnerships with non-governmental
organisations of people with disabilities in the implementation and follow-up of the
Disability Action Plan,
226
Recommends that the governments of the member states having due regard to their specific
national, regional or local structures and respective responsibilities:
a.
integrate as appropriate in their policy, legislation and practice the principles and
implement the actions set out in the Council of Europe Action Plan to promote the rights
and full participation of people with disabilities in society: improving the quality of life of
people with disabilities in Europe 2006-2015, as it appears in the appendix to this
recommendation;
b.
promote the implementation and application of the Council of Europe Disability
Action Plan 2006-2015 in areas which are not the direct responsibility of public authorities,
but where they nonetheless have a certain power or may play a certain role;
c.
assure to this end the widest possible dissemination of this recommendation
amongst all parties concerned, for example through awareness-raising campaigns and cooperation with the private sector and civil society, involving, in particular, nongovernmental organisations of people with disabilities.
227
Appendix to Recommendation Rec(2006)5
Council of Europe Action Plan
to promote the rights and full participation of people with disabilities in society:
improving the quality of life of people with disabilities in Europe 2006-2015
Contents
1.
Executive Summary
2.
Introduction
3.
Key action lines
3.1.
3.2.
3.3.
3.4.
3.5.
3.6.
3.7.
3.8.
3.9.
3.10.
3.11.
3.12.
3.13.
3.14.
3.15.
4.
Participation in cultural life
Information and communication
Education
Employment, vocational guidance
The built environment
Transport
Community living
Health care
Rehabilitation
Social protection
Legal protection
Protection against violence and
Research and development
Awareness-raising
Introduction
Women and girls with disabilities
People with disabilities in need of high level of support
Children and young people with disabilities
Ageing of people with disabilities
People with disabilities from minorities and migrants
Implementation and follow-up
5.1.
5.2.
5.3.
228
Participation in political and
4.1.
4.2.
4.3.
4.4.
4.5.
4.6.
5.
Action line No. 1:
public life
Action line No. 2:
Action line No. 3:
Action line No. 4:
Action line No. 5:
and training
Action line No. 6:
Action line No. 7:
Action line No. 8:
Action line No. 9:
Action line No. 10:
Action line No. 11:
Action line No. 12:
Action line No. 13:
abuse
Action line No. 14:
Action line No. 15:
Introduction
Implementation
Follow-up
Appendix 1
Malaga Ministerial Declaration on People with Disabilities “Progressing
towards full participation as citizens”, adopted at the Second European
Conference of Ministers responsible for integration policies for people with
disabilities, Malaga (Spain), 7-8 May 2003
Appendix 2
Reference texts
229
1.
Executive Summary
1.1.
Mission
1.1.1.
Malaga Ministerial Declaration on People with disabilities
In 1992, following the first European Conference of Ministers responsible for policies on
people with disabilities, Recommendation No. R (92) 6 on a coherent policy for people with
disabilities was adopted by the Committee of Ministers.
This pioneering recommendation influenced disability policies for more than ten years and
prompted new inclusive policy plans that have positively benefited people with disabilities
both nationally and internationally.
However, major changes have taken place in society and new strategies are needed to
further progress a social and human rights based approach to disability issues in the next
decade.
In May 2003 at the Second European Ministerial Conference, which took place in Malaga,
Spain, the Ministers responsible for policies on people with disabilities adopted the Malaga
Ministerial Declaration on People with disabilities “Progressing towards full participation as
citizens”.
An appropriate strategy was set out to elaborate a Council of Europe Disability Action Plan
aimed at promoting human rights and improving of the quality of life of people with
disabilities in Europe.
1.1.2.
Mission statement
The Council of Europe Disability Action Plan 2006-2015 seeks to translate the aims of the
Council of Europe with regard to human rights, non-discrimination, equal opportunities,
full citizenship and participation of people with disabilities into a European policy
framework on disability for the next decade.
This Action Plan aims to provide a comprehensive framework that is both flexible and
adaptable in order to meet country-specific conditions. It is intended to serve as a roadmap
for policy makers, to enable them to design, adjust, refocus and implement appropriate
plans, programmes and innovative strategies.
The Council of Europe will seek to implement the Disability Action Plan by providing
assistance to all member states in the form of recommendations, advice and expert
information.
1.2.
Fundamental principles and strategic goals
1.2.1.
Fundamental principles
Member states will continue to work within anti-discriminatory and human rights
frameworks to enhance independence, freedom of choice and the quality of life of people
with disabilities and to raise awareness of disability as a part of human diversity.
230
Due account is taken of relevant existing European and international instruments, treaties
and plans, particularly the developments in relation to the draft United Nations
international convention on the rights of persons with disabilities.
The Council of Europe’s New Strategy for Social Cohesion (2004) points out that there has to
be particular commitment to ensure access to human rights for people who are at risk of
becoming vulnerable, such as children and young people, migrants and ethnic minorities,
people with disabilities and the elderly.
The Disability Action Plan acknowledges the basic principle that society has a duty towards
all its citizens to ensure that the effects of disability are minimised through actively
supporting healthy lifestyles, safer environments, adequate health care, rehabilitation and
supportive communities.
1.2.2.
Strategic goals
The key objective of the Disability Action Plan is to serve as a practical tool to develop and
implement viable strategies to bring about full participation of people with disabilities in
society and ultimately mainstreaming disability throughout all the policy areas of the
member states. The Action Plan aims at meeting country-specific conditions as well as
transition processes that are taking place in various member states.
It comprises recommendations to take specific actions at national level and also illuminates
aspects of vulnerable groups of people with disabilities who face specific barriers and
problems that require a cross-cutting response.
It encourages member states to respond to the needs of people with disabilities by providing
quality and innovative services and consolidating measures already in place.
The Action Plan seeks to provide a useful source of inspiration for private enterprise, nongovernmental organisations and other international organisations. It considers nongovernmental organisations of people with disabilities to be competent and expert partners
in policy development, who should be consulted as stakeholders in decision-making
processes which affect their lives. The implementation of the Action Plan will be monitored
and regularly evaluated to identify progress at national level as well as to share good
practices.
1.3.
Key action lines
The Council of Europe Disability Action Plan has a broad scope, encompassing all key areas
of the life of people with disabilities. These key areas are duly reflected in 15 action lines
which set out key objectives and specific actions to be implemented by member states.
The action lines are the core of the Action Plan. They cover the following areas:
–
–
–
–
–
–
No. 1:
No. 2:
No. 3:
No. 4:
No. 5:
No. 6:
Participation in political and public life;
Participation in cultural life;
Information and communication;
Education;
Employment, vocational guidance and training;
The built environment;
231
–
–
–
–
–
–
–
–
–
No. 7:
No. 8:
No. 9:
No. 10:
No. 11:
No. 12:
No. 13:
No. 14:
No. 15:
Transport;
Community living;
Health care;
Rehabilitation;
Social protection;
Legal protection;
Protection against violence and abuse;
Research and development; and
Awareness-raising.
Participation in political and public life (No. 1) and democratic processes is essential for the
development and maintenance of democratic societies. People with disabilities should have
the opportunity to influence the destiny of their communities. It is therefore important that
people with disabilities be able to exercise their right to vote and participate in political and
public activities.
To be fully integrated into society, people with disabilities should also be able to participate
in the cultural life (No. 2) of that society. Appropriate measures should be taken to ensure
that people with disabilities can participate in cultural activities and associations and can
develop and utilise their creative and intellectual potential for their own benefit and that of
their communities.
In this regard, access to information and communication (No. 3) is a prerequisite. It is
important that public and private providers of information and communication take the
needs of people with disabilities into account. Appropriate measures should be taken to
ensure that people with disabilities can receive and impart information on an equal footing
with other members of society.
Equal access to education (No. 4) is a fundamental requirement for ensuring social inclusion
as well as independence for people with disabilities. Education should cover all life stages
from pre-school education to professional education, as well as life-long learning.
Mainstream education and specialised programmes, as appropriate, should be encouraged
to work together to support people with disabilities in their local communities. A
mainstream approach can also contribute to non-disabled people’s awareness and
understanding of human diversity.
Employment, vocational guidance and training (No. 5) are key factors for the social
inclusion and economic independence of people with disabilities. Legislation, measures and
services are needed to ensure equality of opportunity for disabled people in obtaining and
retaining a job. Equal access to employment should be enhanced by combining antidiscrimination and positive action measures and by mainstreaming issues related to the
employment of people with disabilities in employment policies.
An accessible, barrier-free built environment (No. 6) encourages equal opportunities,
independent living, active involvement in the community and access to employment. By
applying the principles of Universal Design an environment that is accessible to people with
disabilities can be established and the creation of new barriers can be avoided.
The development and implementation of accessible transport (No. 7) at all levels should
result in a substantial improvement of the accessibility of passenger transport services for all
232
people with disabilities. This is a prerequisite to achieving independence, full participation
in the labour market and active participation in the community.
People with disabilities should be able to live as independently as possible, including being
able to choose where and how to live. Opportunities for independent living and social
inclusion are first and foremost created by living in the community. Enhancing community
living (No. 8) requires strategic policies which support the move from institutional care to
community-based settings, ranging from independent living arrangements to sheltered,
supportive living in small-scale settings. It also implies a co-ordinated approach in the
provision of user-driven, community-based services and person-centred support structures.
Disabled people, like non-disabled people, require adequate health care (No. 9) and should
have equal access to good quality health care services that are respectful of clients’ rights. In
this regard it is important that health care professionals (be trained to) focus more on the
social model of disability.
To prevent the deterioration of disability, alleviate its consequences and enhance
independence of people with disabilities, comprehensive rehabilitation (No. 10)
programmes that include an array of accessible, and, where appropriate, community-based
services, should be implemented.
Services provided by the social protection (No. 11) system – including social security, social
assistance and support – can contribute to the quality of life of their recipients. People with
disabilities should be able to adequately benefit from social protection systems and have
equal access to these services. Policies encouraging a shift from benefit dependency towards
employment and independence should be promoted, where possible.
People with disabilities should have access to the legal system on the same basis as other
citizens. Legal protection (No. 12) entails taking appropriate measures to eliminate
discrimination against people with disabilities. An adequate legal and administrative
framework is necessary to prevent and combat discrimination.
Society also has a duty to prevent and protect people against acts of abuse and violence
(No. 13). Policies should be aimed at safeguarding people with disabilities against all forms
of abuse and violence and ensure appropriate support for victims of abuse and violence.
Research and development (No. 14), statistical data collection and analysis are essential to
design and implement well-informed and evidence-based policies. Reliable information is
helpful in order to identify emerging issues and helps to design solutions. It is also
important to identify best practices and to monitor change in society.
Awareness-raising (No. 15) is a key issue that underpins the whole Action Plan.
Discriminatory behaviour and stigmatisation should be opposed and replaced by accessible
and objective information on the consequences of impairments and disabilities in order to
promote a better understanding of the needs and rights of people with disabilities in society.
Action should be aimed at changing negative attitudes towards people with disabilities and
should promote mainstreaming of disability issues in all government publications as well as
publications of the media.
233
1.4.
barriers or experience twofold discrimination.
Women and girls with disabilities, people with disabilities in need of a high level of support,
children and young people with disabilities, ageing people with disabilities and people with
disabilities from minorities and migrant communities have a higher risk of exclusion and
generally have lower levels of participation in society than other disabled people.
Women and girls with disabilities often face multiple obstacles to participation in society
due to discrimination on grounds of both gender and disability. The specific situation of
women and girls needs to be taken into account in the development of both disability and
gender mainstream policies and programmes at all levels.
One of the more vulnerable groups of people with disabilities is the group of people who,
due to the severity and complexity of their disability, are in need of a high level of support.
Their quality of life is very much dependent on the availability of appropriate quality
services and specific, often intensive support. Planning and co-ordination across relevant
authorities, government agencies and service providers are needed to adequately address
the specific problems of this group of people.
Children with disabilities should enjoy the same rights – as laid down in the United Nations
Convention on the Rights of the Child – and opportunities as other children. Young people
with disabilities are also a vulnerable group in our society. They still face considerable
barriers in accessing all aspects of life. The specific problems faced by children and young
people with disabilities must be studied in greater depth in order to design and implement
well informed policies across a wide spectrum of policy areas.
The progressive ageing of people with disabilities, particularly of those requiring more
intensive support, presents new challenges for societies across Europe. Innovative
approaches are required to meet these challenges across a wide range of policy and service
areas.
People with disabilities from minorities and migrant communities may experience multiple
disadvantages because of discrimination or lack of familiarity with public services. A
comprehensive approach, taking account of cultural background, language and particular
needs, is required to address specific problems these groups may face.
The above-mentioned specific groups of people with disabilities require a cross-cutting
response to ensure their inclusion in society. Policy makers need to acknowledge the barriers
and challenges faced by each of these groups and ensure that policies include actions that
cut across many key action lines to remove those barriers and ensure that individuals can
reach their full potential. A twin-track approach, departing from this Action Plan and the
Council of Europe’s New Strategy for Social Cohesion (2004), is needed to promote the
development of effective cross-cutting and integrated policies.
1.5.
In line with the fundamental principles underpinning the action lines and the cross-cutting
aspects, Universal Design principles, quality, training and mainstreaming are vital elements
234
of the implementation strategy of the Disability Action Plan. The application of Universal
Design principles is of paramount importance for improving the accessibility of the
environment and the usability of products. It is also essential that all policies, actions and
services be underpinned by high standards in terms of quality. A mainstream approach in
policy development and service delivery plays an important role in promoting a more
inclusive society.
Member states have primary responsibility for implementing disability policies at national
level and in particular for implementing the specific actions referring to them under each
action line. Member states should start by an evaluation of existing policies and underlying
basic principles against the blueprint of the Disability Action Plan, to identify in which areas
progress has yet to be made and which specific actions have to be carried out.
Based on that evaluation, member states should set up strategies aimed at bringing their
policies progressively in line with the recommendations and underlying basic principles of
the Disability Action Plan, within the framework of national financial resources.
Member states should seek joint approaches and establish partnerships with relevant
stakeholders, in particular with non-governmental organisations of people with disabilities,
in the implementation and evaluation of the Disability Action Plan.
All relevant bodies and committees of the Council of Europe have been consulted to ensure
an increased awareness and implementation of the Disability Action Plan.
The Committee of Ministers will designate an appropriate forum to manage the follow-up
process and could recommend that member states analyse specific priority issues in depth.
Effective follow-up to the Disability Action Plan requires member states to provide the
designated forum with relevant information on a regular basis.
The designated forum will ensure that the Committee of Ministers is regularly informed
about the progress made in the implementation of the Disability Action Plan.
2.
Introduction
2.1.
Mission
The Action Plan seeks to translate the aims of the Council of Europe with regard to human
rights, non-discrimination, equal opportunities, full citizenship and the participation of
people with disabilities into a European framework on disability for the next decade.
This Action Plan aims to provide a comprehensive framework that is both flexible and
adaptable in order to meet country-specific conditions. It is intended to serve as a roadmap
for policy makers, to enable them to design, adjust, refocus and implement appropriate
plans, programmes and innovative strategies.
The Council of Europe will seek to implement the Action Plan by providing positive
assistance to all member states in the form of recommendations, advice and expert
information.
235
2.2.
Paradigm shift from patient to citizen
The last decade has seen major political, economic, social and technological changes in
Europe. The opportunities and challenges of globalisation, the development of information
and communication technology, changing patterns of employment and unemployment,
health and demography, migration, and the transition to market economies are transforming
the region. Many of these changes have been positive and have consequently raised people’s
hopes and expectations.
We have moved from seeing the disabled person as a patient in need of care who does not
contribute to society to seeing him/her as a person who needs the present barriers removed
in order to take a rightful place as a fully participative member of society. Such barriers
include attitudes and social, legal and environmental barriers. We therefore need to further
facilitate the paradigm shift from the old medical model of disability to the social and
human rights based model.
We have shifted our focus to the individual as central to a coherent, integrated approach
which respects the human rights, fundamental freedoms and dignity of all disabled
individuals. Consequently there has been a shift in many European countries to promote
active policies which empower the individual disabled person to control his/her life. At the
same time the role of non-governmental organisations in general, and in particular of those
of people with disabilities, in society has changed. They have become partners for
governments and disabled people alike, as advocates, service providers or as a source of
expert knowledge and competence.
The Action Plan is designed to be flexible to take account of future technological change and
other developments.
Recent developments in the field of biotechnology and its potential use have created
concerns amongst disabled people, to the point that even the right to life is sometimes in
question. This plan deals with the full social inclusion and participation of disabled people
and therefore it has not been considered appropriate to include such medically related issues
as prenatal diagnosis and discrimination in abortion laws on the basis of disability.
However, there is no doubt about the importance of these issues and it is considered vital to
ensure that disabled people, through their representative organisations, participate in the
relevant national and international ethics and bio-ethics committees dealing with these
matters.
2.3.
The Malaga Ministerial Declaration
The Second European Conference of Ministers responsible for integration policies for people
with disabilities, held in Malaga (Spain) on 7 and 8 May 2003, wished to build on the First
European Conference of Ministers, which took place in 1991 and resulted in the Committee
of Ministers’ Recommendation No. R (92) 6 on a coherent policy for people with disabilities.
This recommendation, adopted on 9 April 1992, influenced the disability policies of Council
of Europe member states for more than ten years and prompted inclusive policies which
have positively benefited disabled people both nationally and internationally. However, the
ministers recognised that further work is needed to progress on disability issues in a
changed environment.
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In the Malaga Ministerial Declaration, entitled “Progressing towards full participation as
citizens”, adopted at the conference, the ministers considered that their main aim in the next
decade is to further improve the quality of life of people with disabilities and their families.
A new strategy is needed to reflect the social model of disability and both the higher
expectations of disabled people and of society.
The ministers considered that this strategy should be expressed in an Action Plan designed
to eliminate all forms of discrimination against people with disabilities, regardless of their
age. The Action Plan should have a special focus on disabled women, people with
disabilities in need of a high level of support and ageing people with disabilities, and ensure
that they will be able to enjoy their human rights, fundamental freedoms, and full
citizenship.
2.4.
Human rights framework
The Council of Europe and its member states will continue to work within antidiscriminatory and human rights frameworks towards safeguarding people with disabilities
against any form of discrimination or abuse, and towards mainstreaming equality of
opportunity for people with disabilities throughout all policy areas.
In drawing up the Action Plan, the member states would like to acknowledge the influence
of existing legal treaties, instruments, standards and policies which support the equal
treatment and human rights of people with disabilities. At European level, the Committee of
Ministers’ Recommendation No. R (92) 6 laid solid foundations. European Union legislation
and programmes have further paved the way, and the European Commission Action Plan
will shape the manner in which disability policies will henceforth be designed and
implemented by the European institutions. The Council of Europe’s New Strategy for Social
Cohesion (2004) includes a particular commitment to making a reality the rights of those
individuals and groups in society who are at particular risk of becoming vulnerable and
socially excluded.
In addition to existing European instruments, the United Nations Standard Rules on the
Equalisation of Opportunities for Persons with Disabilities, the main United Nations human
rights treaties, and developments in relation to the draft United Nations international
convention on the rights of persons with disabilities are noted.
2.5.
Strategic goals
The key objective of this Action Plan is to bring about the full participation of people with
disabilities in society, ultimately mainstreaming disability issues throughout all the policy
areas.
The plan provides a comprehensive framework of specific recommendations flexible enough
to be adaptable in order to meet country-specific conditions. It thus takes due account of the
geographic, economic, cultural, and social diversity of member states and recognises that
transition processes are under way in various member states. It is intended to serve as a
practical tool, a roadmap, for policy makers to enable them to develop and implement
appropriate strategies focused on key priorities.
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It will aid those countries who need to establish a first national Action Plan for the
integration of their disabled citizens and also help countries who already have established
such policies and plans to progress them further.
It will help member states to promote active policies which prohibit discrimination and
promote the right to equal opportunities with effective means of redress if those rights are
infringed.
It encourages member states to respond to the needs of people with disabilities by providing
quality and innovative services and consolidating measures already in place.
It provides a useful source of inspiration for private enterprise, non-governmental
organisations, and other international organisations.
Lastly and most importantly, the Action Plan promotes the essential concept that disabled
people and their representatives need to be consulted as stakeholders in decision-making
processes which affect their lives, from national policy design to more individual subjects.
The implementation of the Action Plan will be regularly evaluated to identify progress and
share good practice. This will require effective and feasible mechanisms to monitor progress
and evaluate the outcome at national level.
2.6.
Structure and content
The Action Plan has a broad scope and encompasses all key areas of the life of people with
disabilities; for example housing, education, employment, mobility and awareness raising.
These key areas are duly reflected in the action lines that are the core of the Action Plan.
The Plan also includes cross-cutting aspects, such as those of women and girls with
disabilities, children and young people with disabilities, ageing of people with disabilities,
people with disabilities in need of a high level of support, and people with disabilities from
minorities and migrants.
In the Action Plan, due account is taken of relevant existing European and international
instruments, treaties, plans and developments in relation to the draft United Nations
international convention on the rights of persons with disabilities.
The fundamental principles governing this Action Plan include non-discrimination, equal
opportunities, independence and full participation of disabled people.
The key elements of the Action Plan are overarching and fundamental principles, key action
lines, cross-cutting aspects, implementation and follow-up mechanisms and a phased
implementation process. The Action Plan is structured accordingly.
The Action Plan does not contain a definition of disability. The Committee of Ministers
agreed that this is a matter for individual member states and their national policy.
Similarly, the Action Plan does not contain a specific action line on the subject of prevention.
This is a subject important to disabled people, non-disabled people and governments since
the effects of disability impact on the individual, their families and society in general. In line
with the World Health Organization (WHO) International Classification of Functioning,
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Disability and Health (ICF),1 this Action Plan as a whole deals with the prevention of the
development of activity limitations and participation restrictions. The Action Plan thus
acknowledges the ICF and will encourage member states to use this as a standardisation
framework.
The Committee of Ministers felt that ongoing developments in medical treatment,
advancements in the early detection of disability and the advancement of public health
policies should be addressed by relevant committees within the Council of Europe.
The Action Plan acknowledges the principle that society has a duty to all its citizens to
ensure that the effects of disability are minimised through actively supporting healthy
lifestyles, safer environments and supportive communities. These issues are addressed in
the various action lines, but particularly in the ones dealing with health care and
rehabilitation.
2.7.
Fundamental principles
The fundamental principles which govern this Action Plan are:
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–
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–
–
–
–
non-discrimination;
equality of opportunities;
full participation in society of all persons with disabilities;
respect for difference and acceptance of disability as part of human diversity;
dignity and individual autonomy including the freedom to make one’s own choices;
equality between women and men;
participation of disabled people in all decisions affecting their lives, both at individual
level and at society level through their representative organisations.
2.8.
Procedure
The drafting process of the Action Plan started at the 26th session of the Committee on the
Rehabilitation and Integration of People with disabilities (Partial Agreement) (CD-P-RR) in
October 2003. To facilitate this process a working group, mandated by the CD-P-RR and
assisted by an ad hoc drafting group, was established to elaborate the Action Plan.
The Action Plan advocates the role of non-governmental organisations of people with
disabilities as a source of expert knowledge and sees them as competent partners in policy
development. Consequently, the European Disability Forum, representing disabled persons’
organisations, has played an important and active role in the elaboration of the Council of
Europe Disability Action Plan.
To ensure an increased awareness and implementation of the Action Plan all relevant
Council of Europe bodies and committees have been consulted.
3.
Key action lines
The Action Plan outlines specific actions in a broad range of policy areas which, when
combined, can provide a comprehensive framework to develop and progress national
1
Geneva, 2001.
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policies and strategies for people with disabilities and also mainstream policies with a view
to promoting the full participation of people with disabilities in society.
The action lines build on the Malaga Ministerial Declaration on People with disabilities
“Progressing towards full participation as citizens” (adopted at the Second European
Conference of Ministers responsible for disability integration policies, Malaga, Spain,
May 2003), on Council of Europe Recommendation No. R (92) 6 on a coherent policy for
people with disabilities and on developments in Europe generally.
Each action line sets out key objectives and specific actions to be implemented by member
states under the following headings:
–
–
–
–
–
–
–
–
–
–
–
–
–
–
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No. 1:
No. 2:
No. 3:
No. 4:
No. 5:
No. 6:
No. 7:
No. 8:
No. 9:
No. 10:
No. 11:
No. 12:
No. 13:
No. 14:
No. 15:
Participation in political and public life;
Participation in cultural life;
Information and communication;
Education;
Employment, vocational guidance and training;
The built environment;
Transport;
Community living;
Health care;
Rehabilitation;
Social protection;
Legal protection;
Protection against violence and abuse;
Research and development; and
Awareness-raising.
3.1.
Action line No.1: Participation in political and public life
3.1.1.
Introduction
The participation of all citizens in political and public life and the democratic process is
essential for the development of democratic societies. Society needs to reflect the diversity of
its citizens and benefit from their varied experience and knowledge. It is therefore important
that people with disabilities can exercise their rights to vote and to participate in such
activities.
Efforts must be made to create the environment where people with disabilities are
encouraged and are able to participate in politics at local, regional, national and
international levels. This can only be achieved if conditions are created whereby everyone
can enjoy their political rights.
It is noted that women and young people with disabilities generally account for a small
proportion of those occupying representative functions. It is important that they are also
encouraged to participate and be included in representative groups.
3.1.2.
Objectives
i.
To actively promote an environment where people with disabilities can participate
on an equal footing in political parties and civil society;
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ii.
to increase the participation of people with disabilities in political and public life at
all levels, local, regional, national and international, in order to fully represent the diverse
nature of society;
iii.
to work to encourage the participation of women and young people with disabilities,
as well as those in need of a high level of support, in the political arena at all levels;
iv.
to ensure that people with disabilities and their representative organisations are
consulted and have a role to play in determining policies for people with disabilities.
3.1.3.
Specific actions by member states
i.
To ensure that voting procedures and facilities are appropriate and accessible to
people with disabilities so that they are able to exercise their democratic rights, and allow,
where necessary, the provision of assistance in voting;
ii.
to protect the right of people with disabilities to vote by secret ballot and, where
necessary, upon their request, allow assistance in voting by a person of their choice;
iii.
to ensure that no person with a disability is excluded from the right to vote or to
stand for election on the basis of her/his disability;
iv.
to ensure that election information is available and accessible in all necessary
alternative formats, and easy to understand;
v.
to encourage political parties and other civil society organisations to provide their
information and organise their public meetings in an accessible way;
vi.
to encourage people with disabilities, in particular women and young people, to
form and join representative disability organisations at local, regional and national level for
the purpose of contributing to and influencing policy at all levels;
vii.
to encourage consultation with people with disabilities and their organisations on an
equal basis to others, in the democratic decision-making process;
viii.
to implement the relevant provisions included in Recommendations Rec(2001)19 of
the Committee of Ministers to member states on the participation of citizens in local public
life, Rec(2003)3 of the Committee of Ministers to member states on balanced participation of
women and men in political and public decision-making, Rec(2004)11 on legal, operational
and technical standards of e-voting, and Rec(2004)15 on electronic governance.
3.2.
Action line No. 2: Participation in cultural life
3.2.1.
Introduction
The right of people with disabilities as individuals to be fully integrated into society is
dependent on them being able to participate in the cultural life of that society. If people with
disabilities are to remain or become independent they must have as complete a life as
possible interacting with other members of society, be they disabled or non-disabled people.
They have the right to participate in culture, leisure, sport and tourism.
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The Council of Europe and its member states are committed to taking the rights of people
with disabilities into account when formulating and implementing their cultural policy.
Concerted action is required to transform the opportunities and quality of life for people
with disabilities through their access and involvement in the arts and social life.
There is no easy route to attaining this goal. Various means can be pursued but it may
ultimately require enactment of specific legislation. This should reflect the concept of
“reasonable adjustment” especially in the context of access to older buildings or historic
monuments and smaller private business premises. It will also require the diversity of
society to be fully reflected in broadcasting media.
3.2.2.
Objectives
i.
To take appropriate measures to ensure that persons with disabilities can access
local, regional and national cultural life;
ii.
to ensure that people with disabilities can participate in cultural, recreational, leisure,
sporting, spiritual and social activities, both as observers and as actors;
iii.
to work to ensure that people with disabilities can develop and utilise their creative,
athletic, artistic, spiritual and intellectual potential for their own benefit and that of their
communities.
3.2.3.
i.
To encourage institutions and relevant bodies at local, regional, national and
international level to make literature and other cultural information material accessible to
people with disabilities, making full use of electronic technology where appropriate, and in
simple and understandable wording;
ii.
to urge public institutions and to encourage private institutions, relevant bodies and
providers to actively engage all people with disabilities in their cultural, leisure, sporting,
spiritual and intellectual activities;
iii.
to encourage their broadcasting and related creative industries to ensure that people
with disabilities can access broadcasting, films, theatre plays and other arts-related activities
in accessible formats which may include captioning, subscript, audio description and sign
language;
iv.
to urge national broadcasting and related creative industries to publish action plans
for increasing the employment of people with disabilities both “in front of the
camera/microphone and behind it”;
v.
to encourage institutions and relevant bodies dealing with culture, sports, leisure
and tourism to undertake regular disability awareness training for their staff as a
mainstream activity;
vi.
to enable people with disabilities to enjoy access to culture, sports, tourism and
leisure activities by, for example, encouraging providers to make their premises and services
accessible through whatever means that are necessary;
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vii.
to take appropriate steps:
–
to ensure that laws protecting intellectual property rights do not constitute an
unreasonable or discriminatory barrier to access by people with disabilities to
cultural materials, while respecting the provisions of international law;
to ensure that persons with disabilities can acquire artist’s status and benefit from
their artistic property;
–
viii.
to encourage people with disabilities to participate in activities regardless of whether
they are intended for people with or without disabilities;
ix.
to ensure that sport and cultural activities are an integral part of the education
programmes for children with disabilities, recognising the role of such activities in
enhancing social skills.
3.3.
Action line No. 3: Information and communication
3.3.1.
Introduction
Access to information and communication is a key aspect for participation in society. If
people with disabilities are to exercise their rights actively, participate and make choices
about their lives, it is essential that they can access information through adequate
communication systems For many people with disabilities, however, information and
communication continue to be largely inaccessible.
Ongoing developments in information and communications are changing the way in which
citizens interact with each other, conduct business, access services and information and
communicate generally. Technological advancements include the Internet, eCommunication
facilities, videophones, etc. It is important that all citizens benefit from such technological
advancements and that no group be excluded, in particular people with disabilities.
Public bodies have a particular duty to ensure that their information is accessible in a range
of formats responding to the diverse needs of people with disabilities. Such bodies should
also be models of best practice for the private sector, and all those providing services to
people with disabilities, who should be encouraged to adopt such practices also.
Communication systems must also be accessible to people with disabilities. There are
already good examples of the types of systems that can be used, such as telephone relay
systems or text and video communication systems
People with disabilities should be consulted regarding the development of standards and
the design of new communication and information systems
If we are to have a truly inclusive society, people with disabilities must be able to use
information and communication systems along with everyone else.
3.3.2.
Objectives
i.
To take appropriate measures to ensure that people with disabilities can seek, receive
and impart information on an equal footing with other members of society;
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ii.
to make the best use of new technologies with the aim of increasing independence
and interactions of people with disabilities in all areas of life.
3.3.3.
i.
To seek to provide official information to people with disabilities in accessible
formats and technologies, acknowledging the needs arising from different impairments (for
example Braille, audio-tape or easy-to-read versions);
ii.
to undertake training and other actions to encourage the use of information and
communication technologies by persons with disabilities;
iii.
to ensure that all e-learning materials are accessible to persons with disabilities
through compliance with existing accessibility standards;
iv.
to recognise that people with disabilities may use sign languages, Braille, and
alternative means and modes of communication (including advocacy services), and seek to
accommodate these as far as possible in official interaction. On request, in meetings and
conferences, a person should be available to summarise the contents in simple wording;
v.
to make communication systems more accessible to people with disabilities through
new technologies, for example text communication;
vi.
to ensure public authorities and other public bodies make their information and
communications accessible to people with disabilities, including their websites which shall
comply with current international accessibility guidelines;
vii.
to encourage all private bodies, particularly those that receive public funding, to
make their information and communications accessible to people with disabilities;
viii.
to encourage the development, production and distribution of affordable assistive
technologies in information and communication;
ix.
to promote compliance with Universal Design principles with respect to all new
information and communication technology developments;
x.
to implement Resolution ResAP(2001)3 “Towards full citizenship of persons with
disabilities through inclusive new technologies”.
3.4.
Action line No. 4: Education
3.4.1.
Introduction
Education is a basic factor in ensuring social inclusion and independence for all people,
including those with disabilities. Social influences, for example from families and friends,
also contribute, but for the purposes of this action line education shall cover all stages of life,
including pre-school, primary, secondary, high school education and professional training,
as well as life-long learning. The creation of opportunities for disabled people to participate
in mainstream education is not only important for disabled people but will also benefit nondisabled people’s understanding of human diversity. Most education systems provide
access to mainstream education and specialised educational structures for disabled people,
244
as appropriate. Mainstream and specialised structures should be encouraged to work
together to support disabled people in their local communities, but this should be consistent
with the goal of full inclusion.
3.4.2.
Objectives
i.
To ensure that all persons, irrespective of the nature and degree of their impairment,
have equal access to education, and develop their personality, talents, creativity and their
intellectual and physical abilities to their full potential;
ii.
to ensure that disabled people have the opportunity to seek a place in mainstream
education by encouraging relevant authorities to develop educational provision to meet the
needs of their disabled population;
iii.
to support and promote lifelong learning for disabled people of all ages and facilitate
efficient and effective transitions between each phase of their education and between
education and employment;
iv.
to foster at all levels of the educational system, including in all children from an early
age, an attitude of respect for the rights of people with disabilities.
3.4.3.
i.
To promote legislation, policies and planning to prevent discrimination against
children, young people and adults with disabilities in the access to all phases of their
education from early years through to adult provision. In doing so, consult with disabled
users, parents, and carers, voluntary organisations, and other relevant professional bodies, if
appropriate;
ii.
to encourage and support the development of a unified education system, including
mainstream and specialised educational provision, which promotes the sharing of expertise
and greater inclusion of children with disabilities, young people and adults in the
community;
iii.
to enable the early appropriate assessment of the special educational needs of
children with disabilities, young people and adults to inform their educational provision
and planning;
iv.
to monitor the implementation of individual education plans and facilitate a coordinated approach to education provision throughout and towards employment;
v.
to ensure that people with disabilities, including children, receive the support
required, within the mainstream education system, to facilitate their effective education. In
exceptional circumstances, where their professionally assessed special education needs are
not met within the mainstream education system, member states will ensure that effective
alternative support measures are provided consistent with the goal of full inclusion. All
special and mainstream provisions should encourage the transition to mainstream education
and reflect the same goals and standards;
vi.
to encourage the development of initial and ongoing training for all professionals
and staff working across all phases of education to incorporate disability awareness and the
245
use of appropriate educational techniques and materials to support disabled pupils and
students where appropriate;
vii.
to ensure that all educational material and schemes provided through the general
educational system are accessible to persons with disabilities;
viii.
to include, in school civic education syllabuses, subjects relating to people with
disabilities as people who have the same rights as all other citizens;
ix.
to ensure that disability awareness is a key part of education programmes in
mainstream schools and institutions;
x.
to take steps to make places of education and training accessible for persons with
disabilities, including by the provision of personal support and of reasonable adjustments
(including equipment) to meet their needs;
xi.
to ensure that parents of children with disabilities are active partners in the process
of the development of the individualised education plans of their children;
xii.
to ensure access to non-formal education allowing disabled youth to develop needed
skills otherwise unattainable through formal education;
xiii.
to consider, where appropriate, signing and ratifying the European Social Charter
(revised) (ETS No. 163), in particular Article 15.
3.5.
Action line No. 5: Employment, vocational guidance and training
3.5.1.
Introduction
Employment is a key element for the social inclusion and economic independence of all
citizens of working age. Compared to non-disabled persons, the employment and activity
rates of disabled people are very low. Policies to increase the activity rate need to be
diversified – according to the employment potential of disabled people – and
comprehensive, in order to address all the barriers to participation in the workforce.
Improving the employment situation of disabled people would not only benefit people with
disabilities persons but also employers and society as a whole.
Vocational guidance and assistance play an important role in helping people to identify
activities for which they are best suited and to guide training needs or future occupation. It
is vital that people with disabilities have access to assessments, vocational guidance and
training to ensure they can attain their potential.
This action line seeks to form the basis for greater participation of persons with disabilities
in employment, to ensure career choices and to lay the foundations through structures and
support in order to ensure real choices. All measures apply to public as well as private
employers.
Social enterprises (for example social firms, social co-operatives) as part of the open
employment, or sheltered workshops may contribute to the employment of disabled
persons.
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3.5.2.
Objectives
i.
To promote the employment of people with disabilities within the open labour
market by combining anti-discrimination and positive action measures in order to ensure
that people with disabilities have equality of opportunity;
ii.
to tackle discrimination and promote participation of people with disabilities in
vocational assessment, guidance, training, and employment-related services.
3.5.3.
i.
To mainstream issues relating to the employment of people with disabilities in
general employment policies;
ii.
to ensure that persons with disabilities have access to an objective and individual
assessment which:
–
identifies their options regarding potential occupations;
–
shifts the focus from assessing disabilities to assessing abilities and relating them to
specific job requirements;
–
provides the basis for their programme of vocational training;
–
helps them find appropriate employment or re-employment;
iii.
to ensure that people with disabilities have access to vocational guidance, training
and employment-related services at the highest possible qualification level, and making
reasonable adjustments where necessary;
iv.
to ensure protection against discrimination in all stages of employment, including
selection and recruitment, as well as in all measures related to career progression;
v.
–
–
–
to encourage employers to employ people with disabilities by:
applying recruitment procedures (for example advertising, interview, assessment,
selection) which ensure that job opportunities are positively made available to people
with disabilities;
making reasonable adjustments to the workplace or working conditions, including
telecommuting, part-time work and work from home, in order to accommodate the
special requirements of employees with disabilities;
increasing the disability awareness of management and staff through relevant
training;
vi.
to ensure that general self-employment schemes are accessible and supportive to
vii.
to ensure that support measures, such as sheltered or supported employment, are in
place for those people whose needs cannot be met without personal support in the open
labour market;
viii.
to support people with disabilities to progress from sheltered and supported
employment to open employment;
ix.
to remove disincentives to work in disability benefit systems and encourage
beneficiaries to work when they can;
247
x.
to consider the needs of women with disabilities when devising programmes and
policies related to equal opportunities for women in employment, including childcare;
xi.
to ensure that employees with disabilities enjoy the same rights as other employees
in relation to consultation on employment conditions and membership and active
participation in trade unions;
xii.
to provide effective measures to encourage the employment of people with
disabilities;
xiii.
to ensure that health and safety legislation and regulations include the needs of
persons with disabilities and do not discriminate against them;
xiv.
to promote measures, including legislative and integration management, that enable
persons who become disabled while employed to stay within the labour market;
xv.
to ensure that especially young disabled people can benefit from employment
internships and traineeships in order to build skills and from information on employment
practices;
xvi.
(revised) (ETS No. 163), in particular Article 15;
xvii. to implement Resolution ResAP(95)3 on a charter on the vocational assessment of
3.6.
Action line No. 6: The built environment
3.6.1.
Introduction
The overarching aim is to create a society for all. An accessible environment has a key role to
play in creating a more inclusive society where people with disabilities can participate in
daily life. Existing barriers in the built environment hinder or prevent disabled persons from
such participation and enjoyment of fundamental rights. Making the environment accessible
to persons with disabilities, irrespective of type of disability, would additionally benefit all
members of society. This requires an understanding of existing barriers, including attitudes
and physical barriers, and a commitment to removing these through positive actions and
other measures. The Resolution ResAP(2001)1 on Universal Design promotes the
introduction of the principles of Universal Design into the curricula of all occupations
working on the built environment, including architects, engineers, town planners and all
other relevant professions and occupations working on or with the built environment. It also
aims to simplify life for everyone by making the built environment more accessible, usable
and understandable.
3.6.2.
Objective
To progressively establish an environment accessible to people with disabilities by applying
the principles of Universal Design, thus avoiding the creation of new barriers.
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3.6.3.
i.
To ensure that all relevant policy areas include the overarching aim of creating a
barrier-free built environment;
ii.
to develop guidelines and standards, and if necessary legislation, to promote public
buildings, and public indoor as well as outdoor environments to be accessible to and usable
by people with disabilities, taking into account the specific nature of historic buildings;
iii.
to ensure that universities and institutions responsible for the training of all
occupations working on the built environment (such as architects and town planners,
professionals in the construction sector, cultural heritage conservators and cultural tourism
specialists) promote the principle of Universal Design through curricula for initial and
further training and other appropriate means;
iv.
to promote the use of assistive devices and technological innovations in order to
improve the accessibility of the built environment and give persons with disabilities equal
opportunities to participate in community life. Such practices should be applied to new
constructions and progressively extended to existing buildings;
v.
to support the creation, nomination, and maintenance of centres that promote the
concept of Universal Design;
vi.
to ensure that due attention is paid to the safety of people with disabilities when
designing emergency and evacuation procedures;
vii.
to ensure that access to buildings and public areas is not barred to assistive animals
accompanying persons with disabilities;
viii.
to implement Resolution ResAP(2001)1 on the introduction of the principles of
Universal Design into the curricula of all occupations working on the built environment.
3.7.
Action line No. 7: Transport
3.7.1.
Introduction
The development and implementation of accessible transport policies at all levels can result
in a substantial improvement in the quality of life of many people with disabilities and can
be a prerequisite to achieving equality of opportunity, independent living and active
participation in the community social and cultural life as well as employment.
Many member states will already be aware of or party to developments through the
European Conference of Ministers of Transport (ECMT) and the principles and actions
promoted through that forum can guide progress by member states in implementing this
Disability Action Plan. The resulting accessible transport services will benefit other transport
users including the elderly and parents with young children.
In order to ensure that disabled people can benefit from public transport, it is vital that the
whole transport chain be accessible.
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3.7.2.
Objectives
i.
To enhance the participation of persons with disabilities in society through the
implementation of accessible transport policies;
ii.
to ensure that accessible transport policies are implemented taking account of the
needs of all persons with different kinds of impairments and disabilities;
iii.
to promote the accessibility of existing passenger transport services for all persons
with disabilities, and ensure that all new transport services and related infrastructure be
accessible;
iv.
to promote the implementation of the principle of Universal Design in the transport
sector.
3.7.3.
i.
To take account of the recommendations, reports and guidelines developed and
agreed by international bodies, particularly in relation to the development of standards,
guidelines, strategies and, if appropriate, legislation, to ensure the accessibility of transport
services and infrastructure including the built environment;
ii.
to monitor and review the implementation of accessible transport policies;
iii.
to ensure that public transport operators include mandatory disability awareness
training as part of the standard training courses for persons engaged in transport service
provision;
iv.
to promote the introduction and adoption of national guidelines for accessible
transport service provision for use by both public and private transport operators;
v.
to establish procedures for co-operation and consultation with the relevant
stakeholders including in particular relevant government agencies, service providers and
disability interest groups to inform policy development and planning in relation to
accessible transport provision;
vi.
to promote and encourage private transport service operators to provide accessible
services;
vii.
to ensure that information on public transport services be made accessible as far as
possible in diverse formats and through diverse communication systems to cater for people
with disabilities;
viii.
to encourage the design of innovative programmes which support disabled people
who experience difficulties in using public transport to utilise their own private transport;
ix.
to ensure that assistive animals (for example guide dogs) accompanying people with
disabilities are accommodated in public transport;
x.
to ensure the provision and protection of parking facilities for disabled people with
reduced mobility;
250
xi.
to recognise the specific requirements of people with disabilities when devising
general fundamental texts on passenger rights;
xii.
to protect through legislation disabled people from discrimination in accessing
transport;
xiii.
to ensure that transport safety and emergency procedures do not create additional
inequalities for people with disabilities.
3.8.
Action line No. 8: Community living
3.8.1.
Introduction
This action line focuses on enabling people with disabilities to live as independently as
possible, empowering them to make choices on how and where they live. This requires
strategic policies which support the move from institutional care to community-based
settings ranging from independent living arrangements to small group homes. Such policies
should be flexible, covering programmes which enable persons with disabilities to live with
their families and recognising the specific needs of individuals with disabilities requiring a
high level of support.
In general, a family’s day-to-day life differs considerably depending whether or not it has a
child with a disability: guidance and care, for instance, take up a great deal of time, visits to
therapists, doctors, etc., are necessary, the child needs supervision in recreational activities
and assistance with the practical aspects of daily living, etc. It is important that parents of
children with disabilities can have access to suitable training enabling them to acquire the
requisite proficiencies to lead a life as close as possible to normal with their disabled child.
Full independent living may not be a possibility or a choice for all individuals. In
exceptional cases, care in small, quality structures should be encouraged as an alternative to
living in an institution. The design of independent living arrangements should involve
people with disabilities and their representative organisations.
Disabled people living in the community have different needs that require different levels of
care, assistance and support. Transparent eligibility criteria and independent individual
assessment procedures, which take into account disabled persons’ own choice, autonomy
and welfare, will promote equitable access to services.
Independent living policies are not just confined to living arrangements, but are also
dependent on the accessibility of a broad range of services, including transport. The success
of such policies requires a mainstream approach to the planning, development and delivery
of mainstream services to ensure they also respond to the needs of individuals with
disabilities with cross-agency support to ensure a co-ordinated approach.
3.8.2.
Objectives
i.
To enable people with disabilities to plan their life and live as independently as
possible in their community;
251
ii.
to provide a broad range of quality support services at community level in order to
allow for freedom of choice;
iii.
to pay special attention to the situation of families that have a child/children with
disabilities and advocate an approach that accommodates training for parents concerned, as
well as to disabled parents and their participation in child-care and education tasks.
3.8.3.
i.
To ensure a co-ordinated approach in the provision of community-based quality
support services to enable people with disabilities to live in their communities and enhance
their quality of life;
ii.
to develop and promote housing policies which enable people with disabilities to
live in suitable housing in their local community;
iii.
to support formal and informal help, making it possible for people with disabilities
to live at home;
iv.
to recognise the status of carers, by providing them with support and relevant
training;
v.
to have the needs of families as providers of informal care thoroughly assessed,
especially those with children with disabilities or caring for persons in need of a high level
of support, with a view to providing information, training and assistance, including
psychological support, to enable life within the family, paying particular attention to the
reconciliation of private and professional life and to gender equality;
vi.
to ensure community-based quality service provision and alternative housing
models, which enable a move from institution-based care to community living;
vii.
to ensure that individuals can make informed choices with the assistance, when
appropriate, of a skilled advocacy service;
viii.
to promote schemes which will allow disabled people to employ personal assistants
of their choice;
ix.
to provide complementary services and other facilities, for example day centres,
short-stay centres or self-expression groups, offering suitable forms of therapy, to give
people with disabilities and their families periods of support and respite;
x.
to provide people with disabilities, in particular those in need of a high level of
support, with tailored support provision, including advocacy, in order to reduce any risk of
social exclusion;
xi.
to implement the relevant provisions included in Recommendation No. R (96) 5 of
the Committee of Ministers to member states on reconciling work and family life.
252
3.9.
Action line No. 9: Health care
3.9.1.
Introduction
People with disabilities have the same right as other members of society to good quality
health services and relevant treatment and technology to ensure the best possible health. In
some cases, disabled people will require special and innovative health care services to
improve the quality of their life. Disabled people and their representatives (where necessary)
should be consulted and fully involved in the decision-making process regarding their
personal care plan. This approach places disabled people at the centre of the planning
process and service provision design and empowers the individuals to make informed
decisions about their health.
When planning and delivering health care services, account should be taken of
developments regarding the ageing population and the related health consequences,
particularly for persons with disabilities. It is therefore necessary to give priority to the
development of new policies and strategies in the area of health.
Health care professionals in all member states need to acknowledge the social and human
rights model of disability and not focus solely on the medical aspect of disability.
3.9.2.
Objectives
i.
To ensure that all disabled people, regardless of gender, age and origin, nature or
degree of impairment:
–
have equal access to all health care services;
–
benefit from access to available specialised services, as appropriate;
–
are as fully involved as possible in the decision-making process of their personal care
plan;
ii.
to ensure that the needs of people with disabilities are included in health education
information and public health campaigns.
3.9.3.
i.
To ensure that no disabled people are discriminated against in access to health care
services and medical records;
ii.
to ensure that each disabled person, or, where not possible due to the origin, nature
or degree of their impairment, their representative, carer or advocate is fully consulted to the
maximum possible extent, in the assessment, design and delivery of their health care plan,
medical intervention and treatment;
iii.
to work towards accessible public and private health service facilities and equipment
and ensure that health care services, including mental health, psychological support services
and in- and out-patient services are equipped and competent to meet the needs of disabled
people;
iv.
to ensure that women with disabilities have equal access to health care services,
including in particular, ante-natal, gynaecological and family planning advice and
treatment;
253
v.
to ensure that gender specific aspects are respected in health care for disabled
people;
vi.
to ensure that reasonable steps are taken to provide all relevant information
regarding an individual’s health care needs or services in a format understandable to people
with disabilities person;
vii.
to ensure that notification of the disability, whether it occurs before or after birth or
after an illness or accident, is made under conditions guaranteeing respect for the person
concerned and the family and ensuring clear, comprehensible information and support for
the individual and his or her family;
viii.
to provide access to health education and public health campaigns through, amongst
others, information and advice for people with disabilities;
ix.
to train health care professionals in such a way as to instil disability awareness
together with the proficiency and methods for meeting the specific needs of persons with
disabilities;
x.
to recognise the need for early intervention and thus establish effective measures to
detect, diagnose, and treat impairments at an early stage, and also to develop effective
guidelines for early detection and intervention measures;
xi.
(revised), in particular Article 11.
3.10.
Action line No. 10: Rehabilitation
3.10.1. Introduction
The Committee of Ministers’ Recommendation No. R (92) 6 on a coherent policy for people
with disabilities recognises that rehabilitation of people with disabilities, by virtue of the
economic and social integration it achieves, is a duty of the community, that it guarantees
human dignity and alleviates the difficulties stemming from society with which people with
disabilities are confronted, and that it should be included among the priority objectives of
any society. With respect to this recommendation, a coherent policy for the rehabilitation of
people with disabilities should aim at preventing the deterioration of disability, alleviating
its consequences, furthering the autonomy of people with disabilities as individuals and
ensuring their economic independence and full integration into society. Comprehensive
rehabilitation programmes should include a variety of complementary measures, provisions,
services and facilities that can considerably contribute to the physical and psychological
independence of disabled people.
3.10.2. Objectives
i.
To enable people with disabilities to attain their maximum independence and
achieve their fullest physical, mental, social, and vocational ability;
ii.
254
to organise, strengthen and extend comprehensive rehabilitation services;
iii.
to enable access to mainstream services and specialist provision to enable people
with disabilities to achieve full social integration within their communities and societies;
iv.
to ensure, in particular, high-quality early intervention, a multi-disciplinary
approach, from birth, including support and guidance for parents.
3.10.3. Specific actions by member states
i.
To formulate, implement and regularly review national rehabilitation policies and
ensure continuous improvement;
ii.
to ensure that people with disabilities, their families and representative organisations
contribute to the design of holistic rehabilitation programmes, their delivery and their
evaluation;
iii.
to ensure that rehabilitation programmes are accessible and tailored to the individual
needs of people with disabilities person; they need the consent of people with disabilities
person or his/her representative;
iv.
where possible, to utilise mainstream provision and facilities but also ensure that
specialist rehabilitation centres are as fully equipped as possible for the service they provide
and have a multidisciplinary team of staff specialising in rehabilitation;
v.
to enhance rehabilitation services and support
multidisciplinary assessment using a holistic approach;
by
means
of
individual
vi.
to promote multi-sector collaboration with the involvement of all relevant sectors,
especially health, education, social and employment and to provide an integrated
rehabilitation management, where necessary to ensure that persons with disabilities have
equality of opportunity;
vii.
to ensure, during education, that children with disabilities have access to
programmes of pedagogical rehabilitation and other resources enabling them to achieve
their full potential;
viii.
to involve both employers and employees and their organisations in vocational
rehabilitation in order to support people who become disabled to return to work at the
earliest opportunity;
ix.
to work towards the availability of individualised, community-based programmes of
rehabilitation for individuals with a disability who so require;
x.
to promote the availability and affordability of assistive devices as part of
rehabilitative measures/programmes for people with disabilities who so require.
3.11.
Action line No. 11: Social protection
Social protection includes social security, social assistance or support, and social services,
which are vital supports for those dependent on them, as they contribute to the quality of
255
life of their recipients. However, there are many situations in which people with disabilities
do not adequately benefit from social protection systems, be it due to the lack of such
provisions or due to access difficulties. The social rights enshrined in the revised European
Social Charter (ETS No. 163), include in particular the right to social security (Article 12), the
right to social and medical assistance (Article 13), and the right to benefit from social welfare
services (Article 14). The implementation of these rights helps to reduce the risk of social
exclusion and marginalisation and hence contributes to opening access to another right
enshrined in the Charter, namely the right of persons with disabilities to independence,
social integration and participation in the life of the community (Article 15).
3.11.2. Objectives
i.
To provide equal access to social protection for people with disabilities;
ii.
to promote policies which progress the shift from financial benefit dependency
towards, where possible, employment and independence.
i.
To ensure a coherent balance between social protection measures and active
employment oriented policies in order to discourage inactive benefit dependency;
ii.
to ensure that the allocation of social services and related support is based on a
sound, multidisciplinary assessment of the person’s needs, and subject to periodic review;
iii.
to ensure that all benefit assessment systems and procedures are accessible to people
with disabilities or their representatives;
iv.
to ensure that general social services take account of the specific needs of people with
disabilities and their families;
v.
to ensure that co-ordination between and across administrative departments and
public and private providers of social services is continuously improved, so that the
provision of quality services meets the needs of people with disabilities;
vi.
to consult with social partners and other key actors, including organisations of
people with disabilities, in relation to the planning and implementation of social protection
policies;
vii.
to ensure effective dissemination of information on all the social protection benefits
to which people with disabilities could be entitled, with special focus on people with
disabilities at risk of social exclusion;
viii.
to ensure that social inclusion and anti-poverty strategies recognise the specific needs
of people with disabilities;
ix.
(revised), the European Code of Social Security (ETS No. 48), the revised European Code of
Social Security (ETS No. 139), and the European Convention of Social Security (ETS No. 78);
256
x.
to implement the relevant provisions included in Recommendation Rec(2003)19 of
the Committee of Ministers to member states on access to social rights.
3.12.
Action line No. 12: Legal protection
People with disabilities have the right to recognition everywhere as persons before the law.
When assistance is needed to exercise that legal capacity, member states must ensure that
this is appropriately safeguarded by law.
Persons with disabilities constitute a varied population group, but all have in common, to a
greater or lesser extent, the need for additional safeguards in order to enjoy their rights to
the full and to participate in society on an equal basis with other members.
The need to focus particular attention on the situation of persons with disabilities, in terms
of the exercise of their rights on an equal basis with others, is confirmed by the initiatives
taken in this area at national and international level.
The principle of non-discrimination should be the basis of government policies designed to
deliver equality of opportunity for people with disabilities.
Access to the legal system is a fundamental right in a democratic society but people with
disabilities can often face a number of barriers, including physical access difficulties. This
requires a range of measures and positive actions, including general awareness raising
among the legal professions about disability issues.
3.12.2. Objectives
i.
To ensure effective access to justice for persons with disabilities on an equal basis
with others;
ii.
to protect and promote the enjoyment of all human rights and fundamental freedoms
by persons with disabilities on an equal basis with others.
i.
To provide protection against discrimination through the setting-up of specific
legislative measures, bodies, reporting procedures and redress mechanisms;
ii.
to ensure that provisions which discriminate against disabled people are eradicated
from mainstream legislation;
iii.
to promote training on human rights and disability (both national and international)
for law enforcement personnel, public officials, judiciary and medical staff;
iv.
to encourage non-governmental advocacy networks working in defence of people
with disabilities’ human rights;
v.
to ensure people with disabilities have equal access to the judicial system by securing
their right to information and communication that are accessible to them;
257
vi.
to provide appropriate assistance to those people who experience difficulty in
exercising their legal capacity and ensure that it is commensurate with the required level of
support;
vii.
to take appropriate measures to ensure that people with disabilities are not deprived
of their liberty, except in accordance with the law;
viii.
to take effective measures to ensure the equal right of persons with disabilities to
own and inherit property, providing legal protection to manage their assets on an equal
basis to others;
ix.
to ensure that no person with a disability is subjected to medical experimentation
against their will;
x.
to implement the relevant provisions included in the Recommendation No. R (99) 4
of the Committee of Ministers to member states on principles concerning the legal protection
of incapable adults.
3.13.
Action line No. 13: Protection against violence and abuse
Acts of abuse or violence against any person are unacceptable and society has a duty to
ensure that individuals, particularly the most vulnerable, are protected against such abuse.
There are indications that the rate of abuse and violence committed against persons with
disabilities is considerably higher than the rate for the general population, and higher in
women with disabilities, particularly women with severe disabilities, where the percentages
of abuse far exceed those of non-disabled women. Such abuse can occur in institutions or
other types of care and situations, including the family environment. It can be inflicted by
strangers or persons known to the individual and can take many forms, for instance verbal
abuse, violent actions, or the refusal to meet basic needs.
While governments cannot guarantee that abuse will not happen they must do their utmost
to establish protection and the strongest possible safeguards. Prevention can be assisted in
many ways, particularly through education to appreciate the rights of individuals to
protection and to recognise and reduce the risk of abuse. Persons with disabilities who
experience abuse or violence should have access to appropriate supports. They must have a
system in which they can have sufficient confidence to report abuse and expect follow-up
action, including individual support. Such systems require personnel who are skilled and
qualified to detect and respond to situations of abuse.
While there has been some research undertaken in recent years, it is clear that further
knowledge is required to inform future strategies and best practice.
3.13.2. Objectives
i.
To work within anti-discriminatory and human rights frameworks towards
safeguarding people with disabilities against all forms of violence and abuse;
258
ii.
to ensure access for people with disabilities to services and support systems for
victims of violence and abuse.
i.
To establish safeguards to protect people with disabilities from violence and abuse
through the effective implementation of policies and legislation, where necessary;
ii.
to promote the availability of and access to training courses for people with
disabilities to reduce the risk of violence and abuse, for example courses in self-confidence
and empowerment;
iii.
to develop processes, measures and protocols adapted to people with disabilities, to
improve detection of violence and abuse, and to ensure that the necessary action is taken
against perpetrators, including redress and adequate professional counselling in case of
emotional problems;
iv.
to ensure that disabled victims of violence and abuse, including domestic, have
access to the relevant support services, including redress;
v.
to prevent and combat violence, ill-treatment and abuse in all situations by
supporting families, raising public awareness and education, promoting discussion and cooperation among relevant parties;
vi.
to support people with disabilities, in particular women, and their families, in
situations of abuse through the provision of information and access to services;
vii.
to ensure that systems are in place for the protection against abuse of persons with
disabilities in psychiatric facilities, social care homes and institutions, orphanages, and other
institutional settings;
viii.
to ensure that relevant training is provided to all staff working in disability-specific
institutional settings and mainstream support services;
ix.
to train police and judicial authorities so that they can receive testimony from
disabled people and treat instances of abuse seriously;
x.
to provide people with disabilities with information on how to avoid the occurrence
of violence and abuse, how to recognise it, and how to report it;
xi.
to take effective legislative, administrative, judicial or other measures with strong
sanctions in a transparent manner and to allow for independent review by civil society in
order to prevent all forms of physical or mental violence, injury or abuse, neglect and
negligent treatment, maltreatment, exploitation or abduction of people with disabilities;
xii.
to implement the relevant provisions included in Recommendation Rec(2002)5 of the
Committee of Ministers to member states on the protection of women against violence;
xiii.
to implement the relevant provisions included in Recommendation No. R (99) 4 of
the Committee of Ministers to member states on principles concerning the legal protection of
incapable adults;
259
xiv.
to implement Resolution ResAP(2005)1 on safeguarding adults and children with
disabilities against abuse, and to take account of the relevant complementary report.1
3.14.
Action line No. 14: Research and development
Comprehensive research, statistical data collection and analysis inform evidence-based
policy design. Reliable information identifies emerging issues, helps to design solutions and
deliver effective results. It also identifies best practice and monitors change in society.
The lack of data in relation to people with disabilities is recognised as a barrier to policy
development at both national and international levels. We need to encourage and advance
comprehensive, diversified and specialised research on all disability issues and co-ordinate
it at all levels in order to promote the effective implementation of the objectives set out in
this Action Plan.
3.14.2. Objectives
i.
To promote more evidence-based policy and standard development by improving
the translation of future-oriented research findings into policy;
ii.
to harmonise statistical data collection methodology, nationally and internationally,
in order to achieve valid and comparable research information;
iii.
to use and support all available research and development potential, in a
multidisciplinary way, in order to promote the participation of people with disabilities and
improve their quality of life.
i.
To develop statistical and information strategies for disability policy and standard
development based on a social and human rights-based model of disability, and to review
the effectiveness of existing national strategies and databases;
ii.
to ensure information gained through needs assessments, whilst being treated as
confidential on an individual basis, is used to the greatest effect to inform overall service
planning and provision at national, regional and local levels;
iii.
to ensure that mainstream research, where appropriate, provides data about the
participation of people with disabilities, covering all relevant areas of this Action Plan;
iv.
to ensure that research, where possible, incorporates a gender dimension facilitating
analysis of the situation regarding women with disabilities;
Safeguarding adults and children with disabilities against abuse, Council of Europe Publishing,
Strasbourg, 2003, ISBN 92-871-4919-4.
1
260
v.
to work towards a co-ordinated approach to research by agreeing common
classifications leading to evaluation and analysis across national and international
databases;
vi.
to promote research studies on successful rehabilitation measures aimed at recovery
and reintegration in the community;
vii.
to promote studies on the effects of demographic changes and the ageing process on
the quality of life of people with disabilities;
viii.
to involve representatives of persons with disabilities and other relevant
stakeholders in the development of research strategy and data gathering;
ix.
to support applied scientific research into the design of new information and
communication technologies, technical aids, products and devices which can contribute to
the independent living and participation of disabled people in society;
x.
to encourage all product research to take account of Universal Design principles;
xi.
to promote the exchange of good practice, sharing of information and close cooperation between relevant bodies to ensure availability of comprehensive data to inform
policies;
xii.
to commission relevant research and innovative pilot projects to support policy
development which covers all the relevant areas of this Action Plan.
3.15.
Action line No. 15: Awareness raising
People with disabilities face many barriers to their participation and recognition as full and
equal members of society. Most disabled people consider society’s attitude to be the biggest
barrier to their full integration. Persons with disabilities are still confronted with
unacceptable attitudes based on existing prejudices, fear, low expectations and distrust in
their abilities. These attitudes could be changed through effective awareness raising
strategies involving a range of stakeholders.
In recent years, many member states have progressed anti-discrimination legislation and
have encouraged social policy initiatives. These initiatives are contributing to the integration
of disabled people into their local communities but this alone is not enough.
In order to promote their activities, member states should ensure co-operation both in the
field of media, and in other fields of activity that could help in bringing about a change in
attitudes.
Disabled people need to be present in advertisements, on screen, on radio, and in print to
bring about a paradigm shift in the perception of disability and disabled people; a real
change in attitudes by all members of society can then become a reality.
Society needs to be made aware of the fact that persons with disabilities have the same
human rights as all other people and that there are many barriers in society which hinder or
261
prevent people with disabilities in the enjoyment of these rights. The elimination of these
barriers will not only benefit persons with disabilities but society in general. Moreover, it is
important to show the positive contribution that all persons with disabilities, regardless of
the degree of their disability, make as active and full members of society.
3.15.2. Objectives
i.
To improve attitudes towards people with disabilities as active and full members of
society through a wide range of actions;
ii.
to raise awareness about disability and the rights of people with disabilities to
equality of opportunity and protection against discrimination;
iii.
to combat any negative attitude against disabled persons that could harm the image
and interests of people with disabilities.
i.
To mainstream images of disability in all government advertising and publicity to
bring about a change of attitudes in society;
ii.
to encourage all media and media organisations to increase and improve the
portrayal of people with disabilities as full citizens in their media broadcasting and written
communications, for example by introducing ethical guidelines related to the dignity of
iii.
to encourage television channels and radio stations to discuss issues relating to
persons with disabilities in general programmes and, where appropriate, in specialised
programmes;
iv.
to undertake, where possible, regular national awareness-raising campaigns on the
rights, potential and contributions of people with disabilities;
v.
to use innovative and other practical means to highlight to children, young people
and adults the issues faced by disabled people;
vi.
to encourage people with disabilities and their organisations to publicise themselves
locally and nationally by making available guidance on dealing with the media;
vii.
to support and promote the distribution of examples of good practice in all areas of
life to raise awareness in education, working environment and the community.
4.
4.1.
Introduction
barriers or experience two fold discrimination.
These people have a higher risk of exclusion and generally experience lower levels of
participation in society. As such, policy makers need to ensure that their inclusion policies
262
and strategies take into account the needs of specific groups of people with disabilities to
ensure their participation in society.
The Malaga Declaration highlights two such groups to be considered throughout this Action
Plan– women with disabilities and persons in need of a high level of support. The reports of
the Working Group on Discrimination against Women with Disabilities and Persons in Need
of a High Level of Support analysed the particular factors unique to these groups and
proposed specific actions which cut across many action lines, including independent living,
education, employment, etc.1
Other groups which require a cross-cutting response include children with disabilities and
ageing persons with disabilities, people with disabilities from minorities (for example Roma,
migrants, refugees, displaced persons, or other ethnic, cultural or linguistic minorities).
Policy makers need to acknowledge the barriers and challenges faced by each of these
groups and ensure that their policies are equipped to remove those barriers and ensure that
individuals can reach their full potential alongside other citizens.
4.2.
Women and girls with disabilities
Women and girls with disabilities2 can and often do face multiple obstacles to participation
in society due to two fold discrimination, namely on grounds of both gender and disability.
Although the general situation of people with disabilities has significantly improved, the
benefits of such changes in society are not always equally distributed between women with
disabilities and men with disabilities.
The development and implementation of relevant policies and implementation measures
should be designed so as to ensure a balance of opportunities between disabled men and
women. The specific situation of women and girls with disabilities needs to be taken into
account in the development of both disability and gender mainstream policies and
programmes at all levels, namely international, national, regional and local.
Action is required to remove obstacles which prevent women with disabilities from enjoying
their rights on the same basis as men and other women. This action extends across a broad
range of areas including relationships, parenthood, family life, sexuality and protection from
violence and abuse. It also includes measures to ensure equal opportunities to participate in
political and public life, education, training, employment and social and cultural life. Many
of these policy areas are covered by action lines in this Action Plan but must be considered
in terms of how factors affecting the participation of women and girls with disabilities can
be addressed by member states.
4.3.
People with disabilities in need of high level of support3
One of the more vulnerable groups of people with disabilities is the group of individuals
with disabilities who, due to the severity and complex nature of their impairment, require a
Discrimination against women with disabilities, Council of Europe Publishing, Strasbourg, 2003,
ISBN 92-871-5316-7, Community living for people with disabilities in need of a high level of support, Council
of Europe, Strasbourg, 2004.
2 Any reference in this Action Plan to women with disabilities is understood to include girls with
disabilities.
3 Community living for people with disabilities in need of a high level of support, op. cit.
1
263
high level of support. Their quality of life is very much dependent on the availability of
appropriate and quality services that respond to their and their families’ needs to facilitate
their participation in society to the greatest extent possible, rather than a replica of services
provided to persons with disabilities generally.
This group tends to be the most likely group to be living in institutional settings or in some
cases living with their family but may experience isolation due to little or no contact with
service provision and other members of society. For these reasons people of this group
require intensive and permanent quality services geared to their specific needs.
Delivery provision needs to be strengthened in order to respond without departing from a
model of community-based services and equitable access to mainstream provision. Member
states need to recognise that this requires intensive planning and co-ordination across
relevant authorities, government agencies and service providers both at national and local
levels.
4.4.
Children and young people with disabilities
The Convention on the Rights of the Child is based on four fundamental principles – the
child’s right not be discriminated against; the best interests of the child to be considered in
all decisions; the child’s right to life and development; and the right to express its opinion.
Boys and girls with disabilities also have the right to access these same rights, member states
need to build knowledge about their needs to inform planning, decisions and practices
across a wide spectrum of policy areas.
The needs of children with disabilities and their families must be carefully assessed by
responsible authorities with a view to providing measures of support which enable children
to grow up with their families, to be included in the community and local children’s life and
activities. Children with disabilities need to receive education to enrich their lives and
enable them to reach their maximum potential.
Quality service provision and family support structures can ensure a rich and developing
childhood and lay the foundation for a participative and independent adult life. It is
important therefore that policy makers take into account the needs of children with
disabilities and their families when designing disability policies and mainstream policies for
children and families.
Participation and active citizenship is about having the right, the means, the space and the
opportunity and where necessary the support to participate in and influence decisions and
engage in actions and activities so as to contribute to building a better society. Youth
disability organisations should be consulted in the preparation of youth policy and
programmes. The voices of young people with disabilities should be heard in all matters
which concern them.
Young people with disabilities still face considerable barriers in accessing all aspects of their
life: education, work, sports, culture, entertainment, and community life. These issues can
only be addressed on the basis of a comprehensive strategy. Ways to ensuring their full
participation in society, taking into account their specific needs, must be addressed in the
preparation of any youth policy. In accordance with the European Charter on the
participation of young people in local and regional life, the active participation of young
264
people in decisions and actions at local and regional level is essential for building more
democratic, inclusive and prosperous societies.
4.5.
Ageing of people with disabilities
The ageing of people with disabilities, particularly those requiring more intensive support
due to the nature of their impairment, presents new challenges for societies across Europe.
This includes support for individuals and for their families especially where elderly parents
are the main carers. Innovative approaches are required to meet these challenges across a
wide range of policy and service areas. Council of Europe reports identify key issues for this
group and proposals for the way forward. Co-ordinated action which can respond to
specific needs with the aim of enabling ageing people with disabilities to remain in their
community to the greatest extent possible. This requires an assessment of individual needs
and forward planning as well as the availability of required services. Disability issues
should also be taken into account when designing policies for older people.
It is considered that these issues and factors affecting the participation of ageing people with
disabilities in daily life and activities should be taken into account when devising actions
across the action lines set out in this Action Plan.1
4.6.
People with disabilities from minorities and migrants
People with disabilities from minority groups, disabled migrants and refugees may
experience multiple disadvantages because of discrimination or lack of familiarity with
public services.
As an example, despite increased attention paid to Roma in Europe, further action is needed
to recognise their status as full and equal members of society. Inside their own community,
disabled people are considered as invisible and are therefore a specifically vulnerable group.
Education, employment, social health services and cultural life are particularly important
areas to address for all groups.
Member states should ensure that support for people with disabilities takes account of their
language or cultural background and the particular needs of such minority groups.
5.
5.1.
Introduction
The governments of member states have the primary responsibility for implementing
disability policies at national level, and in particular for implementing the specific actions
referring to them under each action line.
This Action Plan acknowledges that anti-discrimination policy, administrative machinery,
resources, demography, etc., differ from country to country. It therefore allows member
states to decide national priorities and to take a progressive approach to implementation by
whatever means are appropriate to them.
1 Framework for the qualitative and quantitative analysis of data on the ageing of people with disabilities,
Council of Europe Publishing, Strasbourg, 1998, ISBN 92-871-3327-1.
265
It is intended that when implementing the specific actions contained within this Action Plan,
that member states will take full account of:
–
the principles underpinning the Action Plan, including in particular the rights of
individuals to protection against discrimination, to equal opportunities and to the respect of
their rights as citizens;
–
cross-cutting aspects including the specific needs of women and girls with
disabilities, children and young people with disabilities, people with disabilities in need of a
high level of support, ageing people with disabilities, migrants with disabilities and people
with disabilities from minorities, in addition to the crucial role that quality services and
training play in relation to the provision of services to people with disabilities;
–
the involvement of representative disability organisations in all stages of
implementation, monitoring and evaluation at European, national, regional and local levels
which is considered a key element.
5.1.1.
Universal Design
Equality of access is essential for the development of a fully inclusive society. The design of
buildings, the environment, products, communication and electronic systems is particularly
important to facilitate the participation and independence of people with disabilities in all
aspects of life.
Universal Design is an effective way to improve the accessibility and the quality of the built
environment, services and products. It focuses on the importance of ensuring that design of
the environment, buildings and everyday products is right from the start rather than
adapting them at a later stage. Whilst it may not always be possible to make older or historic
buildings completely accessible, there are still too many obstacles that impede disabled
people from taking part in all aspects of society and making use of all its facilities.
Promoting the principle of Universal Design, its wide application and user participation in
all design stages is of paramount importance for improving the accessibility of the built
environment, transport and communication systems and the usability of products.
5.1.2.
Quality of services and training of staff
Quality and training are key principles which underpin the action lines in this Plan. Many
European countries are already systematically working on improving quality of services and
training of staff and personnel. It is considered essential that all policies, services and actions
be underpinned by high quality standards and delivered by competent, trained personnel.
People with disabilities should be the focal point of the services provided. Client satisfaction
should be the primary motivation for viable quality policies. It is vitally important that
people with disabilities, the service users, should be active participants in quality assurance
and monitoring of services.
Training is also an essential element of quality service. This not only includes appropriate
training for the personnel involved in service delivery, both disability specific and
mainstream services, but also for those who have a role in developing policies which affect
the lives of people with disabilities. Training should incorporate awareness of the human
rights of people with disabilities.
266
5.1.3.
Mainstreaming or sector responsibility
A mainstreaming approach, or sector responsibility, in policy development and service
delivery plays an important role in promoting a more inclusive society and is a key,
underlying principle of this Action Plan. Mainstreaming involves the integration of services
for people with disabilities with those for other citizens. The goal is to move away from
policies which support segregation towards integration in the mainstream wherever
possible. However, mainstreaming does not preclude the existence of disability-specific
policies, where they are in the best interests of persons with disabilities (the so called twintrack approach).
In practice this approach means that disability policies are no longer seen as solely the
responsibility of a specific ministry or department. It is the responsibility of all ministries to
ensure that their initiatives take into account the rights of persons with disabilities. Coordination across and between government sectors and the creation of a focal point for all
disability issues should be promoted to enhance and develop the mainstream approach.
5.2.
Implementation
The governments of member states have the primary responsibility for implementing
disability policies at national level, and in particular for implementing the specific actions
referring to them under each action line.
Member states should start with an evaluation of their existing disability policy programmes
and underlying basic principles against the blueprint of the Council of Europe Disability
Action Plan to identify in which areas progress has yet to be made and which specific
actions will have to be carried out.
Based on that evaluation member states should set up strategies to ensure that their own coordinated disability policy programmes, strategies and actions are progressively advanced
in line with the Council of Europe Disability Action Plan and national financial resources.
The prioritisation and the establishment of a timetable to progress measures outlined are the
responsibilities of each member state.
It is important that the implementation of the Plan by member states is supported by a coordinated approach involving relevant stakeholders, including non-governmental
organisations of people with disabilities, as appropriate.
As part of the implementation, member states should consider the issue of the definition of
disability, as appropriate.
Member states will translate the Action Plan into their official languages and make these
translations available in alternative formats. Member states will promote the Action Plan
involving all relevant stakeholders in order to ensure long-term support.
Upon request, the Council of Europe will assist member states with implementing the
Action Plan. Member states should consider co-operation with the Council of Europe
Development Bank (CEB) and present bankable projects aimed at implementing the Action
Plan at national level.
267
5.3.
Follow-up
The governments of member states have the primary responsibility for the follow-up to be
given to the Council of Europe Action Plan at national level, where they decide on
appropriate review and follow-up arrangements. To that end, member states should consult
with relevant stakeholders, in particular non-governmental organisations of people with
disabilities.
At European level, the follow-up of this Action Plan should focus on strengthening cooperation in the field of disability and should allow for effective exchange of information,
experience and best practice in a structured way.
Effective follow-up to this Action Plan requires member states to regularly provide the
Council of Europe with relevant information. In that context, national government reports to
parliament, as well as reports and surveys provided by non-governmental organisations, are
of particular interest and relevance.
The forum designated to follow up the Action Plan will manage that process, including the
necessary procedures, the establishment of a timetable and a possible mid-term review.
This forum could suggest to member states specific priority issues to be analysed in depth. It
will ensure that the Committee of Ministers is regularly informed about progress made in
the implementation of this Action Plan.
International non-governmental organisations of people with disabilities will participate in
this process within the given rules of procedure. Furthermore, other relevant stakeholders
could be invited to contribute to the process, in a way to be specified in the terms of
reference for the designated forum.
Appendix 1 to the Action Plan
Malaga Ministerial Declaration on People with disabilities
“Progressing towards full participation as citizens”
(Adopted at the Second European Conference of Ministers
responsible for integration policies for people with disabilities,
Malaga, Spain, 7-8 May 2003)
1.
We, the Ministers responsible for integration policies for people with disabilities,
gathered from 7 to 8 May 2003 in Malaga on invitation of the Spanish Government, at the
Second European Conference of Ministers, organised by the Council of Europe,
1. Aware of:
2.
the Council of Europe’s aim, as enshrined in its Statute, is “to achieve greater unity
between its members for the purpose of safeguarding and realising the ideals and principles
which are their common heritage and facilitating their economic and social progress”;
268
3.
the outcome of the first Conference of Ministers responsible for policies for people
with disabilities, held in Paris, 7 and 8 November 1991, entitled “Independent Living for
people with disabilities”, which led the Committee of Ministers of the Council of Europe to
adopt Recommendation No. R (92) 6 on a coherent policy for people with disabilities;
4.
the fact that protection and promotion of human rights and fundamental freedoms,
and their full enjoyment are essential for the active participation of people with disabilities
in society, and that the principle of equality of opportunities for people with disabilities
represents a basic value shared by all Council of Europe member states;
5.
the contribution of the European disability movement to the Council of Europe
Second Ministerial Conference on disability “From words to deeds”, adopted at the
European NGO Forum on 8 April 2003 in Madrid;
6.
the existence of substantial variations among Council of Europe member states as
regards their political, economic and social situation and of the fact that a number of
countries, particularly those with economies in transition, may be less well equipped to meet
the demands of modern disability policies and need more advice and further assistance;
7.
the fact that policies for people with disabilities are faced with certain political,
economic, social, demographic, cultural and technological challenges, since, in the last
decade, Europe has been undergoing various changes, which affect the quality of life of the
population and raise multiple challenges whilst offering new opportunities for the
development of coherent policies for people with disabilities;
8.
the fact that two aspects are especially relevant in relation to people with disabilities:
on the one hand, the increasing number of the European elderly population, which must be
taken into account in any future strategy for social cohesion, based on prevention of
dependency on support services over the life course and preservation of quality of life in old
age; on the other hand, the fact that, as result of scientific advances in the health field and
the improvement of living conditions, persons with physical and mental impairments live
longer and fuller lives, generating new needs in relation to the provision of services,
economic support and protection of their human rights;
9.
the fact that 2003 has been proclaimed European Year of People with Disabilities by
the European Union, and that its main aim is to raise awareness of the rights of people with
disabilities to equal opportunities and promote full and equal enjoyment of these rights;
10.
the works of the UN Ad Hoc Committee “to consider proposals for a comprehensive
and integral international convention to promote and protect the rights and dignity of
persons with disabilities”;
11.
the work carried out by the Council of Europe Committee on the Rehabilitation and
Integration of People with disabilities, enhancing intergovernmental co-operation in the
framework of the Partial Agreement in the Social and Public Health Field;
12.
the achievements of the Council of Europe and other international organisations,
institutions or events as listed in the Appendix to this Declaration;
269
2. Reaffirm:
13.
our commitment to securing human rights and fundamental freedoms for everyone
under our countries’ jurisdiction, as set out in the European Convention on Human Rights,
and that all human beings are born free and equal in dignity and rights, and with a potential
to contribute constructively to the development and well-being of society, and that all
persons are equal before the law and entitled to equal protection of the law;
14.
that arrangements for the full and effective implementation of all human rights, as
enshrined in European and other international human rights instruments, must be
applicable without any discrimination or distinction on any ground, including disability;
15.
our will expressed in the 1st Conference of Ministers responsible for policies for
people with disabilities, held in Paris in 1991, to promote a coherent and integrated policy
for persons with disabilities, and that Recommendation No. R (92) 6 on “A coherent policy
for people with disabilities” has inspired countries to adopt legislative and policy measures
leading to progress on the way to full participation, and that it is a basic reference document
which should serve as a platform for future action;
16.
that enhancing citizenship and full participation of people with disabilities requires
empowerment of the individual so that he/she can take control of his/her own life, which
may require specific support measures;
3. Consider:
17.
that our main aim in the next decade is to improve the quality of life of people with
disabilities and their families, putting the emphasis on their integration and full
participation in society, since a participative and accessible society is of benefit to the whole
population;
18.
that measures aimed at improving the quality of life of people with disabilities
should be based on a sound assessment of their situation, potential and needs, developing
innovative approaches in services, taking account of their preferences, entitlements and
circumstances;
19.
that appropriate strategy to reach this aim should be expressed in a future Action
Plan to promote the elimination of all forms of discrimination against people with
disabilities of all ages, with special focus on disabled women and people with disabilities in
need of a high level of support, so that they will all be able to enjoy their human rights,
fundamental freedoms and full citizenship;
20.
that it is necessary to adopt an integrated approach towards the elaboration of
national and international disability policies and legislation, and to duly reflect the needs of
people with disabilities in all relevant fields of policies, particularly in key areas such as
access to housing, education, vocational guidance and training, employment, the built
environment, public transport, information, health care, and social protection;
21.
that it is a basic objective to develop economic, social, educative, employment,
environmental and health measures in order to maintain every disabled individual’s
maximum capacity over the life course and in order to help prevent disability;
270
22.
that education is a basic instrument of social integration and efforts should be made
to give the opportunity to children with disabilities to attend a mainstream school, if it is in
the interest of the child, to facilitate the transition from school or higher education to
employment, and to develop the concept of life-long learning;
23.
that equality of access to employment is a key element for social participation;
therefore progress should be made towards the integration of people with disabilities in the
labour market, preferably in the open market, shifting our focus to assessing abilities and
implementing active policies, and that having a diverse workforce by promoting access of
people with disabilities in the ordinary labour markets is an added value for society;
24.
it vital to understand the social nature of technology and to make the best use of the
potential of new technologies, with the aim of increasing autonomy and interactions of
people with disabilities in all areas of life;
25.
that as a result of scientific advances in the health field and the improvement of
living conditions, persons with physical, psychological and intellectual impairments live
longer, generating new needs and challenges in relation to the provision of care services,
which should be met with innovative approaches;
26.
the need to ensure that the benefits of living longer do not result in an increasingly
higher number of persons dependent on support services, by fostering, among the
population from an early age, healthy habits and life conditions which enable a good state of
physical and mental health at a later stage in life;
27.
that progress is required to provide for the removal of barriers and the adoption of
the Universal Design principle to ensure that new barriers are not created;
28.
that there is a small but growing number of people with disabilities in need of a high
level of support and we therefore recognise the need to strengthen structures around those
individuals and their families without departing from a model of community-based services;
29.
that the situation of women with disabilities in Europe deserves higher visibility and
more specific attention in order to guarantee their independence, autonomy, participation
and social integration and that action taken should support a gender mainstreaming
approach to disability policy development;
4. Undertake:
30.
to work within anti-discriminatory and human rights frameworks towards
mainstreaming equality of opportunity for people with disabilities throughout all policy
areas;
31.
not to discriminate on the grounds of the origin of the disability or the identity of
people with disabilities person;
32.
to enhance the possibilities of people with disabilities to carry on an independent life,
within the community, through the progressive adoption of the principles of inclusive
technologies and Universal Design inter alia in the building of environments, public
facilities, communication systems and housing;
271
33.
to work towards strengthening co-ordination across and between government
departments; with a particular commitment to promoting equity in mainstream service
provision, health care and the legal system as well as improving accountability between
local, regional and national areas of responsibility;
34.
to promote the provision of quality services, responding to the needs of individuals
with disabilities which are accessed via published eligibility criteria, based on thorough and
equitable assessment, shaped by people with disabilities person’s own choices, autonomy,
welfare and representation, with proper safeguards, regulation and access to independent
adjudication of complaints, and to consolidate and strengthen measures already in place;
35.
to champion the inclusion of people with disabilities in all walks of life through
education and by making a commitment to people with disabilities as citizens with control
over their life;
36.
to progress the integration of people with disabilities into the labour market by
moving the focus to assessing abilities, in particular vocational abilities, and by making
vocational guidance and training as well as employment more accessible;
37.
to take full account of the needs of children with disabilities and their families as well
as of elderly people with disabilities without detracting from the current commitments to
disabled adults of working age, whether or not they are in employment, noting that
employment cannot be allowed to stand as the only measure of citizenship, arena for
participation and route to human dignity;
38.
to continue supporting basic and applied scientific research particularly in the area of
new information and communication technologies, in order to improve aids that enable
interactive participation in all areas of life;
39.
to implement the means necessary for an effective balancing of opportunities
between men and women and active participation of persons with disabilities, with special
focus on women and girls within the areas of education and training, employment, social
policy, participation and decision-making, sexuality, social representation, motherhood,
home and family life, and on prevention of violence;
40.
to carry out further analyses of the scope of measures and provisions that would
effectively improve community living for people with disabilities in need of a high level of
support, and to collect the statistical data necessary for the definition and evaluation of
disability policies;
41.
to have the needs of families of children with disabilities carefully assessed by the
responsible authorities with a view to providing measures of support to enable children to
grow up with their families, to be included in local children’s life, and to receive an
education;
42.
to have the needs of families as providers of informal care thoroughly assessed,
especially those with children with disabilities or caring for persons in need of a high level
of support, with a view to providing measures of information, training and assistance,
including psychological support, to enable life within the family;
272
43.
to work on the development of programmes and resources to meet the needs of
persons with disabilities as they age;
44.
to foster among the population from early age health habits and life conditions in
order to reach active ageing in the highest attainable standard of physical and mental health;
45.
to work towards the development of a positive image of people with disabilities in
co-operation with various stakeholders, including the media;
46.
to involve people with disabilities in decisions affecting them personally, and
organisations of people with disabilities in policy making, paying special attention to people
with multiple disabilities or complex disorders and those who are unable to represent
themselves;
47.
to promote the involvement and collaboration of the social partners and all other
public and private stakeholders and actors involved in policy-making;
5. Recommend:
48.
that the Committee of Ministers of the Council of Europe continues to promote
policies aimed at ensuring full citizenship and active participation of people with
disabilities, with the full participation of all member states, and to strengthen the role of the
Council of Europe as a platform for international co-operation in the field of disability
policy-making by inviting the Committee on the Rehabilitation and Integration of People
with disabilities and other relevant Council of Europe committees to further mainstream
disability policies within their areas of competence;
49.
the elaboration, taking into account the considerations raised at this Ministerial
Conference, of a Council of Europe Action Plan for people with disabilities: a new European
policy framework for the next decade, based on human rights and partnership between
different actors, setting up strategic objectives and priority issues in order to achieve full
citizenship and active participation of people with disabilities in the life of the community,
through workable, affordable and sustainable policies;
50.
that the Council of Europe plays an active role in the negotiations in the context of
the forthcoming sessions of the United Nations Ad hoc Committee established “to consider
proposals for a comprehensive and integral international convention to promote and protect
the rights and dignity of persons with disabilities”, by making use of the Council’s extensive
experience in human rights matters;
6. Invite:
51.
all Council of Europe member and observer states and representatives from
European non-governmental organisations to participate in the activities and work of the
Council relating to the enhancing of a coherent policy for and through full participation of
7. Wish:
52.
to share the beliefs, values and principles concerning the human rights and
fundamental freedoms of people with disabilities, as well as full citizenship and active
273
participation in the life of the community, set out in this Declaration of European Ministers,
and identified as common European features, with everybody, including people outside
Europe.
***
Finally, we thank the Spanish authorities for the excellent organisation of the Conference
and for their generous hospitality.
274
Appendix 2 to the Action Plan
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Promoting equal opportunities and access to employment for people with disabilities
(20 January 2003);
Contribution of the European disability movement to the Council of Europe Second
European Conference on disability “From words to deeds”, adopted at the European NGO
Forum on 8 April 2003 in Madrid.
279
APPENDIX 3
LIST OF PARTICIPANTS
MEMBER STATES
ALBANIA
Mr Kosta BARKA
Minister
Ministry of Labour, Social Affairs and Equal Opportunities
Rr Uga "Kavases", N 53
AL-TIRANA
Mrs Poni MERITA
Adviser to the Minister
Ministry of Labour, Social Affairs and Equal Opportunities
Rruga "Kavajes" nr 53
AL-TIRANA
ARMENIA
Ms Jemma BAGHDASARYAN
Head of Elderly and Disabled Issues Department
Ministry of Labour and Social Issues of RA
Government House 3
AM-0010 YEREVAN
AUSTRIA
Mr Robert BECHINA
Expert
Federal Ministry of Social Security, Generations and Consumer Protection
Stubenring 1
A-1010 VIENNA
BELGIUM
Ms Chaterine MOLLEMAN
Head Research Depatment
Vlaams Agentschap voor Personen met een Handicap
Sterrekundelaan 30
B-1210 BRUSSELS
BULGARIA
Ms Liliyana ELITCINA-ATANASSOVA
Head of Unit "Integration of People with disabilities"
Ministry of Labour and Social Policy
2 Triaditza Street
BG-1051 SOFIA
281
Mrs Elitsa SLAVCHEVA
Chief expert in Directorate for European Integration and International Relations
Agency for Social Protection - Ministry of Labour and Social Policy
2 Triaditza Street
BG-1051 SOFIA
Ms Darinka STANTCHEVA
Member of Parliament
National Assembly
1 Alexander Battenberg Sq.
BG-1169 SOFIA
CROATIA
Mr Ivic TOMISLAV
State Secretary of the Ministry
Ministry of the Family, Veterans' Affairs and Intergenerational solidarity
Park Stara Tresnjevka 4
HR-ZAGREB
Mr Bozo KOVACEVIC
Ambassador
Embassy of the Republic of Croatia to the Russian Federation
Korobeinokov Per, 6/10
RUS-119 034 MOSCOW
RUSSIAN FEDERATION
CYPRUS
Mr Andreas DEMOSTHENOUS
Labour officer
Ministry of Labour and Social Insurance
Klimentos 9 Str.
CY-1480 NICOSIA
ESTONIA
Mr Jaak AAB
Minister of Social Affairs
Estonian Ministry of Social Affairs
Gonsiori 29
EST-15027 TALLINN
Ms Monika SARAPUU
Adviser
Estonian Ministry of Social Affairs
Gonsiori 29
EST-15027 TALLINN
282
FINLAND
Ms Tertuu SAVOLAINEN
State Secretary
PO Box 33
FIN-00023 HELSINKI
Ms Viveca ARRHENIUS
Ministerial Adviser
PO Box 33
FIN-00023 HELSINKI
Mr Pekka TUOMINEN
President
Finnish Association of People with Mobility Disabilities
Kumpulantie I A
FIN-00520 HELSINKI
FRANCE
Ms Sophie JACQUOT-GAUTUN
Chef du bureau de l'enfance handicapée
Ministère de la Santé
11 place des cinq martyrs du Lycée Buffon
F-75696 Cedex 4 PARIS
Mr Marc MAUDINET
Directeur
Centre Technique National d'Etudes et de Recherches sur les handicaps et les inadaptations
236 bis rue de Tolbiac
F-75013 PARIS
GERMANY
Dr Hartmut HAINES
Head of Unit
Federal Ministry of Labour and Social Affairs
Rochusstr. 1
D-53107 BONN
Dr Erich KNUELLE
Senior Medical Officer
Ford Werke GmbH
Henry Ford Strasse 1
D-50725 KOLN
283
HUNGARY
Ms Edit RAUH
Under-Secretary of State
Ministry of Social Affairs and Labour
Alkotmany ut 3
H-1054 BUDAPEST
ICELAND
Mr Thor THORARINSSON
Director of Family Affairs Department
Ministry of Social Affairs
Hafnarhusinu vid Tryggvagötu
IS-150 REYKJAVIK
Ms Rannveig TRAUSTADÓTTIR
Professor
Faculty of Social Science
University of Iceland
IS-REYKJAVIK
IRELAND
Mr Jim McCAFFREY
Assistant Secretary
Department of Justice, Equality and Law Reform
Bishop's Square, Redmond Hill
IRL-2 DUBLIN
LATVIA
Mrs Dagnija STAKE
Minister of Welfare
Ministry of Welfare
28 Skolas Street
LV-1331 RIGA
LITHUANIA
Ms Danute VAINICKIENE
Deputy Head of the Division of Equal Opportunities
Ministry of Social Security and Labour
A. Vivulskio 11
LT-03610 VILNIUS
284
THE NETHERLANDS
Ms Gerritdina Johanna HUISMAN
Senior Policy Adviser
Ministry of Health, Welfare and and Sport
PO Box 20350
NL-2500 EJ THE HAGUE
Mr Hans SLUITER
Consultant
Debussyrode 11
NL-2717 BN ZOETERMEER
NORWAY
Ms Laila GUSTAVSEN
State Secretary
Ministry of Labour and Social Inclusion
PO Box 8019 Dep.
N-0030 OSLO
Ms Therese AALBERG
Adviser
Ministry of Foreign affairs
PO Box 8114 DEP
N-0032 OSLO
Ms Ingunn AALVIK
Assistant Director General
Ministry of Health and Care Services
PO Box 8011 Dep
N-0030 OSLO
Mr Georg Hilmar ANTONSEN
Adviser
PO Box 8019 Dep
N-0030 OSLO
Mr Sigmund ASMERVIK
Professor
Norwegian University of Life Sciences
PO BOX 5003
N-1432 AS
Ms Marianne BIE
Clinical nurse specialist and family therapist
Baerum outpatient clinic for children and youth psychiatry
Lysaker Brygge 2
N-1366 LYSAKER
285
Ms Anna BJORSHOL
Head of Section
Norwegian Directorate for Children, Youth and Family Affairs
Universitetsgt 7
PO Box 8113 Dep
N-0032 OSLO
Ms Grete S. BORMER
Senior Adviser
Ministry of Education and Research, Department
of Education and Training
PO Box 8119 DEP
N-0032 OSLO
Mr Bjorn Magne BREDESEN
Royal Ministry of Children and Equality
PO Box 8036 Dep.
N-0030 OSLO
Ms Kari BRUSTAD
Norwegian Ministry of Education and Research
PO Box 8119 Dep
N-0032 OSLO
Mr Knut CHRISTOPHERSEN
PO Box 8019 Dep.
N-0030 OSLO
Ms Eli DVERGSNES
Sr. Advisor, Rehabilitation Dept.
Norwegian Association of the Blind and Partially Sighted
PO Box 5900 Majorstua
N-0306 OSLO
Mr Gunnar Nils FOLLESSO
Department of Specialised Health Services
Einar Gerhardsens pl 3
N-0030 Dep OSLO
Mr Unn HAGEN
Head of Rehabilitaion
Norwegian Association of the Blind and Partially Sighted
PO Box 5900 Majorstua
N-0308 OSLO
286
Ms Gerd Juel HOMSTVEDT
Senior Adviser
Einar Gerhardsens Pl 3
PO Box 8011 Dep.
N-0030 OSLO
Ms Hanne Karen Ramstad JENSEN
Senior Adviser
Einar Gerhardsens pl 3
N-0030 OSLO
Mr Stephan MO
PO Box 8019 Dep.
N-0030 OSLO
Ms Tove Eikrem MORK
Senior Adviser
The National Center for Documentation on Disability
PO Box 3223 ELISENBERG
N-0208 OSLO
Ms Gerd NORDAHL
Student
Diakonhjemmet University Collaege
PO Box 184 Vinderen
N-0319 OSLO
Ms Elin OSTLI
Adviser
Directorate of Health and Social Affairs
Department of Rehabilitation and Rare Disorders
PO Box 7000, ST. Olavs Plass
N-0130 OSLO
Mr Olav ROGER
Head of Technical Aids Centre
Technical Aids Centre Oslo
Peter Mollersvei 15
N-0614 OSLO
Mr Morten SCHAU
Senior Adviser
Royal Ministry of Children and Equality
PO Box 8036 Dep
N-0030 OSLO
287
Ms Ellinor Joan SUNDSETH
Head of Secretariat
The Norwegian State Council on Disability
PO Box 7075
St. Olav's Plass
N-0130 OSLO
Mr Wilhelm TORHEIM
Ministry of Environment
PO Box 8013 Dep
N-0030 OSLO
Mr Jan TØSSEBRO
Professor
Norwegian University of Science and Technology
N-7491 TRONDHEIM
POLAND
Mrs Anne KALATA
Minister of Labour and Social Policy
Ministry of Labour and Social Policy
1/3/5 Nowogrodzka str.
PL-00-513 WARSAW
Ms Malgorzata KIELDUCKA
Adviser to the Minister
Ministry of Labour and Social Policy, Office of the Government Plenipotentiary for disabled
people
4 Glaczynskiego str.
PL-00-362 WARSAW
Mr Jaroslaw DROZD
Consul General
Consulate General fo the Republic of Poland in St Petersburg
5a Sowietskaja 12/14
RUS-191036 ST PETERSBURG
PORTUGAL
Ms Idalia MONIZ
Secretary of State
Ministry Labour and Social Solidarity
Praça de Londres, 2,14
P-1049-056 LISBOA
288
Ms Luisa PORTUGAL
National Secretary
National Secretariat for the Rehabilitation and
Integration of People with Disabilities
Av. Conde Valbom 63
P-1069-178 LISBON
ROMANIA
Ms Gabriela DOBRE
Senior Counsellor
National Authority for Persons with Handicap
Calea Victerdi 194
RO-BUCURESI
RUSSIAN FEDERATION
Representatives of Federal Executive Authorities
Mr Mikhail Zurabov
Minister of Health & Social Development of the Russian Federation
Ms Liubov Glebova
Secretary of State – Deputy Minister of Health and Social Development of the Russian
Federation
Mr Ivan Dubov
Director, Department for International Cooperation and Public Relations, Ministry of Health
and Social Development of the Russian Federation
Mr Andrey Panov
Deputy Director, Department for Development of Social Security, Ministry of Health and
Social Development of the Russian Federation
Ms Elena Volokhova
Deputy Director, Department for International Cooperation and Public Relations, Ministry
of Health and Social Development of the Russian Federation
Ms Alla Tarasevich
Head of the Division, Department for International Cooperation and Public Relations,
Ms Nina Shakhina
Head of the Division, Department for Medical and Social Problems of Family, Motherhood
and Childhood, Ministry of Health and Social Development of the Russian Federation
Ms Elena Vokach-Boldyreva
Advisor, Department for International Cooperation and Public Relations, Ministry of Health
and Social Development of the Russian Federation
289
Mr Ilya Lebedev
Deputy Head, Federal Agency for Health & Social Development
Mr Boris Beliavskiy
Department for Youth Policy and Upbringing and Social Security of Children, Ministry of
Education and Science of the Russian Federation
Mr Igor Vikodez
Deputy Head, Directorate for Sport, Federal Agency for Physical Training and Sport
Mr Alexander Krotov
Deputy Head of Department of Health Care and Health Resort
Representatives of Public Authorities from Regions
Mr Valery Paljkin
Head, Committee for Labour & Social Development of the Murmansk Region
Ms Vera Senyukova
Deputy Minister of Health & Social Development of the Republic of Karelia
Mr Gennadi Yakimov
Head, Department for the Social Development of the Kirovsk Region
Mr Lev Sherbakov
Deputy Minister of Health and Social Development of the Russian Federation
Ms Klavdiya Novikova
Minister of Social Security of the Republic of Tatarstan
Mr Igor Vlasov
Deputy Head on Agency of Social Affairs of the Republic of Komi
Mr Sergei Arzhanikov
Deputy Head, Principal Directorate for Social Development and Labor of the Pskov Region
Ms Evgenia Smirnova
Deputy Head, Department for Labour and Social Development, Administration of the
Vologda Region
Mr Valery Vakulenko
Deputy Head, Directorate for Social Security of Population, Administration of the
Arkhangelsk Region
Mr Alexander Dubonosov
Chairman, Committee for Labour and Social Security of Population of the Novgorod Region
Mr Nikolai Pustotin
Vice-governor of the Leningrad Region
Mr Sergei Krivko
290
Head, Department for Social Development of the Smolensk Region
Mr Andrei Kasjyanov
Head, Division for Social Support & Aid to Population, Department for Social Development
of the Smolensk Region
Ms Nina Filippova
Vice-Chairman, Committee for Labour and Social Security of Population of the
Leningradskaya oblast
Ms Tatiana Stepanova
Chief of Division Committee for Labour and Social Security of Population of the
Leningradskaya oblast
Mr Vitaly Gladov
Chief of division, Ministry of Labour and Social Policy of the Kaliningradskaya oblast
Representatives of All-Russian NGOs for People with Disabilities
Mr Valery Rukhledev
President, All-Russian Association for the Deaf
Mr Vadim Ivanchenko
Head, Department for International Cooperation, Board of the All-Russian Deaf Association
Mr Alexander Lomakin-Rumyanstev
Chairman, All-Russian Association for People with Disabilities
Mr Eugene Tolokonnikov
Assistant to the Chairman, All-Russian Association for People with Disabilities
Mr Alexander Neumyvakin
President, All-Russian Association for the Blind
Ms Natalya Samsonova
Assistant to the Chairman, All-Russian Association for the Blind
Mr Pavel Rozhkov
Chairman of the Executive Committee – First Vice-President, Parolimpic Committee of
Russia
Ms Larisa Papusheva
Parolimpic Committee of Russia
Representatives of the Federal Bureau for Medical Commission, Rehabilitation Centers
and Other Organizations for People with Disabilities
Mr Sergei Puzin
Head, Federal Bureau for Medical Commission of People with Disabilities
Ms Lidia Sinitcyna
291
Director, Inter-regional Rehabilitation Centre for People with Hearing Disabilities,
St. Petersburg
Ms Galina Epifanova
Director, Institution for Deaf-and-Blind Children, the city of Sergiev-Posad (Moscow region)
Mr Lev Sytin
General Director, R&D Centre for Medical Commission and Social Rehabilitation of People
with Disabilities, the city of Novo-Kuznetsk
Mr Igor Shvedovchenko
General Director, the Albrecht R&D Centre for Commission, Prosthetics and Rehabilitation
of People with Disabilities, St. Petersburg
Mr Mihail Korobov
Rector, Institute for Postgraduate Training of Physicians-Experts
Ms Irina Lotova
Deputy Director, Research Institute for Family and Upbringing
Mr Mikhail Dimochka
Deputy Head, Federal Bureau for Medical Commission of People with Disabilities
Ms Tatyana Murzina
Institute for Postgraduate Training of Physicians-Experts
Heads of Institutions for Social Rehabilitation of People with Disabilities from Regions
Ms Natalya Ivannikova
Director, the Voronezh Region Rehabilitation Centre for children and adolescents with
disabilities
Mr Alexander Filenkov
Director, the Orel Region Centre for Social Prevention and Rehabilitation of People with
Disabilities
Ms Nataljya Shandyba
Director, Centre for Comprehensive Services to Population, the city of Tver
Mr Ivan Malafeev
Deputy Director of the Moscow Region Rehabilitation Centre for People with Disabilities
Ms Olga Pestova
Director, Centre of Social Support to Family and Children, the Tambov Region
Ms Elena Khudenko
Director, Centre of Social Support, Moscow
Heads of Educational and Vocational Schools for People with Disabilities
Mr Ivan Brykov
292
Director, Boarding (Mihailovsky) College of Economics, the Ryazan Region
Mr Yuri Mashkov
Director, Boarding (Kalachevsky) Technical School, the Volgograd region
Mr Nikolai Agarkov
Director, the Novo-Kuznetsk Humanitarian Boarding College
Ms Tatyana Katkova
Deputy Director, the Uljyanovsk Pharmaceutical College
Mr Vagif Bayramov
Rector
Heads of Regional NGOs for People with Disabilities
Ms Natalya Regina
Director, Director of Projects, the Charity Fund “Downside Up”, the city of Moscow
Ms Margarita Urmancheyeva
President, Association of NHOs for Parents and Handicapped Children.
Mr Oleg Danilov
General Director, National Association of Hospital Feeding
Ms Natalya Poblavnaya
All-Russian Association for the Deaf, St.Petersburg
Legislative Public Authorities
Mr Valeriy Asikritov
Chairman, Legislative Assembly of the city of St. Petersburg
Mr Alexandr Demin
Chairman of Permanent Commission on Social Affairs
Mr Pavel Soltan
Deputy Chairman of Permanent Commission on Social Affairs
Executive Public Authorities:
Ms Lyudmila Kostkina
Vice-governor of St. Petersburg
Mr Alexander Rzhanenkov
Chairman, Committee on Labour & Social Security of Population
Ms Galina Kolosova
Deputy Chairman, Committee on Labour & Social Security of Population
Ms Tatyana Shelomanova
293
Head, Division for Methodological Management of Rehabilitation Issues
Mr Vladimir Zholobov
Deputy Chairman of the Committee on Health
Ms Faina Sisoyeva
Specialist, the Committee on Physical Training & Sport
Ms Irina Geratshenkova
Head, the Committee on Education
Mr Alexander Viktorov
Chairman, Committee on Science & Higher school
Ms Nataljya Zalukaeva
Advisor to the Vice-governor of St. Petersburg
Mr Alexander Abrosimov
Head/chief expert, Central St. Petersburg Bureau for Medical Commission
Ms Lyudmila Deeva
Manager, St. Petersburg Regional Division, Fund of Social Insurance of the Russian
Federation
Mr Pavel Pankratov
Head, Directorate for Employment
Educational and Research Institutions:
Mr Vladimir Shestakov
Deputy Head, the St. Petersburg Albrecht R&D Centre for Commission, Prosthetics and
Rehabilitation of People with Disabilities, Federal Agency for Health & Social Development
Ms Margarita Masanova
Professor, Chair of Social Work, “North-East Academy for Public Service” (the
St. Petersburg Institution of High Professional Training)
Mr Roman Kostin
Pro-rector, the St. Petersburg Academy of Service & Economics (Institution for High
Professional Training)
Mr Vitaly Kantor
Dean, Faculty for Corrective Pedagogics, the Hertsen Pedagogical Institute
Ms Ludmila Shipitsina
Rector, the St. Petersburg Non-Government Institution of High Professional Training
“Institute of Social Pedagogics & Psychology”
Ms Ludmila Verbitskaya
Rector, the St. Petersburg University
294
Ms Natalya Platonova
Rector, the St. Petersburg Institute of Psychology & Social Work
Mr Sergey Gutnikov
Director, the St. Petersburg Research Institute of Physical Training
Mr Alexander Lapotnikov
Director,Centre, the St. Petersburg Mechnikov Medical Academy
Mr Mihail Didur
Professor, dean of the Faculty for Sport Medicine & Adaptive Physical Training, the
St. Petersburg Pavlov Medical University
Ms Elena Kozhevnikova
Director, Non-Government Institution for Refresher Courses, “The St. Petersburg Institute of
Early Intervention”
Rehabilitation Institutions
Mr Gennady Ivanov
Director, the St. Petersburg Public Vocational & Rehabilitation Technical School for People
with Disabilities
Ms Yulia Gusak
Director, the St. Petersburg Public Centre for Social Rehabilitation of People with Disabilities
Ms Tamara Velikanova
Director, the St. Petersburg Public Rehabilitation Centre for People with Visual Disabilities
Mr Alexander Moiseev
Deputy Head, the St. Petersburg Centre for Rehabilitation Through the Use of Technical
Devices, Access to City Environment and Physical Training
Ms Natalya Medvedeva
Director, Centre for Social Rehabilitation of Children and Adolescents with Disabilities, the
Vyborg district of St. Petersburg
Ms Irina Makedonova
Director, Centre “Support” for Social Rehabilitation of Children and Adolescents with
Disabilities, the Kolpinski district of St. Petersburg
Ms Natalya Makarova
Director, Centre for Social Rehabilitation of Disabled Children, the Krasnogvardeisky
district of St. Petersburg
NGOs
Mr Leonid Fionin
Chairman, the St. Petersburg Division of the
Disabilities
All-Russian Association for People with
295
Ms Galina Kolosova
Deputy Chairman, Committee on Labour and Social Security of Population
Ms Nadejda Tukilush
Head of the Department for Rehabilitation in the St. Petersburg Region VOS
Ms Olga Novoselova
Chairman, the St. Petersburg Division of the All-Russia Association for People with Hearing
Disabilities
Mr Yuri Kuznetsov
President, Regional Association for Independent Life of People with Disabilities “We are all
together”
SERBIA
Mrs Sladjana MARKOVIC
Deputy Minister
Department of Protection of People with disabilities
Ministry of Labour, Employment and Social Policy
22-26 Nemanjina Street
11000 BELGRADE
SLOVENIA
Ms Spela KOLAR
Senior Adviser
Ministry of Labour, Family and Social Affairs
Kotnikova 5
SLO-1000 LJUBLJANA
SPAIN
Mr Pascal De La PARTE
Secretary of State for Social Services, Families and Disability
Ministry of Labour and Social Affairs
Agustin de Bethencourt 4
E-28071 MADRID
SWEDEN
Mr Lars LOOW
Head of Office
Handicap Ombudsman of Sweden
Box 49132
S-100 29 STOCKHOLM
Ms Kerstin ODMAN
Deputy Director
Ministry of Health and Social Affairs
S-130 33 STOCKHOLM
296
Ms Marianne OLESEN
Project Manager
Nordic Co-operation on Disability, NSH
Box 510
S-162 15 VÄLLINGBY
Ms Bit TARDINI
Consultant
NOPUS
Box 4156
S-203 12 MALMO
UKRAINE
Mr Viktor DIACHENKO
Deputy Minister of Labour and Social Policy
Ministry of Labour and Social Policy of Ukraine
8/10 Esplanadna Street
UA-01001 KYIV
UNITED KINGDOM
Ms Celia REED
Head of Projects
Department for Work and Pensions
6th Floor, Adelphi, 1-11 John Adam Street
GB- LONDON WC2N 6HT
Mr Richard TIMM
Head of Disability Rights International Team
Department for Work and Pensions
6th floor, Adephi, 1-11 John Adam Street
GB- LONDON WC2N 6HT
FRIENDS OF THE CHAIR
Ms Rita Sushko
Head of Division, Ministry of Labour and Social Protection
NORDIC COUNCIL OF MINISTERS
Mr Inge OVESEN
Director
NSH-Nordic Co-operation on Disability
Box 510
S-16215 VÄLLINGBY
297
Ms Rebecka WALLIN KUCER
Senior Adviser
Nordic Council of Ministers
Store Standstraede 18
DK-1255 COPENHAGEN
INTERNATIONAL NON-GOVERNMENTAL ORGANISATIONS
EUROPEAN ASSOCIATON OF SERVICE PROVIDERS FOR PERSONS WITH
DISABILITIES (EASPD)
Mr Luk ZELDERLOO
Secretary General
EASPD
Oudergemlaan 63
B-1040 BRUSSELS
EUROPEAN DISABILITY FORUM (EDF)
Mr Esteban TRÖMEL STURMER
Advisor
European Disability Forum
c/o FEAACEM, c/General Dias Prolier, 39
E-28012 MADRID
EUROPEAN UNION OF THE DEAF (EUD)
Mr Adrien PELLETIER
Vice-Président
European Union of the Deaf
Coupure Rechts 314
B-9000 GENT
Mr Gerdinand WAGENAAR
Sign Language Interpreter
Nicolaas Tulpstraat 88
NL- 25 63 XN DEN HAAG
REHABILITATION INTERNATIONAL (RI)
Dr Ulrich GERKE
Referatsleiter
Rehabilitation international
Walter-Kolb-Strasse 9-11
D-60594 FRANKFURT
298
COUNCIL OF EUROPE BODIES
COUNCIL OF EUROPE PARLIAMENTARY ASSEMBLY
Mr Michael HANCOCK
ALDE
Council of Europe Parliamentary Assembly
House of Commons
GB- LONDON SW1A 0AA
Mrs Darinka STANTCHEVA
ALDE
National Assembly
1 Alexander Battenberg Sq.
BG-1169 SOFIA
Ms Ewa TOMAZEWSKA
Senator
Senate of the Republic of Poland
Wievska 4/8
PL-00-902 WARSZAWA
Mr Geza MEZEI
Head of Secretariat
Social, Health and Family Affairs Committee
Council of Europe Parliamentary Assembly
Council of Europe
F-67075 STRASBOURG
CONGRESS OF LOCAL AND REGIONAL AUTHORITIES OF THE COUNCIL OF
EUROPE
Mr Viatcheslav ROGOV
Head
Chambre des pouvoirs locaux de la Commission de la Cohésion
42 Sovetskaya Str
RUS-601120 POKROV
COMMISSIONER FOR HUMAN RIGHTS
Commissioner for Human Rights
Council of Europe
F-67075 STRASBOURG
Mr Alexander GUESSEL
Office of the Commissioner for Human Rights
Council of Europe
F-67075 STRASBOURG
299
Mr Mamed MADAEV
Council of Europe
F-67075 STRASBOURG
Ms Anna NILSSON
Council of Europe
F-67075 STRASBOURG
DEVELOPMENT BANK OF THE COUNCIL OF EUROPE
Mr Richard VENEAU
Directeur Ressources Humaines
CEB / Council of Europe
55 avenue Kléber
F-75116 PARIS
Ms Giusi PAJARDI
Head of the Secretariat of the CEB
Council of Europe
Avenue de l'Europe
F-67075 STRASBOURG
GENERAL SECRETARIAT
Ms Maud DE BOER-BUQUICCHIO
Deputy Secretary General
Council of Europe
F-67075 STRASBOURG
PRIVATE OFFICE OF THE SECRETARY GENERAL
Ms Irena GUIDIKOVA
Council of Europe
F-67075 STRASBOURG
DIRECTORATE GENERAL III-SOCIAL COHESION
Mr Alexander VLADYCHENKO
Director General - Social Cohesion
Council of Europe
F-67075 STRASBOURG
Partial Agreement Division in the Social and Public Health Field
Mr Thorsten AFFLERBACH
Head of Division
Council of Europe
F-67075 STRASBOURG
Tel. : +33 3 88 41 28 23
[email protected]
300
Ms Angela GARABAGIU
Administrative officer - Disability Action Plan
Council of Europe
F-67075 STRASBOURG
Tel. : +33 3 88 41 45 20
[email protected]
Mr Gunnar TVEITEN
Consultant
Council of Europe
Ms Deborah GRETENER
Assistant - Disability Action Plan
Council of Europe
F-67075 STRASBOURG
Tel. : +33 3 90 21 44 25 / Fax : +33 3 88 41 27 26
[email protected]
Ms Katie STEPHENS
Assistant - Disability Action Plan
Council of Europe
F-67075 STRASBOURG
Tel. : +33 3 88 41 39 84 / Fax : +33 3 88 41 27 26
[email protected]
RAPPORTEURS
Mr Nils-Petter KARLSSON
General Rapporteur
Assistant Professor
Telemark University College
PO Box 203
N-3901 PORSGRUNN
Professor Hilary BROWN
Workshop Rapporteur
Canterbury Christ Church University
Salomons Centre : Broomhill Rd
GB-TUNBRIDGE WELLS TN3 OTG
PRESS
Ms Axelle CORTY
Connaissance des Arts Magazine
France
Mr Kayhan KARACA
NTV Channel Turkey
Turkey
301
Mr Michel SCHULMAN
Radio France Internationale
France
Ms Margherita SFORZA
Euronews TV Channel
France
Ms Estelle STEINER
Press Division
Council of Europe
F-67075 STRASBOURG
Tel. : +33 3 88 41 33 35
[email protected]
Ms Oxana SUTYAGINA
Council of Europe
F-67075 STRASBOURG
Tel. : +33 3 90 21 53 63
[email protected]
Mr Alban BODINEAU
Photographer
Council of Europe
F-67075 STRASBOURG
Tel. : +33 3 90 21 52 76
[email protected]
Mr Pierre KEARLEN
Cameraman
Council of Europe
F-67075 STRASBOURG
INTERPRETERS
-
Ms Valentina ANUFRIEVA
Mr Evgueni AVRORIN
Mr Igor FEKLISSOV
Mr Alexander KHAYTSMAN
Mr Andrei KLEYMENOV
Mr Serguei MALININ
Mr Anatoly MIGACHEV
Mr Pavel PALAZHCHENKO
Mr Grigory SHKALIKOV
Mr Pavel TYUREV
Ms Anna USPENSKAYA
Mr Leonid VEKCHINE
302

Improving the quality of life of people with disabilities in Europe

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