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VOL-15
RIGHTS!
Choice!
?
IN THIS ISSUE:
Your Rights, Your Choice,
Advocacy & Independence
1 / BRIDGE MAGAZINE
Quality of life
A better future for those with a disability
05
BRIDGE VOLUME 14 - March 2014
bridging
THE GAP
ISSN 1448-9856
General Editor:
Contributing editors:
National Development
Manager:
Barry Morris
Alice Corcoran
Jessica Irons
Glen Farlow
Synapse
PO Box 3356
South Brisbane 4101
P: 61 7 3137 7400
F: 61 7 3137 7452
E: [email protected]
W: http://synapse.org.au
Difficulty with making decisions
Advice from Drs Bateman & Evans
11
Jennifer Cullen, CEO of Synapse
The Bridge is the quarterly magazine produced by
Synapse, an organisation dedicated to improving
the quality of life of people living with and
affected by Brain Disorders. Published nationally,
internationally, and online, it features practical
strategies, current news and research, and personal
stories. We welcome contributions and news,
especially from academics, community groups,
other organisations or those who have personal
experience to share.
Support needs of carers
Strategies for coping as a carer
15
Advertising rates available on request.
VISUAL DIFFICULTIES: Visit www.synapse.org.au
and view the free online version which can be
expanded on screen.
DISCLAIMER: While all care has been taken to
ensure information is accurate, all information
in this publication is only intended as a guide,
and proper medical or professional support and
information should be sought. Synapse will not be
held responsible for any injuries or damages that
arise from following the information provided.
Material within does not necessarily reflect the
policies of Synapse or the staff and Board of
Management. References to other organisations
and services do not imply an endorsement or
guarantee by Synapse.
1 / BRIDGE MAGAZINE
INDEX
03 Advocacy and the NDIS
Ongoing need for advocacy services
05 Quality of life
A better future for those with disability
07 Successful advocacy
A do-it-yourself guide
09 Living next door to Alice
When neighbours become enemies
11 Difficulty with making decisions
Advice from Drs Bateman & Evans
13 Adapting your home
Easier living after acquiring a disability
15 Support needs of carers
Strategies for coping as a carer
17 Coping with memory problems
Solutions for a common problem
19 Attention problems
Often confused with memory issues
20 Returning to work
Handy tips from Max Employment
21 Easy targets
Gerowyn Hanson on the invisible disability
22 How long with these problems last?
A guide on recovery from a brain injury
23 The forgotten survivor
Carers & family are sometimes forgotten
24 Young people in nursing homes
A serious issue needing solutions now
25 My adult child has a brain injury
Information for parents from ABIOS
27 Never say never
Hope for those with a severe brain injury
29 National Disability Insurance Scheme
Effectiveness, efficiency, and reconnection
30 Living alone with dementia
Tips on maximising independence
Choice and Control
Change is inevitably a challenge for
everyone, though depending on your
personality or coping strategies, it
challenges us for different reasons. For some it
breaks what are our normal habits or routine,
while for others, the challenge lies in the
personal test to maximise the opportunities it
creates. Ultimately, the issue for all of us is that
change leads us into the unknown.
But change also revolves around a choice; a
personal decision to take action on one thing,
or another. It’s this choice that becomes the
focal point, and gives us control over how we
live our lives. What if it isn’t a choice, but a
human right? And what’s the difference?.
Human rights are fundamental principles
and freedoms given to every person by virtue of
them being human i.e., they cannot be given to
someone, nor can they be taken away. They are
the rights we all expect as members of modern
society, such as dignity, equality and autonomy.
So, if we cannot take these rights away, why do
we hear about human rights issues on the news
every night?
People with a disability and their families are
often faced with a range of barriers including,
but not limited to, accessibility, finance,
employment, education, medical services, and
transport.
Brain Disorders can result in a range of
complex behaviours. Due to the invisible nature
of the disability, and the lack of understanding
in the community, clients are often subtly
excluded from community engagement, “for
the safety of the community”.
This is a clear example of human rights
abuse, and an approach that is rarely safer,
easier, or cheaper… just perceived as such.
Instead of using client-based planning and
working with local service providers to manage
behaviours and create relationships, the client is
excluded altogether.
This edition of Bridge will examine these
human rights, the discrimination that people
with a disability face each day, and the advocates
who work to uphold people’s right to choose.
Change is coming, whether we like it or not.
Many national advocacy services are currently
being defunded, and the pending
National Disability Insurance Scheme
(NDIS) will involve a systemic change to our
advocacy systems.
What will be our new reality, and how do we
ensure that everyone has “choice and control”
over their lives?
Jennifer Cullen
CEO of Synapse
AUSTRALIAN NETWORK OF BRAIN INJURY ASSOCIATIONS
QLD
QLD
QLD
AUS
NSW
VIC
TAS
WA
SA
NT
Synapse
ABIOS (Acquired Brain Injury Outreach Service)
Headway Gold Coast
Brain Injury Australia
Brain Injury Association of NSW
BrainLink Services
Brain Injury Association of Tasmania
Headwest
Brain Injury Network of South Australia
Somerville Community Services
T: 07 3137 7400 T: 07 3406 2311 T: 07 5574 4311 T: 1 800 BRAIN1 T: 02 9868 5261 T: 03 9845 2950 T: 03 6278 7299 T: 08 9330 6370 T: 08 8217 7600 T: 08 8920 4100 E: [email protected]
www.synapse.org.au
ww.health.qld.gov.au/abios
www.headwaygoldcoast.org
www.braininjuryaustralia.org.au
www.biansw.org.au
www.brainlink.org.au
www.biat.org.au
www.headwest.asn.au
www.binsa.org
www.somerville.org.au
2 / BRIDGE MAGAZINE
2
Raising awareness of the availability of
independent advocacy will help individuals and
organisations to become more accountable for
their actions, while providing a safety net for
the people participating in the scheme.
Human rights, policy & legislation
The Commonwealth has signed international
covenants that offer specific protections to
persons with disabilities, including the
Universal Declaration of Human Rights, the
Convention on the Rights of the Child, and
the Convention on the Rights of Persons with
Disabilities (CRPD).
In principle, every Australian has human
rights but they need to have the backing of the
law and also be enforced when needed. We do
not yet have mechanisms for the enforcement
of those rights at every level of government.
The Australian Commonwealth has also
created legal and policy benchmarks that
underpin the rights of people with disabilities.
The Commonwealth enacted a Disability
Discrimination Act 1992, created a Human
Rights Commission, and appointed a Disability
Rights Commissioner to raise awareness of
disability issues, empower people to challenge
inequities in treatment and promote the human
rights of people with disabilities. However,
despite Australia’s human rights framework
and despite the funding of disability-specific
advocacy, people’s human rights are still violated
and their supports are insufficient to guarantee
a good life.
Advocacy & the NDIS
The National Disability Insurance Scheme will
not wipe out the need for advocacy
There are many definitions of advocacy
and much debate exists regarding which
one is the most appropriate to use. Having
a definition of advocacy is necessary so that we
have something to refer to, to check against and
to encourage discussion about what we are
doing.
What is advocacy?
Advocacy is speaking, acting and writing, with
minimal conflict of interest, on behalf of the
sincerely perceived interests of a disadvantaged
person or group to promote, protect and defend
their welfare and justice by:
•being on their side and no-one else’s
•
being primarily concerned with their
fundamental needs
•remaining loyal and accountable to them
in a way which is emphatic and vigorous
and which is, or is likely to be, costly to the
advocate or advocacy group.
The NDIS
The Commonwealth has made substantial
3 / BRIDGE MAGAZINE
in-principle commitment to the rights of
people with disability through the National
Disability Insurance Scheme (NDIS). This
scheme will improve the lives of many people
with disability, as people with a disability
experience disadvantages in education, health,
workforce participation and access to justice.
The NDIS offers an insurance solution
for the provision of disability supports, but
the opportunities the NDIS presents will
generate more unmet need for advocacy. For
example, participation and engagement in the
workforce, education, recreation, tourism and
in community life will not always be welcomed,
or run smoothly. Many people with disability
will manage those transitional challenges
themselves, but many others will need advocacy
to secure the rights the Commonwealth has
endorsed.
Advocacy & the NDIS
It is important that the Australian
Government continues to provide funding
for general advocacy by non-government
organisations, with no involvement by the
NDIS or bodies it funds. This will reduce the
potential for conflicts of interest, and advocates
must be able to offer criticism without the
possibility of sanction by their funding body.
Independent advocacy, provided by notfor-profit organisations, must be made freely
available to participants in the NDIS. It
would be unfair to expect a person to pay for
independent advocacy out of their individual
budget, especially when their concerns relate
to the scheme itself and the services provided
through the scheme.
The allocation of funds should take into
account the costs of training and workplace
development, raising public awareness and the
provision of independent advocacy in a variety
of forms.
Non-legal independent advocates can
assist people in addressing issues without the
need for legal intervention; which is likely to
save considerable time, anxiety and expense.
Facts of disadvantage
People with disability are overrepresented
in the criminal justice system, and also face
barriers in finding employment, accessing
services, education and suitable housing, health
and social care services. People with disabilities
have been expected to fit into support services,
rather than services personalised to promote
independence and extend opportunity.
Disability service have also been fragmented,
often inappropriate, and lacking coordination
across the country.
The insurance solution
The support strategy recommended by the
Productivity Commission and adopted by the
NDIS Taskforce promotes three tiers of support
for 3.8 million people with disabilities.
The first tier includes campaigns and
information aimed at raising awareness of
disability and disability-related discrimination.
The second tier includes coordination of
mainstream information and referral services
e.g. a centralised electronic database of service
links to measures of performance and quality.
The third tier will be individually tailored
funded supports for people with long-term care
and support needs. This will account for the
bulk of the funding.
The NDIS is about much more than the
provision of supports, information and referrals
and challenging prejudice. It has the potential
to put important decision-making in the hands
of people with disabilities. For example, it
will allow people to sever ties with disability
service providers if they wish. While increased
autonomy is a desirable outcome, it will lead to
the need for more advocacy services.
Need for advocacy
As consumers become accustomed to the
new model of support it will become apparent
that for some people conflicts will arise in the
following areas:
•Assessment fails to anticipate and meet all
reasonable and necessary support needs
•Create needs itself - ‘transaction conflicts’
- associated with negotiating a complex
bureaucratic system.
No single program, even a generously funded
one, will meet all the needs of all people with
disabilities. The nature of disability changes
with context. Where people’s support needs
are being met it is clear that there will still be
additional social barriers to full participation
that an NDIS cannot, in the short term,
overcome.
Here are some powerful reasons why we will
need strong government support for advocacy:
•There is already considerable unmet demand
for advocacy
•Demand for advocacy will likely increase
during transition under an NDIS
•Advocacy must be independently funded and
cannot be subsumed into other services
•Support for advocacy is central to the current
national disability strategy
•
The
commonwealth
is
signatory
to
international human rights covenants that
promote and encourage advocacy for people
with disability.
The National Disability Insurance Scheme
should create unprecedented opportunities
and address some of the long-standing
cultural biases against disabilities too –
but it is also obvious the NDIS will not
be a universal solution, and advocacy will
remain a necessity.
This article is a summary of an article by Queensland
Advocacy Incorporated (QAI). Their mission is to promote,
protect and defend, through advocacy, the fundamental
needs and rights and lives of the most vulnerable people
with disability in Queensland. Visit www.qai.org.au.
Your life
Your choice
Your Life Your Choice provides the framework for
how self-directed support operates in Queensland.
It is a key principle behind the National Disability
Insurance Scheme. Self-directed support is a
funding approach which enables people with a
disability and their family to have authority and
choice and control over their disability supports
and services.
By having the opportunity to plan, purchase and
select supports and services that suit a person’s
individual needs, people with a disability and their
families can become active participants in the
design and delivery of their disability support.
How does it work?
A person with a disability can choose between
receiving services that are delivered by funded
non-government providers in the traditional
way, or self-directing their supports designed by
themselves to suit their specific disability needs.
Self-directed support will look different for
each person, and can change for the person as
circumstances change. Self-directed support can
start with a person taking as much responsibility
as they feel confident with for the planning,
budgeting and coordinating of their support, and
for the purchase of additional assistance in these
areas.
Initially, self-directed support arrangements will
be facilitated by a host provider who will work with
the person and their family to develop a model of
self direction that meets the specific needs and
priorities of the person. This includes assisting the
family to budget and coordinate their funding.
Who can self-direct their support?
Self-directed support will initially be for people
and/or families who have:
• ongoing (recurrent) funding
• individualised funding
• support needs that are considered stable.
What is a host provider?
A host provider is a non-government service
provider that has developed a model of support
that gives people greater choice and control and
aligns with the elements in the Your Life Your
Choice framework. Host providers have been
endorsed and will enter into an agreement with
the Department of Communities, Child Safety and
Disability Services. Details about host providers
are available through the website below. Like to
know more? Visit: www.communities.qld.gov.au/
disability/key-projects/your-life-your-choice
4 / BRIDGE MAGAZINE
Quality of life
Money doesn’t buy happiness,
but Clare Townsend says it can be
measured to ensure a better future
for people with disabilities
Human rights are rights to which all
individuals are entitled because they are
human beings. The Universal Declaration
of Human Rights1 sets out minimum conditions
for a dignified human life. However possession
of human rights is not guaranteed. People with
disabilities continue to experience social
exclusion and barriers to meaningful
participation in the community.2,3,4
A rights-based approach
The Convention on the Rights of Persons
with Disabilities6 constitutes a basic shift in
the treatment of people with disabilities from a
medical or charity perspective to a rights-based
approach.5 These rights cover many areas of
life, including:
•work and employment
•physical wellbeing
•social inclusion and participation
•adequate standards of living
•self-determination and independence
•living personal development.
5 / BRIDGE MAGAZINE
Despite some advances, the quality of
life of people with disabilities often differs
significantly from others regardless of a
country’s human rights perspective. People with
severe and complex problems and those whose
behaviour challenges our understanding are
often not integrated into the community. Some
experience overt physical and mental abuse and
neglect, while others experience a lack of social
inclusion and meaningful participation in the
community, limited social relationships and
restricted lives.
Quality of life is subjective and objective.
It includes things common to all people such
clean drinking water and things unique to the
individual (e.g. having pets).
The Convention on the Rights of Persons
with Disabilities generally and specifically
establishes the rights of people with disabilities
to express their feelings about:
•their condition
•how they would like to live
•the services they wish to receive.
What is quality of life?
Quality of life has been described as:
•“an individual’s perceptions of wellbeing that
stem from satisfaction or dissatisfaction with
dimensions of life that are important to the
individual”8
•“an individual’s perception of their position
in life in the context of the culture and value
systems in which they live and in relation
to their goals, expectations, standards and
concerns.9
How do we measure quality of life?
Instruments have been developed to measure
quality of life. They measure a person’s physical
health, psychological health, social relationships,
environment and the person’s own appraisal
of his or her wellbeing. Although objective
assessments are important, the person’s own
views are crucial. It is essential that they provide
information about their quality of life, rather
than someone speaking on their behalf.
Quality of life varies over time and it is
important to measure it regularly to enable
an understanding of how a person’s disability,
life experiences, and the effects of services and
supports influence their quality of life.
Human services have often focused on
behaviour reduction as a key outcome rather
than scientifically measuring the quality of life
of people who have neurocognitive disorders
and who display complex behaviours. Quality
of life is becoming a more central focus.
Services want to understand the positive aspects
of people’s lives, and how these aspects can be
constantly improved and enhanced through
strategies including enhanced support services,
access to employment, telecommunications,
assistive technology, community living and
informed decision making.
questions. As we continue trialing it may be
necessary to develop a selection of measures
which best fit individual communication styles.
This will ensure all clients are involved in
giving ongoing feedback regarding their level of
quality of life and wellbeing.
Synapse clients & their quality of life
Synapse has moved from focusing on
behaviour reduction for its own sake to
considering behaviour reduction as a means to
achieve personal quality of life goals. In 2012
we introduced the Periodic Service Review
(PSR) and routine use of the Overt Behaviour
Scale10 enabling objective, quantification and
measurement of behavioural change and dayto-day goals. Synapse is building on this work
by developing a routine outcome measurement
system to measure client outcomes against
individual personal goals.
In 2013 Synapse started to measure individual
quality of life outcomes. The system will enable
us to measure individual changes and changes
across systems and populations. We will use
validated quality of life measures that address:
•emotional wellbeing
•physical wellbeing
•social inclusion
•interpersonal relationships
•material wellbeing
•self-determination
•personal development
•human rights.
REFERENCES
How does it work?
Clients, family members and support
workers will complete questionnaires. Service
users and families will self-administer the selfreport questionnaire. For service users unable
to self-administer other service users will be
encouraged to assist.12 Data will be fed back
to clients, support workers and families when
they come to together for routine review of the
client’s individual plan. The ongoing system
will provide the evidence base for Synapse
decision-making in terms of service delivery,
management and policy. Trials to date have
used the San Martin Scale.13
However Synapse clients are unique
individuals who have various modes of
communication and capacity to respond to
ABOUT THE AUTHOR, CLARE TOWNSEND PhD
Since joining Synapse in May 2013 Clare has developed
a strategic research agenda that addresses the needs of
people with neurocognitive and other complex disabilities
with specific emphasis on the policy and service needs
of Indigenous Australians with complex neurocognitive
disabilities and on routine consumer outcomes. Clare was
Director of System Research at the Centre of Excellence for
Behaviour Support, University of Queensland. Her research
sought to inform policy and service reform and to address
the human rights of people with intellectual disability and
challenging behaviours.
1. United Nations General Assembly. (1948) Universal declaration
of human rights. www.un.org/en/documents/udhr/
2. Inclusion Europe. (2009) Position paper: Poverty and
intellectual disability. Retrieved from http://www.inclusioneurope.org/uploads/doc/PP%2520FINAL.pdf
3. National People with Disabilities and Carer Council. (2009)
SHUT OUT: The Experience of People with Disabilities and their
Families in Australia. Retrieved from http://www.fahcsia.gov.
au/sa/ disability/pubs/policy/community_consult/Pages/
default.aspx
4. Owen F., Griffiths D., Tarulli D., & Murphy J. (2009) Historical
and theoretical foundations of the rights of people with
intellectual disabilities: Setting the stage. In: Challenges to
the human rights of people with intellectual disabilities (eds.
F. Owen & D. Griffith), pp. 23-42. London, United Kingdom:
Jessica Kingsley Publishers.
5. Guernsey K., Nicoli M., & Ninio A. (2007) Convention of the
rights of persons with disabilities: Its implementation and
relevance for the World Bank. Washington, D.C.: The World
Bank.
6. Cummins R. (2005) Issues in the systematic assessment of
quality of life. In: Assessing adults with intellectual disabilities:
A service provider’s guide (eds. J. Hogg & A. Langa), pp. 10-19.
Malden, MA: Wiley-Blackwell.
7. Martínez-Leal R., Salvador-Carulla L., Linehan C., Walsh P.,
Weber G., Van Hove T. M., et al. (2011) The impact of living
arrangements and deinstitutionalization on the health status
of persons with intellectual disability in Europe. Journal of
Intellectual Disability Research 55, 858-872.
8. Ferrans, C., & Powers, M. (1985). Quality of Life Index:
Development and psychometric properties. Advances in
Nursing Science, 8, 15-24.
9. The World Health Organisation (1997). Measuring Quality of
Life. Division of Mental Health and Prevention of Substance
Abuse p.3. Retrieved from: www.who.int/mental_health/
media/68.pdf
10. Kelly, G. (2010). The Overt Behaviour Scale. The Center for
Outcome Measurement in Brain Injury. http://www.tbims.org/
combi/obs ( accessed April 24, 2014 ).
11. Schalock, R.L. Verdugo, M.A., Jenaro, C., Wang, W., Wehmeyer,
M., Xu, J., & Lachapelle, Y. (2005). Cross cultural study
of quality of life indicators. American Journal of Mental
Retardation, 110, 298-311.
12. Bonham, G.S., Basehart, S., Schalock,R.L., Marchand, C.B.,
Kirchner, N., & Rumenap, J.M. (2004). Consumer-based quality
of life assessment: The Maryland Ask Me Project! Mental
Retardation, 42(5), 338-355.
13. Verdugo, M.A., Gomez, L.E., Arias, B., Tasse, M.J. & Brown, I.
San Martin Scale. INICO© 2013
Human rights
for homeless
Indigenous
people
Indigenous people are significantly over-represented
in disability and homeless populations. The number
of homeless Indigenous people with neurocognitive
disabilities is unknown but thought to be significant.
Lack of evidence based policy and service responses
are thought to contribute to inadequate disability
service provision and over representation in the
criminal justice system.
Synapse is seeking funding to undertake research
that will address the lack of prevalence, demographic
and qualitative data that identifies the experiences
and needs of homeless Indigenous people who have
neurocognitive disabilities and the need for culturally
appropriate policy and service responses.
The 12 month project will be undertaken in Cairns
where 348 Indigenous people have been identified
as being homeless. This includes those experiencing
long-term homelessness. Stakeholders suspect high
rates of neurocognitive disabilities amongst this group
but lack capacity to assess the prevalence, nature
or impact of such. As a result homeless Indigenous
people with neurocognitive disabilities are frequently
not registered as eligible for disability support and
their needs are not incorporated in homeless policy,
service models and community responses.
Project partners will include the Specialist Disability
Assessment and Outreach Service, Department of
Communities (SDAOT) and James Cook University,
with the blessing of the Traditional Owners of the
land. Participants will be Indigenous people who use
crisis accommodation services. A point prevalence
study will ascertain the proportion of those with a
neurocognitive disability. Participants will be offered
a culturally safe and appropriate clinical assessment
including: neurocognitive, psychiatric and functional
assessment. They will be informed of their assessment
results and eligibility for disability supports.
Further interviews will explore participants’
experiences of neurocognitive disability and
homelessness; understanding and expectations of
disability supports, including the NDIS; preferred
modes of access to services; and barriers and enablers
to service usage. Consultations with Indigenous
stakeholders and service providers will explore
culturally appropriate diagnostic assessment,
collaborative service provision and mechanisms to
facilitate access to disability services.
6 / BRIDGE MAGAZINE
Always ask for the outcomes and minutes of
a meeting to be provided in written form. If
you have any need to challenge what has been
documented do so in writing and ask for the
response to also be provided in written format.
Complaints
ESCALATING TO MEDIA, YES OR NO?
In some cases, you may find yourself in the
position of feeling your concerns are not being
adequately addressed. When all other avenues
have been attempted and proven fruitless, some
people do consider using the media such as the
newspapers or television to raise awareness of
their situation. Undertaking this path must not
be done without significant consideration for
the many pros and cons which exist.
Successful advocacy
How to make a complaint or influence change
Do you need to make a complaint? Do
you want to advocate for change, either
for yourself, on behalf of another, or for
systemic change? These steps will help to ensure
a more positive outcome.
MAKE A COMPLAINT
OR INFLUENCE CHANGE
Keep emotional control
While passion and emotions may be high
due to negative circumstances, this won’t be
helpful when attempting to negotiate. While
difficult to contain these feelings, logical and
evidential information will always help to
influence change more effectively than anger,
tears or threats.
Pick your battles wisely
Decide which issues are most important
and must be addressed first. You cannot fix
everything at once. You shouldn’t forget about
other concerns, but it is wiser to prioritise what
can be solved, or must be fixed urgently, and
only move on once resolved.
Know your rights, entitlements &
responsibilities
You can far more effectively advocate for, or
challenge what is occurring, if you know what
you are entitled to. Thoroughly familiarise
yourself with policy, legislation, best practice,
7 / BRIDGE MAGAZINE
and individual service provider standards and
objectives. Presenting standpoints from an
informed perspective will gain you respect
in negotiations, and ensures that they will
be aware of your depth of knowledge and
full commitment to the process. It also helps
to reduce any feelings of vulnerability or
dependency on others to guide your actions.
Come with suggestions for resolution,
not just complaints
Providing potential solutions, and ways to
obtain them, shows that resolution is possible
and may also provide evidence of previously
unknown or considered outcomes. It is far more
productive to be a willing part of the solution
than to simply judge, point out fault, or criticise
the efforts of others. While any grievances may
be justified, anger or resentment are rarely
pathways to a resolution.
Create a win-win situation
Be prepared to compromise. Prioritise your
needs and rights, but show equal consideration
and awareness for the needs of others. This
demonstrates you do not hold a selfish disregard
or are dismissive of the impacts of these actions.
A small gain is far better than no gain at all.
Ensure positive ongoing relationships
Relationship building is vital; you never
know who you will meet or when you may
need a past connection again. Victory at
any cost may provide one “win” but people
forced into surrender or submission will not
be willing participants in the future. Working
with an individual or service will be extremely
uncomfortable in the future when there is
residual resentment or a mutual lack of respect.
Acknowledge & praise efforts of others
Take time to show appreciation for the efforts
of others to create a harmonious environment
for continued relationships in the future.
This shows that you do not just complain
about negative circumstances, but are able to
recognise when things are done well. Positive
praise makes people feel their efforts are not in
vain, and makes them more willing to continue
to put in greater effort.
Where & how to make a complaint
Always take your initial concerns to those
immediately responsible for the delivery of
the service. Most services and organisations
have defined grievance processes or channels
for reporting issues of concern. If you feel the
issue has not been adequately addressed or
resolved then escalate your case to those in more
senior positions of authority (e.g. coordinators,
heads of department, district managers, local
Members of Parliament, Director Generals,
Ministers, or an external regulatory body).
When making a complaint be sure to include
all of the necessary information. Try first by
answering the following questions:
•What is your concern?
•Who does it involve?
•When did the event or issue occur or begin?
•Where did it occur?
•What could or should have happened?
•What has been the outcome (both as a result
of an action, or a consequence of inaction)?
•What do you want to see happen?
•How can this be achieved?
Who can assist with the process?
Always remember to provide evidence and
supporting documentation, include others who
can support your claims. Keep copies of all
documentation and correspondence, including
records of phone and email communications.
Keep dates and names of people you speak to,
and the outcomes of these comusnversations.
Follow up if promised actions are not
undertaken in a timely manner.
Make sure to take someone else along
to meetings. Having support may help to
reduce any feelings of disempowerment if
feeling outnumbered (it is common for several
representatives from an organisation to attend).
This can also help with validating or providing
evidence at a later date if there are differing
opinions on what was discussed.
Pros
Creating greater awareness for a situation can
have the effect of identifying others who have
experienced a similar situation or outcome.
Additional numbers can help to add weight to
your expectations for change due to the number
of people similarly affected. Demonstrating
that your experience is not a unique occurrence
can show that your expectations are not
unreasonable.
Media attention can help to highlight the
urgency of a situation, create community
outrage, and put a spotlight on what needs to
change. It can also draw the attention of those
in positions of authority, and motivate them to
seek answers from those more directly involved
with the case.
Cons
Media attention can be very invasive and will
expose you and your family to the judgment
and scrutiny of others. Loss of privacy and
negative opinions of people who may not have
any empathy or understanding of the situation
can be difficult to deal with.
Exposure in the media can antagonise those
from whom you are seeking support or help,
especially if they receive negative publicity as
a result.
You may find that any future services
or organisations may be nervous or have
reluctance to be associated with you due to
your demonstrated willingness to go to the
media.
REFERENCES AND FURTHER INFORMATION
Explore these links for useful services and information:
•www.humanrights.gov.au/guide-australias-antidiscrimination-laws
•www.humanrights.gov.au/disability-rights-internationalconvention-human-rights-and-disability
•www.humanrights.gov.au/our-work/disability-rights/
disability-standards-and-guidelines
•www.humanrights.gov.au/disability-rights-disabilitylegal-services
•www.humanrights.gov.au/know-your-rights-disabilitydiscrimination
•www.fahcsia.gov.au/our-responsibilities/disability-andcarers/standards-and-quality-assurance
If you have a complaint about any government service
they will have a complaints procedure they can refer
you to. If you have exhausted the options provided,
here are contacts in each State for the relevant
Ombudsman or Commissioner.
Queensland: The Queensland Ombudsman
investigates complaints about state government
agencies, local councils and public universities. The
service also help agencies improve their decisionmaking and administrative practice. Visit the website
at www.ombudsman.qld.gov.au
New South Wales: The NSW Ombudsman has range
of responsibilities in relation to complaints about
community and disability services, including handling
complaints and reviewing the causes and patterns
of complaints. Visit www.ombo.nsw.gov.au for more
information.
Northern Territory: The Ombudsman’s office is the
next step if you have taken all possible steps to resolve
your concerns directly with the relevant government
department. Visit: www.ombudsman.nt.gov.au
Victoria: The Disability Services Commissioner can
respond to complaints about Victorian disability
services including disability services provided by the
Department of Human Services. Visit the website
at www.odsc.vic.gov.au. There is also the Victorian
Ombudsman at www.ombudsman.vic.gov.au
South Australia: The Ombudsman is independent,
and investigates complaints about South Australian
government and local government agencies. Visit:
www.ombudsman.sa.gov.au
Tasmania: The Ombudsman is an independent
officer appointed by the Governor to investigate the
administrative actions of public authorities to ensure
that their actions are lawful, reasonable and fair.
www.ombudsman.tas.gov.au
Western Australia: The Health and Disability
Services Complaints Office is an independent statutory
authority providing an impartial resolution service
for complaints relating to health or disability services
provided in WA. This service is free and available to all
users and providers of health or disability services. Visit
https://www.hadsco.wa.gov.au
8 / BRIDGE MAGAZINE
WHEN THINGS AREN’T GOING WELL . . .
•
•
•
•
Living next
door to Alice
Social inclusion, disability &
neighbours behaving badly
For those old enough to remember this
song it was a 1970s anthem about 25
years of unrequited love, but for me it is
simply a reminder of how neighbourly
relationships can and do profoundly affect us
(yes, my name really is Alice). Good, bad, or
indifferent, we all have a neighbour story to tell.
Generally most of us have good relationships
with the people we very closely share space
with, but lots of things can easily cause a
neighbourly relationship to sour – overhanging
trees, common fence lines, barking dogs,
loud teenagers, construction noise, or early
Sunday morning mowing. Any of these can
mean neighbours go from friendly waves and
cooperation to killing pets, uprooting trees,
hurling abuse, and calling the police.
In my case the catalyst was the birth of my
now 26-year-old son JH, who was at age three
diagnosed with autism. As a result we have
experienced the whole spectrum of the good,
the bad, and sadly the sometimes downright
ugly.
GOOD NEIGHBOUR TIPS
• Make time to get to know and form a relationship with your neighbours
• Recognise and respect each person’s right to live according to their own values, beliefs and needs
• Do not invade privacy or excessively invest in neighbourly relationships
• Where possible make home or property modifications to help ease known triggers of discontent
• Acknowledge and respect each person’s needs, and work towards compromise together.
9 / BRIDGE MAGAZINE
Two families & two different stories
It all began more than 30 years ago when we
moved into a nearly empty street with only a
few existing houses already there. We built our
home, had three sons (of which JH was the
eldest), and in a very short time people built
their homes beside us. The family on one side
went on to have three girls, and the other family
had two boys, and all these years later we still
live beside each other.
What living beside these same neighbours all
this time has taught me is that equal exposure
and experiences does not necessarily result in
the same understanding or outcomes. In fact
despite having the exact same interaction and
association with us, these two families, and
our relationship with them, could not be more
different.
Having autism meant that my son has
difficulties in understanding the social norms
and boundaries that most people take for
Speak with other family members or support people
Accept education and mediation if offered, and establish behavior protocols or responses
If police are likely to be involved make them aware of the situation and provide information about the person’s disability, support persons to contact, and establish processes of response.
Learn aboout your rights by starting with some of the points below:
- https://www.humanrights.gov.au/publications/what-universal-declaration-human-rights
- http://www.un.org/disabilities/convention/conventionfull.shtml
- Peace and good behaviour order https://caxton.org.au/pdfs/Peace%20and%20Good%20
Behaviour%20Order%20kit%202013.pdf
granted. From a very young age all JH wanted
was to have friends, be liked, and know he was
safe, even if some of his behaviours seemed
unusual to those who did not understand
autism.
For those with an interest in social and human
behaviour our home is the perfect example of
how our own responses can dramatically affect
and influence a course of events, and their
outcomes. In the case of our two neighbours the
saying, “Life is 10% what happens to you, and
90% how you react to it”, has never been more
profoundly demonstrated.
The outdoors and being around nature was
JH’s sanctuary – he would also sit at the fence
line of either property watching the people next
door, trying to get their attention and seeing if
he could get them to say hello or share some
time with him. Despite having huge anxiety
about doing this, and constantly being fearful
of how he would be received or rejected, his
need to feel connected kept him trying. I was
very proud of him and his efforts, knowing very
well the overwhelming fear he faced in doing so.
Sadly his efforts we not equally received or
reciprocated, and while one family responded
with warmth, understanding and acceptance,
the other was dismissive and rejected all his
efforts to be friendly. Later, this degenerated
even further to rude and abusive behaviour,
swearing at him, threats of calling the police,
or making hurtful comments known to cause
anxiety and distress him even further.
At times the children even took pleasure in
knowing their comments would elicit his stress
responses of hitting his own head or biting on
his arm, and they laughed at him for doing
this, but were never checked by their parents
or told to stop.
Eventually even the thought of going out
into his garden caused such a state of anxiety
that JH could no longer go out the back door
if he saw any members of this family out there.
JH would become frozen with fear, his heart
rate would race, stress would escalate, and the
very behaviours these neighbours complained
about began to increase in frequency. JH’s
sanctuary of being in his garden was taken from
him, his ability to trust people and his to desire
to connect, died, and his world grew smaller
and smaller.
We tried many times to offer information
to this family and raise their understanding of
my son’s disability, but they rejected everything
and refused to consider that their actions could
in fact be contributing to the now negative
and fearful relationship that was affecting all.
Even the offers of mediation or the services
of a behaviour expert were not accepted, and
now years on we are no closer to resolving this
situation or easing the tension.
The happy side of this story is that the
family living on our other side continues to
have a most positive and delightfully reciprocal
relationship that has been wonderful.
So why do I tell this story?
Legislation was passed just a few years ago
for the deinstitutionalisation of people with
disabilities. There was also finally recognition
for the rights of all to be included in their
communities. However this legislation cannot
protect them from those in society who still feel
that “those people” should not be amongst us.
Sadly there are still some who hold the “not
in my neighbourhood or next to me” mentality
and wherever you find this thinking and lack
of acceptance, life continues to be difficult for
those most vulnerable members of our society.
The institutions may be gone, but the isolation
and disconnect continues; only now it happens
in nice little houses, in lovely little streets.
Embracing diversity is what allows us all to
grow and expand as individuals, and it defines
us as humans, but it seems that compassion
and acceptance cannot always be expected, and
is not always a given. My hope is that with
education and raising awareness we will be
able to change this narrow-minded thinking so
that people with disability or behaviours that
challenge our understanding will be able to live
and fully participate in their communities with
the understanding and support they deserve.
After all, aren’t we are all moving towards
being aged, and the possibility of an accident
or illness can very quickly place any one of us
in the position of being the person needing this
help. This investment in kindness may very well
be an investment in your own future.
On the edge
People with a brain injury are often living on the edge
of life. Exclusion from aspects of community life occurs
not only because we may not be financially well off
but through psychological means, when we do not feel
valued by those around us. Today there is widespread
systematic exclusion of whole groups of people in
Australia, particularly those with a disability.
If you experienced a brain injury today, you could find,
depending on your circumstances and the extent of
the injury, that your life is disrupted and the quality
of your social interaction is reduced. You may have
problems with memory, comprehending and retaining
information, learning new things, organising,
sequencing and problem-solving, impaired perceptive
ability and lack of insight.
Many do not understand what a brain injury is, so
they may assume you are disinterested, irresponsible,
lazy, unmotivated, angry, non-compliant and difficult.
People often find that friendships tend to disappear
when there significant cognitive effects that affect
their social interaction.
A brain injury may mean you can longer stay
employed. You may find that you are eligible
for the Disability Support Pension but you have
difficulty trying to survive on this amount of money.
Alternatively you may have to go on the Newstart
Allowance which can be very difficult. You are given a
job diary and told you have to apply for numerous jobs
every fortnight. You forget to turn up to appointments
or respond to Centrelink letters. You lose some of your
payment because you have been breached. You have
to go to employment services but they don’t have staff
who understand what a brain injury is. You are told
things that you don’t remember, and nobody thinks to
write them down for you.
This is the precarious edge of life that many can face
after acquiring a brain injury. Contact the Brain Injury
Association in your State to ensure you receive all the
support you possibly can to ensure you aren’t living on
the edge after acquiring a brain injury.
10 / B R I D G E M A G A Z I N E
or professionals, and for the individual to want
to learn about possible solutions.
Difficulty with
making decisions
This is common after a brain injury, according to
Dr Andrew Bateman and Prof Jonathan Evans
Decision-making is one element of a
broader set of mental skills that have been
called ‘executive functions’ – these are the
skills needed to enable us to deal with problems
that arise in everyday life and to cope with new
situations. Everyday life is full of situations in
which we have to make decisions – some minor
(which toothpaste will I buy, what will I have
for dinner tonight?) and some major (will I stay
in this relationship, will I change my job?).
Decision-making involves many different
cognitive functions working together – longterm memory (how have I dealt with similar
situations in the past?), working memory
(holding information in mind and thinking
things through) and emotion (how important
is this decision to me, and how will the possible
outcomes make me feel?) are all involved.
Because decision-making involves a lot of
different processes, this means that if any one of
these processes is affected by brain injury, then
decision-making may be impaired.
People are affected in different ways – some
find it hard to make a decision at all, finding
that even what seem like simple decisions,
such as what toothpaste to buy, become
almost impossible. Some people become
impulsive, making hasty decisions, apparently
acting without thinking things through. Poor
judgement in relationships, with money, or in
business, can have devastating consequences for
the individual and their family. All of us, with
or without brain injury, have difficulty making
decisions from time to time, but brain injury
can make this much more frequent.
Decision-making & following through
For some people, a decision about a plan
of action might be made, but it is difficult to
follow through with the plan. It is as if a person’s
intention, or goal, becomes neglected. This can
sometimes be because the person becomes
distracted by other tasks or activities. The
person ‘forgets’ to do things, not because what
has to be done has been completely forgotten,
but rather that it is difficult to keep the thing
to be done in mind (e.g. take medication, go
to appointments, give someone a message,
carry out daily tasks, watch a favourite TV
program). This type of remembering is often
called ‘prospective remembering’. It requires
alertness to the plans for the day. Psychologists
use the concept of a ‘mental blackboard’ to
describe how we keep things we intend to do
in mind (written on a mental blackboard).
However, the difficulty can be that for a person
after brain injury things are easily rubbed off a
mental blackboard and temporarily ‘forgotten’.
Although the person may remember their
intention when reminded.
Self-awareness (insight)
The cognitive problems that cause
difficulties with decision-making or prospective
remembering may also make it difficult for an
individual to be aware of their problems. This
can be difficult for the person and his or her
family and friends, and cause conflict. The
person may show what may be considered by
others as bad judgement, and they may fail to
achieve important tasks. However, they may
not be aware of these difficulties, or share the
opinion of those judging this as a difficulty.
So one of the first challenges to overcome is
related to the need for the individual to achieve
a degree of self-awareness and understanding of
the problems they are experiencing. This may
require sensitive feedback from family, friends
Rehabilitation
It can be challenging working out how
to improve decision-making, problem-solving,
planning, following through, and remembering
to do things. The first step in rehabilitation is
understanding the problem, but with something
as complex as decision-making or problemsolving this may not be straightforward. It may
be best done with the help of a professional
such as an occupational therapist or clinical
psychologist.
For some people, learning to manage
impulsivity is important – developing a habit
of often stopping and thinking, even if just
briefly, about what you are doing and what you
have to do can help to interrupt a tendency to
act without thinking. The idea is that people
become better at using ‘self-talk’ – regulating
their own actions or behaviour.
In Goal Management Training, people learn
to be clear on what they want to achieve, work
out and keep in mind the steps needed, then
regularly check their mental blackboard to
ensure important tasks are kept in mind. A
study by researchers in Cambridge and Glasgow
showed that Goal Management Training,
combined with text message reminders, helped
people to remember tasks (making a phone call
to a voicemail service) that had to be done four
times a day.
Goal management involves these steps:
GOAL: What are you trying to achieve?
OBSTACLE: What is standing or could stand
in the way of you achieving the goal?
PLAN: What do you need to do, and do you
need help for any one of the steps?
PREDICTION: How well do you think you
will do? How many can you get done?
DO: Implement the plan.
REVIEW: What worked? What didn’t work?
Why or why not?
External aids
External aids such as diaries, notebooks, wall
charts and calendars are invaluable for people
with memory impairment. Also, electronic
watches, mobile phones, pagers and tablet
computers can all be set to provide reminders
and cues to do specific tasks, or to check a daily
planner. It isn’t always easy for someone with
memory difficulties to use these aids so the help
of a relative, carer or occupational therapist may
be needed.
Thanks to the original authors, Dr Andrew Bateman (Clinical
Manager, Oliver Zangwill Centre for Neuropsychological
Rehabilitation, Ely UK) and Prof Jonathan Evans (Professor
of Applied Neuropsychology, University of Glasgow, UK) for
permission to reproduce this article.
Had enough?
We certainly
have!
Alcohol-fuelled violence typically involves males, but
a disturbing account recently in Brisbane had a young
male knocking out a woman with a single punch from
behind. The intoxicated male was rebuffed by the
group of women after inappropriate behaviour. He
apologised and left, but 30 seconds later returned and
punched one of the women from behind.
This caused bleeding on her brain and ongoing
seizures and while she has returned home, has
ongoing cognitive issues and a fear of going outside.
The male was sentenced to 12 months imprisonment
with a non-parole period of two months and ordered
to pay more than $8000 as restitution.
It’s time to turn our outrage on those who hide behind
alcohol, drugs and anonymity. It’s time to turn the
tables on the ‘dicks’ who think bashing some poor
stranger will make them feel better about themselves.
The only thing this senseless violence has ever
achieved is to ruin people’s lives. . . far too many lives,
and far too many times. We know because we deal
with the human tragedy that follows.
Violent assault is rated among the top three most
common causes of Traumatic Brain Injury, which is
a major cause of disability and death worldwide.
In 2004-05 it was responsible for around 22,700
hospitalisations, about 980 deaths in hospital, and
estimated direct hospital care costs of $184 million
(AIHW, 2008).
Enough is enough. Add your voice across social media
to help get the message out. . . that violence destroys
lives.
Here’s the hashtag #DontBeADick. Now use it!
Special mattresses to increase comfort in
bed are available: air beds, water beds, net
beds, deep mattresses. Mattress elevators raise
a person from lying to sitting. Consider satin
sheets. They make it easier to move in bed.
Dressing
Use clothes that are easy to put on and
quick to fasten – front-opening dresses, skirts
or trousers with elastic waist bands, track suit
trousers, clip-on ties, cardigans rather than
jumpers, slip-on shoes, elastic shoelaces, stretch
fabrics without zips or buttons.
Aids for dressing include devices for putting
on socks, long shoehorns, gadgets for doing up
shoes and foot stools.
Adapting your home
In the kitchen
Benches and tables should be the right
height for the person to work at or have meals
at while sitting – with room for a wheelchair if
necessary.
Useful gadgets include steel-pronged, wooden
boards that secure vegetables for cutting, pot
stabilisers that secure saucepans to stove tops
during stirring, and a tap “turner” for someone
who cannot easily grasp a tap.
Special bowls, cups, knives, forks and spoons
are available for people with restricted hand
function. Plastic is more practical and safer
than china and glass if the person has difficulty
holding objects.
A plate guard that attaches to the side of the
plate stops food escaping and gives the person
something to push against.
Making your home a safer and easier to manage
environment for a family member with disability
Planning and making home alterations
can take time so it’s wise to start as soon
as possible. Remember that any significant
alterations, such as rails or ramps, need to
comply with building standards.
Around the house
Occupational therapists can assess your
situation and suggest the most appropriate
equipment and aids, such as the need for
wheelchair ramps or handrails near the stairs,
outside steps and in the bathroom.
Arrange the furniture so that it is easy to
move about. Some people need a clear passage.
Others may need supports along the way.
Install smoke detectors in all rooms. Keep the
temperature inside the house comfortable for
someone who cannot move about or regulate
body temperature.
Remove extension leads or loose cords and
don’t use loose rugs or mats on floors. Keep
outside paths free of loose things you could
trip on.
Room-to-room communication and alarms
can be arranged with plug-in baby alarms or
more sophisticated alarms. A buzzer or doorbell
could be wired to a light-touch switch. Ask your
occupational therapist.
A hands-free phone makes it possible to talk
without lifting the handset. Choose one with a
memory function for frequently used numbers.
Phones are also available with large numbers for
people with poor vision.
Get a “pick-up stick” – a metal stick with a
lifting claw at one end that is closed by a trigger
at the other end –for picking up things out of
reach.
In the bathroom
A plastic chair or stool in the shower allows
your family member to sit down. A longhandled sponge, soap on a rope and a suction
cup to keep soap in place may be useful. If
possible, it is best to have no step into the
shower.
Use a non-slip bath mat. Stick anti-slip
adhesive shapes on the bottom of the bath.
Try a raised toilet seat or a mobile commode
that can be wheeled over the toilet. Install hand
rails beside the toilet and shower.
An electric toothbrush is ideal for people who
have difficulty cleaning their teeth.
Consider installing individual hot and cold
taps or a hot water system that is thermostatically
controlled to prevent hot water burns.
In the bedroom
A person should be able to sit on their bed
with their feet flat to the floor. If the bed is too
high, consider having its legs shortened. If too
low, sit the bed on special raisers.
Bed sticks or “monkey poles” are available
that provide something to hold on to so a
person can swing themselves upright in bed.
A commode or urinal may overcome
the problem of toileting at night. A plastic
sheet on the bed is useful when someone has
incontinence.
Financial assistance
Talk to the Brain Injury Association in your
State about possible options here. If you are
already in touch with an occupational therapist
or social worker, ask them if your family is
eligible.
The Independent Living Centres in each
State can help to organise your application for
funding. In each State, Home and Community
Care can arrange maintenance and home
modifications, such as the fitting of handrails.
Contact your local council.
This article is reproduced from “Those who care” published
by Brainlink, a Victorian-based service that is dedicated to
improving the quality of life of people affected by acquired
disorders of the brain, by providing support to their families
and carers. Visit www.brainlink.org.au to find out more
about Brainlink.
Contact the Independent Living Centres Advisory Service by
ringing 1300 885 886 or visit http://ilcaustralia.org.au
Visualising
The Brain In
Real-Time
What if you could watch your brain and see exactly
what you were thinking? Well, of course you can’t
do that. But a group of scientists in the Neuroscape
lab of the University of California San Francisco, run
by Adam Gazzaley, have developed a sophisticated
new imaging technology, called Glass Brain, which
creates colorful visualizations of brain activity in
real-time.
To do this, the brain is first scanned using magnetic
resonance imaging (MRI), a technique utilizing
strong magnetic fields and radio waves to image
the body. This then generates a high-resolution 3D
model of the participant’s brain. Brain activity is
then recorded by an electroencephalogram (EEG)
which measures changes in voltage that occur
when currents flow through neurons. Normally,
EEG recordings look like a series of squiggly lines,
something you might expect to come out of a
lie detector. However glass brain converts this
information into bursts of colorful activity, weaving
through the 3D brain in real-time as different
parts of the brain display activity. This can then
be visualized by the participant on a game pad,
allowing them to whiz around different areas of
their own brain.
This isn’t just extremely cool - it’s hoped that it may
potentially have therapeutic applications. Many
brain imaging technologies are limited because
they require that the individual is placed inside
large machines and must remain still, whereas this
technology allows individuals to be in a somewhat
more true-to-life scenario, which could give more
information. Gazzaley hopes that this technology
could be applied to aid the treatment of numerous
conditions, such as Alzheimer’s, schizophrenia and
depression.
Read more at http://www.iflscience.com/brain/
scientists-develop-way-visualise-brain-real-time
In contrast, the issues arising from a less
severe brain injury are likely to be:
•Skills to cope with behavioural problems
• Skills to cope with the emotional changes
•Respite access
•Counselling support
•Education
•Social support
•In home support
•Employment opportunities
•Future planning.
SUGGESTED SOLUTIONS
Maintain your identity
Emphasise the importance of keeping your
own identity throughout the caring role. Make
a conscious effort of taking control of your
situation – don’t let your circumstances control
you.
Taking time just for yourself
Find ways that can help you cope through
stressful periods. Taking time out just for
yourself is incredibly important to maintain
your quality of life. This could include things
like exercise, using social media and taking
a hot bath. The point is to stop, breath and
focus on you. You need to make sure you are
looking after yourself in order to care for your
loved one.
Support needs
of carers
Find the positive aspects
Although the stresses and demands of the
caring role have a negative impact, there are still
many positive aspects. Realising that you are
helping to make someone else’s life better can
lead to closer relationships within the family –
this is a common positive experience for carers.
The role can generate new appreciation of life,
providing valuable life lessons that can lead to
rewarding experiences.
Bryony Kitter looks at strategies
for the many issues facing carers
One of the issues with a brain injury is its
incredible complexity which affects each
individual differently. This causes
significant problems when trying to predict
prognosis, recovery outcome, and establishing
the injured individual’s needs during the
recovery process. The care needs of people
affected by a brain injury often fall informally
onto their parents, spouse or siblings. In
Australia, 97% of people under 65 years with a
brain injury live in households, whereas only
3% live in cared accommodation. Research by
Pakenham et al. (2005) found these caregivers
reported caring an average of 114 hours per
week, and that half earn under $20, 000 per
annum. The sudden and abrupt nature of brain
injury places huge demands on family members,
and comes at a personal cost to the primary
carer.
COMMON ISSUES FACED BY CARERS
The psychological and physical impact
Caring for their loved one with severe
disabilities is often a huge psychological burden.
Many carers can experience depression, distress,
frustration, anxiety, social isolation, family
strain, sleep deprivation, burn out and adrenal
fatigue. Carers can also feel a tremendous sense
of loss – the loss of a partner or child as well as
the loss of their own identity.
One of the major challenges is the sudden
and abrupt nature of the injury, allowing no
time for emotional, psychological or financial
preparation. Uncertainty and the lack of
direction for their loved one’s present and future
circumstances is a source of significant stress.
and/or embarrassing for the carers.
Carers often need to constantly adapt to new
situations due to the unpredictable nature of
the effects of a brain injury. Friends and family
seem to struggle the most with the changes.
Social isolation
A common issue faced by carers is the feeling
of isolation that can occur after brain injury.
Friends and family often drop away when they
don’t understand the impact of a brain injury,
and distance themselves to avoid embarrassment
or being offended. Emotional and behavioural
changes can occur after a brain injury which
often lead to social situations which are strained
Getting to know the new person
The behavioural disturbances that can result
after a brain injury have a tremendous affect
on day-to-day life for carers. These can include
emotional and personality changes, violent
outbursts, substance abuse and inappropriate
sexual behaviour. Theses changes place
significant pressure on relationships within the
family.
Change in roles
Another issue that carers face is the changing
of the roles within their family. The lack of
employment opportunities for people with
disabilities, costs involved with caring, lack
of time, and the everyday costs of running a
household places a significant financial strain
on themselves and their families.
Lack of services & support
A major issue is the frequent lack of
appropriate services and support available for
carers and their family member when they
return back to work, study and/or the wider
community. A common issue for carers is the
lack of knowledge of where, who and what they
need to be looking for in terms of support.
COMMON NEEDS OF CARERS
Depending on the loved one’s injury severity,
your needs will vary. A severe brain injury
means the family is likely to be concerned with
the following issues:
•Medical care
•Respite access
•Assistance with incontinence
•Equipment access
•Education
•Social support
•In home support
•Counselling support
•Future planning.
Know where to find support
Knowing where to look for support can be
incredibly daunting and frustrating. Depending
on your area of location, services and support
will vary and it is often up to the carer to go
out and source these services for themselves.
Start by:
•Searching for your local disability services in
the area
•Searching for local respite agencies
•Contact a counsellor
•Join online forums to connect and share
experiences
•Contact your the Brain Injury Association in
your State.
This article is based on research conducted by Bryony Kitter
at the University of the Sunshine Coast.
USEFUL SUPPORT SERVICES IN QUEENSLAND
Synapse - http://synapse.org.au
Carers QLD - http://carersqld.asn.au
Blue Care - http://www.bluecare.org.au
ABIOS STEPS - http://www.health.qld.gov.au/abios/steps
YoungCare - https://www.youngcare.com.au
Lifeline - https://www.lifeline.org.au
Encouraging
independence
A human being’s right to independence is
enshrined in many types of legislation, but
promoting it for people with a brain injury
can be a tough job. The emphasis is still on
medically stabilising a person, provide some basic
rehabilitation then that’s the end of the story.
Ideally we should maximise the ability of
everyone to make informed choices according to
their own beliefs and preferences. At Synapse, our
model of practice is based on:
• Positive Behaviour Support
• Client- centred planning
• Least restrictive alternatives.
In a nutshell, this means using positive ways to
influence behaviour, not punishment. Everything
is framed by the client’s needs, not those of
the organisation. The existing strengths of a
person should be identified and included in
any strategies. Any interventions should cause
the least disruption or change in the person’s
circumstances as possible, and be done in a way
that maximises their independence and freedom.
What about when full independence isn’t
possible? The principle of the least restrictive
alternative should be applied. An example of this
would be someone who has become impulsive
after a brain injury and cannot manage their
money. Before appointing a Guardian to manage
their financial affairs, every effort should be
made to see if the person can relearn money
managements skills, or if family members may be
able to provide support.
Carers and family members play a crucial role
in maximising independence for someone after
a brain injury. It is vital that they are involved
with setting goals, and how to achieve them.
Important questions to ask are where will the
person live, how they will be occupied, how they
will relate to others, and what is their perception
of quality of life.
Promoting independence can lead to increased
likelihood of safety, opportunities to exercise
choice and an enhanced sense of self-esteem.
Unfortunately the existing technology to promote
self-sufficiency skills in people with brain injury
has been borrowed from other areas. We assume
it is effective, but more research is needed on
life skill development, use of rehabilitation
technology and life outcomes as a result of
specialised treatments.
ABCs of ABI
Coping with memory problems
Short-term memory is very common after a brain injury
– thankfully there are plenty of coping strategies available
Over 1.6 million Australians are affected with
some form of Acquired Brain Injury (ABI), which
is damage or neurological disruption in the brain
occurring after birth. There is little understanding
in the community about ABI and the impact it
has on people and their families. Often there is no
visible evidence of a brain injury having occurred,
so it is often called the invisible disability as
the effects of ABI are seen as personal faults or
character flaws. Even family members and friends
may regard their loved one as lazy or hard to get
along with.
Causes of ABI
The brain can be injured as a result of an accident,
a stroke, alcohol or drug abuse, tumours,
poisoning, infection and disease, near drowning,
haemorrhage, AIDS, and a number of other
disorders such as Alzheimer’s disease, Parkinson’s
disease and Multiple Sclerosis.
Effects of ABI
The human brain is the most complex object we
have ever discovered, so it is no surprise that any
injury or disruption can have a wide variety of
effects, including:
• medical difficulties
• changes in physical and sensory abilities
• changes in the ability to think, remember and
learn
• changes in behaviour and personality
• communication difficulties.
Long-term effects are difficult to predict, and
will be different for each person. However,
appropriate rehabilitation and support are always
important in determining the level of recovery
achieved. There is an increasing awareness of
ABI in society, which hopefully will lead to more
support services as well as a better understanding
of the difficulties faced by people who have
acquired a brain injury.
Memory impairment is one of the most
common effects of a brain disorder. Sadly
there are no cures available, but there are
a number of ways of coping and making life
easier. It is important to remember that using
the strategies described here is not ‘cheating’
and will in no way prevent natural recovery or
cause existing skills to be lost.
You can minimise the impact of memory
problems through:
•adapting the environment
•using external memory aids
•following a set routine
•
combining several strategies to make a
substitute ‘memory system’
•improving general well-being.
Adapt the environment
One of the simplest ways to help people with
memory problems is to adapt their environment
so they rely on memory less. Some ideas for
doing so which have helped others are:
•Keep a notepad by the phone to make a note
of phone calls and messages
•Put essential information on a noticeboard
•Decide on a special place to keep important
objects like keys, wallets or spectacles and
always putting them back in the same place
•Attach important items to your person so
they can’t be mislaid e.g. using a neck cord for
reading glasses
• Label cupboards and storage vessels as a
reminder of where things are kept
• Label perishable food with the date
it was opened
• Paint the toilet door a distinctive
colour so it is easier to find
• Label doors as a reminder of which room
is which.
Use external memory aids
Many people use external memory aids,
regardless of whether they have a brain
injury or not. External memory aids are
particularly important for people with
memory problems as they limit the work
the memory has to do. Check with your
local Brain Injury Association for places
where you can buy memory aids. Some
examples include:
•Smartphones and diary or calendar apps
•Diaries, filofaxes or datebooks
•Notebooks
•Lists, wall charts and calendars
•Alarm clocks and watches
•Tape recorders and dictaphones
•Electronic organisers
•Pagers
•Pill reminder boxes for medication
•Sticky-backed notes
•Photo albums
•Cameras.
Follow a set routine
Having a daily and weekly routine means
that people with memory problems can get
used to what to expect, which helps to reduce
the demands on memory. Changes in routine
are often necessary, but can be confusing. It is
a good idea for relatives and carers to explain
any changes in routine carefully and prepare the
person with memory problems well in advance,
giving plenty of spoken and written reminders.
You could also try the following reminder
strategies in order to establish routines:
•Make a note of regular activities in a diary or
on a calendar
•Make a chart of regular events, perhaps using
pictures or photographs, on a notice board.
Combine several strategies to make a
substitute memory system
Most people with memory problems find it
useful to combine several aids and strategies.
A combination of two or three strategies can
cover the areas where there would otherwise
be problems and provide a safety net for things
that must be remembered. Here are examples
of the components of two such combination
systems:
System one:
•Three lists – one showing routine tasks,
one showing where to find files in the filing
cabinet and showing key rules, such as when
to do the filing each day
•A ring binder with sections on urgent tasks
and long-term projects
•A notebook
•A telephone message pad to make notes of
conversations
•A computer calendar and alarm
•Practising assertiveness techniques to ‘buy
time’ instead of having to respond to requests
immediately
•Simple relaxation and breathing techniques to
reduce anxiety
System two:
•Filofax
•Journal
•Watch
•Dictaphone
•Various lists
•Sticky-backed notes
•Menu chart
•Keeping things in the same place
•Following routines.
Improving general well-being
Memory is very important in giving us a
sense of our own identity. Memory problems
often have major emotional effects, including
feelings of loss, anger and increased levels of
depression and anxiety. Some approaches to
dealing with this are as follows:
•Follow the strategies outlined earlier – they
can provide a measure of control which can
relieve anxiety and depression
•Sharing your feelings with others can provide
relief and reassurance – see if there are support
groups in your area
•Identify activities you find enjoyable and
relaxing, such as listening to music or
exercising, and take the time to indulge in
them.
This article is an excerpt from a fact sheet, reproduced from
www.headway.org.uk with the permission of Headway
- the brain injury association. You can send an email to
[email protected] to discuss any issues raised. Visit
the website for great resources available for free download.
Now you see it,
now you don’t
Attention problems
Returning to work
Acquired brain injury is often called the invisible
disability, because a victim may outwardly appear
to be unaffected but suffer many cognitive deficits.
Even family members who have been there right
throughout the hospital and rehabilitation phase can
start to see their loved one as being deliberately lazy,
unmotivated and difficult to get along with. But there
are many other aspects to this invisibility.
LACK OF SERVICES
Given the incidence and wide-ranging effects of
acquired brain injury, governments provide very little
in the way of funding, compared to other disabilities.
For example, the number of people whose disability
arises from a brain injury is roughly comparable
to those affected by intellectual disability or a
psychiatric disability. Yet the support services offered
by Government, if they exist at all, are woefully
inadequate.
STIGMA
Many people know little about Acquired Brain Injury,
and tend to equate it with an intellectual disability.
They may not realise that someone with a mild brain
injury usually as the same intelligence as before,
but they may be wrestling with short-term memory
issues.
DIAGNOSIS
Diagnosis, treatment and support may not be given
when it is needed most. In the past, many people
who had acquired a brain injury were told by hospital
specialists that there was nothing wrong them,
as diagnostic tests frequently did not show the
microscopic damage to brain cells.
MAKING THE INVISIBLE DISABILITY MORE VISIBLE
The Brain Injury Associations across Australia are
committed to systemic advocacy. Hopefully this will
increase both public and government awareness of
Acquired Brain Injury and eventually there will be
the support needed for proper rehabilitation and
reintegration into the community.
Sometimes what seems to be a memory
problem can really be a problem with attention
Your family member may not be able to
make new memories because they have a
hard time paying attention to things.
Here are some common attention problems:
•Trouble keeping their mind on one thing and
ignoring things around them
•Easily distracted by noises that wouldn’t have
bothered them before (e.g., trouble listening
to a conversation in a crowded restaurant)
•Trouble concentrating on reading
•Difficulty doing more than one thing at a
time, such as watching TV and cooking a
meal, or answering the phone and watching
the children)
•Difficulty “switching gears” or changing focus
from one thing to another (e.g. may continue
to do things the wrong way even after you
explain why it should be done a different way)
•Often disagrees with you about what you or
someone else said.
What you can do to improve attention
Make sure your home is free of clutter. Keep
things organised. Try to keep things in the same
place without changing things around much.
Make sure that everything is put away except
the things they are working with. For example, if
your family member is going to cook a meal, have
in sight only the things they need for that meal.
When telling your family member something
you want them to pay attention to, turn off the
TV, radio, etc. Make sure there are not a lot of
other people around to distract them. Don’t
leave the TV or radio on all the time, but only
when someone wants to hear it.
Make sure your family member works on
only one thing at a time.
Encourage them to take notes when reading
something that they need to remember. If
they liked to read for pleasure before but
have difficulty doing so now, consider buying
some books on tape. That way they can listen
and replay parts that they forget or don’t
understand.
If your family member gets stuck on one
idea or task, gently direct their attention to a
new task or idea. For example, say “We are no
longer talking about that; we are now talking
about. . . ”
This excerpt from “Picking up the pieces after TBI: a guide
for family members” is reproduced with permission of
Angelle M. Sander, Ph.D., with Baylor College of Medicine
and TIRR Memorial Hermann. This free publication is
available for download from www.tbicommunity.org or
www.brainline.org. The work was funded by Grant No.
H133B03117 from the National Institute on Disability and
Rehabilitation.
FURTHER READING
Visit http://synapse.org.au/get-the-facts.aspx and read our
fact sheet “Attention and Concentration”.
The alarm clock goes off. It’s six o’clock
on a Monday morning – the start of the
working week and the first of five days
until the weekend. Unfortunately, the
privilege of grumbling about work or fighting
with the doona on a cold winter’s morning is
not given to everyone.
In 2009 this privilege was given to 54.3%
of people with disability compared to 83% of
people without disability. Five years on, we can
hope that diversity-championing campaigns
and disability-positive employers have seen this
disproportion reduce, but there is definitely
more that can be done to ensure people with
disability are employed.
The benefits of employment are undeniable –
increased financial freedom and independence,
and the opportunity to establish a routine,
boost confidence, form strong social networks
and improve overall health and wellbeing.
These benefits are most apparent to people
who have been forced to stop working due to
changed circumstances, such as acquiring a
disability.
What can job seekers do to return to work
after acquiring disability?
Since 2006, the Government’s Disability
Employment Services (DES) program (originally
the Disability Employment Network) has
provided a supportive structure for job seekers
with disability to commence in or re-enter the
workforce. The Government contracts providers
to deliver wrap-around services, which includes
pre-employment assistance, job-seeking support
and a post-placement support service.
Job seekers with disability who are interested
in finding employment can access the services
of a DES provider by:
•receiving a referral from the Department of
Human Services (Centrelink), or
•directly registering with a provider, who
will then put them in contact with the
Department of Human Services (Centrelink)
to check eligibility for services.
Once job seekers are a registered client of a
DES provider, they will have an appointment
with an employment consultant who will work
out what assistance the provider can offer,
and what is required from the job seeker
to ensure long-term employment success. An
individualised Employment Pathway Plan
will be created and can include physical or
personal health services, training courses and
job searching assistance, such as:
•Resume writing
•Interview techniques
•Identifying transferable skills
•Reverse marketing to potential employers.
Once a job seeker has been placed into
employment, the provider will support the new
candidate and the employer, ensuring that the
transition to employment goes smoothly and
provides individualised on-the-job support and
offsite mentoring as required.
HOW TO REJOIN THE WORKFORCE AFTER ACQUIRING A DISABILITY
PRACTICE MAKES PERFECT – To increase your confidence and to make sure you’re comfortable with
tasks that could be given to you at work, practise skills that you have previously used in employment.
This could include being physically active for as long as you would need to be at work, completing
activities that make you concentrate (such as computer games, watching films, reading books or doing
crosswords), and taking notes when using the telephone.
FIND WHAT WORKS FOR YOU AT WORK – Implement processes, tools and shortcuts at work that tailor
the task to your ability. For example, your memory span might be short, so make use of external
memory aids such as note taking and recording devices to help you retain information.
SET UP SUPPORT SYSTEMS – To make your transition to work as smooth as possible, it’s important
to establish a tight knit support network that will be able to help you. This could include a DES
employment consultant, a return to work coordinator, a fellow colleague or family member. Be sure
to keep communication channels open between yourself, your support network and your employer to
ensure that any concerns or unforseen workplace issues can be resolved quickly.
What can employers do to support
someone returning to work?
There is a misconception that hiring a staff
member with a disability can result in a lack
of productivity, high absenteeism and health
and safety issues, but this is not the case. It has
been found that people with disability have
comparable levels of productivity and skills to
their colleagues without disability.
Generally speaking, employees with a
disability have the following qualities:
•lower levels of absenteeism
•use less sick leave
•have low turnover
•demonstrate high levels of loyalty
•have similar productivity to other employees.
Organisations who hire an employee with
a disability are often well regarded by their
staff as being a good employer, and have
increased levels of customer and staff loyalty.
They typically have an increased awareness
of workplace practices and conditions for all
employees.
Employers who work with a DES provider to
employ a job seeker with disability are able to
access federal government funding and expert
advice on workplace modifications, specialist
equipment and technology, wage subsidy
assistance, disability awareness training and
work-based personal assistance.
With support from family and friends,
employers and employment service providers, it
is possible for a person with acquired disability
to return to meaningful long-term employment
and to spring out of bed on a cold winter’s
morning, excited for what their work day holds
for them.
Contact MAX Employment Customer
Service Centre on 1800 807 505.
MAX Employment has been assisting people return to
work for more than a decade, and has over 100 sites across
Australia. Visit their site at www.maxemployment.com.au
How long will these
problems last?
Easy targets
An approximate guide to the
recovery process by Angelle Sander
Anyone with an invisible disability is still an easy
target by the misinformed and judgmental
Recently, a friend of mine with an
Acquired Brain Injury told me about the
aspersions many people were casting upon
her character due to her being on a Disability
Support Pension (DSP).
A number of different individuals who had
come into contact with her had suggested,
either directly or obliquely, that since her
condition was not apparent (hence the
description invisible disability), she should be
looking for paid employment. I was incensed!
This young woman has a number of
neurological
and
neuro-psychological
impairments as a result of complications from
a stroke some years ago.
The myth of bludging on the pension
A pension is not based on flimsy,
unsubstantiated medical grounds. Even a
person with a documented long-term illness
cannot necessarily receive a disability pension.
The impairment needs to meet a large number
of criteria which impact on the capacity to find
work and hold a job. The disability is usually
permanent with little or no chance of recovery,
therefore preventing the person from being
employed.
Invisible disabilities
I have written before on how brain disorders
can lead people to think we make bad employees,
when the issue is we are struggling with range
of cognitive problems such as fatigue, lack of
concentration and memory problems.
A bit of politics & philosophy
Modern economics, and to a large extent our
politics, is based on harnessing the usefulness
of others. The danger of this approach is a
potential lack of humanity if the individual
becomes nothing more than a cog in the
machinery. Taken to an extreme, this approach
means that people with a disability have no
worth in society if they are unable to work for
a wage. At the very least, it means many will
judge those of us with an “invisible” disability
like a brain injury. Surely if we look “normal”
then we must be cheating the system if we are
on a pension!
A lack of understanding
The finger pointing levelled at my friend
is not really about her, but rather about the
lack of understanding that exists in the wider
community. The Great Depression of the 1930s
led to the provision of social welfare for the
sick, elderly and unemployed where there was a
genuine need. My friend does not need to hang
her head in shame. She can be thankful that
there are enough citizens out there who want to
have the safety net of social security in place for
people like her who fall through the cracks of
societal expectations.
Gerowyn Hanson is a regular contributor to Synapse and
passionate advocate for people with a disability. This is
article is adapted from her blog which you can visit at
http://gerowynhanson.wordpress.com
COMPENSATORY STRATEGIES
Much of rehabilitation after a brain injury involves learning compensatory strategies – techniques that
will compensate for lost skills that will never return, or only partially. Examples of these include:
• Note books, calendars, and post-it notes for short-term memory loss
• Beating fatigue by performing tasks for short periods at the best time (e.g. mid-morning)
• Breaking complicated tasks down into manageable pieces
• Relearning social skills.
These strategies become crucial for anyone wanting to return to work. The rehabilitation team will
often work with the employer to advise on the difficulties you are likely to face, and the compensatory
strategies needed to cope with working again. Visit www.synapse.org.au to read our comprehensive
range of fact sheets that cover many compensatory strategies.
You probably noticed that your loved one
made a lot of gains in the first few months
after injury. In the hospital, you were
probably relieved and hopeful the first time he
or she walked, talked, or showed any
improvement.
Your family member may still be improving,
but not as fast as earlier. Many family members
have questions about what they can expect
in the long term. Below are some general
“rules of thumb” about what improvements
to expect. Please keep in mind that everyone
is different, and that your family member may
show somewhat different improvement.
Six months after the injury
The fastest improvement happens in about
the first six months after injury. During this
time, your family member will likely show
many improvements and may seem to be
getting better all the time.
Six months to one year
You will still notice some improvements
happening between six months and one year
after injury. However, the changes may not
happen as fast as the ones you first saw, and you
may notice that the changes are smaller.
One to two years
The period between one and two years after
injury is different for different people. Some
people show more improvement. This may
be especially true if they had a lot of medical
problems during the first year that get better in
the second year. Other people start to level off and
show very little improvement between one and
two years. For people who show improvement,
the changes usually happen very slowly.
Two years and on
Most professionals agree that people usually
show little change after two years. Most people
continue to have some problems, although
they may not be as bad as they were early after
injury. Some common problems that tend
to last longer are slowed thinking, memory
and attention problems, and problems getting
organised. However, many people are able to
return to their activities in spite of problems.
For example, people may go back to work,
return to school, take care of their household,
or return to other activities that they did before
injury.
What influences the degree of recovery?
What makes the difference in who can do
these activities? This depends on:
•how severe the injury is
•what part of the brain is damaged
•the strategies they use to compensate
•the support they have.
The type and severity of the brain injury
is the part that you and your family member
cannot control or change. However, part of
it is also due to whether your family member
can use your help to get around the problems.
Two people with the same problems may have
different outcomes depending on how they go
about getting around their problems.
The amount of support they have can also
make a difference. For example, a person with a
boss who is understanding and willing to help
is more likely to go back to work and keep their
jobs. Having support from family and friends
can also help.
Many people with injury become socially
isolated. Their friends often stop coming
around and they feel lonely. You can help them
to find other supports, such as friends, church
groups, brain injury support groups, etc.
Even when your family member improves,
they may still need help with certain things
from time to time. One of the things people
often need help with is handling finances. They
may need help remembering to pay bills or
keeping up with their checkbooks. They may
have difficulty with spending more money than
they have or making financial decisions.
If you are really worried about your family
member’s ability to handle their money, you
may want to talk to a lawyer about obtaining
legal guardianship. This means that you can
make decisions for them in order to protect
them from being taken advantage of.
This excerpt from “Picking up the pieces after TBI: a guide
for family members” is reproduced with permission of
Angelle M. Sander, Ph.D., with Baylor College of Medicine
and TIRR Memorial Hermann. This free publication is
available for download from www.tbicommunity.org or
www.brainline.org. The work was funded by Grant No.
H133B03117 from the National Institute on Disability and
Rehabilitation.
The forgotten survivor
Young people in nursing homes
September 19, 1989, a date I will never forget, is the day my whole life changed
This is a serious social issue, which can and must be fixed
I am the spouse of a severe brain-injury
survivor. The past eighteen months have
been a time that is most difficult to put
into words.
No one (except for another spouse) can fully
understand the pain, frustration, loneliness,
isolation and exhaustion that I have felt. I have
had to continually fight for what is rightly ours
— payments by insurance, disability benefits
and the continued best management of my
husband’s care.
I am convinced that not all those who
work with brain injury survivors are fully
knowledgeable about the day-to-day behavioural
problems a family member encounters. While
the majority of professionals do have empathy,
families are not always “listened” to through the
long journey of rehabilitation.
In order to understand, from a family
member’s perspective one must truly listen and
then risk the price of becoming involved. It is
much easier to disregard problems voiced by the
family, or to make judgemental statements about
family interactions. The biggest breakdown in
communication I’ve found is when a patient is
discharged from the rehabilitation centre. The
family is left with no support system as they
enter into one of the most crucial times, in
terms of rehabilitation, since the injury.
As a spouse, I have watched as my husband
received treatment from every aspect of
acute care and continued rehabilitation;
ICU, surgery, various therapies (physical,
occupational, recreational, and speech) as well
as psychological and vocational counselling.
Meanwhile, I have remained on the sidelines,
dealing with exhausting phone calls, paperwork
and case management. In addition, I’ve driven
thousands of miles to visit my husband and
provide continuing rehabilitative care. As if
this is not enough, I’ve also had to struggle
to maintain a home, keeping some semblance
of normal family life, being both mother and
father to our children as well as a caregiver.
Another burden placed on the family is
the role of educator. It’s necessary to educate
other family members, friends and even some
professionals on the devastating effects of
traumatic brain injury. At times, I’ve wanted to
wave a flag and say “Don’t you see me? I’m here
and I’m hurting also!”
I would like to say that while we are
attempting to provide survivors with the best
comprehensive care possible, we are forgetting
the other trauma victim — the family. We
must address the family and their needs, and
attempt to provide them with better immediate
education and support systems. We must view
the whole family as injured, for truly they are.
I have found that resolutions to problems do
not come easily so it’s necessary to live up to the
term “survivor.” Don’t give up! Resolve to make
a difference:
Educate others — then they will have no
excuse for their ignorance.
Seek good counsel — employ a lawyer
knowledgeable about brain injury to aid you in
the resolution of problems that are too big for
you to handle alone.
Channel your anger — focus on worthwhile
ventures, become an advocate, and call your
representatives and politicians. Be informed of
current legislation and do your part to be heard.
Don’t lose confidence in yourself — remember
that criticism comes freely to the one who serves
as primary caregiver. Remember that it’s easier
to judge another when you haven’t walked in
their shoes. Try not to take it personally.
Forgive others — try to restore broken
relationships. You’ll need all the support you
can get.
Demonstrate your knowledge of brain injury
— you should expect to be treated as an equal
member of the rehabilitation team. If you
are not being heard, seek a new professional
support system. Remember, this is your loved
one that you are concerned for — you know
them better than anyone else. You live with
them and face all the day-to-day problems that
no one else sees.
Network — get into a support system with
others who do understand.
I believe that we can network and support
each other especially as spouses of brain injury
survivors. We can reach out and encourage each
other as we all share similar circumstances.
- Nancy Crinnion, R.N.
No part of this article may be reproduced or retransmitted
in any manner and/or for any reason without the express
permission of TPN, Inc. Email them at: [email protected]
There are too many young Australians
stuck in nursing homes. An estimated
3500 people under the age of 60 live in
nursing homes, which are not suited to their
needs. Many of these people are socially isolated
and have been forgotten.
The facts
It is a sad fact that 82% of young people
living in nursing homes never go out to visit
their friends. Nearly half never go on trips to
the shops or the movies or sports events. Here
are some sobering statistics about young people
living in nursing homes:
•56% don’t have a say in when they go to bed
•52% won’t be visited by a friend this year
•27% are parents of school-aged children
•13% hardly ever go outside.
The following quotes illustrate how moving
from a nursing home to an environment that
is more home-like has given these young
people the ability to make everyday choices for
themselves. These people participated in the
“My future my choice initiative” and were part
of the Summer Foundation’s evaluation of that
same program:
“Right now, you know, I love it. I can play
music loudly and I can play my own music.”
“Clean my own clothes. . . just chuck them
in the washing machine, put some powder in
it, and psssh.”
“You can make your own mind up what
you want for tea. what you want for lunch or
whatever.”
“Just being yourself, eat when you want to
eat, just be who you want to be.”
“At first, it was unusual to go out the front
door but now I’ve done it quite often and it’s
just. . . it’s not so formal. . . you’re free. I have
a life.”
“It feels like home. I never could say I wanted
to be in a nursing home. I could never call it
‘home’.”
What is needed
Young people in nursing homes want a range
of creative and innovative solutions to enable
them to actively participate in the community
and have a real choice about where they live.
There needs to be systemic change and a
dramatic increase in the number of supported
housing options in Australia to stem the flow of
young people into nursing homes.
Young people with disability want to be able
to make the fundamental everyday choices the
rest of us take for granted: what to eat, when to
eat it and what time to go to bed. They have
told us they do not necessarily want to live in a
group home with other people with disability,
and would like to be part of the community,
where they have ready access to community
facilities and services.
The solution
In countries such as Canada, integrated
models of housing have been operating
successfully for over 15 years.
For the past twenty years there have been
various incarnations of the group home model
where people with disability are expected to live
with five or more other people with disability.
Group homes work for some people but not
for everyone. People with acquired disabilities
such as brain injury or Multiple Sclerosis often
have partners and/or school age children – their
needs are therefore not met by group homes.
In addition to building more housing, we need
to expand the range of housing options so that
people with disability have real choice about
where they live.
Since 2008, the Summer Foundation has
been working on the development of the next
generation of housing and support for people
with disability in Victoria who require access
to 24-hour, on-call support. A similar model
began several years ago as a Synapse initiative in
Queensland. The National Disability Insurance
Scheme (NDIS) can play a key step in providing
independence for young people with disabilities
as it could provide the necessary funding to
finance supported accommodation options.
The Summer Foundation is committed to growing a
movement that will resolve the issue of young people
living in nursing homes. Supporting, informing and
empowering people with disability and their families is
key to resolving this issue. Three key areas of focus are
conducting and fostering research, supporting people with
disability to share their stories, and developing integrated
housing demonstration projects. Visit their website for more
information: www.summerfoundation.org.au
USEFUL STRATEGIES FOR PARENTS
• Become involved in the hospitalisation and rehabilitation stages
• Learn as much as possible about the brain injury to assist developing realistic expectations
• Realistically consider the strengths of individual family members
• Identify areas where assistance would be beneficial and asking for help
• Talk about concerns with other family members/friends
• Take time to deal with the effects of the injury
• Keep daily routines as normal as possible
• Be open to involvement in support groups and counselling
• Spend quality time with other family members, and develop a network of friends and activities
• Use supports such as regular respite when needed to rest, rejuvenate, and care for yourself.
My adult
child has
a brain
injury
A brain injury can be
a devastating experience
for the parents of an
injured adult child
Parents say they have had no time to
prepare for the many changes that occur
to their lives as a result of a son or
daughter’s brain injury. Often, now that their
family have grown, parents are at the stage of
planning for their own future. It seems that life
and those plans disappear in an instant.
Changes in personality and behaviour
of their child can be very disconcerting for
parents. Displays of childish behaviour can be
embarrassing, while mood swings and having
to provide guidance and feedback can be
challenging.
Possible reactions
Like all family members, parents can
experience many emotions coming to terms
with the fact that their adult child has acquired
a brain injury. These could include:
•Shock and denial at the immediacy and
severity of the injury and the consequences of
brain injury / changes to your child
•Anger and frustration at the circumstances
of the injury, of how it has impacted on your
life and how your child’s life will change
•Loss – changes to plans, financial losses,
grieving the loss of the future parents had
anticipated for themselves and their children
•Resentment and guilt – resenting the
changes, feeling that you could have “done
something better”, feeling guilty for feelings
of anger, resentment and frustration
•Loneliness and isolation – many parents
report the gradual withdrawal of their
friends as their lives have now taken different
directions with different priorities
•Mourning/chronic sorrow – Grieving
processes rarely end, as a loved one remains in
your life, but often as an altered person.
It is common to mourn the personality and
characteristics that have been lost while learning
to relate to a different person. Mourning is
never completed but can begin again with
reminders of what has been lost. Some parents
say that they have lost interest in things they
used to enjoy.
Relationship & role changes
Depending on the severity and nature of the
brain injury relationships can change in several
ways.
A brain injury places strain on many
relationships and marriages. Concern about a
child’s relationships, practical issues of how to
help, and uncertainty about how the situation
will work out is common.
Tensions between parents themselves can
occur. Different attitudes and expectations and
different ways of coping can aggravate this.
It is possible that the injured adult may move
back home and parents may become carers.
If this involves basic personal care and cueing
with daily living tasks, it may be like parenting
a child all over again. The relationship is
no longer an adult relationship and this can
be especially difficult if there are challenging
behaviours as well.
Having carers or lifestyle support workers
coming into the home on a regular basis can
place a strain on relationships as parents feel
that their lives are less private.
Help with grandchildren may be needed
when one parent has a brain injury and the
other is committed to a significant caring role
or full-time employment.
Parents often worry about how the brain
injury has affected their relationships with their
other children. Some parents find themselves
being more over-protective of their other
children. Others worry that they are neglecting
their other children and feel their resources
(emotional, financial, time) are stretched in
this regard.
Relationships with friends and extended
family may also change especially if parents feel
that others do not understand the brain injury.
Many parents find that roles in the family
change as a result of their adult child sustaining
a brain injury:
• Parents may have to take on a carer role with
their adult son/daughter
• Previously valued roles may change e.g. giving
up work to be a carer, loss of retirement plans
• Grandparents may become more involved in
their child’s own family as a result of the brain
injury and may even take on the parenting
role with their grandchildren
• Parents may need to take on a more supportive
role in relation to the spouse of their son/
daughter
• Parents may need to help educate and support
other family members and friends about brain
injury.
Practical consequences of a brain injury
There may be many practical consequences
of the brain injury. At times a brain injury will
result in challenging behaviour which requires
understanding of the reasons for the behaviour
and strategies to manage them. Professional
assistance may be required in some cases.
Parents may need to assist financially,
particularly if the injured person was the primary
income earner. This may result in an inability to
meet previous financial commitments such as
mortgage repayments, car payments, childcare
or school fees. Parents may find that they need
to be involved in provision of:
•Accommodation
•‘Hands on’ assistance e.g. feeding, bathing
•Transport to appointments and activities
•
Assistance with managing finances and
making decisions
•
Assistance with maintaining pre-existing
relationships
•Social support and social outings.
Remember to ask other family members or
services to provide assistance. Encourage the
person with a brain injury to gain as much
independence as possible as it is important
to allow them to learn new skills and to be
as independent as possible. Be guided by the
professionals working with them.
Remember that a brain injury does not
change everything about a person and some
personality traits, behaviour traits and interests
will remain unchanged.
This is fact sheet is reproduced with the permission of
ABIOS (Acquired Brain Injury Outreach Service). Visit
www.health.qld.gov.au/abios/ to see their full range
of fact sheets. ABIOS is a specialist community-based
rehabilitation service to enhance the service system for
people with Acquired Brain Injury (ABI) and their families.
Inflexibility &
obsessions
Rigid thinking, inflexibility and obsessive behaviour
after a brain injury are usually due to damage in the
frontal lobes. We take it for granted, but the ability
to see the world from someone else’s point of view,
tolerate uncertainty, or keep a balance of interests in
our lifestyle are all complex cognitive skills.
Unfortunately, the frontal lobes are very commonly
affected in traumatic brain injuries, so these issues
frequently go hand-in-hand with lack of selfawareness, anger, depression, fatigue and reduced
social skills. The person may lose the ability to jump
from topic to topic in conversation, and becomes
bogged down in talking about a favourite issue.
Obsessive behaviour is often worsened by anxiety.
What the family can do
Often the hardest part for a family is accepting that
these new character traits are not intentional. Brain
injury is often called the ‘invisible disability’ – because
the injury can’t be seen, it is hard to accept that a loved
one has seemingly become arrogant, opinionated,
intolerant of others and obsessed with things everyone
else finds boring. Understanding the effects of the
brain injury often brings families to a point where
they can accept the changes and enact strategies to
manage the situations that arise.
Try not to respond to difficult situations with criticism
or an angry outburst. Families may need to understand
that their opinions, ways of doing things and favourite
interests will not be accepted. Instead of feeling
hurt or angry, it is best to distract the person with
other topics or activities, or respond with any chosen
behavioural strategies that have been developed.
It may be worth getting in touch with your local
Brain Injury Association to develop a behaviour
management program.
In some cases, a brain-injured person can be very
skilled at manipulating their family emotionally. If
their demands aren’t met, they try various strategies
to get what they want — such as threats, pleading,
criticising the lack of compassion, or sullen silences.
Family members are often surprised that their loved
one’s skills in manipulation are so effective when
their overall social skills have dropped significantly. In
these cases it is vital for the family to have agreed on
boundaries for acceptable behaviour, not be drawn
into arguments.
Families can also look for underlying causes. Anxiety
and insecurity can worsen any of these behaviours,
but can be hard to counteract. Where possible, look
for the triggers that worsen the behaviour, and see if
these can be avoided or reduced. Examples of this may
be insecurity in new social environments, meeting
strangers, or a change in routine.
If there is a local support group for survivors of brain
injury, it may help if they can go along. Sometimes
seeing similar behaviours and attitudes in others can
bring about some level of self-awareness.
Never say
never
I was in charge of a child whose brain
function was completely shut down
except for her basic needs for staying alive.
According to the CT scan, she could neither
see, hear nor know anything. All I could do
each day was hug her, talk to her, rock her, sing
songs to her, pick her up and put her on my lap.
However, then she started moving her limbs
whenever she heard my footsteps. She also
started smiling when I tickled her on her face,
singing the Japanese tickling nursery rhyme.
Finally she began to smile even before the
tickling part, and her expression of joy indicated
a consciousness and that she was understanding
the nursery rhyme.
Yuri-chan, had suffered an accident while
having a bath and the CT scan showed nothing
but a blank in her brain. At first she gave no
reaction to any stimulation. But after a while,
she had begun responding with her eyelids.
Then I was sent to another school and did not
see her for a long time. However, unexpectedly
one day in the hospital I met her again.
Surprisingly she was sitting up in a wheelchair
and listening to her mother talking. It was such
a joy to see her recovery and to feel her mother’s
love and care for her.
From my involvement with other children
who were also in this so-called vegetative state,
I now strongly believe that the most important
thing for the carers is to understand that no
matter how unconscious the patients look, they
may be able to understand, hear and see most
things, and that everyone has feelings.
Over the last five years Kakko-chan has
been the main carer for her colleague, Toshiya
Miyata (Miyapu) who suffered from a large
brain-stem haemorrhage, and developed this
locked-in syndrome. At first the doctors had
told her that Miyapu would live only three
hours after his stroke and he was admitted to
hospital. After surviving for some weeks, the
doctors then told her that he would never
regain consciousness and that his body would
remain paralysed for life. However, Kakko-chan
believed that he could recover and so she tried
to rehabilitate him herself. He can indeed now
talk with a communicating device and go for
outings in a wheelchair. His aim is to go home
and live there by himself with support.
Through her experiences, she has learnt that
there may be a way for patients in a so-called
vegetative state to recover. Although not in
the medical field, she provides methods from
the educational and welfare fields. She is very
passionate about giving people this knowhow, having been told too many times about
people left bedridden without communication
or rehabilitation.
The Snow White Project
With the help of others she has founded the
Snow White Project which aims to glean and
spread information on ways to assist recovery
from the so-called vegetative state. It covers
communication methods, oral care, eating,
rehabilitation methods, nursing care and more.
Advice for carers
Some simple advice to carers:
•Keep talking to and encouraging the patient
•Stimulate their hearing with music and voice,
avoiding multi-sound contexts
•Work on the sense of smell, such as pleasant
aromas in the room
•Clean and stimulate the inside of the mouth
•Sitting up - as much as possible
•Moving arms and legs
•Skin care
•Provide pressure to fingers/toes to avoid
deformity
•Take the patient out in a wheelchair
•Keep detailed diary records
•Do the rehabilitation with joy.
Miyapu’s recovery has been filmed from
four months after he had his stroke. The
resulting Japanese documentary film is called:
“Blazing a New Trail ~ Towards the day when
miracles become commonplace”. This is a
heart-warming documentary film which shows
us the importance of belief, love, and never
giving up hope. Screening for the first time in
Australia, this documentary film (with English
subtitles) will be shown on consecutive nights
in Melbourne and Sydney, 14 June and 15 June
2014. In addition, Kakko-chan will be present
to talk about her touching experiences with
her students and Miyapu. Her stories are truly
moving.
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Because 1
with a Brain Injury
!
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need yo
Because without organisations like ours,
Because buying just one BEANIE will help us improve the level
everyday mothers, fathers, brothers and
sisters would be left without the support
they so desperately need when trying to
reconnect their lives after a brain injury.
Because the more Beanies we sell, the louder and stronger
of support to families. In turn you will also be showing the 1 in
12 Australians with a Brain Injury they are not alone.
our message becomes and the more support we can offer.
Because BANGONABEANIE supports one of the largest and
most disadvantaged disability groups in Australia, and
works to transform an ‘Invisible Disability’ into a
very visible one.
Because all money raised through
BANGONABEANIE goes towards providing
services for people with Brain Injury, helping
improve their quality of life.
This article by Junko Ichii Blades has been translated from
Japanese. There is an English-language site for the Snow
White Project at http://shirayukihime-project.net/en/ but
please note that translations may be imperfect.
PLEASE MEET KAKKO-CHAN FROM JAPAN
Katsuko Yamamoto, popularly known as Kakko-chan, is a speaker,
writer and school teacher. She has been working in special needs
schools in Japan for 35 years and believes that even in a vegetative
state people have feelings and thoughts, and in many cases can
see, hear and understand. However, she says “I am afraid that this
is still not common knowledge in society. It is unbearable for me to
think that some patients cannot communicate, and therefore have
to give up their recovery process, simply because the carers do not
have this information and know-how.”
Like to get involved?
Just jump online and buy a
beanie at BANGONABEANIE.com!
National Brain Injury Awareness Week 11-17 August 2014
Living alone
with dementia
Practical tips from
Alzheimer’s Association
Queensland
National Disability
Insurance Scheme
The National Disability Insurance
Scheme (NDIS) aims to provide longterm person-centred care and support to
all Australians with a significant and ongoing
disability. It has the potential to meet the
support needs of many Australians who have
acquired a brain injury or other disability.
The NDIS offers a new way of providing
community linking and individualised support
for people with permanent and significant
disability, their families and carers. It emphasises
allowing people with a disability to have choice
and control over decisions where possible.
FAMILIES & CARERS
The NDIS will provide information, referral
and linkage to ensure families and carers are able
to access supports available in the community
to assist them in their role.
The NDIS processes will enable people with
a disability to include significant others as part
of discussion about the necessary supports for
now and into the future.
Guardians or nominees of people with
disability play an important role in the NDIS
to represent the interest of the person and they
can contact us on behalf of the person.
PEOPLE WITH A DISABILITY
If you meet the access requirements you can
access funding for the reasonable and necessary
supports needed to enable you to achieve
your goals. If you do not meet the access
requirements, and you live in a launch site, the
National Disability Insurance Agency (NDIA)
may be able to provide you with information
and referral to other supports.
OUR CONCERNS ABOUT THE NDIS
The NDIS has the potential to dramatically
change lives for the better. However, we have
concerns about various facets of the scheme.
Rorts
Vigilance will be needed to ensure that funds
go to improving lives, and diverted into the
pockets of others. It is interesting to note that
websites from overseas have already sprung
ADVOCACY
There are three broad forms of individual advocacy available to NDIS participants.
SUPPORT TO ACCESS MAINSTREAM AND COMMUNITY SERVICES: The National Disability Insurance
Agency will provide information and referral to participants to enable people with disability to engage
in mainstream and community activities and develop self-advocacy skills.
LEGAL REVIEW AND REPRESENTATION: This will include advocacy on Agency decisions, for example, an
appeal against a decision not to allow a person access to the Scheme. Advocates will speak on behalf of a
participant, or act for or represent them in processes.
SYSTEMIC ADVOCACY: The National Disability Insurance Agency will work with community to achieve
positive change to inclusion for people with disability. This work will, in part, be a key focus for the local
area coordinators involved in the scheme at the local level. At the national level the Agency will work to
influence national strategies and how they enable positive inclusion.
up that offer host provider services – working
with a client and their family to help them to
self-direct their disability supports and services.
While these may be legitimate businesses, we
hope the potential for rorts is minimised.
Quality vs quantity of care
Emphasis will rightly be placed letting clients
choose their support services where possible.
However, there may be a tendency to focus
on the cheapest service providers instead of
the most appropriate e.g. support workers
from the cheapest service provider may have
less training and not be equipped to deal
with challenging behaviours, or the issues with
specific disabilities. Host providers working
with a client and their family will need to aware
of the need for trained experienced support
workers when dealing with complex behaviours.
Quality of life
The NDIS is meant to improve the lives of
Australians with a disability, as well those who
care for them. How do we measure whether
quality of life is being improved through the
services that are being funded? At Synapse, we
are working on ways to measure whether we are
improving a client’s life through:
•Effectiveness – measuring, client satisfaction,
quality of life, and changes in behaviour
•Efficiency – economic models
•Reconnection – the degree to which a client is
included into the local community.
Visit www.ndis.gov.au to find out more about the National
Disability Insurance Scheme.
Many older people choose to remain
living in their own home alone. This
decision is based on a number of reasons.
Most who make this decision do so to remain
independent. A few have no family to whom
they can turn for assistance, while others simply
do not wish to live with their family or believe
it will make life difficult for all concerned.
Residential care or nursing home placement is
certainly something few, if any of us, ever wish
to consider for ourselves. You have the right to
stay in your own home if you wish.
For many, independence is of greater priority
than physical safety. Since Alzheimer’s disease
and other dementias are progressive diseases,
the physical and behavioural symptoms
experienced will gradually get worse over time.
It is therefore important to plan in advance for
any assistance you may need to help maintain
your independence.
Consider the following suggestions:
•Ensure work, financial, legal and health
matters are addressed as soon as possible
after receiving your diagnosis. If left until late
in the disease, the power to make decisions
about these matters may be taken away from
you.
•Inform your bank if you have difficulties with
keeping track of your accounts, bill payments
and other banking needs. They may provide
special services for people with Alzheimer’s
disease.
•Arrange for direct payments of Social Security
cheques, pensions and the like, into your bank
account.
ALZHEIMER’S DISEASE
Alzheimer’s disease is the most common cause of dementia and accounts for 50% to 60% of all cases.
It destroys brain cells and nerves disrupting the transmitters which carry messages in the brain,
particularly those responsible for storing memories. It was first described by the German neurologist
Alois Alzheimer in 1907. He wrote of a physical disease in which brain cells are destroyed. The
appearance of this destruction is referred to as “plaques and tangles”.
During the course of Alzheimer’s disease, nerve cells die in particular regions of the brain. The brain
shrinks as gaps develop in the temporal lobe and hippocampus, which are responsible for storing and
retrieving new information. This in turn affects people’s ability to remember, speak, think and make
decisions. The production of certain chemicals in the brain, such as acetylcholine is also affected. It is not
known what causes nerve cells to die.
•Stay in close contact with your doctor and
specialist for regular reviews of your medical
situation. There are other treatable illnesses
which, if left untreated, can exacerbate the
symptoms of dementia.
•Seek information about getting assistance
in the home with housekeeping, general
home maintenance, transportation and home
nursing.
•Plan for home meal deliveries if available in
your area.
•Arrange regular home maintenance checks
e.g. through Home Assist Secure.
•Have a smoke alarm fitted and check it
regularly.
•Leave a set of keys to your house with a
trusted neighbour.
•Keep a list of emergency numbers, in large
print, next to the phone.
•Ask a friend or relative to assist in arranging
your clothes and drawers to make it easier for
you to find what you need to get dressed.
•Label cupboards and drawers with words or
pictures that describe their content.
•Arrange for a daily visit or telephone contact
by friends, relatives or a community worker to
remind you of meal times, appointments or to
take your medications.
•Label photos with the names of those you see
most often.
•Mark days off on a calendar to keep track of
time. Maintain your daily routines wherever
possible.
Reproduced with permission of Alzheimers Association
Queensland. Visit www.alzheimersonline.org for a wide
range of fact sheets and their support services or call their
free Helpline on 1800 639 331.

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