Adults with ASD - Faculty of Medicine

Adults with Autism Spectrum Disorders
in Newfoundland and Labrador
“A Constant Struggle ...”
A report prepared by the
Health Research Unit
Division of Community Health
Faculty of Medicine
Memorial University of Newfoundland
April 2003
Principal Investigators
Michael Murray, PhD, Division of Community Health, Faculty of Medicine
Memorial University of Newfoundland
Patricia Canning, PhD, Faculty of Education, Memorial University of Newfoundland
Ted Callanan, MD, Discipline of Psychiatry, Faculty of Medicine, Memorial University of
Newfoundland
Cathy Vardy, MD, Child Development Clinic, Janeway Child Health Centre and Discipline of
Pediatrics, Memorial University of Newfoundland
Research Team
Ann Ryan, MSc, Coordinator (HRU, Faculty of Medicine, MUN)
Montgomery Keough, BSc (Hons), Researcher (HRU, Faculty of Medicine, MUN)
Sara Heath, BSc, Database Support (HRU, Faculty of Medicine, MUN)
Advisory Committee*
Joyce Churchill (Autism Society of Newfoundland and Labrador)
Alan Corbett (Department of Health & Community Services)
Robert Gauthier (Department of Education)
Paula Hennessey (Department of Health & Community Services)
Barbara Hopkins (Autism Society of Newfoundland and Labrador)
Linda Longerich, (Health Research Unit, Faculty of Medicine)
Ken O’Brien (Department of Human Resources and Employment)
Elizabeth Oliver (Autism Society of Newfoundland and Labrador)
Susan Tobin (Autism Society of Newfoundland and Labrador)
David Vardy (Autism Society of Newfoundland and Labrador)
*Disclaimer: Not all Advisory Committee members necessarily endorse the comments, suggestions and
recommendations contained in this report.
The telephone survey and focus group comments given by parents and caregivers with regard to their
past experiences with health and education services are not necessarily experiences that would be
encountered at the present time.
Acknowledgments
The principal investigators would like to express their appreciation for the support and cooperation of
the following organizations and individuals, without which this study would not have been possible:
The Department of Health and Community Services of the Government of Newfoundland and
Labrador, and the Newfoundland and Labrador Centre for Applied Health Research for their
financial support to conduct this research;
The regional branches of Intervention Services of the Department of Health and Community
Services;
The Department of Education of the Government of Newfoundland and Labrador and the
District School Boards;
The Board of Directors, the Executive Director and the regional contacts of the Autism Society
of Newfoundland and Labrador;
The Department of Human Resources and Employment of the Government of Newfoundland
and the Supported Employment Corporations of Newfoundland and Labrador;
Community and volunteer agencies within the province that support individuals with disabilities;
The professionals working with persons with ASD that supported this project by participating in
the key informant interviews and focus groups;
The adults with ASD that participated in the individual survey;
The parents and caregivers of adults with ASD in the province who gave us their comments and
opinions in the focus groups and the telephone survey;
Christa McGrath for typing and laying out the report.
Table of Contents
Executive Summary . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . i
Chapter 1:
Introduction and Background . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1
Chapter 2:
Methods . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3
Chapter 3:
Demographics and Diagnosis . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 7
Chapter 4:
Education . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 11
Chapter 5:
Current Living Arrangements and Daily Activities . . . . . . . . . . . . . . . . . . . . . . . . 15
Chapter 6:
Communication, Socialization and Behavioural Concerns . . . . . . . . . . . . . . . . . . . . 21
Chapter 7:
Challenges for Adults with ASD . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 29
Chapter 8:
Parent/Caregiver Needs and Services . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 39
Chapter 9:
Adults with ASD . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 43
Chapter 10: Solutions Suggested by Parents/Caregivers . . . . . . . . . . . . . . . . . . . . . . . . . . . . 47
Chapter 11: Current Programs and Services Available to Children and Adults with ASD . . . . . . . 53
Chapter 12: Recommendations . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 61
References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 67
Appendix A:
Appendix B:
Appendix C:
Appendix D:
Appendix E:
Appendix F:
Appendix G:
Appendix H:
Form Q-1
Form FG-1
Form Q-2
Criteria for Challenging Needs
Individual Support Service Plan
Criteria for Possible Diagnosis of ASD
Glossary
Definition of Criteria C
Executive Summary
Background
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•
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Autism is a lifelong developmental disability typified by qualitative impairments in social
interaction and communication, and restricted repetitive and stereotyped patterns of behaviour,
interests and activities.
Reported prevalence of Autism Spectrum Disorders (ASD) ranges from 4.5 to 91 per 10,000
depending on the conditions included in the spectrum. It tends to be three to four times higher in
males than in females.
Little is known of the prevalence, age and sex distribution of adults with ASD in Newfoundland and
Labrador.
Little has been documented as to the needs and gaps in service to adults with ASD.
In 2001, a study was initiated to investigate the prevalence and needs of adults with autism in
Newfoundland and Labrador and to consider the implications for services and programs.
Research Design and Methodology
•
•
•
•
•
The study consisted of the three main components: two telephone surveys, focus groups and
interviews with key individuals, and a review of current programs.
The first telephone survey was of parents/caregivers of adults (15 years plus) with ASD in
Newfoundland & Labrador. A supplementary survey of a limited number of adults with ASD was
also completed.
Focus groups and interviews were carried out with a sample of parents and professionals to address
concerns emerging from the telephone survey.
A literature/internet search was conducted to scan for available services for adults with autism both
within and outside the province.
An estimation of prevalence rates for adults aged 18 years and over was made based upon
information from the telephone survey and information from Advisory Committee members for
individuals not participating in the survey.
Main Findings
The following nine sections summarize the findings from the research study.
(1) Demographic and Diagnosis
• The prevalence of ASD in Newfoundland and Labrador among adults aged 18-19 years was
estimated at 14 per 10,000 population. The male to female ratio in adults was 2.2:1.
• The age of initial diagnosis for the adults with ASD was between ages two to four years
according to reports by parents/caregivers.
• Many parents reported difficulties and delays in obtaining a diagnosis for their child.
i
(2) Education
• Some parents or caregivers were dissatisfied with certain aspects of the education and support
received during the school years, including access to services, lack of awareness and training for
teachers and student assistants, and lack of flexibility in the hiring of student assistants.
• Satisfaction with schooling centred on the individual efforts of particular teachers and school
principals.
• Only a minority of parents/caregivers had participated in planning for future support services
and transition beyond the school environment.
(3) Current Living Arrangements and Daily Activities
• Most adults with ASD identified were living at home with a family member. The extent of
their independence in daily living activities varied, with most assistance required for meals and
shopping. Assistance in daily living activities was provided either by parents or through Health
and Community Services.
• Reported daily activities of adults with ASD depended on several factors including the
independence and initiative of the individual, the availability, training and initiative of respite
workers, and the availability of recreational and employment opportunities in the community.
• Appropriate recreational activities were considered to be unavailable or inadequate especially
outside the capital region.
(4) Communication, Socialization and Behavioral Concerns
• About one third of parents reported that their adult dependent with ASD could not
communicate verbally.
• Most parents had concerns about their child’s social interaction. Parents of male children were
more likely to have these concerns. The most frequent concerns and barriers to social
interaction identified by parents were: lack of facilities, behavioural problems, the individual’s
limitations, and society’s attitude.
• Almost two thirds of respondents had concerns about the behaviour of their adult dependent.
These behavioural problems influenced other areas of living, such as normal home life, access to
respite workers, alternative living arrangements and community inclusion.
(5) Challenges for Adults with ASD
• The challenges most frequently mentioned by the parents were quality of life, lack of services
and supports, and public attitudes and awareness of ASD.
• The supports and services most frequently needed were community services (e.g. respite,
BMS), living and recreation options, employment, life skills (communication and social
interaction), awareness (more understanding of ASD by professionals and the general public),
and information on available services and supports.
(6) Parent/Caregiver Needs and Services
• Community awareness/education for the general public and for professionals, and respite care
were highly rated as needed services for parents.
ii
• Almost half the parents/caregivers had received respite care and were generally satisfied with
the service.
• Reasons given for dissatisfaction with respite care included staff turnover, low wages, limited
number of hours, access/availability, and inadequate training.
(7) Adults with ASD
• Satisfaction with schooling, as reported by individuals with ASD surveyed, depended on the type
of facilities and individual teachers.
• Most of the individuals surveyed replied that they were able to perform daily activities such as
preparing simple snacks, taking care of their personal hygiene, etc., with little or no help.
• All of the respondents occupied the majority of their time at home in such activities as listening
to music, watching TV, using the computer, etc.
• A majority of the individuals surveyed indicated that they were interested in working outside
the home and/or furthering their education.
(8) Solutions Suggested by Parents and Caregivers
• Participants felt that more information about potential service and support options should be
provided.
• Participants felt there is a need to further explore recreational opportunities for adults with
ASD.
• Participants felt that services should be individualized and take into account long-term living
arrangements.
(9) Current Programs and Services Available to Children and Adults with ASD
• There are no community agencies and/or government departments that offer supports and
programs specifically designed to meet the needs of adults with ASD.
• There are services specifically designed for preschool and school–age children with ASD offered
by the Autism Society, Department of Education, and the Department of Health and
Community Services, and school boards. In recent years, there has been a relatively rapid
development of services for children with ASD in the Province.
• Most services presently available in the province for children and adults with special needs
(including persons with ASD) are generic programs and supports for persons with disabilities.
These are provided by provincial government departments and a number of community groups
and volunteer organizations.
• In other areas of North America, a number of residential, vocational, and employment programs
that have been developed and implemented for persons with ASD.
iii
Recommendations for a Provincial Model
In view of the increasing number of individuals being diagnosed with ASD, it is important that:
a) agencies and professionals are made aware of the revised estimates of prevalence;
b) research and planning is extended to monitor and review developments in training and program
delivery;
c) policies and plans are developed to address the needs of adults with ASD and their families;
d) services are developed to meet the particular needs of adults with ASD.
The following recommendations are designed to build upon the existing support that is currently
available for individuals with ASD. The orientation is towards improving support for adults with ASD
who have tended to be neglected in program planning and service delivery. It should be noted that
because of the range of development among children and adolescents with ASD, some of these
recommendations would also apply to them. Also, because of the variability of expression of ASD, the
recommendations should be viewed and operationalized depending upon the needs and strengths of
individuals and their families. More details of each recommendation are contained in the report.
(1) Research and Training
1.1 Research
The current report contains the first extensive study of the distribution and needs of adults with
ASD in the province of Newfoundland and Labrador. It provides a start to understanding the
particular challenges faced by adults with ASD and their families. However, there is a need to
extend and continue this program of research. Specifically:
• More Research: An ongoing program of research should be encouraged to monitor the
prevalence of autism and related disabilities in the province and needs of those individuals and
their families.
• Program Evaluation: Current and new programs for adults with ASD should be evidencebased and be subject to ongoing evaluation
• Advisory Committee: An independent specialist advisory committee should be established to
conduct an ongoing review of new initiatives in the development of services for adults with ASD
and to develop proposals for specific interventions/ programs and research projects.
1.2 Training
Both parents and professionals expressed a desire for improvements in the level of training provided
to the various professionals who work with adults with ASD. There is a need to improve the level
of knowledge about, and awareness of, appropriate interventions and skill in providing support and
interventions among relevant professionals and support workers.
iv
• Educational Professionals: Guidance counsellors, educational psychologists, and special needs
teachers should have training in assessment methods, needs identification and instructional
strategies for individuals with ASD.
• Educational Support Workers: Steps should be taken to improve the training and quality of
service provided by student assistants.
• Social Service Professionals: Social and community workers, recreation therapists and
employment counsellors should have training in employment and recreational opportunities for
adults with ASD.
• Respite Workers: The training of respite workers in the management of adults with ASD
should be improved.
• Health Professionals: Physicians, nurses, speech language pathologists and clinical
psychologists should have training in the diagnosis and management of adults with ASD.
• Teamwork: Training to provide services to adults with ASD should include preparation to
work as a member of an inter-professional team.
(2) Policy and Programs
2.1 Service and Accessibility
Although there are ongoing advancements in the development of services for adults with ASD, it is
essential that the provision of those evidenced-based services is governed by the principles of equity
and flexibility to ensure that all individuals with ASD have access to the most appropriate services
and support.
• Equitable Access: All individuals with ASD should have equitable access to specialist resources
irrespective of their place of residence in the province.
• Models of Delivery: There needs to be flexibility in the continuum of services and model of
delivery (inclusion/extrusion) to meet the needs of adults with ASD.
• Information: Access to relevant information on services and support for adults with ASD
should be improved (e.g. through the development of a dedicated searchable webpage).
• Specialist Training: Ways to increase access for adults with ASD to professionals who have
training in augmentative communication and behaviour management should be explored.
2.2 Home and Respite Support
The families of adults with ASD have been frequently ignored. Developments in service provision
should consider support for families a priority.
v
• Home Support: Ways to provide greater home support (personal care attendants) to adults
with ASD should be investigated.
• Respite Provision: Alternative forms of respite provision for parents/caregivers should be
explored (e.g. private homes and group homes).
• Daytime Programming: Consideration of alternative forms of day placement needs to be
considered for those adults who are not employed.
2.3 Community Resources
Due to the broad range of ability levels of adults with ASD there needs to be a spectrum of services
and supports available in the community.
• Recreational Activities: Dedicated recreational activities for adults with ASD that are
accessible and address the particular needs and interests of these individuals should be developed.
• Employment Opportunities: Community-based competitive and supportive employment
opportunities for adults with ASD need to be developed.
(3) Service Provision and Support
The services and supports contemplated in this model will need to exist on a continuum so as to be
able to respond to the diverse needs and circumstances of adults with ASD in the province.
3.1 Individuals with ASD
• Individualized Programming: The ISSP should be adopted as a planning process for the
lifelong support of individuals with ASD including consideration of needs in education,
employment and recreation as well as the future challenges for those with limited or no parental
support.
• Coordination of Health Services: In view of the recognized range of co-morbidities among
adults with ASD there is a need to closely monitor the various health needs of these adults.
• Living Arrangements: A variety of living arrangements from full supportive environments to
independent living should be available for adults with ASD based upon their individual strengths
and needs.
3.2 Families and Caregivers
• Families: Policy makers and professionals need to develop services to alleviate the particular
stresses and strains experienced by families/parents and caregivers of adults with ASD.
• Accountability: Efforts must be made to enhance the accountability in the provision of
services for adults with ASD though greater engagement with parents/ caregivers in the
planning and implementation of services.
vi
• Support Groups: Autism groups and societies should be supported in their efforts to provide
education, training, advocacy, and to establish self-help groups.
3.3 Public Agencies
• Public Awareness: Autism groups and societies should be supported in their efforts to
increase public awareness of the concerns of adults with ASD (e.g. through media campaigns and
school and workplace awareness campaigns).
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Chapter 1
Introduction and Background
Summary Points:
This chapter summarizes the background to the report.
•
•
•
•
Autism is a lifelong developmental disability typified by qualitative impairments in social
interaction and communication, and restricted repetitive and stereotyped patterns of behaviour,
interests and activities.
Reported prevalence of Autism Spectrum Disorders (ASD) ranges from 4.5 to 91 per 10,000
depending on the conditions included in the spectrum. It tends to be three to four times higher in
males than in females.
Little is known of the prevalence, age and sex distribution of adults with ASD in Newfoundland and
Labrador.
Little has been documented as to the needs and gaps in service to adults with ASD.
1.1 - Introduction
The term “autism spectrum disorders” describes a wide range of developmental disabilities with
difficulties in the area of socialization, communication and behaviour leading to life-long challenges.
Autism spectrum disorders (ASD), which are now usually believed to stem from a neurological
impairment of genetic origin, are characterized by severe and pervasive deficiencies in several areas of
general development, especially in reciprocal social interactions, in language and communications and in
the range of interests and activities. In addition, many persons with ASD may have unusual responses to
sensory inputs, hyperactivity, poor concentration, anxiety or depression.
Autism spectrum disorders take many forms. The most common forms typically appears during the first
three years of life; however, some are not apparent until later childhood. The severity of ASD is quite
varied. For example, some adults with ASD never speak, some learn limited speech, while still others
speak quite well but never master communication. The condition may also be accompanied by other
handicaps such as seizures or significant cognitive (intellectual) delays.
Estimates of occurrence vary widely. The prevalence rate for classic autism has generally been
estimated at 4.5 per 10,000 population (Lotter, 1996). Recent studies have established a prevalence of
autism of 10-12 per 10,000 (Gillberg, 1997). If pervasive developmental disorders are included, the
rate reaches 22 per 10,000 (Wing & Gould, 1979). A report by the National Autistic Society in the UK
estimates the prevalence of all autism spectrum disorders including Asperger’s Syndrome as 91 per
10,000 (Wing & Potter, 2002). The ratio of males to females has been reported most often as 3-4: 1
(Bryson and Smith, 1998).
1
At present, there are no cures for ASD, although a number of programs exist for the amelioration of
symptoms, for integration and for supportive care. As a medical condition, it falls into the sphere of
health services and similar agencies. As a disability, it falls into the spheres of education and social
services. Other aspects require attention from still other agencies. Autism spectrum disorders are not
unique in requiring this broad overlap of services and programs.
1.2 - Rationale
In Newfoundland and Labrador, very little is known about the age and sex distribution, location, and
range of severity of persons with autism spectrum disorders. Indeed, the overall prevalence rate for the
province is not yet determined.
Specific services for adults with autism spectrum disorders and their families in this province are
perceived to be limited. Little is known about the actual service needs and educational and training
requirements for such persons and their families.
The study reported here is intended to provide some answers to these questions. People with ASD are
among the most vulnerable and socially excluded members of our society. It is hoped that the results of
this project will enable the province to provide the optimum programs and services to meet the needs of
this vulnerable group in a cost effective and efficient manner.
1.3 - Objectives
Initially, the objective of this project was to develop a model of services and programming for all those
with ASD designed to achieve optimum health and well being for all ages from early childhood through
adulthood. However, given the recent intervention project for young children with autism in this
province, it was felt that the greater need at the present time was with adults with ASD. The focus of
this research was adults with ASD and the issues and gaps in services for them. For the empirical study
detailed in this report study, the definition of adults was deemed to include those 15 years and over.
However, in consultation with the provincial Department of Health and Community Services, it was
agreed that for an estimate of the prevalence of ASD in the adult population of the province only those
18 years and over would be included.
Our objectives towards developing a provincial model of services and programming for adults with
autism spectrum disorders were to:
• estimate the prevalence of adults with ASD in the province
• document current programs and services available for adults with autism spectrum disorders
• determine program and service needs of adults, families and organizations in the field of autism
treatment, training and support
• provide a comprehensive report on the findings and recommendations of this study to support
establishment of a province wide strategic plan for people with autism spectrum disorders
2
Chapter 2
Methods
Summary Points:
This chapter describes the methodology used to collect information on ASD in the province.
•
•
•
•
A telephone survey of parents/caregivers of adults (15 years plus) with ASD in Newfoundland &
Labrador was conducted. A supplementary survey of a limited number of adults with ASD was also
conducted.
Focus groups and key informant interviews were conducted with parents and professionals to
address concerns emerging from the telephone survey.
A literature/internet search was conducted to scan for available services for adults with autism both
within and outside the province.
An estimation of prevalence rates for adults, aged 18 years and over, was made based upon
information from the telephone survey and information from Advisory Committee members for
individuals not participating in the survey.
2.1 - Telephone Survey of Parents and Caregivers
A telephone survey of parents and caregivers was conducted to determine the issues and gaps in service
for adults with ASD and their families. The questionnaire was developed based on two sources:
instruments developed by The National Autistic Society (UK) titled “Survey on the Provision of Services
for Adults with Autism and Asperger Syndrome” and “Questionnaire on Adult Provision and the
Transition to Adult Life”; the Demographic and Diagnostic Information Form of the National
Epidemiological Database for the Study of Autism (NEDSA) based at Queens University in Kingston,
Ontario. These were edited and modified for local relevance and combined into one questionnaire
designed to be administered by telephone to parents and caregivers of adults with ASD. (See Appendix
A, ‘Form Q1’).
Names and telephone numbers of parents of adult children with ASD who consented to take part in the
survey were submitted to the researchers by members of the Advisory Committee, and through various
contacts made with community and government agencies, by professionals involved in the care and
treatment of adults with ASD (including the Autism Society, the Department of Education and the
Department of Health & Community Services), and through a local newspaper article. Following initial
contact, a telephone survey time was scheduled. On average the length of time to complete the
interview was forty-five minutes to one hour.
All surveys were coded, the data entered and analyzed using the relational database software program
EPI INFO version 6.04. Totals for questions may vary because for various reasons the parent or
caregiver did not answer some questions posed.
3
Those who were not willing or could not be interviewed were asked for the child’s date of birth so that
they could be included in the prevalence survey only (an estimate of the total number of adults with
ASD in the province).
The estimation of prevalence rates for adults, aged 18 years and over, was based upon information from
the telephone survey and information from Advisory Committee members for individuals not
participating in the survey where a date of birth was available (with permission when required,
N=134). All individuals had either a diagnosis of ASD or were considered by a professional (see
Appendix F for criteria applied) to have ASD. Statistics Canada 1996 census data was used for estimating
prevalence.
2.2 - Focus Groups and Key Informant Interviews
As the surveys were completed, parent and caregiver comments concerning the major issues and gaps in
services to adults with ASD were noted. Focus group and key informant interview questions were
designed to investigate ways to address these issues and gaps (See Appendix B, ‘Form FG-1’).
Participants in the parent/caregiver focus groups were chosen from the survey participants. They were
asked to attend a two-hour focus group to discuss solutions to some of the problems that were
documented in the survey questionnaire. There were four parent/caregiver focus groups: two in St
John’s, one in Grand Falls and one in Corner Brook.
A focus group was arranged with the Board of Directors of the Autism Society of Newfoundland and
Labrador. There was also a focus group conducted with Behaviour Management Specialists (BMS) of
Health and Community Services, St John’s Region.
Key informant interviews were completed with social workers, teachers, speech language pathologists,
occupational therapists, and professionals involved in the administration of community intervention
services. A representative for the Association for Community Living, a physician with experience in the
treatment of ASD, and behavioural management specialists were also interviewed.
Participants for the BMS focus group and key informant interviews were chosen based on their roles in
the treatment and care of adults with ASD and their geographical representation. All participants were
sent a copy of the questions in advance of the interviews or the focus groups to better enable a full
discussion of possible solutions to the issues. There were a total of 35 participants in the focus groups and
16 participants in the key informant interviews.
The focus groups and interviews were taped, transcribed, coded and analyzed using the qualitative
software program Ethnograph.
2.3 - Survey of Adults with ASD
The questionnaire administered to the adults with ASD was a modified version of the questionnaire
administered to the parents/care givers. Two versions of the questionnaire were designed - one for
those individuals still in school and one for those individuals no longer in school (See Appendix C, ‘Form
Q2').
4
Details of ten eligible adults were submitted by members of the Advisory Committee, of whom nine
completed the survey. However, it should be noted that by virtue of the fact that these individuals
could communicate well enough to participate in this survey, these nine may not be a representative
sample. Parents/care givers of those ten individuals were then contacted and asked if they felt their
son/daughter would be able to participate. If their son/daughter was able to participate, they were
given the option of completing the questionnaire over the phone, using pen/pencil, or via e-mail. The
nine completed questionnaires were then coded and the data entered into EPI INFO.
2.4 - Current Programs and Services
A literature search was undertaken to investigate programs and services that are available both within
Newfoundland and Labrador and outside the province. This involved a scan of both library and Internet
resources.
5
Chapter 3
Demographics and Diagnosis
Summary Points:
In this chapter, we provide some estimates on the prevalence and distribution of ASD in the province.
•
•
•
The prevalence of ASD in Newfoundland and Labrador among adults aged 18-19 years was
estimated at 14 per 10,000 population. The male to female ratio in adults was 2.2:1.
The age of initial diagnosis for the adults with ASD was between ages two to four years according
to reports by parents/caregivers.
Many parents commented on the difficulties and delays in obtaining a diagnosis for their child.
3.1 - Prevalence
The total number of adults (18 years and over) with ASD identified in this study was 134. The mean age
of the adults with ASD in our sample was 22 years with a range of 15 to 74 years. In the survey
population, there were 53 males and 24 females, a ratio of 2.2:1 (See Figure 1).
Figure
2 provides estimates of the prevalence of ASD in Newfoundland and Labrador based upon the individuals
identified. The prevalence estimate for adults with ASD between 18-34 years was 8.4 per 10,000
people based on the Statistics Canada Census 1996 population of this age range. Since diagnosis was
limited before 1980, prevalence estimates of the age groups 18-19 years and 20-24 years are likely to be
more accurate (i.e. 14.1 and 12.4 respectively).
7
According to figures provided by the Department of Education, Government of Newfoundland and
Labrador, there were 223 children with a diagnosis of ASD, in a total of student population of 86,898
during the 2000-2001 school year. This gives a prevalence of 1 per 370. This compares closely to
Saskatchewan statistics of 1 in 385 during the same period (Department of Education, Government of
Saskatchewan) and confirms our prediction that due to improvements in diagnosis in the younger age
groups, the greater the accuracy of the estimate. Based on the Statistics Canada Census 1996 population
(18-34 years), if projections are made as to the adult prevalence of ASD when the youngest of this
population grows to adulthood (i.e. age 18 years in the year 2014) this will mean an adult prevalence (in
the 18 to 34 year age group) of 27 per 10,000. This is almost three times as high as the prevalence we
obtained in the current 18-34 year old age group.
3.2 - Gender and Regional Distribution of Identified Cases
A total of 77 telephone surveys were completed with parents and caregivers of adult individuals with
ASD (15 years plus). Sixty-nine percent (69%) of the adults with ASD were male and 31% were
female. This is an overall 2.2:1 ratio of males to females, which is a considerably higher proportion of
females than is traditionally reported (3-4:1; Bryson and Smith, 1998). Figure 3 gives a breakdown of
survey participant’s adult children with ASD by region and gender. The St John’s region shows a ratio
of 4:1.
8
3.3 - Diagnosis
Data with respect to age of initial diagnosis is limited to the recall of the parents/caregivers (Figure 4).
Some respondents (especially siblings or caregivers of adults with ASD) did not know the age when the
initial diagnosis was made. In seven cases, no formal diagnosis had been made. Diagnosis was most
commonly made between the ages of 2 and 14 years. Most of those diagnosed at an early age (2-4 years)
were less than 24 years old at the time of our interview. Some individuals did not receive a diagnosis
until adolescence or early adulthood. This was the case with five adults who were diagnosed with
Asperger’s syndrome.
9
Initial diagnosis was based on the respondent’s recall (Figure 5). The most common initial diagnosis for
both genders was Autism (54/77; 70.1%). There were 7 (9.1%) who did not know the diagnosis or
there was no formal diagnosis.
*Other: Infantile Autism, Atypical PDD, Suspected PDD, etc.
In the telephone interviews, many parents and caregivers commented that it often took years to get a
diagnosis, e.g.:
... started bringing him to doctors at age 3. It wasn’t until (his) early teens he got diagnosis of
Autism. [parent]
... (around) 2 years old before we were told daughter was handicapped ... every year would spend
holidays and summers at the Janeway trying to get daughter diagnosed ... age 16, 17, when got
diagnosis of Autism. [parent]
These comments reflect the experiences of parents and caregivers attempting to obtain a diagnosis some
years ago and do not necessarily reflect the experiences of parents seeking a diagnosis today.
In the focus groups and the interviews, participants were asked to recall what they believed to be the
most useful service or program for the well being of adults with Autism. Several parents referred to
the Diagnostic Unit at the Faculty of Education, MUN, e.g.:
The Diagnosis Unit was fabulous ... our daughter, she loved it. She still speaks about X ... [parent]
Great pains were taken to get ... a good diagnosis ... doing a lot of tests ... trying to pinpoint the
specific weaknesses and specific abilities of my child. [parent]
This unit no longer exists. Diagnosis today is carried out at the Janeway Children’s Hospital where the
Development Group provides a province-wide service such that the difficulties of obtaining an early and
accurate diagnosis should not now occur.
10
Chapter 4
Education
Summary Points:
The survey and interviews with parents and caregivers identified a range of concerns about the
educational experience of adults with ASD.
•
•
•
Some parents or caregivers reported dissatisfaction with certain aspects of the education and
support received during the school years, including access to services, lack of awareness and
training for teachers and student assistants, and lack of flexibility in the hiring of student assistants.
Satisfaction centered around the individual efforts of particular teachers and school principals.
Only a minority of parents/caregivers had participated in planning for future support services and
transition beyond the school environment.
4.1 - Satisfaction with Education
A total of 29 of 77 individuals (37.7%) were still attending school at the time of the telephone
interview. Of the 48 who were not attending school, 15 had obtained a high school diploma, 20 had not
and 13 did not know if a diploma was awarded. At the time of the survey, more than three quarters of
participants (59/77; 76.6%) had been assessed as meeting the criteria for challenging needs as defined by
the Department of Education (See Appendix D).
Table 1 summarizes the participants’ answers to the question: “How satisfied are you/were you with the
education and support your son/daughter received/is receiving during his/her school?”
TABLE 1 - SATISFACTION WITH EDUCATION AND SUPPORT
n%
N = 77
Not at all
27
35.1%
Minimally
22
28.6%
Completely
12
15.6%
Satisfied in early years
7
9.1%
Satisfied in later years
6
7.8%
Don’t know
3
3.9%
TOTAL
77
100%
Category
11
Almost two thirds (61.1%) of parents/caregivers reported some degree of satisfaction with the
education system while one third (35.1%) reported that they were not at all satisfied with the education
system.
Parents were asked to rate their degree of satisfaction with the education and support that their child
had received throughout their schooling. Table 2 summarizes their responses.
TABLE 2 - PARENTS’ SATISFACTION WITH SUPPORT R ECEIVED
Received Support with ...
Agree
Don’t Know /
No Response
Disagree
Academic achievement
19.5%
(15)
33.8%
(26)
46.8%
(36)
Medical and emotional needs
37.7%
(29)
27.3%
(21)
35.1%
(27)
Structure for full life
23.4%
(18)
36.4%
(28)
40.3%
(31)
Support and resources for
challenging behavior
24.7%
(19)
33.8%
(26)
41.6%
(25)
Future housing
arrangements
3.9%
(3)
92.2%
(71)
3.9%
(3)
Community Strategies
26.0%
(20)
33.8%
(26)
40.3%
(31)
On the whole, parents were divided equally regarding their satisfaction with the support provided for
their child’s medical and emotional needs. However, there tended to be more dissatisfaction with the
support received in other areas, including academic achievement, structure for full life, and resources
for challenging behavior.
4.2 - Sources of Satisfaction
(a) Particular Individual Teachers:
Those most satisfied with their child’s school experience often reported that this was due to the
efforts of a particular teacher or principal or an outstanding student assistant, e.g.:
When first started there was nothing geared for (him). When he changed schools, it was much better
except for one teacher. Eventually, got a new special needs teacher who was amazing ... had buddy
system (where) regular kids would make sure he would get to class. The teacher organized this ...
[parent]
12
Satisfaction levels would often change between elementary to school years. For some, there was
improvement in higher grades, e.g.:
... fought for everything ... (but) once in grade 6 or 7, things started moving and level of education
was fantastic ... [parent]
But for others, it was the reverse, e.g.:
Earlier years were a lot better than now. High school just focuses on life skills. [parent]
(b) Useful Programs:
The parents and caregivers were asked to identify what they believed was the most useful program
or service for an individual with ASD. Journal writing, a tool used by some schools, was
mentioned by several parents as a very helpful device during the school years in that it informed
them of their child’s activities, e.g.:
... having a journal and the willingness on the part of the teachers to be a part of that – informing us
by virtual writing. Because the children do not talk ... they can’t tell you their experiences in school
... what he ate, what he did, the upsets and activities ... really good because it tells you when he
comes home in the evening ... well there’s the reason (he’s upset) ... [parent]
4.3 - Sources of Dissatisfaction
(a) Accessing Support Services:
Accessing support services within the school system was described by some as a struggle, e.g.:
... he can go to school all day, sit there and not disturb anybody. So they don’t want to give him
nobody (student assistant). He don’t get help because he’s not disruptive ... So you really got to fight
for his support. [parent]
(b) Lack of Training:
Some parents commented on the lack of training in autism for teaching/student assistants, e.g.:
... girls that are on social welfare have come ... and took (student) aide positions and it’s ridiculous
... I have been a nurse and it’s the most challenging job I’ve ever had. [parent]
Allocation and retention of student/teacher assistants was also a problem. Parents felt that the
bureaucratic and seniority rules took precedence over the needs of the individual with autism, e.g.:
... the bumping and you’re the next on the list ... seniority where unions are involved ... it’s not to
your child’s benefit. (We) went through half a dozen ... and here’s the youngster getting more
confused everyday ... [parent]
13
4.4 - Transition Planning
Thirteen out of 74 parents/caregivers reported that they had been approached by school personnel about
a plan for their child’s transition beyond the school environment. Seven of these had a formalized
meeting with school and professional representatives to discuss the future needs of their children. The
other six reported that a plan was brought up in conversation with a teacher or other educational
professional, but nothing further came of it.
The seven respondents who reported having these planning meetings were parents who took the
initiative to pursue the process. Most felt it was a beneficial process and focused on the positives.
However, even those who had regular, productive meetings reported that while plans were made, e.g.
employment through an employment agency, there were few supports and resources out in the
community to implement them. A typical comment was:
... we’re having trouble finding placement for our most high functioning individuals…so I don’t think
we will find anything for your son’ ... [parent quoting agency]
The Department of Education has recently implemented a more comprehensive transition plan for all
children with different types of disability (See Appendix E; Individual Support Service Plan). Those who
have participated made reference to the overall usefulness of the process, e.g.:
I think the whole ISSP process has been a boon because…if you get the team to put down the needs
and the goals – even the ones you can’t fill – then you got them down somewhere… the whole
process … has the potential to be very helpful. [parent]
14
Chapter 5
Current Living Arrangements and Daily
Activities
Summary Points:
The parents and caregivers provided details of the current living arrangements and daily activities of the
adults with ASD in their care.
•
•
•
Most adults with ASD identified were living at home with a family member. The extent of their
independence in daily living activities varied, with the most assistance required for meals and
shopping. Assistance in daily living activities was provided either by parents or through Health and
Community Services.
Reported daily activities of adults with ASD depended on several factors including the
independence and initiative of the individual, the availability, training and initiative of respite
workers, and the availability of recreational and employment opportunities in the community.
Appropriate recreational activities were considered to be unavailable or inadequate especially
outside the capital region.
5.1 - Current Living Arrangements
Most adults with ASD identified in the survey (75.3%) lived at home with a family member (Figure 6).
Other* - Alternative Family Care, Cooperative apartment, totally independent, residence
15
Most parents/caregivers reported that their adult children with ASD were happy with their living
arrangements. Ninety-five percent (73/77) of respondents agreed or agreed strongly with the
statement: “Is your son/daughter happy where they live?”.
5.2 - Daily Activities
Independence in everyday activities for adults with ASD varied according to the kind of activity. Table 3
shows that meal planning and shopping are activities that required the most assistance, whereas
housework and personal care required the least help. Most help with these activities reportedly came
from parents and family members. None of the respondents reported receiving volunteer aid. Health
and Community Services was the only additional source of assistance for necessary daily activities.
TABLE 3 - INDEPENDENCE IN D AILY ACTIVITIES
Help Needed
n / %
Who Provides Help?
n / %
Activities:
Indep.
A Little
Help
A Lot
of Help
Totally
Dep.
Parent/
Family
HCS*
HCS &
Family
No help
needed
Don’t
Know
Plan/prepare
meals
8
10.7%
19
25.3%
21
28%
27
36%
41
54.7%
11
14.7%
15
20%
8
10.7%
---
Shopping
11
14.7%
16
21.3%
14
22.7%
30
40%
37
49.3%
13
17.3%
13
17.3%
11
14.7%
1
1.3%
Housework
9
12%
25
33.3%
17
22.7%
24
32%
42
56%
12
16%
12
16%
9
12%
---
Personal
Care
21
28%
19
25.3%
16
21.3%
19
25.3%
30
40%
12
16%
12
16%
21
28%
-–
*HCS = Health and Community Services
5.3 - School
For those who attended school (29/77; 38%), a typical day had structure because the day revolves
around attending school, e.g.:
On a school day – up at 7:40 and leaves for school around 8:10…(driven by parents) because it is
more convenient and the bus ride is difficult for (child)… home for lunch most days…goes back to
school…gets home after school and does homework in bits and pieces…hard for him to focus ...
[parent]
But for those who did not attend school (62%; 48/77), and during the summer months, many parents
and caregivers reported that their adult children are usually at home without any structure to their day
(66%; 51/77), e.g.:
16
Up a noon ... Dad leaves him his lunch… He waits for Dad to call at 2:00 … stays home alone,
watches TV in the afternoon. Waits for Mom and Dad to get home. If it’s nice outside he will go for
a walk. Has supper and watches TV in the evening and plays computer games ... [parent]
5.4 - Restrictions on Activities
Typical daily activities for all ages in our adult sample depended upon a number of factors, including: the
independence and initiative of the individual; the health of the individual, the sensory and daily needs of
the individual, the availability of respite workers, the training of the respite worker in dealing with an
autistic adult, the initiative of the respite worker when the person is in their care, and the availability of
recreational and employment opportunities for the individual in the community. It was often mentioned
by the parent/caregiver that a strict routine or structure was important to the individual with ASD,
e.g.:
... up at 12:00, breakfast, looks at videos, showers and goes to work at (employer’s name)…shift
work anywhere from 6 to 12 hours… on days off spends time at (name of ) library surfing the Web ...
[parent]
The focus groups and interviews also addressed daily activities and recreation. Some parents were
concerned about inappropriate recreational activities for adults with ASD. In particular, the parents
referred to ‘mall therapy’:
... what sort of activities individuals are involved in because I find that it is not varied enough here.
It’s been a big issue that I’ve had. It’s nice to go to the mall if that’s what the individual likes but not
if it’s the choice of the respite worker. [professional]
Likes for day to stay the same ... (he) follows same routines ... gets angry and agitated when routine
is broken. That is why living on his own is not possible because breaking routine causes too much
trouble ... [parent]
Even where facilities and activities exist, there are difficulties because of costs and limited hours or
seasons of access, e.g.:
The thing that stands out for me with regard to recreation is: for people living in situations other that
their natural families, like ILAs* and AFCs*, we are able to provide program fees so that they are able
to do things like swimming etc. But for natural families we don’t do that. Even like mileage for
individuals that don’t live in natural families, we cover that but for natural families we don’t. For
families that don’t have a whole lot (of money) this can be a big deal.”(*See Appendix G, Glossary)
[professional]
I mean most activities are in the summer when you have concerts and things. The swimming pool for
example is closed for the winter … There isn’t a lot to do and what is available is not particularly
well organized ... [parent]
I saw a child ... in the mall ... he was obviously under medication ... and there were two workers
with him and they were sitting off on the side staring into space ... that’s his therapy. [parent]
In rural and isolated areas facilities for recreation and opportunities for daily activities can be limited,
e.g.:
17
... we have been successful in getting a youth club opened […] there’s not a thing in that area with
regards to recreation…I talked with a parent who has an ADHD kid… and the lack of recreation
services in the area is a concern for her too. [professional]
In this community, if you’re not sports minded there’s very little in terms of social things to do unless
you want to go to Tim Horton’s and drink coffee. [professional]
5.5 - Particular Activities
In the questionnaire, the parents/caregivers were asked if their son/daughter participated in particular
activities (Table 4). Their responses confirmed that most adults with ASD ‘helped out around the
house’ and/or were ‘at home without a structured day’. Some of the adults were involved in other
activities, including full- or part-time employment.
TABLE 4 - INVOLVEMENT IN SPECIFIC ACTIVITIES
Activity*
n
N = 77
Helping out around the house?
53
68.8%
At home without a structured day?
51
66.2%
In part-time employment?
10
13.0%
Involved in work within the community?
9
11.7%
Attending training?
8
10.4%
Undertaking work experience?
8
10.4%
In unpaid voluntary employment?
8
10.4%
In full-time employment?
8
10.4%
Attending day care services for adults with special needs?
2
2.6%
Attending day care services for adults with Autism/Asperger’s Syndrome?
1
1.3%
* Parents could indicate more than one activity.
5.6 - Hobbies and Interests
Answers to an open-ended question on the hobbies and interests of adults with ASD were divided into
two main categories of ‘outdoor’ and ‘indoor’ activities and further subdivided as ‘solitary’ and ‘group.’
The most frequently mentioned were ‘indoor solitary’ interests that ranged from spinning plates to
creative hobbies like model building. Probably the most reported hobby was listening to music, though
watching TV and electronic/computer games were also frequent. When reading was cited it was most
often associated with a specific interest only, e.g.:
18
... more interested in watching TV and reading stuff that interests him… (not) in reading novels and
school stuff ... [parent]
‘Outdoor solitary’ interests included walking, photography, ATV use, going for drives in the family car,
doing outside chores and solitary sports like shooting hoops, e.g.:
... likes to go into woods and get wood for stove…shovel snow off patio ... [parent]
‘Outdoor group’ interests mostly included swimming. ‘Indoor group’ interests included bowling,
swimming and dances.
The professionals interviewed noted some particular benefits of community recreational activities for
adults with ASD, e.g.:
... off the top of my head ... the most useful ... is being in the community and being involved in
different physical activities, different sports, activities that the individual enjoys the most ...
[professional]
19
Chapter 6
Communication, Socialization and
Behavioural Concerns
Summary Points:
The parents and caregivers detailed the specific communication and socialization difficulties experienced
by the adults with ASD under their care.
•
•
•
About one third of parents reported that the individuals with ASD could not communicate verbally.
Most parents had concerns about their child’s social interaction. Parents of male children were
more likely to have these concerns. Concerns and barriers to social interaction were categorized
as: lack of facilities, behavioural problems, the individual’s limitations, and society’s attitude.
Almost two thirds of respondents had behavioural concerns about their child. Behavioural problems
influence other areas such as normal home life, access to respite workers, alternative living
arrangements and community inclusion.
6.1 - Communication Concerns
(a) Verbal Communication
Almost one third (31.2%) of the parents/caregivers indicated that their adult child with ASD could
not communicate his/her needs verbally and a further quarter (26%) reported limited verbal
communication (see Figure 7).
Figure 7
Verbal Communication
35
30
25
20
15
10
5
0
Entirely
Somewhat
Ability to verbally communicate needs
21
Not at all
(b) Non-Verbal Communication:
Over one third (36.6%) of the parents indicated that their son/daughter used non-verbal
communication (Figure 8).
Of the various types of non-verbal communication used, sign language or gestures were listed as
the most common (92.9%; Table 5).
TABLE 5 - TYPE OF NON -VERBAL COMMUNICATION
n
N = 28
Sign language or gestures
26
92.9%
Bliss board
4
14.3%
Sounds
2
7.1%
Other
4
14.3%
Type
Almost half (45.5%) of the parents indicated that someone new would not understand their child’s
form of communication and that some interpretation would be necessary (Figure 9).
22
Table 6 shows parental ratings of their child’s ability to communicate needs, self abuse and inappropriate
behavior. Those who had most difficulty communicating were significantly more likely to self abuse
(9.9, p<0.05), and to behave inappropriately (7.1, p<0.05).
TABLE 6 - PARENTAL R ATINGS OF ABILITY TO COMMUNICATE
AND INAPPROPRIATE BEHAVIORS
Ability to
Communicate
N
Self-Abuse
Inappropriate
Behavior
Entirely
33
4 (12.1%)
9 (27.3%)
Somewhat
20
3 (15.0%)
8 (40.0%)
Not at all
24
11 (65.8%)
15 (62.5%)
6.2 - Communication Help
More than three quarters (76.6%) of those interviewed reported that their son/daughter had worked
with someone to help improve their communication skills (Table 7). Those parents with children under
18 years were more likely to report having someone help with communication skills.
Table 7 lists the most frequently mentioned professionals who helped in communication training. Most
often this help came from Speech Language Pathologists (74.6%). However, others reported to have
been involved included: Child Management Specialists, Teachers and Behavior Management Specialists.
TABLE 7 - PROVIDER OF COMMUNICATION HELP
Help Provided by:
n
(N = 59)
Speech Language Pathologist
44
74.6%
Child Management Specialist
13
22%
Teacher
8
13.6%
Behavioral Management Specialist
5
8.5%
The frequency of the sessions to improve communication skills was most often reported as once per
week (33.9%; Figure 10). However there were many respondents who could not remember or did not
know the frequency (44.1%).
23
Figure 10
Frequency of Communication Training Sessions
30
26
25
20
20
15
10
8
5
4
1
0
1 mth
2-3 mths
1 week
1 day
undetermined
The most often reported training session length was 60 minutes (Mean: 51 minutes; Minimum: 3
minutes; Maximum: 75 minutes) and the therapy was usually given for an average 3 years (Mean: 3
years; Minimum: 0.3 years; Maximum: 15 years). Approximately 45% of parents/caregivers found the
communication training their son/daughter received to be helpful (Figure 11).
Professionals in the focus groups and the individual interviews commented on the usefulness of
communication training with their clients with ASD, e.g.:
... in my experience, the most productive programs are the ones that I have developed… in
consultation with the speech language pathologist… I think they are very resourceful… help me
develop programs ... [professional]
24
6.3 - Socialization Concerns
The vast majority of parents interviewed had concerns about their child’s social interaction (84.4%;
Figure 12). Significantly, more parents of male children (91%) than parents of females (71%) expressed
concerns about social interaction (Fisher two-tailed p < .05).
Figure 12
Concerns for Social Interaction
70
65
60
50
40
30
20
12
10
0
Yes
No
There were significant differences in responses to the question: “Yes” to the question “Are there
concerns about your son’s/daughter’s social interaction?” between the parents/caregivers who lived in
the St. John’s area and those who lived outside the St John’s area. Parents living outside the St. John’s
area (45; 58%) were more likely to have concerns about their child’s social interaction compared with
those parents living in the capital city (32; 42%) (Fisher exact two-tailed p = .01). Comments from the
parent focus groups revealed that this was because most felt that there were more opportunities for
social interaction in the city.
More than half the parents rated their son’s/daughter’s ability to interact socially with other people as
low (53.2%; Figure 13).
Figure 13
Social Interaction Rating
50
41
40
30
24
20
12
10
0
High
Medium
Interaction Level
25
Low
6.4 - Specific Socialization Concerns
Concerns about social interaction were divided into four major categories: Lack of Facilities for
Socializing, Behaviour Problems, Limitations of Autistic Adult, and Society’s Attitudes. Table 8 shows
that parents were concerned, in particular, about the lack of facilities.
TABLE 8 - SOCIAL INTERACTION CONCERNS
Category
n
(N = 65)
Lack of facilities
28
43.1%
Behavior problems
27
41.5%
Limitations of adult
27
41.5%
Society’s attitude
5
7.7%
They were also concerned about specific ASD behaviors, e.g.:
... very trusting ... doesn’t see bad in anyone ... very naive. [parent]
... (she) likes babies and if, for example, she sees a baby in a car ... will approach car even if car is
moving. [parent]
Some parents referred specifically to a broader social attitude, e.g.:
He doesn’t get enough social interaction ... some people shy away from him ... seems to be a lack of
education from other people. [parent]
The majority of parents/caregivers did not feel that their concerns about social interaction had been
adequately addressed. Figure 14 shows that 44 out of 65 parents (67.7%) felt that their concerns had
only been addressed ‘a little’ or ‘not at all’.
Not at all
A little
Quite a bit
Completely
26
In the focus groups and interviews parents mentioned the benefits of the Vera Perlin Agency:
... there’s a summer program at the Vera Perlin … there’s a whole array of different disabilities…
and all kinds of people … different ages … They divide them into different age appropriate groups …
I find that to be a very, very good program ... [parent]
and the Prevocational Centre:
... what a lovely organization that was (Prevoc Centre)* … what a wonderful situation … to do the
teaching, what a wonderful social opportunity for these individuals…they seemed to quite enjoy it …
there’s something to be said for that type of workshop …” (*See Glossary Appendix G) [parent]
Inclusion in the community was mentioned by some professionals and parents as being an important
aspect of socialization, although sometimes this could be difficult for several reasons, e.g.:
... if you’re looking at recreation … like going to the gym … I’ve certainly found that there have
been barriers on the part of the owners or those who work there … didn’t understand behaviour … a
lot of resistance … but by taking the time and … answering their questions … after a period it
becomes a non-issue ... [professional]
6.5 - Behavioral Concerns
The majority of parents/caregivers had identified concerns about their child’s behavior (62.3%; Figure
15).
Figure 15
Percent of Parents with Concerns about Behavior
50
48
40
29
30
20
10
0
Yes
No
(a) Types of Behavior:
The types of problematic behavior were grouped into four categories: inappropriate behaviour
(e.g. undressing in public), aggressive behaviour (e.g. punching and lashing out), self abusive (e.g.
head banging) and self stimulation (e.g. finger flapping, rocking) behaviours. Table 9 shows that
over two-thirds of the parents referred to inappropriate behaviours, over half to aggressive
behaviours, approximately one-third to abusive behavior and one-fifth to self-stimulation.
27
TABLE 9 - TYPES OF BEHAVIOR CAUSING CONCERN
N=%
N = 48
Inappropriate
32
66.7%
Aggressive
27
56.3%
Abusive
18
37.5%
Self-Stimulation
9
18.8%
Behavior Category
(b) Effects of Behavioral Problems:
Focus groups and key informant interviews also mentioned that behavioral problems can negatively
influence other areas, such as: normal home life, access to respite workers, alternate living
arrangements, and community inclusion, e.g.:
... she’s very violent … there’s no flesh left on her fingers … every kind of meds that’s available …
she’s tried on this child … nothing is working … and there’s no facility … nowhere for her to go …”
[professional]
Alternate family care is hard to come by particularly with those with difficult behaviors ...
[professional]
... she used to slam her hands in the doors … we used to turn off the electricity in the house before
we go up to bed because … when she was little and turned on the burners and she stuck both her
two hands on the burners ... [parent]
(c) Useful Behavioral Programs:
Several references were made in the focus groups and key informants’ interviews to
services/programs that were useful to adults with ASD with behavioural problems. Applied
Behavioural Analysis was often mentioned as helpful, e.g.:
I would have to say in terms of seeing benefits and in terms of intensity … would be the program
called applied behavioural analysis ... [professional]
This was followed by the professionals who provided such programs, e.g.:
The BMS/CMS services are the best, more so than me (social worker) … these people are the ones
who coordinate their needs and call in SLP, OT and others ... [professional]
28
Chapter 7
Challenges for Adults with ASD
Summary Points:
This chapter summarizes the challenges the parents and caregivers felt that their adult child with ASD
experienced.
•
•
The challenges most frequently mentioned by the parents were quality of life, lack of services and
supports, and public attitudes and awareness of ASD.
The supports and services most frequently needed were Community Services (e.g. respite, BMS),
living and recreation options, employment, life skills (communication and social interaction),
awareness (more understanding of ASD by professionals and the general public), and information on
available services and supports.
7.1 - Challenges
Parents and caregivers were asked in the telephone survey what they believed were the biggest
challenges facing their son or daughter with ASD. Their replies were grouped into three main
categories: concerns about quality of life, the lack of services available, and the attitude and awareness of
society and the general public to autism. Table 10 shows that the most frequently mentioned concern
was ‘quality of life’ followed by ‘lack of services’.
TABLE 10 - CHALLENGES
n%
N = 77
Quality of life
51
66.2%
Lack of services available
41
53.2%
Attitude and awareness
8
10.4%
Unknown
3
28.6%
(a) Quality of Life:
The quality of life category included parents’ concerns around their child’s disability and their
potential to have a meaningful life. The parents mentioned the individual’s lack of communication
and socialization skills and their dependency as barriers to a good quality of life. They wanted their
child to grow and progress to their highest potential so that they could have a sense of
accomplishment and self esteem, e.g.:
Trying to get normal human contact on a regular basis ... Regular work with a situation that’s
meaningful ... [parent]
29
Socialization and communication ... lack of those skills are what’s going to limit his social interaction
and job opportunities. [parent]
(b) Lack of Services:
The lack of services category included parents’ concerns that there are few, if any, options available
to achieve a good quality of life for their child. The lack of options in many domains were
mentioned; respite support, recreation, the future once they leave school, living arrangements as
adults, and lack of options for employment, were thought to be barriers, e.g.:
... nothing for him to do ... no resources (like) community centre or job facility. (My) biggest
concerns (is that) he is able to be productive but there is no outlet for it. [parent/caregiver]
... trying to get home support workers ... problems with wages ... need more respect for support
workers ... need incentive. [parent]
(c) Public Attitude and Awareness:
Some participants mentioned concern about the general negative attitude and lack of awareness of
both the general public and professionals towards ASD, e.g.:
... our first experience at the hospital other than the Janeway ... we were accompanied … by two
burly security guards and the first response we got from the nurse (was) ‘haven’t you got him on
anything?’ [parent]
Society’s unacceptance … society as a whole doesn’t have much tolerance of individuals like (my)
son. [parent]
7.2 - Services and Supports
In the telephone survey the parents/caregivers were asked an open-ended question as to what
services/support they would like to have available for their son or daughter. Their answers were
grouped into five categories. Table 11 shows that over half of the parents referred to ‘community
services’ and ‘living and recreation support’.
TABLE 11 - SERVICES PARENTS WOULD
LIKE TO SEE BECOME AVAILABLE
n
(N = 77)
Community services
42
54.5%
Living and recreation
40
51.9%
Employment
22
28.6%
Life skills
9
11.7%
Awareness
8
10.4%
30
These support services were explored further in the focus groups and interviews. The broad range of
comments recorded reflect the spectrum of needs of those with ASD.
(a) Community Services:
Participants felt that there was a need for more community-based services. This included respite
care, BMS services, counselling services, a greater coordination of services, and a workable
transition plan to move from the educational setting to elsewhere, e.g.:
I would say we need more BMSs, or at least more properly trained BMSs… [parent]
Parents with ASD children need counselling services and they need someone who can advise them
(and help prevent parental burnout). [professional]
... there’s different routes that provide services for different ages ... when they’re young (it’s the
Janeway) ... as soon as they become school age then they drop them ... and the school system has to
look after him ... when you’re out of the school system ... you got to back and find someone else ...
they are not coordinated ... I think it would help in terms of services. [parent]
(b) Living and Recreation:
Participants suggest that living and recreational services include: living arrangements where adults
with ASD can interact with a variety of people (their peers and staff), options for activities when
they leave the school system (not necessarily employment), and more opportunities for leisure and
recreation, e.g.:
... the major problem that we find … we have basically 2½ month break during the summer and I
think there should be something that is arranged that they can go to … [parent/caregiver]
... an area for recreation … but … small community and there’s not services for individuals with
special needs… he regresses over summer time so what will happen when (school is completed)?”
[parent/caregiver]
(c) Employment:
Any form of employment for their children was considered an important goal by many parents,
e.g.:
... office job ... even part time ... might help give him more goals in life ... [parent]
... more supportive employment. I think the agencies we have now need to focus on people who
aren’t as high functioning ... [parent]
(d) Life-Skills:
The life-skills category included help with communication skills and social interaction, e.g.:
... someone to work with my son on practical things ... help with communication ... someone who
has understanding of (ASD) ... [parent].
31
... for example, if the individual needs more communication work and alternate communication
work … they should be able to continue getting that through high school, through age 20, through
age 30, etc as long as there’s documented progress. [parent]
(e) Public Awareness:
The awareness category included a desire for professionals as well as the general public to have a
greater understanding of ASD.
... more people available regarding expertise in Autism. There just weren’t people who recognized his
problem when he was younger … [parent[
... a community awareness program or campaign … [parent]
(f) Information:
When participants were asked to rate the ease with which they were able to obtain information on
available adult services, the majority (58%) replied that it was either ‘difficult’ or ‘very difficult’
(Figure 16) to get information.
... some kind of database where all services and programs and everything that can be obtained (is
available) [parent]
(g) Potential Services and Supports:
Parents/caregivers were presented with a list of potential services and asked if they might be
beneficial for their son/daughter with ASD. Table 12 shows that over 90% endorsed ‘advocacy’
and over 50% referred to ‘respite care’, ‘behavioural management’ and ‘drug monitoring’.
32
TABLE 12 -POTENTIAL BENEFICIAL SERVICES FOR ADULTS WITH ASD
n
(N = 77)
Advocacy
72
93.5%
Respite care
53
68.8%
Behavior management
44
57.1%
Monitoring of drugs
40
51.9%
Sex counseling
21
35.1%
Other
31
40.3%
In the parent focus groups, several services were mentioned as being particularly beneficial to their
children through the years. The former Diagnostic Unit at the Faculty of Education was highly
praised as a source of useful information and help for individuals with disabilities. Direct Home
Services was also mentioned as being very helpful, e.g.:
What I found helpful was the Diagnostic Unit ... it was such a Godsend to us ... [parent]
I find Direct Home Services good ... just the fact that there was someone coming and giving you
information and toilet training ... [parent]
When presented with a list of possible day-programs, most parents/caregivers chose ‘sheltered
workshops’, ‘pre-vocational/life skills’, and ‘supported employment’ (Table 13).
TABLE 13 -POTENTIAL DAY PROGRAMS
n
(N = 77)
Pre-vocational/life skills
59
76.6%
Supported employment
57
74.0%
Sheltered workshop
57
74.0%
Post-secondary education
31
40.3%
Competitive employment
29
37.7%
Other
18
23.4%
Although community inclusion was mentioned by some professionals and parents, especially with
regard to socialization, most parents would like the option of sheltered and supported environments
available for their adult children. Again, this reflects the need to consider the adult with ASD as an
individual with individual needs. That is, while inclusion may be ideal for some, it will not work
for all.
33
7.3 - Problems Accessing Services
Parents were asked an open-ended question about the barriers and constraints to accessing support and
services for their adult child with ASD. Their responses were grouped into several categories (Table
14). The most frequently mentioned constraint was ‘lack of resources’ which was mentioned by almost
3 out of 4 parents followed by ‘lack of knowledge’ and ‘inflexibility’.
TABLE 14 - BARRIERS AND CONSTRAINTS
n
(N = 77)
Lack of resources
57
74.0%
Lack of information
36
46.8%
Inflexibility
33
42.9%
Lack of understanding from professionals
7
9.1%
Attitude of professionals
6
7.8%
Advocacy
3
3.9%
Inadequate communication
1
1.3%
(a) Lack of Resources:
Parents felt that current resources (financial and facilities) were inadequate to deal with the
numbers of those with ASD in the province. Because of the perceived threat of cutbacks to
services, parents felt that they were put in the position of fighting and sometimes stretching the
truth to maintain even the services they had, e.g.:
... struggled with (obtaining) student assistants … same every year … you are never allowed to tell
what good you’re child does. It always has to be negative so that they can get these people in place
… [parent]
... (some) parents lie through their teeth saying that their kids are more affected by their autism than
they actually are because they know that’s the only way they will get any services … [professional]
It was felt that lack of resources had led to a crisis management situation which was difficult on the
professionals and parents as well as on the adults with ASD, e.g.:
The bottom line is you have to have to be at risk for family breakdown in order to get funding
approved which is a very hard environment to work in. We’ve had people wait listed for almost a
year now… and there’s no indication that it’s going to change … [parent]
They try to push the family to the max ... have their backs to the wall before they will provide a
service ... I know families that have been separate and divorced over such things ... [parent]
34
(b) Lack of Information about Services:
Lack of knowledge or information was also perceived to be a major barrier to accessing supports,
mainly because most parents reported that they are not informed of the services that are available
or who they must contact to get that information. Sometimes this was due to the perceived lack of
awareness by the professionals themselves and a lack of communication between departments, e.g.:
... families have to dig for information. It’s not readily accessible … there is a particular service but
it’s kind of a secret service … you can only access it if … you’re in this particular situation … a crisis
… [parent]
Professionals may be used to working with children and not so much with adults and so the referrals
are not being made … this is not only with parents but with social workers … and other
professionals in the community too. [professional]
(c) Inflexibility:
Parents felt that the government’s inflexible eligibility criteria for services, and the generic design
of programs/services without consideration for the person as an individual (e.g. their age, their
home circumstance, the severity of their condition, etc), had led to inadequate services for adults
with ASD, e.g.:
The criteria needs to be re-visited, definitely … the means testing as does not account for the unique
employment situations of a lot of families … in rural situations they may be employed 6 months out
of a year and for that 6 months would not be eligible and then they may have a period of 6 months
where they have partial income but would not be eligible under Special Child Welfare Allowance …
[professional]
... if the person is functioning at a ‘normal’ level, then BMS would not be involved because criteria
state that client must have ‘mental retardation’ (old wording but basically still the same). People
with ASD don’t always fall into that category … functioning very well intellectually but the social
delay and the behavior problems are huge … there is room to expand the criteria. [professional]
(d) Financial Means-Testing and Discrimination:
The means test for receiving financial support for services was considered to be degrading and
insulting by parents, and also by many professionals. There were some comments about a
perceived inconsistency in the application of the criteria. Professionals interviewed agreed that
there may be some inconsistency in applying the criteria and felt that some degree of flexibility is
necessary. Parents found it very frustrating that they are financially responsible for their adult
children. Only parents on very low incomes or social assistance could qualify for financial support.
The financial assessment procedure was felt to be very invasive, e.g.:
They pretty well want to know what colour your underwear is before you get anything … that’s
what it amounts to. [parent]
... a parent ... her income is not too high …but over the years she has managed to put away some
savings for her son and now, because of that she is told that she may lose her respite care… I think
it’s just good parenting to put away money like that … to say that you have to use that first just
doesn’t make sense … [professional]
... my husband and I had to separate in order to get the funding to take her to St. John’s ... [parent]
35
I mean you’ve got misery enough with a disabled person, whether it be autism or anything else, but
they’re just trying to see how much more miserable they can make it for the family ... [parent]
Many parents felt that they and their children with ASD had been discriminated against with
regards to some criteria for services and supports, e.g.:
... they don’t give means tests when (a person) has cancer or diabetes, even though you can have
abuse of the system by people who want to abuse it. [parent]
It’s discrimination … against that you’ve got a handicapped child that requires a service … [parent]
(e) Lack of Follow-Up into Adulthood:
Many parents felt there was a lack of health care follow-up once a person was no longer followed by
programming at the Janeway Child Health Centre. This was considered to be a result of the
fundamental belief at all levels of government and society that autism is a childhood disorder. It
was felt that as the child became an adult there was an abrupt decline in the level of care available,
yet the condition was still present and the issues of care still existed, e.g.:
They have this feeling that ASD is a childhood disease. They don’t understand that if you have ASD,
it’s for life. And there is a reluctance because of that to provide services for adults. [parent]
... in the adult world (there is) a completely different philosophy … in terms of social services and
community health … for example a child would have gotten a wheel chair every 2 years … because it
was expected that as a growing individual you would need one … (but you) would only get one every
ten years as an adult. The funding is completely different. [professional]
... once your child is out of the Janeway – that’s it. They disappear. [parent]
... once your kid is too old for the Janeway, you fall off a cliff. [professional]
7.4 - Rural Concerns
Parents in rural areas reported particular problems in finding and retaining services, e.g.:
... if you’re within the city, you have a reasonable chance of finding some little piece (service or
support) but if you’re not, forget it … if you’re nearly 15 miles outside … you can’t even find a
worker. [parent]
... in northern Newfoundland speech language pathologists has always been a real problem, even at
the school level. Our school board has been unsuccessful in obtaining an SLP for the last 5 or 6 years.
[professional]
36
7.5 - Future Considerations
When asked about possible future living arrangements (within the next five years) for their adult
children with ASD, 40% parents/caregivers replied that they would like an independent living situation
and 33% preferred to have them living at home with the family (Figure 17). (For definitions of these
categories see Glossary, Appendix G).
Figure 17
Possible Future Living Arrangements
35
31
30
25
25
20
15
10
9
7
5
5
0
independent living arrangement
living at home with your family
cooperative apartment
other*
don't know
* Other includes: alternative family care, totally independent, residential care.
When asked why they thought an independent living arrangement would be best, parents replied that
their child ‘needs his own space’, ‘enjoys independence’ or ‘needs independence’. For a stay at home
arrangement, many said the individual was content where they are, or that they didn’t like change or
that parents know their needs best. To support these living arrangements many participants thought
that there would need to be twenty-four hour care or at least a flexible arrangement designed around
the person’s individual needs.
In anticipation of living arrangements that addressed needs even further into the future (>10 years),
almost half of the parents and caregivers had a ‘wait and see’ attitude (Table 15).
TABLE 15 - FURTHER CHANGES NEEDED
n
(N = 77)
Wait and see
38
49.6%
No
27
35.1%
Yes
11
14.3%
Undecided
1
1.3%
37
7.6 - Reasons for Delaying Future Planning
Putting off planning for future living arrangements when parents may no longer be able to oversee the
care of their child could potentially lead to a crisis situation. This important issue was presented to focus
group participants and key informant interviewees for further reflection.
Many felt that having to deal with such an issue was just too much for parents who were already under
enormous stress, e.g.:
... (a) scary thought that your child is disabled and (then) having to accept that and work through
that … you have to deal with what’s going to happen with them when I’m gone. It’s tremendously
anxiety provoking and a lot of them don’t want to think about it. [professional]
... when people don’t see who could take care of their kid any better than they can or don’t have an
experience of the possibility then they just want to avoid thinking about it because all it’s going to do
is depress them. [parent]
Both the parents and the professionals acknowledged that there are very few options for alternative
living arrangements available right now and that this was one of the reasons that many were reluctant to
discuss it, e.g.:
... has still been going around in a circle and has no real opportunity for alternate care… maybe that’s
the reason why people don’t want to deal with it … I think people realize that the sad reality is that
there’s not a lot if alternatives out there and there’s probably not good prospects and they know
about abuse and neglect … maybe that’s part of the reason why they don’t want to consider it …
[parent]
... a lot of (parents) aren’t open to Alternative Family Care ... they’re afraid that when they are gone
the person is going to be passed from family to family. [professional]
38
Chapter 8
Parent/Caregiver Needs and Services
Summary Points:
Parents and caregivers were specifically asked to identify their own needs.
•
•
•
Community awareness/education for the general public and for professionals, and respite care were
highly rated as needed services for parents
Almost half had respite care and were generally satisfied with the service.
Reasons given for dissatisfaction with respite care include staff turnover, low wages, limited
number of hours, access/availability, and adequate training.
8.1 - Needs and Services
One in five parents reported that they had requested education/training in the support and management
of their son’s/daughter’s care (16/77; Figure 18). Eleven of these 16 parents and 13 of those who did
not request information reported that they undertook training on their own.
Parents/caregivers rated a list of possible services for themselves. Table 16 shows that community
awareness/education topped the list (96%). Other needed services mentioned by parents included
parent counselling and more parent support, an Autism resource centre, and emergency respite care.
39
TABLE 16 - POSSIBLE SERVICES FOR PARENTS
n%
N = 77
Community awareness/education
74
96.1%
Education/training
72
93.5%
Respite care
71
92.2%
Financial support
67
87.0%
Supported employment of child
66
85.7%
Day care
60
77.9%
Other
23
29.9%
Increasing community awareness was considered to be important because there was so little
understanding of ASD in the general public. Education and training was also favoured to address this lack
of understanding, particularly among the professionals (e.g. teachers, physicians) and others (e.g. respite
workers) with whom parents have to deal with on a regular basis. Financial support was also highly
favoured because many felt that the extra burden of raising a child with ASD was a financial strain on
families, especially when there were other children or an extended family to support. More programs
for supported employment and day care would address the quality of life issues both for the parents as
well as for the adult with ASD.
8.2 - Respite Care
Almost half (46.8%) of the parents/caregivers indicated that they had received respite care (Figure 19).
40
TABLE 17 - R ESPITE CARE BY R ESIDENCE
Residence
N
Had Respite Care?
St. John’s
20
11 (55%)
Outside St. John’s
16
3 (19%)
There was a significant difference in respite care use between those living inside and outside the St
John’s area. Table 17 shows that those who were living in the St John’s area were more likely to have
had respite care (Mantel-Haenszel chi square = 4.8; p < .05). One possible reason for this may be that
rural communities have a smaller pool from which to draw potential workers:
Some parents in smaller communities have said “Well, we’re in such a small community and my child
has severe behaviour extremes and we’re finding it hard to find anybody to work.” And that’s the
truth. So you get kind of stuck with people who are just purely, purely doing it because it’s a job and
are not necessarily doing a good job but the parents are so desperate that they’ll take anyone.
[professional]
Respite care was considered by some parents to be a benefit for the child as well as the parent. It was
considered a necessity to enable the parent to be a better caregiver:
I consider respite care funding that enables you to be a better caregiver … anything that decreases the
stress that allows you to deal better … especially in the long term … I can tell you right now that
your child usually benefits … [parent]
8.3 - Satisfaction with Respite Care
Of those who had received respite care, most (22/36; 61%) were satisfied with this service. The
reason for satisfaction most often mentioned was the personal initiative of the individual respite worker,
e.g.:
I think it’s a personal initiative, a lot of them. You know, I've had (non-trained) people that have
been phenomenal ... [professional]
From what I can tell at the moment, some respite workers themselves have quasi-created a program at
the Long Side Club and converge on that place with their individuals … These respite workers have
recognized that they need to be doing something with these individuals but they’re doing it entirely
on their own ... [professional]
Table 18 shows that the main reasons for dissatisfaction with respite care was the high turnover rate
among workers followed by poor wages and the insufficient number of hours/days.
41
TABLE 18 - REASONS FOR RESPITE CARE DISSATISFACTION
n
(N = 36)
High turnover
29
80.6%
Low wages
29
80.6%
Amount of coverage
29
80.6%
Availability/Access
27
75.0%
Training
26
72.2%
Turnover of workers was a concern because it was felt that wages are low and there is little incentive to
remain in the position. Parents cited training as a problem because respite workers are mostly
untrained with regard to autism and parents have to spend considerable time and energy in instruction,
only to have the worker leave after a short while. Another reason for dissatisfaction was that the hours
assigned were not considered to be adequate by parents and caregivers. The availability category refers
to parents’ comments regarding the difficulties of qualifying for this service under its present criteria.
Typical comments on the services included:
... and then a part of that has to do with the salaries … the hourly wage they are willing to pay … if
you get somebody good … it wasn’t hard for them to get higher pay…someplace else ... [parent]
I’ve been trying to get respite care for (child’s name) for forever but we make too much money … we
didn’t even make $25,000 last year but we make too much money ... [parent]
In addition to the above, some parents expressed concerns about the potential for abuse of their
vulnerable children when in the care of largely untrained and unsupervised respite workers, e.g.:
... our children ... who are non-verbal or have little means of communicating…the safety issue has
been perhaps the greatest concern that I have personally had to deal with … I believe my child was
abused but had no way to prove it ... [parent]
42
Chapter 9
Adults with ASD
Summary Points:
This chapter summarizes the results of a survey of a small number of adults with ASD. It is not a
representative sample.
•
•
•
•
Satisfaction with schooling, as reported by the individuals with ASD surveyed, depended on the
type of facilities and individual teachers.
Most of the individuals surveyed replied that they were able to perform daily activities such as
preparing simple snacks, taking care of their personal hygiene, etc., with little or no help.
All of the respondents occupied the majority of their time at home in such activities as listening to
music, watching TV, using the computer, etc.
A majority of the individuals surveyed indicated that they were interested in working outside the
home and/or furthering their education.
9.1 - Demographics
Nine male adults with ASD completed a short questionnaire about their education and daily living. Five
of the respondents were from the St. John’s Region. The average age for the respondents was 27.4
years, with a range of 17 to 29 years.
9.2 - Education
One individual was still attending school at the time of completing the questionnaire. Of the remaining
eight individuals who were no longer attending school, five had obtained a high school diploma. Five of
the respondents had attended a regular class at school.
When asked about what they liked and did not like about school, the respondents replied with a variety
of answers. The responses were grouped into the four categories: facilities, teachers, friendships and
courses. Table 19 shows that six indicated that they were satisfied with the school facilities and five with
teachers. However, fewer than half reported satisfaction with friendships and courses.
TABLE 19 - SCHOOL SATISFACTION
Category
n%
N=9
Facilities
6
66.7%
Teachers
5
55.6%
Friendships
4
44.4%
Courses
2
22.2%
43
Sources of school dissatisfaction were grouped into three categories. Table 20 shows that the most
frequently mentioned were the attitude of fellow students and the courses available.
TABLE 20 - SCHOOL DISSATISFACTION
n%
N=9
Attitude of Students
4
44.4%
Courses
4
44.4%
Attitude of teachers
3
33.3%
9.3 - Living Arrangements
Eight out of nine respondents were currently living with their parents. They were asked what they
liked and did not like about where they were living. Their answers were grouped into six categories.
Table 21 shows that they were most satisfied with their living location.
TABLE 21 - SATISFACTION WITH PRESENT LIVING ARRANGEMENTS
Categories
n
(N = 9)
Location
6
66.7%
Friends
2
22.2%
Economically viable
2
22.2%
Content living with family
1
11.1%
Facilities
1
11.1%
Staff
1
11.1%
The sources of dissatisfaction were grouped into four main categories. Table 22 shows that the greatest
source of dissatisfaction was the lack of facilities.
TABLE 22 - DISSATISFACTION WITH PRESENT LIVING ARRANGEMENTS
n
(N = 9)
Lack of facilities
3
33.3%
Age appropriate
1
11.1%
Attitude of community
1
11.1%
Location
1
11.1%
Nothing / don’t know
3
33.3%
44
9.4 - Daily Activities
Most of the respondents indicated that they were able to perform many of the “normal” daily activities,
i.e. cooking their own meals, making their own bed, cleaning their own room, vacuuming, bathing and
shaving themselves, and choosing their own clothes without help from a parent or care giver. Many of
the respondents, however, needed help with washing their clothes and buying new clothes.
When at home, all of the respondents occupied most of their time in such activities as listening to music,
watching TV, using the computer, etc. A few of the respondents (3) indicated that they enjoyed helping
out around the house.
When outside the home, most respondents indicated that they enjoyed visiting places (e.g. as stores,
cinemas) or participating in some form of physical activity (such as walking, riding the ski-doo, etc.).
None of the respondents indicated that they participated in any group activity such as bowling.
Eight of the nine respondents indicated that they were interested in having a job outside the home. The
most favored types of employment were electronics and white-collar (Table 23).
TABLE 23 - TYPE OF EMPLOYMENT
Categories
n%
N=8
Electronics (computers, TVs, stereos, etc.)
3
33.3%
White collar
3
22.2%
Self employed
2
22.2%
Blue collar
1
11.1%
Don’t know
1
11.1%
Finally, the respondents were asked whether or not they were interested in furthering their education.
A majority of the respondents indicated that they would like to get more education. The most popular
education preference was computer training (Table 24).
TABLE 24 - EDUCATION AND TRAINING PREFERENCES
Categories
n
(N = 6)
Computer training
3
50.0%
Business
1
16.7%
History
1
16.7%
Reading
1
16.7%
Travel
1
16.7%
45
Chapter 10
Solutions Suggested by Parents/Caregivers
Summary Points:
This chapter presents the suggested solutions put forward by parents and professionals to the various
concerns they had identified.
•
•
•
Participants felt that more information about potential options should be provided.
There was a need to further explore recreational opportunities.
Participants felt that services should be individualized and take into account long-term living
arrangements.
10.1 - Finding, Obtaining, Retaining Services
Over half the telephone respondents mentioned ‘lack of services’ as one of the major problems facing
their adult child, e.g.:
Well, there are no services to access. That’s the problem ... we have a wait list freeze on funding ...
so unless there’s a critical point ... [professional]
Focus group participants mentioned that parents should be made aware of any services available at
diagnosis, e.g.:
Well, I would hope at the point of diagnosis somebody would be able to say to you, look, you know,
you've got a diagnosis of autism for your child or autism spectrum - whatever you want to call it - to
say, these are the service you can investigate that would be helpful for you; and at the point of
diagnosis, why not, right? [parent]
There was a perception on the part of parents that service providers were reluctant to give out
information about services because of limited resources, e.g.:
We don’t get a brochure as the parent of an autistic child, which says here are the services that are
available to you. As a matter of fact, I’ve sometimes wondered if the opposite isn’t true - that the
services that’s available are kept as quiet as they possibly can until the crisis. [parent]
The difficulty of retaining services, whether it was a student assistant, a respite worker or the services
of a BMS was also believed to be a function of too few resources, e.g.:
Well, I know for our service, the minute we get our programs in place and the behavior decreased or
the interventions are done, we move on because we have a waiting list ... [professional]
(They) look at the fiscal issue ... versus the well-being of the child. [parent]
47
More financial resources were perceived by most as the major answer to the difficulties in finding and
retaining services, e.g. respite workers. Low wages and no benefits were barriers to obtaining good
quality and consistent caregivers. However, it was felt by some that sometimes putting money into the
issue was not always the answer but that more creative ways could be found to stretch what was
available. It was felt that flexibility should be built into the system to make it easier to transfer funds
from one area to another and to focus on the individual’s needs, e.g.:
You’ve got to go with what you can afford and I think that the first step is having the ability to put
money from one pocket into another. The service has to be individualized. [parent]
Many parents felt that there were no answers to this issue because it was a fiscal issue and government
policy tended towards thinking in terms of dollars and cents and not in terms of the individual, e.g.:
Everywhere you turn there’s another shut door because there are no solutions ... [parent]
10.2 - Appropriate Recreational Opportunities
The second issue was appropriate recreational opportunities for an adult with ASD. Solutions offered
emphasized the person with ASD as an individual, with individual preferences and that this must be
taken into account when developing programs. Also, the activity should be age and developmentally
appropriate. Developmentally appropriate programs were considered to be particularly important since
autism was a broad spectrum disorder and many have sensory issues that need to be considered.
Programs should address the particular needs and interest, e.g.:
... there’s no such a thing as generic recreational opportunities because everybody has different
interests ... [parent]
It’s no good to think you’re going to involve a 16 year old in activities that 6 year old’s like… they’re
interested in their own age group, no matter what you say ... [parent]
A rural/urban exchange opportunity was thought to be an option for some adults with ASD. In the same
way, those who have fewer activities in smaller communities might appreciate the options available in a
larger centre.
Therapeutic recreational opportunities were thought to be an appropriate way to design activities. For
example, an outing, such as taking a person to the mall if that is what they enjoy, could also be used to
learn how to ask for help with purchasing, learning to take turns, use of language etc.
There was discussion around designing programs with other disability groups. Some parents were open
to this and thought it could work in certain circumstances but others felt that it was not appropriate,
e.g.:
... a lot of time in their own age group … they know that don’t fit and I find they’re more
comfortable with … other learning disabled kids … Think about who you choose for friends yourself
… you stick around people who have similar interests and abilities … why should that be different
for special needs kids. [parent]
I would not want to see a place with just disabled individuals. There needs to be a community effort
so that (there is) a place in winter where you can go and play table tennis or have coffee and socialize
... [professional]
48
The issue of inclusion in the community vs. segregation came up as a barrier to designing appropriate
recreational programs. Although it was mostly professionals who were strongly in favour of designing
activities in the community, both parents and professionals involved in their care felt that there was
room for both, e.g.:
It’s either ‘be integrated or isolated, very isolated’ – trying to force a square into a circle … the
theory is good … and it needed to happen because historically they didn’t have a choice of being
integrated … but now we have to backtrack and get somewhere in the middle and recognize people’s
differences. [professional]
Prevocational centres or sheltered workshops were also regarded highly by both parents and professional
as good options. The success of the Vera Perlin model was thought to be due to their good programs and
staff with a low ratio of participants to staff.
The key to most of these suggestions was to have flexible options available that could accommodate the
individual needs of the person with ASD.
10.3 - Means-Testing
The third issue discussed was means-testing for allocation of funding from government sources.
Suggestions around this included banning means-testing completely or having a certain level of funding
for all families with disabled individuals, no matter what income or resources they might have, or
possibly to the individual themselves when they reach a certain age, e.g.:
I have always felt that … if you are diagnosed with a legitimate disability there should be some degree
of supports that are made available to you right away without have to go through this type of system
(means-testing). [parent]
Other suggested there needs to be a way of looking at the level of disability or the level of need of the
individual. This could be based on a medical professional assessment, e.g.:
... you can’t just do it on the parental means because ... some of the individuals needs are so high ...
you’ve got to have help ... There’s got to be a way to look at the level of needs of the individual.
[professional]
One social worker who regularly did means-testing with clients commented that even though she had
many years of experience, she was not an expert on autism and thought that it would be fairer if there
was a multidisciplinary approach to the assessment, e.g.:
... a team of people … the family is saying to me they require 40 hours of home support. Do you
agree with this? … and the team comes back and says ‘we think this is excessive’ or ‘we think this is
reasonable’ … that’s much fairer in my view. [professional]
Another suggestion to make means-testing a fairer process was to only use it as one instrument by a
team doing an overall assessment. Other factors must also be taken into account, like the age of the
child:
... the level of the need as determined by the team around the person ought to be another part of the
picture … once you get into adolescence the needs are greater for a normal child, let alone for a
developmentally disabled child. So things a parent could handle with a child under 10 they might not
49
be able to handle with an older child … you have to weigh the pieces … you’re got to have more
than one piece ... [professional]
10.4 - Lack of ASD Awareness
The fourth concern that was discussed with participants of focus groups and key informant interviews was
a lack of understanding and awareness of ASD for both the general public and with professionals. Raising
awareness with professionals employed within the provincial government who are involved with the
care and treatment of individuals with ASD was seen as the responsibility of the government, e.g.:
I think it needs to come from the top, from the government – to educate … their own employees ...
[parent]
Professional training should provide more extended opportunities for trainees to understand what it is
like to have a child or an adult child with ASD:
... the professional people have to come and … get on the other side of the desk … come into the
homes while they’re training. They really have to come and see and feel it and then they’d have a
totally different attitude. [parent]
With a lot of their training, I find they may actually do a little about various disabilities and stuff but
they will probably concentrate on the clinical. Nobody talks about the dynamics of what happens ...
with Autism on families. [parent]
In the school setting it was thought necessary to educate teachers and students on an on-going basis, e.g.:
... for teachers and student assistants I think … it should be mandatory to do … workshops and
conferences and seminars … to keep abreast ... [parent]
... I think it has to start really early ... to read to children and talk about children with disabilities ...
[parent]
For the general public, suggestions were made about multimedia campaigns, as well as educational
workshops and forums, e.g.:
... doing a series of information sessions that would include multimedia … such as flyers, pamphlets,
putting a flyer in the paper with a caption ‘Do you know what Autism Spectrum Disorder is?’ It
could be available in doctor’s offices … schools, community centres … radio ads to just increase
awareness ... [parent]
(a TV show) from a parent’s perspective … a parent of a pre-schooler, or school aged or adult …
here’s our experiences … this is what autism means to us, to our son/daughter, to our family … (to
show) it’s such a range from high functioning, very independent, to the other end … who need
significant supports … showcasing the difficulties in just going to a movie or cooking supper ...
[parent]
50
10.5 - Management Approach
The fifth concern that was discussed was the kind of approach that would be appropriate or beneficial for
managing the needs of individual adults with ASD. When planning appropriate solutions to an
individual’s needs, a panel or group format was thought to be the most beneficial. Some felt that this
could be modelled on the provincial government’s ISSP format. This would have a multidisciplinary
approach with parents, the individual (where applicable), teachers, school guidance counsellor, speech
language pathologist, and/or other professionals and community members that are deemed appropriate.
The drawbacks of this system were perceived to be: the lack of any one person (e.g. a caseworker) that
would coordinate each case on a consistent and regular basis; disregard for parents’ experience and
advice; and termination of the ISSP process when the child left the school system.
Others were more open to a less formal approach, a ‘circle of friends’ model, with a parent as
‘caseworker.’ The group would consist of family, friends and community people and would draw
professionals into the circle when they felt there was a need. This would give the parent a strong voice
in the care of their child with ASD, but would not leave them with all the decision-making. Again,
flexibility was key to the success of whichever model was chosen because, for instance, in some cases the
parent might feel overwhelmed by the many details of the planning and future care of their child and in
these cases another arrangement for coordination of needs would have to be arranged. Ultimately,
however, whatever model is chosen, resources have to be provided to maintain it adequately, e.g.:
... we feel that a team approach even as an adult ... there’s still programming required ... it’s an
extension of what you tried to do at the school ... you move it up a level as an adult ... you always
need some kind of team approach to managing your child ... [parent]
A team approach is better because if you have just a BMS … would be concentrating on the
individual’s behaviour, a social worker would be concentrating on just working with the family.
People have their own jobs to do. You need a collaborative effort ... [professional]
It has to be a kind of flexible system ... sometimes to put everything on a case worker ... because even
though they may get to know him over the years ... you still have to have a fair amount of input from
the parents because the parents ultimately understand the kid better than anybody ... [professional]
... if the government is going to commit to make any commitments around some new process
(Multiplan) they had better be willing to hire numerous other workers because who is going to take
this big piece of work? Most are out there now totally overworked ... [parent]
10.6 - Future Living Arrangements
The last specific concern that was discussed was how to address the issue of planning for future living
arrangements. This issue was chosen for focus groups and key informant discussion because there were
many parents/caregivers who participated in our telephone interview who had not done any planning for
where their adult child would live when parents could no longer provide care. Most felt that options
were limited and this was, at least in part, the reason that most did not want to consider alternative
plans for their child. Difficulties around solutions to this problem were considered to be government’s
(and some community agencies’) inflexible policies with regard to living situations for adults with
disabilities. Such policies as complete community inclusion for persons with disabilities, and inflexible
regulations around the available options were often seen as barriers to solutions. Many parents felt that
51
a group living situation should be an option, which should come under the auspices of a central service
agency (e.g. a Centre run by the Autism Society).
I mean, this might not be what somebody else would choose but for my child, I would like to see him
in a well-run group home with say, probably 3 other individuals. [parent]
This group home suggestion is something that is not popular with government’s line on community
inclusion and what I have been taught since school. But now I have come to the conclusion that
sometimes there is a place for group homes. The province has gone too far … putting people into
other people’s homes in an effort to have them part of another family. But in reality they do not
become part of another’s family. In real life you have to know that these people are taking these
individuals into their home and getting paid for it. They’re doing it for a business. [professional]
I think community living, home living is best for the individual. I’m really convinced that these things
have to be tried first … (but) there is room for group homes for difficult to place individuals … I
cannot really disagree with parents who say that there is a need for group homes … I mean, who am I
and who are we as a society to dictate to a family what to do with the individual child with Autism
… I never want to see it go back to the days of the Waterford and Exxon House experience, but
smaller, four or five maximum ... [professional]
... a Centre that would basically provide different arrangements ... a room ... an apartment or what
ever ... [parent]
10.7 - Transition to Future Living Arrangements
Planning for future living arrangements was considered to be an important part of the transition from
childhood to adulthood. It was felt that parents need training and counselling and the help of
professionals, e.g.:
... we’re just starting to do programs at the pediatric level/adolescent care level about how to live on
your own and what to expect in the change of independence. Parents need that education too
because of lot of it is letting go … learning workshops for parents, learning workshops for children ...
[professional]
... there has to be something to start while the parents are still around and they can supervise ... and
make sure that it works ... [parent]
Once again, parents and professionals felt that a full range of options for future living arrangements was
necessary because ultimately one is dealing with an individual with personal and individual needs and
what might be suitable for one person might not be suitable for another.
52
Chapter 11
Current Programs and Services Available
to Children and Adults with ASD
Summary Points:
This chapter reviews the current services/programs available for adults with ASD in the province.
•
•
•
•
There are no community agencies and/or government departments that offer supports and
programs specifically designed to meet the needs of adults with ASD.
There are services specifically designed for preschool and school–age children with ASD offered by
the Autism Society, Department of Education, and the Department of Health and Community
Services, and school boards. In recent years, there has been a relatively rapid development of
services for children with ASD in the Province.
Most services presently available in the province for children and adults with special needs
(including persons with ASD) are generic programs and supports for persons with disabilities.
These are provided by provincial government departments and a number of community groups and
volunteer organizations.
In other areas of North America a number of residential, vocational, and employment programs
that have been developed and implemented for persons with ASD.
11.1 - Specific Programs and Services for ASD Available Locally &
Provincially
Most programs for adults with ASD are developed by regional or local organizations and agencies. Some
programs are designed to provide only residential or respite care to persons with ASD while others are
more encompassing, addressing educational, vocational, employment and living supports for persons
with ASD. Although the ideal would be that all persons with ASD would be fully integrated in work
and community, in reality the level of integration and support must be determined on an individual
basis. Some persons with ASD will be fully integrated into community while those with severe needs
and disabilities will require ongoing support.
Programs and supports for adults with ASD may include job placement and transition assistance, job
training, training for independent travel, and assistance and training for the use of community resources,
and residential settings. The variety of educational, vocational and employment, and residential options
reflect the range of abilities and challenges of persons with ASD and their individual and community
characteristics (e.g, cities, small towns, urban, rural). In areas with relatively few people and/or few
resources, collaboration and cooperation among those providing service to all those with special needs
has shown to be essential for the establishment and continuation of good supports and programs.
53
(a) Support Groups*:
The Autism Society of Newfoundland and Labrador provides leadership in assisting the provincial
government and the community in accepting their responsibility to provide individuals with ASD
and their families the services and resources needed.
The Society focuses on providing support to persons and families affected by ASD through the
development of programs and services within their communities. The Society is actively involved
in fundraising projects, public awareness activities, providing information to families, working in
partnership with families and other service providers to ensure services meet individual needs.
The Society encourages the development of a strong provincial society with chapters and parent
groups throughout the province. It promotes research into all aspects of autism spectrum disorders
and is creating a province-wide information and resource network in order to facilitate
communication and service delivery on behalf of persons with autism spectrum disorders.
The Society offers parent support groups, summer and after school programs for children and
adolescents with ASD. Most of these programs are offered in the St. John’s area with only few
supports available beyond the Avalon Peninsula. Society members receive a newsletter twice per
year updating current happenings and activities.
FEAT (Families for Early Autism Treatment) is a non-profit organization of parents and
professionals, designed to help families with children who have received the diagnosis of Autism or
Pervasive Developmental Disorder (PDD-NOS). They offer support and a place where families
can meet each other and discuss issues surrounding autism and treatment options.
*details extracted from websites.
(b) Department of Education:
The Department of Education has three ASD consultants for the approximately 250 students with
ASD in schools throughout the province. The consultants provide professional development and
consultation regarding ASD to all school districts in the province.
Students with ASD may also qualify for service via Criteria “G” (see Appendix D) for students with
a health/neurological related disorder. ASD is one of three disorders for which students might
avail of Criteria “G”, the other two including: Traumatic Brain Injury and Fetal Alcohol Syndrome
Disorder. The number of consultants are limited, making it unlikely that all students in need can
avail of this support.
11.2 - General Supports for Students with Special Needs (including those
with ASD)
Students with ASD also qualify for services of a non-categorical special education teacher. Theoretically,
such service is available to all students with an identified exceptionality; however, since the service is
provided to schools at a ratio of seven teachers per 1000 students it is unlikely that all students who
might need such a service would in fact receive it.
54
•
•
•
•
Students with ASD and a moderate/global severe mental handicap would also qualify for a special
education teacher via Criteria “C” ASD (see Appendix H).
Students with ASD may receive the services of a speech-language pathologist.
Students with ASD may receive the services of a student assistant, if they meet the criteria for this
service.
Students with ASD may receive service from an educational psychologist or from a guidance
counsellor.
Each school district has program specialists for student support services. Their role is to ensure that
appropriate programming is being delivered for all students with special needs, including those with
ASD.
Students with ASD should have an ISSP based on the Model for Coordination of Service to children and
youth. School services would be utilized to address the educational component of the ISSP.
11.3 - Department of Health & Community Services (DHCS) and Regional
Health Boards*
(a) Services for Pre-School Children with ASD:
Intensive early intervention services are provided to 30 newly diagnosed and referred preschool
children per year. Preschool children diagnosed with autism are eligible for up to 30 hr/wk of
home therapy for a maximum of two years and up to 15 hrs/wk during their kindergarten year
(outside of school hours) to assist with the transition to school.
Should more than 30 children be referred per year, a review is in place to determine if funding can
be provided. In both 2001-02 and 2002-03 there were more than 30 children referred, and all
referred and eligible preschool children received funding for treatment. As well, significant
funding has been allocated to address regional capacity building (e.g. training of Senior Therapists,
resources for staff, etc.) to ensure that trained regional staff are available to develop and oversee
home therapy programming for children.
(b) Support Services:
The DHCS and the six regional health boards provide a wide range of programs and services for
individuals and families throughout the Province.
• Individual Support Services Plan (ISSP): Each person with identified special needs has an
individualized plan (ISSP); a plan that involves the family and all those involved in providing
support and services. It is based on a coordination of services model under which many
professionals from different departments may have access to the plan and may have responsibility
for providing information on the development of objectives to meet the identified goals. Ideally
this should provide for a more consistent service in all environments and assist with transitions
from one setting to another.
55
• Child Youth and Family Services: The Child, Youth and Family Services program provides a
variety of services to children, young people and their families through Child and Family
Services, and Youth and Family Services. The Child and Family Services program focuses on
promoting the safety, well-being and protection of children and supporting the capacity of
families and our communities to provide for the health and well being of children. The core
services offered by this program include services in the areas of child abuse and neglect,
caregivers (Foster parents), family supports, adoption, promotion of healthy child development
and parenting. The focus of the Youth and family Services program is to ensure that young
people have the support and interventions they require to make the healthy transition from
adolescence to adulthood. The core services offered through this program include residential
and income support services for young people (16-18) who are not able to remain with their
families and counseling and therapeutic services for young people and their families who are
encountering a variety of social and psychological challenges.
• Community Living and Supportive Services: Community Living and Supportive Services offer
assistance to individuals of all age groups with either physical or developmental disabilities, or
both, and those affected by de-institutionalization. As well, the program responds to the needs
of individuals requiring acute health care and support services and access to long-term care
placement. The program and service areas include residential services (e.g., alternate family
care program, group homes, community residential living arrangements, transition houses),
support (e.g., financial, home support and transportation services, behavioural intervention
services, long-term care), and regulatory services.
• Disability Services: Disability Related Programs and Services are delivered by the six regional
Health Community Services/Integrated Boards. The program/services are available throughout
the province, however, their availability may vary from region to region. Services include the
Special Child Welfare Allowance Program, Direct Home Services Program, Community
Behavioural Services, Social Work Services, Community Living and Supportive Services for
Adults with Disabilities (e.g., alternative family care homes, co-operative apartments, home
support services, and special needs board and lodging supplement).
• Special Child Welfare Allowance Program: This allowance enables provision of financial
assistance to families with a child (under the age of eighteen years) who has a disability. This
assistance is designed to enable families to purchase items and/or services that are necessary due
to the child’s disability. The amount of entitlement for each family is determined by a financial
needs’ test.
• Direct Home Services Program: This program is a home-based early childhood intervention
service available to families with children, age-birth to school-entrance, at risk or having
developmental delay. The primary aim of the service is to assist families, identify and obtain
information/support to promote the holistic well-being of their children. Referral to the
program can be made by any interested party as long as family members agree to such action.
The service is voluntary and at no cost to the family and is available through the Regional Health
& Community Services and Integrated Boards throughout the province.
• Community Behavioral Services: This program is a community-based behavioral support
program which serves persons (school-aged and older) with diagnosed developmental disabilities
and accompanying intellectual impairment, who have been identified as exhibiting behaviors
56
which impede community integration and threaten residential, education, and vocational
placements. In two regions, the service is offered in a limited way to other children under the
Child, Youth and Family Services Act. The service is based on the idea that offering the right
behavioral support to people will improved the quality of life and guarantee that they are
included in the community. The service is voluntary and at no cost to the family. The service
may be provided in the home, schools, work settings or other places where people need support
to display appropriate behaviors. This service is provided by the Regional Health & Community
Services and Integrated Boards throughout the province.
• Social Work Services: Social workers are available within each region to provide counseling,
assist with the development of service plans and service co-ordination, complete individualized
assessments, issue funding when approved, and review and monitor programs and services
delivered.
* Adapted from the Department of Health and Community Services’ website
11.4 - Human Resources and Employment (HRE)*
The Employability Assistance for People with Disabilities (EAPD) Agreement is designed to assist
individuals with a disability to acquire the skills, experience and support necessary to successfully
prepare for, obtain, or remain in the workforce. Active programs in employment counseling and
assessment, employment planning, pre-employment training, post-secondary education, skills training,
technical aids and other supports assist individuals in accessing job opportunities and training. This
program is cost shared with Human Resources Development Canada.
Current programs funded under EAPD which are delivered by the Department of Human Resources and
Employment include: Training Services, Supported Employment, and Grants to Community Partners.
Training Services includes the provision of supports and services to allow individuals to develop and
implement a vocational plan and obtain post-secondary training. Supported Employment provides the
opportunity for individuals to be provided with the support necessary to allow them to successfully
participate in employment in community settings. Grants to Community Partners provides funding to
community agencies to deliver services which assist individuals to prepare for, obtain, or maintain
employment. Among the agencies funded by the department are the work-oriented rehabilitation
centres (training-related work opportunities prior to employment in the community). There are two
such centres: one in Lewisporte and the other in St. John’s.
* Modified from information provided on the HRE website.
11.5 - Community Agencies Offering Supports and Services to Persons with
Special Needs
There are many community agencies which assist persons with disabilities, including those with ASD.
As is the case for many services, there are more supports and services for persons with disabilities in
larger urban centres than in rural areas of the Province. The following list, while not exhaustive,
represents the main generic supports available.
57
•
Association for Community Living: The Newfoundland and Labrador Association for Community
Living provides advocacy assistance for persons with disabilities. Their goal is to work with and on
behalf of citizens with developmental disabilities and their families to secure the means and
opportunities whereby these citizens can lead normal and dignified lives as full participants in the
community. Chapters are located throughout the province.
•
The Vera Perlin Society: This society offers a number of programs as part of its mandate to foster
the development and happiness of individuals with mental handicaps.
•
Longside Club: This club helps to promote independence, participation and community integration
for people with all types of disability, with special emphasis in the performing arts.
•
Rainbow Riders: Rainbow Riders offers a horseback riding program for persons with disabilities.
Runs year-round, but services are reduced in winter.
•
Newfoundland & Labrador Special Olympics: This organization provides sport, fitness and
recreation programs for individuals with mental disabilities.
•
Best Buddies Canada (St. John’s): This is a non-profit organization committed to creating
awareness and changing attitudes about developmental disabilities. By creating friendships between
individuals in our community and adults with developmental disabilities, Best Buddies Canada
provides an opportunity for participants to enrich their lives, while encouraging tolerance and
diversity in Canadian society.
•
The Hub: The Hub aims to provide services that will allow the physically disabled adult to be an
independent participating member of the community.
11.6 - National and International Programs
Probably the best known North American program for persons with ASD is TEACH (Treatment and
Education of Autistic and related Communication Handicapped Children), a university-based statewide
(North Carolina) program that provides services, research and training on behalf of autism and related
developmental disorders. TEACH has been well researched over the more than three decades of its
existence and its success has been documented. Well- trained teachers, parent support and education,
transition planning and supports, vocational and academic preparation, supported employment, and living
options have been shown to be some of the necessary supports for persons with ASD.
TEACH recognizes that a wide range of options reflecting a continuum of services model is needed to
meet the living and learning needs of those with ASD. TEACH programs encompass preschool
education, parent education, school-aged services and educational programs, vocational preparation,
vocational placement and job services, residential, and respite care. Services are provided across the life
span from infancy
through adulthood.
TEACH’s model of integrated multi-disciplinary supportive employment programs has provided
direction for numerous other programs which have been developed in recent years to assist persons with
58
ASD. TEACH programs reflect the full spectrum of employment options ranging from workshop to
competitive employment. The choice of placement and level of support is based on each individual’s
strengths and characteristics. Whatever the model and level of support needed, a multi-disciplinary
approach is deemed to be essential to providing the continual personal, health, social, and vocational
services necessary for each person with ASD to lead as independent a life as possible. The team
membership includes professionals who have been trained in providing job-related support to the
individual with ASD and to employers.
Autism Services of America is a private non profit organization offering a wide range of options that are
tailored to meet the individual needs of persons with ASD.
The National Autism Society offers educational, employment and residential services in Great Britain.
Like TEACH and Autism Services of America, the Society supports a continuum of service provision
with the aim of integration to the maximum extent possible.
59
Chapter 12
Recommendations
Based upon the information collected in the research study, it is evident that much needs to be done to
address the various needs of adults with ASD in this province. In addition, it is evident that their parents
and caregivers experience substantial distress. While young children with ASD qualify for some specific
and coordinated support and services through the province’s education and the health care systems,
adults with ASD have access to limited resources. This leaves parents and caregivers with responsibility
for all aspects of their adult child’s continuing care, compounding their distress and often leading to
frustration, desperation and exhaustion. There is an urgent need to address this situation.
While evidence is emerging on effective programs and services for children with ASD (early
intervention programming), the effectiveness of similar programs for adults is not as clear. However,
given the present situation for adults with ASD and their families, we feel that certain recommendations
can be made. From the information we have gathered it is apparent that a unitary model of services and
programming for adults with autism spectrum disorders is inappropriate. Rather, the model must
recognize a process that will identify and respond to the individual needs of members of a diverse
population.
In view of the increasing number of individuals being diagnosed with ASD, it is important that:
a) agencies and professionals are made aware of the revised estimates of prevalence;
b) research and planning is extended to monitor and review developments in training and program
delivery;
c) policies and plans are developed to address the needs of adults with ASD and their families;
d) services are developed to meet the particular needs of adults with ASD.
The following recommendations are designed to build upon the existing support that is currently
available for individuals with ASD. The orientation is towards improving support for adults with ASD
who have tended to be neglected in program planning and service delivery. It should be noted that
because of the range of development among children and adolescents with ASD, some of these
recommendations would also apply to them. Also, because of the variability of expression of ASD, the
recommendations should be viewed and operationalized depending upon the needs and strengths of
individuals and their families.
Finally, it should be noted that the parents and caregivers of individuals with ASD are particularly
knowledgeable about the condition and are keen to participate in the development and implementation
of policies and programs. They should have the opportunity to be actively involved in all stages of the
process.
61
(1) Research and Training
1.1 Research
The current report contains the first extensive study of the prevalence and needs of adults with
ASD in the province of Newfoundland and Labrador. It provides a start to understanding the
particular challenges faced by adults with ASD and their families. However, there is a need to
extend and continue this program of research. Specifically:
• More Research: An ongoing program of research should be encouraged to monitor the
prevalence of autism and related disabilities in the province and the needs of those individuals
and their families. Researchers and students at Memorial University should be made aware of
the funding opportunities provided by the government (e.g. Canadian Institutes of Health
Research) and voluntary agencies (e.g. Autism Society) for research into all aspects of ASD.
The Faculties of Medicine and Education and the Schools of Social Work and Nursing should be
encouraged to invite such agencies to meet with researchers and students to discuss funding
possibilities. Researchers should be encouraged to collaborate with other provincial and national
research projects.
• Program Evaluation: Programs for adults with ASD should be developed based upon current
research knowledge and be subject to ongoing evaluation. The development of programs to
improve the quality of life of adults with ASD and their families is still at an early stage. Claims
to success for particular interventions offered in settings outside the province need to be treated
with caution. The design of new programs in this province should address its particular social,
economic, cultural and geographic context.
• Advisory Committee: An independent specialist advisory committee should be established to
conduct an ongoing review of new initiatives in the development of services for adults with ASD
and to develop proposals for specific interventions/programs and research projects. Such a
committee should include representation from the community, parents/caregivers of individuals
with ASD, direct service providers, government and academic professionals/university
researchers.
1.2 Training
Both parents and professionals expressed a desire for improvements in the level of training provided
to the various professionals who work with adults with ASD. There is a need to improve the level
of knowledge about, awareness of appropriate interventions and skill in providing support and
interventions among relevant professionals and support workers.
• Educational Professionals: Guidance counsellors, educational psychologists, and special needs
teachers should have training in assessment methods, needs identification, instructional
strategies and career planning for individuals with ASD. The Faculty of Education at Memorial
University should be encouraged to include this training in both the undergraduate special
education and the graduate psychology and counselling programs. School districts should be
encouraged to identify and meet the specific needs of their professional staff through a variety of
in-service training programs.
62
• Educational Support Workers: Steps should be taken to improve the training and quality of
service provided by student assistants. This could be achieved by enabling their participation inservice programs offered by the government and school districts (e.g. during district-wide closeouts). School districts should be encouraged to match the individual strengths of support
workers to the particular needs of individuals with ASD. They should also consider how to
reduce the negative impact of staff turnover on some individuals with ASD.
• Social Service Professionals: Social and community workers, recreation therapists and
employment counsellors should have training in employment and recreational opportunities for
adults with ASD. The Schools of Social Work and of Human Kinetics & Recreation at Memorial
University should be encouraged to include specific training on how their graduates can provide
services to adults with ASD and their families.
• Respite Workers: Training of respite workers in the management of adults with ASD should
be developed. This could be achieved through the provision of in-service training by health and
community service professionals.
• Health Professionals: Physicians, nurses, speech language pathologists and clinical
psychologists should have training in the diagnosis and management of adults with ASD. In
particular, those training programs at Memorial University whose graduates are most likely to
work with adults with ASD should be encouraged to develop dedicated portions of their
curriculum (e.g. psychiatry and pediatrics residency training programs).
• Teamwork: Training to provide services to adults with ASD should include preparation to
work as a member of an inter-professional team. At the earliest stages of professional training
students should have the opportunity to work with colleagues from other professional training
programs to grasp the need for teamwork. Continuing education programs in managing adults
with ASD should be offered jointly by several training programs (e.g. pediatrics and education).
(2) Policy and Programs
2.1 Service and Accessibility
Although there are ongoing advancements in the development of services for adults with ASD, it is
essential that the provision of those evidenced-based services is governed by the principles of equity
and flexibility to ensure that all individuals with ASD have access to the most appropriate services
and support.
• Equitable Access: All individuals with ASD should have equitable access to specialist
resources irrespective of their place of residence in the province. Funding should be made
available to help with transportation to regional hospitals and community centres or to tertiary
care services in the province. Level of parental income should not be a factor in accessing
evidence-based services for adults with ASD.
• Models of Delivery: There needs to be flexibility in the continuum of services and models of
service delivery (inclusion/exclusion) to meet the needs of adults with ASD. All services and
program planning should be premised upon addressing the particular strengths and needs of
individuals with ASD.
63
• Information: Access to relevant information on services and support for adults with ASD
should be improved (e.g. through the development of a dedicated searchable webpage). The
provision of such information could be included as part of the ISSP process.
• Specialist Training: Ways to increase access for adults with ASD to professionals who have
training in augmentative communication and behaviour management should be explored. This
may require increased resources in regional centres for individuals with this expertise or the
development of links with centres in other areas via Memorial University’s Telemedicine
Centre or training sessions to broaden/enhance the knowledge base of individuals in their
employment.
2.2 Home and Respite Support
The families of adults with ASD have been frequently ignored. Developments in service provision
should consider support for families a priority.
• Home Support: Ways to provide greater home support (i.e. personal care attendants) to
adults with ASD should be investigated. These individuals will need training to provide support
extending from the home to the community. These supports should be made available to
families irrespective of parental income.
• Respite Provision: Alternative forms of respite provision for parents/caregivers should be
explored (e.g. private homes and group homes). Consideration should be given to the problems
of obtaining respite care within all regions of the province but especially in rural areas where
current provision is particularly lacking. These facilities should be subject to ongoing monitoring
to ensure the maintenance of a safe and healthy environment.
• Daytime Programming: Consideration of alternative forms of day placement needs to be
considered for those adults who are not employed. A model for consideration is where some of
the respite time can be used to cover the day when the parents/caregivers are at work and
several individuals with ASD and their worker could join together for activities and social
interaction.
2.3 Community Resources
Due to the broad range of ability levels of adults with ASD there needs to be a spectrum of services
and supports available in the community.
• Recreational Activities: Dedicated recreational activities for adults with ASD that are
accessible and address the particular needs and interests of those individuals should be developed.
This could involve the provision of transport to particular centres to attend specific events.
These activities should be developed in collaboration with autism support groups. Opportunities
should be explored to develop shared recreational activities for adults with ASD, especially in
districts with low population density.
• Employment Opportunities: Community-based competitive and supportive employment
opportunities for adults with ASD need to be developed. Models that have been developed and
successfully implemented by others (e.g. TEACH) provide for the range of options needed for
64
persons with ASD and seem to be particularly useful for meeting the challenges of providing
employment for persons with ASD in rural and remote communities. In addition to HRE, the
Education departments responsible for kindergarten to grade 12 and post-secondary systems
should be expected to play key roles in this development. It would be essential to include the
knowledge and experience of the Department of Education’s autism consultants, who are
presently responsible for transition and career planning in the schools.
(3) Service Provision and Support
The services and supports contemplated in this model will need to exist on a continuum so as to be
able to respond to the diverse needs and circumstances of adults with ASD in the province. In
every circumstance development must be based upon the assessment of the strengths and needs of
the individuals requiring services. The implementation of the various recommendations will
require close collaboration between individuals, families and caregivers and the Departments of
Health & Community Services, Education, and Human Resources & Employment.
3.1 Individuals with ASD
• Individualized Programming: The ISSP should be adopted as a planning process for the
lifelong support of individuals with ASD including consideration of needs in education,
employment and recreation as well as the future challenges for those with limited or no parental
support. It should be noted that the ISSP is a relatively new model and it should be subject to
ongoing monitoring to improve its efficiency.
• Coordination of Health Services: In view of the recognized range of co-morbidities among
adults with ASD there is a need to closely monitor the various health needs of these adults. This
can be achieved through encouraging the development of multi-disciplinary teams mandated to
provide for the biopsychosocial needs of adults with ASD. The proposed primary health care
teams should deliberately consider how they can best meet the needs of adults with ASD.
• Living Arrangements: A variety of living arrangements from full supportive environments to
independent living should be available for adults with ASD based upon their individual strengths
and needs. All relevant agencies (e.g. Newfoundland and Labrador Housing Corporation,
municipalities, health & community service boards, and government departments) should be
encouraged to explore innovations in the provision of housing.
3.2 Families and Caregivers
• Families: Policy makers and professionals need to recognize the particular stresses experienced
by families of individuals with ASD. While addressing the needs of individuals with ASD may
alleviate some of these stresses there remains a need to provide psychosocial support to parents
and caregivers.
• Accountability: Efforts must be made to enhance the accountability in the provision of
services for adults with ASD though greater engagement with parents/caregivers in the
planning and implementation of services.
65
• Support Groups: Autism groups and societies should be supported in their efforts to provide
education, training, advocacy, and to establish self-help groups. This should be done in
collaboration with health, education and social service professionals.
3.3 Public Agencies
• Public Awareness: Autism groups and societies should be supported in their efforts to
increase public awareness of the concerns of adults with ASD (e.g. through media, school and
workplace awareness campaigns).
66
References
Bryson, S.E. (1991). Our Most Vulnerable Citizens: Report of the Adult Task Force, 1991. The
Autism Society of Ontario.
Bryson, S.E. & Smith, I.M. (1998). Epidemiology of Autism: Prevalence, Associated Characteristics,
and Implications for Research and Service Delivery. Mental Retardation and Developmental
Disabilities, Research Reviews, 4: 97-103.
Gilberg, C. (1997). Autism is More Common than Once Widely Held. Paper presented at the Autism
Workshop of the U.S. Centres for Disease Control and Prevention and the National Alliance for Autism
Research, Atlanta, GA, November, 1997.
Lotter, V. (1966). Epidemiology of Autistic Conditions in Young Children. Social Psychiatry, 1: 124137.
Wing, L. & Gould, J. (1979). Severe Impairments of Social Interaction and Associated Adnormalities in
Children: Epidemiology and Classification. Journal of Autism and Developmental Disorders, 9(1), 1129.
Wing, L. & Potter, D. (2002). Notes on the Prevalence of Autistic Spectrum Disorders. Retrieved
from the National Autism Society website http://w02-0211.web.dircon.net/pubs/archive/prevalence.html.
67
Appendix A
Form Q-1
Appendix A
Form Q-1
**Have Form S3 prepared prior to commencing with questionnaire**
Code NF00
Form Q1
Section A - General Background
1.
When was your son/daughter born?
___________
mm/dd/yyyy
I’m going to ask some questions regarding the diagnosis your son/daughter received.
2.
What age was your son/daughter when he/she was first diagnosed?
Up to 2 years
2-5 years (pre-school)
5-11 years (primary)
11-16 years (secondary)
16-19 years (post-secondary)
20-30 years
30+
3.
Please fill out the table for the initial diagnosis made for your son/daughter:
Type of Professional
who made the initial
diagnosis
Do you recall the type
of diagnostic tool(s)
used to make the initial
diagnosis?
G Pediatrician
G General
Practitioner/Family
Doctor
G Neurologist
G Child Psychiatrist
G Genetic Counsellor
G Other, please specify:
_____________
G Yes
G No
G Unknown
G
G
G
G
G
Type of test(s) used
to make the initial
diagnosis
ADOS-G
ADI-R
CARS
DSM4
Other, please
specify:
_______________
3a. Has there been a most recent diagnosis?
G Yes
G No (if no, skip to question 4)
Specific ASD initial
diagnosis
G Autistic Disorder
G Asperger’s Disorder
G Rett’s Disorder
G Childhood Disintegrative
Disorder
G Pervasive Developmental
Disorder, not otherwise
specified
G Infantile Autism
G Childhood Onset
Pervasive Developmental
Disorder
G Atypical Pervasive
Developmental Disorder
G Suspected Pervasive
Developmental Disorder
Date of initial
diagnosis
__/__/____
(DD/MM/YYYY )
(Please enter
year only if
month and date
unknown)
G
Unknown
If yes, I’m going to ask questions very similar to the ones I just asked you.
Type of Professional
who made the most
recent diagnosis
G Pediatrician
G General
Practitioner/Family
Doctor
G Neurologist
G Child Psychiatrist
G Genetic Counsellor
G Other, please specify:
_______________
G Unknown
Do you recall the type
of diagnostic tool(s)
used to make the most
recent diagnosis?
G Yes
G No
Type of test(s) used to
make the initial
diagnosis
G ADOS-G
G ADI-R
G CARS
G DSM4
G Other, please specify:
______________
Specific ASD initial
diagnosis
G Autistic Disorder
G Asperger’s Disorder
G Rett’s Disorder
G Childhood Disintegrative
Disorder
G Pervasive Developmental
Disorder, not otherwise
specified
G Infantile Autism
G Childhood Onset Pervasive
Developmental Disorder
G Atypical Pervasive
Developmental Disorder
G Suspected Pervasive
Developmental Disorder
Date of most
recent
diagnosis
__/__/____
(DD/MM/YYYY)
(Please enter year
only if month and
date unknown)
G Unknown
Section B - Education
I have some questions about education that I would like to ask you. Now, I recognize that some
questions will be difficult to answer and that it may offend some people. However, the information will
be useful to us, so please answer it if you can.
4.
Is your son/daughter currently in school?
G Yes (If yes, go to 5a only)
G No (If no, go to 5b & 5c)
4a.
4b.
4c.
5.
If yes, what grade is he/she currently in?
If no, what was the highest level of education your child received?
If no, what was his/her age when they left school?
Was your child assessed as meeting the criteria for challenging needs or special education?
*Remember to change tense of sentence according to how they answer question 5*
G Yes
G No (If no, skip to number 6)
5a.
If yes, was your child in a challenging needs classroom?
G Yes (go to 5c & 5d)
G No (go to 5b & 5c)
If no ...
5b.
5c.
Why not?
Was it determined in any way that he/she needed any extra help?
If yes ...
5d.
5e.
6.
Was there any support during regular class time?
G Yes
G No(If no, skip to number 7)
6a.
7.
For which grades was he/she in the challenging needs classroom?
Was the challenging needs part-time or full-time?
If yes, what type of support was there?
How satisfied are you/were you with the education and support your son/daughter received/is
receiving during his/her school?
Section C - Transition (Note - what’s in non-bold italics is for
prompting only)
8.
Has anyone spoken to you about a transition plan (transition plan meaning a plan about what your
son/daughter is going to do after he/she leaves school)?
G Yes
G No
8a.
8b.
9.
If no, go to question 10 & then skip to Section D.
If yes, what age was he/she when the first transition planning meeting took place?
Can you describe for me the transition planning process.
±
(prompt) Were you as parents involved in the transition planning process?
±
(prompt) Who was involved in the transition planning process?
±
±
±
±
±
±
±
±
±
±
±
±
±
±
Doctor?
Employment Agency?
Guidance Counsellor?
Parent Support Group?
Psychologist?
School Principal
Social Worker?
Son/Daughter?
Special Education Specialist?
Speech Therapist?
Teacher?
Local Support Group?
Please specify:
Other?
Please specify:
(prompt) Were your families’ views and preferences taken into account in the transition
planning process?
± (prompt if son/daughter was part of planning process): Were your son/daughter’s suggestions
accepted?
± (prompt) Do you feel that your son/daughter understood the transition planning process?
± (prompt) Was the necessary information transferred from the school to where your
son/daughter continued with his/her education?
10. OK, now I realize that some of the points in following question may have already been addressed
and answered, but this time I’m going to be asking for a more specific and detailed answer. What
I’m going to do is to read a series of statements and I would like you to rate them on a scale from 1
to 5, where 1 means strongly agree and 5 means strongly disagree.
1
The academic achievement of my son/daughter and potential
opportunities for adulthood with respect to college courses, vocational
training, work/employment, leisure and recreation were fully taken
into account.
The medical and emotional needs of my son/daughter were fully taken
into account.
The structure needed by my son/daughter to live a full life was taken
account.
The support and resources needed to meet the level of challenging
behaviour displayed by my son/daughter was fully taken into account.
The sort of housing (independent/sheltered/secure etc.) and the type
of people most appropriate for my son/daughter to share a home with
in the future were fully taken into account.
Strategies to enable my son/daughter to be able to play an active part in
the community were fully taken into account.
2
3
4
5
11. Did you have any expectations for the Transition Planning Process?
G Yes
G No
11a.
If yes, were those expectations met?
12. How would you improve upon the transition planning process?
13. Is there a transition plan now in place?
G Yes
G No
13a.
Do you have a signed copy of the transition plan?
G Yes
G No
13b. Has the plan been implemented?
G Yes
G No
13c. If no, why not?
14. Had the Transition Plan been updated since then?
G Yes
GNo
15. What do/did you think of the plan? Has the plan been beneficial?
±
(prompt) To what extent have the service needs identified in the plan been met?
±
(prompt) To what extent has the education/training needs identified in the plan been met?
16. What services/support received by your son/daughter through the ‘transition period’ proved to be
the most helpful?
Section D - Current Living Situation
17. Where does your son/daughter currently live?
G Independently
G Living at home with you/other family members
G Residential setting
G Alternate family care
G Board & lodging
G Co-operative apartment
G Other:
18. Is your son/daughter happy with where they live? (Only ask if older)
G Agree strongly
G Agree
G Neither agree nor disagree
G Disagree
G Disagree strongly
19. This next question has to do with how independent your son/daughter is. For each activity I read
out, I would like you to tell if your son/daughter needs help with the activity and then, if help is
needed, who provides the help.
If living at home...
Help needed?
Daily Activities
Totally
independent
A little
help
A lot of
help
Planning and
preparing of a meal
Shopping
Housework
Personal care
Any additional activity you would like to mention?
Who provides this help now?
Totally
dependent
Help
provided by
voluntary
services
Help
provided by
parents/
family
Help
provided by
Health &
Community
Services
If living on own...
Help needed?
Totally
independent
A little
help
A lot of
help
Who provides this help now?
Totally
dependent
Help provided by
voluntary services
Help provided
by parents/
family
Daily Activities
Help provided
by Health &
Community
Services
Planning and
preparation of a meal
Housework
Paying bills
Managing money
Shopping
Household repairs
Laundry
Dealing with letters
Personal care
Any additional activity you would like to mention?:
20. Please describe a typical day for your son/daughter?
20a.
How would you rate your son/daughter’s ability to do regular daily activities?
in comparison to non-autistic people
High
Medium
Low
20b. Ok, now continuing on with your son/daughter’s daily activities, I’m going to
ask you about some specific activities that your son/daughter may or may not
be involved in. For each one I read out, please tell me if your son/daughter is
involved in that activity.
Attending day care services for adults with special needs
G Yes
G No
Please elaborate:
Attending day care services for adults with Autism and/or Asperger Syndrome
G Yes
G No
Please elaborate:
In full-time employment (ask only if out of school)
G Yes
G No
Please elaborate:
In part-time employment
G Yes
G No
Please elaborate:
In unpaid/voluntary employment
G Yes
G No
Please elaborate:
Undertaking work experience (ask only if out of school)
G Yes
G No
Please elaborate:
Attending training (ask only if out of school)
G Yes
G No
Please elaborate:
Involved in work within the community.
G Yes
G No
Please elaborate:
Helping out around the house
G Yes
G No
Please elaborate:
At home but without a structured day
G Yes
G No
Please elaborate:
21. What hobbies/interests does your son/daughter have?
22. Is your son/daughter able to communicate his/her needs verbally?
G Entirely (skip to 22b?)
G Somewhat
G Not at all
22a.
Does your son/daughter use non verbal communication?
G Yes
G No
What type (i.e. Sign language, bliss board, etc.)?:
22b. Would someone “new” be able to understand your son/daughter’s form of communication?
23. Has your son/daughter ever worked with someone to help improve his/her communication ability?
G Yes
G No
±
(prompt) Who was it?
± School
± Teacher?
± Special Education Specialist?
± Social Worker?
± Psychologist?
± Speech Therapist?
± Other?
Please specify:
±
(prompt) How frequent were the sessions?
±
(prompt) How long did each session last?
±
(prompt) For how long was therapy given?
±
(prompt) Did you find it helpful?
24. Are there any concerns that you have about your son/daughter’s social interaction?
G Yes
G No
Please elaborate:
24a.
Have these concerns been addressed?
G Yes
G No
Please elaborate:
24b. How would you rate your son/daughter’s ability to interact socially with other people?
in comparison to other people
High
Medium
Low
25. Are there any behavioural concerns?
G Yes
G No
25a.
If yes, what are they?
±
(prompt) Is there a presence of more than one behaviour?
±
(prompt) If there are behavioural concerns, which is the most prominent?
26. What are the biggest issues/barriers facing your son/daughter at the moment?
27. In your view, what services/support would you like to see become available to your son/daughter
that are currently not available?
28. How easy has it been to get information on adult services?
G Very easy
G Easy
G Neither easy nor difficult
G Difficult
G Very difficult
Please elaborate:
Section E - Future Considerations
29. What living arrangement do you think would best benefit your son/daughter in the foreseeable
future? (Approximately less than 5 years time)
G Independently
G Living at home with you/other family members
G Residential setting
G Alternate family care
G Board & lodging
G Co-operative apartment
G Other:
29a.
Why do you feel this is best?:
30. What would they/you need to support this living arrangement?
31. Do you anticipate any further changes in this living arrangement? (Approximately 10 years time or
more)
G Yes
G No
Please comments:
32. For the next question, I’m going to provide a list of some services that may be of benefit to your
son/daughter. For each one I read out, I would like you to tell me if you feel it would be of benefit
to your son/daughter.
G Sex counselling
G Advocacy services
G Monitoring of drugs
G Respite care
G Behaviour management
G Other
33. Again, for this next question, I’m going to read a list but instead of it being services, the list will be
concerning day programs that may be of benefit to your son/daughter. For each one I read out, I
would like you to tell me if you feel it would be of benefit to your son/daughter. Feel free to
suggest additional programs.
G Sheltered workshop (i.e. a place for those with disabilities to go to socialize, rec, etc).
G Pre-vocational/life skills
G Supported employment
G Competitive employment
G Post-secondary education
G Other:
SECTION F: The next set of questions are directed to you, the
parents/caregivers.
34. Is respite care currently in place?
G Yes
G No
Please explain:
34a.
Were you/are you satisfied with the respite care?
G Yes
G No
Please explain:
34b. How did you come get respite care - was it offered or did you request it?
Please explain:
35. In terms of your own skills, have you ever requested education/training in the support and
management of your son/daughter’s care?
G Yes
G No
Please explain:
36. What services do you think should be available for parents of children with ASD?
G Respite care
G Day Care
G Education/training
G Community awareness/education
G Financial support
G Supportive employment of child
G Other:
37. What do you see as the barriers and constraints to accessing support/services for your
son/daughter?
Thank-you for participating. We really appreciate you taking the time out of your day to
complete the survey.
Appendix B
Form FG-1
Appendix B
Form FG-1
Parent/Caregiver Focus Group
Introduction: Over the past few months the Health Research Unit, in conjunction with the Autism
Society of Newfoundland and Labrador, has conducted a telephone survey of parents and caregivers of
persons with ASD as to the needs and service gaps to those 16 years and older. In this focus group we
would like concentrate on addressing and identifying solutions to the many needs and issues that
were identified by parents and caregivers.
1.
Through the years in raising your son/daughter with ASD, what has been the most useful service
or program for your child's well-being? (Prompt: What services or programs had the most positive
influence in their lives?) (Ask each person to contribute to this question as an ice-breaker?)
2.
Our telephone survey indicates that most individuals with ASD are living at home with their
parents. When parents/caregivers were asked what the future living arrangements might be like
when aging or ill parents can no longer care for their child, most replied that they would cross that
bridge when they came to it. How else do you think this issue could be dealt with? Can you make
any suggestions as to how parents can be helped if they want to make changes in future living
arrangements?
3.
What sort of approach do you think would be most appropriate or beneficial for managing or
seeking solutions to your son/daughter’s needs and problems? (Prompt if necessary: a multidisciplinary assessment meeting approach? Who do you think should be involved? A smaller group?
A one-on-one approach? What are the pros and cons of these approaches? Too many people
involved? Too intimidating for most parents?)
4.
One of the major frustrations that parents have faced is the fact that money can, and often is, made
available by government to other people to take care of their children, full and part time, while the
parents themselves do not qualify for even a portion of the same monetary support. As a
consequence parents may be forced to give up their child's care to others at a much greater cost to
government. What do you feel can be done to change this? What kind of system do you envision
would give more flexible options to parents and caregivers?
5.
How could home support/respite care worker services be improved?
6.
Can you suggest how BMSs (behavioural management specialists) might improve their services or
their approach to the needs of people with Autism?
7.
How could recreational services be improved in the rural setting? In the urban setting?
8.
What would you consider appropriate recreational opportunities for your son or daughter?
(Prompt: For instance, is going to the Mall twice a week with the respite worker, a common
activity in the St John’s area, considered appropriate recreation?)
9.
How would you like to see the general public made more aware of Autism Spectrum Disorder?
10. How would you like to see the medical profession made more aware of Autism Spectrum Disorder?
11. How do you think the process of applying to government for help and support services for your
son/daughter can be made less rigid and more individualized to the person in need?
12. Do you have any other issues/concerns that you feel have not been addressed here? (Prompt:
nutritional concerns? Specific medical concerns?)
13. Do you have any other suggestions or solutions that might be of help for people with ASD and their
families? (Prompt: maybe you have heard of a promising program or service in another province or
in the US?)
Appendix C
Form Q-2
Appendix C
Form Q-2
Code:
NF00
Section A - General Background
1.
When were you born? ________ (mm/dd/yyyy)
Section B - Education
Questions on School and Transition from School
2.
Are you currently in school?
G Yes
What grade/level are you currently
in?
G No
What was the highest level of education you
received?
How old were you when you left school?
3.
When you were in school, did you attend a regular classroom? (For those still in school: Are you
attending a regular classroom in school?)
G Yes (go to 4)
G No
Can you tell me something about the class?
What was it like?
Were you in this class all the time when you were
in school?
Were there other adults there to help you out in
the classroom?
4.
What did you like about school?
5.
What didn’t you like about school?
6.
Have you ever met with a group of people to talk about what you will be doing after you finish your
schooling?
G No (If no, skip to question 11)
G Yes
7.
Could you tell me what you can remember about this meeting?
Who was there?
G Parents
G Teacher
G Any other people
Were you asked what you would like to do after you finished school?
G Yes
G No
Were your parents asked?
G Yes
G No
Do you think people listened to what you and your parents had to say?
G Yes
G No
8.
Were these talks helpful for you?
9.
What happened to the plans that were made during these talks about your future?
10.
Was there a particular person or a particular thing that was useful/helpful to you when you were
making these plans for the future? (Prompt: the school? A particular teacher? A family doctor? Your
family? Etc.)
Section C - Current Living Arrangements and Activities
11.
Where do you currently live?
G On your own?
G At home with parents/family members
G In a Residence
G With another family
G In a boarding house
G In an apartment with others and a supervisor
G Other:
12.
Is there anything you like or dislike about where you live? (Only ask if older, and it might
reasonable to ask.)
These next questions have to do with every day activities.
13.
Do you do prepare your own meals and snacks yourself?
G Yes
G No
Please comment: (Prompts: how often? Who prepares them for you?)
14.
Do you do your own housecleaning? (being able and actually doing are two separate things).
G No
G Yes
Please comment: (Prompts: how often? What kinds of cleaning do you do? Who does the cleaning
for you?)
15.
Do you manage your own money?
G No
G Yes
Please comment: (prompt: e.g. do you pay bills, like the telephone bill? Who does this for you?)
16.
Do you shop for yourself?
G No
G Yes
Please comment: (prompt: e.g. do you buy your own groceries? Clothes? Who does this for you?
Probe to see if this is truly purchasing things and not just helping to put articles in a shopping cart,
etc.)
17.
Do you take care of all your own personal needs?
G No
G Yes
Please comment: (prompt: e.g. Are you able to bathe yourself and use the facilities on your own?
Who helps you?)
18.
Are there any other activities that you would like to mention?
19.
Are there things that you don’t do, but you would like to be able to do?
20.
(Repeat back the activity mentioned in 19 and ask): What sort of things do you think would help you
to do this?
21.
I’d like you to describe for me what you do in a typical day: (Start off with first prompt: Do you get
up about the same time everyday? And then what do you do?)
Other prompts if necessary:
Do you sometimes go to some sort of Day Care Program? What do you do there?
Do you sometimes go to the movies or to the Mall?
Do you sometimes do paid work or volunteer work or work around the house?
Do you have a favourite activity or hobby that you like to do?
22.
Do you have any problems in your regular day?
23.
What are some of these problems?
24.
(Repeat back to respondent the problem he mentions) What would you think might
help
solve/deal with this xxx problem? (e.g. if transportation is mentioned, say: What do you think
could help out with your transportation problem?)
25.
For the next question, I’m going to read you a list of some services and programs that may be of
benefit to you. For each one I read out, I would like you to tell me if you feel it would be helpful.
(Read each, but follow immediately with the explanation in brackets)
G Advocacy services (A group that lends their support if you need help with something)
G Monitoring of drugs (Help with taking/remembering to take drugs)
G Respite care (Someone to help your parents/caregivers)
G Behaviour management (Counselling to help you understand your feelings)
GA place to go to socialize, rec, etc).
G Pre-vocational/life skills (Training to help you learn how to be more independent)
G Employment (Help in obtaining employment)
G Education (More education past the high school level)
G Sex counselling (Help and counselling with an issue around sex)
G Other: (Is there anything else that you can think of that might be helpful to you?)
Section D - Future Considerations
26.
(Check the answer to question #11 and say: So right now you are e.g. ‘living with your parents’,
so would this be the best living arrangement for you in the future?
G Yes (go to question 27)
G No
what living arrangements do you think would be best
for you in the next few years?
G On your own?
G At home with parents/ other family members
G In a residence
G With another family
G In a boarding house
G In an apartment with others and a supervisor
G Other:
27.
Why do you feel this would be best?
28.
Repeat back to respondent the choice he mentions in 26: e.g. “So you would like to remain living
with your parents” What do you think they will need to help support you in this living arrangement?
(Prompt: a job? help from your parents?) or “So you would like to live on your own?” What do you
think you will need to do this? (Use similar prompts)
29.
Are there any other questions or issues that you have that we have not covered? Could you please
explain?
Thank you very much for taking the time to participate in this survey!
Appendix D
Criteria for Challenging Needs
Appendix D
Criteria for Challenging Needs
Definition of Criteria G
In the provincial budget of 1998, the government announced funding within the Department of Education
for categorical special education teaching units in addition to the ones which existed since 1987. There
were three additional categories, one of which is Criteria G for students with severe
health/neurological-related disorders including Autism. With each category there was a set of criteria.
Until January 2001the intent was that the student was capable of accessing the prescribed curriculum.
Prescribed curriculum means the child is accessing academic programming via Pathway 1 and/or 2.
In January 2001, the criteria changed to allow that the student could attain minimum graduation
requirements. Minimum graduation requirements means the student is accessing academic
programming via Pathway 1, 2 and/or 3.
In April 2001, the criteria broadened again. Currently, a child might qualify for programming via
Criteria G if all criteria are met including evidence that they are functioning intellectually above the
moderate level of development, and the team has developed programming which allows the child to
access curriculum on Pathways 1, 2, 3, and/or 4.
The criteria has always stated that the child must be accessing alternate courses specific to their disorder
(for example: social skills, communication, sensory integration). The broadening of the criteria
addresses the academic portion of the program.
In summary, the child receiving services via Criteria G can be accessing academic courses via Pathway
1, 2, 3 and/or 4. They must have 4 non-academic alternate courses developed as part of their program,
they must be functioning above a moderate level of intellectual development, and they must meet the
other criteria as indicated in the application package.
Students may still access categorical special education service via Criteria C if the primary diagnosis is a
moderate/global severe mental handicap and they require an alternate curriculum. Also, a child may
access non-categorical special education service if they have such an identified exceptionality as Autism
Spectrum Disorder.
Appendix E
Individual Support Service Plan
Appendix E
Individual Support Service Plan
THE INDIVIDUAL SUPPORT SERVICES PLANNING PROCESS
The Individual Support Services Planning Process as outlined in the Special Education Policy Manual
(1992) and the Model for the Coordination of Services to Children and Youth with Special Needs in
Newfoundland and Labrador (1996) is a powerful tool for assisting educators, students and parents to
develop effective ways of meeting the individual needs of students with exceptionalities. For this
reason, a Decision-Making Framework for matching technology to students with special needs is
presented within the context of the Individual Support Services Planning Process and would most
effectively be utilized at the referral or planning team meeting stages.
Implementation of the "Decision-Making Framework for Incorporating Technology" into the Individual
Support Services Planning Process is based on the following assumptions:
C The decision-makers are familiar with the Individual Support Services Planning Process
C Screening and Identification, Exploration of Strategies and Referral to the Individual Support
Services Planning Team have occurred already or extensive needs have been previously
identified and assessment data and programming information exists.
C The Individual Support Services Planning Team consists of members who reflect the student's
needs, ensuring Occupational Therapist (OT), Physiotherapist (PT) and Speech and Language
Pathologist (SLP) as well as other professionals are included as needed.
C A discussion has taken place concerning the nature of difficulty the student is experiencing and
possible interventions to ensure his/her educational goals are met.
C Student strengths, needs, learning styles and interests are always included when discussing and
planning student goals.
C Technology is considered an option for meeting goal(s).
C Parents and/or students are receptive to using technology.
C Technological supports are available.
INDIVIDUAL SUPPORT SERVICES PLANNING TEAM
Depending on the needs of a particular student, the team may consist of few or many team members.
Any professional who does not attend a planning meeting, but provides important information to the
team through consultation should be included as one of the Support Services Planning Team members.
This person's involvement can be indicated by writing consult beside his/her name in the support
services plan. A list of possible team members and their roles relative to technology decision making and
planning are provided below.
Student
The student should be afforded the opportunity to participate in his/her own support services
planning meeting. He/she can assist the planning team to individualize programs by sharing
interests, strengths, limitations as well as likes and dislikes. Such information will help the team
decide which teaching tools (technological and otherwise) and strategies to use and not use. When
planning for transition to postschool environments, a student can assist in choosing potential training
and work environments, living arrangements and leisure pursuits.
Parents/Guardians
Parents have a right to be active members during the entire process. They often know their child's
strengths and needs, likes and dislikes and can provide insight into the student's background. Parents
are advocates for their child. This is especially important when a student is unable to successfully
communicate his/her own needs and preferences, whether it is concerning a technological device,
career choice or living accommodations. When technology options are being explored, parent and
student technology preferences should be given serious consideration at the team meeting and each
should feel free to contribute to any part of the ISSP. If a parent desires to bring a child advocate
(support person) to an ISST meeting, he/she may do so.
Administrators
Principals are responsible for ensuring that students with exceptionalities receive appropriate
programs. They also often authorize or assist in securing funds for technology equipment and
support. For these reasons administrators play key roles in the decision-making process for matching
technology to students with special needs. After the initial meeting and depending on the number of
support services planning meetings in which the administrator may be involved, a case manager may
be designated to chair future meetings. However, when the administrator is unable to attend he/she
should be informed of the technology options list created by the team and the rationale for choosing
one technology over another.
Special Education Teachers
Special Education teachers often coordinate services and resources, provide consultation to regular
education teachers, gather information needed for establishing ISSP goals and objectives, provide
instruction, and help match student strengths, needs, interests and learning styles to appropriate
programs and tools. They may assist with transitions throughout a student's school career as well as
transition to the postschool environment.
Classroom/Subject Area Teachers
Those teachers with whom a student spends the majority of his time in school should play an active
role in program planning. The classroom/subject area teachers are primarily responsible for the
student with exceptionalities. With the help of special education personnel at the school or district
level they strive to provide a program that matches the student's strengths, needs, interests and
learning styles.
Guidance Counsellors
School Counsellors help facilitate the educational, personal, social, emotional and career
development of students in school and community. More specifically they can assist with assessment
and development of ISSP goals pertaining to effective work and study habits, behaviour and career
planning. As members of the school-based team they can help students gain access to school, district
and community services. They assist students with transitions between schools throughout the K-12
system and to postschool environments.
Educational Psychologists
School psychologists may be available for assessment and consultation when a school does not have a
guidance counsellor on staff when more indepth assessment is required, or if the guidance counsellor
seeks consultation.
Student Assistants
Occasionally a student's needs are significant enough to require support from a student assistant. In
such cases the student assistant may be the primary person who assists with mobility,
communication, feeding and toileting in school. The assistant who consistently works with a
particular student can provide valuable information to the team when discussing technology options,
student strengths, needs and interests. If the student assistant is unable to attend a meeting he/she
should be given opportunity to contribute thoughts and ideas to another team member to share at
the planning meeting and should be informed of any decisions, issues and plans discussed.
Itinerant Teachers for the Hearing Impaired
Most boards throughout the province have teachers available for help with programming for deaf and
hard of hearing students. The districts should be contacted for information regarding referral
procedures.
Itinerant Teachers for the Visually Impaired
Most boards have itinerant teachers for the visually impaired who are available for programming
assistance and who can provide assistance regarding low vision aids and technology for the visually
impaired. The district should be contacted for information regarding referral procedures. The
itinerants can provide valuable assistance to teams involved in transition planning as they can
establish linkages to outside agencies and programs that provide services to adults with visual
impairments.
District Staff Persons
Staff responsible for support services and/or program development can assist the team to determine
and deliver various kinds of services and programs for students with exceptionalities. Depending on
the extent and complexity of student needs, district staff persons may have minimal or maximum
involvement with the team meetings.
Postsecondary Education Personnel
Representatives from university and other training institutions can provide information about
available programs and support services for students with exceptionalities. For example, The Glen
Roy Blundon Center of Memorial University of Newfoundland can provide information to the
planning team pertaining to alternate academic accommodations, wheelchair lifts, adaptive
technology, tutorial rooms and so forth available for students with special needs who attend
Memorial University. This information may be obtained in consultation and shared with the planning
team (as in most cases) or depending on the complexity of the needs and school location the team
may invite a staff member from the centre to attend an ISSP meeting.
Community Health Nurse (CHN)
Depending on the extent of the student's medical/health needs, the CHN nurse may be part of the
support services planning team. The primary functions of the nurse as a team member is to provide
medical/health information and act as liaison between home and school, physician and other health
professionals.
Social Worker
Where the Department of Social Services is responsible for purchasing a piece of technology, a social
worker should be present at the ISSP team meeting. If support is provided to the student at home or
in the community through Department of Social Services, the social worker should also be part of
the team.
Speech Language Pathologists
SLP's can assist schools with planning for students with communication and language difficulties.
Many schools can access SLP services in their school district. For those districts that do not have
SLP's, the appropriate health authority can be contacted for information on how to access services of
an SLP. SLP's can provide direct intervention and/or participate in information sharing and
collaboration with other professionals in schools. SLP's can also assist teachers in developing
communication systems for students who do not use speech as their primary mode of
communication. A communication system may consist of a picture-symbol board or a sophisticated
voice activated communication aid (VOCA). Correctly matching sophisticated communication
devices to students can be a complex, costly and time consuming process and should never be done
without the involvement of a SLP, preferably one having experience with VOCAs.
Occupational Therapists
OT's can help to develop and maintain skills for optimal functioning in a student's home, school and
community. When a student is receiving services from an OT employed by community health
boards and health care facilities, that OT may be available to assist schools. She may provide services
in assessment, consultation, program planning and equipment selection/adaptation. This may include
information on school and class accessibility, bathroom equipment, desk height adaptations,
computer hardware and seating/positioning assistance with wheelchairs, school chairs, side- lyers
and so forth. OT's can also provide assessment in areas of self-care/daily living skills, fine motor
skills (handwriting, manipulation of classroom materials) and visual perception.
Physical Therapists
A PT's skills are focused towards preventing deformity and helping students develop and/or maintain
optimal gross motor functioning to promote maximum independence in the home, school and
community. When a PT provides service to a student, he/she may be available to assist schools.
He/she may provide services in screening, assessment, consultation, program planning and
equipment selection and /or adaptation. A PT generally deals with movement, ambulation and
positioning and will consult on devices such as standing braces, splints, crutches, walkers and
wheelchairs.
Depending on the complexity of student needs, team members may attend the ISSP meeting or may
provide information to another designated team member (eg. special education teacher, case
manager) who then shares with the Support Services Planning Team.
Appendix F
Criteria for Possible Diagnosis of ASD
Appendix F*
Criteria for Possible Diagnosis of ASD
(a)
Difficulties in verbal and non-verbal communication (uses words without attaching the usual
meaning to them; communicates with gestures instead of words; short attention span).
(b)
Difficulties with social interaction (spends time alone).
(c)
Aggressive and/or self injurious behaviour.
(d)
Repeated body movements (hand flapping, rocking).
(e)
Unusual responses to people; or attachments to objects and resistance to change in routine.
(f)
Sensitivity in sight, hearing, touch, smell and taste.
* Autism Society of Ontario (http://www.autismsociety.on.ca/old/res-1.htm)
Appendix G
Glossary
Appendix G
Glossary
ABA Applied Behavioural Analysis:
Use of behavior modification (a.k.a. operant conditioning) which was originally developed by B.F.
Skinner (a prime developer of Behavioral Psychology) outside the purvue of autism. Lovaas and other
psychologists adapted it as a therapy/educational method for autistic children, and it is his adaptation
which is known as The Lovaas Method or DTT.
ADHD Attention Deficit Hyperactivity Disorder:
ADHD is a diagnosis applied to children and adults who consistently display certain characteristic
behaviors over a period of time. The most common behaviors fall into three categories: inattention,
hyperactivity, and impulsivity.
Alternate Family Care:
< Living with an approved family in a private residence (often viewed as an extension to Foster Care).
< Room and Board, supervision, personal and social support is provided to the individual placed in the
program.
< Social workers monitor placements.
BMS Behaviour Management Specialist:
Behaviour Management Specialists work in District Offices of the Department of Human Resources
and Employment throughout Newfoundland and Labrador. People qualify for the services of a BMS if
they have a diagnosed developmental disability along with an intellectual impairment, are school-aged or
older, and act in a way which threatens community placement. The service is based on the idea that
offering the right behavioral support to people will improve quality of life and guarantee that they are
included in the community.
CMS Child Management Specialist:
The Home Visitor or Child Management Specialist is a person with the minimum qualifications of a
degree in Psychology or related discipline and experience with early intervention services. They are
employed in this province by the Direct Home Services Program of the Division of Family and
Rehabilitative Services of the Department of Health and Community Services.
Families qualify for the service if one or more of their children, aged 0 to 5 years, are considered to be
at risk or demonstrate significant developmental delay in any one of areas of: learning ability, language,
physical, social or self help skills. The service is based on the idea that the provision of early and
consistent development and family supportive services can greatly improve the quality of life for all
concerned.
Cooperative Apartment:
< A program operated by community boards that encourages independence through a support plan
incorporating behavioural and skill development components.
Independent Living Arrangement:
< In an apartment or house with supports and supervised by family or others.
ISSP:
The Individual Support Services Planning Process as outlined in the Special Education Policy Manual
(1992) and the Model for the Coordination of Services to Children and Youth with Special Needs in
Newfoundland and Labrador (1996) is a powerful tool for assisting educators, students and parents to
develop effective ways of meeting the individual needs of students with exceptionalities. For this
reason, a Decision-Making Framework for matching technology to students with special needs is
presented within the context of the Individual Support Services Planning Process and would most
effectively be utilized at the referral or planning team meeting stages.
Depending on the needs of a particular student, the team may consist of few or many team
members. Any professional who does not attend a planning meeting, but provides important
information to the team through consultation can be included as one of the Support Services Planning
Team members. This person's involvement can be indicated by writing consult beside his/her name in
the support services plan. A list of possible team members and their roles relative to technology
decision making and planning include: Student, Parents/Guardians, Administrators, Special Education
Teachers, Classroom/Subject Area Teachers, Guidance Counsellors, Educational Psychologists, Student
Assistants, Itinerant Teachers, District Staff Persons, Postsecondary Education Personnel, Community
Health Nurse (CHN), Social Worker, Speech Language Pathologists, Physical Therapists and
Behavioural Management Specialists.
Prevocational Centre:
The Prevocational Assessment and Training Centre opened in St. John’s in September 1982 to
provide a stable environment for students and persons leaving the Pine Grove School through a planned
closing. As Exon House was also in the planning stages for closing, it was thought that persons from this
institution could avail of the Prevocational Centre. By 1990, the centre became a closed shop and was
not accepting new individuals into the program; at that point, there were 37 individuals availing of the
centre on a daily basis, and 26 staff supported them.
In 1996, the Goss Gilroy report commissioned by the Department of Social Services recommended
the closure of the Prevocational Centre. In December 1999, a committee was struck to effect the
closure. The Newfoundland and Labrador Association for Community Living was represented on that
committee to ensure that individuals with developmental disabilities would have access to individualized
employment and training options in the community. By 2000, the Prevocational Centre was closed.
Residence:
Living in a school residence.
Student Assistant:
Occasionally a student's needs are significant enough to require support from a student assistant. In
such cases the student assistant is the primary person who assists with mobility, communication, feeding
and toileting in school.
Appendix H
Definition of Criteria
Appendix H
Definition of Criteria C
A student qualifies for services via Criteria C of Teacher Staffing Policy 10.1 if comprehensive
assessment shows that the student currently exhibits all of the characteristics described below:
1.
Impairment in cognitive functioning as per the classifications given in the DSM IV (specifically IQ
of 50 or below) along with severe impairment of adaptive functioning in four out of five of the
following areas:
<
<
<
<
<
Self Help/Daily Living
Communication
Gross/Fine Motor
Social/Emotional
Functional Academics
2.
The student's total curriculum is alternate to the Prescribed Provincial Curriculum and
represents programming in the domains identified in Using Our Strengths Programming for
Individual Needs (1992); i.e., academics, communication, decision making, functional skills,
nonscheduled time usage, self concept/self esteem, sexuality and social skills.
3.
The primary disability is not a sensory impairment or a physical disability.