Electronic Thesis and Dissertation Repository

Thesis Format

Monograph

Degree

Doctor of Philosophy

Program

Health and Rehabilitation Sciences

Supervisor

Kirkwood, Kenneth W.

Abstract

Social inclusion for people with Autism Spectrum Disorder (ASD) is a widely

accepted social value. Policy implementation impacts on health, experience of inclusion and on individuals and caregivers.

Method. This study used a qualitative directed content analysis to analyse the needs, care, services and policy which influence the care and support of adults with ASD in the Province of Ontario. Caregivers of adults with ASD were interviewed to determine: a) how the Services and Supports to Promote the Social Inclusion of Persons with Developmental Disabilities Act, 2008, is experienced and b) has influenced how they and their loved ones with ASD live, c) what their needs are, d) how these needs are being met and e) by whom.

Results. Themes identified in this research aligned with Hall’s themes for effective

social inclusion. These themes could then be broken down into subcategories, which included: a) health and mental health, b) isolation, c) housing preferences, d) advance care planning, e) suitability of services and supports, f) inefficiencies, waitlists and distrust in the system, and g) financial constraints.

Discussion. Findings suggested that although social inclusion policy in the Province

of Ontario is intended to promote social inclusion, there are systemic barriers including: a) inefficient application and funding processes, b) limitations on how funds can be used, c) distinct needs based on age and prior history with institutionalization and d) insufficient qualified service providers to meet the needs of this population.

Contribution to Research. This study has important implications for practice and

research, including identifying: a) barriers to effective social inclusion within public policy as perceived by caregivers, and b) priorities and preferences of the target population of the policy.

Themes identified in this research include acceptance by and within the community, meaningful, reciprocal relationships, involvement in activities, appropriate housing, employment and access to formal and informal supports. Barriers to effective inclusion included: waitlists for services and funding, isolation, health and mental health and financial constraints.

Findings suggest that although Ontario’s social inclusion policy is intended to promote social inclusion, systemic barriers abound: inefficient application and funding processes; limitations on how funds can be used, all of which hinder adults with autism and their caregivers in participating in the community.

An analysis of policy impacts on the health of adults with autism and their caregivers has important implications for practice and research. Recommendations include: developing a streamlined transition from child and youth services to services for adults to reduce gaps in care; defining social inclusion and strategies to analyze whether or not it has been achieved and accounting for the emotional and mental health needs of people with autism and their caregivers in policy. Also identified in this research was a need to further examine the effects of maltreatment (e.g., bullying, abuse) among people with autism, as well as the effects of lifelong institutionalization among older people with autism who have now been de-institutionalized in order to facilitate functional and suitable inclusive living experiences for them.

Summary for Lay Audience

The Province of Ontario has developed The Services & Supports to Promote the Social Inclusion of Persons with Developmental Disabilities Act, 2008 (the Act), to outline what services and supports are available to people with developmental disorders, including Autism Spectrum Disorder (ASD). This policy relies heavily on informal (i.e., unpaid, typically family members) caregivers to support people with developmental disorders. In this dissertation, I reviewed the health, inclusion and history of treatment of people with ASD. I then reviewed how the policy was used, and what research and informal media such as newspaper articles have said about how inclusion is experienced in the community and by caregivers. I then interviewed 4 informal caregivers of adults with ASD, an adult who has ASD and identifies as his own caregiver and a formal (i.e., paid) caregiver to learn about how they experience the Act (2008).

Findings suggested that informal caregivers experienced difficulties in the following areas: a) health and mental health, b) isolation, c) housing preferences, d) advance care planning, e) suitability of services and supports, f) inefficiencies, waitlists and distrust in the system, and g) financial constraints. They also cited concerns with long waitlists and unavailability of suitable services or housing for their loved ones with ASD.

The findings from this study could be useful in helping to inform policy by the perspectives of those tasked with implementing it by identifying what is and is not working for the targeted population.

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