Autism Ontario Housing Position Statement
To ensure that people living with Autism Spectrum Disorder (ASD) and their families have timely access to a range of supportive living options across Ontario. These options must be safe, affordable, flexible and responsive to changing developmental trajectories of the supported individual.
For many of us, home is the foundation for our life. Our home provides us with a sense of autonomy, independence, meaning, belonging and security, as well as a connection to a larger community. Our home can provide a place of both stability and growth, a place where we have decided for ourselves how and with whom we want to live.
The concept of home for people with Autism Spectrum Disorder does not follow a single model and the best place to call home may change many times over a lifetime in relative to life circumstances and needs. For some adults on the spectrum, home can be a place of independence, provided there is access to a full range of individually determined supports needed to accommodate the complexities of life on the spectrum. These may include a range of community, health, mental health, social, relational, adaptive skills, and leisure supports that vary in intensity over time. For others, home can mean living with a parent or caregiver well into adulthood and for some, home is the place you have to go to live in order to receive the support you need. Parents and caregivers play a vital role in seeking appropriate housing solutions, since they best understand the unique combination of strengths and needs of their loved one.
In 2013, the Redpath Centre undertook the largest study of its kind examining the services and supports available to young adults and adults on the autism spectrum in Ontario. Diversity in Ontario’s Youth and Adults with Autism Spectrum Disorders: Complex Needs in Unprepared Systems, found that approximately 60% of respondents were living with family, 14% were living on their own with no supports, 9% were in a group home, 6% were on their own with the support of family and friends, 6% lived on their own with the support of professionals, 2% lived in home share or with live-in supports, and 4% were in other living situations such as institutions and college residence.
Currently, there are approximately 135,000 people on the autism spectrum in Ontario and their options for housing are entirely inadequate. There are over 14,000 identified individuals[i] on wait lists for affordable housing in the province of Ontario. According to the Auditor General’s 2016 annual report, with every person who comes off the list, six new people are added. These figures do not include those who have not identified a current need for housing or those who believe they are ineligible for such supports. In 2014, the Developmental Services Capacity-Building Task Force on Housing assembled to address the housing crisis confronting Ontario adults with developmental disabilities. Through surveys and feedback, the Housing Study Group found that the key factors that facilitated action were: creative and innovative thinking, families assuming an active role in the housing process, the ability to connect with other families in similar situations, and finally, family and community partnerships.
Due to long wait lists and the lack of available government funds, families are coming together, developing ideas and pooling resources. This has led to a variety of different models, with a variety of different partnerships. Service managers and housing providers need to be encouraged to look at broader issues or patterns and be empowered to develop flexible, creative solutions. Incentives must be available for forward-thinking housing developers. Providers of supportive housing for people with ASD need to have access to a mechanism for the collaborative exchange of resource information, training opportunities, and best practice models.
No matter where a person falls along the autism spectrum, our society has placed importance on people with ASD living in their communities, going to school or work with friends and peers, having relationships with their neighbours, and engaging in local community programs. Isolating people with ASD can lead to depression and sadness. Remaining close to loved ones when placed into the care of others is vital to a person’s mental health. We all need emotional connections to thrive and survive: this includes a connection to our community, however that is defined.
Fundamentals of Housing for People on the Spectrum
- People on the autism spectrum have the right to choose where and with whom they live.
- “Home” is a place:
- Where people exercise control over their daily routines, including who enters to visit and stay;
- That provides chosen levels of privacy and which accommodates each person’s chosen lifestyle;
- Where people have agreed to live together;
- Where people have a connection to their communities;
- That provides continuity, consistency and is contractually protected under the Landlord and Tenant Act.
- People have the right to live in suitable, adequate and accessible housing that they can afford.
- Parents of adult children living at home must be supported to create and maintain a safe living environment. This must include a transition plan for the time when parents are no longer able to provide necessary supports for their adult children.
- Life transitions must be managed thoughtfully, over time so they are responsive to changing developmental trajectories. The ability of people with ASD to continue to expand their areas of interest, communication and social skills, and life skills over time must not be overlooked or underestimated.
It is Autism Ontario’s position that:
- Parents, caregivers and people with ASD must be encouraged to start thinking about housing options early.
Finding a suitable housing situation is a lengthy process. Families need to have access to a network of information about all possible scenarios and options for housing, and the opportunity to learn from families in similar situations who have loved ones with similar needs. Opportunities for individuals with ASD to experience different housing scenarios on a trial basis must be available.
- Housing opportunities must consider the individual’s existing community and offer the necessary supports to encourage inclusion and integration in the community as a whole
Connect with other members of your community, contact your local Autism Ontario Chapter, and other families in your area.
- “Supportive housing” options must engage with and accommodate a broad range of challenges
For example, some people on the spectrum benefit from an “inter-dependent living” or co-housing arrangement with peers who have similar life experiences and interests. Challenges with social communication experienced by people with ASD does not represent a lack of social interest – inter-dependent living allows people who are capable of living independently a much-needed opportunity to engage socially.
- Parents, caregivers and individuals with ASD must have ready access to experts who can help navigate the current housing systems and provide guidance during times of housing crisis and/or loss
Navigating our current system is complicated and mired in complexity and bureaucracy. As such, accessing programs and services can be a formidable barrier. Expert supports are crucial: this may include professional supports such as social workers and lawyers, and more informal supports such a network of other families facing similar challenges. Having access to experts who may guide individuals or families during times of housing crisis or loss is crucial as this destabilizing event may spiral into job loss, mental health crisis and social isolation. Alternatives to moving back with family or caregivers, or the traditional shelter system must be imagined collaboratively with families, caregivers and individuals with ASD.
- The form of support necessary which may enable a person with ASD to access and maintain housing best suited to their needs must be provided by support staff who are trained, well-resourced and knowledgeable
Promotion of independence in all aspects of life should be the primary concern of all support staff.
- Parents, caregivers and adults with ASD will benefit from understanding how current legislation informs the changing legal relationships between their adult children and businesses. Real legislative barriers exist for parents and caregivers seeking to provide their adult children with supported decision making and consent. For individuals with intellectual disability whom may benefit from supported decision making alongside their parent or caregiver, the current legal apparatus does not exist to make this possible in Ontario. At this time, there is a barrier for parents and caregivers to support their adult children to complete routine tasks, such as renewing their health card or changing their address with the CRA without families applying for guardianship of their adult children. This is a human rights issue, as well as a real barrier for individuals entering into contracts with housing providers, among other things.
[i] Ending the Wait. Housing Study Group, 2013
Resources and articles to help you build a more inclusive community for people living with Autism Spectrum Disorder