In The Politics of Autism, I discuss the day-to-day challenges facing autistic people and their families. Housing is a big one for autistic adults.
The deinstitutionalization of people with intellectual and/or developmental disabilities (I/DD) has reached an all-time high, with the majority of people with I/DD living in community-based settings. Community living is not only preferred by people with I/DD, it is also more cost effective and results in increased positive outcomes across almost all quality of life domains, improved health and safety outcomes, and increases in community participation, relationships, strengthened family contact, and self-determination.
Currently, around 75% of adults with I/DD live with a parent or other caregiver and are not connected to publicly available services and supports. In addition, nearly one million households have a caregiver over the age of 60. As a result, aging parents and family members frequently serve as unpaid primary caregivers for their family member with I/DD. Many of these families worry about what will happen when they are no longer able to provide their family member with I/DD support, including whether their family member will have to live somewhere they do not want to live. To address these concerns, it is important and necessary for people with I/DD and their families to plan for the future. However, more than half of families have indicated that they do not have a plan for the future.
Findings revealed that although there were many reasons people with I/DD moved from their family homes, or moved across residential settings, most commonly people moved as a result of a need for more support, family members having difficulty caring for their loved one, a desire for more independence, or emergency placements resulting from health or safety issues. People with I/DD and family members of people with I/DD often completed rigorous research to determine which options they had available to them; however, information was difficult to find and there was a general lack of resources. In addition, most people with I/DD, especially those with higher support needs, had few options to choose from as a result of an underfunded and inadequate service system. In addition, most of the time family members made the decision about where their family member with I/DD would live on their behalf, sometimes while consulting them, but other times without.
...Autistic people accounted for about 22 percent of the disabled people in the sample. From the report:
As a result of these wants and needs, the overwhelming majority of people with I/DD as well as family members wanted people with I/DD to live in their own homes or apartments. People with I/DD also dreamt of having opportunities to learn new skills, such as cooking or cleaning, having more independence, being able to see their friends whenever they wanted, having a physically accessible home, and being treated with respect.
Athough it was a very small group – only a handful of people – there were some family members who also blamed the lack of institutional options for people with higher support needs on “people who believe they know what’s best,” “influencers who think everyone belongs in one type of setting,” and “autism self-advocates [that] have ruined it for the severely autistic."