In The Politics of Autism, I discuss the day-to-day challenges facing autistic people and their families.
The complex, called the Dave Wright Apartments, opened in December and is among innovative housing developments popping up across the U.S. to serve those who were diagnosed with autism as children amid increased awareness about the disorder and changes in how it's defined. The developments are often spearheaded by parents who see their adult children's desire for independence and wonder who will care for them in the future.
According to the A.J. Drexel Autism Institute, 87 percent of adults with autism live with their parents at some point between high school and their early 20s — a far higher percentage than the general population.
"They want to live independently and they want to work. They want to be involved. Right now there are just not enough opportunities for them to do those things," said Debra Caudy, who is working with her husband on a housing development near Dallas inspired by their 19-year-old autistic son, Jon.
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Elliot Frank, president of the nonprofit Autism Housing Development Corporation of Pittsburgh, which was behind the Dave Wright Apartments where Masha Gregory lives, has watched as a community has formed there. Frank said he came up with the concept after hearing a businessman talk about employing autistic adults and wondering where they would live.
"The whole concept of what we call disability housing, it's not what we used to think about," Frank said.On September 10, 2016, dozens of autistic people, individuals, family members, service providers, officials from state human services and housing agencies, finance professionals, developers, and designers met to address the challenge of autism housing in Massachusetts. This project was joint effort of Autism Housing Pathways, The Arc of Massachusetts, and Advocates for Autism of Massachusetts. From the just-released white paper:
- There is a small core of housing models that could be collectively adapted to the needs of a wide variety of residents:
- Individual apartments and condo
- Shared living
- Inclusive small footprint units (such as micro-units and single room occupancy)
- Inclusive co-housing
- Transitional housing
- There is still a role for congregate housing for some individuals with extreme maladaptive behaviors, but even this model can be re-imagined to create greater self-direction and privacy.
- Drop-in services for cueing are needed.
- Affordability, the shortage of vouchers, staff training and quality, and transportation are systemic problems. Beyond these, most barriers to housing are more individualized.
- Incorporating Braddock and Rowell’s “Six Most Common Home Modifications”, plus soundproofing, into new housing for people with autism, and into a percentage of new housing generally, would meet the needs of a majority of people with autism, while more significant modifications would be needed for about a quarter of autistics.
- Technology can improve people’s ability to live independently, but they will need options to pay for assessments and the technology (including apps), whether through MassHealth, DDS, or other insurance.
- Good communication, education about housing options, and a person-centered holistic approach that starts early is conducive to a good outcome. This approach should be embedded into a beefed up transition process that incorporates applying for housing vouchers and improving independent living skills.
- The housing sector needs to better understand autism. The housing committee of the Autism Commission should consider expanding its membership to include more representation from the housing sector. Training for housing professionals in autism should be explored.
- Data collection should be undertaken to answer questions about overall housing demand, demand for the models discussed, and homelessness in the autism community. These data can be the basis for establishing housing production targets
