Housing Adults with Autism: The Next Emerging Challenge

A silver lining of the pandemic is that now 52% of all adult Americans under the age of 29 are living with their families. In and of itself, this is not good news, but for adults with autism who have always lived with their families, it relieves the stigma and shame of never having achieved that milestone of independence. For now, there’s plenty of people in the same boat.

The coming decade will see half a million more teenagers with autism age out of school-based services and in need of jobs and housing. Viable housing solutions are already at crisis levels with 80,000 individuals on waiting lists for as long as 15 years. Unless radical changes take place, 69% percent of all autism adults will continue to live with parents or other family members.

The last time a sea change occurred over housing the disabled was in 1972 when a young Geraldo Rivera sneaked into the Staten Island Willowbrook State School for individuals with intellectual and developmental disabilities. His exposé of this house of horrors where abuse and neglect were rampant started the process of de-institutionalization. When Willowbrook was finally closed for good in 1987, residents were placed in community-based housing, with the options being group homes, adult homes and supportive apartments. Thirty-three years later, these are still the current models despite the changing and growing needs of a burgeoning adult autism population.

Agencies tasked with providing housing for adults with disabilities are besieged and cash-strapped. Salaries for professionals and support staff remain piteously low. The government historically funds housing programs, but has slashed Medicaid by $763 billion over the next ten years. Medicaid pays for housing, education and vocational training, so these cuts are catastrophic.

Affordability, accessibility and discrimination are other issues affecting housing availability. Average rent for a one-bedroom apartment is 104% of the average SSI benefit. Without access to employment, renting on SSI is not realistic. And organizations trying to solve the problem face the “not in my back yard” stigma that blocks real estate opportunities for housing the disabled.

Since the government has abdicated responsibility for housing the disabled, it is incumbent upon the private sector to fill the void. Recognizing that traditional housing models cater mostly to people with more significant needs, efforts are being made to address the needs everyone on the spectrum.

Newer housing models understand the importance of creating a strong sense of community and maximum independence into one living environment. When adults with autism receive employment and housing support, it is much more cost effective than to place them in a group home setting. Group homes cost upwards of $140,000 per person, per year. Independent living programs with on-site and community supports reduce that cost by tens of thousands of dollars per person. This is the trend of the future, and many states are home to these new models. California, for instance, has The Mission Project, Camphill, Sweetwater Spectrum and Legacy Homes which are all innovative models that allow autistic adults to live their best life.

I’ve researched many places that seem quite wonderful, but they’ve always carried the yearly price tag of Ivy League School tuition. How can we achieve an equitable future for our young adults with autism? The evolving model and philosophy is promising, but needs to include everyone.