Congregate settings for people with intellectual and developmental disabilities (I/DD) have been discouraged for years. During the 1960s, around the time Ken Kesey published One Flew Over the Cuckoo’s Nest, patient advocates began rejecting the idea of the mental institution, arguing that people with disabilities should and could live in their communities. Since that time, the institutionalized I/DD population has dropped by more than 80 percent.
It seemed pretty simple: community good, institutions bad. But these two terms have proven extraordinarily difficult to pin down. Is the difference merely one of size? In 2011, the National Council on Disability defined “institutional settings as housing situations in which more than four people with I/DD” live in a single home. Some autistic people and their families have embraced this definition: The four-person size limit was included in “Keeping the Promise: Self-Advocates Defining the Meaning of Community Living,” a 2011 paper jointly issued by three self-advocacy organizations.
In some states, this guideline is poised to become law, which means such congregate settings may all be excluded from the waiver program. This could prove disastrous for the autism community, which is facing a housing crisis that is only expected to get worse. Right now, 80,000 autistic adults are on waiting lists for residential placements that can be up to 10 years long, and the nonprofit advocacy organization Autism Speaks estimates that half a million autistic children will transition to the adult state-by-state funding system over the next decade. Shortages aside, there are plenty of parents who feel that large facilities like Lakeside are truly the best places for their children and bear no resemblance to the institutions of the mid-20th century.
This sounds like a technical debate, and one limited to a very specific community, which may explain the public’s relative lack of interest. But it touches on a larger question: While many Americans may never need food stamps or unemployment, virtually everyone eventually benefits from Social Security and Medicare. What level of control should the government have over how these subsidies are used? In the case of disabled adults, who should decide what kind of housing best suits their needs? Should it be those individuals and their families, or should it be the state?