For many intellectually and developmentally disabled people, large campuses or farmsteads may be better options than small group homes. But new state laws could make it hard for big facilities to survive. In December , I watched year-old Andrew Parles fit wood shapes into a simple puzzle in the new vocational building at the Bancroft Lakeside Campus, a residential program in New Jersey that serves 47 adults with autism and intellectual disabilities.
A staff member stood nearbyβnot hovering, exactly, but close enough to intervene if Andrew suddenly started to hit himself in the head. I toured the campus, admiring the cathedral ceilings and brightly painted exteriors, thinking how perfect a place like this would be for my year-old son Jonah, who is also severely autistic and will require round-the-clock supervision his entire life. In , the federal government asked each state to define exactly what types of vocational and residential settings would be eligible to receive federal funding.
Large group homes, farmsteads, and campuses like Lakeside all face possible exclusion. 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 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, 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 midth century.
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.
