A number of agencies at the state and federal levels (Departments of Developmental Disabilities, Medicaid, Social Security) oversee programs that Charlie is "eligible" for. The problem is, he may not be able to get a spot in the program or group home that best accommodates his needs. In New Jersey, the waiting list for housing for individuals with developmental disabilities has over 8,000 people on it. The estimated wait time to get a residential placement is 15 years. As a state worker once explained to me, the only reason someone gets off the list is because of "an emergency" – the sudden illness or death of his or her parents.
Our concerns about Charlie's future after he finishes school are shared by thousands of families. A recent survey about the needs of autistic adults conducted by the New York-based Autism Speaks found that, with nearly half a million young people who are on the autism spectrum becoming adults in the next ten years, the need for housing and support services is paramount.
Out of the 10,000 caregivers and 400 individuals who are themselves on the spectrum who responded to the survey, 84% of caregivers reported that an individual on the autism spectrum is currently living at home. Nearly 70% said they had no outside help to provide care.
It doesn't surprise me that families are mostly left to rely on their own resources to care for an older child with disabilities. Everything we have heard about life after school services end has been disheartening. Students might have attended highly regarded private schools for autistic children in New York and New Jersey yet, on "aging out," they graduate "to nothing," and are left to "sit at home".