This fall, my son reached a milestone I'd been dreading for years. At 16-and-a-half years old, he is almost the same age as my university students.  Were things different, Charlie would be in his junior year of high school, prepping for the SAT and wondering what colleges to apply to. Charlie is severely autistic and has intellectual disabilities. He can write one word (his first name) and his academic work is not at quite the same level as some kindergarteners.  With Charlie getting older (and Jim and I too), a gnawing anxiety has taken root in us. In the US, children with disabilities are "entitled" to receive services until they are 21 years old under the Individuals with Disabilities Education Act. It's a different story for adults. With this in mind, we are taking him out of the school he loves in December and moving him 3,000 miles away to California.  It was 13 years ago that we returned to my husband Jim's home state of New Jersey so Charlie could attend one of the state's well-regarded public school autism programs. After a lot of struggles, Charlie is happy at a public autism center, smiling when he sees his school and calling for his teacher on the weekend.  I grew up in Oakland and we have long thought we might eventually move there. Charlie is an only child and I have a network of relatives, many younger than me, in California. As he's been so settled in school, we had thought we'd wait a few more years before leaving. My husband Jim and I are both professors, in tenured positions at universities in New York and New Jersey. For just one of us to find a new position mid-career is daunting.  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".  A 14-year-old autistic boy, Avonte Oquendo, has been missing since he wandered from his New York City school on 4 October. At the age when most young people are at the cusp of independence, teenagers like Avonte and Charlie are more in need of care than ever.  One hot day last July after Charlie had a very painful outburst due to anxiety about his summer school program and a visit from my parents ending, we decided it was time to leave.  The next morning, I woke up for the first time in years without a nervous stomach and with a renewed sense of hope.  The decision to move has caused a lot of disruption. Charlie has lived in New Jersey for most of his life. He knows the streets and highways here like the rooms of our house. He has been at the same school for four straight years; every teacher and staff member knows him. His general response to change of any sort is a panic attack, and there have been a few.  The more we think about it, moving Charlie now just makes sense. My parents have been having health problems. Moving now means that Charlie can become used to living in the place where he will very likely live for the rest of his life. We can start getting his name on those waiting lists for programs for adults with disabilities. Charlie, like many autistic persons, relies on an excessive, obsessive amount of routine and familiarity in his life. The longer we remain in New Jersey, the harder it will be for him to leave.  Just as many parents of high school juniors, we want to give Charlie the best chance possible as he starts the rest of his life.
Kristina Chew: Disabled children in the US are provided with great services. But for adults, long waitlists mean even finding housing is a struggle