Instead of talking about general and generic strokes, we are doing something different here. We are digging deeper on a personal level, to convey one of the greatest challenges of finding a home for the first time for a young adult with special needs. We are going to talk about what is happening in one of the states on the east coast: Connecticut.
In Connecticut right now, there are more than two thousand adults with intellectual disabilities. Most of them live with their families, despite desperately wanting to be independent and live their own lives. Some have been waiting for so long that they are in legitimate danger of losing their primary caregivers, their parents, to old age.
Connecticut state law promises to find housing for these people based on which of the three priorities their situation qualifies them for: housing within one year for the highest priority and within five years for the lowest rank. But there is a problem: the waiting list is broken. The priority system does not work. Nobody gets housing and everyone is still waiting.
The first problem is that state law prevents anyone with an intellectual disability from being placed in one of the state’s group homes unless they are abused, abandoned, or their primary caregiver dies. There are literally families in Connecticut where the primary caregivers have spent decades in retirement and the children with special needs in their care are approaching retirement age.
The second problem is that there is simply no funding for the programs that are supposed to process the waiting list. The state has a $ 1 billion budget for the Department of Developmental Disabilities, with most of it going to support the 961 people who currently fill all seats in state housing for adults with special needs, leaving the other 1,110 + waiting. A family has spent more than 23 years in the Priority One “one year wait” group and has not even heard from their caseworker in more than two decades. Their daughter is now 42 years old and her parents in their early 70s.
The third problem is the “aging” process: By the time a person with special needs turns 21, all the federal money that supported their education and therapy simply ends. At 20 they have a speech therapist, an occupational therapist, a physical therapist, various teachers, counselors and more … and at 21 they have their parents. That puts an unimaginable burden on parents, but it also means that the waiting list grows every day … and it never shrinks.
Fortunately, Connecticut is just one state. Unfortunately, it is not always better elsewhere. Nationwide, counting the entire population of people with special needs, 53% of all of them still live at home, with their parents. Another 31% live in assisted, supervised or assisted homes, 11% live independently, 3.5% live in foster care and 1.5% live in state institutions. No matter where you live, unfortunately, if you are an adult with special needs, living with your parents is the norm.