The Challenges of Special Needs Housing: Waiting List Hell

Rather than talk about broad strokes and generics, we’re doing something different here. We’re drilling down to a personal level, to convey one of the greatest challenges of finding first-time housing for a young adult with special needs. We’re 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 caretakers — their parents — to old age.

The state laws of Connecticut promise to find housing for these people based on which of three priorities their situation qualifies them for — housing within a year for the top priority, and within five years for the bottom rank. But there’s a problem: the waiting list is broken. The priority system doesn’t work. No one gets housing, and they all just keep waiting.

The first problem is that state law prevents any intellectually disabled person from being placed in one of the state’s group homes unless they are abused, abandoned, or their primary caretakers pass away. There are literally families in Connecticut where the primary caretakers are decades past retirement, and the special-needs children they care for are approaching retirement age themselves.

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 billion-dollar budget for the Department of Developmental Disabilities, and the bulk of it goes to support the 961 people that are currently occupying all of the spots in state-run housing for adults with special needs, leaving the other 1,110+ just… waiting. One family has spent more than 23 years in the “one-year wait” Priority One group, and haven’t even heard from their caseworker in more than two decades. Their daughter is now 42, and her parents are near 70.

The third problem is the ‘aging out’ process — the moment a person with special needs turns 21, all Federal money that supported their education and therapy simply ends. At 20, they have a speech therapist, an occupational therapist, a physical therapist, several teachers, counselors, and more… and at 21, they have their parents. That places an unimaginable burden on the parents, but it also means that the waiting list is growing every day… and shrinking never.

Fortunately, Connecticut is only one state. Unfortunately, it’s not always better somewhere else. Across the entire nation, counting the entire population of people with special needs, fully 53% of all of them still live at home, with their parents. Another 31% live in supported, supervised, or assisted homes, 11% live independently, 3.5% live in foster situations, and 1.5% live in state-run institutions. No matter where you live, unfortunately, if you’re an adult with special needs, living with your parents is the norm.