The Challenges of Special Needs Housing: Waiting List Hell

Instead of talking about general and generic strokes, here we are doing something different. We’re digging in on a personal level, to convey one of the biggest challenges of finding housing 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 main caregivers, their parents, due to old age.

Connecticut state law promises to find housing for these individuals based on which of three priorities their situation qualifies them for: housing within one year for the top priority and within five years for the bottom rank. But there is a problem: the waiting list is broken. The priority system does not work. No one 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 caregivers die. There are literally families in Connecticut where primary caregivers have been decades since retirement, and the special needs children they care for 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 occupy all of the state’s adult special needs housing spaces, leaving the other 1,110 + waiting. One family has spent over 23 years in the Priority One “one year wait” group and hasn’t even heard from their caseworker in over two decades. Her daughter is now 42 years old and her parents are in their late 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 runs out. At 20 they have a speech therapist, occupational therapist, physical therapist, several teachers, counselors, and more… and at 21 they have their parents. That places an unimaginable burden on parents, but it also means the waiting list grows every day…and never shrinks.

Fortunately, Connecticut is just one state. Unfortunately, it’s 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 supported, supervised or assisted homes, 11% live independently, 3.5% live in foster situations and 1.5% live in state institutions. No matter where you live, unfortunately, if you’re an adult with special needs, living with your parents is the norm.