I thank the Ohio TASH board members for a lively, focused meeting in Westerville. I appreciated the conversation about two faces of the question: Where do people belong, if they happen to have a disability? On the one hand, we wondered together how we can support full community presence and participation by people with disabilities. One answer was the upcoming event in southwest Ohio featuring Al Etmanski of PLAN, described elsewhere in this blog.
While “systems” are more likely to offer people with disabilities places in segregated, congregate settings like sheltered workshops and group homes, I was reminded recently that, while systems don’t create community life for the people they support, sometimes it’s possible to open doors that allow people to step through into community. I had asked service coordinators I work with to write a little about situations they have seen over the past year or so in which a person who uses our system improved their quality of life. I read about a young woman who returned to her home community, started college, began making independent trips to the local public library, and reconnected with her family. I also read about a child who attended his local public school for the first time, after experiencing segregated education. The cloud around these silver linings is that these young people had to experience segregation at all.
Most often what the system offers people is a place in a “program” where community participation consists of “outings”, like a regular trip to the mall with a group from the same program. I think of these places as “partial institutionalization”, similar in to the “partial hospitalization” program offered by the mental health center where I worked many years ago, which gave people with psychiatric conditions who were able to live outside a hospital setting a hospital-like place to spend their days. Now, in the county where I live and work, people eligible for MRDD services ride a bus every weekday to a place where they, and more than 200 others, spend the day in a kind of “partial institutionalization”. It doesn’t provide a living wage, and it’s not my idea of community life. At best, it offers something to do.
The good news on the other side of the question about where people belong is that state-operated developmental centers in Ohio now provide housing and services for “only” about 1700 people, down from around 10,000 at their peak. That relatively good news is tempered by the fact that several thousand Ohioans live in private facilities that often aren’t any closer to community life than public centers. Ohio relies heavily on private facilities, and unfortunately people who live there can’t take the money and simply buy different services. That money belongs to the facility where they live. A quick look at other states shows that it’s possible to do without these facilities, both private and public. Michigan, for example, has fewer than 200 people living in public institutions. It took a state budget crisis and a 20-year-old lawsuit against the state to get Ohio to help people leave public institutions. What would it take for us to learn to live without institutions altogether?
I’m afraid that as long as institutions — public developmental centers, private facilities, segregated schools and county-operated sheltered workshops — exist, they will continue to teach people in our communities that “special people” belong in “special places” where specialists give them “special help”. That lesson is the exact opposite of the beliefs that could lead us to real deinstitutionalization: Everyone has gifts to give. Our communities need the gifts that people with disabilities bring and the gifts that they release in others. We can learn to support people to participate in community life, no matter how severe the impacts of their disabilities. Until we do so, the fabric of our communities will be torn and weaker than it could be. What it takes to get started is the belief that inclusion is possible and the will to begin.