In Minnesota, we have a noteworthy legacy when it comes to supporting people with disabilities as independent and inclusive members of our community. Historically, we were very active in supporting human rights, closing large institutions, and moving people into “less restrictive” settings.
This deinstitutionalization process was however, a pendulum swing that created all kinds of additional social stressors like an increased homeless population and a new form of “institutionalization” in smaller settings. It by no means solved the problem of isolation or supported real choice for people with disabilities. When Minnesota moved to close the large institutions, less segregated living options were advocated for. But generally speaking only one option was created, the four-person group home. Many will argue that the four-person group home, although “community integrated,” isolates and segregates in different ways. I hear story after story of older individuals who once had a “sense of community” in their institutional home and now feel isolated in a room in a group home.
Relying on a singular model like the four-bed group home has curtailed the exploration and development of other options, and taken away a fundamental right of individuals with disabilities: to define and choose what “home” is to them. Our lack of other options has forced many people to either go out-of-state where these other options exist, or live in a group home here in Minnesota; something not everyone is comfortable calling home.
Much of Minnesota’s support for independent living, community living and choice of living situation, is far more conceptual than actual, and organizations that support people with disabilities constantly struggle to make progress. This lack of real choice makes Minnesota’s person-centered planning very challenging. In Minnesota, you can plan it, but generally you can’t implement it. There are few real choices! If you have a disability and need a supported living situation, you go to a group home. That is, if you can find an opening.
This dilemma, regarding lack of choice and the ability to really pick your own home for people with disabilities, exists in our state primarily for two reasons. First, Minnesota has not been proactive in supporting and developing a spectrum of options. Second, we have legislated restrictions and limited funding that affects choice.
Let’s take a further look at the spectrum of options. If we think of the group home as mid- point, we can look toward either end to conceptualize a wider range of options that exist or have existed over time.
On the less supported, more independent end of the spectrum, we have options that need better funding like apartments with supports and living in the family home. On the more supported, less independent end of the spectrum, we have larger, more cost-effective, and more structured options like boarding schools and villages. All options have their merits and drawbacks. All are a fit for some and not for others. An example of independent apartments is the new JHAP development, Cornerstone Creek in Golden Valley, with 45 individual units that will be rented to adults with developmental disabilities. Examples of more structured options include settings like The Homestead, a farm for people with autism in Altoona, Iowa, serving 24 adults, or Chileda, a children’s treatment campus and school in La Crosse, Wis. housing up to 48 young people.
When examining the above spectrum, I think we would be hard pressed to find anyone who would advocate for inclusion of the large institution as a place for people with disabilities. We worked hard to close them and they need to stay closed. But the gap between a 10,000 person asylum, like the Eloise Hospital in suburban Detroit, an institution that author Steve Luxenberg wrote about in Annie’s Ghosts, and the favored Minnesota model of the four-person group home is vast, with a myriad of options in-between. Our legacy from deinstitutionalization is reaching an almost unsustainable apex that must be addressed if we really want to support person-centered planning. DHS
and the state legislature are aware of the problems, but solutions remain at the conceptual stage, with only minimal action being taken to remedy the lack of choice. The big question before us is, “How do we as a state embrace a wide spectrum of housing options to really serve all people with disabilities, not just some, and how do we move these options from conceptual ideas into actual homes?”
Sheryl Grassie is executive director of the Minnesota Consortium for Citizens with Disabilities