What is community?


In October 2013, I had the opportunity to read the Consent Decree between the United States Department of Justice (DOJ) and the state of Rhode Island. My professional life in the field of developmental disabilities has not been the same since. The Consent Decree stemmed back to the Olmstead Supreme Court decision from 1999 which concluded that two people with developmental disabilities in the state of Georgia were not being permitted to access the community and were being restricted in an institutional setting. The decision found that the Americans with Disabilities Act had been violated and because it was a Supreme Court decision, it applied to all 50 states.

Ten years later, President Barack Obama declared 2009 to be the “year of community living.” The Department of Justice began visiting states to see how we were doing implementing the tenants of the Olmstead decision. In some instances, Consent Decrees were issued to assist the state with moving forward. Rhode Island’s Consent Decree talked about people with developmental disabilities being “unnecessarily confined” and “segregated” from the community. The analysis found that people with developmental disabilities often spent their days only with other people with developmental disabilities and paid staff. This was the case whether looking at residential environments or day programming, often referred to as sheltered workshops.

The light bulb went on over my head and remains on to this day. It never occurred to me that the sheltered workshops we have had in place across the state of Ohio for over 40 years could possibly be considered confinement or segregation. After all, they are clean and bright buildings, staffed by competent and caring professionals. We weren’t sheltering people, we were keeping them safe. And yet, as I continued to read, it became clear that the underlying issue was really opportunity. Were people with developmental disabilities being afforded every opportunity that life may have to offer based on their interests and capabilities? Was it possible that we, as professionals, were actually limiting people and keeping them from reaching their true potential under the guise of safety? Were we supporting people in a sheltered environment who could very likely be working in the community?

As an organization, the Shelby County Board of Developmental Disabilities began to explore these questions. We also reviewed federal legislative changes and as a result, determined there was more we could do to assist people with truly being members of our community. The Oxford Dictionary defines community as, “a group of people living in the same place or having a particular interest in common.” The Merriam-Webster Dictionary defines community as, “a unified body of individuals” and “people with common interests living in a particular area.”

We are all part of the Shelby County community. We may live here, or work here. We go out to eat, head to the grocery store, run errands, and possibly belong to a church or various other groups. For the most part we plan our days and decide where we want to go and when.

For people with developmental disabilities, involvement in community life may be very different. The movement in Ohio and across the country is focused on community integration for people with developmental disabilities. Generally speaking, we don’t think about “integration” for people. We are all just part of the community.

For people with developmental disabilities, running to the grocery store or stopping at the library often involves scheduling with a paid professional so that these activities can occur. Work has often meant spending the day in a sheltered environment with other people with developmental disabilities and paid staff. While there is certainly nothing wrong with this kind of support structure, the community integration movement focuses on people with developmental disabilities having the same kind of opportunities to participate in community life as people without disabilities.

For professionals working in this field, we are challenged to do things differently and support people in new and creative ways. As a result, more people are starting to work in the community as opposed to a sheltered environment. More people are involved in community activities in ways where they have participation (attendance) and presence (having a role). This is a time of tremendous opportunity. It is history in the making and we get to be a part of the continued evolution of supports for people with developmental disabilities. What has been done to support people over the past 40 years or more has been great. It can be even better.

The writer has been the superintendent of the Shelby County Board of Developmental Disabilities since 2005. Additionally, she is the superintendent of the Champaign County Board of DD, where she has worked since 2011. She has worked with people with developmental disabilites for 25 years.