The blog this week was written by George Martin, President of The Arcadia Institute. This is the second in a three-part series on the history of the development of programs. The first part covered the period prior to our first contract with Kalamazoo Community Mental Health and Substance Abuse Services. During the first part of our history we tended to respond to situations and moved on ideas as they arose or came our way. With the Mental Health contract we entered into a period of more structured and intentional programming.
That contract was the result of a series of discussions that I had with Jeff Patton, their Executive Director, about possible ways for people served by that agency to take part more fully in community life and to move away from a primary emphasis on services provided by disability-specific organizations. These discussions took place over several months in 2006 and concluded with a decision by Jeff to provide initial funding from a special account, beginning in January of 2007 with adults with intellectual and developmental disabilities. Since that time we have expanded the contract to work with children as well, and we have worked with several hundred individuals.
That is the short story of how the work began. The full story goes as far back as the mid-seventies when the mental health system in the state of Michigan adopted a policy of ‘deinstitutionalization’ and made the decision to begin the process of eliminating large state facilities. Beginning in the fall of 1976, I was responsible for leading a planning process to develop a comprehensive system of services to carry out deinstitutionalization in our county. Over a period of several years a number of volunteers and agency professionals laid the foundation for the system which provided alternatives for all our people in state institutions and large nursing homes to live within our community.
We did a good job, and many individuals and families have lived richer lives because of that work. However, the search for better alternatives has never really ended. Even as we were creating the local system of services, some of us were involved in developing pathways for people to not only be ‘in’ the community, but also to be a full participating ‘part of’ the community, as far back as the early 1980’s.
While some people who provide services directly have had a tendency to fall into a pattern of continuing the same programs over time, I have always believed that remaining in place inevitably leads to decline. To be sure, stability and long standing relationships, as well as somewhat predictably routines have been helpful and necessary for some people with disabilities. However, I think that improvements have always come when some people are pressing to do better, not settling for established ways. I think that the best mixture probably has been that of maintaining some continuity blended with some change, but always with support for people to grow, to exercise more freedom, to gain competencies and respect.
For many years I accepted the analysis that the community had to be prepared, that it was not ready to fully include people with disabilities. At some point it occurred to me that perhaps all of my assumptions needed to be questioned. Perhaps it was not the community setting up barriers. Perhaps it was me and others who were supposed to be experts about people with disabilities who were setting low expectations and limiting access to community participation. What if I based my work on the assumption that the community will respond if approached, and if they are unsure of how to include people they can learn with my help? This shift in thinking led to the development of what became the Community Participation Initiative, a conscious drive to open doors to the community and provide staff to coach the community if they needed it to take people with disabilities into the programs and activities that were available to all citizens. This is the work that Kalamazoo Community Mental Health and Substance Abuse Services entrusted the Institute to do.
A number of people have directly influenced my thinking over the years as this concept of community participation has evolved, including the following:
- Cindy Burkhower, one of the first people in Michigan to talk about ways to introduce people to community,
- John and Connie O’Brien, who have more clearly and completely articulated the concept of community participation than anyone I know,
- Beth Mount, whose pioneering work on person centered planning, supported employment and living in community,
- John McKnight, who has translated his thoughts on community building for all into terms that apply to our work with people who have disabilities,
- Tip Ray, who was the first person I know to do what we call coaching to assist community agencies to include people who may need adaptations and accommodations,
- Rebecca Shuman, a colleague here in Michigan whose creativity and persistence in Midland taught the whole state how people should live,
- Kathy Batholomeuw-Lorimer, down in Louisville, Kentucky, who figured out how to make community participation work for people with more significant intellectual and physical disabilities, and
- Carol Sundberg who applied those ideas in our community, and the
- Many individuals, parents, and other professionals who have contributed ideas and tried out ideas I have introduced we brought in from other places.
The work of all these people and more, as well as those who developed and advocated ideas for community-based instruction and inclusive education, self determination, supported employment and related ways that people must be, and can be, fully included among us.
In the third section in this series I will describe the elements of the Community Participation Initiative and the evolution of our newest component, Community Brokering.