Director's Message

Photo of David R. Johnson, Director of the Institute on Community IntegrationDavid R. Johnson, Ph.D.

In November 2010 the Institute on Community Integration marked its 25th anniversary with a gathering at which I was privileged to have the opportunity to speak about the progress our country has made in supporting individuals with disabilities and their families in our communities. Rather than presenting a list of major milestones in legal, medical, legislative and other arenas over recent decades, I shared some of the personal journey my family experienced in caring for my brother Vance from 1945 to 1998.

Vance was born August 11, 1945 and was in every respect healthy and normal. Life was good. At nine months he received a smallpox vaccination and on that same day experienced a severe reaction to the shot resulting in a high fever, a form of viral meningitis. The doctor was called but was not available to come that evening (doctors still made house calls at that time); he offered assurances that the condition was likely to be colic and not to worry. The diagnosis underestimated the severity of Vance's situation. Over the next couple of days more intensive medical treatments were sought; however, the fever had caused irreversible brain damage. Eventually Vance was officially diagnosed with cerebral palsy, and the best medical understanding of the situation of that time was that his condition was irreversible, and that he would likely remain at the developmental level of nine months.

In the 1940s when this occurred there were not the options that there are today for supporting families and children with disabilities in their local communities. My parents, like so many at that time, were pressured to place Vance in a state institution. They refused, and cared for him at home, 24 hours a day, 365 days a year, until my mother passed away in 1980 at age 61. Then my other brother Rick and I assumed legal guardianship and began trying to figure out how to keep Vance at home with our 71-year-old father who had significant medical problems. Ultimately, after making hundreds of calls, we were not successful in putting together a package of in-home supports and services, nor in finding a community placement in a group home. The system of community-based services had simply not evolved far enough to accommodate Vance's needs. So reluctantly we went through commitment proceedings that placed him at a regional treatment center, where he remained for about seven years. Happily, by 1989 the available community options had developed to a point where he could move back into the community to a home with three other adults and live-in staff, and participate in a day program and community life. He remained there until he passed away in 1998.

Our family's story is not unique. Thousands of families across the country have similar stories of their experiences in trying to find the best possible support, care and living situations for their members with intellectual, developmental and other disabilities. And as we at the Institute on Community Integration pause to reflect on our work over the past 25 years, it's these personal stories that demonstrate the progress that has been made in this country in recent decades. They also, however, underscore the importance of continued work to ensure that the services and supports, knowledge and practices, attitudes and policies are in place to make it possible for all brothers and sisters, sons and daughters, neighbors and friends with disabilities to live full lives of their choosing in our local communities. And as we look to the future, it's to that work that all of us at the Institute will continue to be passionately committed.

(Read the full text of Dr. Johnson's remarks from the 25th anniversary celebration.)