The Evolution of the Quality of Care in Developmental Disabilities

Jim Conroy: Continuing the thoughts about quality into the future will require selecting, I think, some areas of focus in human endeavors. You've got to take one bite at a time. In this case, I think we've been working on freedom, self-determination, self-direction—and there are many terms for this.

Incidentally, that movement, that way of thinking is sweeping the field of aging, as well, just in time for me because people…the Baby Boomers, my age, we say 82% of us would rather die than go into a nursing home. We'd rather have that $100,000 in public funds and be able to control it to stay in a place we want. What a concept. So this is actually a very exciting future we're looking at. Freedom, though, and self-determination is one place that we must pay attention to.

And I want to end with the thought about relationships. Almost everybody you talk to. If you go to a party, just walk around, ask people "What are the one or two things most important about the quality of your life?" Eight out of ten are going to mention family and friends right in those top two. And we haven't paid attention to that. You know what we fund in America for supports and services for folks with disabilities? We fund, by law, health and safety because that's what's in the Medicaid law, and the Medicaid funding stream dominates a lot of what we do these days in America in the disability field. Medicaid is about poor people's health care, and the law itself says health and safety.

We now have the challenge of going beyond that, and what's most important for people to have a warm, fulfilling, rewarding life? Relationships is very near the top. We haven't learned how to teach it or how to measure it or how to monitor it. I, myself, have spent years trying to figure out a reliable measure of the quality and depth of human contact and connectedness that we have. That is the next challenge, and I hope we make progress on that because that will make a lot of people a lot happier.