This book traces the origins of the revolutionary concept through the writings of Tom Nerney and a few of his colleagues. It shows that the way we have thought about, and treated, citizens with developmental disabilities, has been pernicious - and that a true civil rights movement was necessary. Self-determination became the single most influential concept in the field of developmental disabilities in the 1990s. From its beginnings in southwestern New Hampshire in 1993, as an experiment with a few people and their families, by 2000 there were nineteen states working with large grants from the Robert Wood Johnson Foundation. Ten more received small grants, and thirteen more initiated projects with their own state funds. The Centers for Medicare and Medicaid Service has issued "templates" for states to use in applying self-determination within their Home and Community Based Services (HCBS) Waiver programs. The self-determination imperative is encoded within the language of practically every state and federal disability agency, and also among advocacy organizations such as the Arc of the United States, Self-Advocates Becoming Empowered, and the Autistic Self-Advocacy Network. Its imprint upon the foundations of support systems is unmistakable and indelible.
Although self-determination remains stunningly difficult to sustain even after two decades of effort, the reasons for this are clear and the necessity of change is indisputable. It is fundamentally about power. America's current funding system is by its very nature a "provider payment system." It is very hard for people to have a major say in their own life stories on such a professionally dominated playing field. And yet, the authors are convinced that this revolutionary approach and this simple dignity will become commonplace - in spite of massive resistance in the sense of Kuhn - so that people and their closest allies will routinely help control how to spend the public dollars allocated for their support. Our two decades of rigorous scientific studies have shown that the outcomes of this shift in power are that the quality of lives will improve greatly, and costs will decrease or stay the same.-- Jim Conroy 10/10/13