Independent Living—In The Jungle Or The Zoo?

Abstract

I first met Drew Batavia in 1989 when I was a long-term care analyst for the Pepper Commission, a congressional commission charged with exploring health and long-term care reform options that would meet the needs of people of all ages. Our paths crossed again in 1992 when I was leading a work group to design the long-term care component of President Clinton’s health care reform initiative. Drew was one of several disability advocates and experts who advised our group on how to incorporate consumer-directed personal assistance services into our proposed national home and community-based care program. Batavia combined his advocacy and analytical skills with his personal experience as a long-time user of personal care attendants to inform his positions on how to finance and implement an independent-living model for long-term care. He applied these same skills to the writing of this book. Although the independent living concept, the movement, and specific programs have received increasing attention in the academic and policy literature over the past decade, this book represents the first comprehensive review of the evolution of this approach, the nature and scope of programs domestically and internationally, how this model compares with other approaches, and the potential role of this model in the future of long-term care reform. The author aptly borrows from the health economist Victor Fuchs in his introductory description of the current state of long-term care as the “jungle vs. the zoo” for people with disabilities. Batavia highlights the trade-offs between freedom and security, noting that “nowhere are they more stark than in the area of long-term care” (p. 13). He arrays the current range of long-term care settings and providers along a freedom–security continuum with nursing home at one extreme and cash assistance—the ultimate in independent living and consumer direction—at the other. Chapter 3 provides a very useful chronology of the development and maturation of the independent living model, from its roots in the civil rights and consumer rights movements, the pressure to deinstitutionalize people with mental illness and mental retardation, the efforts to “normalize” people with disabilities (including subjecting them to the risks of everyday life), and more recent initiatives to apply the independent-living approach to services for the elderly. This overview emphasizes the importance of grassroots campaigns and how they influenced legislative, judicial, and administrative decisions to foster and encourage independent living options for people with disabilities. One minor gap in Batavia’s chronology is his failure to identify the self-determination movement for people with mental retardation and developmental disabilities as a precursor to the maturation of the independent-living concept. Self-determination programs provide an important subgroup of people with disabilities with budgets and the tools to make important decisions about how they live their lives and use resources to meet their needs. The success of this approach in the mental retardation community has lent credence to the B o o k R e v i e w s