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Introduction

“Disability is an issue that affects every individual, community, neighborhood, and family in the United States” (IOM, 1991, p. 1). The Institute of Medicine’s (IOM’s) 1991 report Disability in America: Toward a National Agenda for Prevention began with these words. They are as true today as they were 15 years ago.

In fact, a demographic imperative—the aging of the baby boom generation—will soon substantially increase the proportion and numbers of Americans in the older age groups that are most at risk of physical and mental impairments, limitations, and disabilities (U.S. Census Bureau, 2004). At the same time, certain trends in other age groups—for example, the increased rates of survival of extremely premature infants and increases in the prevalence of obesity in younger populations—are putting more children and younger adults at risk of disabling conditions. Thus, the promotion of good health, independence, and social integration for people with disabilities and the prevention of disabling injuries, diseases, and disorders are more important objectives than ever.

In the years since the publication of the 1991 report, the country has seen positive changes in the understanding of disability and a growing recognition that health promotion is as an important a goal for people with disabilities as it is for other members of the community. Increasingly, disability is understood not as an intrinsic characteristic of an individual but rather as “a gap between a person’s capabilities and the demands of the environment” (IOM, 1991, p. 1). Healthy People 2010, which is a statement of national health objectives, cited inattention to environmental fac-



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Workshop on Disability in america A new look: Summary and background papers Introduction “Disability is an issue that affects every individual, community, neighborhood, and family in the United States” (IOM, 1991, p. 1). The Institute of Medicine’s (IOM’s) 1991 report Disability in America: Toward a National Agenda for Prevention began with these words. They are as true today as they were 15 years ago. In fact, a demographic imperative—the aging of the baby boom generation—will soon substantially increase the proportion and numbers of Americans in the older age groups that are most at risk of physical and mental impairments, limitations, and disabilities (U.S. Census Bureau, 2004). At the same time, certain trends in other age groups—for example, the increased rates of survival of extremely premature infants and increases in the prevalence of obesity in younger populations—are putting more children and younger adults at risk of disabling conditions. Thus, the promotion of good health, independence, and social integration for people with disabilities and the prevention of disabling injuries, diseases, and disorders are more important objectives than ever. In the years since the publication of the 1991 report, the country has seen positive changes in the understanding of disability and a growing recognition that health promotion is as an important a goal for people with disabilities as it is for other members of the community. Increasingly, disability is understood not as an intrinsic characteristic of an individual but rather as “a gap between a person’s capabilities and the demands of the environment” (IOM, 1991, p. 1). Healthy People 2010, which is a statement of national health objectives, cited inattention to environmental fac-

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Workshop on Disability in america A new look: Summary and background papers tors as a contributor to the neglect of health promotion opportunities for people with disabling conditions (USDHHS, 2000). The World Health Organization’s International Classification of Functioning, Disability and Health (a revision of the 1980 International Classification of Impairments, Disabilities and Handicaps [WHO, 1980]) likewise stresses the critical role of environmental factors in enabling the participation in society of people with physical or mental impairments and activity limitations (WHO, 2001). The 1991 IOM report and a subsequent report, Enabling America (IOM, 1997), emphasized that much disability is preventable. Prevention extends beyond primary prevention (e.g., improving automobile safety) to include the prevention of progressive or secondary health problems (e.g., pressure sores related to spinal cord injury), the development of more effective rehabilitation strategies, the use of appropriate assistive technologies, and the elimination or mitigation of environmental barriers that restrict the participation in society of individuals with disabling conditions. Beginning in late 2004, the IOM began a project to take a new look at disability in America. It will review developments and progress since the publication of the 1991 and 1997 Institute reports. For technical contracting reasons, the new project was split into two phases. During the limited first phase, a committee appointed by IOM planned and convened a 1-day workshop to examine a subset of topics as background for the second phase of project. As was agreed upon with the sponsor of the workshop, the Centers for Disease Control and Prevention (CDC), the topics were methodological and policy issues related to the conceptualization, definition, measurement, and monitoring of disability and health over time; trends in the amount, types, and causes of disability; disability across the age spectrum and in the context of normal aging; and secondary health conditions. The phase-one workshop was held in Washington, D.C. on August 1, 2005. Its participants included researchers, clinicians, social service professionals, policy experts, and consumer representatives and advocates. The meeting agenda and list of participants are included in Appendix A. This report summarizes the workshop presentations and discussions. The background papers prepared for the workshop are included in Appendixes B through O. Some papers were submitted and circulated in advance of the meeting, whereas others were first presented at the meeting. The analyses, definitions, and views presented in the papers are those of the paper authors and are not necessarily those of the IOM committee. Likewise, the discussion summary is limited to the views of the workshop participants. Although the discussion was wide ranging, it did not offer a

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Workshop on Disability in america A new look: Summary and background papers comprehensive review of the topics considered. Consistent with the policies of the National Research Council for workshop summary reports, this report includes no committee conclusions or recommendations. The workshop summary and the background papers will serve as resources for the second phase of the committee’s work. This phase, which began in fall 2005, expands the focus to cover additional topics, including the roles of assistive technologies and universal design, financing issues, and directions for public policy and research. For this work, the National Institute for Disability and Rehabilitation Research and the National Center for Medical Rehabilitation Research have joined the CDC as sponsors. Reflecting the expansion of activity in the project’s second phase, new members have been added to the study committee (see note in Appendix P). Unlike this workshop summary, the committee’s consensus report, which should be released in early 2007, will include recommendations. REFERENCES IOM (Institute of Medicine). 1991. Disability in America: Toward a National Agenda for Prevention. Washington, DC: National Academy Press. IOM. 1997. Enabling America: Assessing the Role of Rehabilitation Science and Engineering. Washington, DC: National Academy Press. U.S. Census Bureau. 2004. U.S. Interim Projections by Age, Sex, Race, and Hispanic Origin. Available online at: http://www.census.gov/ipc/www/usinterimproj/natprojtab02a.pdf. (Last accessed November 22, 2005.) USDHHS (U.S. Department of Health and Human Services). Healthy People 2010: Understanding and Improving Health. 2nd ed. Washington, DC: U.S. Government Printing Office , November 2000. Available online at: http://www.healthypeople.gov/Document/tableofcontents.htm#volume1. (Last accessed November 22, 2005.) WHO (World Health Organization). 1980. International Classification of Impairments, Disabilities and Handicaps: a Manual of Classification Relating to the Consequences of Disease. Geneva, Switzerland: WHO. WHO. 2001. International Classification of Functioning, Disability and Health. Geneva, Switzerland: WHO.