The 1991 Institute of Medicine (IOM) report Disability in America: Toward a National Agenda for Prevention identified disability as a significant social, public health, and moral issue that affects every individual, family, and community across America. This seminal volume articulated a series of comprehensive changes necessary to prevent disability in American society. Its recommendations included, for example, the development of new public and private leadership in disability prevention, the adoption of a unified conceptual framework to guide collaborative research, a national disability surveillance system, a comprehensive research program, coordinated approaches to delivering health and social services, and professional and public education to promote enlightened attitudes about disability. In 1997, the IOM followed with a second report, entitled Enabling America: Assessing the Role of Rehabilitation Science and Engineering, which critically evaluated the current federal programmatic efforts in science and engineering related to rehabilitation and disability. The 1997 IOM report called attention to the major shortcomings in the organization and administration of federal research programs pertinent to disability and rehabilitation. In doing so, it set forth a series of specific recommendations for more research, improved coordination, and a need for enhanced visibility of rehabilitation-related research within federal research programs.

Beginning in the fall of 2005, a dedicated group of clinicians, researchers, and consumers have collaborated in reviewing the nation’s progress on disability since 1991 and 1997. As chair, I have had the privilege of work ing with an outstanding group of individuals who, despite their diverse backgrounds and disparate perspectives, listened, probed, and discussed to reach a consensus around our major findings and recommendations presented in this report. Let me thank each of them, along with our IOM staff, particularly Marilyn Field, the project director, who did an outstanding job of guiding us in our work. I also wish to extend my gratitude to numerous other individuals and organizations (listed in Appendix A) who provided us with information, background papers, and other assistance in our work.

Our conclusions, as detailed in this report, entitled The Future of Disability in America, document the sobering reality that far too little progress has been made in the last two decades to prepare for the aging of the baby boom generation and to remove the obstacles that limit what too many people with physical and cognitive impairments can achieve. Disturbingly, many of the major recommendations contained in the two earlier reports have received little or no serious consideration, and they remain as germane today as they were in 1991 and 1997. This report therefore reiterates several still pertinent goals from the earlier reports and offers new recommendations that, if enacted promptly, could create a future in which Americans of all abilities and ages can participate fully in society.

After reviewing the state of disability in America, the committee concluded that although important progress has been made over the past 17 years in our understanding of disability, its causes, and strategies that can prevent its onset and progression, society must do more now before a crisis is upon us. The chapters in this report cover a broad range of critical topics, including the prevention of secondary conditions, the role of technology and universal design, selected issues in health care organization and financing, as well as the environmental context of disability.

Our society faces several fundamental challenges, which are highlighted within this report. Will this country commit to actions that will limit the progression of physical and mental impairments into disabilities and prevent the development of secondary conditions? Will society provide affordable and accessible health care and technological aids that promote good health and maximize societal participation for people with disability? Will society reduce environmental barriers for people with existing impairments? And will society demand that all levels of government invest in more research, the improved coordination of research, and the need for the enhanced visibility of disability-related research within our public research programs? The answers to these questions will undoubtedly define the future of disability in America and leave lasting legacies for future generations.

The poet Archibald MacLeish once wrote, “America was always promises.” There is still much work to do, but never have America’s promises been within closer reach for people with disabilities, if only we harness the innovative spirit of American science and industry, promote and assist compliance with existing civil rights legislation, and remove outdated restrictions in public and private health plans. Working together, I know that we can transform the future of disability in America.

Alan M. Jette, Chair

April 2007