environmental questions. In this chapter, the first section reviews the federal government’s major disability research programs and describes some developments related to these programs in the decade since publication of the IOM report Enabling America (IOM, 1997). The second section discusses a number of current and future challenges of organizing and conducting disability research. The last two sections present recommendations and concluding comments.

Unfortunately, although the committee’s review suggests that progress has been made since publication of the 1997 report, many of the same problems of limited visibility and poor coordination continue to characterize the organization and funding of federal disability research. The enterprise is still substantially underfunded, given the individual and population impact of disability in America, which will grow as the population of those most at risk of disability increases substantially in the next 30 years.

For purposes of this discussion, disability-related research is construed quite broadly to encompass research with the ultimate goals of restoring functioning, maintaining health and preventing secondary conditions, and understanding the factors that contribute to impairments, activity limitations, and participation restrictions.1 This research takes many forms, including classical clinical trials, observational and epidemiological studies, engineering research, health services research, survey research on many topics, other kinds of social science and behavioral studies, the development of measures and research tools, and research training and other capacity-building activities. Investment in each of these areas is important to guide clinicians, public agencies, private organizations, families, and individuals with disabilities in making and implementing choices that promote independence, productivity, and community participation.

1

The 1997 IOM report focused more specifically on rehabilitation research. It defined rehabilitation science as “the study of movement among states [that is, pathology, impairment, functional limitation, and disability] in the enabling-disabling process” (emphasis added) (IOM, 1997, p. 25). Such research involves “fundamental, basic, and applied aspects of the health sciences, social sciences, and engineering as they relate to (1) the restoration of functional capacity in a person and (2) the interaction of that person with the surrounding environment” (p. 25). The report defined rehabilitation engineering research as involving “devices or technologies applicable to one of the rehabilitation states” (p. 249). Disability research, as it is used in the 1997 IOM report, focused on the interaction between individual characteristics and environmental factors that influence whether a potentially disabling condition or impairment actually limits an individual’s participation in society. Consistent with the discussion in Chapter 2, this report uses “disability research” as an umbrella term for research related to impairment, activity limitations, and participation restrictions. It includes but is not limited to rehabilitation and rehabilitation engineering research.



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