The Future of Disability in America (2007) / Chapter Skim
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10 Organization and Support of Disability Research
10 Organization and Support of Disability Research
Pages 287-320
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10 Organization and Support of Disability Research Previous chapters have discussed the scope and magnitude of the issues related to disability that are facing U.S. society.
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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.
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Box 10-1 lists the three major federal agencies that have disability research as their primary missions: the National Institute on Disability and Rehabilitation Research (NIDRR) , the National Center for Medical and Rehabilitation Research (NCMRR)
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Department of Health and Human Services • Other institutes and centers of the National Institutes of Health: National In stitute on Aging; National Institute of Neurological Disorders and Stroke; National Heart, Lung, and Blood Institute; National Institute of Arthritis and Musculoskeletal and Skin Disease; National Institute of Mental Health; National Institute of Deaf ness and Other Communication Disorders; National Eye Institute; and Physical Disabilities Branch • Other components of the U.S. Department of Health and Human Services: Agency for Health Care Research and Quality; Maternal and Child Health Bureau; Substance Abuse and Mental Health Administration; and Office of Disability, Ag ing, and Long-Term Care Policy • Other components of the U.S.
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Status of Federal Disability Research Efforts National Institute on Disability and Rehabilitation Research NIDRR stands out among federal research agencies for its focus on research that addresses the activity and participation dimensions of disability and health. As directed by the U.S.
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lists the emphases or major domains of the agency's research program as • employment, • participation and community living, • health and function, • technology for access and function, and • disability demographics. To build research capacity and innovation, NIDRR supports investigator-initiated projects, fellowships, rehabilitation research training, and small business projects.
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These centers undertake projects in areas identified by the agency, such as community living, employment outcomes, universal design, disability statistics, personal assistance services, children's mental health, rural communities, accessible medical instrumentation, cognitive technologies, wheeled mobility, and workplace accommodations. Some centers focus on specific health conditions, for example, multiple sclerosis and substance abuse.
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Department of Education to DHHS to serve as the foundation for the creation of a new agency, the Agency on Disability and Rehabilitation Research. It argued that the research activity would have a more nurturing environment at DHHS and that the move would make disability and rehabilitation research more visible and would also allow the better coordination of research activities.
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National Center for Medical Rehabilitation Research In 1990, the same year that it passed the Americans with Disabilities Act, the U.S. Congress created NCMRR as a unit within the National Institute of Child Health and Human Development (NICHD)
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Among other things, these programs are intended to attract basic scientists into the rehabilitation arena and promote greater communication between basic scientists and those studying applied rehabilitation topics. It will be important to gauge the impact of efforts such as these on the progress of rehabilitation research development.
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The priorities and portfolios of NCMRR and NIDRR overlap in several areas. For example, both have made significant investments in medical rehabilitation research on spinal cord injuries and traumatic brain injuries, with minimal attempts to coordinate their activities, as described below.
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It noted, however, that rehabilitation research lacked a dedicated application review study section. One benefit of making NCMRR a freestanding NIH institute was that it "could then form one or more special emphasis review committees managed by the Division of Research Grants" (IOM, 1997, p.
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Demands on the VA rehabilitation research program have recently increased as a result of the war in Iraq,10 and the system as a whole is facing significant financial challenges (see, e.g., Edsall [2005]
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As Figure 10-1 shows, the budget for the VA rehabilitation research program was flat during the 1990s but increased from FY 2001 to FY 2005 as part of a general increase in agency spending on research and development. Investigator-initiated research projects account for about 54 percent of the total spending, and research centers account for about 27 percent (Ruff, 2006)
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Because the Disability and Health Team is located within the CDC's NCBDDD, no major CDC center or office currently focuses on disability across the life span as a primary topic. Notwithstanding its location, the Disability and Health Team is concerned with the health of people with disabilities throughout the life span and gives its attention to health promotion, the prevention of secondary conditions, and access to preventive health care, as well as supports for family caregivers.
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The Center for Injury Prevention and Control is funding a study of chronic pain prevention following spinal cord injury or limb loss (CDC, undated)
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As in 1997, the strengths of the Disability and Health Team remain its population-based approach to disability research and its persistence in directing attention to understanding and preventing secondary conditions. CDC overall continues to be a major actor in disability surveillance through the National Center for Health Statistics.
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It is, however, difficult to identify the full array of disability and rehabilitation research funded throughout all the units of NIH. This may become easier in the future.
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(The initiative relied on the World Health Organization's domains of physical, mental, and social health as its organizing framework.) Several examples of important rehabilitation research at NIH outside NCMRR can be cited.
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By way of additional context, NIH lists FY 2005 spending on aging at $2,415 million, spending on attention deficit disorder at $105 million, spending on multiple sclerosis at $110 million, and spending on obesity at $519 million NCMRR accounted for about a quarter of the 2005 NIH rehabilitation research spending. In 1995, NIH identified that it spent $158 million on rehabilitation research.
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When the agency was reauthorized in 1999, the U.S. Congress included, as a priority area for attention, individuals with special health care needs, including individuals with disabilities and individuals who need chronic care or end-of-life health care (Clancy and Andresen, 2002)
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Department of Defense sponsors some research focused on the short- and long-term rehabilitation needs of military personnel, particularly those who have experienced spinal cord injuries, amputations, and traumatic brain injuries. For example, under the label "revolutionizing prosthetics," the Defense Advanced Research Projects Agency has initiated a project to "provide fully integrated limb replacements that enable victims of upper body limb loss to perform arm and hand tasks with [the]
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For example, it may be difficult to coordinate coverage of routine care costs for a study that compares the care provided in a covered inpatient setting 16 In 2000, in response to an executive memorandum that directed Medicare to pay for rou tine patient costs in certain clinical trials, the Health Care Financing Administration (now the Centers for Medicare and Medicaid Services [CMS]
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. One product is the assistive technology report discussed in Chapter 7.
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Within NIH, the role of the NCMRR Medical Rehabilitation Coordinating Committee likewise does not match its title. A 1993 research plan for NCMRR said that the coordinating committee "will work to develop a method of reporting, coordinating and developing medical rehabilitation research initiatives at the NIH" (NICHD, 1993)
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Funding for these grants is, however, insufficient to support ambitious clinical trials. In 2001, NCMRR announced a competition for the Traumatic Brain Injury Clinical Trials Network (NCMRR, 2001)
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The support for translational research mentioned at the end of this section is an example. Although this committee did not have the resources required to update the work of the 1997 IOM committee on research capacity, a recent rehabilitation research summit identified a number of problems that echo many of those identified in the 1997 report and that are likewise consistent with this committee's experience (Frontera et al., 2006)
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It also discussed research on the tertiary prevention of secondary health conditions related to chronic health conditions. Since publication of the 1991 report, research has advanced in these and other areas, including the understanding of risk factors related to the onset of disability at birth and throughout the life span.
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. Researchers have also identified some promising interventions to limit disability in late life, including chronic disease self-management programs, physical activity programs, and multifactor fall prevention interventions (Center for the Advancement of Health, 2000a,b)
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. Although the new legislation is understandable in the larger context of research policy, it places a powerful and discouraging constraint on efforts to give disability and rehabilitation research a greater presence and independence in NIH and in the larger research community as well.
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To strengthen the management and raise the profile of this research, Congress should also consider • elevating the National Center for Medical Rehabilitation Re search to the status of a full institute or free standing center within the National Institutes of Health with its own budget; • creating an Office of Disability and Health in the Directors Office at the Centers for Disease Control and Prevention to promote integration of disability issues into all CDC programs; and • directing the Department of Education to support the National Institute on Disability and Rehabilitation Research in continuing to up grade its research review process and grants program administration. Improving Disability Research Coordination and Collaboration The inadequate coordination of disability research was highlighted in the 1997 IOM report on disability, and it remains a persistent problem today.
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1 THE FUTURE OF DISABILITY IN AMERICA ability research, it is lamentable that it remains difficult to determine even the amount and the type of disability research being conducted by programs scattered across multiple federal departments. It is also dismaying that the ICDR, which has the congressionally established responsibility of coordinating disability research, remains a weak instrument for this purpose.
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The director could also develop a more significant role for the Medical Rehabilitation Coordinating Committee, for example, in promoting research on the environmental and personal factors that contribute to activity limitations and participation restrictions, as well as research on interventions that may alter these factors or their effects. FINAL THOUGHTS Research clearly has a critical role to play in developing and evaluating a national strategy to prevent the primary and secondary health conditions
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These issues present broad and costly challenges to Americans, but a delay in tackling these issues will only exacerbate the problems and increase the costs of future actions. Evidence continues to grow that disability is not an unavoidable consequence of injury and chronic disease but results, in part, from actions that society takes -- both in the public arena and in commerce and other private domains.
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