10
Organization and Administration of Federal Research Programs

As described in Chapter 1, the U.S. government has a long tradition of establishing programs designed to aid Americans with disabling conditions. Today, more than 30 distinct federal programs exist to address either directly or indirectly the needs of people with disabling conditions. These needs have gained renewed national attention in recent years, partly in response to the Americans with Disabilities Act of 1990. One aspect of this renewed attention has been a focus on rehabilitation-related research.

As part of its charge from Congress, the committee reviewed and assessed the individual efforts of the major federal programs that support rehabilitation-related research, as well as the combined, overall federal effort. A series of options for improving the federal organization and administration of rehabilitation research was developed and is presented in this chapter as examples of what the committee considered in its deliberations. The chapter concludes with the committee's recommendations for improving the overall effort.

Scope of Federal Research Efforts

Federal expenditures in programs whose missions emphasize rehabilitation-related research are presented in Figure 10-1, showing that the National Institute on Disability and Rehabilitation Research (NIDRR) has the largest single program—accounting for 48 percent ($70 million) of the total ($147 million). Twenty-three percent ($32 million) of the funds are spent by the U.S. Department of Veteran Affairs (VA). The National Cen-



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--> 10 Organization and Administration of Federal Research Programs As described in Chapter 1, the U.S. government has a long tradition of establishing programs designed to aid Americans with disabling conditions. Today, more than 30 distinct federal programs exist to address either directly or indirectly the needs of people with disabling conditions. These needs have gained renewed national attention in recent years, partly in response to the Americans with Disabilities Act of 1990. One aspect of this renewed attention has been a focus on rehabilitation-related research. As part of its charge from Congress, the committee reviewed and assessed the individual efforts of the major federal programs that support rehabilitation-related research, as well as the combined, overall federal effort. A series of options for improving the federal organization and administration of rehabilitation research was developed and is presented in this chapter as examples of what the committee considered in its deliberations. The chapter concludes with the committee's recommendations for improving the overall effort. Scope of Federal Research Efforts Federal expenditures in programs whose missions emphasize rehabilitation-related research are presented in Figure 10-1, showing that the National Institute on Disability and Rehabilitation Research (NIDRR) has the largest single program—accounting for 48 percent ($70 million) of the total ($147 million). Twenty-three percent ($32 million) of the funds are spent by the U.S. Department of Veteran Affairs (VA). The National Cen-

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--> National Institute on Disability and Rehabilitation Research (NIDRR) $69,625,000 U.S. Department of Veterans Affairs (VA) 32,398,000 National Center for Medical Rehabilitation Research (NCMRR) 11,707,000 Centers for Disease Control and Prevention (CDC) 9,500,000 National Science Foundation (NSF) 6,582,000 Other includes: 13,100,000 Architectural and Transportation Barriers Compliance Board 300,000 Office of Disability, Aging, and Long-Term Care Policy 5,000,000 Social Security Administration 5,000,000 U.S. Department of Housing and Urban Development, Office of Policy Development and Research 100,000 U.S. Department of Transportation 2,700,000 FIGURE 10-1 Traditional view of federal spending in rehabilitation-related research. ter for Medical Rehabilitation Research (NCMRR) supports 8 percent ($12 million) of the federal spending on rehabilitation-related research. The Centers for Disease Control and Prevention (CDC) and the National Science Foundation (NSF) support 7 percent ($9.5 million) and 5 percent ($6.5 million), respectively. Five other federal agencies and programs with research activities focused specifically on rehabilitation spend the remaining nine percent of the federal government's rehabilitation-related research funds (the U.S. Department of Housing and Urban Development [HUD], the Office of Disability, Aging and Long Term Care of the U.S. Department of Health and Human Services [DHHS], the Social Security Administration [SSA], the U.S. Department of Transportation, and the Architectural and Transportation Barriers Compliance Board).

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--> Other federal programs support and conduct research that is relevant to rehabilitation. Perhaps most notably is the NIH activity outside of NCMRR that is focused on a variety of areas, but that sometimes includes aspects of rehabilitation-related research (see NIH Research Priorities and Funding, below). In addition, but on a smaller scale, the National Aeronautics and Space Administration's work in engineering and space technology has had spin-offs in technology transfer to products for people with disabling conditions, although it does not directly fund rehabilitation research. The U.S. Department of Energy also supports projects (e.g., in hearing, visual modalities, and computer technology) with potential applications for people with disabling conditions. The net result is a highly diverse, but potentially complementary set of rehabilitation-related federal research activities that includes biomedical research, technological development, engineering, demonstration projects, outreach, and training. In reviewing the scope of the federal programs, it is also important to consider congressional oversight of the programs. The numerous federal programs are authorized by various laws and are in the jurisdictions of different congressional committees. The largest rehabilitation-related federal research programs, however, i.e., NIH and the U.S. Department of Education, are both under the jurisdiction of the Labor, Health and Human Services and Education Subcommittee. Other programs have separate committees; for example, the VA Rehabilitation Research and Development Service is under the jurisdiction of the Veterans' Affairs Committee, and the Social Security Administration's efforts are under the jurisdiction of the Labor, Health and Human Services and Education Subcommittee. In the U.S. House of Representatives, the programs are similarly dispersed. All programs undergo separate authorization and appropriations processes conducted by different committees in both bodies. In assessing the overall federal effort, the committee limited its review to the five largest programs that focus specifically on rehabilitation-related research (those with research budgets of more than $5 million, see Figure 10-1): NIDRR, VA, NCMRR, CDC, and NSF. Rehabilitation-related research at NIH, in addition to that which is supported by NCMRR, was also assessed. The following section provides a brief description and assessment of each of these. Major Agencies Involved in Rehabilitation-Related Research As mentioned above, numerous federal agencies have authority for and are conducting research in the field of rehabilitation science and engineering. To evaluate the major trends in federally funded research in rehabilitation science and engineering, the committee examined five agen-

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--> cies in greater detail. The following summary of the committee's findings includes a brief description of the each agency's mission, research priorities, and current funding level, and an assessment of the strengths and weaknesses of each agency. Appendix A details the actions that the committee took to collect information from the agencies (and other sources), and Appendix B contains a summary of relevant information for federal programs involved in rehabilitation-related research, as well as other programs that provide services, ensure compliance, or collect data. National Institutes of Health NIH is organized into 25 separate Institutes, Centers, and Divisions (ICDs), each with a specific focus on either a disease, an organ system, or a profession (e.g., cancer, musculoskeletal disorders, and nursing research, respectively). Disability and rehabilitation research is a part of many ICDs, but it is the central focus of only one, NCMRR, which is part of the National Institute of Child Health and Human Development (NICHD). The following sections discuss the overall effort of NIH (ICDs other than NCMRR) and NCMRR specifically. Overall Effort of NIH The goal of all NIH research is to acquire new knowledge to help prevent, detect, diagnose, and treat disease and disability, from the rarest genetic disorder to the common cold. NIH works toward that mission by conducting research in its own laboratories; supporting the research of nonfederal scientists in universities, medical schools, hospitals, and research institutions throughout the country and abroad; helping in the training of research investigators; and fostering communication of biomedical information. Research Priorities and Funding To assess rehabilitation-related research at NIH, the committee collected abstracts from two sources: the Computer Retrieval of Information on Scientific Projects (CRISP) and the Institutes themselves (see Appendix A). As presented in Table 10-1, CRISP provided the committee with 764 abstracts (representing $114 million); the Institutes provided the committee with 973 abstracts (representing approximately $158 million). All 1,480 abstracts were reviewed to determine (1) relevance to rehabilitation, (2) state of the enabling-disabling process that was examined, and (3) type of experimental subject. An overlap of 17 percent (i.e., the percentage of total number of abstracts that were collected from both sources) was identified and duplicates were eliminated from the analysis, as were projects that were determined to be

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--> TABLE 10-1 Medical Rehabilitation-Related Research at the National Institutes of Health ($thousands), 1995 Institute Reporteda CRISP Calculatedb National Cancer Institute $23,512 $8,394 $20,050 National Heart, Lung, and Blood Institute 17,831 20,382 36,238 National Institute of Dental Research 9,559 930 8,193 National Institute of Diabetes and Digestive and Kidney Diseases 5,057 2,483 5,083 National Institute of Neurological Disorders and Stroke 17,742 19,089 30,337 National Institute of Child Health and Human Development (National Center for Medical Rehabilitation Research) 15,459 14,020 19,206 National Eye Institute 3,293 3,821 5,769 National Institute on Aging 20,790 25,715 22,650 National Institute of Arthritis and Musculoskeletal and Skin Diseases 13,670 6,897 17,095 National Institute of Deafness and Other Communication Disorders 19,941 9,429 27,466 National Center for Research Resources 9,504 212 7,041 National Institute of Nursing Research 1,680 2,619 4,130 National Institute of Allergy and Infectious Diseases   825 302 National Institute of General Medical Sciences 2,062 2,029   National Institute of Environmental Health Sciences 2,402 612   Total 158,038 113,991 206,201 a Values reported by Medical Rehabilitation Coordinating Committee August 29, 1996, in response to IOM committee request to NIH Director Harold Varmus. b Values calculated by IOM committee according to review of individual abstracts. non-rehabilitation related. Center grants were considered separately because rehabilitation was a minor component of their activities. The resulting total funding for individual rehabilitation-related research projects was $206 million. Although the committee's analysis (see Appendix A) indicated that NIH supported considerable research outside of NCMRR, that was determined to be relevant, the true focus of these activities lay elsewhere. Although research priorities are established within individual ICDs, the analysis indicated the trends within NIH as a whole. Figure 10-2 shows that 12 percent (based on expenditures) of the abstracts were not related to rehabilitation science and engineering, 37 percent included a focus on rehabilitation science, another 39 percent focused on a single state of the enabling-disabling process (illustrated in Chapter 3), and 12

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--> Relevance Category Amount Funded Number of Projects Percent Funding Rehabilitation science $87,116,381 448 37 Rehabilitation engineering $27,693,617 160 12 Rehabilitation related (single state) $91,390,968 470 39 Not related $29,091,590 184 12 Totals $235,292,556 1,262 100 FIGURE 10-2 Percentage of research funding (not including center grants, which are summarized in Table 10-2) in four categories of relevance to rehabilitation research for the fiscal year 1995 program at the National Institutes of Health. Rehabilitation science: Projects that address movement among states in the enabling-disabling process. Rehabilitation engineering: Projects that address devices or technologies applicable to one of the rehabilitation states. Rehabilitation related (single state): Projects that address one rehabilitation state exclusively. Not related: Projects that do not clearly address any rehabilitation state. For additional information, see Appendix A. percent involved rehabilitation engineering.1 Within these categories of relevance, Figure 10-3 shows how many of the abstracts included a focus on the individual states of the enabling-disabling process. As expected, NIH research had a focus on pathology and impairment, as is appropriate with NIH's mission. A great majority of the single-state projects focused on pathology, and much of the identifiable rehabilitation-related research 1   See Appendix A for details of the committee's analysis.

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--> FIGURE 10-3 Number of abstracts within each category of relevancea that address the specific states of the enabling-disabling processb for Fiscal Year 1995. NOTE: Many abstracts address multiple states. For additional information, see Appendix A. a Rehabilitation science: Projects that address movement among states in the enabling-disabling process. Rehabilitation engineering: Projects that address devices or technologies applicable to one of the rehabilitation states. Rehabilitation-related (single state): Projects that address one rehabilitation state exclusively. Not related: Projects that do not clearly address any rehabilitation state. b No disabling conditions: Research that addresses the state of function or use of subjects with no disabling conditions to investigate mechanisms that are potentially relevant to assessing and treating disabling conditions. Pathology: Research that examines changes of molecules, cells, and tissues that may lead to impairment, functional limitation, or disability, distinguished from pathology by manifestation at organ or system level. Impairment: Research that analyzes changes in particular organs, systems, or parts of the body. Impairment is distinguished from functional limitation due to emphasis on organ and components instead of whole body. Functional limitation: Research that examines functional changes involving the entire subject, manifested by task performance. Disability: Research that focuses on the interaction of the subject with and in the larger context of the physical and social environment.

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--> TABLE 10-2 National Institutes of Health Rehabilitation Funding Outside of Individual Research Projects Activity Amount Funded Number of Projects Center grants $97,007,389 94 Community clinical oncology projects $28,872,175 73 Total $125,879,564 167 does not focus purposefully on rehabilitation. Approximately 17 percent of the NIH grants that the Institutes identified as being related to rehabilitation research involved materials, tissues, or subjects with no disabling conditions, as opposed to subjects in other rehabilitative states. In contrast, only one percent of the rehabilitation science projects dealt with subjects with no disabling conditions. In addition to individual research projects, broader-based center grants and community clinical oncology programs that also include rehabilitation-related activities receive funds amounting to $125 million dollars (see Table 10-2). Strengths and Weaknesses There are many strengths in the rehabilitation-related research at NIH. As the center for biomedical research in the federal government, NIH maintains a high level of critical review that ensures high-quality research. In addition, the multiple perspectives of the many Institutes provide for significant potential synergy in addressing the array of rehabilitation-related issues. The drawback is that the overall effort is not well defined or coordinated, and rehabilitation per se is not a priority across all Institutes. Although a special emphasis panel on geriatrics and rehabilitation medicine was established in the Division of Research Grants to review rehabilitation-related research project applications, rehabilitation science still lacks a study section of its own. NIH has a coordinating body for rehabilitation-related research in the Medical Rehabilitation Coordination Committee (MRCC) (see the NCMRR discussion below). The coordinating committee was established to facilitate communication among the Institutes engaging in rehabilitation-related research, but meaningful coordination seems to be lacking. The coordinating committee depends on the Institutes to conduct and report their efforts but has no effective mechanism for tracking these efforts independently or raising priorities within other Institutes. The result is a discordant effort in which even the definitions of rehabilitation-related research vary among the Institutes (see Appendix A). Finally, although NIH now has a center for such research in NCMRR, rehabilitation-related research seems to receive relatively low priority

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--> *All rehabilitation related NIH research ($164M) is 1.54% of total NIH budget ($12 billion) FIGURE 10-4 Funding levels within the National Institutes of Health: Comparison of funding for rehabilitation-related research with the total budgets for selected institutes, fiscal year 1996 estimates. among the Institutes. Rehabilitation, although arguably one of the nation's most pressing needs, receives significantly less attention from NIH than other national health concerns (see Figure 10-4). Although NIH provides more than half of the gross federal effort in rehabilitation-related research, this seems to be more a result of the size of the aggregate budget than any special attention on the part of NIH. National Center for Medical Rehabilitation Research NCMRR was established within NIH by legislation passed in 1990 (Public Law 101-613). The mission of the Center, a component of NICHD, is to ''conduct and support research and research training, the dissemination of health information, and other programs with respect to the rehabilitation of individuals with physical disabilities resulting from diseases or disorders of the neurological, musculoskeletal, cardiovascular, pulmonary, or any other physiological system" (Public Law 101-613). Beyond this, NCMRR strives to foster development of the scientific knowledge

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--> needed to enhance the health, productivity, independence, and quality of life of people with disabling conditions. A primary goal of the Center is to bring the health-related problems of people with disabling conditions to the attention of the best scientists in the United States in order to capitalize on the advances occurring in the biological, behavioral, and engineering sciences. NCMRR also has responsibility as a federal coordinating body. Like the Interagency Committee on Disability Research (ICDR) of NIDRR, the MRCC, with the director of NCMRR as its chair, is authorized by legislation to "review and assess Federal research priorities, activities, and findings regarding medical rehabilitation research, and shall advise the Director of the Center and the Director of the Institute on the provisions of the Research plan" (Public Law 101-613). Its goals have actually been more modest in scope, choosing to work within NIH rather than across federal agencies. MRCC strives to foster communication among Institutes that have a significant interest in disability issues and rehabilitation research, but has met with limited success due to limitations in support and visibility. Research Priorities and Funding NCMRR funded $15 million in research during fiscal year 1995. Between 17 and 23 percent of the NCMRR budgets between 1993 and 1996 were devoted to research training and career development. This level of support for research training is considerably higher than the norm for most components at NIH, but it is consistent with the emphasis on expanding research capacity that is called for in the NCMRR's research plan. The variety of funding mechanisms used by NICHD is used by NCMRR except for cooperative agreements, funding for clinical trials, and center grants. Centers tend to be expensive activities and have not been funded by NCMRR because overall budget restrictions have dictated that priority be given to less costly forms of research support. Supporting appropriately organized centers is a future priority of NCMRR, depending on the availability of funds. As the focal point for rehabilitation-related research within NIH, NCMRR was of particular interest to the committee. NCMRR funded rehabilitation science to a slightly greater degree (43 percent of its research budget) than did NIH as a whole (37 percent), according to the committee's analysis. Likewise, rehabilitation engineering received 27 percent of NCMRR's budget as opposed to 12 percent from NIH. Many of the unrelated projects (22 percent) in NCMRR were training grants, and therefore not considered research in this definitional scheme. The emphasis of NCMRR's research tended to focus on pathologies and impairments (see Figures 10-5 and 10-6); 20 percent of the research awards address disability as defined in the committee's conceptual model (see Chapter 3).

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--> Relevance Category Amount Funded Number of Projects Percent Funding Rehabilitation science $6,256,000 39 43 Rehabilitation engineering $3,949,000 27 27 Rehabilitation related (single state) $1,153,000 17 8 Not related $3,266,000 27 22 Totals $14,624,000 110 100 FIGURE 10-5 Percentage of research funding (not including center grants) in four categories of relevance to rehabilitation research for the fiscal year 1995 program at the National Center for Medical Rehabilitation Research. Rehabilitation science: Projects that address movement among states in the enabling-disabling process. Rehabilitation engineering: Projects that address devices or technologies applicable to one of the rehabilitation states. Rehabilitation related (single state): Projects that address one rehabilitation state exclusively. Not related: Training grants and projects that do not clearly address any rehabilitation state. For additional information, see Appendix A. Strengths and Weaknesses As part of NIH, NCMRR is influenced by the predominant medical orientation of NIH. This is considered by some as a strength and by others as a potential weakness. The benefit is that NIH ensures rigorous review and a scientific basis for research findings. On the other hand, critics contend that the medical theory of disability is deterministic and frequently loses sight of the person. Although the Research Plan for the National Center for Medical Rehabilitation Research (NCMRR, 1993) focuses on the person with a disabling condition and on how that person's functional limitations are affected by interacting biological, personal, and societal forces, most emphasis seems to be on the biological underpinnings of

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--> Conclusions and Recommendations The current organization and administration of federal programs that support research in rehabilitation science and engineering are such that each program has a unique, worthwhile, and complementary mission. CDC investigates prevention and secondary conditions, NSF and NCMRR research basic engineering and medical rehabilitation, respectively, NIDRR focuses on disability and the whole person in the environment, and VA is able to tailor its research agenda to the needs of its constituents. This represents a sound spectrum of rehabilitation research. In general, weaknesses in the spectrum are not due to inappropriate priorities or other problems within the programs themselves, but rather to a general insufficiency in the magnitude of the overall program of research, its limited visibility, and lack of effective coordination of the overall constellation of programs. Thus, correcting this situation will require additional research activities, greater visibility within the administrative structure, and improved coordination. Any potential reorganization or restructuring of the rehabilitation science and engineering activities of the federal government should be designed to achieve these objectives and also pass the test of implementability, with an eye towards long term, effective function for the foreseeable future. Due consideration was given to a spectrum of options for improving the current situation and achieving the objectives of expanded research, enhanced visibility, and improved coordination. Of the many options considered, three of which are described above, Option 3 was determined to be the most reasonable, appropriate, and effective one for addressing the identified needs for improved coordination and enhanced visibility for federal research in rehabilitation science and engineering. The committee therefore recommends that this option be implemented as a means of enhancing the overall federal effort in rehabilitation research and improving the health, quality of life, and productivity of people with disabling conditions (see Recommendation 10.1 below). RECOMMENDATION 10.1 The committee recommends that the NIDRR program of activities and its annual appropriation of approximately $70 million should be moved from the U.S. Department of Education to HHS and serve as the foundation for the creation of a new Agency on Disability and Rehabilitation Research (ADRR). ADRR would assume the tasks that were formerly assigned to the Interagency Committee on Disability Research (ICDR) and be given enhanced authority through review of disability and rehabilitation research plans and control of funding for interagency collaboration. To further support and enhance the overall federal effort, all major

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--> programs in disability and rehabilitation research should be elevated within their respective agencies or departments. There would be immediate benefits to the improvement of the quality and coordination of rehabilitation-related research from an administrative relocation of NIDDR to HHS. Expanding the overall research effort, however, will require additional funding. Table 10-4 shows what an expanded research effort such as this might cost. Move NIDRR to Create ADRR The major purposes of moving NIDRR are threefold: first, to explant it administratively to a more nurturing and supportive environment; secondly, to raise the visibility of disability and rehabilitation research as important health issues; and lastly to serve more effectively as the core of an interagency coordinating body. In serving as the basis for a new agency, the move would provide an opportunity to develop a better coordinated federal effort with enhanced visibility and well-defined, complementary goals for the overall effort. Moving NIDRR to DHHS and elevating it to an agency-level program (ADRR) would correct many of the deficiencies and problems that have been described above, and improve the overall productivity of federal research in rehabilitation science and engineering. Moving NIDRR out of the Department of Education is an important component of the recommended changes to improve the overall federal effort. As indicated by the GAO in 1989, the U.S. Department of Education has not provided adequate resources to the development of NIDRR (GAO, 1989), and seems unlikely to do so in the future. Such things as the lack of consistent announcement dates for grant competitions and ad hoc review panels with only a few members prevent or at best interfere with high-quality reviews. The constant change in peer reviewers does not allow applicants to receive constructive criticism from the review process or the opportunity to respond to the same reviewers. Hence, investigators are discouraged from applying. Administrative locations other than DHHS were considered by the committee, but the most reasonable choice seemed to be within DHHS, at the level of the Administration on Aging. There is also an historic precedent in that the origins of NIDRR reside in the former U.S. Department of Health, Education, and Welfare. But more importantly, and among other reasons, being located in DHHS would facilitate cross-fertilization with other relevant programs and activities, such as the Administration on Aging, the Bureau of Maternal and Child Health, the Administration on Developmental Disabilities. Moving to DHHS, as opposed to creating an independent agency, would

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--> TABLE 10-4 Major Federal Programs in Disability and Rehabilitation-Related Research Showing the Organization of the Proposed New ADRR in DHHS and Two Levels of Funding to Enhance the Overall Federal Effort     $100 Million of Additional Funds $200 Million of Additional Funds Agency Current Funds New Funds New Totals New Funds New Totals U.S. DEPARTMENT OF HEALTH AND HUMAN SERVICES           Administration on Disability and Rehabilitation Research (new agency) $70* $52.5 $123 $105 $175 I. Coordination-Linkage Division 0 25 25 35 35 a. Interagency committee and subcommittee           b. Multiple agency projects           c. Rehabilitation resource support centers           II. Disability and Rehabilitation Research Division 39 15 54 39 78 a. Rehabilitation research, including centers and field-initiated research of issues such as employment, education, personal assistance services, parenting, policy, independent living.           b. Disability studies           III. Engineering and Environmental Research Division 22 7 29 22 44 a. Assistive technology and engineering, including centers and field-initiated research           b. Universal design, including mass transportation and Americans with Disabilities Act compliance           IV. Training and Career Development Division 3 2.5 5.5 3 6 a. Allied health and engineering           b. Services training           c. Recruitment of scientists with disabling conditions          

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--> V. Information Integration and Dissemination Division 6 3 9 6 12 a. Information integration           b. Dissemination           National Institutes of Health (NCMRR) $15 $11.3 $26 $23 $38 Thematic program projects for six priority areas           Develop clinical trials of new therapies (not cures) that improve health status and reduce secondary conditions, and coordinate with that of ADRR Centers program           Centers for Disease Control and Prevention $9 $6.8 $16 $14 $23 Current programs           Establish population-based studies of people with disabling conditions their needs for services and assistive technologies, and the effects of changing national, state, and local policies on participation by people with disabilities in major life activities, including their health costs and demographics           Establish population-based surveillance systems for monitoring the incidence and impact of secondary conditions           Develop and evaluate community-based interventions to reduce the incidence and impact of secondary conditions and promote the independence and productivity of people with disabling conditions.           Fund longitudinal studies on disability (e.g., National Health Interview Survey-Disability Supplement expanded)           Fund the development of a common terminology for the field           U.S. DEPARTMENT OF VETERAN AFFAIRS $32 $24 $56 $48 $80 NATIONAL SCIENCE FOUNDATION $7 $5.3 $12 $11 $18 TOTAL $133 $100 $233 $200 $333 * Current NIDRR funding.

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--> also obviate the need to create a large workforce to handle the support functions of personnel, purchasing, and legal and public affairs, all of which would already be available in the department. Moreover, other agencies within DHHS (e.g., NIH and CDC) already perform the majority of disability and rehabilitation-related research. To enhance its coordinating authority, ADRR would review plans for research in the following year submitted by all agencies with significant efforts in rehabilitation science and engineering. Such an evaluative function would allow ADRR to help ensure quality in each agency's research, eliminate duplication, identify priorities, and sustain a national agenda. ADRR would also maintain a database of projects and activities. Special efforts should be directed to the development of a common database for rehabilitation science and engineering that would facilitate monitoring, coordination, and priority-setting among the programs. Part of ADRR's support could come from a set-aside fund (e.g., one percent) from each of the major programs that support research in rehabilitation science and engineering. These funds would be used to enhance coordination and interagency participation, as well as collaborative research activities. ADRR should be provided with the authority to award research grants, contracts, cooperative agreements, and research and development with a rehabilitation science or engineering focus. Eligible entities would include universities, rehabilitation facilities, nonprofit organizations, and for-profit corporations. ADRR should also have the authority to award supplemental research funds. All award announcements should have proposal receipt dates that coincide with those of NIH, which will permit applicants to plan their research activities better. This committee recognizes the strengths of center grant research and recommends continued support by ADRR. The committee further recommends, however, that ADRR enhance field-initiated research projects, environmental modifications training for people with disabling conditions and their families, and training for health and engineering personnel. Finally, ADRR staff should be grounded in relevant fields of rehabilitation science and engineering. Sufficient staffing, salary, equipment, and expenses must be provided to permit fulfillment of the defined missions. Preferably, ADRR would be organized in a manner that reflects the major substantive activities of the program: coordination of federal research efforts, research, education, and dissemination. This would facilitate the implementation of a mission that focuses on substantive, multidisciplinary activities as opposed to those of the separate, individual disciplines. The following section describes the committee's view on some of the details of the organization of the new agency.

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--> Organization of ADRR ADRR would have five divisions that would address the following areas: coordination and linkage; rehabilitation and disability research; engineering and environmental research; training for researchers and people with disabilities; and integration of rehabilitation-related research, practice and technology information. The sections that follow discuss each of these in detail. Coordination and Linkage Division The coordination activities of this division would take on the responsibilities of ICDR currently assigned to NIDRR, but the division would have increased authority to fund collaborative activities. If NIDDR is moved to DHHS to create ADRR, but no additional funding is provided (e.g., one percent set-aside from other agencies), then support would need to be drawn from other internal programs for this purpose. Interagency Committee The budget for these activities would need to cover staff salary, database management, conferences, cross-agency staff training and interagency committee meetings. The interagency committee would be composed of rehabilitation experts outside government, representatives of the major government funding agencies, major foundations funding rehabilitation-related research, leaders of organizations that provide services to people with disabling conditions, and people with potentially disabling conditions who represent major constituencies. Multiple-Agency Projects A second branch of this division would support linkage projects that cross the boundaries of the missions of the various agencies. The projects would be on designated topics recommended by the interagency committee. Each participating agency would be required to dedicate some funds to the projects. Foundations and for-profit companies would be encouraged to cofund projects. Funding for these linkage activities would provide incentives for government agencies to cooperate in planning directed research activities, reduce costs of recruiting separate populations for studies of the same condition at different times in the course of the condition, and allow for more detailed cross-environmental studies of similarities and differences in societal level problem solving. The activities ideally funded at a level of approximately $1 million, would be supported through an interagency transfer of funds to a designated lead agency that would be responsible for managing the award. Rehabilitation Resource Support Centers A second type of linkage pro-

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--> gram would be funded through a third branch of this division of ADRR and would provide funds to meet deficits in the study of the person-environment interaction. There is a need to support rehabilitation-related research projects that involve community sites that have not been traditionally funded through government agencies (e.g., in the cultural settings of minority groups, rural communities, inner cities, and home and at work). Moving from a laboratory-based approach to one based in communities will require new approaches that have little current research support. By using a variety of human assistance resources and physical environmental modifications, such studies will provide answers to questions regarding the participation by people with disabling conditions in major life activities. The idea would be to empower people with disabling conditions by using results based on scientific studies of what optimal conditions are best for each of life's major activities. The funds for these activities would provide support for community-based, longitudinal studies. The funds would be awarded through a peer reviewed, competitive process that would be managed by ADRR staff. Rehabilitation and Disability Research Division The research on disability and rehabilitation currently funded by NIDRR would continue to be funded, but it would be funded by ADRR and would be managed by ADRR staff. Initially, no currently funded activities would be terminated and currently funded activities would continue through the existing award period. The program would be divided into two broad branches: rehabilitation science and disability studies. Rehabilitation Science The rehabilitation science branch could be organized by topic areas rather than by the type of funding mechanism (i.e., via centers and field-initiated research). The mechanisms used to fund these activities could include special-emphasis projects, centers of excellence in areas of rehabilitation (such as Model Spinal Cord Injury Centers), research program grants, research and demonstration projects, new investigator awards, small grant awards, minority investigator awards, and awards to people with disabling conditions. The mechanisms would support work in topic areas by using a variety of funding mechanisms that could be awarded to sites at various locations. Thus, this branch could have several sections for programming and managing topics including but not limited to engineering, health and fitness, employment, transportation, housing, independent living, community integration, personal assistant services, and policy. The current effort in investigator-initiated research, currently funded at a level of approximately $39 million, is inadequate to meet the expansion to an inclusive approach to

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--> rehabilitation and disability recommended by this committee. It should be a priority to increase this effort. Disability Studies A significant portion of the funding for this division of ADRR would be apportioned to support the field of disability studies. The committee encourages the development and support for the examination of people with disabling conditions and cultural response through a variety of lenses, including but not limited to economics, political science, religion, law, history, architecture, urban planning, literature, and fine arts. Engineering and Environmental Research Division The activities of this committee revealed a significant weakness in the overall research activities related to rehabilitation engineering and environmental modification. Notably, the lives of people with disabling conditions can be enhanced through environmental strategies, including assistive technology and universal design, among others. Assistive Technology and Engineering Few resources are allocated to studying the development, deployment, and use of assistive technologies. The coordination of these resources is minimal. The major source of current research effort, Rehabilitation Engineering Research Centers, which are currently funded through NIDRR, would continue to be funded for the existing award period. Again, the topics for funding would provide the organizational structure for the ADRR rather than the funding mechanism (e.g., Rehabilitation Engineering Research Centers). The topics in this branch of ADRR would include robotics, orthotics, prosthetics, wheelchairs, communication devices, visual aids, and others. Universal Design A second branch in this division would fund those projects that are directed at modifying the built environment and assessing the natural environment for access. This branch would fund studies of universal design, special needs environments, mass transit vehicles (e.g., lightrail, passenger trains, airplane seating, and buses) and the structural and product engineering aspects of technologies. The branch would foster a Framingham-type study for several site examinations of the influence of changes in environmental access and accommodation mandated by the Americans with Disabilities Act of 1990 and how they change the participation of people with potentially disabling conditions in major life activities. Training and Career Development Division This division would focus on three different areas of training. Not only would it include traditional career development awards to attract scientists and engineers to

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--> rehabilitation science and engineering but it would also provide training to caregivers and would bring scientists and engineers with disabling conditions into the field of rehabilitation-related research. Allied Health and Engineering This branch would provide funding for training in sciences and engineering necessary for conducting research in rehabilitation-related topics that are not covered by NIH training programs. Support would be provided for early career development, midcareer transition and later career special summary projects. Several areas of research that have received little support for training personnel to conduct research would be funded by this branch (see Chapter 9). Services Training A second branch within this division would provide training funds for professional development for those who provide service to people with disabling conditions. These professions include but are not limited to Occupational Therapy, Physical Therapy, Psychology, Physical Medicine and Rehabilitation, rehabilitation nursing, orthotics, and prosthetics. Additional efforts should be made to expand this program to train personal assistance providers, urban planners, architects, environmental specialists, lawyers, tax consultants, and other professionals who are beginning to develop programs for enhancing the lives of people with potentially disabling conditions. Recruitment of Scientists with Potentially Disabling Conditions The third branch of this division would provide funding for training people with potentially disabling conditions and their families in the skills needed to understand, conduct, and participate in research. The funds would be provided as training supplements to existing grants, targeted fellowships, specialized career development grants, and small grants to advocacy organizations for short-term training in understanding and using research findings. Information Integration and Dissemination Division Information Integration A one-time contract would be awarded to integrate the existing literature databases and to develop links to and from existing databases (e.g., NARIC, ERIC, and MEDLINE). The award would be in the range of $1 million to $2 million. The information division staff would then maintain the system. Dissemination Information dissemination activities would be managed through this division. This would include making existing data accessible to the public, and the information would include publications

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--> and material pertinent to disability issues, as well as the results of federally funded research projects and clinical practice guidelines. Elevate Other Existing Programs The fact that focal points for most the rehabilitation research currently reside at the lower administrative levels—that is, programs, divisions, and centers as opposed to institutes and departments—indicates that rehabilitation is not yet the priority that it should be across the federal government. The general levels of research activities within each program are the primary barrier to adequate attention to the pressing issues in rehabilitation research. The priorities within each program, although in need of coordination, seem appropriate within their respective missions. The problem lies not in the particular rehabilitation programs but in the constraints and limited visibility that they experience within their respective agencies or departments. Increasing the capacity of one program or directing another program to focus on a specific problem is not the solution to the general needs of rehabilitation-related research. The necessary programs exist, but they must be elevated and funded to more appropriate levels, increasing the resources, visibility, and importance of rehabilitation across the agencies. The committee believes that NCMRR, for example, should at least be a separate Center at NIH. As a free-standing center, NCMRR could form one or more special emphasis review committees managed by the Division of Research Grants, NIH. This approach would follow the standard NIH operation of separating DRG study sections from Institutes and allowing the science of the projects to be reviewed for funding consideration by several institutes. The special emphasis panels would have scientists with experience in rehabilitation-related topics, giving these types of applications a more favorable chance for funding than currently exists at NIH. The net result would improve the science and encourage more applications in the area of medical rehabilitation. NCMRR should also be given the ability to support multidisciplinary research centers. This would allow NCMRR to fund thematic program projects in areas such as mobility, psychosocial, multiple organ systems, assessment and measurement, treatment effectiveness, and use of assistive technology (specifically prosthetics). Additionally, NCMRR would be able to fund clinical trials for effectiveness of old and new treatments, multiple organ system studies, cross condition comparisons, longitudinal studies of the natural course, primary health care for long-term illness and disabling conditions, and managed care. Similarly, the DPP should be elevated within the CDC, perhaps to the

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--> CDC Directors' office level. Like minority health and women's health, disability and rehabilitation-related research is a cross-cutting area that transcends definition at the Center level. Placement within the CDC Director's office would afford rehabilitation science and engineering the visibility that it deserves and help to ensure that these issues would be integrated into all programmatic activities. Summary By moving NIDRR to create ADRR, the federal government would take a very important step in enhancing the productivity, relevance, and coordination of the programs which support rehabilitation research. Each of the current programs provides vital information for various communities of people with disabling conditions, but heightened visibility of the individual programs would enhance their effectiveness. By augmenting the current research efforts, strengthening the efforts in coordination, and magnifying visibility, federal research efforts should become more productive and relevant. The following chapter describes the committee's overarching recommendations for improving the field of rehabilitation science and engineering.