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Enabling America: Assessing the Role of Rehabilitation Science and Engineering (1997)

Chapter: 10 ORGANIZATION AND ADMINISTRATION OF FEDERAL RESEARCH PROGRAMS

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Suggested Citation:"10 ORGANIZATION AND ADMINISTRATION OF FEDERAL RESEARCH PROGRAMS." Institute of Medicine. 1997. Enabling America: Assessing the Role of Rehabilitation Science and Engineering. Washington, DC: The National Academies Press. doi: 10.17226/5799.
×

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-

Suggested Citation:"10 ORGANIZATION AND ADMINISTRATION OF FEDERAL RESEARCH PROGRAMS." Institute of Medicine. 1997. Enabling America: Assessing the Role of Rehabilitation Science and Engineering. Washington, DC: The National Academies Press. doi: 10.17226/5799.
×

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).

Suggested Citation:"10 ORGANIZATION AND ADMINISTRATION OF FEDERAL RESEARCH PROGRAMS." Institute of Medicine. 1997. Enabling America: Assessing the Role of Rehabilitation Science and Engineering. Washington, DC: The National Academies Press. doi: 10.17226/5799.
×

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-

Suggested Citation:"10 ORGANIZATION AND ADMINISTRATION OF FEDERAL RESEARCH PROGRAMS." Institute of Medicine. 1997. Enabling America: Assessing the Role of Rehabilitation Science and Engineering. Washington, DC: The National Academies Press. doi: 10.17226/5799.
×

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

Suggested Citation:"10 ORGANIZATION AND ADMINISTRATION OF FEDERAL RESEARCH PROGRAMS." Institute of Medicine. 1997. Enabling America: Assessing the Role of Rehabilitation Science and Engineering. Washington, DC: The National Academies Press. doi: 10.17226/5799.
×

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

Suggested Citation:"10 ORGANIZATION AND ADMINISTRATION OF FEDERAL RESEARCH PROGRAMS." Institute of Medicine. 1997. Enabling America: Assessing the Role of Rehabilitation Science and Engineering. Washington, DC: The National Academies Press. doi: 10.17226/5799.
×

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.

Suggested Citation:"10 ORGANIZATION AND ADMINISTRATION OF FEDERAL RESEARCH PROGRAMS." Institute of Medicine. 1997. Enabling America: Assessing the Role of Rehabilitation Science and Engineering. Washington, DC: The National Academies Press. doi: 10.17226/5799.
×

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.

Suggested Citation:"10 ORGANIZATION AND ADMINISTRATION OF FEDERAL RESEARCH PROGRAMS." Institute of Medicine. 1997. Enabling America: Assessing the Role of Rehabilitation Science and Engineering. Washington, DC: The National Academies Press. doi: 10.17226/5799.
×

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

Suggested Citation:"10 ORGANIZATION AND ADMINISTRATION OF FEDERAL RESEARCH PROGRAMS." Institute of Medicine. 1997. Enabling America: Assessing the Role of Rehabilitation Science and Engineering. Washington, DC: The National Academies Press. doi: 10.17226/5799.
×

*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

Suggested Citation:"10 ORGANIZATION AND ADMINISTRATION OF FEDERAL RESEARCH PROGRAMS." Institute of Medicine. 1997. Enabling America: Assessing the Role of Rehabilitation Science and Engineering. Washington, DC: The National Academies Press. doi: 10.17226/5799.
×

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).

Suggested Citation:"10 ORGANIZATION AND ADMINISTRATION OF FEDERAL RESEARCH PROGRAMS." Institute of Medicine. 1997. Enabling America: Assessing the Role of Rehabilitation Science and Engineering. Washington, DC: The National Academies Press. doi: 10.17226/5799.
×

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

Suggested Citation:"10 ORGANIZATION AND ADMINISTRATION OF FEDERAL RESEARCH PROGRAMS." Institute of Medicine. 1997. Enabling America: Assessing the Role of Rehabilitation Science and Engineering. Washington, DC: The National Academies Press. doi: 10.17226/5799.
×

FIGURE 10-6 Number of abstracts within each category of relevance that address the specific states of the enabling-disabling process for the fiscal year 1995 program at the National Center for Medical Rehabilitation Research.

NOTE: Many abstracts address multiple states. 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. 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 and can be readily distinguished from disability which involves interaction with the environment. Disability: Functional changes stemming from the interaction of the subject with and in the larger context of the physical and social environment. For additional information, see Appendix A.

Suggested Citation:"10 ORGANIZATION AND ADMINISTRATION OF FEDERAL RESEARCH PROGRAMS." Institute of Medicine. 1997. Enabling America: Assessing the Role of Rehabilitation Science and Engineering. Washington, DC: The National Academies Press. doi: 10.17226/5799.
×

conditions. The goals of NCMRR's research portfolio include methods of effecting greater and faster recovery from injury and disease and improving a person's ability to live independently.

MRCC, like ICDR, has problems with effective coordination of programs and research and also suffers from insufficient funds and staff. Rehabilitation-related research is not a general priority within NIH and helps to explain the limited success that MRCC has experienced in its effort to mold a coordinated and effective effort among the many NIH programs.

National Institute on Disability and Rehabilitation Research

The mission of NIDRR, a part of the Office of Special Education and Rehabilitative Services in the U.S. Department of Education, is "to contribute to the independence of persons of all ages who have disabilities by seeking improved systems, products, and practices in the rehabilitation process." NIDRR accomplishes this mission by funding research, demonstration projects, training, and other related activities to maximize the full inclusion and integration of this population into society. Through grants, contracts, and cooperative agreements, NIDRR funds research designed to improve systems, products, and practices in the rehabilitation field. NIDRR is also charged with ensuring the widespread distribution of practical scientific and technological information in usable formats.

Research Priorities and Funding

The research funded by NIDRR covers almost every aspect of disability including brain injury, spinal cord injury, multiple sclerosis, and back pain, as well as broader areas such as technology, accessibility, aging, service delivery, policy, ethics, recreation, and community integration. In fiscal year 1995, NIDRR funded approximately $57 million in rehabilitation-related research, which included individual research grants, center grants, and fellowships. NIDRR reported that $19 million of this went to medical rehabilitation, applied research that focuses on methods for improving function, and efforts aimed at reintegrating people with disabling conditions into the community (Seelman, 1996). A total of $13 million was directed toward engineering and technology development. In addition to supporting centers that include training in their activities, NIDRR also funded more than $2 million in individual research training grants and $200,000 in academic disability studies. Lastly, NIDRR funded approximately $2.5 million in dissemination and projects that pertained to ADA.

In addition to its operating budget of $70 million, NIDRR controls $39 million of State Technology Assistance under the Technology-Related

Suggested Citation:"10 ORGANIZATION AND ADMINISTRATION OF FEDERAL RESEARCH PROGRAMS." Institute of Medicine. 1997. Enabling America: Assessing the Role of Rehabilitation Science and Engineering. Washington, DC: The National Academies Press. doi: 10.17226/5799.
×

TABLE 10-3 National Institute on Disability and Rehabilitation Research Funding for Center Grants, Americans with Disability Act (ADA) Assistance, and Disability Studies in Fiscal Year 1995

Activity

Amount Funded

Number of Projects

Center Grants

 

 

Rehabilitation Research and Training Centers

$24,536,852

47

Rehabilitation Engineering Research Centers

$10,844,615

16

Model Spinal Cord Injury Centers

$6,714,000

18

Total

$42,095,467

81

ADA assistance

$2,529,172

4

Disability studies

$198,787

8

Total

$44,823,426

174

Assistance for Individuals with Disabilities Act of 1988 (Public Law 100407; the Tech Act). This program supports consumer-driven plans for the delivery of assistive technology. The purpose of these grants is to establish a program of statewide, comprehensive technology-related assistance for individuals of all ages with disabling conditions.

Using NIDRR's fiscal year 1995 Annual Program Directory to obtain abstracts for the projects NIDRR funded, the committee determined that approximately $10 to 13 million of NIDRR's $70 million operating budget went to training, ADA compliance support, and contracts, leaving approximately $57 million to fund research through various means such as individual research grants, center grants, small business cooperatives, and fellowships. A large portion of this ($44 million) supports centers—Rehabilitation Research and Training Centers, Rehabilitation Engineering Research Centers, and Model Spinal Cord Injury Centers (see Table 10-3).

Center grants compose the largest portion (78 percent) of NIDRR's $57 million research budget. Rehabilitation Research and Training Centers and Rehabilitation Engineering Research Centers conduct research targeted toward the production of new knowledge that will improve rehabilitation methodologies and service delivery systems, alleviate or stabilize disabling conditions, and promote maximum social and economic independence. They also institute related teaching and training programs that are used to disseminate and promote the use of research findings focusing on new engineering solutions to problems of disability.

NIDRR further supports projects for academic disability studies and issues pertaining to implementation of the ADA, leaving approximately $11 million to fund individual research projects into several areas of reha-

Suggested Citation:"10 ORGANIZATION AND ADMINISTRATION OF FEDERAL RESEARCH PROGRAMS." Institute of Medicine. 1997. Enabling America: Assessing the Role of Rehabilitation Science and Engineering. Washington, DC: The National Academies Press. doi: 10.17226/5799.
×

Relevance Category

Amount Funded

Number of Projects

Percent Funding

Rehabilitation science

$5,482,738

42

49

Rehabilitation engineering

$1,901,059

29

17

Rehabilitation related (single state)

$3,430,567

32

31

Not related

$374,618

3

3

Total

$11,188,982

106

100

FIGURE 10-7 Percentage of research funding (not including center grants, disability studies, or Americans with Disability Act-assistance projects; these are summarized in Table 10-3) in four categories of relevance to rehabilitation research for the fiscal year 1995 program at the National Institute on Disability and 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: Projects that do not clearly address any rehabilitation state. For additional information, see Appendix A.

bilitation investigation. The committee's analysis2 showed that 49 percent ($5.4 million) of the approximate $11 million went toward rehabilitation science in fiscal year 1995 (see Figure 10-7), 17 percent ($1.9 million) of the funding supported rehabilitation engineering, 31 percent ($3.4 million) was single-state research, and 3 percent ($0.4 million) funded research

2  

See Appendix A for details on the committee's analysis.

Suggested Citation:"10 ORGANIZATION AND ADMINISTRATION OF FEDERAL RESEARCH PROGRAMS." Institute of Medicine. 1997. Enabling America: Assessing the Role of Rehabilitation Science and Engineering. Washington, DC: The National Academies Press. doi: 10.17226/5799.
×

that was not related. Although NIDRR does fund some projects that address pathology and impairment, the bulk of its projects focus on functional limitation and disability (see Figure 10-8).

Strengths and Weaknesses

NIDRR is a valuable program with a unique mission that the committee believes should be preserved. The most important distinction that separates NIDRR from other agencies is its attention to consumers' needs and its emphasis on the interaction of the person and the environment. Most of the weaknesses seem to be derived from NIDRR's administrative placement within the U.S. Department of Education. The GAO (U.S. General Accounting Office, 1989) described NIDRR's poorly developed peer review process, its insufficient personnel, and its lack of authority over its own affairs as being due in large part to the policies and infrastructure of the U.S. Department of Education. Former NIDRR directors and others have expressed the view that—despite the efforts of NIDRR staff—the policies, procedures, and general interests of the U.S. Department of Education continually hinder the program. In addition, the core funding of center grants consumes a large portion of the agency's funds for 5-year periods, thereby reducing flexibility.

The weaknesses in the peer review process are manifold. The experience of past directors and staff indicates that the primary weaknesses of the process are that the panels are too small and there is no continuity between panels; these review panels are composed of only a few (3-5) reviewers who meet for just one review session rather than standing study sections or peer review panels that meet on a consistent basis. In addition, grant applications are occasionally not sent out prior to review meetings. Holding only one round of reviews per year for the field initiated research program is inadequate.

Reform of the peer review process would improve the quality of research, discipline the awards process, and attract quality scientists and personnel, but directors of NIDRR and secretaries of the U.S. Department of Education have been unable to implement the necessary changes. Another problem is the ineffectiveness of ICDR as a federal coordinating body. Congress and the executive branch established ICDR within NIDRR through the Rehabilitation Act of 1973, acknowledging the multiplicity of agencies engaged in rehabilitation-related research and the need to promote coordination and cooperation among those federal programs. Authorized by the Rehabilitation Act of 1973, the charge to the director of NIDRR, as the chair of ICDR, is "to identify, assess, and seek to coordinate all Federal programs, activities, and projects, and plans for such programs, activities, and projects with respect to the conduct of research

Suggested Citation:"10 ORGANIZATION AND ADMINISTRATION OF FEDERAL RESEARCH PROGRAMS." Institute of Medicine. 1997. Enabling America: Assessing the Role of Rehabilitation Science and Engineering. Washington, DC: The National Academies Press. doi: 10.17226/5799.
×

FIGURE 10-8 Number of abstracts within each category of relevance that address the specific states of the enabling-disabling process for the fiscal year 1995 program at the National Institute on Disability and Rehabilitation Research.

NOTE: Many abstracts address multiple states. 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. 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 and can be readily distinguished from disability which involves interaction with the environment. Disability: Functional changes stemming from the interaction of the subject with and in the larger context of the physical and social environment. For additional information, see Appendix A.

Suggested Citation:"10 ORGANIZATION AND ADMINISTRATION OF FEDERAL RESEARCH PROGRAMS." Institute of Medicine. 1997. Enabling America: Assessing the Role of Rehabilitation Science and Engineering. Washington, DC: The National Academies Press. doi: 10.17226/5799.
×

related to rehabilitation of individuals with disabilities" (Public Law 93112, as amended). The Rehabilitation Act did not, however, give ICDR the proper tools, that is, control of funding, to achieve this mission. Thus, it lacks the ability to entice cooperation or ensure compliance, which severely limits its effectiveness. Moreover, ICDR has no staff, budget, or real control, and thus does not have the ability to carry out its stated mission. In its present state it cannot exert the influence necessary to coordinate the overall federal efforts in rehabilitation-related research.

Perhaps because disability is not a priority of the U.S. Department of Education and because NIDRR does not have the budget to demand attention, NIDRR is neglected by the department and is not given adequate priority.

U.S. Department of Veterans Affairs

The VA program in rehabilitation-related research began shortly after the end of World War II as part of the effort to improve the quality of health care being provided to returning veterans with disabling conditions. VA medical research programs in general are meant to enhance the overall mission of the Veterans Health Administration (VHA), contribute new knowledge benefiting the nation as a whole, and provide training for future health care clinicians and researchers. The goals of VA's research program derive from its legislated mission as well as a continuously evolving shared vision of veterans' needs and VA's research potential. The VA Research and Development Office is divided into three services: the Medical Research Service, the Health Services Research and Development (HSR&D) Service, and the Rehabilitation Research and Development (Rehab R&D) Service.

Research that is relevant to rehabilitation can be found in almost all VA research activities. In addition to the services mentioned above, for example, the VA Geriatric Service maintains 16 Geriatric Research, Education, and Clinical Centers that include some rehabilitation-related research as it pertains to aging. The principal division for rehabilitation-related research within VA, however, is the Rehab R&D Service. Focusing most clearly on the needs of veterans with disabling conditions, the Rehab R&D Service:

  • develops concepts, products, and processes that promote greater functional independence and improve the quality of life for "impaired and disabled veterans";
  • supports a comprehensive program of investigator-initiated research, development, and evaluation of rehabilitation technology;
  • provides for the immediate transfer of rehabilitation technology
Suggested Citation:"10 ORGANIZATION AND ADMINISTRATION OF FEDERAL RESEARCH PROGRAMS." Institute of Medicine. 1997. Enabling America: Assessing the Role of Rehabilitation Science and Engineering. Washington, DC: The National Academies Press. doi: 10.17226/5799.
×
  • and rapid dissemination of information into the VA health care delivery system; and
  • contributes to the nation's knowledge about disease, disability, and rehabilitation.

Under the leadership of the Under Secretary for Health, VA effected a major reorganization of VHA at the beginning of Fiscal Year 1996. It is, as of this writing, not yet fully implemented. Incident to this reorganization and the associated staffing reduction for VA's Central Office, the Rehab R&D Service, having for some time been a separate office, was moved back under the Assistant Chief Medical Director for Medical Research and Development. Because of the overlapping areas of investigation, research that is relevant to patient rehabilitation can be found in the various VA research programs and services. VA leadership now believes this integrated organizational structure provides a linear model of interactions among the three categories (medical, rehabilitation, and health services) of research and encourages interservice coordination and support. Assurances has been given to this committee that the structural and functional integrity of the Rehab R&D Service will be maintained.

Research Priorities and Funding

The VA Rehab R&D Service received $26.7 million of the fiscal year 1995 VA budget, but unlike the VA Medical Research and HSR&D Services, which receive extramural support from other agencies, the Rehab R&D Service has no source of funding outside VA itself. In fiscal year 1995, the Rehab R&D Service supported 147 projects and about 150 principal investigators at VA medical centers. In addition, other departments in the Research Office fund rehabilitation projects amounting to approximately $6 million, itemized under the following categories:

Career Development

$234,000

Cooperative Studies

33,899

HSR&D Service

1,198,000

Biomedical

4,833,000.

Because of its legislative mandate and its appropriate historical role of supporting U.S. veterans, VA focuses a significant amount of its research efforts on rehabilitation. Research in VA's Rehab R&D Service is focused on prosthetics and orthotics, spinal cord dysfunction, aging, and cognitive and sensory impairments. The rehabilitation program is geared to improving functional independence and the quality of life of veterans with disabling conditions.

Suggested Citation:"10 ORGANIZATION AND ADMINISTRATION OF FEDERAL RESEARCH PROGRAMS." Institute of Medicine. 1997. Enabling America: Assessing the Role of Rehabilitation Science and Engineering. Washington, DC: The National Academies Press. doi: 10.17226/5799.
×

To assess rehabilitation-related research at VA, the committee reviewed abstracts that were provided by VA's Rehabilitation Research and Development program (funding amounts were not available for each project). Analysis3 of the abstracts indicated that 33 percent were rehabilitation science (See Figure 10-9); rehabilitation engineering represented a full 46 percent of the studies funded in fiscal year 1995; 20 percent of the abstracts covered single-state research, and 1 percent were not related to rehabilitation. Within these categories of relevance, Figure 10-10 shows how many of the abstracts included a focus on the individual states in the enabling-disabling process. The distribution of VA research along the rehabilitative states reflected VA's mission, with most of the research concentrating on functional limitations.

Strengths and Weaknesses

VA research is a needs-based program, setting its priorities from the health care requirements of its veteran clientele. There is also a synergistic relationship between VA research and the veteran population that it serves. U.S. veterans display a proprietary interest in VA programs, are advocates for VA research, and are a unique test bed for VA clinical research and device studies. No other health care system, public or private, has a similar, unified research program with the breadth and depth of VA's.

Many of VA's research outcomes not only benefit veterans but serve national interests as well. Certain characteristics, however, make the VA research program unique. Research assignments commonly come to VA and DOD directly from Congress with legislative oversight of their progress and outcome. Not unlike VA's mandated clinical mission of combat contingency backup to the military medical services, VA's research department is DoD's primary designated agency for medical research support, as exemplified in VA's current multimillion dollar investment in Persian Gulf War veterans' illness.

Combat has many consequences. Most critical are the men and women with severe and permanent injuries. These veterans of war face complex issues throughout their lives. A VA program of Rehabilitation Research and Development gives flexibility to find solutions to these programs, whether they present themselves early on when as an injured soldier returns from Bosnia, or later, as disabled veterans of the Persian Gulf, Vietnam, Korea and World War II enter their fifties, sixties and seventies.

The comprehensive nature of the program is, in itself, unique. The VA Research and Development Office is organized in a way that reflects the

3  

See Appendix A for details of the committee's analysis.

Suggested Citation:"10 ORGANIZATION AND ADMINISTRATION OF FEDERAL RESEARCH PROGRAMS." Institute of Medicine. 1997. Enabling America: Assessing the Role of Rehabilitation Science and Engineering. Washington, DC: The National Academies Press. doi: 10.17226/5799.
×

Relevance Category

Amount Funded

Number of Projects

Percent of Projects

Rehabilitation science

NA

53

33

Rehabilitation engineering

NA

74

46

Rehabilitation related (single state)

NA

33

20

Not related

NA

2

1

Totals

$26,700,000

162

100

NA = Not available.

FIGURE 10-9 Percentage of research projects (not including center grants) in four categories of relevance to rehabilitation research for the fiscal year 1995 program at the Department of Veterans Affairs. 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.

interrelated research questions that can be posed when a particular health outcome is desired. The acquisition of new knowledge spans the entire spectrum of research from basic to applied research to outcomes research, with each component of that spectrum being linked to the other. VA makes the strong claim that its intramural coordination of research, policy, and planning favors that linkage of interests.

Suggested Citation:"10 ORGANIZATION AND ADMINISTRATION OF FEDERAL RESEARCH PROGRAMS." Institute of Medicine. 1997. Enabling America: Assessing the Role of Rehabilitation Science and Engineering. Washington, DC: The National Academies Press. doi: 10.17226/5799.
×

FIGURE 10-10 Number of abstracts within each category of relevance that address the specific states of the enabling-disabling process for the fiscal year 1995 program at the Department of Veterans Affairs.

NOTE: Many abstracts address multiple states. 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. 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 and can be readily distinguished from disability which involves interaction with the environment. Disability: Functional changes stemming from the interaction of the subject with and in the larger context of the physical and social environment. For additional information, see Appendix A.

Suggested Citation:"10 ORGANIZATION AND ADMINISTRATION OF FEDERAL RESEARCH PROGRAMS." Institute of Medicine. 1997. Enabling America: Assessing the Role of Rehabilitation Science and Engineering. Washington, DC: The National Academies Press. doi: 10.17226/5799.
×

VA's research laboratories serve national interests as well. These VAMC based facilities, as a constituent element of the VA academic affiliation with 105 medical schools, provide an intimate coupling of advanced research activity with the nation's single largest source of graduate medical education. Today, more than 60 percent of doctors in the United States have received all or part of their training at VA medical centers.

Centers for Disease Control and Prevention

The mission of CDC is to promote health and quality of life by preventing and controlling disease, disability, and injury. To accomplish this mission, CDC works with state authorities and partners throughout the United States and the world to monitor health, detect and investigate health problems, conduct research to enhance prevention, develop and advocate sound public health policies, implement prevention strategies, promote healthy behaviors, foster safe and healthful environments, and provide leadership and training. Two of the centers have rehabilitation-related programs. The National Center for Environmental Health (NCEH) includes the Disabilities Prevention Program (DPP), and the National Center for Injury Prevention and Control (NCIPC) includes the Division of Acute Care, Rehabilitation Research, and Disability Prevention.

DPP, which funded $9 million in disability prevention research in fiscal year 1995, has two major goals: (1) to reduce the incidence and severity of primary and secondary disabling conditions and (2) to promote the independence and productivity of people with disabling conditions and further their integration into the community. To achieve these goals, DPP

  • provides states with technical and financial assistance to build disability prevention capacity,
  • establishes surveillance systems for disabling conditions,
  • identifies risk factors for disabling conditions, and
  • identifies and develops appropriate interventions to prevent secondary disabling conditions.

The goals of the Division of Acute Care, Rehabilitation Research, and Disability Prevention are to maximize the quality of life and productivity, minimize the health care costs of injured people, and reduce the impacts of injuries by improving acute care and rehabilitation services and systems. The division spends $500,000 to $600,000 annually on disability prevention, with a special interest in community-based injury and outcomes surveillance and research to prevent the occurrence of or reduce the severity of secondary conditions among people with traumatic brain

Suggested Citation:"10 ORGANIZATION AND ADMINISTRATION OF FEDERAL RESEARCH PROGRAMS." Institute of Medicine. 1997. Enabling America: Assessing the Role of Rehabilitation Science and Engineering. Washington, DC: The National Academies Press. doi: 10.17226/5799.
×

and spinal cord injuries. Research includes identifying risk factors associated with adverse outcomes in the community setting, describing the natural history of the occurrence of adverse outcomes and secondary conditions, and evaluating interventions in the community setting.

Research Priorities and Funding

In fiscal year 1995, the two programs mentioned above supported a total of almost $10 million in rehabilitation-related research. Their grant-making process is modeled after that of NIH, but no training grants are available. Resources from both NCIPC and NCEH are used in a complementary fashion, occasionally within the same request for proposal, to cover a range of injury-related rehabilitation research that focuses on measuring the frequency and extent of disabling conditions caused by injury, measuring the secondary conditions, and developing and evaluating community-based interventions to prevent or reduce these disabling conditions. Secondary conditions are the clearest priority in CDC's disability and rehabilitation agenda, and the majority of CDC abstracts that the committee reviewed explicitly addressed this issue. Other abstracts described research involving prevention of disabling injury in the community.

The small number and uniform nature of the abstracts received from CDC made categorization through the abstract review process unnecessary. The projects funded by CDC consistently address prevention, specifically of secondary conditions among individuals with cerebral palsy, postpolio syndrome, spinal cord injury, or traumatic brain injury. All of the CDC abstracts were considered pertinent to rehabilitation research and a valuable contribution to the field.

Strengths and Weaknesses

The CDC program has several strengths including a community- or population-based approach to prevention and intervention, strong linkages with states, especially state health departments, and a history of effective surveillance activities. These links also help involve consumers in the process of setting research priorities.

CDC's focus on prevention as a means of reducing disabling conditions sets it apart from other federal programs and is an essential component of the overall federal effort. The CDC program makes a clear connection between prevention and rehabilitation, especially with its focus on preventing secondary conditions. Preventing secondary conditions as part of rehabilitation is an important area of research, especially from the perspective of aging with disabling conditions.

Suggested Citation:"10 ORGANIZATION AND ADMINISTRATION OF FEDERAL RESEARCH PROGRAMS." Institute of Medicine. 1997. Enabling America: Assessing the Role of Rehabilitation Science and Engineering. Washington, DC: The National Academies Press. doi: 10.17226/5799.
×

Monitoring events such as traumatic brain and spinal cord injuries, and the adverse outcomes associated with these injuries, also contributes to the goals of rehabilitation science and engineering. CDC's public health surveillance activities measure the incidence and prevalence of these injuries, and community-based intervention programs contribute to their prevention and control.

The weaknesses in the CDC program are the same as those seen in most other agency programs. For example, there is a need for more visibility within the agency and more involvement of other internal programs. Other centers (e.g., National Center for Chronic Disease Prevention and Health Promotion) should be more involved in the total effort. There is also a need to strengthen the links between CDC and other federal agencies to identify, validate, and adopt more uniform measurement strategies and terminologies in databases, as well as determining priorities and synergistic activities.

National Science Foundation

Established as an independent federal agency by the National Science Foundation Act of 1950, NSF is responsible for the overall health of science and engineering across all scientific disciplines and for promoting and advancing scientific progress in the United States. In contrast, other federal agencies support research focused on specific missions, such as health or defense. NSF is also committed to ensuring the nation's supply of scientists, engineers, and science educators.

All seven directorates in NSF support some projects related to rehabilitation, and in fiscal year 1995, NSF spent approximately $7 million on projects in this general area. The projects are typically investigator initiated and are recommended for funding during regular competitive review cycles. Most of the rehabilitation-related projects are supported through the Directorate for Engineering, which funds research pertinent to rehabilitation science and engineering through its Division of Bioengineering and Environmental Systems. The division operates two programs that support research for people with disabling conditions: the Biomedical Engineering Program and Research Aiding Persons with Disabilities (RAPD).

The Biomedical Engineering Program supports fundamental engineering research that has the potential to contribute to improved health care. The RAPD program is directed toward the characterization, restoration, and substitution of function in humans and tends to focus on basic science at the level of cells, tissues, organs, and organ systems. Emphasis is placed on the advancement of fundamental engineering knowledge, but many grants support product development. The program anticipates that the research will lead to the development of new technologies or the

Suggested Citation:"10 ORGANIZATION AND ADMINISTRATION OF FEDERAL RESEARCH PROGRAMS." Institute of Medicine. 1997. Enabling America: Assessing the Role of Rehabilitation Science and Engineering. Washington, DC: The National Academies Press. doi: 10.17226/5799.
×

novel application of existing technologies by supporting research and training in basic science.

Research Priorities and Funding

One of NSF's goals is to expand the capacity for research, and therefore, the agency places importance on training. Approximately 20 percent of the abstracts that the committee reviewed for fiscal year 1995 involved training in research or product design. Although NSF does support faculty and graduate work, roughly three quarters of the training grants related to rehabilitation science and engineering went to undergraduate training.

Abstracts from NSF for fiscal year 1995 were retrieved from FastLane, the agency's on-line database, for the RAPD program. Figure 10-11 indicates that (on the basis of expenditures) 76 percent of the funding for rehabilitation-related research supported rehabilitation engineering activities. Single-state research represented 12 percent of the funding, and another 12 percent was not related to rehabilitation. None of the research was determined to be in the category of rehabilitation science. Within these categories of relevance, Figure 10-12 shows that most of the research tended to focus on functional limitation, disability, and impairment, in descending order.

The clearest priority is engineering. Not only did more than half of the abstracts that the committee reviewed pertain to rehabilitation engineering research, but the majority of the training grants funded rehabilitation engineering projects as well. The engineering grants tended to emphasize basic research, but many, including the training grants, were designed to advance product development. The accent on basic science continued in biomedical research as well, and the majority of all NSF research focused on impairment. NSF also sponsored grants that addressed health services, and all of these focused on cost reduction.

Strengths and Weaknesses

The strengths of NSF research emanate from its emphasis on basic science and rehabilitation engineering, a focus that is essential to the overall federal effort. NSF also addresses educational needs through the undergraduate design projects that recruit young engineers to the rehabilitation field. The relative size of the program, however, limits its ability to influence the overall field of rehabilitation science and engineering. NSF programs also experience a lack of coordination with other federal programs, thus limiting the potential synergy among the projects being supported by other agencies.

Additionally, none of the research projects emphasize rehabilitation

Suggested Citation:"10 ORGANIZATION AND ADMINISTRATION OF FEDERAL RESEARCH PROGRAMS." Institute of Medicine. 1997. Enabling America: Assessing the Role of Rehabilitation Science and Engineering. Washington, DC: The National Academies Press. doi: 10.17226/5799.
×

Relevance Category

Amount Funded

Number of Projects

Percent Funding

Rehabilitation science

$0

0

0

Rehabilitation engineering

$2,658,776

30

76

Rehabilitation related (single state)

$422,833

2

12

Not related

$420,314

4

12

Totals

$3,501,923

36

100

FIGURE 10-11 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 Science Foundation. Rehabilitation science: Projects that address movement among states in the enablingdisabling 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.

science as defined by this committee, that is, concentration on the movement between the states in the enabling-disabling process (see Chapter 3). Although the research that NSF funds is an important component of the mix of interdisciplinary research in the field, the majority focuses on impairment without reference to other states. Thus, the focus of most NSF research is within each stage of the enabling-disabling process rather than the process itself. Only the grants aimed at products for individuals with disabling conditions offer the opportunity to provide an understanding of not only engineering principles but also effective rehabilitation and the interaction between the individual and the environment. Given ad-

Suggested Citation:"10 ORGANIZATION AND ADMINISTRATION OF FEDERAL RESEARCH PROGRAMS." Institute of Medicine. 1997. Enabling America: Assessing the Role of Rehabilitation Science and Engineering. Washington, DC: The National Academies Press. doi: 10.17226/5799.
×

FIGURE 10-12 Number of abstracts within each category of relevance that address the specific states of the enabling-disabling process for the fiscal year 1995 program at the National. Science Foundation.

NOTE: Many abstracts address multiple states. 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. 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 and can be readily distinguished from disability which involves interaction with the environment. Disability: Functional changes stemming from the interaction of the subject with and in the larger context of the physical and social environment. For additional information, see Appendix A.

Suggested Citation:"10 ORGANIZATION AND ADMINISTRATION OF FEDERAL RESEARCH PROGRAMS." Institute of Medicine. 1997. Enabling America: Assessing the Role of Rehabilitation Science and Engineering. Washington, DC: The National Academies Press. doi: 10.17226/5799.
×

equate funds, NSF should support clinical research efforts, perhaps in rehabilitation engineering centers, that involve a more comprehensive view of the enabling process.

Other Agencies

Several other federal agencies are also involved in rehabilitation science and engineering (see Appendix B). SSA for example, funded approximately $5 million in fiscal year 1995 in research for the purposes of developing intervention and service delivery models such as returning beneficiaries to work. SSA also recently initiated an Institute of Medicine (IOM) study for the purposes of reviewing its research plans for a revised process of determining whether a person has a disability.

In addition to the NIH and CDC programs described above, DHHS also administers a program in the Office of the Assistant Secretary for Planning and Evaluation (ASPE). This office is responsible for the development, coordination, research, and evaluation of DHHS policies and programs that support the independence, productivity, health, and security of children, working-age adults, and older people with disabling conditions. Within ASPE, the Office of Disability, Aging, and Long-Term Care Policy, along with other ASPE offices, provides staff support to the assistant secretary in carrying out these functions. One of this office's chief priorities concerns personal assistance services, which involve all forms of assistance, both human and technological, that enable people with disabling conditions to accomplish basic and instrumental daily living activities. In fiscal year 1995 ASPE funded $2.5 million in research that focused on the policy needs concerning personal assistance services and the delivery of those services.

Finally, it seems reasonable that the U.S. Department of Defense would be engaged in rehabilitation science and engineering research, but a survey conducted at the committee's request by the Assistant Secretary of Defense for Health Affairs revealed an insignificant volume of rehabilitation research being conducted within the military medical services. The U.S. Department of Defense does, however, subsidize, under contract, certain unspecified rehabilitation-related research. Various levels of clinical rehabilitation services are also provided in all military hospitals.

General Assessment of Federal Rehabilitation Programs

In addition to reviewing the individual federal programs that focus on rehabilitation-related research, the committee also reviewed the overall organization and administration of these programs for the purpose of

Suggested Citation:"10 ORGANIZATION AND ADMINISTRATION OF FEDERAL RESEARCH PROGRAMS." Institute of Medicine. 1997. Enabling America: Assessing the Role of Rehabilitation Science and Engineering. Washington, DC: The National Academies Press. doi: 10.17226/5799.
×

assessing their combined adequacy in addressing the health needs of people with disabling conditions. In assessing a constellation of programs of this size and complexity with the overall mission of addressing health needs of such magnitude, it is not surprising to find some apparent problems. Foremost among these are the need for improved coordination among the various and numerous federal research programs and the need for additional research in rehabilitation science and engineering that will help to improve the health, quality of life, and productivity of the 49 million Americans with disabling conditions.

Further analysis of these programs—including the related efforts outside NCMRR at NIH—revealed certain trends in the overall federal research effort in rehabilitation science and engineering (see Figures 10-13 and 10-14). Given the current constraints and limitations of funding, these findings show a generally good balance of effort, but with most of the research focusing on pathology and impairment, and a relatively smaller proportion of research focusing on disability per se.

Adequacy of Current Efforts

The size of the combined federal research effort in the field of rehabilitation science and engineering is not adequate to address the health needs of people with disabling conditions. A clear disproportionality exists between the magnitude and significance of the health issues related to disability and rehabilitation and the amount of research that is currently supported to address them. This is not a new situation, as indicated by the NCMRR research plan from 1993, which states that one of the most important barriers ''to improving rehabilitation research is inadequate funding. ... Given the large numbers of Americans with disabilities, the social and economic impact of disability, and the opportunities for improvement of function through research, a significantly greater effort to fund medical rehabilitation research is clearly justified" (NCMRR, 1993, p. 48).

Chapter 2 of this report describes the significance of disabling conditions in various terms, including prevalence of conditions and the associated costs of health care and lost productivity. In 1996, for example, Trupin and colleagues used the National Medical Care Expenditures Survey to estimate that approximately 47 percent of the total medical care expenditures were for 17 percent of the population with an activity limitation. Expressed in 1994 terms, these medical care expenditures (direct costs) for people with disabling conditions would amount to $205.7 billion, or 3.1 percent of the gross domestic product (U.S. Bureau of the Census, 1995). Other studies, most notably Chirikos (1989), have estimated both direct and indirect costs. Expressed again in 1994 terms, the medical care expenditures (direct costs) would amount to $163.1 billion, and the indirect

Suggested Citation:"10 ORGANIZATION AND ADMINISTRATION OF FEDERAL RESEARCH PROGRAMS." Institute of Medicine. 1997. Enabling America: Assessing the Role of Rehabilitation Science and Engineering. Washington, DC: The National Academies Press. doi: 10.17226/5799.
×

Relevance Category

Amount Funded

Number of Projects

Percent Funding

Rehabilitation science

$101,105,292

543

37

Rehabilitation engineering

$44,129,995

293

16

Rehabilitation related (single state)

$100,540,664

540

36

Not related

$30,207,510

193

11

Totals

$275,983,461

1,569

100

FIGURE 10-13 Percentage of research funding (not including center grants) in four categories of relevance to rehabilitation research for the fiscal year 1995 program for overall federal 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: Projects that do not clearly address any rehabilitation state. For additional information, see Appendix A.

costs (lost productivity) would total $155 billion, for a grand total of more than $300 billion annually—more than 4 percent of the gross domestic product.

These cost estimates for disability and rehabilitation are in stark contrast to the relatively small amount of funding (approximately $245 million) that is directed toward research in rehabilitation science and engineering. Current expenditures amount to approximately $7 in research per year for each person with a disabling condition, whereas the costs of disability due to expenditures of health care and lost productivity, at about $7,500 per capita, are almost 1,000 times as great. Most importantly,

Suggested Citation:"10 ORGANIZATION AND ADMINISTRATION OF FEDERAL RESEARCH PROGRAMS." Institute of Medicine. 1997. Enabling America: Assessing the Role of Rehabilitation Science and Engineering. Washington, DC: The National Academies Press. doi: 10.17226/5799.
×

FIGURE 10-14 Number of abstracts within each category of relevance that address the specific states of the enabling-disabling process for the fiscal year 1995 program of overall federal research.

NOTE: Many abstracts address multiple states. 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. 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 and can be readily distinguished from disability which involves interaction with the environment. Disability: Functional changes stemming from the interaction of the subject with and in the larger context of the physical and social environment. For additional information, see Appendix A.

Suggested Citation:"10 ORGANIZATION AND ADMINISTRATION OF FEDERAL RESEARCH PROGRAMS." Institute of Medicine. 1997. Enabling America: Assessing the Role of Rehabilitation Science and Engineering. Washington, DC: The National Academies Press. doi: 10.17226/5799.
×

however, significant savings in health care costs and reduced emotional costs may well be realized by enhancing research in rehabilitation science and engineering and improving the health, productivity, and quality of life of people with disabling conditions.

Coordination of Current Efforts

To be most effective, any set of research programs must be well coordinated. This is especially true for the set of federal research programs in rehabilitation science and engineering because of their distribution among so many different agencies and departments. Moreover, given the relatively limited amount of funding that is available for these research programs, good coordination is essential to maximize their combined productivity.

Despite a legislative mandate to NIDRR for coordination among the various and numerous federal agencies and programs there is a significant shortfall in achieving this important objective. Poor coordination and communication among programs severely limits their ability to develop and implement a cohesive vision for the overall federal effort or to establish well-defined research priorities that could complement one another. Territorial tension among the programs accentuates the problem and further limits possible interagency and multidisciplinary activities that are typically the hallmark of rehabilitation science and engineering.

Although some argue that there are benefits to the fact that responsibility for conducting and supporting current research in rehabilitation science and engineering is currently scattered among several agencies (e.g., multiple funding sources and replication of research), there are also drawbacks in terms of poor coordination and possible unnecessary duplication of effort. Inadequate monitoring of rehabilitation-related research activities among the various programs contributes to the potential problem of duplication of effort, and the different terminologies used by the various agencies complicate the issue even further, often making it nearly impossible to determine what is being done, and by whom. Moreover, although most programs have some means of cataloging and monitoring their respective research activities, each has its problems. For example, comparison of NIH research activities in rehabilitation and disability that are identifiable through the Computerized Retrieval of Information on Scientific Projects (CRISP) database with those activities identified by the NIH Institutes themselves shows only an 17 percent agreement (see Figure 10-15). In other words, most activities that were identified in CRISP as being rehabilitation-related research were not identified by the Institutes as such, and vice versa.

Even within agencies there are problems of coordination and communi-

Suggested Citation:"10 ORGANIZATION AND ADMINISTRATION OF FEDERAL RESEARCH PROGRAMS." Institute of Medicine. 1997. Enabling America: Assessing the Role of Rehabilitation Science and Engineering. Washington, DC: The National Academies Press. doi: 10.17226/5799.
×

FIGURE 10-15 Sources of National Institutes of Health abstracts.

cation. The definition of rehabilitation-related research, for example, is not consistent among the Institutes at NIH (see Box A-2 in Appendix A). As described in Appendix A, this results in a variety of problems, including difficulty in even describing the current status of research. Moreover, with respect to NIH specifically, the lack of a study section to review rehabilitation-related research applications raises the question of whether there is a well-coordinated research effort in this field among the Institutes.

By law, the responsibility for coordinating federal disability research programs rests with ICDR, which is to be chaired by the director of NIDRR and whose membership includes 11 different agencies. The level of activity and relative success of ICDR, however, vary and are a function of both the energy and attention that ICDR receives from NIDRR and the goodwill, cooperation, and voluntary participation of its members.

Although ICDR has the potential (and the legislative mandate) to serve as a forum for agencies to discuss issues of mutual interest and concern and as a mechanism for them to identify research priorities and coordinate their research agendas, it has been relatively unsuccessful in these regards. This primarily seems to be a result of the fact that ICDR has no authority to ensure cooperation or even participation. It also has no full-time staff to manage and operate ICDR, nor any real means of providing incentives for member agencies to participate. Agency participation in ICDR meetings varies because the benefits of participation are not necessarily clear and the lack of participation has no observable negative effects on individual programs. Thus, the Holy Grail of effective coordination remains elusive, despite a clear need and the often valiant efforts

Suggested Citation:"10 ORGANIZATION AND ADMINISTRATION OF FEDERAL RESEARCH PROGRAMS." Institute of Medicine. 1997. Enabling America: Assessing the Role of Rehabilitation Science and Engineering. Washington, DC: The National Academies Press. doi: 10.17226/5799.
×

on the part of NIDRR to compel and persuade the various agencies to participate.

One result of this disjointed effort is that potentially important areas of research in rehabilitation science and engineering may be either overlooked or underemphasized. For example, there seems to be inadequate attention to education and training of researchers in the field, especially nonmedical investigators, and health services research has largely been neglected. Perhaps the single greatest consequence of this disjointed effort, however, seems to be the lack of an appropriate emphasis on disability research per se, that is, the interaction of the person and the physical and social environments. NIDRR activities seem to address this particular area to a greater extent than the activities of other programs do, but the need still eclipses the effort. Far more studies are needed to address the environment as an independent variable and to identify and develop strategies for reducing and preventing disability and secondary conditions.

A well-coordinated federal effort in rehabilitation science and engineering with adequate funding and visibility is needed. This effort would address the following nine objectives:

  • monitor the range of research activities in rehabilitation science and engineering among the various and numerous federal programs,
  • ensure the highest-quality research (e.g., through peer review),
  • identify and establish clear research priorities that would be complementary and mutually beneficial among the different federal programs,
  • ensure interagency collaboration and joint research activities and reduce unnecessary duplication of effort,
  • enhance the development of a cadre of rehabilitation scientists and engineers,
  • develop effective technology transfer activities,
  • help establish and maintain the use of consistent definitions and terminologies among agencies,
  • optimize productivity through resource sharing and other costsaving activities, and
  • conduct clinical trials of therapeutic and environmental strategies to reduce and prevent disabling and secondary conditions.

The remainder of this chapter describes three of the many options that the committee developed and considered as means of addressing the problems and needs associated with inadequate support and coordination of federal programs in rehabilitation science and engineering. This is followed by recommendations for achieving enhanced coordination and visibility of the overall federal effort in rehabilitation science and engineering and for overarching areas of priority research.

Suggested Citation:"10 ORGANIZATION AND ADMINISTRATION OF FEDERAL RESEARCH PROGRAMS." Institute of Medicine. 1997. Enabling America: Assessing the Role of Rehabilitation Science and Engineering. Washington, DC: The National Academies Press. doi: 10.17226/5799.
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Summary of Possible Options

The assessment of the current organization and administration of federal research in rehabilitation science and engineering described above reveals the deficiencies to be inadequate support, visibility, and coordination. Thus, any attempt to address these deficiencies must include strategies to increase support, enhance visibility, and improve coordination. More specifically, to improve the health, quality of life, and productivity of people with disabling conditions, the constellation of federal programs needs to address the nine objectives listed above.

In formulating its recommendations for the organization and administration of research in rehabilitation science and engineering by the federal government that address the needs and objectives articulated above, the committee considered several options. A summary of three of these is described below to characterize the spectrum of possibilities that the committee considered in developing the final recommendation.

Option 1: Improvement of NIDRR

All of the current programs that conduct and support research in rehabilitation science and engineering are important and make significant contributions to the overall need to improve the health of people with disabling conditions. If there is one program, however, that not only has possibly the largest potential for contributing to this effort but that is also the most limited by administrative and organizational constraints, it is NIDRR. The NIDRR mission and its constituency of people with disabling conditions are fundamentally important to the research agenda of rehabilitation science and engineering espoused by this committee. NIDRR has vigorously pursued this mission, but in the committee's estimation and as described above, it has been restricted in its ability to fully execute its mission primarily by virtue of its administrative position within the U.S. Department of Education, and the ICDR's lack of real authority.

Option 1 is designed to improve the overall constellation of federal programs by focusing on improving one of the most important components: NIDRR. In summary, this option would (1) improve peer review of grant applications at NIDRR and (2) move current medical research activities from NIDRR to NIH/NCMRR, limiting the focus in NIDRR to transportation, employment, independent living, parenting, and disability studies.

As discussed previously, the review of grant applications in NIDRR needs to be changed to improve its consistency and quality. To do this, review panels need to be established that would meet over a period of time rather than just once. In addition, although NIDRR is

Suggested Citation:"10 ORGANIZATION AND ADMINISTRATION OF FEDERAL RESEARCH PROGRAMS." Institute of Medicine. 1997. Enabling America: Assessing the Role of Rehabilitation Science and Engineering. Washington, DC: The National Academies Press. doi: 10.17226/5799.
×

to be commended for its success in including consumers in the review of applications, there is a need to enhance the quality of the technical review.

One important aspect of the NIDRR program is its focus on person-environment interactions with an emphasis on the whole person. Implementing this option would refocus the NIDRR mission to emphasize the impacts of interventions and assistive technologies on improving the lives of people with disabling conditions in the following areas: employment, transportation, independent living, parenting, and disability studies. Thus, NIDRR would focus on programs that emphasize environment as an independent variable.

The advantages of keeping NIDRR in U.S. Department of Education include the following: constituencies remain intact, continuity of funding is ensured for Rehabilitation Research and Training Centers and Rehabilitation Engineering Research Centers, and costs of relocation are avoided. Because of its importance and particular focus of research activities, improving the NIDRR program would help to improve the present condition of the overall situation. However, these are minimal improvements that would improve only one important part of the constellation of activities and would not adequately address the need for a well-coordinated and well-supported overall federal effort.

Option 2: Consolidation of All Programs into a New Agency

Option 2 is at the opposite end of the spectrum of possible options for addressing the need for change in the organization and administration of research programs in rehabilitation science and engineering. This option would move all programs that currently support research in rehabilitation science and engineering into a single, newly created agency or department. The committee considered this option because the research issues related to the health of people with disabling conditions are significant enough, and large enough, to deserve such visibility and attention.

Many of the advantages and disadvantages of this option are readily apparent. With such consolidation of programs there would be economies of scale and potential savings in reduced bureaucratic waste. However, there would also be the costs associated with uprooting and displacing the many existing meritorious programs. Although the visibility of such a large, consolidated program would seem to be clearly justified, the hybrid vigor that results from various perspectives would be lost. In other words, consolidation would probably reduce the various agencies' broad range of approaches—and solutions—to the problems faced by people with disabling conditions. Finally, although the creation of a new agency or department with such a mandate is intriguing for many reasons, in-

Suggested Citation:"10 ORGANIZATION AND ADMINISTRATION OF FEDERAL RESEARCH PROGRAMS." Institute of Medicine. 1997. Enabling America: Assessing the Role of Rehabilitation Science and Engineering. Washington, DC: The National Academies Press. doi: 10.17226/5799.
×

cluding the fact that it might facilitate the establishment of an integrated program with clear goals and vision, the fiscal and political realities of creating a new program of this size are probably unsurmountable at present.

Option 3: Move NIDRR to Create ADRR

The overall problems of coordination, visibility, support, and monitoring of federal programs are too large to be resolved by adjustments to the NIDRR program alone (Option 1). Consolidation into a single agency (Option 2) is similarly unacceptable, although for different reasons. A middle-ground approach is proposed as Option 3. This option would (1) move NIDRR to DHHS creating an Agency on Disability and Rehabilitation Research (ADRR) within DHHS that would coordinate the various federal programs, (2) establish a small set-aside fund from the agencies involved in rehabilitation research to support the coordination effort and help ensure participation, and (3) elevate other programs within their respective agencies to enhance visibility.

The committee believes that the unique mission of NIDRR needs to be preserved because it is fundamentally important to the research agenda of rehabilitation science and engineering espoused by this committee. NIDRR has vigorously pursued this mission as best as possible within the constraints of its administrative location. Moving NIDRR from U.S. Department of Education to DHHS, however, would facilitate, if not require, the implementation of a new system for grant application, review, and management—a major benefit to improving the quality of research.

There are three initial advantages and benefits to be gained from moving NIDRR to DHHS. First of all, the move would be an opportunity to review the program's mission and personnel, and make appropriate changes to the program's structure. Secondly, it would move NIDRR closer administratively to NIH and CDC, which should facilitate coordination among the agencies. Finally, it would allow NIDRR to amend its peer review process. In an environment more conducive to research, NIDRR could establish larger, more permanent peer review panels. These larger panels would allow review of a more heterogeneous mix of applications, and allow for broader representation (including people with disabling conditions) on the review panels. With increased investment in peer review, staff could make more site visits, making the peer review process more rigorous, attracting high quality scientists interested in rehabilitation-related research. Standing committees would have more time for reviewing and need less time getting to know the process.

After carefully considering all three options, the committee arrived at the conclusions and recommendations that follow.

Suggested Citation:"10 ORGANIZATION AND ADMINISTRATION OF FEDERAL RESEARCH PROGRAMS." Institute of Medicine. 1997. Enabling America: Assessing the Role of Rehabilitation Science and Engineering. Washington, DC: The National Academies Press. doi: 10.17226/5799.
×

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

Suggested Citation:"10 ORGANIZATION AND ADMINISTRATION OF FEDERAL RESEARCH PROGRAMS." Institute of Medicine. 1997. Enabling America: Assessing the Role of Rehabilitation Science and Engineering. Washington, DC: The National Academies Press. doi: 10.17226/5799.
×

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

Suggested Citation:"10 ORGANIZATION AND ADMINISTRATION OF FEDERAL RESEARCH PROGRAMS." Institute of Medicine. 1997. Enabling America: Assessing the Role of Rehabilitation Science and Engineering. Washington, DC: The National Academies Press. doi: 10.17226/5799.
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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

 

 

 

 

 

Suggested Citation:"10 ORGANIZATION AND ADMINISTRATION OF FEDERAL RESEARCH PROGRAMS." Institute of Medicine. 1997. Enabling America: Assessing the Role of Rehabilitation Science and Engineering. Washington, DC: The National Academies Press. doi: 10.17226/5799.
×

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.

Suggested Citation:"10 ORGANIZATION AND ADMINISTRATION OF FEDERAL RESEARCH PROGRAMS." Institute of Medicine. 1997. Enabling America: Assessing the Role of Rehabilitation Science and Engineering. Washington, DC: The National Academies Press. doi: 10.17226/5799.
×

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.

Suggested Citation:"10 ORGANIZATION AND ADMINISTRATION OF FEDERAL RESEARCH PROGRAMS." Institute of Medicine. 1997. Enabling America: Assessing the Role of Rehabilitation Science and Engineering. Washington, DC: The National Academies Press. doi: 10.17226/5799.
×
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-

Suggested Citation:"10 ORGANIZATION AND ADMINISTRATION OF FEDERAL RESEARCH PROGRAMS." Institute of Medicine. 1997. Enabling America: Assessing the Role of Rehabilitation Science and Engineering. Washington, DC: The National Academies Press. doi: 10.17226/5799.
×

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

Suggested Citation:"10 ORGANIZATION AND ADMINISTRATION OF FEDERAL RESEARCH PROGRAMS." Institute of Medicine. 1997. Enabling America: Assessing the Role of Rehabilitation Science and Engineering. Washington, DC: The National Academies Press. doi: 10.17226/5799.
×

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

Suggested Citation:"10 ORGANIZATION AND ADMINISTRATION OF FEDERAL RESEARCH PROGRAMS." Institute of Medicine. 1997. Enabling America: Assessing the Role of Rehabilitation Science and Engineering. Washington, DC: The National Academies Press. doi: 10.17226/5799.
×

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

Suggested Citation:"10 ORGANIZATION AND ADMINISTRATION OF FEDERAL RESEARCH PROGRAMS." Institute of Medicine. 1997. Enabling America: Assessing the Role of Rehabilitation Science and Engineering. Washington, DC: The National Academies Press. doi: 10.17226/5799.
×

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

Suggested Citation:"10 ORGANIZATION AND ADMINISTRATION OF FEDERAL RESEARCH PROGRAMS." Institute of Medicine. 1997. Enabling America: Assessing the Role of Rehabilitation Science and Engineering. Washington, DC: The National Academies Press. doi: 10.17226/5799.
×

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.

Suggested Citation:"10 ORGANIZATION AND ADMINISTRATION OF FEDERAL RESEARCH PROGRAMS." Institute of Medicine. 1997. Enabling America: Assessing the Role of Rehabilitation Science and Engineering. Washington, DC: The National Academies Press. doi: 10.17226/5799.
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Suggested Citation:"10 ORGANIZATION AND ADMINISTRATION OF FEDERAL RESEARCH PROGRAMS." Institute of Medicine. 1997. Enabling America: Assessing the Role of Rehabilitation Science and Engineering. Washington, DC: The National Academies Press. doi: 10.17226/5799.
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Next: 11 OVERARCHING RECOMMENDATIONS AND PRIORITIES »
Enabling America: Assessing the Role of Rehabilitation Science and Engineering Get This Book
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The most recent high-profile advocate for Americans with disabilities, actor Christopher Reeve, has highlighted for the public the economic and social costs of disability and the importance of rehabilitation. Enabling America is a major analysis of the field of rehabilitation science and engineering. The book explains how to achieve recognition for this evolving field of study, how to set priorities, and how to improve the organization and administration of the numerous federal research programs in this area.

The committee introduces the "enabling-disability process" model, which enhances the concepts of disability and rehabilitation, and reviews what is known and what research priorities are emerging in the areas of:

  • Pathology and impairment, including differences between children and adults.
  • Functional limitations—in a person's ability to eat or walk, for example.
  • Disability as the interaction between a person's pathologies, impairments, and functional limitations and the surrounding physical and social environments.

This landmark volume will be of special interest to anyone involved in rehabilitation science and engineering: federal policymakers, rehabilitation practitioners and administrators, researchers, and advocates for persons with disabilities.

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