[Federal Register Volume 64, Number 161 (Friday, August 20, 1999)] [Notices] [Pages 45744-45784] From the Federal Register Online via the Government Publishing Office [www.gpo.gov] [FR Doc No: 99-21537] [[Page 45743]] _______________________________________________________________________ Part V Department of Education _______________________________________________________________________ National Institute on Disability and Rehabilitation Research; Notices of Final Long-Range Plan for Fiscal Years 1999-2004 Federal Register / Vol. 64, No. 161 / Friday, August 20, 1999 / Notices [[Page 45744]] DEPARTMENT OF EDUCATION National Institute on Disability and Rehabilitation Research; Notice of Final Long-Range Plan for Fiscal Years 1999-2004 SUMMARY: The Secretary presents a Final Long-Range Plan (the Plan) for the National Institute on Disability and Rehabilitation Research (NIDRR) for fiscal years (FY) 1999-2004. As required by the Rehabilitation Act of 1973, as amended, the Secretary takes this action to outline priorities for rehabilitation research, demonstration projects, training, and related activities, and to explain the basis for these priorities. DATES: This Long-Range Plan is effective September 20, 1999. FOR FURTHER INFORMATION CONTACT: Donna Nangle, U.S. Department of Education, 400 Maryland Avenue SW, Room 3423 Switzer Building, Washington, DC 20202. Telephone: (202) 205-4880. If you use a telecommunications device for the deaf (TDD), you may call the TDD number at (202) 205-4475. Internet: Donna__N[email protected] Individuals with disabilities may obtain this document in an alternate format (e.g., Braille, large print, audiotape, or computer diskette) on request to the contact person listed in the preceding paragraph. SUPPLEMENTARY INFORMATION: The final Pland presents a five-year agenda anchored in consumer goals and scientific initiatives. The Plan has several distinct purposes: (1) To set broad general directions that will guide NIDRR's policies and use of resources as the field of disability enters the 21st century; (2) To establish objectives for research and dissemination that will improve the lives of individuals with disabilities and from which annual research priorities can be formulated; (3) To describe a system for operationalizing the Plan in terms of annual priorities, evaluation of the implementation of the Plan, and updates of the Plan as necessary; and (4) To direct new emphasis to the management and administration of the research endeavor. The Plan was developed with the guidance of a distinguished group of NIDRR constituents--individuals with disabilities and their family members and advocates, service providers, researchers, educators, administrators, and policymakers. The authority for the Secretary to establish a 5-year Plan is contained in sections 202(h) of the Rehabilitation Act of 1973, as amended (29 U.S.C. 762(h). On October 26, 1998 we published a notice of proposed Long-Range Plan for fiscal years 1999-2004 (63 FR 57190). Summary of Comments and Responses In response to our invitation in the notice of proposed Long-Range Plan, we received 78 letters commenting on the Plan. Most of these comments stated support for the Plan, particularly in its conceptual approach to disablement and enablement. Some comments requested the addition of specific research topics or strategies, while others urged NIDRR to elaborate on or further emphasize some research areas. In responding to these suggestions, NIDRR has attempted to incorporate many of the compelling ideas, while at the same time not adding significantly to the length of the Plan or diverting from the concept of a 5-year research agenda. NIDRR appreciates the thoughtful nature of many of the comments and believes that will be useful in future planning efforts. An analysis of the comments and of the changes in the Plan since publication of the proposed Plan follows. General Comments Comment: Several commenters requested that NIDRR either repeat certain concepts, such as self-direction, in all segments of the Plan or add detailed elaboration to some concepts. Discussion: The Secretary believes that such an approach would unduly lengthen the Plan. Since it is clear that the commenters identified and understood that those concepts are included in the Plan, these additions were not made. Changes: None. Comment: One commenter emphasized the need for controlled experimental studies to evaluate rehabilitation interventions at both the individual and environmental levels. This commenter noted that the proposed plan appears to reject those studies in favor of descriptive and qualitative studies that would not suffice to determine causality or efficacy. Discussion: NIDRR agrees that the rehabilitation field would benefit from increased use of controlled experiments. At the same time, NIDRR acknowledges the concerns of the Long-Range Plan Steering Committee about the increasing difficulty of conducting those studies in the disability field. These concerns include ethical considerations in withholding or delaying promising interventions; difficulties in obtaining samples of sufficient size; abbreviated access to sample populations; and the cost of this type of research. NIDRR also recognizes the important role of other Federal agencies in supporting controlled studies, particularly in medical rehabilitation research. NIDRR is committed to improving the value of disability research by strengthening the methodological tools in use. This includes controlled experiments, if appropriate and possible, and also more rigorous descriptive and qualitative research, appropriately used to suggest hypotheses, build theory, and reflect consumer concerns. It should also be noted that the Secretary generally does not prescribe methodologies, but rather presents rehabilitation issues and leaves decisions about methods to the applicants for research support and to the peer reviewers. NIDRR also supports the development of improved methodological tools for the disability research field and training new researchers in the use of those tools. Changes: The Plan has been modified to indicate the importance of controlled experiments, particularly to evaluate efficacy and outcomes of rehabilitative interventions. Comment: Two commenters noted that the aging of the population has significant implications for disability and that the issues of aging should be emphasized more in the Plan, perhaps through a separate chapter. Discussion: The importance of an aging population is noted throughout the Plan. For example, aging of the population contributes to the emerging universe of disability and will affect not only the prevalence of disability but also the frequency of certain conditions and the consequences of those conditions for independence and participation. The aging of the population, in conjunction with changes in certain social policies, is resulting in greater demand for continued employment among older age groups. The focus on a continuum of care and long-term care acknowledges the aging population, as does specific reference to the technology needs and preferences of older persons and their ability to benefit from universal design. There is also clear reference to the study of aging in special populations, such as individuals with mental retardation. Participants in the development of this Plan elected to focus on outcomes desired by all population groups of disabled persons, rather than the population groups themselves. NIDRR will consider more intensive and extensive focus on aging and disability for a future Plan. Changes: None. Comment: On commenter noted that some parts of the NIDRR plan are [[Page 45745]] disability-specific, while other sections or topics are cross- disability or address multiple disabilities. The commenter asked for a rationale for this variation. Discussion: NIDRR believes that, in some cases, research is best organized around a single disability. Examples include research on interventions specific to certain conditions or their complications. Medical research or the development of technologies to replace functions such as mobility or vision, for example, may require equipment or expertise that is organized around certain body systems or types of functional loss. Other research may require access to substantial populations of individuals with similar impairments. However, research on general issues of participation, service delivery, and employment opportunities may consider individuals from many disability populations. NIDRR approaches these topics as comprehensively as possible to avoid fragmenting beneficiary populations. In some cases, specific disabilities are referenced as examples only. Changes: None. Comment: One commenter suggested that NIDRR should define parents of children with disabilities as consumers and ensure that research will be conducted on the population over a longer time period. A second commenter urged that research on families be specified in all areas of the Plan, particularly employment, transition, and access to services. Discussion: the Secretary agrees that research on families of disabled children that provides useful knowledge to support these families. In fiscal year 1998, NIDRR funded a Rehabilitation Research and Training Center (RRTC) on families of children with disabilities, with a funding period of 60 months. In 1999, NIDRR will fund an RRTC to continue research and training on families of children with serious behavior disorders. Many other centers and projects also address in part issues related to families of disabled children. One center provides support for disabled adults in their family role. The role of families in rehabilitation is widely acknowledged. NIDRR believes this is clear indication of its commitment to research on families throughout the period of this Plan. Changes: None. Comment: Several commenters noted that the Plan did not address certain areas of NIDRR activity, including international activities, interagency collaboration, peer review, and evaluation activities. Discussion: NIDRR regards these activities as integral parts of its Plan for the next five years. Changes: A final chapter entitled Enhancing NIDRR's Management of Research has been added to the Plan. This chapter includes international research, the Interagency Committee on Disability Research (ICDR), improvements to peer review, and NIDRR's program evaluation and continuous participatory planning activities. Comment: Two commenters suggested that it would be important to estimate the costs of implementing the Plan. Discussion: NIDRR believes this would be a useful but complex activity. NIDRR recognizes not only the difficulty of estimating future costs, but also that other research entities will play a role in accomplishing some of the objectives outlined in the Plan. NIDRR also is mindful of the nature of the annual federal budget setting process and believes it would be inappropriate for NIDRR to preempt that process. Changes: None. Introduction and Background Comment: Several commenters suggested that the proposed Plan does not stress sufficiently the significance of NIDRR research to persons with cognitive disabilities, particularly those with mental retardation, and specifically recommended that examples of improvements through research for this population be included. Discussion: NIDRR agrees that important improvements in the quality of life and integration into the community for individuals experiencing cognitive impairment have been achieved through research, including research sponsored by NIDRR. Changes: The Plan has been amended to reference research-based improvements for this population. Comment: One commenter stated that the description of Rehabilitation Research and Training Centers (RRTCs) appeared to emphasize characteristics typical of academic institutions that might indicate a bias in favor of funding RRTCs at academic institutions. Discussion: The statute clearly spells out the qualifications and eligibility criteria for an RRTC. In funding RRTCs, NIDRR implements the statute by funding RRTCs at organizations that meet the statutory criteria and whose applications are highly rated by independent peer review panels. Changes: None. Dimensions of Disability Comment: Several commenters discussed the inadequacy of demographic data related to individuals with disabilities, including deficiencies in estimating the prevalence of low-incidence disabilities, or the prevalence of disability in discrete ethnic sub-populations such as Pacific Islanders or individual American Indian or Alaskan native tribes. Two commenters suggested that NIDRR work toward the creation and adoption of a minimum data set about disability that could be included in all Federal surveys and data collection efforts. One urged that NIDRR undertake surveys to create demographic databases on certain minority populations. Discussion: The Plan recognizes the inadequacy of existing national databases about disability. NIDRR does not have a mission or resources to undertake national or regional surveys to generate comprehensive primary demographic data files. However, NIDRR believes that smaller scale, intensive studies of the distribution of disability in discrete populations such as racial or ethnic sub-populations is an appropriate topic for exploration under field initiated projects. In addition, NIDRR is aware of the need to incorporate appropriate questions about disability into all relevant Federal data collection efforts and is working with other Federal agencies to achieve this objective. Changes: The new final chapter on NIDRR management initiatives discusses the Interagency Committee on Disability Research (ICDR) as a mechanism for working to improve Federal data collection efforts regarding disability. Comment: Several commenters noted that women with disabilities constitute a population whose circumstances and needs are substantially different from those of men with disabilities, and request that disabled women be identified as a population for targeted study, perhaps under the category of emergent disability populations. Discussion: NIDRR supports research on problems that are unique to, or more significant for, women with disabilities,including areas as diverse as reproduction and sexuality, fibromyalgia, multiple sclerosis, violence and abuse, and childcare. NIDRR will continue to support research on specific conditions affecting women and girls with disabilities. Changes: The Plan has been amended to include specific reference to women with disabilities under appropriate topics. [[Page 45746]] Comment: Two commenters urged that NIDRR specifically include chronic fatigue syndrome and multiple chemical sensitivies in its description of emerging disabilities. Discussion: The discussion of emergent disabilities in the Plan was intended to be illustrative of the concept of a changing disability population, with new conditions or impairments emerging to create a new or greater need for rehabilitation. The selection of specific conditions to be addressed in this context will be made either, in the case of field initiated projects, by applicants setting forth the need for study and peer reviewers evaluating the proposals or, in the case of directed research, through NIDRR's participatory priority development process. Changes: The discussion of emergent disabilities has been amended to suggest that chronic fatigue as well as multiple chemical sensitivity may be investigated as emergent disabilities. Comment: One commenter stated that the Plan should include specific references to the involvement of State Vocational Rehabilitation (VR) agencies in setting annual research priorities. Discussion: It is NIDRR's practice to involve a full spectrum of relevant stakeholders in the formulation of the annual priorities. This certainly includes State Vocational rehabilitation agencies as relevant stakeholders. Changes: The final section of the chapter on enhancing NIDRR management, which has been added to the Plan, specifies a broad range of constitutents to be involved in continuous participatory planning, including State Vocational Rehabilitation Agencies. Comment: Several commenters remarked on data excerpted from the National Health Interview Survey, questioning whether the delineation of only two ethnic groups indicated that only white and African- American individuals were expected to benefit from the Plan. Discussion: Within this chapter of the Plan, NIDRR has commented on the inadequacy of national data sets to elucidate disability conditions among a full range of ethnic groups. Table Three in the Plan was intended merely to illustrate that there are differences along ethnic lines, and at the same time it illustrates that the national data sets are inadequate. NIDRR is committed, as is emphasized in the Plan, to the exploration of the impact of ethnic background and associated characteristics on disability. Changes: None. Comment: Several commenters remarked on the need for demographic data useful to industry in estimating and identifying markets for assistive technology and other products. Discussion: NIDRR agrees that there is a dearth of reliable data on disability for market research purposes. NIDRR's data centers are frequently queried by private industry sources seeking to estimate markets. Changes: NIDRR has added a reference to the need for market related data in this chapter. Employment Outcomes Comment: One letter of comment recommended that personal assistance services be cited in all areas of the Plan in which they could be relevant, such as the sections on employment, health, and technology. Discussion: NIDRR recognizes the potential significance of personal assistance services in employment and health maintenance, as well as in independent living and community integration. However in the interest of brevity, NIDRR has elected to discuss personal assistance services in only one chapter, referring therein to the role of PAS in employment, health maintenance and independent living. Changes: None. Comment: One commenter recommended that the improvement of the State and Federal vocational rehabilitation program be an integral part of NIDRR's research in employment trends and a target for the dissemination of that research. Discussion: The chapter on Employment Outcomes includes enhancement of the State and Federal vocational rehabilitation program as a key research objective. The chapter on knowledge dissemination refers to the importance of developing partnerships with state vocational rehabilitation agencies in order to tailor dissemination activities to their specific needs. Changes: None. Comment: Several commenters suggested an emphasis on assistive technology and telecommunications technology as job accommodations to improve employment outcomes. Discussion: Development of work-related technological devices and work site modifications have been key elements of NIDRR's engineering research program for many years. NIDRR has also supported specialized dissemination efforts to make employers and vocational rehabilitation counselors aware of technology appropriate for the workplace. Changes: The Plan now includes references to technological supports in the employment outcomes chapter and to employment as an intended outcome in the chapter on technology for access and function. Comment: One commenter urged a more explicit and extensive reference to research on the role of self-employment and small business ownership in improving long-term employment outcomes for individuals with disabilities. Discussion: In Chapter 3, Employment Outcomes, NIDRR notes the alterations in the labor market that have resulted in a larger contingent workforce; more contract work, temporary or part-time positions and consultancies, and the decline in the percentage of stable jobs with full benefits. Self-employment, entrepreneurship, telecommuting, and home-based employment are all options to be evaluated for various segments of the disability population. At present, not enough is known about the characteristics of individuals or occupations that lend themselves to these solutions, nor is there definitive evaluation of these options in terms of financial stability and security, long-term outcomes, and consumer satisfaction. Changes: The plan, in Chapter 3, now includes the evaluation of these options as a priority under ``Employer and Workplace Issues'' and a reference to the role of the State and Federal VR system in using these approaches with individual consumers. Health and Function Comment: Several commenters emphasized the significance of pain and fatigue, including Chronic Fatigue Syndrome or Chronic Fatigue Immune Deficiency Syndrome (CFIDS), in the rehabilitation and quality of life of persons with disabilities. They pointed out that many disabled individuals have chronic or deteriorating conditions. Discussion: NIDRR agrees that chronic pain, chronic fatigue, and impaired stamina are common secondary complications of disability and should be addressed. Change: The Plan has been amended to include references to pain and fatigue in this chapter, and reference to chronic fatigue syndrome as a potential emerging disability in the Dimensions of Disability chapter. Comment: One commenter discussed the significance of obesity to health and disability, and urged that NIDRR direct research to this topic. Discussion: NIDRR agrees that obesity is a significant risk factor for both primary disability and secondary conditions, and may complicate efforts at rehabilitation. As NIDRR does not have a mission in the primary prevention of disability or in the [[Page 45747]] maintenance of health in non-disabled populations, NIDRR will address the issue of obesity in terms of its impact on secondary conditions and health maintenance. Changes: The Plan has been amended to include obesity in the list of secondary conditions. Comment: One commenter noted that the Plan does not address dental and oral health interventions or services delivery, and recommends that research in these areas be added to the Plan. Discussion: NIDRR acknowledges that the presence of disability may confound the delivery of oral health care, and that the presence of dental problems may contribute to secondary conditions and may, in itself, interfere with successful employment and participation in the community. In addition, certain craniofacial or maxillofacial conditions may themselves constitute disability. Changes: The Plan has been amended to recognize the importance of research on dental and oral health interventions and service delivery. Comment: Several commenters noted that the chapter on health and function appears to emphasize physical disabilities, with few references to cognitive, behavioral, or sensory impairments. Discussion: It is NIDRR's intent to exclude research on the full range of disabilities from its agenda. Much of the research that NIDRR supports relative to these cited disability populations is in the Plan's chapters on Community Integration and Independent Living, Technology for Access and Function and Employment. However, within the scope of the health and function chapter, health case service delivery and rehabilitation interventions are also important to these populations. Changes: NIDRR has added references to individuals with sensory, behavioral or cognitive impairments, or a combination of those impairments in the chapter on Health and Function. Comment: Several commenters made suggestions about the importance of outcome measures in medical rehabilitation, including the recommendation that priority should be given to the refinement of existing measures of medical rehabilitation effectiveness to make them more applicable across the wide range of disability populations. Discussion: NIDRR agrees with the need for improved measures of the effectiveness of rehabilitation interventions across disabilities and in a variety of settings. Changes: An additional priority has been inserted under the heading ``Research on Rehabilitation Outcomes'' to focus on measures of effectiveness. Technology for Access and Function Comment: Several commenters noted their agreement with the concept of universal design. Some of these commenters suggested that the Plan did not sufficiently recognize the importance of accessible housing through universal design. A number of these commenters also discussed the difficulties of infusing universal design concepts into private industry and suggested a variety of strategies. Discussion: The Plan indicates a commitment to research on universal design in accessible buildings, including housing, over the next five years. The Plan also includes a recognition of the barriers to general acceptance of universal design and proposes to support activities to reduce the barriers. NIDRR acknowledges that marketing of universal design concepts is different from technology transfer of devices and techniques, and believes the Plan indicates that this is a component of work to be supported by NIDRR. Changes: None. Comment: Several commenters noted the rapid developments in information technology and the World Wide Web, and the emergence of convergent media combing aspects of computers and televisions. These commenters also emphasized the role of universal design in information technologies. Discussion: NIDRR is currently providing support to the World Wide Web Consortium (W3C) and also maintains a major commitment to the infusion of universal design principles into information technology and the telecommunications infrastructure. NIDRR believes this commitment has already been expressed in the Plan. Changes: None. Comment: Two commenters stressed the need to develop technologies to assist in the performance of cognitive functions, for individuals with impairments resulting from stroke, mental retardation, and traumatic brain injury, for example, and observed that this research direction was absent from the Plan. Discussion: NIDRR agrees that there are important opportunities to enhance cognitive functioning through neural prostheses and assistive technology to perform cognitive functions. This area represents a very significant scientific challenge and opportunity. Changes: Research on technology to improve cognitive performance for individuals with mental retardation as well as cognitive deficits from other causes has been added to the Plan. Comment: Two commenters recommended that NIDRR consider appointing various types of advisory councils, including an industry advisory council to assist in the formulation of NIDRR's plans and priorities in the area of assistive technology and universal design. Discussion: NIDRR continuously seeks input from a broad constituency, including industry. NIDRR recognizes the need to have industry more closely involved with the research activities of its grantees. However, because advisory councils are governed by the Federal Advisory Council Act (FACA), this Plan cannot commit NIDRR to establish an advisory council. Changes: None. Comment: One commenter suggested that NIDRR monitor the activities of Federal agencies in the implementation of section 508 of the Rehabilitation Act. Discussion: The Office of Special Education and Rehabilitative Services has placed a high priority on strategies to ensure full implementation of section 508. The Access Board and the General Services Administration have responsibility for providing technical assistance on Section 508. NIDRR will cooperate with those agencies in the provision of technical assistance as needed. NIDRR has no authority to monitor other Federal agencies in their implementation of Section 508. Changes: None. Comment: One commenter stated support for the development of appropriate quality assurance mechanisms for assistive technology, and asked for further elaboration addressing the new provisions of Section 204 of the Rehabilitation Act, as amended. Discussion: Section 204(17)(A) provides that research grants may be used to conduct a research program related to quality assurance in the area of rehabilitation technology. NIDRR is very concerned with this issue, and has added language to the Plan to implement suggested activities under this section of the statute. Changes: References to the development of evaluation methodologies and identification of outcome measurement models have been added in Chapter 7; reference to models for service provider training has been added to Chapter 9, and reference to tools to enhance consumer decision-making about technology has been added to Chapter 6. Comment: Two commenters stated that it was inappropriate to couple the terms ``information technology'' and [[Page 45748]] ``telecommunications'' throughout this Chapter. The commenters argued that while it is true that, in the future, society will be using the same appliances for both, the core issues to be addressed are quite different. Discussion: NIDRR recognizes that while these areas are related, the research issues are different. Changes: The Plan has been modified to indicate that these two areas, while converging, have some significantly different research issues. Some of these research issues are listed in the Plan to illustrate these differences. Comment: One commenter suggested that the priorities related to information technology should include some reference to research on new types of computers and display technologies. Discussion: NIDRR agrees that the rapid pace of developments in this area generates many more priorities for research, and that the relative emphasis on various priority topics may change more than once over the course of this Plan. Therefore, NIDRR refrained from detailing a large number of priorities in this area. However, it may be helpful to specify that there will be some priority placed on ensuring accessibility of new computer technologies emerging onto the market. Changes: New priorities in information technology now include references to research on the accessibility of wearable and implantable computers and personal systems, 3-D display technologies, and cognitive factors such as language and comprehension levels. Comment: One commenter reminded NIDRR that it is important to ensure that assistive technology is culturally responsive and appropriate for use in rural and isolated areas. The commenter urged the creation of an explicit project to develop technology to address the needs of specific cultural groups. Discussion: NIDRR agrees that there is a danger that assistive technology will not be acquired or used if it is not sensitive to cultural and life-style concerns. However, NIDRR believes that it is important to infuse those considerations into all of its technology research and development. No one project could develop all types of technology for all cultural minorities. Furthermore, NIDRR's statute requires that each applicant for funding specify how its proposed activities will address the needs of disabled individuals from diverse minority backgrounds. Changes: NIDRR has inserted a general admonition in this chapter concerning the need to consider variations in culture and life-style in the design and development of assistive technology, and in universal design of public technological systems as well. Independent Living and Community Integration Comment: A number of commenters discussed the issue of home ownership and affordable housing. Many of these comments focused on assisting persons with mental retardation or other developmental disabilities to achieve home ownership. Many of the comments urged NIDRR to replace an institute for this purpose that was formerly supported by another Federal agency, or to create a Rehabilitation Research and Training Center for this purpose. Discussion: NIDRR recognizes the importance of accessible housing in the community in its discussion of universal design and accessible housing and also in its focus on self-determination and research on physical inclusion. The Plan discusses the identification and evaluation of models that facilitate physical inclusion, including housing models that are consistent with consumer choice. As NIDRR is a research Institute, it is not in a position to implement service and advocacy demonstrations that were funded elsewhere. NIDRR does believe that research questions related to housing are potential areas for research investigation under its program of Field Initiated Projects. Changes: None. Comment: Two commenters remarked that independent living services for older individuals who are blind were not specified as subjects of research priorities. One commenter noted commonality of objectives between these programs and other independent living services programs. Discussion: NIDRR prefers to address research on community integration and independent living globally and, whenever possible, across disabilities. Because, as the commenter noted, the objectives of the independent living services for older blind persons are similar to the objectives of independent living programs generally, no priority restricted to those programs has been predetermined. Research on this topic is appropriate for conduct under the Field-Initiated Projects program. Changes: None. Comment: One commenter observed that institutions and nursing homes are used frequently and inappropriately for placements of individuals with traumatic brain injury, and urged that NIDRR support investigations of the scope of this problem and develop other options for community integration. Discussion: NIDRR supports research on community integration for individuals with traumatic brain injury, as well as for those with other disabilities. This topic is one that can be investigated within the scope of NIDRR's research agenda on community integration, and further specification is not necessary. Changes: None. Knowledge Dissemination and Utilization Comment: One commenter stated that the Plan's emphasis on accessible media, which is lauded, points up the need for research on Braille literacy and requests that the Plan include a specific priority in that area. Discussion: NIDRR has established key objectives in such areas as employment, function, access, and integration. NIDRR's agenda responds to the Department of Education goals supporting lifelong learning and preparation for employment in a competitive world economy. NIDRR finds it impossible to detail every specific tactic to reach those objectives for every individual disability population. Furthermore, in line with key recommendations of the Long-Range Plan Steering Committee, NIDRR plans to increase its emphasis on Field-Initiated projects, meaning that there will be fewer resources for discrete prioritized research projects. Thus, there are many important topics such as Braille literacy that may be addressed under the Field-Initiated program. In addition, in the continuous participatory planning process, there will be an opportunity to consider these recommendations in planning future center or project priorities. Changes: None. Capacity Building Comment: One commenter recommended that funds earmarked under Section 21 of the Rehabilitation Act for minority institutions should also be directed to other institutions that are serving some minority students. Discussion: The statute is specific about the uses of these funds and the eligibility criteria. The commenter appears to be requesting a legislative change that is beyond the scope of this Plan. Changes: None. Comment: Two commenters discuss the need to use distance learning strategies in training and in the dissemination of information and recommended that this approach be specified in the plan. Discussion: NIDRR is currently supporting pioneering research into [[Page 45749]] telerehabilitation and supports distance learning approaches to training in its ADA program and several of its RRTCs. While the commenter correctly noted that NIDRR's primary mission is not training, NIDRR does agree that innovative approaches to capacity building are necessary. Changes: Evaluation of the appropriateness and effectiveness of web-based training and distance learning models to increase capacity for rehabilitation research has been added as a priority in this chapter. Comment: One commenter noted that there was no reference to Rehabilitation Engineering Research Centers (RERCs) as mechanisms for advanced training of researchers, and recommended that RERCs be included in this activity. Discussion: Historically, RERCs have not had the explicit statutory mission for training that was part of other NIDRR funded centers. However, it is certainly true that the need for individuals trained in technological and engineering research is greater than ever, and NIDRR agrees that the RERCs must be involved increasingly in researcher, consumer, and provider training. Changes: Reference to the RERCs as a mechanism for advanced research training has been added. Electronic Access to this Document You may view this document, as well as all other Department of Education documents published in the Federal Register, in text or Adobe Portable Document Format (PDF) on the World Wide Web at either of the following sites: http://ocfo.ed.gov/fedreg.htm http://www.ed.gov/news.html To use the PDF you must have the Adobe Acrobat Reader Program with Search, which is available free at either of the previous sites. If you have questions about using the PDF, call the U.S. Government Printing Office, toll free, at 1-888-293-6498; or in the Washington, DC., area at (202) 512-1530. Note: The official version of this document is the document published in the Federal Register. Free Internet access to the official edition of the Federal Register and the Code of Federal Regulations is available on GPO access at: http:// www.access.gpo.gov/nara/index.html Applicable Program Regulations 34 CFR Parts 350, 356, and 359. Program Authority: 29 U.S.C. 760-764. Dated: August 13, 1999. Judith E. Heumann, Assistant Secretary for Special Education and Rehabilitation Services. NIDRR Long-Range Plan Long Range Plan Table of Contents Section One: Background Chapter 1: Introduction and Background Chapter 2: Dimensions of Disability Section Two: NIDRR Research Agenda Chapter 3: Employment Outcomes Chapter 4: Health and Function Chapter 5: Technology for Access and Function Chapter 6: Independent Living and Community integration Chapter 7: Associated Disability Research Areas Section Three: Priorities For Related Activities Chapter 8: Knowledge Dissemination and Utilization Chapter 9: Capacity Building For Rehabilitation Research Chapter 10: Strategies For Research Management References Section One Chapter 1: Introduction and Background ``Research has the potential to reinvent the future for millions of people with disabilities and their families'' (Richard W. Riley, U.S. Secretary of Education). Two developments have converged to enhance the significance of disability research. First, breakthroughs in biomedical and technological sciences have changed the nature of work and community life. As these breakthroughs provide the potential for longer and more fulfilling lives for individuals with disabilities, they reinforce the second major development--successful independent living and civil rights advocacy by disabled persons. this intersection of scientific progress and empowerment of disabled persons has generated momentum for disability research. These developments highlight the importance of more fully integrating disability research into the mainstream of U.S. science and technology policy, and into the Nation's economic and health care policies. An estimated 43 million Americans are significantly limited in their capacity to participate fully in work, education, family, or community life because they have a physical, cognitive, or emotional condition that requires societal accommodation. Public Law 101-336, the Americans with Disabilities Act (ADA) of 1990, declares that individuals with disabilities have fundamental rights of equal access to public accommodations, employment, transportation, and telecommunications. The recognition of these rights, and of society's obligation to facilitate their attainment, provides the opportunity for major improvements in the daily lives of individuals with disabilities. It is the mission of the National Institute on Disability and Rehabilitation Research (NIDRR) to generate, disseminate, and promote the full use of new knowledge that will improve substantially the options for disabled individuals to perform regular activities in the community, and the capacity of society to provide full opportunities and appropriate supports for its disabled citizens. NIDRR's Statutory Purpose The inception of a Federal rehabilitation research program was part of the legacy of the late Mary E. Switzer, pioneering director of the Federal-State vocational rehabilitation program. By establishing NIDRR \1\ in 1978, through Amendments to the Rehabilitation Act of 1973 (Public Law 93-112), Congress realized Switzer's vision and created a research institute in the public interest. As such, NIDRR must generate scientifically based knowledge that furthers the values and goals of the disability community, the knowledge needs of service providers, and the creation of rational public policy. --------------------------------------------------------------------------- \1\ Established as the National Institute of Handicapped Research, the Institute's name was changed to NIDRR by the 1986 Amendments to the Rehabilitation Act. --------------------------------------------------------------------------- In confounding NIDRR, Congress recognized both the opportunities for technological and scientific advances to improve the lives of individuals with disabilities and the need for a comprehensive and coordinated approach to research, development, demonstration, information dissemination, and training. The Rehabilitation Act of 1973, as amended (with significant changes in 1992 and 1998), charged this Institute with the responsibility to provide a comprehensive and coordinated program of research and related activities to maximize the full inclusion and social integration, employment, and independent living of individuals of all ages with disabilities, with particular emphasis on improving the coordination and effectiveness of services authorized under the Act. Related activities were mandated to include the widespread dissemination of research-generated knowledge and practical information to rehabilitation [[Page 45750]] professionals, individuals with disabilities, researchers, and others; the promotion of the transfer of rehabilitation technology; and an increase in opportunities for researchers who are individuals with disabilities or members of minority groups. NIDRR is ideally positioned to facilitate the transfer of new knowledge into practice given its administrative co-location with two major service programs--the Rehabilitation Services Administration (RSA) and the Office of Special Education Programs (OSEP)--in the Office of Special Education and Rehabilitative Services (OSERS). NIDRR's linkage to the greater science community through its leadership of the Interagency Committee on Disability Research (ICDR) affords an opportunity to facilitate the transfer of advances in basic research into the agenda for applied research and knowledge diffusion. To further advance work in the field of applied research, the legislation requires a Plan,\2\ updated every five years, describing NIDRR's future research agenda. This Long-Range Plan presents a five- year agenda anchored in consumer goals and scientific initiatives. The plan has several distinct purposes: --------------------------------------------------------------------------- \2\ As a component of the Department of Education within OSERS, NIDRR is guided by the Department's Strategic Plan, the OSER's Strategic Plan, and NIDRR's own strategic goals and objectives as laid out in its performance plan for the Government Performance and Results Act (GPRA). The Rehabilitation Act, however, calls for a plan from NIDRR--one that identifies research needs and sets forth priorities. This Long-Range Plan describes the issues related to the content and management of NIDRR's research and other activities that will constitute the substantive portion of NIDRR's strategies to achieve its GPRA performance objectives. --------------------------------------------------------------------------- (1) To set broad general directions that will guide NIDRR's policies and use of resources as the field of disability enters the 21st century; (2) To establish objectives for research and dissemination that will improve the lives of individuals with disabilities and from which annual research priorities can be formulated; (3) To describe a system for operationalizing the Plan in terms of annual priorities, evaluation of the implementation of the Plan, and updates of the Plan as necessary; and (4) To direct new emphasis to the management and administration of the research endeavor. This Plan was developed with the guidance of a distinguished group of NIDRR constituents--individuals with disabilities and their family members and advocates, service providers, researchers, educators, administrators, and policymakers, including the Commissioner of the Rehabilitation Services Administration, members of the National Council on Disability, and representatives from DHHS. It draws upon public hearings and planning activities conducted under the prior NIDRR administration (Dr. William H. Graves, Director) and on papers prepared for the Plan by more than a dozen authors. The Plan addresses a range of diverse objectives, including: (1) The needs of individuals with disabilities for knowledge and information that will enable them to achieve their aspirations for self-direction, independence, inclusion, and functional competence; (2) The needs of rehabilitation service providers for information on new techniques and technologies that will enable them to assist in the rehabilitation of individuals with disabilities; (3) The needs of researchers to advance the capabilities of science as well as the body of scientific knowledge; (4) The needs of society, and its leadership, for strategies that will enable it to facilitate the potential contributions of all citizens; and (5) The need to transfer findings from basic to applied research. Accomplishments of the Past In creating NIDRR, Congress recognized that research has contributed substantially to improvements in the lives of individuals with disabilities and their families. Individuals with disabilities live longer, have a better quality of life, enjoy better health, and look forward to more opportunities than they did 30 years ago, and more advances occur every day. Today it is commonplace to find people in wheelchairs traveling in airplanes and private vehicles, people who are blind using computers, and people who are deaf attending the theater, while individuals who have significant disabilities are being recognized as world leaders in the arts and sciences. These developments owe much to research advances at both the individual and societal levels. Advances at the Individual Level Research, and its use to improve practice, inform policy, and raise awareness, has changed the lives and the outlook for individuals with disabilities and their families. For example, the life expectancy of individuals who paralysis from spinal cord injury has risen continuously in the past 25 years (DeVivo & Stover, 1995). The concerted efforts of U.S. researchers, most of whom received NIDRR support, have succeeded in greatly reducing the number of severe urinary tract infections and other urinary tract complications in this population, thereby reducing renal failure as a cause of death for these individuals from 1st to 12th place over the past two decades. Decubitus ulcers also have been a serious problem for persons with spinal cord injury, as well as for those with stroke, multiple sclerosis, and other immobilizing conditions. Decubitus ulcers are destructive and costly to treat, resulting in lost workdays, high medical expenses, hospitalizations, and further secondary complications. Through the efforts of medical researchers and rehabilitation engineers, preventive measures have been developed including seating, cushioning, and positioning devices; behavioral protocols; and improved treatment methods. These efforts have greatly reduced the length of time needed for medical treatment of decubiti, and the cost of this treatment. Rehabilitation engineering research has been responsible for the application of new materials in the design of wheelchairs and orthotic and prosthetic devices that render these technologies comfortable and serviceable, and allow their users to accomplish many important personal goals. For example, wheelchairs racers using the newest sports wheelchairs can complete races longer than 800 meters at speeds faster than those of Olympic runners. In the Paralympics, runners using prosthetic legs repeatedly have demonstrated impressive speeds. In everyday life, people who use wheelchairs have benefited from lightweight, transportable chairs as well as powered chairs that greatly increase the independence of some users. Advances at the Environmental-Societal Level In the last two decades, NIDRR has participated in an unprecedented expansion of opportunities and possibilities for persons with disabilities. During this period, technology has greatly enhanced the accommodation of disability, self-awareness has raised the expectation of and for persons with disabilities, and advocacy has resulted in recognition of the rights of persons with disabilities to societal access and reasonable accommodations. NIDRR has supported research that has facilitated the inclusion of persons with mental retardation and those with emotional disabilities in communities, workplaces, and lifelong learning. In [[Page 45751]] doing so, NIDRR researchers have documented patterns of deinstitutionalization; developed techniques for behavior management that have enabled individuals to leave institutions and live and work in the community; strengthened self-advocacy and peer-support programs; developed technological solutions to improve access to housing, communications, and work; and developed strategies to increase employment and to support families in their important roles. Today's research on the application of the principles of universal design to the built environment, information technology and telecommunications, transportation, and consumer products is based on the concept of an environment that is usable by persons with a very broad range of function. For example, after years of research, all television sets are not equipped with decoders that allow people with hearing loss to access most programs. In addition, ergonomic research undergirds the development of workplace designs and the standards for building codes, consumer products, and the telecommunications infrastructure. These advances have been instrumental in leading to a change in the disability paradigm, expanding the focus of disability to include environmental factors, as well as individual factors. NIDRR's research activities also have led to the development of small businesses in hearing aids, prosthetics, communication devices, and instructional software. NIDRR research provides an important stimulus in a field of orphan products with small markets. Expectations for the Future: A New Paradigm of Disability The identification of trends in the distribution of disabilities, the emergence of new disabilities, and the prevalence of disability in the nation's aging population further challenge the disability research field. Additionally, the research field must develop ways to measure and address the impact of environmental factors on the phenomenon of disability. NIDRR has provided leadership in research leading to a new conceptual foundation for organizing and interpreting the phenomenon of disability--a ``New Paradigm'' of disability. This paradigm is a construction of the disability and scientific communities alike and provides a mechanism for the application of scientific research to the goals and concerns of individuals with disabilities. The new paradigm of disability is neither entirely new nor entirely static. Thomas Kuhn defines paradigm as ``universal achievements that for a time provide model problems and solutions to a community of practioners'' (Kuhn, 1962). The term paradigm is used here in the quasi-popular sense it has acquired over the last 40 years to indicate a basic concensus among investigators of a phenomenon that defines the legitimate problems and methods of a research field. NIDRR posits that the paradigm in this case applies not to a single field, but to a single phenomenon-- ``disability''--as it is investigated by multiple disciplinary fields. The disability paradigm that undergirds NIDRR's research strategy for the future maintains that disability is a product of an interaction between characteristics (e.g., conditions or impairments, functional status, or personal and social qualities) of the individual and characteristics of the natural, built, cultural, and social environments. The construct of disability is located on a continuum from enablement to disablement. Personal characteristics, as well as environmental ones, may be enabling or disabling, and the relative degree fluctuates, depending on condition, time, and setting. Disability is a contextual variable, dynamic over time and circumstance. Environments may be physically (in)accessible, culturally (ex) (in)clusive, (un)accommodating and (un)supportive. For example, on a societal level, institutions and the built environment were designed for a limited segment of the population. Researchers should explore new ways of measuring and assessing disability in context, taking into account the effect of physical, policy, and social environments, and the dynamic nature of disability over the lifespan and across environments. Perhaps the new paradigm can be understood best in contrast to the paradigm it replaces and through a clarification of the importance the paradigm has for all aspects of research and policy (see Table 1). The ``old'' paradigm, which was reductive to medical condition, and is reflected in many aspects of the Nation's policy and service delivery arenas, has presented disability as the result of a deficit in an individual that prevented the individual from performing certain functions or activities. This underlying assumption about disability affected many aspects of research, rehabilitation, and services. The new paradigm of disability is integrative and holistic, and focuses on the whole person functioning in an environmental context. This new paradigm of disability is reflected in the ADA and sets a goals framework for research, policy, and delivery of services and supports relative to disability. The new paradigm with its recognition of the contextual aspect of disability--the dynamic interaction between individual and environment over the lifespan that constitutes disability--has significant consequences for NIDRR's research agenda over the next decade. These consequences include: Changes in the ways disability is defined and conceptualized; new approaches for measuring and counting disability; a focus on new research issues; and changes in the way research is managed and conducted. Definitional Issues One of the fundamental consequences of the new paradigm is the need for the reformulation of definitions. The definition of disability is critical to building a conceptual model that identifies relevant components of disablement and their relationships to each other, and the dynamic mechanisms by which they change. Typically, definitions of disability have varied depending on their intended use. From a research perspective, definitions used for counting and describing disabled people have been important, while definitions establishing eligibility for benefits and services have been critical from the policy perspective. The majority of Federal definitions of disability, including those in the Rehabilitation Act, the ADA, and the National Health Interview Survey (NHIS), derive from the old paradigm. These definitions all attribute the cause of limitations in daily activities or social roles to characteristics of the individual, that is, ``conditions'' or ``impairments.'' Even the ADA, which promotes accessibility and accommodations, locates the disability with the individual. This is understandable not only because of the time involved in changing a paradigm, but because of the lack of a system to define, classify, and measure the environmental components of disability and the absence of a model to describe and quantify the interaction of environmental and individual variables. This need for a change in definitions must be addressed by activities such as the attempt to revise the International Classification of Impairments, Disabilities, and Handicaps (ICIDH) (1980), to better define and measure the factors external to the individual that contribute to disability. [[Page 45752]] Table 1.--Contrast of Paradigms ------------------------------------------------------------------------ `Old' paradigm `New' paradigm ------------------------------------------------------------------------ Definition of Disability.... An individual is An individual with limited by his/her an impairment impairment or requires an condition. accommodation to perform functions required to carry out life activities. Stragegy to Address Fix the individual, Remove barriers, Disability. correct the deficit. create access through accommodation and universal design, promote wellness and health. Method to Address Disability Provision of Provision of medical, supports, e.g., vocational, or assistive psychological technology, rehabilitation personal assistance services. services, job coach. Source of Intervention...... Professionals, Peers, mainstream clinicians, and service providers, other consumer rehabilitation information service providers. services. Entitlements................ Eligibility for Eligibility for benefits based on accommodations seen severity of as a civil right. impairment. Role of Disabled Individual. Object of Consumer or intervention, customer, empowered patient, peer, research beneficiary, participant, research subject. decision-maker. Domain of Disability........ A medical A socio- ``problem''. environmental issue involving accessibility, accommodations, and equity. ------------------------------------------------------------------------ Note: Adapted from materials prepared for this Long-Range Plan by Gerben DeJong and Bonnie O'Day. Measurement Issues Sources of data, including demographic studies and national surveys, should be adjusted to reflect new definitions or concepts, and to take into account contextual variables in survey sampling techniques. Survey questions must reflect environmental factors as well as individual factors such as socioeconomic characteristics or impairments. Under the new paradigm, questions about employment status, for example, should focus on the need for accommodations as well as on the existence of an impairment. Measures must enable researchers to predict and understand changes in the prevalence and distribution of disabilities--the emerging universe of disability--which illustrates the link between underlying social and environmental conditions such as poverty, race, culture, isolation, the age continuum, and the emergence of new causes of disability, new disability syndromes, and the differential distribution of disability among various population groups in our society. Concern increasingly is focused on vulnerable populations as researchers find more evidence that disability, and risk thereof, are disproportionately concentrated in populations in poverty, populations that lack access to state-of-the-art preventions or interventions, and populations that are exposed to additional external or lifestyle risk factors. There are new impairments, exacerbated impairments, or new etiologies that are associated with socioeconomic status, education levels, access to health care, nutrition, living conditions, and personal safety. Individuals from racial, linguistic, or cultural minority backgrounds are more likely to live in poverty and to lack adequate nutrition, pre-natal and other health care, access to preventive care, and health information. These individuals also have more exposure to interpersonal violence and intentional injury. The new paradigm's recognition of environmental factors leads to a focus on underserved minority populations--part of the emerging universe of disability discussed in Chapter Two. New Focus of Research Inquiries The new paradigm adds, or increases the relative emphases on, certain areas of inquiry. Research must develop new methods to focus on the interface between person and society. It is not enough simply to shift the focus of concern from the individual to the environment. What is needed are studies of the dynamic interplay between person and environment; of the adapting process, by the society as well as by the individual; and of the adaptive changes that occur during a person's lifespan. The aging of the disabled population in conjunction with quality of life issues dictates a particular focus on prevention and alleviation of secondary disabilities and co-existing conditions and on health maintenance over the lifespan. Research must focus on the development and evaluation of environmental options in the built environment and the communications environment, including such approaches as universal design, modular design, and assistive technology that enable individuals with disabilities and society to select the most appropriate means to accommodate or alleviate limitations. Research must lead to a better understanding of the context and trends in our society that affect the total environment in which people with disabilities will live and in which disability will be manifested. These include: economy and labor market trends; social, cultural, and attitudinal developments; and new technological developments. Research must develop ways to enable individuals with disabilities to compete in the global economy, including education and training methods, job accommodations, and assistive technology. Research must develop an understanding of the public policy context in which disability is addressed, ignored, or exacerbated. General fiscal and economic policies, as well as more specific policies on employment, delivery and financing of health care, income support, transportation, social services, telecommunications, institutionalization, education, and long-term care are critical factors influencing disability and disabled persons. Their frequent inconsistencies, contradictions, and oversights can inhibit the attainment of personal and social goals for persons with disabilities. Research Management The new paradigm requires new models for the management of the research enterprise that include stakeholder participation, interdisciplinary and collaborative efforts, more large-scale and longitudinal research, and new research methodologies to conduct meaningful studies in the emerging policy environments. Training in disability and rehabilitation research must be expanded to include disciplines such as architecture and business. There will be new venues for the conduct of research, and a need for validated methodologies to conduct research on dynamic person-environment interactions and under [[Page 45753]] constricted circumstances. Through training programs, the disability and rehabilitation research field also should work to increase the number of disabled and minority researchers. The role of disabled consumers in research under the new paradigm, as well as in policy and services, is proactive and participative. Consumers have a role in shaping their environments and in managing the supports and services they require. Research must be more inclusive and participatory, involving not only consumers but also other stakeholders in understanding and interpreting research, in disseminating and applying research findings, and in planning, conducting, and evaluating research. Consumer satisfaction with research as well as services will be subject to assessment. Moreover, interdisciplinary and collaborative research are important for explicating the multidimensional qualities of disability. It is only through research coordination and collaboration that the findings of basic research can be translated into the knowledge base of disability research. Regardless of its auspices, research is a cumulative and integrative process; new knowledge comes from many sources, often in response to concerted pursuit, but also sometimes serendipitously. Research is often slow-moving and always painstaking; one of the ironies of the research effort is that a disproved hypothesis may constitute a successful project, particularly if it diverts the time and resources of others from an unfruitful direction. As one participant in the planning process put it, ``sometimes the new questions you stimulate are more important than the ones you answer in your research project.'' NIDRR is pleased to have collaborated with many other Federal and private agencies that sponsor various aspects of disability and rehabilitation research, and is committed to making research an inclusive, collaborative, and coordinated undertaking. Organization of the Plan This introductory chapter has set the framework for understanding NIDRR's mission and approach. After the next chapter, ``Dimensions of Disability,'' the Plan will discuss, in Section Two, an agenda for research that provides opportunities for leadership and innovation. NIDRR will implement this research agenda in conjunction with excellent management strategies, a dynamic program of knowledge dissemination, and a vigorous effort to build capacity of the field through training researchers and users of research. Section Three will focus on these activities. NIDRR intends this five-year research Plan to balance the competing demands of consumer relevance and scientific rigor, and to present an agenda for research that is responsive, scientifically sound, and accountable, and which makes a contribution to the refinement of the Nation's science and technology policy. Chapter 2: Dimensions of Disability ``Policy issues at the forefront of the disability agenda require accurate data, routinely repeated measures, sophisticated analysis, and broad dissemination'' (National Council on Disability, Action Steps for Changes to Federal Disability Data Collection Activities, draft report, Sept. 19, 1997). This chapter of the Plan presents NIDRR's operative definitions of disability, discusses several analytical frameworks for the categorization of disability, and highlights deficits in current definitions and data collection. The chapter then presents data about the prevalence and distribution of disability in the nation and includes selected demographic data related to the major NIDRR goals of independence, inclusion, and employment. Definitions and Concepts of Disability and Disablement The definition of an individual with a disability under which NIDRR operates is contained in the Rehabilitation Act of 1973, (Public Law 93-112) as amended, and is as follows: any person who (i) has a physical or mental impairment which substantially limits one or more of such person's major life activities, (ii) has a record of such an impairment, or (iii) is regarded as having such an impairment (29 U.S.C. 706(8)(B)). This definition is similar to those contained in the ADA and the Technology-Related Assistance for Individuals with Disabilities Act (Tech Act). The impairments that lead to limitations in activities may be related to genetic conditions or to acquired diseases or traumas that may occur throughout the lifespan. The extent of disability, and the conditions associated with disability, are significant to individuals and their families, and to the Nation. Prevailing definitions, based in statute and supporting program authorities, clearly do not reflect new paradigm concepts of disability. Nearly all definitions identify an individual as disabled based on a physical or mental impairment that limits the person's ability to perform an important activity. Note that the complementary possibility--that the individual is limited by a barrier in society or the environment--is never considered. This Plan suggests that it is useful to regard an individual with a disability as a person with an impairment who requires an accommodation or intervention rather than as a person limited solely by a condition. This new approach derives from the interaction between personal variables and environmental conditions. Because accommodations can address person-centered factors as well as socio-environmental factors, a ``need for accommodation'' is a more adaptable concept for the new paradigm. The various definitions of disability that have formed the basis for both program eligibility and survey data collection do not have explanatory power for research purposes. The field of disability research lacks a widely accepted conceptual foundation for the measurement of disability as well as consistent definitions for data collection. In recent years, however, a number of efforts to develop conceptual frameworks to organize information about disability have been initiated (see Table 2). Among these efforts are: (1) The ICIDH, which was developed in 1980 by the WHO. The ICIDH was designed to provide a framework to organize information about the consequences of disease. An ongoing revision process is considering social, behavioral, and environmental factors to refine the concept of ``handicap;'' Table 2.--Concepts in Models of Disability ------------------------------------------------------------------------ ICIDH Nagi/1991 IOM NCMRR ------------------------------------------------------------------------ Disease--Something abnormal Active pathology-- Pathophysiology--Int within the individual; Interruption or erruption or etiology gives rise to interference of interference with change in structure and normal bodily normal functioning of the body. processes or physiological and structures. developmental processes or structure. [[Page 45754]] Impairment--Any loss or Impairment--Anatomic Impairment--Loss or abnormality of al, physiological, abnormalities of psychological, mental or emotional cognitive, physiological, or abnormalities or emotional, anatomical structure or loss. physiological, or function at the organ level. anatomical structure or function, including losses or abnormalities, not those attributable to the initial pathophysiology. Disability--Any restriction Functional Functional or lack (resulting from an limitation--Restric limitation--Restric impairment) of ability to tion or lack of tion or lack of perform an activity in the ability to perform ability to perform manner or range considered an action or an action in the normal for a human being. activity in the manner or within manner or within the range the range consistent with the considered normal parts of an organ that results from or organ system. impairment. Handicap--A disadvantage Disability--Inabilit Disability--Inabilit resulting from an y or limitation in y or limitation in impairment or disability performing socially performing tasks, that limits or prevents defined activities activities, and fulfillment of a normal and roles expected roles to levels role depending on age, sex, of individuals expected within the and sociocultural factors. within a social and physical and social physical context. environment. Societal limitation-- Restrictions attributable to social policy and barriers (structural or attitudinal) which limits fulfillment of roles and denies access opportunities that are associated with full participation in society. ------------------------------------------------------------------------ Note: Information in column 1 is from International Classification of Impairments, Disabilities, and Handicaps, by the World Health Organization, 1980, Geneva, Switzerland: Author. Information in column 2 is from Disability Concepts Revisited: Implications for Prevention, by S.Z. Nagi, 1991, (p. 7) in Disability in America: Toward A National Agenda for Prevention by A.M. Pope and A.R. Tarlov (Eds.), 1991, Washington, DC: National Academy Press. Information in column 3 is from Research Plan for the National Center for Medical Rehabilitation Research, (p. 33), by the National Institute of Child Health and Human Development (1993) (NIH Publication No. 93-3509), Washington, DC: U.S. Government Printing Office. (2) The ``Nagi model'' (Nagi, 1991), which was presented by the Institute of Medicine (IOM) in its 1991 Disability in America report (Pope & Tarlov, 1991). The model was revised in the 1997 report entitled Enabling America (Brandt & Pope, 1997). The IOM (1997) also posits that disability is a function of the interaction of individuals with the social and physical environments. The revised Nagi model describes the environment as including the natural environment, the built environment, culture, the economic system, the political system, and psychological factors. The new model includes a state of ``no disabling condition.'' The state of disability is not included in this model because disability is not viewed as inherent in the person, but rather as a function of the interaction of the individual and the environment; and (3) The schematic adopted by the National Center for Medical Rehabilitation research (NCMRR) in its Research Plan (1993, p.33), which added the concept of societal limitation. Continuum of Enablement-Disablement The most widely used conceptual frameworks applied to disability and rehabilitation research have in common a continuum that progresses from some underlying etiology or disease to limitations in physical or mental function. These functional limitations, when combined with external or environmental conditions, may lead to some deficit in the performance of daily activities or expected social roles. In ``Enabling America,'' the IOM has urged the adoption of a new conceptual framework as a model for the enablement-disablement process (Brandt & Pope, 1997). This model has the advantage of identifying components of person-centered and environment-centered variables. The IOM framework identifies four categories of individual factors (person, biology, behavior, and resources) and nine categories of external environment factors (natural, culture, engineered environments, therapeutic modalities, health care delivery system, social institutions, macro- economy, policy and law, and resources and opportunities). NIDRR research focuses on crucial areas of functional loss, disability, and socio-environmental aspects of the continuum. In keeping with the new paradigm, NIDRR emphasizes the importance of explicating the connection between the person and the environment, and interface that determines the disabling consequences of impairments and conditions. This study of the dynamic interaction among various individual and environmental variables requires NIDRR's continued and increased attention to shaping the structure, management, and capacity for research. methodologies are needed, often in an interdisciplinary context, that can illuminate multiple facets of disablement and enablement from numerous perspectives. Limitations in Federal Data Sources The various Federal data collection efforts that assess the extent and distribution of disability in society are less than ideal for measuring the population that meets the NIDRR definition of an individual with a disability. These efforts generally can be categorized as either program data, which focus on the recipients of Federal benefit or service programs, or national surveys that focus on perceived limitations in activities caused by health conditions. Both program and survey data focus on the ``physical or mental impairment'' as the cause of the limitation. This is a reductionist approach that discounts social and environmental factors or assumes that these factors are subsumed within individual attributes. The National Health Interview Survey (NHIS), are the two most widely used sources of survey data to describe the population of individuals with disabilities. The data from the Disability Supplement to the NHIS currently is being analyzed by a number of researchers and will yield much-needed information on persons with disabilities. The Disability Supplement is the product of a 1994 to 1996 data collection effort that was the result of years of cooperative development by Federal agencies concerned with disability issues. While the Disability Supplement will have enormous value to its users, the Supplement, like other data sources, lacks any measures of the environmental factors (social or physical) that contribute to disablement, as well as any measures of interaction between person and environment. Federal data collection efforts, including the Census, the NHIS, the [[Page 45755]] SIPP, the Current Population Survey (CPS), and many other program- specific or topical data collections, not only fail to address important new concepts of disability, but also are limited in other respects. Sampling procedures may result in the exclusion of low- incidence disabilities and insufficient information about minority populations; self-reporting leads to underreporting many conditions; and survey formats frequently are inaccessible to persons with cognitive, sensory, or language limitations. Many Federal data collection efforts, as well as most private ones, do not routinely include information about persons with disability in their collection and reporting. Improvements in data quality and availability will be a key goal of NIDRR in this five-year Plan. Particular problems exist in defining and quantifying disability in children. Many service programs rely on diagnostic categories for eligibility, and even those that have attempted a functional approach have had difficulty assessing the effect of context, expectations, transactions with adults, chronicity and duration, in determining the extent of disability among children. The Office of Special Education Programs (OSEP)--administers the Individuals with Disabilities Education Act (IDEA), which mandates that schools have a full range of services necessary to provide a free and appropriate public education for children with disabilities. According to OSEP's 1995-1996 IDEA annual report to Congress, 5.6 million disabled children (ages 3 to 21) received educational services. Approximately, one-half of these children were identified as having specific learning disabilities, Other high incidence disabilities included speech and language impairments, mental retardation, and serious emotional disturbances. Because OSEP and other Department of Education offices focus their research on activities based in the educational system, including the development of curriculum and teaching methods and the training of teachers, NIDRR has directed its research on disabled children to aspects of life outside that arena. These issues include family-child relations; social relationships; community integration; medical technologies for replacing, or substituting for, function; accommodations; and supports to families. NIDRR research also has a role in addressing the critical problems of succeeding in the transitions from school to adult life in the community, and in the work and adult service systems. In a broader context, it is important to note that 5.5 percent of all American families contain one or more children with a disability (LaPlante, Carlson, Kaye, & Wenger, 1996). Children with disabilities are more likely to be found in low-income families and families headed by single mothers. Prevalence of Disability The importance of disability research is underscored by the frequency and widespread dispersion of disabilities in the U.S. population. The following data about disability were selected because of their relevance to NIDRR's specific priorities and to the overall objectives of this plan. The 1994 NHIS estimated that 15 percent of the noninstitutionalized civilian population--some 38 million people--were limited in activity due to chronic conditions (Adams & Marano, 1995). The Institute of Medicine interpolated the NHIS data to indicate that 38 percent of disabilities were associated with mobility limitations, followed by chronic disease (32 percent); sensory limitations (8 percent); intellectual limitations (7 percent); and all other conditions (15 percent) (Pope & Tarlov, 1991). The SIPP identified 48.9 million persons who reported themselves as limited in performing functional activities or in fulfilling a socially defined role or task. Of these, 24.1 million persons were identified as having a ``severe disability'' (Kraus, Stoddard, & Gilmartin, 1996). Both surveys excluded persons in nursing homes or institutions, who would be expected to have a high rate of disability. Including that population through extrapolation has led to the commonly cited figures of 43 to 48 million Americans with disabilities. Both the NHIS and SIPP focus on limitations in major life activities, due to a physical or mental condition, but also provide data on persons who are limited in or unable to perform activities of daily living (ADLs)--such as eating, bathing, dressing, toileting, or transferring--without assistance or devices, or to perform instrumental activities of daily living (IADLs)--such as basic home care, shopping, meal preparation, telephoning, and managing money. Approximately eight million people reported difficulty with ADLs, and approximately four million with one or more ADLs needed the assistance of another person (McNeil, 1993). The range of these estimates--from approximately 4 million people who need help simply to sustain their lives to the 40 million who report any kind of activity limitation--illustrates the danger in discussing the disabled population or its needs as a homogeneous group. More refined data are needed to assess the needs for medical and health care, vocational rehabilitation and employment assistance, supports for living in the community, and assistive technology. Demographics of Disability: Age, Gender, Race, Education, Income, and Geography Disability is distributed differently in the population according to characteristics of age, gender, race, and ethnicity, and both region and size of locality in which a person resides. Educational level is inversely correlated with the prevalence of disability. Poverty is a key factor both as a contributing cause and a result of disability. Table 3 presents NHIS data on sociodemographic correlates of activity limitations. This table indicates that disability is very likely linked to other social factors and reinforces the need to address disability in a broad context. Emerging Universe of Disability NIDRR has begun to focus on an ``emerging universe'' of disability, in which either the conditions associated with disability, their distribution in the population, or their causes and consequences, are substantially different from those in the traditional disability population. This emerging universe is identified with new disabling conditions; new causes for impairments; differential distributions within the population; increased frequency of some impairments, including those associated with the aging of the population; and different consequences of disability, particularly as related to social-environmental factors, lifespan issues, and projected demands for services and supports. Researchers have identified a ``new morbidity'' (Baumeister, Kupstas, & Woodley-Zanthos, 1993) in which the cluster of factors associated with poverty--such as poor education, poor medical care, low birthweight babies, lack of prenatal care, substance abuse, interpersonal violence, isolation, occupational risks, and exposure to environmental hazards--have a high correlation with the existence of impairments, disabilities, and exacerbated consequences of disabilities. For example, the leading cause of mental retardation is no longer RH-factor incompatibility, but may be related to any factor associated with high-risk births, which are more common among low- income mothers. [[Page 45756]] Interpersonal violence accounts for the rising incidence of certain conditions, especially spinal cord injury and traumatic brain injury, among inner-city minority populations. These developments have enormous implications for research problems to be addressed and future demands for various types of services. Table 3.--Degree of Activity Limitation Due to Chronic Conditions, by Demographic Characteristics: 1994 ---------------------------------------------------------------------------------------------------------------- Limited in Unable to amount or kind Limited, but Characteristic All persons With activity carry on major of major not in major (in thousands) limitation activity activity activity (percent) (percent) (percent) ---------------------------------------------------------------------------------------------------------------- All persons.................... 259,634 15 4.6 5.7 4.7 Age: Under 18 years............. 70,025 6.7 0.7 4.2 1.8 18-44 years................ 108,178 10.3 3.2 3.9 3.1 45-64 years................ 50,405 22.6 9.2 7.9 5.5 65-69 years................ 9,685 36.7 16.7 11.9 7.3 70 years and older......... 21,340 38.9 8.1 12.6 19.3 Sex: Male....................... 126,494 14.4 4.8 5.3 4.3 Female..................... 133,139 15.7 4.4 6.1 5.2 Race: White...................... 214.496 15.1 4.4 5.8 4.9 African American........... 33,035 16.3 6.3 6.2 3.8 Family Income: Under $10,000.............. 23,363 28 11.2 9.9 6.9 $10,000-$19,999............ 37,271 21.1 7.3 7.7 6.2 $20,000-$34,999............ 54,171 14.8 4.1 6.0 4.7 $35,000 or more............ 100,302 9.4 1.9 3.9 3.6 Geographic Region: Northwest.................. 50,610 14.3 4.3 5.6 4.3 Midwest.................... 63,238 14.6 3.9 6.0 4.6 South...................... 88,088 16.1 5.3 6.0 4.8 West....................... 57,697 14.7 4.6 5.0 5.0 Place of Residence: Metropolitan statistical 203,079 14.3 4.4 5.5 4.5 area (MSA)................ Central city............... 79,510 15.8 5.4 5.9 4.5 Not central city........... 123,570 13.4 3.8 5.2 4.5 Not MSA.................... 56,554 17.6 5.4 6.6 5.6 ---------------------------------------------------------------------------------------------------------------- Note: From Tables 67-68 in Current Estimates from the National Health Interview Survey, 1994, Series 10, No. 193, by P.F. Adams and M.A. Marano, Hyattsville, MD: National Center for Health Statistics. New illnesses or conditions have emerged in recent years; some, but by no means all, are poverty-related. AIDS, Attention Deficit Hyperactivity Disorder (ADHD), violence-induced neurological damage, repetitive motion syndrome, chronic fatigue syndromes, childhood asthma, drug addiction, and environmental illnesses are all either relatively new conditions or ones of increasing prevalence and severity in society. Additionally, the aging of the population, given the higher rates of many disabilities among older persons, is another demographic factor that will influence issues to be addressed by applied research. Many emergent disabilities, including those attributed to violence, abuse, and poverty, have a higher incidence among women and are particularly likely to reflect women with already existing disabilities. As new causes of disabilities emerge, the new paradigm of disability clearly provides a progressive approach to successful addressing environmental and social barriers for people with disabilities. These new issues have implications not only for disability research and services, but also for public health and prevention activities. Disability, Employment, and Independent Living Because of NIDRR's statutory concern with improving employment outcomes for persons with disabilities, it is valuable to present a brief overview of the employment status of persons with disabilities. LaPlante & Carlson (1996) report that 19 million Americans with an impairment or health problem (ages 18-69) were unable to work or limited in the amount or type of work they could perform. According to the CPS, about 10 percent of the population between 16 and 64 had work limitations (different age ranges reflect changing concepts of ``working age'') (LaPlante, Kennedy, Kay, & Wenzer, 1996). Back disorders, heart disease, and arthritis were frequently reported as major causes of work disability (LaPlante & Carlson, 1996). However, mental illnesses is one of the most work-disabling conditions; data showed that among adults with serious mental illness (an estimated 3.3 million persons), 29 percent were reported to be unable to work and 18 percent were limited in their ability to work because of their mental disorder (Barker, Manderscheid, Hendershot, Jack, Schoenborn, & Goldstrom, 1992). While the presence of any disability reduces the likelihood of employment, the effect is closely tied to the severity of the disability. The SIPP estimates that among persons 21 to 64 years old, the employment rate was 81 percent for persons with no disability, 67 percent for persons with a disability that was not severe, and 23 percent for persons with a severe disability (McNeil, 1993). Only 21 percent of persons needing personal assistance with ADLs or IADLs were employed (U.S. Bureau of the Census, 1998). The unemployment rate for persons with disabilities, which counts only those persons in the labor force, was 12.6 percent, more than twice the unemployment rate of nondisabled Americans (Stoddard, Jans, Ripple, & Kraus, 1998). [[Page 45757]] Disabled persons who work full time typically earn less than nondisabled workers with the earnings gap widening with age and severity of disability. Persons with disabilities who do not work may qualify for income support payments under Social Security Disability Insurance (SSDI) (if they have a work history) or Supplementary Security Income (SSI). As of January 1996, 5 million persons received SSDI benefits, including 4.2 million disabled workers, 686,300 disabled adult children, and 173,800 disabled widows and widowers (Social Security Administration, 1996). A 1993 report cited mental disorders as the most frequent cause of disability (35 percent), followed by musculoskeletal, circulatory, and nervous system disorders (Social Security Administration, 1993). At the end of 1993, about 3.8 million persons under age 65 received SSI benefits due to disability and poverty (Kochhar & Scott, 1995). More than one-half of these persons had either mental retardation or mental illness. The Social Security Administration (SSA) has noted a sharp increase in the number of disabled SSI recipients, an increasing proportion with mental illness, and a growing number who enter the rolls as children and remain for long periods (Kochhar & Scott, 1995). Many of these increases in both SSDI and SSI programs can be attributed to program changes (such as different eligibility requirements and outreach), to a shifting from other income support categories, to changes in stability of employment and private health insurance, and to the bundling of health insurance coverage with income supports. Eligibility for public health insurance is generally tied to the receipt of income transfer payments from a public income support program. Data elements about residential status, family composition, and need for personal assistance services illuminate some of the characteristics of the disabled population. Of the estimated 48.9 million persons with disabilities from the SIPP data, 32.5 million own their own homes and 16.4 million rent (McNeil, 1993). An estimated 9.8 million live alone and over 27 million persons with disabilities are married. An estimated 8.3 million individuals with disabilities live in a household with their spouse and children under 18 years of age, while an estimated 1.9 million are single parents with disabilities. An estimated 20.3 million families, or 29.2 percent of all 69.6 million families in the United States have at least one member with a disability (as measured by having an activity limitation). This rate for families is much higher than the rate of individuals having a disability. Further, there appears to be a clustering of people with disabilities in families and households, with a much higher than expected likelihood of both adult partners having disabilities and a greater than average chance that children with disabilities will live with one or more parents with disabilities. Families headed by adults with disabilities are more likely to live in poverty or to be dependent on public income support programs. Conclusion This chapter of the Plan highlighted some important disability statistics that illustrate the scope of disability in the United States. Throughout the Plan, significant data also are interspersed about the use of assistive technology, access to health care, labor force participation, and community living. In addition, Chapter Seven addresses the need for future research in disability data collection. Overall, current data on disabilities provide both a picture for concern and a cause for optimism. People with disabilities tend to have lower than average educational levels, low income levels, and high unemployment rates, especially for people with severe disabilities. Moreover, the relationship between disability and poverty tends to be bi-directional, with the conditions of poverty creating a high risk for disability and disability itself leading to poverty. At the same time, it is clear that more individuals with disabilities are completing high school and college, an education is closely correlated with employment and independence. Increasingly, individuals with disabilities are living in the community, marrying, and raising families. These individuals may receive increased attention from businesses as they constitute a market for accessible housing and adaptive devices, recreation, adult education, accommodated travel, health care, and other services. Potential providers of goods and services in the marketplace-- whether purveyors of travel and recreation, assistive devices, clothing, or any other commodities--want estimates of the size and characteristics of the potential market for their products. It is becoming increasingly important to provide these market estimates and to package data to meet the needs of manufacturers and distributors. It is also true that, while the presence of a disability may present significant challenges to individuals and families, society demonstrates a growing capacity to assist persons with disabilities to meet their needs for equity and access through new discoveries in research, improved service methods, and informed policy decisions. Section Two: NIDRR Research Agenda Chapter 3: Employment Outcomes ``With the ADA, we began a transformation of the proverbial ladder of success for some Americans into a ramp of opportunity for all Americans. Yet, * * * (so many) Americans with severe disabilities are still unemployed, * * * (making it) clear we still have many steps to take before people with disabilities have full access to the American dream'' (Tony Coelho, Chairman, President's Committee on Employment of People with Disabilities) 1999. Overview Unemployment and under-employment among working-age Americans with disabilities are ongoing, and seemingly intractable, problems. Data from the Census Bureau on the labor force status of persons ages 16 to 64 in fiscal year 1996 highlight the magnitude of this problem. While four-fifths of working-age Americans are in the labor force and more than three-fourths are working full time, less than one-third of persons with disabilities are in the labor force, and fewer than one- quarter are working full time. Fully two-thirds of working-age persons with disabilities are not in the labor force; other research suggests that a substantial portion of this staggering figure can be attributed to disincentive inherent in social and health insurance policies, to discouragement, and to lack of physical access to jobs. Finally, among those in the labor force, the unemployment rate for disabled persons is more than double that of persons without disabilities (12.6 percent versus 5.7 percent). While the comparative rates of labor force participation and full- time employment are two indicators of the workforce status of individuals with disabilities, a comparison of earnings is even more striking. In Figure 1, SIPP data illustrate the discrepancies in earnings for disabled and nondisabled workers. Even when persons with disabilities are employed full-time, their earnings are substantially lower than those of persons without disability. Severity of disability is also correlated inversely with the level of earnings. Disparities in employment rates and earnings are even greater for disabled individuals from minority backgrounds and those with [[Page 45758]] the most significant disabilities (Stoddard, Jans, Ripple, & Kraus, 1998). Economy and Labor Force Issues Several emerging characteristics of the nation's labor market exacerbate the difficulties experienced by persons with disabilities in their attempts to gain employment and even in their motivation to seek employment. Downsizing, for example, has lead to a reduction in the percentage of the labor force with stable, long-term, benefits-carrying jobs; much of business and industry is moving to other configurations that fill their labor needs without requiring a long-term commitment on the part of the employer. The ``contingent'' workforce takes many forms, including on-call workers and those in temporary help agencies, workers provided by contract firms, and independent contractors paid wages or salaries directly from the company. Many of these jobs lack security and benefits, particularly health insurance, that most persons with disabilities require for participation in the labor force. BILLING CODE 4000-01-M [[Page 45759]] [GRAPHIC] [TIFF OMITTED] TN20AU99.000 BILLING CODE 4000-01-C [[Page 45760]] In addition, while many business spokespersons and educators point to the need for highly educated, highly skilled workers if the nation is to succeed in the increasingly competitive global economy, the reality is more complex. On the one hand, availability jobs requiring specialized skills combined with rapid advances in technology may improve the employment prospects of persons with disabilities as well as other workers, through such work arrangements as telecommuting, and an expanding market for self-employment or small businesses. On the other hand, the labor market appears to be moving toward increasing bifurcation, with top-tier technocracy jobs for persons with sophisticated work skills, and lower-tiered unskilled service and maintenance jobs for the less prepared. Assisting individuals with significant disabilities in moving from dependency on public benefits or family support, or from episodic, poor-paying jobs, into stable jobs that will allow them to become self- supporting, is a complex challenge. This challenge involves a number of economic sectors, and service and support systems, and must include an examination of social policies. Providing appropriate assistance requires an extensive knowledge base encompassing economic trends, education and job training strategies, job development and placement techniques, workplace supports and accommodations, and empirical knowledge of the impact of social and health insurance policies on job- seeking behaviors. State-Federal Vocational Rehabilitation Program For the past 75 years, the primary source of publicly funded employment-related services to improve the employment status of disabled persons, especially those with significant disabilities, has been the State-Federal Vocational Rehabilitation (VR) service program, currently authorized under the Rehabilitation Act of 1973, as amended, most recently in 1998. Funded at $2.2 billion in Fiscal Year 1998 in Federal funds and a 22 percent State match for a total of about $2.7 billion annually, the program is implemented primarily as a case management system at the State and local levels. The rehabilitation counselors negotiate, on behalf of and in consultation with the consumer, the purchase of a package of services, such as medical interventions, and supports (e.g., assistive technology and licensure) that will facilitate achievement of employment outcomes. As noted by OSERS Assistant Secretary Judith Heumann in recent testimony to Congress, ``As a group, persons who achieve an employment outcome as a result of vocational rehabilitation services each year show notable gains in their economic status,'' (Barriers Preventing Social Security Recipients from Returning to Work, 1997). The percentage of persons with disabilities reporting their income as their primary source of support increased from 18 percent, at the time of application to the VR program, to 82 percent at the time of exit from the program (Barriers Preventing Social Security Recipients from Returning to Work, 1997). The percentage with earned income of any kind increased from 22 percent at entry to 92 percent at exit. The percentage working at or above minimum wage rose from 15 to 80 percent. Nevertheless, Federal policymakers, consumers, advocates, and rehabilitation professionals remain concerned that persons with disabilities often are excluded from full participation in the Nation's labor force. In the past several years, for example, SSA has experienced a very large increase in the number of persons qualifying for SSI and SSDI, and the public costs of these cash benefits are substantially increased by the addition of public support for associated Medicare/Medicaid programs, Further, neither SSA nor the VR system has experienced notable success in returning beneficiaries to the labor force. The VR system, while accepting SSI/SSDI beneficiaries for services at a proportionally higher rate than nonbeneficiaries, typically has less success with this group, that is, relatively fewer SSI/SSDI beneficiaries than nonbeneficiaries achieve an employment outcome as a result of VR services. One of the major changes in the employment sector over the past three decades is the diversification of the laborforce. Workers with disabilities are among the previously underrepresented groups entering the labor market in increasing numbers with raised expectations and legal protections for equal opportunity in employment. Even within the disability community, there is great diversity in the subgroups who have obtained or desire employment. It is very important that future research and service programs demonstrate, in their design and implementation, appropriate sensitivity to and adequate representation of the range of cultural and disability subgroups. This issue should be examined not merely as a response to the current consciousness about multiculturalism but because the basic, implicit foundations of vocational rehabilitation counseling were developed for a clientele that, in terms of demographic characteristics, work-related experience, and service needs, was quite different from today's rehabilitation customers. Specifically, vocational rehabilitation techniques were originally imported from the earlier established disciplines of secondary vocational education and college counseling psychology. Recipients of services from these disciplines tended to have mainstream acculturation and tolerance for the competitive standards, verbal testing, and guidance common in academic environments. Given the cognitively compromised or socially disadvantaged status of many of today's clients, additional scrutiny of the appropriateness and adequacy of the strategies and tools for vocational rehabilitation assessment, counseling, and training is imperative. Rehabilitation counselors need new marketing strategies to reach out to prospective employers to develop job opportunities for this diverse population of persons with disabilities. Community-Based Employment Services NIDRR's research agenda concerning employment addresses, but is not limited to, the State-Federal VR program administered by NIDRR's sister agency, the Rehabilitation Services Administration (RSA). While the VR program plays an important role, there is wide range of other Federal, State, and local funding sources for, and providers of, employment programs. These include approximately 7,000 community-based rehabilitation programs (CRPs), which serve about 800,000 persons daily, and are funded by VR and/or such diverse sources as the Job Training Partnership Act (JTPA), Worker's Compensation, or private insurance. Legislation such as the Workforce Investment Act and the Workforce Consolidation Act further diversifies the sources of support. The role of community rehabilitation programs in the overall service delivery system may be enhanced even further if Federal employment programs devolve to States and communities and if the intent to increase consumer choice in the selection of service providers becomes more widely implemented. To respond to these developments, community rehabilitation programs must be prepared to offer a full range of vocational services to an increasingly heterogenerous consumer population. Moreover, as return-to-work programs that base provider payments on [[Page 45761]] successful consumer outcomes are implemented, new relationships between service providers and funding sources may emerge over the next few years. These new relationships will require that community rehabilitation programs adapt their current structure and operations in significant ways. A number of questions about how these changes may potentially influence and impact the service delivery of community rehabilitation programs are yet unanswered. For instance, the efficacy of different models designed to maximize competitive employment outcomes for persons with significant disabilities or with specific types of disabilities is unknown. In addition, the impact of consumer choice on service delivery models is unknown. Finally, whether new funding mechanisms will promote increased competition and innovation in service delivery by community rehabilitation programs is a major question. Gaining knowledge in these important areas will allow validation of the assumptions upon which pending reforms are predicated, and the shaping of the future direction of initiatives to increase the numbers of persons with significant disabilities who obtain and retain meaningful employment. Employer Roles and Workplace Supports Employers play a key role in deciding employment outcomes for disabled persons through establishment of policies for recruitment, screening, hiring, training, promoting, accommodating, and retaining disabled individuals in the workforce. The provisions of Title I of the ADA prohibit discrimination against qualified job applicants with disabilities. Applicants are considered qualified if they can perform the essential functions of a job with or without reasonable accommodations. This statute creates duties for employers by requiring them to make the employment process accessible, provide reasonable accommodations, and focus on essential functions of jobs. These employer responsibilities cover all aspects of the pre-employment and post-employment phases. Through the requirements of Workers' Compensation laws, bargaining unit agreements, and insurance provisions, employers have additional obligations to employees who become disabled. Strategies to assist employers in meeting workplace obligations include disability management and workplace supports. Disability management is a term used to describe an array of support mechanisms and benefits that employers use to maintain employment for disabled workers. Workplace supports are programs or interventions provided in the workplace to enable persons with disabilities to be successful in securing and maintaining employment. Technology can play a major role in making workplaces accessible and in enabling individuals with disabilities to complete work tasks by adapting tools and processes. Ergonomics, universal design, and assistive technology devices are all strategies to enhance workplace performance. Typical supports include accommodations such as job restructuring, worksite adaptations, and improved accessibility. Supported employment is a specific approach to improve employment outcomes for some persons with disabilities, usually involving a job coach employed by a rehabilitation service provider to provide on-the-job assistance. Transition From School to Work NIDRR, along with RSA, OSEP, and the Department of Education as a whole, has a particular interest in the process by which disabled students transition into a world of productive work, as opposed to settling into a lifetime of dependency. This is a critical concern because the transition period presents a distinct opportunity to help students embark on a career, thus enhancing their community integration, independence, and quality of life. The transition into work occurs at many points: prevocational experiences, on-the-job training, secondary vocational education or other secondary education programs, and postsecondary education at technical institutions, community colleges, or universities. These various transition points present opportunities for research on strategies for success in transferring from a learning environment to a work environment. Research is ongoing regarding issues of postsecondary education for persons with disabilities. This research shows that youth with disabilities face tremendous difficulties in accessing postsecondary education and making the transition from school to work. Most of the Nation's institutions of higher education offer support services to students with disabilities; however, this is less certain for other types of postsecondary schools. When offered, services vary widely and may include customized academic accommodation, adaptive equipment, case management and coordination, advocacy, and counseling. A number of issues have been raised in relation to delivery of these services. Among these are issues of disclosure, accessibility of a range of services, and extent and type of transition services needed to move from school to work. Directions of Future Employment-Related Research Given the magnitude of changes in the nature and structure of the world of work and possible changes in the characteristics of the disabled population, NIDRR's employment-related research agenda for the next five years must extend beyond prior research efforts to discover mechanisms that will make the labor market more amenable to full employment for persons with disabilities. That research agenda must incorporate economic research, service delivery research, and policy research, and most importantly, must relate to the context in which employment outcomes are determined. Among the key policy issues that will affect the evolution of this agenda are SSA reform; restructured funding and payment mechanisms, including the use of vouchers; the impact of workforce consolidation; radical restructuring of employment training services at State and local levels; employment-related needs of unserved and underserved groups; linkage of health insurance benefits to either jobs or benefit programs; and transition from school to work among youth with disabilities. An important focus for research will be changes in the environment (e.g., in the workplace, information technology, and telecommunications and transportation systems) that will make work more accessible, along with strategies for assisting individuals to achieve both the skill levels and the flexibility required for full labor force participation in the 21st century. Finally, as a departure from NIDRR's historical emphasis on the service system and the quality of services, the agenda calls for examination of economic issues (including benefits and costs of various incentive plans) associated with employment of persons with disabilities, labor force projections and analyses, and an increased understanding of employer roles, perspectives, and motivational systems. The purpose of NIDRR's research in the area of employment is to: (1) Assess the impact of economic policy and labor market trends on the employment outcomes of persons with disabilities; (2) Improve the effectiveness of community-based employment service programs; (3) Improve the effectiveness of State employment service systems; (4) Evaluate the contribution of employer practices and workplace [[Page 45762]] supports to the employment outcomes of persons with disabilities; and (5) Improve school-to-work transition outcomes. Research Priorities for Employment Economic Policy and Labor Market Trends As noted earlier in this chapter, NIDRR recognizes that the impact of macroeconomics trends on employment of persons with disabilities, and public policy responses to these trends is a large and complex topic, one that will require increased policy research attention in the next 5 to 10 years. A coordinated research effort must examine such labor market demand issues as the changing structure of the workforce, skill requirements, and recruitment channels, in addition to issues on the supply side such as job preparation and skills, competencies, demographics, and incentives and disincentives to work. Specific research priorities include: (1) Analysis of the implications for employment outcomes of cross- agency and multiagency developments and initiatives, including welfare reform, workforce consolidation, SSA reform, Medicare/Medicaid changes, The Department of Education-Department of Labor school-to-work program, and Executive Order No. 13078 (1998); (2) Analysis of the dissonance between the ADA concept of ``essential elements'' of a job and the new employer emphasis on core competencies, flexibility, and work teams and the impact on job acquisition and retention; and (3) Analysis of the impact of labor market changes on employment of persons with disabilities, including alternative employment arrangements such as small business entrepreneurship, self-employment, telecommuting, part-time work, and contractual work. Community-Based Employment Service Programs Proposed restructuring of the financing of employment-related services for individuals with disabilities posits a major role for new or different service delivery arrangements. The capacity of the existing provider system, represented in part by the 7,000 community- based rehabilitation programs (CRPs) in the nation, to assume this role requires thorough investigation. Specific research priorities include: (1) Evaluation of provisions for accountability and control and protections for difficult-to-serve individuals; analysis of the cost and benefit of services, and measurement of the quality of employment outcomes for consumers with disabilities; (2) Analysis of the extent to which services that CRPs deliver to VR consumers (about one-third of services received by VR consumers come from CRPs) differ in quality, quantity, costs, or outcomes from those provided to consumers of other financing systems (e.g., Workers' Compensation or private insurance); and (3) Evaluation of the potential of this community-based employment system to assume greater responsibility for service delivery under block grants, in consolidation into umbrella agencies, and in ``one- stop shop'' service configurations. State Service Systems Amendments to the Rehabilitation Act in 1992 and 1998 called for a number of management and service delivery changes in the State-Federal VR program. These include expanded consumer choice regarding vocational goals, services, and service providers; implementation of performance standards and indicators to ensure accountability and improvement in the system; a greater role for consumer direction through the vehicle of State Rehabilitation Advisory Councils; and changes in the eligibility determination process that include presumptive eligibility and order of selection procedures, among others. Order of selection requires that individuals with the most significant disabilities receive priority for services, significantly altering the characteristics of VR clientele. Specific research priorities include: (1) Analysis of the impact of management and service delivery changes in the State-Federal VR program on the quality and outcomes of VR services; (2) Evaluation of the impact of professionalization of the rehabilitation counselor workforce; (3) Assessment of the efficacy of various methods of case management; (4) Development and evaluation of outcome measures for VR consumers under one-stop configurations; (5) Identification and evaluation of marketing strategies to assist VR counselors in helping persons with disabilities obtain jobs in a variety of employer settings; (6) Assessment of interagency coordination in delivery of services to multiagency consumers; (7) Assessment of the outcomes of small business entrepreneurship and self-employment as strategies to improve outcomes for vocational rehabilitation clients; and (8) Assessment of the applicability of traditional VR approaches for minority and new universe populations. Employer and Workplace Issues One area that has received insufficient attention in past research is the workplace, including both the physical environment (as represented by job site accommodations, technological aids, and the like) and the ``social environment'' comprising roles of co-workers, supervisors, and employers. Specific research priorities include: (1) Investigation of employer hiring and promotion practices; (2) Evaluation of models of collaboration between rehabilitation professionals and employers; (3) Development and evaluation of cost-effective strategies for improving the receptivity of the workplace environment to workers with disabilities; (4) Development and evaluation of strategies for encouraging employers to hire disabled workers (e.g., tax credits, arrangements regarding partial support for medical benefits); (5) Evaluation of the impact of new structures of work, including telecommuting, flexible hours, and self-employment on employment outcomes; (6) Identification and evaluation of disability management practices by which employers can assist workers who acquire, or aggravate disabilities to remain employed, transfer employment, or remain in the workforce and out of public benefit programs; and (7) Analysis of the role and potential of the ADA in increasing job opportunities. School-to-Work Transition Moving into employment from educational institutionals is one of the most important transitions that people make during their lifetimes. The academic levels at which transitions to the labor market occur include secondary school, secondary school completion, and completion of some level of post-secondary education. In recent years, the U.S. Departments of Education and Labor have collaborated to support the development of state and local systems whose broad mission is to prepare youth for success in the global marketplace. Specific research priorities include: (1) Determination of the impact of these state and local educational system initiatives on work opportunities for the Nation's youth with disabilities; (2) Evaluation of the extent to which school reform initiatives, such as [[Page 45763]] academic-vocational integration, Tech Prep, career academies, work- based learning, and rigorous preparation in terms of critical thinking and communication skills, and accessible to and effective with youth who have disabilities; (3) Identification of systemic and environmental barriers to full labor force participation; (4) Assessment of whether innovations in school-to-work practices are accessible to youth with disabilities, and determination of the impact of these practices on employment outcomes; and (5) Assessment of the efficacy of employment and transition services for youth from diverse backgrounds and new disability groups. Future employment research will provide information to develop new VR approaches for helping disabled individuals become competitive in the changing, global labor market. These new methods will focus on provision of culturally relevant services for clients, and the application of accommodation in the workplace. Chapter 4: Health and Function ``To be healthy does not mean to be free of disease; it means that you can function, do what you want to do, and become what you want to become'' (Rene Jules Dubos, 1901-1982). Overview Maximizing health and function is critical to maintaining independence for persons with disabilities. Health care for persons with disabilities encompasses access to care for routine health problems, participation in health promotion and wellness activities, and access to appropriate specialty care, including medical rehabilitation. Medical rehabilitation is the systematic application of modalities, therapies, and techniques to restore, improve, or replace impaired human functioning. It also encompasses biomedical engineering, that is, the use of engineering principles and techniques and biological knowledge to advance the functional ability of persons with disabilities. Health care and medical rehabilitation services operate largely within the constraints imposed by market forces and government regulations. In recent years, significant changes have occurred in health care delivery and reimbursement. Various forms of managed care have become the predominant mode of organizing and delivering health care in much of the private sector. Medicaid and Medicare also have adopted managed care strategies for providing health care to many recipients. In theory, managed care uses case coordination to contain costs by limiting access to ``unnecessary'' health care, particularly specialty services and hospitalization. Individuals with disabilities have expressed concern that managed care approaches may limit their access to medical rehabilitation specialists, goods, and services. In addition to a market-driven shift to managed care, other related changes have occurred, including shortened periods of stay in inpatient rehabilitation facilities and the emergence of subacute rehabilitation providers. Considerable consolidation also has occurred within the medical rehabilitation industry and has further affected the availability and delivery of services. There also has been a new emphasis on developing performance measures that incorporate concepts of quality, functional outcomes, and consumer satisfaction. These measures are being used to guide purchasing and accrediting decisions within the health care system. During the next five years, NIDRR plans to fund research in a number of broad areas that link health status and functional outcomes to health care and medical rehabilitation. In addition, NIDRR will support research to continue development of new treatments and delivery mechanisms to meet the rehabilitation, functional restoration, and health maintenance needs of individuals with disabilities. This research will occur at the individual and the delivery system levels. In this section, the discussion of general health care and medical rehabilitation will address issues at both levels. Health Care The goal of health care for individuals with disabilities is attaining and maintaining health and decreasing rates of occurrence of secondary conditions of disability. Individuals with disabilities use more health care services, accumulate more hospital days, and incur higher per capita medical expenditures than do nondisabled persons. Persons with no activity limitations reported approximately four physician contacts per year; this figure was doubled for those who had some activity limitation, was five times as high for those unable to perform major life activities, and was seven times as great for those needing help with instrumental activities of daily living (IADLs) (LaPlante, 1993). Understanding the relationship between disability and health has implications for the public health agenda and the application of primary disease prevention strategies to the health of persons with disabilities. In the past, the health needs of persons with disabilities often have been conflated with medical rehabilitation needs. The recognition that persons with disabilities require routine health care or access to health maintenance and wellness services is relatively new. How best to meet these needs requires substantial new research. At the individual level, persons with disabilities need providers and interventions that focus on their overall health, taking disability and environmental factors into consideration. Concern about the health of the whole person is the focus at this level, in recognition that an individual is more than a disability and deserves access to the health services generally available to the nondisabled population. At the system level, study of the organization and financing of health services must include analysis of impacts on persons with disabilities. Ameliorating the primary condition, preventing secondary conditions and co-morbidities, maximizing independence and community integration, and examining the impact of physical barriers and societal attitudes on access to health and medical rehabilitation services are critical issues at each level of focus. Health Care at the Individual Level Although persons with disabilities have higher health care utilization rates than the general population, having a disability does not mean that a person is ill. People with disabilities increasingly are demanding information about and access to programs and services aimed at promoting their overall health, including access to routine health care, preventive care, and wellness activities. This includes primary care and, for women, access to gynecological care. For children, this means access to appropriate pediatric care. In clinical settings, these demands require development of disability-sensitive protocols for proper nutrition, exercise, health screening, and treatment of nondisability-related illnesses and conditions. NIDRR is committed to supporting research to improve the overall health of persons with disabilities. Health Care at the Systems Level Persons with disabilities must have access to, and satisfaction with, an integrated continuum of health care services, including primary care and health maintenance services, specialty care, medical rehabilitation, long-term care, and health promotion programs. [[Page 45764]] Models for organizing, delivering, and financing these services must accommodate an overall health care system that is undergoing tremendous change. Issues of gatekeeper roles, carve-outs, risk-adjusted rate- setting, and service mix are factors for assessment in a context of managed care approaches that balance care coordination with cost control strategies. At issue for all people is whether cost control strategies result in barriers to needed care; and, for persons with disabilities, whether access to specialty care, particularly medical rehabilitation services, is limited. In the current cost-cutting and restrictive climate, it is important to assure that new service configurations preserve equity for persons with disabilities by providing for their unique needs. Medical Rehabilitation Medical rehabilitation addresses both the primary disability and secondary conditions evolving from the initial impairment or disability. Medical rehabilitation also teaches the individual to overcome the barriers in the environment. Medical rehabilitation includes medical and bioengineering interventions, therapeutic modalities, and community and family interventions. Medical rehabilitation frequently is associated with physical disabilities such a musculoskeletal or neuromuscular impairments or limitations in mobility or manipulation. However, medical rehabilitation provides interventions to improve or manage sensory, cognitive, or mental health functioning, pain, or fatigue, and includes rehabilitation dentistry and maxillofacial prosthodontics. Specialist and allied health personnel from a broad range of disciplines may be involved in the provision of medical rehabilitation services. Medical Rehabilitation at the Individual Level NIDRR-funded research has improved medical rehabilitation treatment in areas such as spinal cord injury, traumatic brain injury, stroke, and other leading causes of disability. This research must be expanded to include emerging disabilities. Of special concern are new causes of disability such as violence, which has emerged in recent years as a significant precipitator for new disability conditions. In addition, future medical rehabilitation research must be sensitive to cultural difference and must recognize the impact of an individual's environment on functional outcomes. Another important research focus will be examining how technological improvements enhance the ability of biomedical engineering to help people with disabilities regain, maintain, or replace functional ability. Additionally, an urgent need exists for the development of more effective outcomes measurement tools to test the usefulness of new medical rehabilitation interventions and products. These measurement tools must assess the individual's response to medical rehabilitation interventions and account for technology that enhances mobility, independence, and quality of life. Outcomes must be measured not just for the duration of treatment but also over the long term. A major medical rehabilitation issue is the prevention and treatment of secondary conditions. Secondary conditions result directly from the primary disabling conditions and may have significant effects on the health and function of persons with disabilities. Examples of secondary conditions may include depression, bladder and skin problems, respiratory problems, chronic pain, contractures or spasticity, fatigue, join deterioration, or memory loss. Other health conditions such as cardiac problems, autoimmune diseases, obesity, or cancer may not always derive directly from the original disability, but may require special preventive efforts or care interventions because of a preexisting disability. Medical Rehabilitation at the Systems Level Cost containment strategies inherent in managed care may constrain access to medical rehabilitation. Thus, it is more important than ever to demonstrate the cost effectiveness of treatments. Research on medical rehabilitation outcomes is critical to establishing the need for, and assuring access to, medical rehabilitation within the health care delivery system. Previously, NIDRR has initiated research activities to develop methods for measuring function and assessing rehabilitation outcomes, and for measuring the cost and effectiveness of various rehabilitation modalities and delivery mechanisms. These areas will continue to be important foci to NIDRR's future medical research program. Research must continue to assess the impact of changes at the system level on the rehabilitation outcomes of individuals. In addition, providing care in nonacute settings requires development of additional capacity that includes training practitioners for more independent work in community. NIDRR research must contribute to building this new capacity. The purpose of NIDRR's research in the area of health care and medical rehabilitation is to: (1) Identify and evaluate effective models of health care for persons with disabilities; (2) Develop models to promote health and wellness for persons with disabilities; (3) Examine the impact of changes in the health care delivery system on access to care; (4) Evaluate medical rehabilitation interventions that maximize physical, cognitive, sensory, and emotional function for individuals with disabilities, taking into account aging, environment, emerging disabilities, and changes in the health services delivery system; (5) Identify an evaluate medical rehabilitation interventions that will help disabled individuals maintain health, through prevention and amelioration of secondary conditions and co-morbidities, and through education; (6) Improve delivery of medical rehabilitation services to persons with disabilities; and (7) Evaluate the health and medical rehabilitation needs of persons whose impairments are attributed to newly recognized causes or whose conditions are becoming recognized as disabilities, for example, disability resulting from interpersonal violence or ``emergent'' chronic diseases such as childhood asthma or chronic fatigue immune deficiency syndrome. Future Research Priorities for Health Care and Medical Rehabilitation Research on Effective Methods of Providing a Continuum of Care, Including Primary Care and Long-Term Care, to Persons With Disabilities In recent years, a number of different models of providing routine health care for persons with disabilities have emerged. For example, there are medical rehabilitation programs that have developed primary care clinics; and there are other programs where primary care providers have added medical rehabilitation consultants to advise them on care of persons with disabilities. The efficacy of these models is not yet known, especially their impact on the overall well-being of their consumers. There has been some research on long-term care models, especially those that provide community-based services, including personal assistance; however, research questions remain regarding optimal models of long-term care. Specific priorities include: [[Page 45765]] (1) Identification of effective models of primary and long-term care across disability populations including emerging disability groups; (2) Evaluation of the impact of primary and long-term care service delivery models on independence, community integration, and overall health outcomes, including occurrence of secondary conditions and co- morbidities; and (3) Collection and analysis of longitudinal data on health care utilization by persons with disabilities, to identify trends, outcomes, and consumer satisfaction. Research on Application of Wellness and Health Promotion Strategies NIDRR will support research to develop wellness and health promotion strategies, incorporating all disability types and all age groups. Specific research priorities include: (1) Identification and evaluation of models to promote health and wellness for persons with disabilities in mainstream settings where possible. These will include nutrition, exercise, disease prevention, and other health promotion strategies. A particular focus will be placed on prevention and treatment of secondary conditions and on the needs of emerging disability populations, including persons aging with a disability; (2) Evaluation of the impact of health status on independence, community integration, quality of life, and health care expenditures; and (3) Development of guidelines that establish protocols for reaching or maintaining appropriate levels of fitness for persons with varying functional abilities. Research on the Impact of the Evolving Health Service Delivery System on Access to Health and Medical Rehabilitation Services NIDRR anticipates that the health service delivery system will continue to evolve as the marketplace responds to rising costs and as policymakers respond to public concerns about access to care. Specific research priorities include: (1) Evaluation of the impact of changes at the health system level, for example, financing and regulatory changes, on access to the continuum of health care services, including medical rehabilitation; and (2) Evaluation of the impact of triage and case management strategies on health status and rehabilitation outcomes. Research on Trauma Rehabilitation Research to improve the restoration and successful community living of individuals with burns and neurotrauma such as spinal cord injury, brain injury, and stroke, has long been an important component of NIDRR's program. Specific research priorities include: (1) Identification of methods to minimize neurological damage, improve behavioral outcomes, and enhance cognitive abilities; and (2) Identification of effective collaborative research opportunities, including those using data generated by the model systems. Research on Progressive and Degenerative Disease Rehabilitation Research to maintain and restore function and independent lifestyles for individuals with multiple sclerosis, arthritis, and neuromuscular diseases is a key element of medical rehabilitation research. Specific research priorities include: (1) Identification and evaluation of methods to maintain function for persons with these conditions; (2) Identification of effective health promotion strategies; (3) Evaluation of strategies to minimize the impact of secondary conditions; and (4) Development and evaluation of health care and rehabilitation medicine supports to facilitate community integration and independent living outcomes. Research on Birth Anomalies and Sequelae of Diseases and Injuries Medical and technological interventions to maintain and restore function in persons with cerebral palsy, spina bifida, post-polio syndrome, and other long-standing conditions are an important part of rehabilitation. Specific research priorities include: (1) Development and evaluation of physical therapy techniques, respiratory management techniques, exercise regimens, and other rehabilitative interventions aimed at maximizing functional independence (2) Development and evaluation of supports to facilitate community integration and independent living outcomes, and; (3) Investigation of factors that lead to disability and loss of full participation in society following disease or injury. Research on Secondary Conditions Prevention and treatment of secondary conditions are critical to preserving health and containing health care costs of persons with disabilities. Specific research priorities include: (1) Development of clinical guidelines to identify at-risk individuals and to involve consumers in regimens to prevent secondary conditions; (2) Identification and evaluation of methods of preventing and treating secondary conditions across impairment categories; and (3) Investigation of the interaction among secondary conditions, impairments, and aging. Research on Emergent Disabilities Explorations of the impact of disabilities resulting from new causes or expanding disability definitions will be of increasing significance to rehabilitation medicine. Emergent conditions may include such things as environmental illnesses, repetitive motion syndromes, autoimmune deficiencies, and psychosocial and behavioral conditions related to poverty and violence. Specific research priorities include: (1) Identification and evaluation of the need for health and medical rehabilitation services to address emerging disability conditions; (2) Identification and evaluation of effective models by which health and medical rehabilitation providers can meet the needs of persons with emerging disabilities; and` (3) Development of models to predict future emerging disability populations. Research on aging with a Disability Advances in acute medical care for persons with disabilities means that, as the population ages, many disabled persons will live longer and may develop the serious, chronic conditions common to many aging populations. Examples of these chronic conditions include heart disease, diabetes, cancer, pulmonary diseases, arthritis, and sensory losses. Specific research priorities include: (1) Determination of the implications of aging with a disability on access to routine health care, medical rehabilitation services, and services that support community integration; (2) Investigation of the impact of aging on disabilities and the impact of various disabilities on the aging process; (3) Investigation of the relationship between age related disability and employment; and (4) Analysis of the effect of longer lifespan on the durability and effectiveness of previously demonstrated interventions and technologies. [[Page 45766]] Research on Rehabilitation Outcomes NIDRR's prior research efforts have developed new rehabilitation techniques for a number of disability groupings and also have developed and tested comprehensive model systems, home and community-based services, and peer services to improve rehabilitation outcomes. With the renewed emphasis on performance and outcomes and with increasing economic constraints generated by changes in the health services delivery system, rehabilitation medicine needs to document the impact of its services. Specific research priorities include: (1) Expansion of outcomes evaluation approaches, beyond short-term rehabilitation studies, to include outpatient and long-term follow-up information; (2) Development of outcomes measures that include measures of environmental barriers; (3) Evaluation of methods that translate outcomes findings into quality improvement strategies; (4) Analysis of barriers and incentives to consistent use of health and medical rehabilitation outcomes measures in payer and consumer choice models; and (5) Refinement of measures of rehabilitation effectiveness. Research on Changes in the Medical Rehabilitation Industry The medical rehabilitation industry is undergoing an unprecedented level of consolidation, with unknown consequences for access and flexibility. The industry has undergone significant changes in service sites with the move from inpatient to post-acute, outpatient, and community-based services. Outcomes measurement and quality assurance initiatives are increasingly used in evaluating medical rehabilitation services. Specific research priorities include: (1) Investigation of the impact of financing and other market forces on the medical rehabilitation industry, including service delivery patterns and treatment modalities; and (2) Identification and evaluation of the impact of changes at the medical rehabilitation industry level on access and outcomes for persons with disabilities. A major research challenge will be to integrate research on the efficacy of interventions to improve outcomes with research on the impact of changes in the health care delivery system. A second overarching objective will be to relate medical rehabilitation and health care research to other changes, including the new paradigm of disability, the emerging universe of disability, and participatory research by persons with disabilities. Chapter 5: Technology for Access and Function ``For Americans without disabilities, technology makes things easier. For Americans with disabilities, technology makes things possible'' (Mary Pat Radabaugh, 1988). Overview Technology has been defined as the system by which a society provides its members with developments from science that have practical use in everyday life. Today, technology plays a vital role in the lives of millions of disabled and older Americans. Each day, people with significant disabilities use the products of two generations of research in rehabilitation and biomedical engineering to achieve and maintain maximum physical function, to live in their own homes, to study and learn, to attain gainful employment, and to participate in and contribute to society in meaningful and resourceful ways. It is more than coincidence that these remarkable advances have occurred during the period in which Federal funds have supported research, development, and training in rehabilitation engineering. In planning the future of rehabilitation engineering research, NIDRR and its constituents in the consumer, service, research, and business communities will continue to identify flexible strategies to address emerging issues and technologies, to promote widespread use of research findings, and to maximize the impact of NIDRR programs on the lives of persons with disabilities. NIDRR is particularly well positioned to continue its leadership in rehabilitation engineering research, since NIDRR locates rehabilitation engineering research on a continuum that includes related medical, clinical, and public policy research; vocational rehabilitation and independent living research; research training programs; service delivery infrastructure projects; and extensive consumer participation. The Institute supports engineering research on technology for individuals and on systems technology. For example, NIDRR has supported hearing aid and wheelchair research on the individual level, and telecommunications, transportation, and built environment research at the systems or public technology level. NIDRR also supports research on ergonomics and other interface problems related to the compatibility of various technologies, such as hearing aids and cellular telephones. Technological innovations benefit the individual at the individual level and at the systems level. At the individual level, assistive technology enhances functions and at the systems, or public technology level, technology provides access that enhances community integration and equal opportunity. Much of the assistive technology for disabled individuals falls into the category of ``orphan'' technology because of limited markets; frequently this technology is developed, produced, and distributed by small businesses. Often, technology on the systems level involves large markets and large businesses. Access to technology can be increased by incorporating principles of universal design into the built environment, information technology and telecommunications, consumer products, and transportation. Assistive Technology for Individuals In 1990, more than 13.1 million Americans, about 5 percent of the population, were using assistive technology devices to accommodate physical impairments, and 7.1 million persons, nearly 3 percent of the population, were living in homes specially adapted to accommodate impairments. While the majority of persons who use assistive technology are elderly, children and young adults use a significant proportion of the devices, such as foot braces, artificial arms or hands, adapted typewriters or computers, and leg braces (LaPlante, Hendershot, & Moss, 1992) Assistive technology includes devices that are technologically complex, involving sophisticated materials and requiring precise operations--often referred to as ``high tech''--and those that are simple, inexpensive, and made from easily available materials--commonly referred to as ``low tech.'' Scientific research in both high tech and low tech areas will serve the consumer need for practical items that are readily available and easily used. Low-tech devices, for example, are widely used by older persons with disabilities to compensate for age-related functional losses. The importance of the development of both types of assistive technologies is found in the words of one engineer who stated, ``it is not high tech or low tech that is the issue; it is the right tech.'' NIDRR research must be able to identify the most appropriate technological approach for a given application, and continue to develop low tech as well as high tech solutions. Given the current trend toward more restrictive utilization of health care [[Page 45767]] funds in both public and private sectors, rehabilitation engineering research must justify consumer or third party costs in relation to the benefits generated for consumers. These benefits may be in the form of long-term cost savings and consumer satisfaction. Equally important, rehabilitation engineers must develop products that are, in addition to being safe and durable, marketable and affordable. End-product affordability is important not only in meeting consumer needs but also in creating the market demand that will encourage manufacturers to enter production. Systems Technology: Universal Design and Accessibility As disabled persons enter the mainstream of society, the range of engineering research has broadened to encompass medical technology, technology for increased function, technology that interfaces between the individual and mainstream technology, and finally, public and systems technology. Key concepts of universal design are interchangeability, compatibility of components, modularity, simplification, and accommodations of a broad range of human performance capabilities. Universal design principles can be applied to the built environment, information technology and telecommunications, transportation, and consumer products. These technological systems are basic to community integration, education, employment, health, and economic development. The application of universal design principles during the research and development stage would incorporate the widest range of human performance into technological systems. Universal design applications may result in the avoidance of costly retrofitting of systems in use and possible reduction in need for orphan products. Technology Transfer The Institute's emphasis on applied research challenges NIDRR and its researchers to find effective ways of ensuring technology transfer--transfer of ideas, designs, prototypes, or products, from the basic to the applied research environment, to the market, and to other research endeavors. Market size, the potential for manufacturability, intellectual property rights, patents, and regulatory approval are considerations in the conceptualization and design phase of research efforts. NIDRR-funded Rehabilitation Engineering Research Centers (RERCs) consider potential industry partners in selecting research projects that will result in marketable products. Issues of orphan technology are key to the process of technology transfer, with small markets that have limited capital occasioning the need for subsidies, guaranteed financing for purchases, or other incentives for producers. Future technology transfer efforts at NIDRR will explore better linkages to the Small Business Innovative Research (SBIR) program, a government-wide program intended to support small business innovative research that results in commercial products or services that benefit the public. Innovativeness and probability of commercial success are both important factors in SBIR funding decisions. Building a Research Agenda Future rehabilitation engineering research agendas must incorporate several cross-cutting issues, including small markets, and outcomes measures. In addition, research must continue to result in improvements in the functional capacities of individuals with sensory, mobility, and manipulation impairments. Telecommunications and computer access offer significant potential to improve participation of persons with disabilities in all facets of life. Continuous innovations in these areas require that the needs of persons with various disabilities be recognized and accommodated. Finally, access to the built-environment remains a critical need for persons with disabilities, and thus requires ongoing research. The purpose of NIDRR's research in the area of technology is to: (1) Develop assistive technology that supports persons with disabilities to function and live independently and obtain better employment outcomes; (2) Develop biomedical engineering innovations to improve function of persons with disabilities; (3) Promote the concept and application of universal design; (4) Remove barriers and improve access in the built environment; (5) Ensure access of disabled persons to telecommunications and information technology, including through the application of universal design principles; (6) Ensure the transfer of technological developments to other research sectors, to production, and to the marketplace; (7) Identify business incentives for manufacturers and distributors; (8) Identify the best methods of making technology available to persons with disabilities; (9) Ensure that research and development at both the personal and systems levels takes into account cultural relevance for diverse ethnic and geographic populations; (10) Develop rehabilitation engineering science, including a theoretical framework to advance empirical research; and (11) Raise the visibility of engineering and technological research for persons with disabilities as a consideration in national science and technology policy. Future Research Priorities for Technology NIDRR's research priorities in engineering and technology will help improve functional outcomes and access to systems technology in the areas of sensory function, mobility, manipulation, information communication, and the built environment, and promote business involvement and collaboration. Research to Improve or Substitute for Sensory Functioning Sensory research is directed toward the problems faced by individuals who have significant visual, hearing, or communication impairments. These major conditions have been the focus of a long tradition of engineering research emphasizing both expressive communication and the receipt of information. Research priorities in the area of sensory functioning will focus on enhancing hearing, addressing visual impairments, and accommodating communication disorders. In the area of hearing impairments, specific research priorities include: (1) Development and evaluation of hearing aids that exploit the potential of digital technology, use advanced signal processing techniques to enhance speech intelligibility, attain a better fit, and ensure compatibility with telecommunications systems and information technology; (2) Evaluation of the application of digital processing techniques to assistive listening systems; (3) Evaluation of modern methods of sound recognition in alerting devices; and (4) Development of interfaces for assessment of automatic speech recognition systems. In the area of vision impairments, specific research priorities include: (1) Identification and evaluation of methods to enhance accessibility of visual displays; (2) Development and evaluation of graphical user interface technologies for various document and graphic processing systems; and (3) Improvement of signage in public facilities. [[Page 45768]] In the area of communication impairments, specific research priorities include: (1) Identification and evaluation of technologies to enhance the communication abilities of persons who are deaf-blind; and (2) Assessment of the capacity of research in cognitive science, artificial intelligence, biomechanics, and human/computer interaction to improve the rate, fluency, and use of communication aids. Research To Enhance Mobility Mobility research is directed toward the problems associated with moving from place to place. Mobility can be enhanced by accessible public transportation; modified privately owned vehicles; wheeled mobility devices such as wheelchairs; orthoses, and prostheses; and barrier removal. In the area of enhancing mobility, specific research priorities include: (1) Development, evaluation, and commercialization of wheelchair designs that reduce user stress, repetitive motion injury, and other secondary disabilities, while improving safety, ease of maintenance, and affordability; (2) Revision and dissemination of wheelchair standards; (3) Development and evaluation of techniques to assist consumers and providers in selecting and fitting wheelchairs and wheelchair seating systems; (4) Identification of a theoretical framework of gait and other aspects of ambulation; (5) Development and evaluation of advanced prosthetic and orthotic devices, as well as footwear and other ambulation devices; (6) Development and evaluation of methods to improve person-device interfaces, post-surgical management and fitting, and materials used in bio-engineering applications; and (7) Development of devices to assist with ADLs for persons with disabilities and their caregivers. Research To Improve Manipulation Ability The manipulation area includes research directed toward restoring functional independence for persons with limited or no use of their hands. This encompasses upper extremity prosthetic and orthotic devices, and novel methods of upper extremity rehabilitation. Issues of weight, durability, and reliability remain challenges in this field. Repetitive motion injury is emerging as one of the most serious problems among workers. While there have been a number of ergonomic devices introduced to address this problem, the incidence of this condition continues to increase. In the area of improvement of manipulation, specific research priorities include: (1) Identification of methods to improve the design of and achieve multi-functional control for hand/arm prosthetic technology; (2) Development and evaluation of surgical approaches that increase functionality; (3) Development of assistive devices to address manipulation issues for individuals who experience serious weakness, fatigue, or pain, including that attributable to progressive deterioration of function; and (4) Development and evaluation of devices and techniques to minimize the onset of repetitive motion injuries and to rehabilitate those with the condition. Technology To Enhance Cognitive Function Limitations in perception, processing information, organizing thoughts, concentration, memory, and decision-making may result from a range of etiologies--including mental retardation, traumatic brain injury, stroke, mental illness, dementia, and others--and may constitute substantial barriers to function and social integration. These barriers can be exacerbated by sophisticated technology interfaces that require memorizing sequences, reading or interpreting information, or responding to complex auditory or visual cues. Conversely, technology has the theoretical potential to simplify many daily activities and contribute to self-management and independence. There are three distinct levels of objectives in developing technology to meet needs of persons with limitations in cognitive functioning. The first of these is to assure that new technologies for communication, environmental control, and health maintenance, for example, are accessible to those with cognitive limitations and do not exacerbate their exclusion from mainstream activities. A second objective is to develop technologies that will assist persons with cognitive limitations in the performance of daily activities. Reminders and cueing devices, trackers and wandering devices, and portable instructional technologies are among the approaches to enabling people with cognitive limitations to remember appointments and medications, locate themselves positionally, follow common instructions, or obtain assistance. A third objective that challenges researchers is the potential to develop technologies that can enhance or restore some cognitive functions. Automated systems to improve memory have been developed and tested, for example. As the fields of cognitive science and neurosciences, create a better understanding of the biology of cognitive functioning, and as there are concomitant advances in artificial intelligence and expert systems and in the flexibility of microprocessors, a new research frontier may emerge. Specific priorities in the area of technology to address cognitive limitations include: (1) Assessment of the state-of-the art in technology and its applications to address cognitive functioning; (2) Assessment of consumer needs and competencies to use various device features; (3) Development of technologies to improve job skills and improve employment opportunities; (4) Development of technologies to maximize independence and ability to perform ADLs and IADLs; and (5) Development of strategies to ensure that new technologies for the general population are accessible to persons with cognitive limitations. Research To Improve Accessibility of Telecommunications and Information Technology Computerized information kiosks, public web sites, electronic building directories, transportation fare machines, ATMs, and electronic stores are just some current examples of rapidly proliferating systems that face people living in the modern world. Research priorities will include development and evaluation of techniques to make such computerized information systems accessible to persons with a range of disabilities. The information technology and telecommunications industry trend away from standardized operating systems and monolithic applications and toward net-based systems, applets, and object-oriented structures has significant implications for accessibility for some persons with disabilities. Maintaining accessibility to the Internet and World Wide Web is also a formidable challenge facing individuals with disability. Another concern in telecommunications is electromagnetic interference from the rapidly proliferating wireless communications systems, (e.g., beepers, cellular telephones) and other electronic devices using digital circuitry (e.g., computers, fluorescent light controllers). This [[Page 45769]] interference is complicating the use of assistive listening devices. Moreover, interference caused by over-use of spectrum is presenting problems in the use of FM Assistive Listening systems. During the past decade, virtual reality techniques, originally developed by NASA and the military for simulation activities, have been applied in a number of other fields, including architecture and health. Applications can be found in telerobotic systems, sign language recognition devices, intelligent home systems, and aids for persons with visual impairments. There has been some beginning research on the use of virtual reality as an evaluation and therapy tool. Telecommunications also emerges in other important areas of the lives of persons with disabilities. In a managed care approach to health care, individuals are discharged from acute rehabilitation hospitals earlier than in the past. Because of the decreased length of stay, there is less time for consumers to learn how to manage their conditions. One promising option for ameliorating these effects is telemedicine or ``telerehabilitation.'' Telerehabilitation may allow for distance monitoring of chronic conditions and for monitoring consumer compliance and progress. In the area of telecommunications and information technology, specific research priorities include: (1) Development and evaluation of fine motor skill manipulation interfaces, telecommunication interfaces, and analog to digital communication technologies; (2) Identification of methods to address issues of accessibility through Internet communications; (3) Development and evaluation of methods for reducing merging forms of interference that affect hearing aids, telephones, and other communication devices; (4) Determination of the efficacy of virtual reality techniques in both rehabilitation medicine and in applications that affect the daily lives of persons with disabilities; and (5) Identification of appropriate telecommunications strategies for use in distance follow-up to rehabilitation treatment. Research To Improve Access to the Built Environment The built environment includes public and private buildings, tools and objects of daily use, and roads and vehicles, any of which can be accessible or disabling. Architects, industrial designers, planners, builders, and engineers are among the professionals that create this environment. In the area of access to the built environment, specific research priorities include: (1) Analysis of human factors; (2) Development and evaluation of modular design; (3) Determination of best methods of disseminating information on universal design; (4) Development and evaluation of compatible interfaces; and (5) Development and promulgation of design standards. Future engineering research also must recognize the changing roles of consumers, whose participation in research is vital, and the role of assistive technology industries, whose technical capabilities and needs for product development and research are changing. Small businesses, the engine of the orphan technology industry, often cannot support sophisticated research and development efforts necessary to bring quality products to market. NIDRR's research can identify public policy issues, such as orphan technology and tax credits, to foster small business investment in assistive technology innovation. Similarly, NIDRR research can identify public policy and business issues related to mainstream systems and public technology. NIDRR will maintain a research capacity that provides a continuing stream of new ideas, and evidence to validate those ideas, to stimulate the industry. Chapter 6: Independent Living and Community Integration ``Whether we have disabilities or not, we will never fully achieve our goals until we establish a culture that focuses the full force of science and democracy on the systematic empowerment of every person to live to his or her full potential'' (Justin Dart, February 1998 (edited) ON A ROLL RADIO, http://www.onarollradio.com). Overview Independent living and community integration concepts and outcomes are key foci of NIDRR research. Central to independent living is the recognition that each individual has a right to independence that comes from exercising maximal control over his or her life, on an ability and opportunity to make choices in performing everyday activities. These activities include managing one's own life; participating in community life; fulfilling social roles, such as marriage, parenthood, employment, and citizenship; sustaining self-determination; and minimizing physical or psychological dependence on others. While independent living emphasizes maximal independence, whatever the setting, it is, by its vary nature, a concept that also emphasizes participation, especially participation in community settings. For this reason, NIDRR is proposing to integrate its research agenda in independent living and community integration to encourage interdisciplinary thinking about the interrelationship, to achieve more successful outcomes for persons with disabilities, and to foster the development of innovative methods to achieve these outcomes and to measure the achievements. Independent Living and Community Integration Concepts One framework for formulating this research agenda recognizes that independent living has been used to describe a philosophy, a movement, and a service program. At a philosophical level, independent living addresses the question of equity in the right to participate in society and share in the opportunities, risks, and rewards available to all citizens. It provides a belief system to a generation of people with disabilities. The new paradigm of disability is an outgrowth of this philosophical concept of equity, bringing social and environmental elements to the meaning of disability. At a movement level, independent living has been integral to the development of the disability rights movement. This movement primarily has used a civil rights approach to demand equal access for persons with disabilities, leading most notably to the passage of the Americans with Disabilities Act (ADA) in 1990. These movement activities have had a significant impact on disability policy and will continue to be examined as part of NIDRR's Disability Studies funding. At the service system level, more than 300 centers for independent living receive funding under the Rehabilitation Act and these centers foster and enhance independent living for persons with disabilities. In addition, both Federal and State funds support community-based residences for members of the developmentally disabled community as well as members of other disability groups. In the past NIDRR has supported research to develop management strategies for these centers. Community integration also has conceptual, movement, and service delivery components. As a concept, it incorporates ideas of both place and participation, in that community integration means not only that a person [[Page 45770]] is physically located in a community as opposed to an institutional setting, but that the individual participates in community activities. Issues of consumer direction and control also are integral to concepts of community integration. As a movement, community integration had a primary goal of deinstitutionalization of persons with mental retardation or mental illness and has succeeded in moving many individuals from large institutional settings back into the community. The deinstitutionalization movement arose from a confluence of consumer advocacy, judicial decisions, research efforts, and public policy reforms. During the last 30 years, deinstitutionalization decreased the number of individuals with mental retardation and mental illness residing in state institutions by more than 75 percent. In addition, advocacy organizations for people with physical disabilities have implemented the movement aspects of community integration in their demand for community-based supports and services. At the service system level, community integration has resulted in development or expansion of a range of services and programs designed to support individuals with disabilities to live in their communities. For instance, individuals who need assistance with ADLs, such as bathing, dressing, or ambulation, often need personal assistance services (PAS) to live independently in the community. In the traditional service delivery model, long-term care agencies supply PAS by providing home health care aides to individuals. These aides tend to work under the direction of professional health care providers and perform a restricted set of tasks in time frames determined by the agency. A support model, however, shifts the locus of control to the consumer, who is responsible for recruiting, hiring, training, supervising, and firing assistants. Expanding the Theoretical Framework NIDDR proposes the continued development of a knowledge base about the meaning and application of independent living and community integration concepts. This theoretical approach will address issues of inclusion, bases for participation, and ways in which persons identify their communities. This effort will be interdisciplinary in nature and will draw from disciplines such as anthropology, sociology, social psychology, history, Disability Studies, engineering, and medicine. Each of these disciplines have offered various interpretations of the issues at the core of the concept of community. Anthropologists have defined community to emphasize a shared culture or a way of organizing and giving meaning to life events. Sociologists have discussed community as an organized group dealing with common issues in relation to other organized groups within an environment. Historians have defined community as a web of relationships creating a social order within a political and spatial context that often focuses on issues of who is legitimately a community member. In the world of disability and rehabilitation, community also has had multiple meanings. In medical rehabilitation, return to community usually refers to life outside a medical facility, typically the community in which an individual resided before an injury or illness. In the disability world, community sometimes means the community of those living with a disability, those who share experiences or identity. To go from theory to practice involves identifying the necessary factors for achieving independence within a community setting. In recent years, there has been a shift from a traditional service delivery model to a model that emphasizes consumer direction and support. As a consequence, individuals with disabilities of all types have shifted from a dependence on agency service providers to an active use of community-based supports. In the support model, consumer choice, customization of needed services, and consumer empowerment are of increased importance compared to the traditional model in which service agencies emphasized professional competence, accountability, and quality control by service providers, and the safety of clients. Also, in the support model, persons with disabilities are perceived as self- directed, able, and mainstreamed as opposed to being helpless and objects of care in the traditional model. Implications for research focus on investigation of major physical and societal environmental factors, including physical accessibility; societal attitudes and policies; and availability of services, supports, and assistive technology that facilitate full participation. The emphasis on social and policy barriers inherent in the new disability paradigm provides an incentive to examine the extent to which the ADA has contributed to independent living and community integration. The ADA applies a civil rights model in addressing societal policies and practices that create barriers to full participation in society. If, however, the ADA is to have a truly transformative impact on American society, there must be a vision of a non-discriminatory society against which progress can be measured. At present, there are no real benchmarks by which to assess the ADA's impact. Evaluations tend to be in terms of ``cases'' handled, complaints resolved, lawsuits won, physical barriers removed, or volumes of information assembled rather than the extent to which the ADA has resulted in greater participation in society by persons with disabilities. The growing realization of the importance of environmental barriers in disability focuses concern on environmental changes that have the potential to impede or facilitate independent living and community integration. Perhaps most striking are the continuous developments in telecommunications and information technology. Accessible computers and Internet infrastructure as well as universal or specialized communication devices afford access to information and interactions among persons with disabilities, their families, advocates, service providers, employers, and others. Careful planning, based on research, will be a requirement for ensuring that new technologies increase participation rather than isolation for persons with disabilities. Directions of Future Research on Independent Living and Community Integration The purpose of NIDRR's research in the area of independent living and community integration is to facilitate participation of persons with disabilities in society by: (1) Identifying and evaluating factors or domains of community integration and independent living, especially those aspects that lead to full participation in society; (2) Identifying and evaluating community support models that promote community integration and independent living outcomes for individuals with all types of disabilities and from a full range of cultural backgrounds; (3) Providing empirical evidence of the impact of consumer control on outcomes associated with community integration and independent living; (4) Assessing the impact of environmental factors on individual achievement of community integration and independent living; (5) Developing and disseminating training on independent living and [[Page 45771]] community integration concepts and methods for consumers, families, service providers, and advocates; and (6) Developing and evaluating management tools to enable centers for independent living and other community programs to support independent living and community integration. Future Research Priorities in Independent Living and Community Integration Research will analyze the implications of shifting from services to supports for the individual and must develop an in-depth understanding of the role of supports in facilitating community integration and independent living. Research on Community Integration/Independent Living Concepts Both personal experience and certain academic disciplines provide guidance for understanding community integration and independent living. Development of an integrated conceptual framework will facilitate rigorous research on how to use community integration and independent living concepts to improve the lives of persons with disabilities. Additionally, research must find ways to measure these outcomes in order to evaluate services provided to persons with disabilities. Specific research priorities include: (1) Review of relevant scholarship and creation of a theoretical framework for the study of community integration and independent living that incorporates the real world experiences of persons with disabilities, and includes knowledge gained from Disability Studies; (2) Development of measures that build upon the conceptual framework, and that can be applied to evaluation or rehabilitation intervention intended to increase independence and integration; and (3) Analysis of cultural perspectives as facilitators-obstacles to independent living and community integration. Research on Implementation of Community Integration/Independent Living Concepts The independent living and community integration movements have contributed conceptual standards for evaluating disability and medical rehabilitation services and programs. Further research is needed on how to apply these concepts in different real-world settings. currently, many programs and services do not reflect these concepts and, consequently, often provide services that do not incorporate consumer direction or allow consumer choice. Specific research priorities include: (1) Identification and assessment of models of service delivery that incorporate concepts of independent living and community integration and reflect understanding of the importance of environmental barriers; and (2) Development and dissemination of training materials on independent living and community integration concepts for consumers, families, service providers, and advocates. Research on Measures of Independence and Community Integration To evaluate how programs and services contribute to the outcomes of independence and community integration, researchers, policymakers, and consumers must have adequate measures of these outcomes. As discussed elsewhere in this plan, NIDRR is placing special emphasis on development of measures of the interrelationship between the individual and the environment. Concepts of independent living and community integration are integral to that process. Specific research priorities include: (1) Development of measures of independence and community integration that are consumer sensitive and that measure the impact of the environment and accommodation on these outcomes; and (2) Evaluation of strategies to promote independence, inclusion, and participation. Research on Physical Inclusion Housing, transportation, communication, and architectural barriers limit the physical inclusion of persons with disabilities. Lack of funding also affects access to these necessary community supports and funding constantly changes because of policy decisions at the Federal and State levels. Specific research priorities include: (1) Identification and evaluation of models that facilitate physical inclusion, including the development and evaluation of supported housing and transportation models that are consistent with consumer choice; and (2) Investigation of the impact of managed care on access to services and equipment that provide support for physical inclusion. Research on the Impact of the ADA The impact that the ADA has had or will have on participation in society currently is unknown. It is important to identify the obstacles to optimal achievement of the goals of the ADA. Specific research priorities include: (1) Evaluation of the impact of the ADA on community participation of persons with disabilities and on the achievement of independent living and community integration outcomes; (2) Examination of questions of accessible infrastructure, employment patterns, civic participation, recreational activities, societal attitudes, and policies to determine what post-ADA policy initiatives may be required to attain full participation by persons with disabilities; and (3) Analysis of the extent to which the ADA has affected other public policy initiatives. Research on the Impact of Technological Innovation While the potential benefits of technological innovations are often assumed, there also are potential issues about accessibility, equity, and application of communications technology and how these issues affect independent living and community integration. Specific research priorities include: (1) Assessment of the impact of applications of telecommunications innovations on independent living and community integration outcomes; (2) Identification of barriers to participation in the community, including those resulting from inequitable distribution of technology or reduction of interpersonal contact; and (3) Exploration of potential innovative applications of telecommunications and information technologies to expand opportunities for informed choice, independence, communication, and participation. Research on Increasing Personal Development and Adaptation NIDRR previously has funded personal skills development training to assist people with disabilities to live in the community. This training includes skills related to behavior management, communication, and productive work. In the area of behavior management for people with mental retardation and mental illness, strategies have focused on minimizing ``challenging behaviors.'' Specific research priorities include: (1) Identification of strategies that promote development of self advocacy skills, including social and communication tools to assist people with disabilities to live in community settings; (2) Analysis of the influences of environmental factors in developing positive behavioral support models; [[Page 45772]] (3) Development of cost-effective techniques to foster the capacity of providers; educators, and families to prevent or respond to challenging behavior; (4) Assessment of the potential role of technology in promoting personal development and adapation in community settings; and (5) Development of strategies and tools to improve consumer choice and decisionmaking about assistive technology and to assess its performance. Research on Personal Assistance Services It is important to test hypotheses about the role of personal assistance services (PAS) in promoting community integration, return to work, and health maintenance, and the impact on the use of health care and institutionalization dollars. The relative value of different PAS systems for disabled individuals of varying ages, disability types, ethnic groups, and personal independence goals is unknown. Although research has demonstrated the impact of consumer-directed PAS models on consumer satisfaction, the relationship of satisfaction to quality of life and other outcomes measures needs further explication. Specific research priorities include: (1) Evaluation of the quality-of-life and cost-effectiveness outcomes of consumer-directed services; (2) Analysis of the impact of PAS on participation in employment; and (3) Evaluation of the impact of assistive technology on need for and use of personal assistance services. Research of Social Roles Public policy research is needed to examine how rules and regulations of public programs affect achievement of desired roles by people with disabilities. Marriage, parenthood, and employment are among the social roles that are often discouraged by legislation, regulations, policies, and practices. Specific research priorities include: (1) Investigation and documentation of the ways in which Federal, State, and local legislation, regulations, policies, and practices impact on social role performance of persons with disabilities; and (2) Identification and evaluation of tools to assist persons with disabilities in fulfilling their social roles. Research on Social Integration and Self-Determination. The abilities to form mutually rewarding and non-exploitative friendships, to recognize and express personal preferences, to evaluate options and make decisions, to advocate for oneself, and to adapt to changes in circumstances are attributes that contribute significantly to independent living and community integration. Specific research priorities include: (1) Identification and evaluation of service delivery models that incorporate individual choice and consumer control into strategies for achieving social integration and self-determination; (2) Development of measures to evaluate independent living and community integration in terms of inclusion, social integration, and self-determination; and (3) Assessment of the prevalence of abuse and violence in community settings and development of strategies to minimize their occurrence. Research on Management Tools for Centers for Independent Living and Community-Based Residential Programs NIDRR has previously funded research on effective management strategies for centers for independent living, as well as research on community residential living for individuals with mental retardation and long-term mental illness. Continued research in these areas will evaluate the effectiveness of current systems and address the challenges to these programs in their expanding roles. Specific research priorities include: (1) Development of strategies for centers for independent living to succeed in their roles with State rehabilitation agencies, and other agencies and groups concerned with independent living; (2) Development and evaluation of strategies for centers for independent living and community based residential programs to design and adapt programs that address the changing nature of the disability population; and (3) Development and evaluation of strategies for centers for independent living to respond to increased emphasis on ADA issues, such as accommodation, accessibility, and universal design; and (4) Investigation of applications of new information technologies in management of centers for independent living and community based residential programs. Research to facilitate community integration and independent living will focus on strategies to make communities, social systems, public policies, and the built environment more accessible to persons with disabilities and more supportive of their independence and participation. In the new paradigm scenario, the emphasis will be on supports rather than services, the managers of support systems will increasingly be persons with disabilities themselves, and services originally designed for application in institutions will be adapted for use in the general community. Chapter 7: Associated Disability Research Areas ``I make no claim, as other people with a disability might, that the essence of what I experience is inherently uncommunicable to the able-bodied world. I do not believe that there is anything in the nature of having a disease or disability that makes it unsharable or even untellable'' (Irving Zola, 1935-1994). Several important issue areas cut across the four research areas-- Employment, Health and Function, Technology for Access and Function, and Independent Living and Community Integration--described in the earlier part of this section. Disability statistics, disability outcomes measures, Disability Studies, rehabilitation science, and disability policy research are all integral to successful completion of a comprehensive agenda in disability and rehabilitation research. NIDRR will fund research efforts in each of these areas during the next five years to enhance NIDRR's overall research program and contribute to NIDRR's achieving its goals of helping people with disabilities attain maximal independence. Priorities for each research area are discussed below. Disability Statistics NIDRR has several purposes in advancing work in disability statistics. First, it is important to maximize the usefulness of data currently collected in reliable national data sets. Second, it is important to encourage the creation and analysis of research databases, including meta-analyses focused on problems such as employment rates or utilization of health care or social services. Third, NIDRR seeks to understand the composition of a possible emerging universe of disability created by new disabilities or socioeconomic variations in the distribution of existing disabilities. These changing areas have implications for both public health and rehabilitation. Fourth, NIDRR wants to assist in providing input to the formulation of national disability statistics policy, including the incorporation of measures relevant to the new paradigm of disability. Finally, NIDRR recognizes the need for surveys to be conducted in accessible formats, and for disability demographic and statistical data to be readily available to a wide range of audiences. Data about the incidence, prevalence, and distribution of disability and the characteristics and experiences of disabled persons, are critical to [[Page 45773]] planning research and services, evaluating programs, and formulating public policy. These data may be generated by diverse sources such as national population surveys, program data collection on participants, and researcher-compiled data sets relevant to specific research areas. Other, less prominent sources include State and local surveys, advocacy organization data, and market research data. Existing data resources are of varying degrees of completeness and quality, and are not sufficiently comprehensive in scope or perspective. None takes into account the new paradigm of disability that examines the interaction between the individual and the environment, and requires measures of environmental as well as individual factors that continue to disability. NIDRR has taken a lead role in elucidating the connection between impairment and the supports or limitations imposed by the built and social environments, and will initiate the process of developing new survey measures to define disability accurately and reliably in the context of both individual and environmental factors. Research Priorities for Disability Statistics NIDRR will continue to support the secondary analysis of major national data sets, especially the Disability Supplement to the National Health Interview Survey, identifying information and connections not considered by the survey sponsors. NIDRR's other focus will be the refinement of the disability data effort to reflect new paradigm concepts. Specific research priorities include: (1) The elucidation of salient issues or the stimulation of further research questions through meta-analyses; (2) Development and evaluation of state-of-the-art measurement tools that will assess the complex interactions between impairment and environment; (3) Development and evaluation of strategies to ensure that disability statistics accurately capture information on underrepresented minorities and emergent disabilities; (4) Development and evaluation of methods for ensuring the dissemination of disability statistical data to diverse audiences; and (5) Development and testing of accessible survey instruments and protocols. Rehabilitation Outcomes Measures The important of demonstrating outcomes across service settings, programs, and research efforts cannot be overemphasized, given resource allocation issues and concerns about value that operate at every level of our society. Demonstrating outcomes is an integral part of NIDRR's research agenda now and in the future. For purposes of discussion, several categories of outcome measures are presented. In practice, however, these measures may not be mutually exclusive. One area in which significant prior work on outcomes measures has occurred is medical rehabilitation. A number of measures have been developed and integrated into service delivery and research settings. Examples of these measures include impairment specific measures such as the NIH Stroke Scale, disability measures like the Functional Independence Measure (FIM), and measures of handicap such as the Craig Hospital Assessment and Reporting Technique (CHART). Many of these measures, however, have been validated narrowly and are not applicable across disability groups. Some were developed for hospital settings and require revision for use in post-acute programs or in community settings. The new focus on long-term outcomes requires measures that can document changes over time. Use of an outcomes-based approach also has ramifications for sample design, in terms of identifying homogeneous groups of consumers for comparison and using effective risk-adjustment methodologies. New managed care approaches have resulted in demands by people with disabilities for outcomes monitoring to ensure that quality care standards are met. This concern for measurable outcomes, based on quality standards, also is evident in the payer community, which has raised questions about evidence of the efficacy of treatments. Consumers have expressed particular concern about quality assurance in the area of assistive technology. NIDRR will support investigations to identify and develop evaluation methodologies and outcome measurement models for consumer assessments of assistive devices. Expanding the focus of outcomes research to incorporate measures of environment and accommodation is critical to continued implementation of a new paradigm of disability. At the present time, our ability to describe the interaction of individual and environment is limited by a lack of validated measures. A number of conceptual and methodological concerns must be addressed in developing such measures. Of particular relevance is how best to account for the impact of numerous variables, including environmental factors, that impinge on long-term outcomes. Independence and community integration have been identified as overarching NIDRR goals, and NIDRR's research initiatives relate directly to supporting achievement of these goals. As indicated earlier, some measures of community integration are already in use, including CHART and the Community Integration Questionnaire (CIQ). These measures, developed for specific populations, are examples of tools that might be refined to monitor and compare progress toward goals of independence and community integration. Distinctly related to functionally oriented medical outcomes measures are measures of quality of life. These measures are conceptually linked to individual values about living with disability and include the impact of rehabilitation and environmental barriers. A particular challenge in developing these measures is the qualitative nature of individual valuation of life quality and the difficulty of constructing ways of comparing individual perceptions. Research Priorities for Rehabilitation Outcomes Measures NIDRR will support research and development activities that increase the availability of measures across the areas discussed in this section. Specific research priorities include: (1) Refinement of exiting measures of medical rehabilitation effectiveness to improve assessment of functional ability by incorporating environmental factors, and to increase applicability to all disability populations and rehabilitation settings; (2) Development and evaluation of measures of independence, community integration, and quality of life, especially measures that incorporate the perspectives of persons with disability; and (3) Development of measures for use in outpatient and community- based settings. Disability Studies The field of disability and rehabilitation research has not reached a general consensus on the meaning of the term ``Disability Studies.'' NIDRR uses the term generally to refer to the holistic study of the phenomenon of disability through a multidisciplinary approach that emphasizes the perspectives of persons with disabilities and regards personal experience as valuable data. The IOM, in Enabling America, describes Disability Studies as ``the examination of people with disabling conditions and cultural response to them through a variety of [[Page 45774]] lenses, including . . . economics, political science, religion, law, history, architecture, urban planning, literature. . .'' (1997, p. 289). NIDRR believes that Disability Studies is a natural complement to the new paradigm, emphasizing study of the complex relationship between various aspects of disability and society, and will enhance the methodologies and knowledge base of each involved scientific discipline. In this respect, the content of Disability Studies is not unlike that of other area studies, such as Women's Studies, African-American Studies, or geographic, regional or ethnic studies (e.g., Middle Eastern Studies or Islamic Studies). All of these areas of study require the convergence of theory, technique, and methodology from a range of disciplines to develop an enhanced understanding of a complex phenomenon. Another purpose for the development of any area of studies is to assure that the perspective of the group under study is reflected in the methodology and body of core knowledge, and that individuals from the group have the opportunity to participate in the development and promulgation of the methodologies and the curricula. This also can be expected to lead to an impact on core disciplines, specifically an impact that requires development of theories and hypotheses that do not ignore the subject population. For example, Women's Studies have influenced the development and legitimation of studies of the sociology of gender within a discipline that 30 years ago relegated the study of women, when they were studied at all, to home economics or family relations. Economists analyzing poverty now must consider the particular causes and effects of poverty among women and in ethnic groups, largely due to the attention and legitimation of these subjects by the ``area studies'' efforts. NIDRR has three basic purposes for supporting a program of Disability Studies. First, disability and rehabilitation research needs a body of knowledge that is comprehensive and holistic, reflecting a range of disability perspectives, and it needs a larger cadre of researchers and policymakers familiar with that knowledge base. Second, the field of disability and rehabilitation research needs to develop methodologies and influence the theories and practices of a range of disciplines in order to ensure their constructive attention to the issues related to disability, thereby enhancing the scientific endeavor. Third, consistent with the goals of the Rehabilitation Act, as amended in 1992, especially its principles of inclusion, integration, and independence, NIDRR believes it is important to reflect the perspectives of individuals with disabilities in studies of disability and to afford increased opportunity for individuals with disabilities to participate in the development of curricula and methodologies to study the phenomenon of disability. Research Priorities for Disability Studies Specific research priorities for Disability Studies include: (1) Development of a theoretical framework for conducting Disability Studies and strategies for teaching Disability Studies at various academic and non-academic levels; (2) Compilation of information about the many forms of extant Disability Studies, including academic levels, disciplines involved, course content, resources, and students; and (3) Exploration of the feasibility of developing non-academic courses in Disability Studies that will facilitate the study of the experience, history, and culture of disability in community-based settings. Rehabilitation Science Permeating NIDRR's research agenda will be an awareness of opportunities to construct and test a theoretical framework for rehabilitation science. As defined in the 1997 IOM report, Enabling America, rehabilitation science is a study of function, focusing on the processes by which disability develops, and the factors influencing these processes. Its goals are to contribute to better treatment and technology for persons with disabilities. Rehabilitation science focuses on factors that lead to transitions along a continuum from underlying pathology to functional independence, including impairment, functional limitation, and disability. In addition, it analyzes physical, behavioral, environmental, and societal factors that affect movement along the continuum (Brandt & Pope, 1997). The field of rehabilitation has produced a body of empirical evidence regarding function and interventions to improve function. The next challenge is to use this evidence to produce a body of scientific and engineering theory that can be applied to the development of breakthroughs in functional restoration techniques. Research Priorities for Rehabilitation Science Specific research priorities for rehabilitation science include: (1) Further elucidation of the enabling-disabling process; and (2) Exploration of the development and application of a theoretical framework for rehabilitation science. Disability Policy Public disability policy broadly defines the participation of disabled persons in the general benefits society provides to all citizens, as well as the parameters of disability-specific benefits. Public policy has more significance for people with disabilities and their families than for many segments of the population. This differential impact stems, in part, from the fact that people with disabilities must interface with so many different components of public policy systems, many of which are conflicting or inconsistent, such as employment goals and requirements for income assistance programs. The larger public policy content for disability and rehabilitation research reflects interlinking service delivery systems in which changes in one system often have substantial impact on others. The dilemma for disability and rehabilitation policy is that the various systems are not mutually reinforcing. The lack of mutual reinforcement stems from four factors. First, policy goals may be, to some degree, mutually exclusive; that is, policies designed to emphasize one goal may be implemented only at the expense of other goals. Second, different policies are governed by different and conflicting assumptions about disability and the role of people with disabilities in American society. Third, some service systems lack integration with other systems and programs needed to promote continuity between different parts of people's lives. Fourth, disability has been largely ignored in national science and technology policy. Thus, underlying conflicts may exist and result in unintended disincentives to work and independence. At the systems and societal levels, the potential impact of policy initiatives on persons with disabilities may be even more significant, although more likely to go unrecognized. The impact of telecommunications, the built environment, health care, and labor market policies have been discussed in this Plan. Research Priorities for Disability Policy Disability policy research should examine issues that are national in scope and that represent intersections of public interest. Such research should use national data sets, where possible, to determine the impacts of policy [[Page 45775]] decisions on persons with disabilities. Specific research priorities include but are not limited to: (1) Analysis of how the bundling of income supports with other benefits, including health insurance and other in-kind assistance such as housing subsidies or food stamps, affects individual decisions to seek or continue employment; (2) Evaluation of the impact of changing social policies toward parenting, personal assistance services, tax deductions, or education, among other factors; (3) Analysis of the impact of welfare-to-work initiatives on the well-being of persons with disabilities or their families; (4) Evaluation of the impact of macroeconomic issues, such as changing labor force requirements, on employment opportunities of persons with disabilities; (5) Evaluation of the impact of legislation and policy on employers, professional service providers, social service agencies, and direct support workers in terms of their participation in employing, serving, or working for disabled persons; (6) Investigation and evaluation of the relevance of frameworks for disability research, including but not limited to research on the role of market forces (balancing supply and demand) on disability policy; (7) Investigation of the impact of national telecommunications and information technology policy on the access of persons with disabilities to related education, work, and other opportunities; and (8) Examination of the impact of national housing policy and building codes on the living environments and housing choices of persons with disabilities and their families. Related disability research emphasizes knowledge areas that are cross-cutting and essential to the support and refinement of disability research generally. The common theme linking disability statistics, outcomes measures, Disability Studies, rehabilitation science, and disability policy is that they all provide essential frameworks building blocks that enable the disability research and enterprise to thrive and to address important issues in meaningful ways. Chapter 8: Knowledge Dissemination and Utilization ``Our mission at the Office of Special Education and Rehabilitative Services is to ensure that people with disabilities become fully integrated and participating members of society. Dissemination and utilization are the tools through which we do this'' (Judith E. Heumann, OSERS Assistant Secretary). Overview Effective dissemination and use of disability and rehabilitation research are critical to NIDRR's mission. Research findings can only improve the quality of life of people with disabilities and further their full inclusion into society if they are available to, known by, and accessible to all potential users. NIDRR supports a strong dissemination and utilization program that reaches its many constituencies: Research scientists, people with disabilities, their families, service providers, policymakers, educators, human resource developers, advocates, entities covered by the ADA, and others. In carrying out this mission, NIDRR's challenge is to reach diverse and changing populations; to present research results in many different and accessible formats; and to use technology appropriately. The Rehabilitation Act's 1992 amendments included language requiring NIDRR to ensure the widespread distribution, in usable formats, of practical scientific and technological information generated by research, demonstration projects, training, and related activities. In addition, NIDRR's responsibilities were amended to emphasize wide dissemination of educational materials and research results to individuals with disabilities, especially those who are members of minority groups or of unserved or underserved groups. In addition, the statute requires Rehabilitation Research and Training Centers (RRTCs) to serve as information and technical assistance resources to providers, individuals with disabilities, and others through workshops, conferences, and public education programs. Rehabilitation Engineering Research Centers (RERCs) are required to disseminate innovative ways of applying advanced technology and to cooperate with Tech Act projects to provide information to individuals with disabilities to increase their awareness of options and benefits from assistive technology. Effective dissemination employs multiple channels and techniques of communication to reach intended users. This chapter addresses strategies and techniques to disseminate information to a wide range of target audiences and to promote the utilization of this information. These strategies take into account a range of uses--conceptual or practical, total or partial, converted or reinvented. The strategies also incorporate innovative technologies to enhance direct access by diverse groups. Additionally, this chapter outlines NIDRR's proposed research agenda for dissemination and utilization activities. The Knowledge Cycle--The Role of Dissemination and Utilization The components of the knowledge cycle are knowledge creation, knowledge dissemination, and knowledge utilization. The concept of the cycle implies continuous interaction among its parts. At NIDRR, knowledge creation results from funded research and training programs, and staff activities. The challenge of NIDRR's dissemination and utilization activities involves transferring this knowledge, targeted to specific user populations, to improve the lives of persons with disabilities. Effective dissemination requires understanding that communication channels are continually expanding and range from personal communications to mass media (e.g., print, radio, television, the emerging information superhighway, and the merging of these and other communications technologies). To choose the most effective communication strategy, it is helpful to identify clearly the intended audience (e.g., scientists, service providers, persons with disabilities), the context for use (e.g., home, work, community), and the characteristics of the information to be disseminated (e.g., type, use, relative advantage, compatibility, complexity). Knowledge utilization activities focus on ways to facilitate use of research results, new technologies, and effective practices or programs. To be used, knowledge must relate to a perceived need, must be understandable, and must be timely. Thus, awareness of potential uses for the information should influence research design and materials development, keeping in mind that flexibility is important because there may be unanticipated audiences for the material. Selecting dissemination strategies that relay information quickly is equally important. The Changing Environment for Dissemination The environment in which dissemination and utilization strategies operate is being affected by a number of changes, including technological innovation, changing etiology of disability, and an increased emphasis on the individual's interaction with the physical and social universe. These changes must be factored into future [[Page 45776]] dissemination and utilization approaches. As Paisley notes, ``Many of the problems that challenge knowledge utilization have changed little since the 1960s and 1970s; however, the communications environment of knowledge utilization has changed dramatically (as cited in Southwest Educational Development Laboratory, 1996).'' Consumer demand for direct and rapid access to information, and the technological capacity to disseminate information simultaneously and inexpensively to mass audiences through electronic media, such as the World Wide Web, are changing dissemination and utilization strategies. The Internet, a beginning step in the creation of the global information superhighway, is open to anyone with a computer, modem, and telephone. The number, sophistication, and accessibility of Internet sites serving the information needs of people with disabilities are increasing rapidly. These innovations permit NIDRR projects and centers to communicate more easily with larger numbers of targeted users at all phases of the research process; however, this proliferation raises difficult questions about equity, access, and effectiveness (Southwest Educational Development Laboratory, 1996, p. 8). Changes in the prevalence and distribution of disabilities are influencing NIDRR's research. An emerging universe of disability, incorporating disability related to underlying social and environmental conditions such as poverty, isolation, and aging, has created new disabilities and new targets for dissemination of research findings. Finally, the importance of an ecological science model that focuses on relationships and interactions that influence, and are influenced by, the environment of an individual, organization, or community is receiving increased recognition. Research affects society; society, in turn, affects what is studied and how it is studied. NIDRR supports research that is issued-based and flexible to facilitate timely responses to environmental changes and timely contributions to society. Dissemination/Utilization Strategies for the Future In response to the needs of constituencies and to the changing physical and social environment, future dissemination and utilization strategies must build upon successful past strategies, while capitalizing on the potential of electronic media and other telecommunications innovations. These strategies must provide accessible formats for new population groups and for individuals with cognitive or sensory disabilities. To be successful, NIDRR grantees need assistance with early integration of dissemination and utilization features into research projects. Efforts will continue to increase the capacity of consumers to access and use research-based information. Finally, NIDRR will support research that will determine effective dissemination methods and evaluation techniques. In the section that follows, a number of dissemination and utilization activities are proposed. These proposed activities reflect NIDRR's concerns about the importance of dissemination in making research usable to its constituencies. Dissemination of Research Findings NIDRR, in order to enhance dissemination of research, will undertake a number of activities, including a national information center, creating databases, developing consumer partners, providing specialized assistance to grantees, using electronic media, targeting new audiences, and evaluating dissemination methods. Establishing a National Information Center NIDRR will establish a national dissemination center to address long-term dissemination and utilization objectives for individuals, groups, and communities representing diverse geographic, multicultural, and socio-economic populations. This center will provide technical assistance to grantees in improving their dissemination activities; conduct selected national dissemination projects; and serve as a resource on dissemination theory, new techniques, and evaluations of dissemination strategies. The center will maintain a web site and will work with groups of NIDRR grantees--for example, the Model Projects for Spinal Cord Injury--to develop accessible, special-focus web sites. In addition, the center will: (1) Publish research findings in refereed journals for the academic community; (2) Translate complex research findings into accessible language and format, in consumer-oriented publications; (3) Maintain a library and information center, such as the National Rehabilitation Information Center (NARIC), with archival and bibliographic retrieval capacity; and (4) Determine markets for NIDRR-funded research products and appropriate strategies for reaching these markets. Using Databases and Key Publications. To support knowledge dissemination and extend the availability of research products, NIDRR will: (1) Maintain a database of assistive technology products, such as ABLEDATA, that is accessible to consumers and service providers, and is available on the Internet; (2) Make key publications, such as NIDRR's Program Directory and Compendia of Research products, available on the Internet; and (3) Establish a management database to track dissemination activities and to identify research results suitable for further dissemination. Developing Consumer Partnerships To enlist the target populations in ensuring that disseminated research findings are relevant, accessible, and useful, NIDRR will: (1) Explore the potential for developing partnerships with independent living centers and State Vocational Rehabilitation agencies to identify, repackage, and market information specific to their needs; (2) Provide technical assistance to community organizations or public agencies to facilitate the adaptation of research findings into practical use; and (3) Provide technical assistance and training to consumers and consumer organizations on accessing, interpreting, and using new information, including training on use of electronic information sites and on providing feedback to the research process. Providing Specialized Assistance to Grantees in Their Dissemination Roles NIDRR Centers and other grantees are important information resources; and, to enhance their productivity in dissemination the results of their research, NIDRR will: (1) Promote the publication of research findings in scientific journals and in consumer-oriented publications; (2) Provide technical assistance for ``translation'' and marketing; (3) Develop inter-center and inter-project linkages for routine communication and sharing of information; (4) Assure timely availability of research findings and products in usable form for targeted user groups; and (5) Provide technical assistance on dissemination and utilization processes to constituency groups. [[Page 45777]] Using Electronic Media and Telecommunications Exciting developments in information technology greatly enhance the possibility of reaching more research information users in efficient and effective ways, and to capitalize on this potential, NIDRR will: (1) Explore the feasibility of an Online Disability New Service, focusing on government-funded research data; funding opportunities; updates from the legislative, judicial, and executive branches of government; awards; achievements; current issues; and problem solving attempts; (2) Initiate activities to improve the portrayal of individuals with disabilities in the media, including specialized media efforts directed toward the Nation's youth or diverse cultural groups; (3) Examine the role of distance learning approaches in dissemination; (4) Explore communications strategies for effective Internet searches for disability-related information, including directories of sites and a thesaurus of key words; and (5) Provide technical assistance and training to consumers and consumer organizations on accessing, interpreting, and using new information, including training on use of electronic information sites. Emphasize ways to increase the skills and access of elderly and minority consumers to the Internet and other electronic media. Reaching Out to New Audiences The changing nature of disability and of the disabled population require thoughtful efforts to reach new audiences. To facilitate these efforts, NIDRR will: (1) Ensure the accessibility--both in format and content--of all products disseminated by NIDRR and its grantees. This may include the use of alternate formats (e.g., Braille, large print, audiotape, captioned videos) or the use of language appropriate for persons with cognitive impairments or who are non-English speaking; (2) Improve dissemination of information from NIDRR-funded projects to consumer audiences of culturally diverse backgrounds as well as elderly people, newly disabled individuals, and other people with disabilities who may not be reached by traditional dissemination methods; (3) Target general audiences that influence the opportunities available to persons with disabilities. These general audiences include employers, manufacturers, educators at all levels, economic development and planning personnel, service establishments, the media, and policymakers at local, State, and national levels; and (4) Explore ways to involve people with disabilities in all aspects of the research cycle. Evaluation of Dissemination Methods Finally, while commercial media efforts are regularly evaluated, little has been done to assess the effectiveness of research dissemination strategies in the disability field. Given the central importance of dissemination to its broad constituency, NIDRR will: (1) Conduct projects to advance theories in dissemination and utilization and to evaluate the application of the various dissemination and utilization approaches; (2) Test methods for measuring the utilization and impact of research results for different target audiences; and (3) Evaluate the appropriateness and effectiveness of web-based dissemination and distance education models for conveying information to the range of target audiences. Chapter 9: Capacity Building for Rehabilitation Research and Training Overview To ensure that research improves the lives of individuals with disabilities, NIDRR will support efforts to enhance the capacity of the field to conduct research that is scientifically excellent and relevant to the concerns of disabled individuals, service providers and the science community. This research will be based in the contextual paradigm of disability, emphasizing cross-disciplinary efforts and participatory research that take into account trends in science and society, and that are reflective of disability culture. Capacity building involves training those who participate in all aspects of the disability research field, including scientists, service providers, and consumers. While NIDRR's programs have made significant contributions to creating the disability and rehabilitation research capability that exists in our Nation today, it will be necessary to refocus the content, and, to some extent, the structure of those programs to meet the emerging needs of science and consumers. NIDRR will make creative use of funding mechanisms to meet these challenges. Priorities in Capacity Building NIDRR interprets its capacity-building responsibilities as multifaceted. NIDRR's principal statutory mandate for training is to support advanced instruction for researchers and service providers. NIDRR also has an implied mandate, strengthened in the 1992 Amendments, to train consumers in the applications of new research knowledge and in the uses of assistive technology. To advance the disability and rehabilitation field, NIDRR will expand the scope of its capacity- building activities to: (1) Raise the level of rigorous qualitative and quantitative research and increase the use of state-of-the-art methodologies by providing advanced training in disability-related research for scientists, including those with disabilities and those from minority backgrounds; (2) Train rehabilitation practitioners in the application of research-generated knowledge and new techniques; (3) Develop the capacity of researchers to conduct research that explicates disability as a contextual phenomenon; (4) Prepare researchers to conduct Disability Studies that are holistic, interdisciplinary, and cognizant of the cultural context of disability; (5) Develop the capacity of researchers to conduct studies in new settings, (e.g., homes, work places, schools, recreational facilities, community-based organizations); and (6) Train consumers, family members, and advocates in the use of research findings, in part to facilitate participatory research efforts. Additional information on each of these priority areas is provided in the following sections. Training for Advanced Research Studies It is crucial to NIDRR's mission that research in disability and rehabilitation reflect sound science practices, using rigorous qualitative and quantitative methods. Adherence to sound methodology and research design strengthens the credibility of NIDRR's research and, consequently, the ability of NIDRR's constituencies to use the research findings in advocacy, service deliver, and policymaking. To this end, NIDRR will increase its emphasis on scientific rigor in generating research agendas and in reviewing research applications. Scientific rigor may encompass methodological approaches such as controlled studies, longitudinal studies, or increased sample size. Constructing carefully defined hypotheses tied to theory is an important element in improving research methods. For qualitative research efforts, rigor includes strict adherence to analytical frameworks, improved data collection methods, and careful selection of subjects. [[Page 45778]] The capability to conduct first-rate research depends on several factors: a commitment to learning the multiple skills required for designing scientific studies, selecting appropriate research methods, analyzing data, and interpreting findings. NIDRR will continue its support of research training initiatives, including those that target research training opportunities for minorities and persons with disabilities. This training focus reflects NIDRR's commitment to participatory research methods that enhance the relevance of research findings. Training in Application of Research Findings NIDRR Rehabilitation Research and Training Centers (RRTCs) will advance further the statutory requirement to train service providers in application of research findings to real-world needs of persons with disabilities. Training can occur at many levels, including pre-service, graduate, and in-service. NIDRR will support training aimed at transferring research findings into practical use. Such training must be sensitive to the rapidly changing service delivery environment, which is de-emphasizing inpatient care and experiencing growth in post- acute and community settings. Training in New Paradigm Research As discussed throughout this Plan, the new paradigm conceives of disability as a function of the interaction between impairments and other personal characteristics and the larger physical, social, and policy environments. Unidimensional and static measures of function, improvement, outcomes, and other aspects of disability and the rehabilitation process will not be sufficient. Any paradigm of science that limits research to modification of the disabled person's functions without including an equal emphasis on changing the person's environment is not an approach that can capture the important phenomena associated with living as a disabled individual. Nor will it accommodate scientific and social advances in the multiple, interactive sectors of society that will characterize life in the next century. Although developments in both the biological and biomechanical sciences will bring new treatments and devices that will improve personal functions, these advances must be adjusted to meet the demands of the person living in his or her environment of choice doing activities that are of significance to that individual. A framework for asking new questions for NIDRR-funded research has been provided by the major provisions of the ADA. Researchers must develop measures that capture the contributions of the social and physical environments to the disability. The need for researchers capable of investigating and explicating disability in context, and explaining the adapting process, has several implications for the research training endeavor. The training must: (1) Emphasize interdisciplinary research and design of methodologies that can test complex hypotheses; (2) Attract researchers from disciplines not usually involved with disability and rehabilitation research. These include law, economics, architecture, business, marketing, demographics, public policy, and administrative sciences, among others; (3) Incorporate an understanding of disability policy and Disability Studies among researchers in all disciplines; (4) Apply the principles of the ADA--universal access and accommodations--in all research areas; (5) Include consumers in the research endeavor; and (6) Focus on the ``adapting process,'' which comprises changes in individual performance in response to a physical limitation, and changes in the environment to better accommodate individual needs. The interaction of these changes provides the basis for understanding how best to proceed in improving participation for people with disabilities. Supporting Disability Studies The cultural context of disability is a key element in the emerging field of Disability Studies. Major societal changes have influenced how disability is perceived by those with disabilities and by those who study persons with disabilities. Persons with disabilities are now viewed as individuals who are adapting to challenges (e.g., personal assistance services, assistive technology use, access, accommodation, civil rights) in their response to society (e.g., sociopolitical analysis of activism, disability culture, independent living), and in society's response to them (e.g., stigma, policy, economics, transportation, housing). The merging of these issues into an encompassing academic area is the genesis of Disability Studies. In Disability Studies, there is a convergence of theory, technique, and methodology from a range of disciplines to develop an enhanced understanding of a complex phenomenon. The perspective of the subject group in Disability Studies is reflected in the methodology and body of core knowledge. Individuals from the subject group must have the opportunity to participate in the development and promulgation of the methodologies and the curricula. NIDRR has four long-term objectives for providing priority support to this area: (1) Creation of a body of knowledge that is comprehensive and holistic; (2) Training of a cadre of researchers and policymakers familiar with that knowledge base; (3) Inclusion of the perspectives of individuals with disabilities in designing curriculum and research to reflect the experiences of persons with disabilities; and (4) Creation of opportunities for individuals with disabilities to study, in a variety of settings, the history, politics, economics, sociology, literature, culture, psychology, and other aspects of disability. Increasing Capacity for Research Under New Conditions The research questions and the types of training needed for rehabilitation professionals will change as the paradigms of science change and economic realities force reductions in the duration of rehabilitation service programs. Many rehabilitation researchers today are accustomed to conducting research in hospital-based or other clinical sites, applying methodologies and protocols developed in these traditional settings. In the future, sites for conducting research and for training new rehabilitation scientists will be homes, work places, schools, recreational facilities, and community-based support programs. This change involves adapting to reduced access to subject and control groups, working with paraprofessionals and disabled peers in the data collection effort, and working with shared or preexisting databases. Future research on the effectiveness of interventions will be conceptualized, developed, tested, implemented, validated, and evaluated at venues other than hospitals, rehabilitation facilities, clinics, and other traditional service delivery sites. Increasing Consumer Capacity and Participatory Research Consumers and consumer organizations have important roles in the research endeavor, including planning research priorities, assessing real-world relevance, and educating researchers in the realities of their aspirations, needs, obstacles, and daily living conditions. Consumers must also review and evaluate research findings [[Page 45779]] and reinterpret them for application to their lives. Finally, consumers can disseminate and advocate for research. The disabled individual as a whole person operating in a given environment is the focus of NIDRR's research, and it is important that individuals with disabilities willingly provide data about themselves in the role of research subjects. Consumers are more likely to trust the research endeavor if they believe it is relevant to their needs or if they believe it is conducted with appropriate sensitivity to their concerns. NIDRR will continue to take an active role in forging cooperative partnerships between researchers and the disability community. These endeavors must feature an honest and respectful exchange of knowledge and seek cooperative endeavors around common ground. Study of the social, contextual, and environmental aspects of disability provides a promising impetus for the new, strengthened partnership. NIDRR will support participatory research and Disability Studies as strategies to achieve the goals of an informed and active consumer community. Education, training, awareness, and partnerships are among the techniques that will be used to address this goal. NIDRR has supported the principle of appropriate and effective participatory research, that is, research that incorporates the perspectives and efforts of persons with disabilities. Participatory research is evaluated by standards of scientific excellence and real- world relevance. NIDRR grantees have developed a number of innovative approaches to implement this principle of participatory research. Additional study of participatory research concepts, fundamental principles, operating guidelines, and most appropriate applications, will enhance its future use. NIDRR will sponsor research on the conditions under which participatory research enhances the process and improves the products of research. NIDRR will sponsor research, development, demonstration, and dissemination efforts to enhance the understanding of participatory research applications and techniques. Funding Mechanisms To Enhance Capacity Building Clearly, there has been a shift in the social and scientific paradigms used to define, study, and explain disability. Consequently, the training models, research methods, and issues studied also must change. Funding excellent research projects depends, to a large extent, on the quality of grant applications. In turn, the subject matter and quality of research reflect the competencies the investigators acquired in their training. The context for training is nested in the types of programs funded by NIDRR. NIDRR will expand these existing mechanisms-- Rehabilitation Research and Training Centers (RRTCs) and Rehabilitation Engineering Centers (RERCs), Advanced Rehabilitation Research Training Grants (ARRTs), Switzer Enhancement Programs--to help meet future challenges. Rehabilitation Research Training Centers and Rehabilitation Engineering Research Centers NIDRR has a long tradition of funding RRTCs at universities, medical rehabilitation facilities, and vocational and social service agencies. Recently, training has been given increased importance in the mission of the RERCs as well. Enhancing the capacity to conduct disability and rehabilitation research requires planning and coordination of three key components of research training: mentors and trainers, relevant topics, and appropriate sites. NIDRR Centers have the critical mass of expertise and knowledge to provide: (1) Advanced, experiential training for researchers; (2) Classroom training for researchers and clinicians, at undergraduate and graduate levels; (3) Short-term training to teach scientists new methodologies; (4) In-service training for rehabilitation practitioners; (5) Training for consumers, their families, and representatives in implications and applications of new research-based knowledge; (6) Community-based training in Disability Studies and related areas, particularly in those centers with a strong focus on independent living, community integration, and policy issues; (7) Education and training in disability professions and in disability research for individuals with disabilities and for minority individuals; and (8) Training of rehabilitation educators and educators in a range of related disciplines. Advanced Rehabilitation Research Training Grants ARRTs will provide advanced research training that integrates disciplines; teaches research methodology in the environmental, or new paradigm, context; and promotes capacity for Disability Studies. These training programs must operate in interdisciplinary environments and provide training in rigorous scientific methods. Mary Switzer Fellowships These fellowships will augment scholarly knowledge in the field and function in an integrative capacity to define new frontiers of disability and rehabilitation research. NIDRR plans to provide more opportunities for interaction among the fellow and for exposure to established researchers and policymakers. New Scholars Program This program will recruit undergraduates with disabilities to work in NIDRR-funded centers and projects to expose them to disability and rehabilitation research issues, while at the same time providing work experience and income. This program, operated in affiliation with the Dole Foundation, is an innovative private/public partnership aimed at generating interest in research careers for persons with disabilities. Minority Development Program This program has focused on Historically Black Colleges and Universities and institutions serving primarily Hispanic, Asian, and American Indian students. NIDRR will evaluate this program to determine the extent to which it is achieving the objectives of Section 21 of the Rehabilitation Act, and to implement necessary strategies to enhance outcomes. Meanwhile, NIDRR is implementing new strategies on capacity- building among minority researchers focusing on collaboration, exchange of expertise, and advanced training. New Technologies for Training Educators, students, clinicians, scholars, and consumers are turning more frequently to the use of new media and telecommunications technology for conveying information and imparting skills. NIDRR respects the efficiencies and impacts that can be achieved through distance learning and web-based education. As a research institute, NIDRR also will undertake evaluations of the effectiveness of these techniques for various types of trainee populations, subject matter, and objectives. Chapter 10. Enhancing NIDRR's Management of Research Overview The research endeavor benefits from thoughtful management practices, specifically tailored to enhance relevance, importance, scientific quality, coordination, participation, [[Page 45780]] flexibility, productivity, and communication. This Plan already has addressed such elements of management improvement as using appropriate modes of participatory research, expanding dissemination and utilization of research, and enhancing capacity-building, all of which are part of NIDRR's programmatic efforts. This section of the Plan focuses on several additional management strategies that NIDRR will use to enhance its programs. Management Strategies NIDRR will employ a number of management strategies in support of its five-year agenda. Among these are emphasis on Centers of Excellence; enhanced coordination of Federal disability research; improved program evaluation and performance review; enhanced peer review process; increased collaboration, including interdisciplinary and cross-disciplinary research; creative funding mechanisms; international research; innovative strategies to manage intellectual property; expanded use of information technology; the reallocation of resources; and continuous participatory planning. Centers of Excellence NIDRR is committed to regenerating a network of Centers of Excellence in disability and rehabilitation research. The term ``Center of Excellence'' is used widely in research and medical fields, and may indicate either a judgment or an aspiration. NIDRR believes the disability constituency deserves Centers of Excellence and is applying standards and procedures to ensure that all research, dissemination, technical assistance, and model service centers will develop and adhere to standards for Centers of Excellence. In 1988, an independent evaluation of the RRTCs developed a set of standards for an RRTC Center of Excellence. These standards included items of research administration, balance of activities, synergy, accountability, coordinated programs, and capacity to improve rehabilitation. Recognizing that Centers of Excellence result from a partnership between NIDRR and its grantees, NIDRR has revisited the concept of Center of Excellence in its new Program Review Process, described later in this section. The Program Review Process has been invaluable as it led to the further identification and development of the criteria needed to set up and operate Centers of Excellence. Essential criteria for excellence are described below. Excellence in AdministrationSupport from an appropriate host institution. Appropriate process for research management and quality control. Ability to leverage resources and attract funding from other sources. Involvement of multiple disciplines. Outcomes-oriented evaluation. Protection of human subjects practices. Excellence in Scientific Research Expertise in and contribution to state-of-the-art research. Application of appropriate and rigorous scientific methods, whether quantitative or qualitative. Advancement of theory and knowledge base in the field. Expansion of research tools and methods. Professional recognition and publication. Outstanding investigators. Excellence in Relevance and Productivity Responsiveness to priority. Utility to consumers. Development of knowledge to improve rehabilitation. Systematic dissemination of knowledge in relevant and accessible formats. Involvement of individuals with disabilities in all phases of research process. Excellence in Capacity-Building Provisions of advanced research training for staff, including persons with disabilities and minorities. Provision of training to service providers on using results of research efforts. Provision of training to consumers in the uses of research. Infusion of disability knowledge into other research areas. NIDRR will continue to refine the concept of Centers of Excellence through ongoing dialogue with its Centers and other science organizations, and will adapt the concept for RERCs, model systems, and other major NIDRR programs. Enhancing Coordination of Federal Disability Research Congress recognized the importance of coordination among the range of agencies in the area of disability research by establishing, in Sec. 203 of the Rehabilitation Act of 1973, an Interagency Committee on Disability Research (ICDR), to be chaired by the Director of NIDRR. The statute lists the required membership in the ICDR--the 11 Federal agency senior officers--and charges the Committee to identify and seek to coordinate all Federal plans and projects in disability research, after receiving input from disabled individuals. The ICDR, which has 35 agencies as invited participants, has adopted by consensus a set of objectives and some specific operating procedures. The ICDR objectives are: To avoid duplication of efforts in disability research. To identify gaps in research. To identify opportunities for research collaboration. To develop mechanisms for and facilitation of disability research collaboration. To promote synergy through combined resources. To share information and research findings in order to build a more systematic and cohesive Federal effort; To comprise an identifiable entity that can disperse information to consumers, the private sector, policymakers, and the public about government-wide activities; and To assist in developing a responsive and relevant Federal infrastructure for disability research, by reporting to the Congress and the President, other agencies, and the public. Coordination of related activities in disparate public programs is an ongoing challenge. The scope of disability suggests that many diverse agencies will be involved in providing services and conducting research on issues of relevance. This is both inevitable and desirable. Disability is at least a peripheral concern for many agencies whose central missions lie elsewhere--for example, the Departments of the Interior, Justice, and Transportation; the Federal Communications Commission (FCC); and the Federal Aviation Administration (FAA). Disability is closer to the core, but still not the primary mission of agencies such as SSA, Health Care Financing Administration (HCFA), and Administration on Aging (AoA). This dispersion of resources and authorities may benefit disabled persons by ensuring that their concerns are recognized and dealt with by a wide array of ``mainstream'' agencies. It is also beneficial to diverse constituencies to have multiple avenues of access to research funding, policymaking, and services. Potential benefits of effective coordination of these diverse agencies include the opportunities to address a common problem with a critical mass of resources; avoid unintended and wasteful duplication; exchange [[Page 45781]] information in a system that increases all parties' awareness of issues; support complementary and synergistic research; leverage resources or provide joint funding of research; and develop a level of informed policymaking and leadership for the field. The ICDR can play several roles in its work of coordinating activities in disability research. The ICDR can educate Federal agencies and others about disability issues; take the lead in modeling accessibility; advance important concepts such as universal design or the new paradigm of disability; and promote achievement of the goals of the ADA. The ICDR focuses efforts on gathering information about disability research and making it available to a wide range of interested agencies. Issues that concern the missions of many agencies are the prime targets for the ICDR to address in building collaborations and cooperation. Disability statistics and building capacity in disability research are examples of two issues to be addressed by the ICDR in the next five years. All ICDR agencies and other constituents need disability statistics in their planning, policymaking, resource allocation, and progress evaluations. Most of these agencies also are charged with the collection of statistics about disability or, at least, the collection of program data about disabled participants. The ICDR will focus on improving the relevance of data collection efforts to the new paradigm of disability, the emerging universe of disability, the goals of the ADA, and NIDRR's goals of increased independence, productivity, and inclusion. Similarly, each agency that supports disability research has a stake in ensuring the existence of a cadre of highly qualified researchers to investigate issues related to medical and vocational rehabilitation interventions, health care, societal supports, employment, accessible environments and technology, and civil rights. The investment of Federal dollars in training at all levels can be leveraged through cooperative strategic planning and coordinated program implementation, such as shared funding support of various project components. The ICDR has adopted strategies that will support individual agencies in achieving their goals. The first major strategy is to maintain effective subcommittees in critical areas. The second strategy is to increase the flow of information to all participating agencies. The third strategy is to develop collaborative research and training agendas. The ICDR has three subcommittees--Medical Rehabilitation [co- chaired with the Centers for Disease Control and Prevention (CDC) and NCMRR], Assistive Technology [co-chaired with the National Science Foundation (NSF)], and the long-standing Interagency Committee on Disability Statistics [co-chaired with the National Center on Health Statistics (NCHS)]. Each ICDR subcommittee plans and directs the development of an informational database of Federal (and other) research in the pertinent area. This may take the form of a compendium of projects or products or an electronic database that can be updated and accessed. For example, the Subcommittee on Rehabilitation Engineering and Assistive Technology sponsored the preparation of the Compendium of Federal Technology that Benefits Persons with Disabilities (1998). This compendium contains abstracts of research projects, other technology activities, and technology transfer activities of member agencies, and is available on the World Wide Web. Participation by ICDR Committee and subcommittee members in critical activities of other agencies is a major step in increasing awareness and cross-fertilizing work in the field. NIDRR has invited many representatives of the other agencies to participate in peer review panels, long-range planning, priority development, and its new process of program reviews that assess the work of NIDRR Centers. Jointly developed priorities and shared funding of projects have resulted from these processes. For the future, the ICDR will continue to meet quarterly, hold annual public hearings, provide administrative support for the three subcommittees, and provide an annual report to the President and the Congress. Program Evaluation and Performance Review In the past year, NIDRR has begun a process of intensive review for all RRTCs and RERCs during their funding cycles, and has developed a set of measures in accordance with the Government Performance and Review Act (GPRA) that it will implement to link program outcomes to agency performance standards. The program reviews take the form of reverse site visits in which Center personnel present research and training outcomes in sessions attended by NIDRR senior staff, staff of related Federal agencies, other researchers, consumers with disabilities, service providers, private sector representatives such as employers or manufacturers, and information brokers. These sessions allow for intensive examination, discussion, feedback, and assessment of each center using the Center of Excellence framework. In the future, program reviews will be expanded to other NIDRR programs (Model Systems, Disability Business and Technical Assistance Centers (DBTACs), and other dissemination centers) and will occur at least twice in a Center's performance period. There will be a Formative Review, early in the funding cycle, to examine methodology, create linkages to other entities, and develop specific performance measures and outcomes data requirements. A Summative Review session will be completed near the end of the grant cycle to assess outcomes and implications for future research. Program Review reports will provide input into assessing how well NIDRR is meeting the objectives and indicators set forth in its GPRA plan. NIDRR, like other Federal research agencies, will measure research performance and outcomes in the GPRA context. NIDRR has participated in the Research Roundtable, a cooperative effort of many federal research agencies to develop a coherent strategy for GPRA in research. NIDRR has developed a two-part performance measurement strategy, based on approaches discussed at the Roundtable, that includes both metric measures of productivity (e.g., number of refereed publications, citations in the literature, persons trained) and qualitative narratives that evaluate the scientific excellence, relevance, and dissemination of project or center activities. Research is a lengthy and sometimes serendipitous process; it is impossible to predict what even the most productive research will achieve by any given time. Furthermore, a failed hypothesis can be a project success. At the same time, NIDRR and other Federal research agencies share the concerns of Congress and the Administration that high standards of program performance and accountability for outcomes must be applied to agency- sponsored activities. Enhancing Peer Review NIDRR is implementing a project to redesign and improve important features of its peer review to provide more continuity of evaluation and improved feedback to applicants. These improvements will include standing panels for some competitions, more useful feedback to applicants, more training for members of peer review panels, a process to identify and handle repeat applications, clarifications of funding criteria and processes, and [[Page 45782]] regularized annual competition schedules. Creative Funding Mechanisms Four goals of NIDRR's management reform are to stimulate more collaborative research, to support some significant longitudinal research without diminishing competition in the program, to increase the frequency of multidisciplinary research, and to provide grantees with the flexibility to make rapid responses to new scientific and technological developments while maintaining program accountability. Periodic competition ensures the vitality of the program and its openness to new ideas. NIDRR will develop marketing strategies and capacity-building that will expand participation in disability research by leading scientists and innovators, individuals with disabilities, and those from diverse backgrounds. At present, collaborative research is implemented in the form of shared protocols and common databases, or in the more diffuse form of subcontracting for discrete parts of a whole. While subcontracting for outside expertise is often convenient, closer working partnerships are to be encouraged. Grantees find current mechanisms for participating in the collection of common data to be administratively and fiscally cumbersome. NIDRR will explore other strategies to promote collaboration, including earmarking funds specifically for collaborative research projects, authorizing grantees to reserve a portion of their centers' funds to support collaborative efforts, and creating coordinating centers in some subject areas. Disability is a complex, dynamic, and long-term phenomenon. Understanding the course of disablement, rehabilitation, and adaptation frequently requires collection of data over extended time periods. Within the general 60-month limit on grant periods, NIDRR will look for ways to support longitudinal studies in those instances of critical importance, either by creating administrative exceptions or by creating managerial consortia that can transfer the research effort; this latter effort might be achieved through the contract mechanism in which the Government has clear ownership of all products. While single discipline research is important, implementing the new paradigm of disability in research will demand the simultaneous and synergistic attention of many disciplines. In most fields, there is little academic or practical incentive for interdisciplinary research. Indeed, interdisciplinary research tends to become ``non-disciplinary'' (i.e., non-scientific) research if the underlying theories, assumptions, techniques, and analytical methods are not clearly specified and if the relation to the theoretical and methodological base of each involved discipline is not clearly stated. NIDRR will promote interdisciplinary research, if appropriate, through program requirements, selection criteria, and new training approaches. Knowledge develops rapidly in some fields and certain breakthroughs in medicine or technology, or major shifts in public policy, present opportunities for improvements for persons with disabilities if they are addressed immediately. Conversely, some emerging technologies may present barriers to persons with disabilities if they are not addressed rapidly. Thus, NIDRR is developing a systematic process for grantees to direct resources to capitalize on these unforeseen opportunities while maintaining accountability and productivity. International Research The Rehabilitation Act of 1973, as amended, (Sec 204 (b)(5)), states that the Director of NIDRR is authorized to: ``Conduct * * * a program for international rehabilitation research, demonstration, and training for the purpose of developing new knowledge and methods in the rehabilitation of individuals with disabilities in the United States, cooperating with and assisting in developing and sharing information found useful in other nations in the rehabilitation of the individuals with disabilities and initiating a program to exchange experts and technical assistance in the field of rehabilitation of individuals with disbilities with other nations as a means of increasing the level of skill of rehabilitation personnel.'' NIDRR's international activities are linked to: (1) improving the skills of rehabilitation personnel in America through international data, (2) Generating international research, which provides needed data, (3) Seeking international collaborations for the development of assistive technology, and (4) strengthening disability leadership globally. NIDRR has carried out its international authority through a variety of activities including research projects; exchanges and training of scientists, engineers, and other appropriate personnel; exchanges of scientific and technological information; conferences; support of databases; and other avenues. Examples of these activities include the following: (a) Collaborative research centers in India through the United States-India Fund, (b) information exchange through support for the World Wide Web Initiative with the National Science Foundation, (c) exchange of disability and rehabilitation experts in issues affecting women with disabilities, and (d) Policy studies and forums in areas such as international standards, technology, and special education for the United Nations, European Union, and Organization for Economic and Cooperative Development. The emergence of a true global economy dictates a new role in international activities to promote the well-being of persons with disabilities through access to jobs, better technology, and social supports. In addition, the U.S. disability research community desires to share the new disability paradigm internationally. To meet these concerns, NIDRR adopts the following priorities: International Standards. NIDRR will participate in the development of international standards in assistive technology that will be recognized and debated by regulatory agencies or consortia in all parts of the world. The adoption of those standards will greatly facilitate research exchange and assist consumers in finding appropriate, high quality products. Joint Research. There are many instances in which great benefits of synergy and complementarity between United States researchers and researchers in other nations could be generated by collaborative research and development efforts particularly in assistive technology, universal design, employment, independent living, wellness, and Participatory Action Research (PAR). NIDRR will seek international research partners to share expenses and expertise in research projects of mutual benefit. Conferencing/Exchange. Effective exchange of information and expertise is one of the greatest benefits of an international effort. NIDRR will undertake an integrated spectrum of activities to promote the new paradigm in concept and in methodology. International conferences, exchange scholars, and capacity building will emphasize personal contact, hands-on participation in data and research methodology, and practical applications of research results. Database Expansion. Contemporary technology permits more effective use of the many databases in the international arena that can provide help and resources to both researchers and consumers in the United States. NIDRR desires to be a catalyst in the linking of relevant databases globally so that the universe of information is available to [[Page 45783]] any researcher or consumer anywhere on the planet. NIDRR-sponsored information systems will be the ``gateway'' to international information gathering. Access to Information Technology and Telecommunications. The growing significance of telecommunications and information technology on a global basis has the potential to assist individuals with disabilities in interacting with their environments through employment, communications, and participation in the community. NIDRR will continue efforts to ensure the availability and accessibility of worldwide information technology to persons with disabilities. Mangaement of Intellectual Property New technologies, especially electronic information media, are giving rise to even more disputes about the ownership of knowledge complicated by Government financing of the development of instruments, databases, or devices. The general principle of grantee right to patent or copyright products, with Government right of free use, can be complex to administer. NIDRR will work cooperatively with other Federal agencies and grantees to discuss intellectual property guidelines that protect taxpayers' interests in having broad access to knowledge developed with public funds, and yet protect the intellectual property rights of scientists and inventors. Enhanced Use of Information Technology NIDRR plans to continue aggressive use of information technology to facilitate many aspects of its future activities, including increased sharing of research results and data, and encouraging more collaborative projects, greater use of common protocols and databases, and more efficient use of research resources. To increase communication with and among grantees, NIDRR will use a variety of communication strategies, including website information on NIDRR and its grantees. NIDRR's accessible website, with hypertext links to grantee websites, already provides considerable information about NIDRR grantees. In addition, NIDRR is developing a Program Database that will provide NIDRR and others with up-to-date information about NIDRR grantees and research findings. This program database will allow analyses of program characteristics and more efficient management and evaluation of individual projects and the total NIDRR program. NIDRR also will create linkages for sharing information among centers and projects. These will include bulletin boards, list-servs, and written newsletters. Additionally, NIDRR will continue to sponsor effective use of teleconferencing, video-conferencing, and emerging telecommunications methods. Allocation of Resources Effective allocation of resources is required to realize NIDRR goals in all areas. In particular, NIDRR intends to allocate increased resources in four areas related to the objectives of the five-year Plan, including: 1. Support of Centers of Excellence concentrating on large-scale problems; 2. Support of investigator-initiated research projects that use the best ideas emerging from the field; 3. Expansion of capacity-building activities, including training researchers with disabilities; and 4. Development of funding opportunities for collaborative projects. Realigning NIDRR's RRTC program away from many small centers with limited scope of work and toward more substantial centers that are increasingly cross-disability, cross-disciplinary, interdisciplinary, and have the capacity and flexibility to address emerging problems is a complex process that will be accomplished over time. The changes inherent in this process will be made by redirecting some existing resources while protecting valuable research capacity. To continue the success of NIDRR's field initiated research project program; NIDRR is increasing the number and size of the awards to ensure that excellent researchers continue to pursue this funding opportunity. NIDRR also plans to review and expand its training activities to foster the continued development of excellent researchers, especially individuals with disabilities, for the disability research endeavor. In addition, NIDRR plans to develop a Training Database to identify and track persons trained in NIDRR's programs and to track their participation in the disability and rehabilitation fields. The Training Database will help facilitate development of a Trainee Network that will include a website; a list-serv for persons who participate in NIDRR training programs; and a directory of current and past Trainees, Scholars, and Fellows. This network will contribute to more opportunities for in-person presentations and interactions among NIDRR training recipients. Continuous Participatory Planning NIDRR will formalize an ongoing process for reviewing and revising the Long-Range Plan on a periodic basis, and for ensuring that meaningful annual priorities are crafted based on the Plan. This process will involve: Establishing agenda-setting work groups in each of the outcome areas designated in the Plan. These work groups will meet periodically and will be responsible for substantive recommendations, in their respective areas, for both annual priorities and new five-year goals. Holding at least one public hearing each year. This hearing will focus on one substantive area and will evaluate current work and identify future needs in that area. These hearings will be held in different parts of the country, and will take advantage, where possible, of video conferencing or satellite broadcasting techniques to allow the hearings to be more geographically inclusive. NIDRR will seek cosponsors for these hearings from organizations active in the particular substantive areas; Convening ad hoc focus groups in subject areas that need further exploration prior to implementation in annual priorities or other activities; Using a combination of internal and external participants to develop a combined Strategic/Program Plan, and beginning that process two years in advance of the expected products; and Evaluating NIDRR performance under GPRA, in part on the extent to which annual priorities are derived from and coherent with the Plan. The progress of NIDRR's continuous planning effort and the results of implementation of the Plan will be assessed and reported in an annual report to the Congress. References Adams, P.F. & Marano, M.A. (1995). National Center for Health Statistics, Current Estimates from the National Health Interview Survey, United States, 1994 Vital and Health Statistics: Series 10, No. 193. DHHS Pub. No. (PHS) 96-1521. 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