The Long-Range Plan of the National Institute on Disability and Rehabilitation Research (NIDRR) presents a five-year Agenda that will advance the vital work being done in applied rehabilitation research. NIDRR intends for this plan to balance the competing demands of consumer relevance and scientific rigor, to present an agenda that is scientifically sound and accountable, and as a result, to contribute to the refinement of the nation’s science and technology policy.
Two key elements on our agenda are designed to move the field forward-the new paradigm of disability and the emerging universe of disability.
The new paradigm is a conceptual foundation for organizing and interpreting the phenomenon of disability. The paradigm provides a way to apply scientific research to the goals and concerns of people with disabilities. This disability paradigm, which will undergird NIDRR’s future research strategy, maintains that disability is a product of an interaction between individual characteristics (e.g., conditions or impairments, functional status, or personal and socioeconomic qualities) and the characteristics of the natural, built, cultural, and social environments.
The emerging universe is identified with new disabling conditions; new causes for impairment; differential distribution within the population; increased frequency of some impairments, including those associated with aging; and new consequences of disability, particularly related to social-environmental factors, life-span issues, and projected demands for services and supports.
Introduction
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. These breakthroughs not only provide the potential for longer and more fulfilling lives for individuals with disabilities, they also reinforce the second major development—successful independent living and civil rights advocacy by disabled people.
This intersection of scientific progress and the empowerment of disabled people has increased momentum for disability research. These developments highlight the importance of integrating disability research into the mainstream of U.S. science and technology policy and into the nation’s economic and health care policies now more than ever.
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 society to accommodate them. 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 individuals with disabilities with opportunities to improve their daily lives.
The mission of the National Institute on Disability and Rehabilitation Research (NIDRR) is to generate, disseminate, and promote the full use of new information that will (1) improve substantially the options for disabled individuals to perform regular activities in the community and (2) expand society’s capacity to provide full opportunities and appropriate support 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 (VR) program. By establishing NIDRR1 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, leads to the creation of rational public policy, and meets the needs of service providers for information on validated and improved practices.
In founding 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 inclusion and social integration, employment, and independent living of individuals of all ages with disabilities. Particular emphasis was placed on improving the coordination and effectiveness of services authorized under the act.
Other mandated activities include the widespread dissemination of research-generated knowledge and practical information to rehabilitation professionals, individuals with disabilities, researchers, and others; the promotion of the transfer of rehabilitation technology; and an increase in opportunities for researchers who have disabilities or are members of minority groups.
NIDRR is ideally positioned to facilitate the transfer of new knowledge into practice as it shares administrative locations 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). Also, NIDRR’s linkage to the greater science community through its leadership of the Interagency Committee on Disability Research (ICDR) provides an opportunity to transfer advances in basic research to 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 focusing on consumer goals and scientific initiatives. The plan has several distinct purposes:
- to set broad general directions that will guide NIDRR’s policies and use of resources as the field of disability enters the 21st century;
- to establish objectives for research and dissemination that will improve the lives of individuals with disabilities and enable annual research priorities to be formulated from it;
- to describe a system for carrying out the plan in terms of annual priorities, evaluations of the plan’s implementation, and updates of the plan as necessary; and
- to place new emphasis on the management and administration of the research endeavor.
The plan was developed in collaboration with a distinguished group of NIDRR constituents—individuals with disabilities and their family members and advocates, service providers, researchers, educators, administrators, and policy-makers.
The policy-makers included the Commissioner of the Rehabilitation Services Administration, members of the National Council on Disability (NCD), and representatives from the Department of Health and Human Services (DHHS). The plan draws upon public hearings and planning activities conducted under the prior NIDRR administration (William H. Graves, director) and on papers prepared for the plan by more than a dozen authors. The plan addresses a range of diverse needs, including:
- 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;
- the needs of rehabilitation service providers for information on new techniques and technologies that will enable them to help rehabilitate individuals with disabilities;
- the needs of researchers to advance the capabilities of science as well as the body of scientific knowledge; and
- the needs of society and its leadership for strategies that will enable people with disabilities to contribute to society; and
- the need to transfer findings from basic to applied research.
Footnotes
1. Established as the National Institute of Handicapped Research, the institute’s name was changed to the National Institute on Disability and Rehabilitation Research by the 1986 amendments to the Rehabilitation Act.
2. As a component of OSERS within the Department of Education, NIDRR is guided by the Department’s strategic plan, the OSERS’ 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 five-year program plan from NIDRR—one that identifies research needs and 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.
Accomplishments
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. More advances occur every day.
Today, it is commonplace to see people in wheelchairs traveling in airplanes and private vehicles, people who are blind using computers, and people who are deaf attending the theater. Individuals who have significant disabilities have been and 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 are paralyzed from a spinal cord injury has risen continuously over the past 25 years (DeVivo & Stover 1995). One reason is that the concerted efforts of U.S. researchers, most of whom received NIDRR support, have greatly reduced the number of severe urinary tract infections and related complications, thereby lowering renal failure as a cause of death from first to 12th place over the past two decades. Decubitus ulcers also have been a serious problem for people living with a spinal cord injury, multiple sclerosis, the aftereffects of a stroke, and other immobilizing conditions. Decubitus ulcers are destructive and costly to treat, resulting in lost workdays, high medical expenses, hospitalizations, and additional complications. Medical researchers and rehabilitation engineers have developed preventive measures, including seating, cushioning, and positioning devices; behavioral protocols; and improved treatment methods. These efforts have greatly reduced the 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; these new materials render these technologies comfortable and serviceable, and allow their users to accomplish many important personal goals. For example, wheelchair racers using the newest sports wheelchairs can complete races longer than 800 meters faster than Olympic runners. In the Paralympics, runners using prosthetic legs have repeatedly demonstrated impressive speeds. In everyday life, people who use wheelchairs have benefited from lightweight, transportable chairs as well as powered chairs, which 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 people with disabilities. During this period, technology has greatly enhanced the accommodation of disabilities, self-awareness has increased the expectations of and for people with disabilities, and advocacy has resulted in the recognition of the rights of people with disabilities to societal access and reasonable accommodations.
NIDRR-supported research also has facilitated the inclusion of people with mental retardation and those with emotional disabilities in communities, workplaces, and lifelong learning experiences. In 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 the employment of individuals with cognitive and emotional disabilities and to support families of the disabled in their important role.
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 people with a very broad range of function. For example, after years of research, all television sets are now 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 changing the disability paradigm and expanding the word disability to include environmental 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 disabilities among the nation’s aging population further challenge the disability research field. The research field must develop ways to measure and address the impact of environmental factors on the phenomenon of disability.
NIDRR has led the way in the research for a new conceptual foundation to organize and interpret the phenomenon of disability—a new paradigm of disability.
This paradigm is a construction of both the disability and scientific communities and provides a mechanism to apply 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 (1962) viewed a paradigm as a time-limited model for framing problems and solutions within any discipline. The term paradigm is used above in the quasi-popular sense it has acquired over the last 40 years––to indicate a basic consensus 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 the characteristics of the individual (e.g., conditions or impairments, functional status, or personal and social qualities) and the characteristics of the natural, built, cultural, and social environments. The construct of disability is located on a continuum from enablement to disablement. Personal as well as environmental characteristics 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 accessible and inaccessible, culturally inclusive and exclusive, accommodating and unaccommodating, and supportive and unsupportive. For example, on a societal level, institutions and the built environment have been designed for a limited segment of the population. Researchers should explore new ways of measuring and assessing disability in context, taking into account the effects 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 by comparing it with the paradigm it replaces and by clarifying the importance the new 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 a deficit in an individual that prevents the individual from performing certain functions or activities. This underlying assumption about disability has 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 the 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, changes in the focus of research, and changes in the way research is managed and conducted.
Issues Regarding Definition
One of the fundamental consequences of the new paradigm is the need to change definitions. The definition of disability is critical to building a conceptual model that identifies relevant components of disablement and their relationships to one another, and the dynamic mechanisms by which they change.
Typically, definitions of disability have varied, depending on their intended use. From a research perspective, the definitions used to count and describe disabled people have been important, while from the policy perspective, these definitions are critical to establishing eligibility for benefits and services.
The majority of federal definitions of disability––including those in the Rehabilitation Act, the ADA, and the National Health Interview Survey (NHIS)––originated 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, connects the disability with the individual. This is understandable not only because changing a paradigm is complex and takes a long time, but also because there has been no system to define, classify, and measure the environmental components of disability or a model to describe and quantify the interaction of environmental and individual variables.
This need to change definitions must be addressed by activities, such as the attempt to revise the International Classification of Impairments, Disabilities, and Handicaps (World Health Organization 1980), to better define and measure the factors external to an individual that contribute to his or her disability.
[Text version]
Table 1. - Contrast of Paradigms
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"Old" Paradigms
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"New" Paradigms
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| Definition of Disability: |
An individual is limited by his/her impairment or condition. |
An individual with an impairment requires an accommodation to carry out life activities. |
| Strategy to Address Disability: |
Fix the individual, correct the deficit. |
Remove barriers, create access through accommodation and universal design, and promote wellness and health. |
| Method to Address Disability: |
Provision of medical, vocational, or psychological rehabilitation services. |
Provision of supports, (e.g., assistive technology, personal assistance services, job coach). |
| Source of Intervention: |
Professionals, clinicians, and other rehabilitation service providers. |
Peers, mainstream service providers, consumer information services. |
| Entitlements: |
Eligibility for benefits based on severity of impairment. |
Eligibility for accommodations seen as a civil right. |
| Role of Disabled Individual: |
Object of intervention, patient, beneficiary, research subject. |
Consumer or customer, empowered peer, research participant, decision-maker. |
| Domain of Disability: |
A medical "problem" |
A socio-environmental issue involving accessibility, accommodations, and equity. |
Note: This table is adapted from materials prepared for this Long-Range Plan by Gerben DeJong and Bonnie O'Day from the National Rehabilitation Hospital Research Center in Washington, D.C.
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 the 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. New measures must enable researchers to predict and understand changes in the prevalence and distribution of disabilities that illustrate the link between underlying social and environmental conditions—poverty, race, culture, isolation, and the age continuum—and the emergence of new causes of disability, new disability syndromes, and the differential distribution of disabilities among various populations in our society.
Concern is focused increasingly on vulnerable populations, as researchers find more evidence that disability and the risk of disability are disproportionately concentrated in specific populations: those in poverty, those who lack access to state-of-the-art preventions or interventions, and those who are exposed to additional external or lifestyle risk factors. There are new impairments, exacerbated impairments, and 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, prenatal and other health care, access to preventive care, and health information. These individuals also experience more incidents of inter-personal 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 to be discussed in "Chapter 2."
New Focus of Research Inquiries
The new paradigm adds or increases the relative emphasis on certain areas of inquiry. Research must develop new methods to focus on the interface between people 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 people 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 the prevention and alleviation of secondary disabilities, co-existing conditions, and health maintenance over the lifespan. Research must focus on the development and evaluation of environmental options in the built environment and the commun-ications environment. In developing these options, researchers will incorporate universal design and modular design principles and the use of assistive technology.
Research will lead to a better understanding of the context and trends in our society that affect the total environment in which people with disabilities live and in which disability will be manifested. These influences 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.
Researchers must understand 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, the 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 people. Their frequent incon-sistencies, contradictions, and oversights can inhibit the attainment of personal and societal goals for people with disabilities.
Research Management
The new paradigm requires new models for managing the research enterprise––including 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. NIDRR will expand training in disability and rehabilitation research to include disciplines such as architecture and business. There will be new venues for conducting research and a need for validated methodologies to conduct research on dynamic person-environment interactions, often under 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 and services will be subject to assessment.
Moreover, interdisciplinary and collaborative research is important for explicating the multidimensional qualities of disability. Only through research coordination and collaboration can basic research findings 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 said, "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 types of disability and rehabilitation research, and is committed to making research an inclusive, collaborative, and coordinated undertaking.
Organization of the Long-Range Plan
This introductory chapter has set the framework for understanding NIDRR’s mission and approach. After the next chapter, "Dimensions of Disability," "Section Two" will discuss an agenda for research that will provide 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 the capacity of the field through training researchers and users of research. Section Three will focus on these activities.
NIDRR intends this five-year plan to balance the competing demands of consumer relevance and scientific rigor. To this end, the research agenda is designed to be responsive, scientifically sound, and accountable. Ultimately, NIDRR aims to help refine the nation’s science and technology.
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