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
Late Professor of Sociology,
Brandeis University
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 earlier in this Plan. Disability statistics, disability outcomes measures, disability studies, rehabilitation science, and disability policy research all are 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 achieving its goal of helping people with disabilities attain maximal independence. Priorities for each research area are discussed in this chapter.
Disability Statistics
NIDRR has several purposes in advancing work in disability statistics. First, NIDRR wants to make the most of the data currently collected in reliable national data sets. Second, NIDRR encourages the creation and analysis of research databases, including meta-analyses focused on problems such as employment rates or the 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 people, are critical to 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 contribute 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. NIDRR 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:
- the elucidation of salient issues or the stimulation of further research questions through meta-analyses;
- development and evaluation of state-of-the-art measurement tools that will assess the complex interactions between impairment and environment;
- development and evaluation of strategies to ensure that disability statistics accurately capture information on underrepresented minorities and emergent disabilities;
- development and evaluation of methods for ensuring the dissemination of disability statistical data to diverse audiences; and
- development and testing of accessible survey instruments and protocols.
Rehabilitation Outcomes Measures
The importance 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 outcomes 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 questioned 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 outcomes 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 implemen-tation of a new paradigm of disability. Currently, our ability to describe the interaction of an individual and the 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 the achievement of these goals. As indicated earlier, some measures of community integration are already in use. These measures, developed for specific populations, are examples of tools that might be refined to monitor and compare progress toward the 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:
- refinement of measures of medical rehabilitation effectiveness to incorporate environmental factors in the assessment of function;
- development and evaluation of measures of independence, community integration, and quality of life, especially measures that incorporate the perspectives of people with disabilities; and
- development of measures for use in outpatient and community-based settings, ensuring the applicability of these measures to all disability populations.
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. This approach emphasizes the perspectives of people 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 lenses, including economics, political science, religion, law, history, architecture, urban planning, literature...” (Brandt & Pope 1997). NIDRR believes that disability studies is a natural complement to the new paradigm, emphasizing the study of the complex relationship between various aspects of disability and society, and that it 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.
An important purpose in the development of any area of study 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 has influenced the development and legitimation of studies of the sociology of gender. 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 policy-makers 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 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, especially its principles of inclusion, integration, and independence, NIDRR believes it is essential to reflect the perspectives of individuals with disabilities in studies of disability. NIDRR also believes it is important 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:
- the development of a theoretical framework for conducting disability studies and strategies for teaching disability studies at various academic and non-academic levels;
- the compilation of information about the many forms of extant disability studies, including academic levels, disciplines involved, course content, resources, and students; and
- the 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. The goals of Rehabilitation Science 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 and environmental limitations to functional independence and participation. These factors include impairment, functional limitation, and disability. In addition, rehabilitation science 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 used to develop innovative and improved techniques of functional restoration.
Research Priorities for Rehabilitation Science
Specific research priorities for rehabilitation science include:
- further elucidation of the enabling-disabling process; and
- exploration of the development and application of a theoretical framework for rehabilitation science.
Disability Policy
Public disability policy broadly defines the participation of disabled people in the general benefits that 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 context for disability and rehabilitation research reflects interlinking service delivery systems in which changes in one system often have a 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 largely has been ignored in national science and technology policy. Thus, underlying conflicts may exist and result in unintended disincentives to work and to attain independence.
At the systems and societal levels, the potential impact of policy initiatives on people with disabilities may be even more significant, yet it is less likely to be recognized. The impact of telecommunications, the built environment, health care, and labor market policies has 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 decisions on people with disabilities.
Specific research priorities include but are not limited to:
- 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;
- evaluation of the impact of changing social policies toward parenting, personal assistance services, tax deductions, and education, among other factors, on the lives of people with disabilities;
- analysis of the impact of welfare-to-work initiatives on the well-being of people with disabilities or their families;
- evaluation of the impact of macroeconomic issues, such as the changing labor force requirements, on employment opportunities for people with disabilities;
- 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 people;
- 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;
- investigation of the impact of national telecommunications and information technology policy on the access of people with disabilities to related education, work, and other opportunities; and
- examination of the impact of national housing policy and building codes on the living environments and housing choices of people with disabilities and their families.
Related disability research emphasizes knowledge areas that are crosscutting and essential to the support and refinement of disability research in general. The common theme linking disability statistics, outcomes measures, disability studies, rehabilitation science, and disability policy is that they all provide essential frameworks and building blocks that enable the disability research enterprise to thrive and to address important issues in meaningful ways.
  Chapter 8: Knowledge Dissemination and Utilization
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