[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__Nangle@ed.gov
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
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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.
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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
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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
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``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.
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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 Administration
Support 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.
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Center for Health Statistics.
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[FR Doc. 99-21537 Filed 8-19-99; 8:45 am]
BILLING CODE 4000-01-M
