[Federal Register: August 20, 1999 (Volume 64, Number 161)]
[Notices]
[Page 45743-45784]
From the Federal Register Online via GPO Access [wais.access.gpo.gov]
[DOCID:fr20au99-147]
[[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
[[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
[[Page 45745]]
disability-specific, while other sections or topics are cross-
disability or address multiple disabilities. The commenter asked for a
rationale for this variation.
Discussion: NIDRR believes that, in some cases, research is best
organized around a single disability. Examples include research on
interventions specific to certain conditions or their complications.
Medical research or the development of technologies to replace
functions such as mobility or vision, for example, may require
equipment or expertise that is organized around certain body systems or
types of functional loss. Other research may require access to
substantial populations of individuals with similar impairments.
However, research on general issues of participation, service delivery,
and employment opportunities may consider individuals from many
disability populations. NIDRR approaches these topics as
comprehensively as possible to avoid fragmenting beneficiary
populations. In some cases, specific disabilities are referenced as
examples only.
Changes: None.
Comment: One commenter suggested that NIDRR should define parents
of children with disabilities as consumers and ensure that research
will be conducted on the population over a longer time period. A second
commenter urged that research on families be specified in all areas of
the Plan, particularly employment, transition, and access to services.
Discussion: the Secretary agrees that research on families of
disabled children that provides useful knowledge to support these
families. In fiscal year 1998, NIDRR funded a Rehabilitation Research
and Training Center (RRTC) on families of children with disabilities,
with a funding period of 60 months. In 1999, NIDRR will fund an RRTC to
continue research and training on families of children with serious
behavior disorders. Many other centers and projects also address in
part issues related to families of disabled children. One center
provides support for disabled adults in their family role. The role of
families in rehabilitation is widely acknowledged. NIDRR believes this
is clear indication of its commitment to research on families
throughout the period of this Plan.
Changes: None.
Comment: Several commenters noted that the Plan did not address
certain areas of NIDRR activity, including international activities,
interagency collaboration, peer review, and evaluation activities.
Discussion: NIDRR regards these activities as integral parts of its
Plan for the next five years.
Changes: A final chapter entitled Enhancing NIDRR's Management of
Research has been added to the Plan. This chapter includes
international research, the Interagency Committee on Disability
Research (ICDR), improvements to peer review, and NIDRR's program
evaluation and continuous participatory planning activities.
Comment: Two commenters suggested that it would be important to
estimate the costs of implementing the Plan.
Discussion: NIDRR believes this would be a useful but complex
activity. NIDRR recognizes not only the difficulty of estimating future
costs, but also that other research entities will play a role in
accomplishing some of the objectives outlined in the Plan. NIDRR also
is mindful of the nature of the annual federal budget setting process
and believes it would be inappropriate for NIDRR to preempt that
process.
Changes: None.
Introduction and Background
Comment: Several commenters suggested that the proposed Plan does
not stress sufficiently the significance of NIDRR research to persons
with cognitive disabilities, particularly those with mental
retardation, and specifically recommended that examples of improvements
through research for this population be included.
Discussion: NIDRR agrees that important improvements in the quality
of life and integration into the community for individuals experiencing
cognitive impairment have been achieved through research, including
research sponsored by NIDRR.
Changes: The Plan has been amended to reference research-based
improvements for this population.
Comment: One commenter stated that the description of
Rehabilitation Research and Training Centers (RRTCs) appeared to
emphasize characteristics typical of academic institutions that might
indicate a bias in favor of funding RRTCs at academic institutions.
Discussion: The statute clearly spells out the qualifications and
eligibility criteria for an RRTC. In funding RRTCs, NIDRR implements
the statute by funding RRTCs at organizations that meet the statutory
criteria and whose applications are highly rated by independent peer
review panels.
Changes: None.
Dimensions of Disability
Comment: Several commenters discussed the inadequacy of demographic
data related to individuals with disabilities, including deficiencies
in estimating the prevalence of low-incidence disabilities, or the
prevalence of disability in discrete ethnic sub-populations such as
Pacific Islanders or individual American Indian or Alaskan native
tribes. Two commenters suggested that NIDRR work toward the creation
and adoption of a minimum data set about disability that could be
included in all Federal surveys and data collection efforts. One urged
that NIDRR undertake surveys to create demographic databases on certain
minority populations.
Discussion: The Plan recognizes the inadequacy of existing national
databases about disability. NIDRR does not have a mission or resources
to undertake national or regional surveys to generate comprehensive
primary demographic data files. However, NIDRR believes that smaller
scale, intensive studies of the distribution of disability in discrete
populations such as racial or ethnic sub-populations is an appropriate
topic for exploration under field initiated projects. In addition,
NIDRR is aware of the need to incorporate appropriate questions about
disability into all relevant Federal data collection efforts and is
working with other Federal agencies to achieve this objective.
Changes: The new final chapter on NIDRR management initiatives
discusses the Interagency Committee on Disability Research (ICDR) as a
mechanism for working to improve Federal data collection efforts
regarding disability.
Comment: Several commenters noted that women with disabilities
constitute a population whose circumstances and needs are substantially
different from those of men with disabilities, and request that
disabled women be identified as a population for targeted study,
perhaps under the category of emergent disability populations.
Discussion: NIDRR supports research on problems that are unique to,
or more significant for, women with disabilities,including areas as
diverse as reproduction and sexuality, fibromyalgia, multiple
sclerosis, violence and abuse, and childcare. NIDRR will continue to
support research on specific conditions affecting women and girls with
disabilities.
Changes: The Plan has been amended to include specific reference to
women with disabilities under appropriate topics.
[[Page 45746]]
Comment: Two commenters urged that NIDRR specifically include
chronic fatigue syndrome and multiple chemical sensitivies in its
description of emerging disabilities.
Discussion: The discussion of emergent disabilities in the Plan was
intended to be illustrative of the concept of a changing disability
population, with new conditions or impairments emerging to create a new
or greater need for rehabilitation. The selection of specific
conditions to be addressed in this context will be made either, in the
case of field initiated projects, by applicants setting forth the need
for study and peer reviewers evaluating the proposals or, in the case
of directed research, through NIDRR's participatory priority
development process.
Changes: The discussion of emergent disabilities has been amended
to suggest that chronic fatigue as well as multiple chemical
sensitivity may be investigated as emergent disabilities.
Comment: One commenter stated that the Plan should include specific
references to the involvement of State Vocational Rehabilitation (VR)
agencies in setting annual research priorities.
Discussion: It is NIDRR's practice to involve a full spectrum of
relevant stakeholders in the formulation of the annual priorities. This
certainly includes State Vocational rehabilitation agencies as relevant
stakeholders.
Changes: The final section of the chapter on enhancing NIDRR
management, which has been added to the Plan, specifies a broad range
of constitutents to be involved in continuous participatory planning,
including State Vocational Rehabilitation Agencies.
Comment: Several commenters remarked on data excerpted from the
National Health Interview Survey, questioning whether the delineation
of only two ethnic groups indicated that only white and African-
American individuals were expected to benefit from the Plan.
Discussion: Within this chapter of the Plan, NIDRR has commented on
the inadequacy of national data sets to elucidate disability conditions
among a full range of ethnic groups. Table Three in the Plan was
intended merely to illustrate that there are differences along ethnic
lines, and at the same time it illustrates that the national data sets
are inadequate. NIDRR is committed, as is emphasized in the Plan, to
the exploration of the impact of ethnic background and associated
characteristics on disability.
Changes: None.
Comment: Several commenters remarked on the need for demographic
data useful to industry in estimating and identifying markets for
assistive technology and other products.
Discussion: NIDRR agrees that there is a dearth of reliable data on
disability for market research purposes. NIDRR's data centers are
frequently queried by private industry sources seeking to estimate
markets.
Changes: NIDRR has added a reference to the need for market related
data in this chapter.
Employment Outcomes
Comment: One letter of comment recommended that personal assistance
services be cited in all areas of the Plan in which they could be
relevant, such as the sections on employment, health, and technology.
Discussion: NIDRR recognizes the potential significance of personal
assistance services in employment and health maintenance, as well as in
independent living and community integration. However in the interest
of brevity, NIDRR has elected to discuss personal assistance services
in only one chapter, referring therein to the role of PAS in
employment, health maintenance and independent living.
Changes: None.
Comment: One commenter recommended that the improvement of the
State and Federal vocational rehabilitation program be an integral part
of NIDRR's research in employment trends and a target for the
dissemination of that research.
Discussion: The chapter on Employment Outcomes includes enhancement
of the State and Federal vocational rehabilitation program as a key
research objective. The chapter on knowledge dissemination refers to
the importance of developing partnerships with state vocational
rehabilitation agencies in order to tailor dissemination activities to
their specific needs.
Changes: None.
Comment: Several commenters suggested an emphasis on assistive
technology and telecommunications technology as job accommodations to
improve employment outcomes.
Discussion: Development of work-related technological devices and
work site modifications have been key elements of NIDRR's engineering
research program for many years. NIDRR has also supported specialized
dissemination efforts to make employers and vocational rehabilitation
counselors aware of technology appropriate for the workplace.
Changes: The Plan now includes references to technological supports
in the employment outcomes chapter and to employment as an intended
outcome in the chapter on technology for access and function.
Comment: One commenter urged a more explicit and extensive
reference to research on the role of self-employment and small business
ownership in improving long-term employment outcomes for individuals
with disabilities.
Discussion: In Chapter 3, Employment Outcomes, NIDRR notes the
alterations in the labor market that have resulted in a larger
contingent workforce; more contract work, temporary or part-time
positions and consultancies, and the decline in the percentage of
stable jobs with full benefits. Self-employment, entrepreneurship,
telecommuting, and home-based employment are all options to be
evaluated for various segments of the disability population. At
present, not enough is known about the characteristics of individuals
or occupations that lend themselves to these solutions, nor is there
definitive evaluation of these options in terms of financial stability
and security, long-term outcomes, and consumer satisfaction.
Changes: The plan, in Chapter 3, now includes the evaluation of
these options as a priority under ``Employer and Workplace Issues'' and
a reference to the role of the State and Federal VR system in using
these approaches with individual consumers.
Health and Function
Comment: Several commenters emphasized the significance of pain and
fatigue, including Chronic Fatigue Syndrome or Chronic Fatigue Immune
Deficiency Syndrome (CFIDS), in the rehabilitation and quality of life
of persons with disabilities. They pointed out that many disabled
individuals have chronic or deteriorating conditions.
Discussion: NIDRR agrees that chronic pain, chronic fatigue, and
impaired stamina are common secondary complications of disability and
should be addressed.
Change: The Plan has been amended to include references to pain and
fatigue in this chapter, and reference to chronic fatigue syndrome as a
potential emerging disability in the Dimensions of Disability chapter.
Comment: One commenter discussed the significance of obesity to
health and disability, and urged that NIDRR direct research to this
topic.
Discussion: NIDRR agrees that obesity is a significant risk factor
for both primary disability and secondary conditions, and may
complicate efforts at rehabilitation. As NIDRR does not have a mission
in the primary prevention of disability or in the
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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
[[Page 45748]]
``telecommunications'' throughout this Chapter. The commenters argued
that while it is true that, in the future, society will be using the
same appliances for both, the core issues to be addressed are quite
different.
Discussion: NIDRR recognizes that while these areas are related,
the research issues are different.
Changes: The Plan has been modified to indicate that these two
areas, while converging, have some significantly different research
issues. Some of these research issues are listed in the Plan to
illustrate these differences.
Comment: One commenter suggested that the priorities related to
information technology should include some reference to research on new
types of computers and display technologies.
Discussion: NIDRR agrees that the rapid pace of developments in
this area generates many more priorities for research, and that the
relative emphasis on various priority topics may change more than once
over the course of this Plan. Therefore, NIDRR refrained from detailing
a large number of priorities in this area. However, it may be helpful
to specify that there will be some priority placed on ensuring
accessibility of new computer technologies emerging onto the market.
Changes: New priorities in information technology now include
references to research on the accessibility of wearable and implantable
computers and personal systems, 3-D display technologies, and cognitive
factors such as language and comprehension levels.
Comment: One commenter reminded NIDRR that it is important to
ensure that assistive technology is culturally responsive and
appropriate for use in rural and isolated areas. The commenter urged
the creation of an explicit project to develop technology to address
the needs of specific cultural groups.
Discussion: NIDRR agrees that there is a danger that assistive
technology will not be acquired or used if it is not sensitive to
cultural and life-style concerns. However, NIDRR believes that it is
important to infuse those considerations into all of its technology
research and development. No one project could develop all types of
technology for all cultural minorities. Furthermore, NIDRR's statute
requires that each applicant for funding specify how its proposed
activities will address the needs of disabled individuals from diverse
minority backgrounds.
Changes: NIDRR has inserted a general admonition in this chapter
concerning the need to consider variations in culture and life-style in
the design and development of assistive technology, and in universal
design of public technological systems as well.
Independent Living and Community Integration
Comment: A number of commenters discussed the issue of home
ownership and affordable housing. Many of these comments focused on
assisting persons with mental retardation or other developmental
disabilities to achieve home ownership. Many of the comments urged
NIDRR to replace an institute for this purpose that was formerly
supported by another Federal agency, or to create a Rehabilitation
Research and Training Center for this purpose.
Discussion: NIDRR recognizes the importance of accessible housing
in the community in its discussion of universal design and accessible
housing and also in its focus on self-determination and research on
physical inclusion. The Plan discusses the identification and
evaluation of models that facilitate physical inclusion, including
housing models that are consistent with consumer choice. As NIDRR is a
research Institute, it is not in a position to implement service and
advocacy demonstrations that were funded elsewhere. NIDRR does believe
that research questions related to housing are potential areas for
research investigation under its program of Field Initiated Projects.
Changes: None.
Comment: Two commenters remarked that independent living services
for older individuals who are blind were not specified as subjects of
research priorities. One commenter noted commonality of objectives
between these programs and other independent living services programs.
Discussion: NIDRR prefers to address research on community
integration and independent living globally and, whenever possible,
across disabilities. Because, as the commenter noted, the objectives of
the independent living services for older blind persons are similar to
the objectives of independent living programs generally, no priority
restricted to those programs has been predetermined. Research on this
topic is appropriate for conduct under the Field-Initiated Projects
program.
Changes: None.
Comment: One commenter observed that institutions and nursing homes
are used frequently and inappropriately for placements of individuals
with traumatic brain injury, and urged that NIDRR support
investigations of the scope of this problem and develop other options
for community integration.
Discussion: NIDRR supports research on community integration for
individuals with traumatic brain injury, as well as for those with
other disabilities. This topic is one that can be investigated within
the scope of NIDRR's research agenda on community integration, and
further specification is not necessary.
Changes: None.
Knowledge Dissemination and Utilization
Comment: One commenter stated that the Plan's emphasis on
accessible media, which is lauded, points up the need for research on
Braille literacy and requests that the Plan include a specific priority
in that area.
Discussion: NIDRR has established key objectives in such areas as
employment, function, access, and integration. NIDRR's agenda responds
to the Department of Education goals supporting lifelong learning and
preparation for employment in a competitive world economy. NIDRR finds
it impossible to detail every specific tactic to reach those objectives
for every individual disability population. Furthermore, in line with
key recommendations of the Long-Range Plan Steering Committee, NIDRR
plans to increase its emphasis on Field-Initiated projects, meaning
that there will be fewer resources for discrete prioritized research
projects. Thus, there are many important topics such as Braille
literacy that may be addressed under the Field-Initiated program. In
addition, in the continuous participatory planning process, there will
be an opportunity to consider these recommendations in planning future
center or project priorities.
Changes: None.
Capacity Building
Comment: One commenter recommended that funds earmarked under
Section 21 of the Rehabilitation Act for minority institutions should
also be directed to other institutions that are serving some minority
students.
Discussion: The statute is specific about the uses of these funds
and the eligibility criteria. The commenter appears to be requesting a
legislative change that is beyond the scope of this Plan.
Changes: None.
Comment: Two commenters discuss the need to use distance learning
strategies in training and in the dissemination of information and
recommended that this approach be specified in the plan.
Discussion: NIDRR is currently supporting pioneering research into
[[Page 45749]]
telerehabilitation and supports distance learning approaches to
training in its ADA program and several of its RRTCs. While the
commenter correctly noted that NIDRR's primary mission is not training,
NIDRR does agree that innovative approaches to capacity building are
necessary.
Changes: Evaluation of the appropriateness and effectiveness of
web-based training and distance learning models to increase capacity
for rehabilitation research has been added as a priority in this
chapter.
Comment: One commenter noted that there was no reference to
Rehabilitation Engineering Research Centers (RERCs) as mechanisms for
advanced training of researchers, and recommended that RERCs be
included in this activity.
Discussion: Historically, RERCs have not had the explicit statutory
mission for training that was part of other NIDRR funded centers.
However, it is certainly true that the need for individuals trained in
technological and engineering research is greater than ever, and NIDRR
agrees that the RERCs must be involved increasingly in researcher,
consumer, and provider training.
Changes: Reference to the RERCs as a mechanism for advanced
research training has been added.
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published in the Federal Register. Free Internet access to the
official edition of the Federal Register and the Code of Federal
Regulations is available on GPO access at: http://
www.access.gpo.gov/nara/index.html
Applicable Program Regulations
34 CFR Parts 350, 356, and 359.
Program Authority: 29 U.S.C. 760-764.
Dated: August 13, 1999.
Judith E. Heumann,
Assistant Secretary for Special Education and Rehabilitation Services.
NIDRR Long-Range Plan
Long Range Plan Table of Contents
Section One: Background
Chapter 1: Introduction and Background
Chapter 2: Dimensions of Disability
Section Two: NIDRR Research Agenda
Chapter 3: Employment Outcomes
Chapter 4: Health and Function
Chapter 5: Technology for Access and Function
Chapter 6: Independent Living and Community integration
Chapter 7: Associated Disability Research Areas
Section Three: Priorities For Related Activities
Chapter 8: Knowledge Dissemination and Utilization
Chapter 9: Capacity Building For Rehabilitation Research
Chapter 10: Strategies For Research Management
References
Section One
Chapter 1: Introduction and Background
``Research has the potential to reinvent the future for millions of
people with disabilities and their families'' (Richard W. Riley, U.S.
Secretary of Education).
Two developments have converged to enhance the significance of
disability research. First, breakthroughs in biomedical and
technological sciences have changed the nature of work and community
life. As these breakthroughs provide the potential for longer and more
fulfilling lives for individuals with disabilities, they reinforce the
second major development--successful independent living and civil
rights advocacy by disabled persons. this intersection of scientific
progress and empowerment of disabled persons has generated momentum for
disability research. These developments highlight the importance of
more fully integrating disability research into the mainstream of U.S.
science and technology policy, and into the Nation's economic and
health care policies.
An estimated 43 million Americans are significantly limited in
their capacity to participate fully in work, education, family, or
community life because they have a physical, cognitive, or emotional
condition that requires societal accommodation. Public Law 101-336, the
Americans with Disabilities Act (ADA) of 1990, declares that
individuals with disabilities have fundamental rights of equal access
to public accommodations, employment, transportation, and
telecommunications. The recognition of these rights, and of society's
obligation to facilitate their attainment, provides the opportunity for
major improvements in the daily lives of individuals with disabilities.
It is the mission of the National Institute on Disability and
Rehabilitation Research (NIDRR) to generate, disseminate, and promote
the full use of new knowledge that will improve substantially the
options for disabled individuals to perform regular activities in the
community, and the capacity of society to provide full opportunities
and appropriate supports for its disabled citizens.
NIDRR's Statutory Purpose
The inception of a Federal rehabilitation research program was part
of the legacy of the late Mary E. Switzer, pioneering director of the
Federal-State vocational rehabilitation program.
By establishing NIDRR \1\ in 1978, through Amendments to the
Rehabilitation Act of 1973 (Public Law 93-112), Congress realized
Switzer's vision and created a research institute in the public
interest. As such, NIDRR must generate scientifically based knowledge
that furthers the values and goals of the disability community, the
knowledge needs of service providers, and the creation of rational
public policy.
---------------------------------------------------------------------------
\1\ Established as the National Institute of Handicapped
Research, the Institute's name was changed to NIDRR by the 1986
Amendments to the Rehabilitation Act.
---------------------------------------------------------------------------
In confounding NIDRR, Congress recognized both the opportunities
for technological and scientific advances to improve the lives of
individuals with disabilities and the need for a comprehensive and
coordinated approach to research, development, demonstration,
information dissemination, and training. The Rehabilitation Act of
1973, as amended (with significant changes in 1992 and 1998), charged
this Institute with the responsibility to provide a comprehensive and
coordinated program of research and related activities to maximize the
full inclusion and social integration, employment, and independent
living of individuals of all ages with disabilities, with particular
emphasis on improving the coordination and effectiveness of services
authorized under the Act. Related activities were mandated to include
the widespread dissemination of research-generated knowledge and
practical information to rehabilitation
[[Page 45750]]
professionals, individuals with disabilities, researchers, and others;
the promotion of the transfer of rehabilitation technology; and an
increase in opportunities for researchers who are individuals with
disabilities or members of minority groups.
NIDRR is ideally positioned to facilitate the transfer of new
knowledge into practice given its administrative co-location with two
major service programs--the Rehabilitation Services Administration
(RSA) and the Office of Special Education Programs (OSEP)--in the
Office of Special Education and Rehabilitative Services (OSERS).
NIDRR's linkage to the greater science community through its leadership
of the Interagency Committee on Disability Research (ICDR) affords an
opportunity to facilitate the transfer of advances in basic research
into the agenda for applied research and knowledge diffusion.
To further advance work in the field of applied research, the
legislation requires a Plan,\2\ updated every five years, describing
NIDRR's future research agenda. This Long-Range Plan presents a five-
year agenda anchored in consumer goals and scientific initiatives. The
plan has several distinct purposes:
---------------------------------------------------------------------------
\2\ As a component of the Department of Education within OSERS,
NIDRR is guided by the Department's Strategic Plan, the OSER's
Strategic Plan, and NIDRR's own strategic goals and objectives as
laid out in its performance plan for the Government Performance and
Results Act (GPRA). The Rehabilitation Act, however, calls for a
plan from NIDRR--one that identifies research needs and sets forth
priorities. This Long-Range Plan describes the issues related to the
content and management of NIDRR's research and other activities that
will constitute the substantive portion of NIDRR's strategies to
achieve its GPRA performance objectives.
---------------------------------------------------------------------------
(1) To set broad general directions that will guide NIDRR's
policies and use of resources as the field of disability enters the
21st century;
(2) To establish objectives for research and dissemination that
will improve the lives of individuals with disabilities and from which
annual research priorities can be formulated;
(3) To describe a system for operationalizing the Plan in terms of
annual priorities, evaluation of the implementation of the Plan, and
updates of the Plan as necessary; and
(4) To direct new emphasis to the management and administration of
the research endeavor.
This Plan was developed with the guidance of a distinguished group
of NIDRR constituents--individuals with disabilities and their family
members and advocates, service providers, researchers, educators,
administrators, and policymakers, including the Commissioner of the
Rehabilitation Services Administration, members of the National Council
on Disability, and representatives from DHHS. It draws upon public
hearings and planning activities conducted under the prior NIDRR
administration (Dr. William H. Graves, Director) and on papers prepared
for the Plan by more than a dozen authors. The Plan addresses a range
of diverse objectives, including:
(1) The needs of individuals with disabilities for knowledge and
information that will enable them to achieve their aspirations for
self-direction, independence, inclusion, and functional competence;
(2) The needs of rehabilitation service providers for information
on new techniques and technologies that will enable them to assist in
the rehabilitation of individuals with disabilities;
(3) The needs of researchers to advance the capabilities of science
as well as the body of scientific knowledge;
(4) The needs of society, and its leadership, for strategies that
will enable it to facilitate the potential contributions of all
citizens; and
(5) The need to transfer findings from basic to applied research.
Accomplishments of the Past
In creating NIDRR, Congress recognized that research has
contributed substantially to improvements in the lives of individuals
with disabilities and their families. Individuals with disabilities
live longer, have a better quality of life, enjoy better health, and
look forward to more opportunities than they did 30 years ago, and more
advances occur every day. Today it is commonplace to find people in
wheelchairs traveling in airplanes and private vehicles, people who are
blind using computers, and people who are deaf attending the theater,
while individuals who have significant disabilities are being
recognized as world leaders in the arts and sciences. These
developments owe much to research advances at both the individual and
societal levels.
Advances at the Individual Level
Research, and its use to improve practice, inform policy, and raise
awareness, has changed the lives and the outlook for individuals with
disabilities and their families. For example, the life expectancy of
individuals who paralysis from spinal cord injury has risen
continuously in the past 25 years (DeVivo & Stover, 1995). The
concerted efforts of U.S. researchers, most of whom received NIDRR
support, have succeeded in greatly reducing the number of severe
urinary tract infections and other urinary tract complications in this
population, thereby reducing renal failure as a cause of death for
these individuals from 1st to 12th place over the past two decades.
Decubitus ulcers also have been a serious problem for persons with
spinal cord injury, as well as for those with stroke, multiple
sclerosis, and other immobilizing conditions. Decubitus ulcers are
destructive and costly to treat, resulting in lost workdays, high
medical expenses, hospitalizations, and further secondary
complications. Through the efforts of medical researchers and
rehabilitation engineers, preventive measures have been developed
including seating, cushioning, and positioning devices; behavioral
protocols; and improved treatment methods. These efforts have greatly
reduced the length of time needed for medical treatment of decubiti,
and the cost of this treatment.
Rehabilitation engineering research has been responsible for the
application of new materials in the design of wheelchairs and orthotic
and prosthetic devices that render these technologies comfortable and
serviceable, and allow their users to accomplish many important
personal goals. For example, wheelchairs racers using the newest sports
wheelchairs can complete races longer than 800 meters at speeds faster
than those of Olympic runners. In the Paralympics, runners using
prosthetic legs repeatedly have demonstrated impressive speeds. In
everyday life, people who use wheelchairs have benefited from
lightweight, transportable chairs as well as powered chairs that
greatly increase the independence of some users.
Advances at the Environmental-Societal Level
In the last two decades, NIDRR has participated in an unprecedented
expansion of opportunities and possibilities for persons with
disabilities. During this period, technology has greatly enhanced the
accommodation of disability, self-awareness has raised the expectation
of and for persons with disabilities, and advocacy has resulted in
recognition of the rights of persons with disabilities to societal
access and reasonable accommodations.
NIDRR has supported research that has facilitated the inclusion of
persons with mental retardation and those with emotional disabilities
in communities, workplaces, and lifelong learning. In
[[Page 45751]]
doing so, NIDRR researchers have documented patterns of
deinstitutionalization; developed techniques for behavior management
that have enabled individuals to leave institutions and live and work
in the community; strengthened self-advocacy and peer-support programs;
developed technological solutions to improve access to housing,
communications, and work; and developed strategies to increase
employment and to support families in their important roles.
Today's research on the application of the principles of universal
design to the built environment, information technology and
telecommunications, transportation, and consumer products is based on
the concept of an environment that is usable by persons with a very
broad range of function. For example, after years of research, all
television sets are not equipped with decoders that allow people with
hearing loss to access most programs. In addition, ergonomic research
undergirds the development of workplace designs and the standards for
building codes, consumer products, and the telecommunications
infrastructure. These advances have been instrumental in leading to a
change in the disability paradigm, expanding the focus of disability to
include environmental factors, as well as individual factors.
NIDRR's research activities also have led to the development of
small businesses in hearing aids, prosthetics, communication devices,
and instructional software. NIDRR research provides an important
stimulus in a field of orphan products with small markets.
Expectations for the Future: A New Paradigm of Disability
The identification of trends in the distribution of disabilities,
the emergence of new disabilities, and the prevalence of disability in
the nation's aging population further challenge the disability research
field. Additionally, the research field must develop ways to measure
and address the impact of environmental factors on the phenomenon of
disability.
NIDRR has provided leadership in research leading to a new
conceptual foundation for organizing and interpreting the phenomenon of
disability--a ``New Paradigm'' of disability. This paradigm is a
construction of the disability and scientific communities alike and
provides a mechanism for the application of scientific research to the
goals and concerns of individuals with disabilities. The new paradigm
of disability is neither entirely new nor entirely static. Thomas Kuhn
defines paradigm as ``universal achievements that for a time provide
model problems and solutions to a community of practioners'' (Kuhn,
1962). The term paradigm is used here in the quasi-popular sense it has
acquired over the last 40 years to indicate a basic concensus among
investigators of a phenomenon that defines the legitimate problems and
methods of a research field. NIDRR posits that the paradigm in this
case applies not to a single field, but to a single phenomenon--
``disability''--as it is investigated by multiple disciplinary fields.
The disability paradigm that undergirds NIDRR's research strategy for
the future maintains that disability is a product of an interaction
between characteristics (e.g., conditions or impairments, functional
status, or personal and social qualities) of the individual and
characteristics of the natural, built, cultural, and social
environments. The construct of disability is located on a continuum
from enablement to disablement. Personal characteristics, as well as
environmental ones, may be enabling or disabling, and the relative
degree fluctuates, depending on condition, time, and setting.
Disability is a contextual variable, dynamic over time and
circumstance. Environments may be physically (in)accessible, culturally
(ex) (in)clusive, (un)accommodating and (un)supportive. For example, on
a societal level, institutions and the built environment were designed
for a limited segment of the population. Researchers should explore new
ways of measuring and assessing disability in context, taking into
account the effect of physical, policy, and social environments, and
the dynamic nature of disability over the lifespan and across
environments.
Perhaps the new paradigm can be understood best in contrast to the
paradigm it replaces and through a clarification of the importance the
paradigm has for all aspects of research and policy (see Table 1). The
``old'' paradigm, which was reductive to medical condition, and is
reflected in many aspects of the Nation's policy and service delivery
arenas, has presented disability as the result of a deficit in an
individual that prevented the individual from performing certain
functions or activities. This underlying assumption about disability
affected many aspects of research, rehabilitation, and services.
The new paradigm of disability is integrative and holistic, and
focuses on the whole person functioning in an environmental context.
This new paradigm of disability is reflected in the ADA and sets a
goals framework for research, policy, and delivery of services and
supports relative to disability. The new paradigm with its recognition
of the contextual aspect of disability--the dynamic interaction between
individual and environment over the lifespan that constitutes
disability--has significant consequences for NIDRR's research agenda
over the next decade. These consequences include: Changes in the ways
disability is defined and conceptualized; new approaches for measuring
and counting disability; a focus on new research issues; and changes in
the way research is managed and conducted.
Definitional Issues
One of the fundamental consequences of the new paradigm is the need
for the reformulation of definitions. The definition of disability is
critical to building a conceptual model that identifies relevant
components of disablement and their relationships to each other, and
the dynamic mechanisms by which they change. Typically, definitions of
disability have varied depending on their intended use. From a research
perspective, definitions used for counting and describing disabled
people have been important, while definitions establishing eligibility
for benefits and services have been critical from the policy
perspective.
The majority of Federal definitions of disability, including those
in the Rehabilitation Act, the ADA, and the National Health Interview
Survey (NHIS), derive from the old paradigm. These definitions all
attribute the cause of limitations in daily activities or social roles
to characteristics of the individual, that is, ``conditions'' or
``impairments.'' Even the ADA, which promotes accessibility and
accommodations, locates the disability with the individual. This is
understandable not only because of the time involved in changing a
paradigm, but because of the lack of a system to define, classify, and
measure the environmental components of disability and the absence of a
model to describe and quantify the interaction of environmental and
individual variables. This need for a change in definitions must be
addressed by activities such as the attempt to revise the International
Classification of Impairments, Disabilities, and Handicaps (ICIDH)
(1980), to better define and measure the factors external to the
individual that contribute to disability.
[[Page 45752]]
Table 1.--Contrast of Paradigms
------------------------------------------------------------------------
`Old' paradigm `New' paradigm
------------------------------------------------------------------------
Definition of Disability.... An individual is An individual with
limited by his/her an impairment
impairment or requires an
condition. accommodation to
perform functions
required to carry
out life
activities.
Stragegy to Address Fix the individual, Remove barriers,
Disability. correct the deficit. create access
through
accommodation and
universal design,
promote wellness
and health.
Method to Address Disability Provision of Provision of
medical, supports, e.g.,
vocational, or assistive
psychological technology,
rehabilitation personal assistance
services. services, job
coach.
Source of Intervention...... Professionals, Peers, mainstream
clinicians, and service providers,
other consumer
rehabilitation information
service providers. services.
Entitlements................ Eligibility for Eligibility for
benefits based on accommodations seen
severity of as a civil right.
impairment.
Role of Disabled Individual. Object of Consumer or
intervention, customer, empowered
patient, peer, research
beneficiary, participant,
research subject. decision-maker.
Domain of Disability........ A medical A socio-
``problem''. environmental issue
involving
accessibility,
accommodations, and
equity.
------------------------------------------------------------------------
Note: Adapted from materials prepared for this Long-Range Plan by Gerben
DeJong and Bonnie O'Day.
Measurement Issues
Sources of data, including demographic studies and national
surveys, should be adjusted to reflect new definitions or concepts, and
to take into account contextual variables in survey sampling
techniques. Survey questions must reflect environmental factors as well
as individual factors such as socioeconomic characteristics or
impairments. Under the new paradigm, questions about employment status,
for example, should focus on the need for accommodations as well as on
the existence of an impairment. Measures must enable researchers to
predict and understand changes in the prevalence and distribution of
disabilities--the emerging universe of disability--which illustrates
the link between underlying social and environmental conditions such as
poverty, race, culture, isolation, the age continuum, and the emergence
of new causes of disability, new disability syndromes, and the
differential distribution of disability among various population groups
in our society.
Concern increasingly is focused on vulnerable populations as
researchers find more evidence that disability, and risk thereof, are
disproportionately concentrated in populations in poverty, populations
that lack access to state-of-the-art preventions or interventions, and
populations that are exposed to additional external or lifestyle risk
factors. There are new impairments, exacerbated impairments, or new
etiologies that are associated with socioeconomic status, education
levels, access to health care, nutrition, living conditions, and
personal safety. Individuals from racial, linguistic, or cultural
minority backgrounds are more likely to live in poverty and to lack
adequate nutrition, pre-natal and other health care, access to
preventive care, and health information. These individuals also have
more exposure to interpersonal violence and intentional injury. The new
paradigm's recognition of environmental factors leads to a focus on
underserved minority populations--part of the emerging universe of
disability discussed in Chapter Two.
New Focus of Research Inquiries
The new paradigm adds, or increases the relative emphases on,
certain areas of inquiry. Research must develop new methods to focus on
the interface between person and society. It is not enough simply to
shift the focus of concern from the individual to the environment. What
is needed are studies of the dynamic interplay between person and
environment; of the adapting process, by the society as well as by the
individual; and of the adaptive changes that occur during a person's
lifespan. The aging of the disabled population in conjunction with
quality of life issues dictates a particular focus on prevention and
alleviation of secondary disabilities and co-existing conditions and on
health maintenance over the lifespan. Research must focus on the
development and evaluation of environmental options in the built
environment and the communications environment, including such
approaches as universal design, modular design, and assistive
technology that enable individuals with disabilities and society to
select the most appropriate means to accommodate or alleviate
limitations. Research must lead to a better understanding of the
context and trends in our society that affect the total environment in
which people with disabilities will live and in which disability will
be manifested. These include: economy and labor market trends; social,
cultural, and attitudinal developments; and new technological
developments. Research must develop ways to enable individuals with
disabilities to compete in the global economy, including education and
training methods, job accommodations, and assistive technology.
Research must develop an understanding of the public policy context
in which disability is addressed, ignored, or exacerbated. General
fiscal and economic policies, as well as more specific policies on
employment, delivery and financing of health care, income support,
transportation, social services, telecommunications,
institutionalization, education, and long-term care are critical
factors influencing disability and disabled persons. Their frequent
inconsistencies, contradictions, and oversights can inhibit the
attainment of personal and social goals for persons with disabilities.
Research Management
The new paradigm requires new models for the management of the
research enterprise that include stakeholder participation,
interdisciplinary and collaborative efforts, more large-scale and
longitudinal research, and new research methodologies to conduct
meaningful studies in the emerging policy environments. Training in
disability and rehabilitation research must be expanded to include
disciplines such as architecture and business. There will be new venues
for the conduct of research, and a need for validated methodologies to
conduct research on dynamic person-environment interactions and under
[[Page 45753]]
constricted circumstances. Through training programs, the disability
and rehabilitation research field also should work to increase the
number of disabled and minority researchers.
The role of disabled consumers in research under the new paradigm,
as well as in policy and services, is proactive and participative.
Consumers have a role in shaping their environments and in managing the
supports and services they require. Research must be more inclusive and
participatory, involving not only consumers but also other stakeholders
in understanding and interpreting research, in disseminating and
applying research findings, and in planning, conducting, and evaluating
research. Consumer satisfaction with research as well as services will
be subject to assessment.
Moreover, interdisciplinary and collaborative research are
important for explicating the multidimensional qualities of disability.
It is only through research coordination and collaboration that the
findings of basic research can be translated into the knowledge base of
disability research.
Regardless of its auspices, research is a cumulative and
integrative process; new knowledge comes from many sources, often in
response to concerted pursuit, but also sometimes serendipitously.
Research is often slow-moving and always painstaking; one of the
ironies of the research effort is that a disproved hypothesis may
constitute a successful project, particularly if it diverts the time
and resources of others from an unfruitful direction. As one
participant in the planning process put it, ``sometimes the new
questions you stimulate are more important than the ones you answer in
your research project.'' NIDRR is pleased to have collaborated with
many other Federal and private agencies that sponsor various aspects of
disability and rehabilitation research, and is committed to making
research an inclusive, collaborative, and coordinated undertaking.
Organization of the Plan
This introductory chapter has set the framework for understanding
NIDRR's mission and approach. After the next chapter, ``Dimensions of
Disability,'' the Plan will discuss, in Section Two, an agenda for
research that provides opportunities for leadership and innovation.
NIDRR will implement this research agenda in conjunction with excellent
management strategies, a dynamic program of knowledge dissemination,
and a vigorous effort to build capacity of the field through training
researchers and users of research. Section Three will focus on these
activities.
NIDRR intends this five-year research Plan to balance the competing
demands of consumer relevance and scientific rigor, and to present an
agenda for research that is responsive, scientifically sound, and
accountable, and which makes a contribution to the refinement of the
Nation's science and technology policy.
Chapter 2: Dimensions of Disability
``Policy issues at the forefront of the disability agenda require
accurate data, routinely repeated measures, sophisticated analysis, and
broad dissemination'' (National Council on Disability, Action Steps for
Changes to Federal Disability Data Collection Activities, draft report,
Sept. 19, 1997).
This chapter of the Plan presents NIDRR's operative definitions of
disability, discusses several analytical frameworks for the
categorization of disability, and highlights deficits in current
definitions and data collection. The chapter then presents data about
the prevalence and distribution of disability in the nation and
includes selected demographic data related to the major NIDRR goals of
independence, inclusion, and employment.
Definitions and Concepts of Disability and Disablement
The definition of an individual with a disability under which NIDRR
operates is contained in the Rehabilitation Act of 1973, (Public Law
93-112) as amended, and is as follows: any person who (i) has a
physical or mental impairment which substantially limits one or more of
such person's major life activities, (ii) has a record of such an
impairment, or (iii) is regarded as having such an impairment (29
U.S.C. 706(8)(B)). This definition is similar to those contained in the
ADA and the Technology-Related Assistance for Individuals with
Disabilities Act (Tech Act).
The impairments that lead to limitations in activities may be
related to genetic conditions or to acquired diseases or traumas that
may occur throughout the lifespan. The extent of disability, and the
conditions associated with disability, are significant to individuals
and their families, and to the Nation.
Prevailing definitions, based in statute and supporting program
authorities, clearly do not reflect new paradigm concepts of
disability. Nearly all definitions identify an individual as disabled
based on a physical or mental impairment that limits the person's
ability to perform an important activity. Note that the complementary
possibility--that the individual is limited by a barrier in society or
the environment--is never considered. This Plan suggests that it is
useful to regard an individual with a disability as a person with an
impairment who requires an accommodation or intervention rather than as
a person limited solely by a condition. This new approach derives from
the interaction between personal variables and environmental
conditions. Because accommodations can address person-centered factors
as well as socio-environmental factors, a ``need for accommodation'' is
a more adaptable concept for the new paradigm.
The various definitions of disability that have formed the basis
for both program eligibility and survey data collection do not have
explanatory power for research purposes. The field of disability
research lacks a widely accepted conceptual foundation for the
measurement of disability as well as consistent definitions for data
collection. In recent years, however, a number of efforts to develop
conceptual frameworks to organize information about disability have
been initiated (see Table 2). Among these efforts are:
(1) The ICIDH, which was developed in 1980 by the WHO. The ICIDH
was designed to provide a framework to organize information about the
consequences of disease. An ongoing revision process is considering
social, behavioral, and environmental factors to refine the concept of
``handicap;''
Table 2.--Concepts in Models of Disability
------------------------------------------------------------------------
ICIDH Nagi/1991 IOM NCMRR
------------------------------------------------------------------------
Disease--Something abnormal Active pathology-- Pathophysiology--Int
within the individual; Interruption or erruption or
etiology gives rise to interference of interference with
change in structure and normal bodily normal
functioning of the body. processes or physiological and
structures. developmental
processes or
structure.
[[Page 45754]]
Impairment--Any loss or Impairment--Anatomic Impairment--Loss or
abnormality of al, physiological, abnormalities of
psychological, mental or emotional cognitive,
physiological, or abnormalities or emotional,
anatomical structure or loss. physiological, or
function at the organ level. anatomical
structure or
function, including
losses or
abnormalities, not
those attributable
to the initial
pathophysiology.
Disability--Any restriction Functional Functional
or lack (resulting from an limitation--Restric limitation--Restric
impairment) of ability to tion or lack of tion or lack of
perform an activity in the ability to perform ability to perform
manner or range considered an action or an action in the
normal for a human being. activity in the manner or within
manner or within the range
the range consistent with the
considered normal parts of an organ
that results from or organ system.
impairment.
Handicap--A disadvantage Disability--Inabilit Disability--Inabilit
resulting from an y or limitation in y or limitation in
impairment or disability performing socially performing tasks,
that limits or prevents defined activities activities, and
fulfillment of a normal and roles expected roles to levels
role depending on age, sex, of individuals expected within the
and sociocultural factors. within a social and physical and social
physical context.
environment.
Societal limitation--
Restrictions
attributable to
social policy and
barriers
(structural or
attitudinal) which
limits fulfillment
of roles and denies
access
opportunities that
are associated with
full participation
in society.
------------------------------------------------------------------------
Note: Information in column 1 is from International Classification of
Impairments, Disabilities, and Handicaps, by the World Health
Organization, 1980, Geneva, Switzerland: Author.
Information in column 2 is from Disability Concepts Revisited:
Implications for Prevention, by S.Z. Nagi, 1991, (p. 7) in Disability
in America: Toward A National Agenda for Prevention by A.M. Pope and
A.R. Tarlov (Eds.), 1991, Washington, DC: National Academy Press.
Information in column 3 is from Research Plan for the National Center
for Medical Rehabilitation Research, (p. 33), by the National
Institute of Child Health and Human Development (1993) (NIH
Publication No. 93-3509), Washington, DC: U.S. Government Printing
Office.
(2) The ``Nagi model'' (Nagi, 1991), which was presented by the
Institute of Medicine (IOM) in its 1991 Disability in America report
(Pope & Tarlov, 1991). The model was revised in the 1997 report
entitled Enabling America (Brandt & Pope, 1997). The IOM (1997) also
posits that disability is a function of the interaction of individuals
with the social and physical environments. The revised Nagi model
describes the environment as including the natural environment, the
built environment, culture, the economic system, the political system,
and psychological factors. The new model includes a state of ``no
disabling condition.'' The state of disability is not included in this
model because disability is not viewed as inherent in the person, but
rather as a function of the interaction of the individual and the
environment; and
(3) The schematic adopted by the National Center for Medical
Rehabilitation research (NCMRR) in its Research Plan (1993, p.33),
which added the concept of societal limitation.
Continuum of Enablement-Disablement
The most widely used conceptual frameworks applied to disability
and rehabilitation research have in common a continuum that progresses
from some underlying etiology or disease to limitations in physical or
mental function. These functional limitations, when combined with
external or environmental conditions, may lead to some deficit in the
performance of daily activities or expected social roles. In ``Enabling
America,'' the IOM has urged the adoption of a new conceptual framework
as a model for the enablement-disablement process (Brandt & Pope,
1997). This model has the advantage of identifying components of
person-centered and environment-centered variables. The IOM framework
identifies four categories of individual factors (person, biology,
behavior, and resources) and nine categories of external environment
factors (natural, culture, engineered environments, therapeutic
modalities, health care delivery system, social institutions, macro-
economy, policy and law, and resources and opportunities).
NIDRR research focuses on crucial areas of functional loss,
disability, and socio-environmental aspects of the continuum. In
keeping with the new paradigm, NIDRR emphasizes the importance of
explicating the connection between the person and the environment, and
interface that determines the disabling consequences of impairments and
conditions. This study of the dynamic interaction among various
individual and environmental variables requires NIDRR's continued and
increased attention to shaping the structure, management, and capacity
for research. methodologies are needed, often in an interdisciplinary
context, that can illuminate multiple facets of disablement and
enablement from numerous perspectives.
Limitations in Federal Data Sources
The various Federal data collection efforts that assess the extent
and distribution of disability in society are less than ideal for
measuring the population that meets the NIDRR definition of an
individual with a disability. These efforts generally can be
categorized as either program data, which focus on the recipients of
Federal benefit or service programs, or national surveys that focus on
perceived limitations in activities caused by health conditions. Both
program and survey data focus on the ``physical or mental impairment''
as the cause of the limitation. This is a reductionist approach that
discounts social and environmental factors or assumes that these
factors are subsumed within individual attributes.
The National Health Interview Survey (NHIS), are the two most
widely used sources of survey data to describe the population of
individuals with disabilities. The data from the Disability Supplement
to the NHIS currently is being analyzed by a number of researchers and
will yield much-needed information on persons with disabilities. The
Disability Supplement is the product of a 1994 to 1996 data collection
effort that was the result of years of cooperative development by
Federal agencies concerned with disability issues. While the Disability
Supplement will have enormous value to its users, the Supplement, like
other data sources, lacks any measures of the environmental factors
(social or physical) that contribute to disablement, as well as any
measures of interaction between person and environment.
Federal data collection efforts, including the Census, the NHIS,
the
[[Page 45755]]
SIPP, the Current Population Survey (CPS), and many other program-
specific or topical data collections, not only fail to address
important new concepts of disability, but also are limited in other
respects. Sampling procedures may result in the exclusion of low-
incidence disabilities and insufficient information about minority
populations; self-reporting leads to underreporting many conditions;
and survey formats frequently are inaccessible to persons with
cognitive, sensory, or language limitations. Many Federal data
collection efforts, as well as most private ones, do not routinely
include information about persons with disability in their collection
and reporting. Improvements in data quality and availability will be a
key goal of NIDRR in this five-year Plan.
Particular problems exist in defining and quantifying disability in
children. Many service programs rely on diagnostic categories for
eligibility, and even those that have attempted a functional approach
have had difficulty assessing the effect of context, expectations,
transactions with adults, chronicity and duration, in determining the
extent of disability among children.
The Office of Special Education Programs (OSEP)--administers the
Individuals with Disabilities Education Act (IDEA), which mandates that
schools have a full range of services necessary to provide a free and
appropriate public education for children with disabilities. According
to OSEP's 1995-1996 IDEA annual report to Congress, 5.6 million
disabled children (ages 3 to 21) received educational services.
Approximately, one-half of these children were identified as having
specific learning disabilities, Other high incidence disabilities
included speech and language impairments, mental retardation, and
serious emotional disturbances.
Because OSEP and other Department of Education offices focus their
research on activities based in the educational system, including the
development of curriculum and teaching methods and the training of
teachers, NIDRR has directed its research on disabled children to
aspects of life outside that arena. These issues include family-child
relations; social relationships; community integration; medical
technologies for replacing, or substituting for, function;
accommodations; and supports to families. NIDRR research also has a
role in addressing the critical problems of succeeding in the
transitions from school to adult life in the community, and in the work
and adult service systems. In a broader context, it is important to
note that 5.5 percent of all American families contain one or more
children with a disability (LaPlante, Carlson, Kaye, & Wenger, 1996).
Children with disabilities are more likely to be found in low-income
families and families headed by single mothers.
Prevalence of Disability
The importance of disability research is underscored by the
frequency and widespread dispersion of disabilities in the U.S.
population. The following data about disability were selected because
of their relevance to NIDRR's specific priorities and to the overall
objectives of this plan.
The 1994 NHIS estimated that 15 percent of the noninstitutionalized
civilian population--some 38 million people--were limited in activity
due to chronic conditions (Adams & Marano, 1995). The Institute of
Medicine interpolated the NHIS data to indicate that 38 percent of
disabilities were associated with mobility limitations, followed by
chronic disease (32 percent); sensory limitations (8 percent);
intellectual limitations (7 percent); and all other conditions (15
percent) (Pope & Tarlov, 1991). The SIPP identified 48.9 million
persons who reported themselves as limited in performing functional
activities or in fulfilling a socially defined role or task. Of these,
24.1 million persons were identified as having a ``severe disability''
(Kraus, Stoddard, & Gilmartin, 1996). Both surveys excluded persons in
nursing homes or institutions, who would be expected to have a high
rate of disability. Including that population through extrapolation has
led to the commonly cited figures of 43 to 48 million Americans with
disabilities.
Both the NHIS and SIPP focus on limitations in major life
activities, due to a physical or mental condition, but also provide
data on persons who are limited in or unable to perform activities of
daily living (ADLs)--such as eating, bathing, dressing, toileting, or
transferring--without assistance or devices, or to perform instrumental
activities of daily living (IADLs)--such as basic home care, shopping,
meal preparation, telephoning, and managing money. Approximately eight
million people reported difficulty with ADLs, and approximately four
million with one or more ADLs needed the assistance of another person
(McNeil, 1993).
The range of these estimates--from approximately 4 million people
who need help simply to sustain their lives to the 40 million who
report any kind of activity limitation--illustrates the danger in
discussing the disabled population or its needs as a homogeneous group.
More refined data are needed to assess the needs for medical and health
care, vocational rehabilitation and employment assistance, supports for
living in the community, and assistive technology.
Demographics of Disability: Age, Gender, Race, Education, Income, and
Geography
Disability is distributed differently in the population according
to characteristics of age, gender, race, and ethnicity, and both region
and size of locality in which a person resides. Educational level is
inversely correlated with the prevalence of disability. Poverty is a
key factor both as a contributing cause and a result of disability.
Table 3 presents NHIS data on sociodemographic correlates of activity
limitations. This table indicates that disability is very likely linked
to other social factors and reinforces the need to address disability
in a broad context.
Emerging Universe of Disability
NIDRR has begun to focus on an ``emerging universe'' of disability,
in which either the conditions associated with disability, their
distribution in the population, or their causes and consequences, are
substantially different from those in the traditional disability
population.
This emerging universe is identified with new disabling conditions;
new causes for impairments; differential distributions within the
population; increased frequency of some impairments, including those
associated with the aging of the population; and different consequences
of disability, particularly as related to social-environmental factors,
lifespan issues, and projected demands for services and supports.
Researchers have identified a ``new morbidity'' (Baumeister,
Kupstas, & Woodley-Zanthos, 1993) in which the cluster of factors
associated with poverty--such as poor education, poor medical care, low
birthweight babies, lack of prenatal care, substance abuse,
interpersonal violence, isolation, occupational risks, and exposure to
environmental hazards--have a high correlation with the existence of
impairments, disabilities, and exacerbated consequences of
disabilities. For example, the leading cause of mental retardation is
no longer RH-factor incompatibility, but may be related to any factor
associated with high-risk births, which are more common among low-
income mothers.
[[Page 45756]]
Interpersonal violence accounts for the rising incidence of certain
conditions, especially spinal cord injury and traumatic brain injury,
among inner-city minority populations. These developments have enormous
implications for research problems to be addressed and future demands
for various types of services.
Table 3.--Degree of Activity Limitation Due to Chronic Conditions, by Demographic
Characteristics: 1994
----------------------------------------------------------------------------------------------------------------
Limited in
Unable to amount or kind Limited, but
Characteristic All persons With activity carry on major of major not in
major
(in thousands) limitation activity activity activity
(percent) (percent) (percent)
----------------------------------------------------------------------------------------------------------------
All persons.................... 259,634 15 4.6 5.7 4.7
Age:
Under 18 years............. 70,025 6.7 0.7 4.2 1.8
18-44 years................ 108,178 10.3 3.2 3.9 3.1
45-64 years................ 50,405 22.6 9.2 7.9 5.5
65-69 years................ 9,685 36.7 16.7 11.9 7.3
70 years and older......... 21,340 38.9 8.1 12.6 19.3
Sex:
Male....................... 126,494 14.4 4.8 5.3 4.3
Female..................... 133,139 15.7 4.4 6.1 5.2
Race:
White...................... 214.496 15.1 4.4 5.8 4.9
African American........... 33,035 16.3 6.3 6.2 3.8
Family Income:
Under $10,000.............. 23,363 28 11.2 9.9 6.9
$10,000-$19,999............ 37,271 21.1 7.3 7.7 6.2
$20,000-$34,999............ 54,171 14.8 4.1 6.0 4.7
$35,000 or more............ 100,302 9.4 1.9 3.9 3.6
Geographic Region:
Northwest.................. 50,610 14.3 4.3 5.6 4.3
Midwest.................... 63,238 14.6 3.9 6.0 4.6
South...................... 88,088 16.1 5.3 6.0 4.8
West....................... 57,697 14.7 4.6 5.0 5.0
Place of Residence:
Metropolitan statistical 203,079 14.3 4.4 5.5 4.5
area (MSA)................
Central city............... 79,510 15.8 5.4 5.9 4.5
Not central city........... 123,570 13.4 3.8 5.2 4.5
Not MSA.................... 56,554 17.6 5.4 6.6 5.6
----------------------------------------------------------------------------------------------------------------
Note: From Tables 67-68 in Current Estimates from the National Health Interview Survey, 1994,
Series 10, No.
193, by P.F. Adams and M.A. Marano, Hyattsville, MD: National Center for Health Statistics.
New illnesses or conditions have emerged in recent years; some, but
by no means all, are poverty-related. AIDS, Attention Deficit
Hyperactivity Disorder (ADHD), violence-induced neurological damage,
repetitive motion syndrome, chronic fatigue syndromes, childhood
asthma, drug addiction, and environmental illnesses are all either
relatively new conditions or ones of increasing prevalence and severity
in society. Additionally, the aging of the population, given the higher
rates of many disabilities among older persons, is another demographic
factor that will influence issues to be addressed by applied research.
Many emergent disabilities, including those attributed to violence,
abuse, and poverty, have a higher incidence among women and are
particularly likely to reflect women with already existing
disabilities.
As new causes of disabilities emerge, the new paradigm of
disability clearly provides a progressive approach to successful
addressing environmental and social barriers for people with
disabilities. These new issues have implications not only for
disability research and services, but also for public health and
prevention activities.
Disability, Employment, and Independent Living
Because of NIDRR's statutory concern with improving employment
outcomes for persons with disabilities, it is valuable to present a
brief overview of the employment status of persons with disabilities.
LaPlante & Carlson (1996) report that 19 million Americans with an
impairment or health problem (ages 18-69) were unable to work or
limited in the amount or type of work they could perform. According to
the CPS, about 10 percent of the population between 16 and 64 had work
limitations (different age ranges reflect changing concepts of
``working age'') (LaPlante, Kennedy, Kay, & Wenzer, 1996). Back
disorders, heart disease, and arthritis were frequently reported as
major causes of work disability (LaPlante & Carlson, 1996). However,
mental illnesses is one of the most work-disabling conditions; data
showed that among adults with serious mental illness (an estimated 3.3
million persons), 29 percent were reported to be unable to work and 18
percent were limited in their ability to work because of their mental
disorder (Barker, Manderscheid, Hendershot, Jack, Schoenborn, &
Goldstrom, 1992).
While the presence of any disability reduces the likelihood of
employment, the effect is closely tied to the severity of the
disability. The SIPP estimates that among persons 21 to 64 years old,
the employment rate was 81 percent for persons with no disability, 67
percent for persons with a disability that was not severe, and 23
percent for persons with a severe disability (McNeil, 1993). Only 21
percent of persons needing personal assistance with ADLs or IADLs were
employed (U.S. Bureau of the Census, 1998). The unemployment rate for
persons with disabilities, which counts only those persons in the labor
force, was 12.6 percent, more than twice the unemployment rate of
nondisabled Americans (Stoddard, Jans, Ripple, & Kraus, 1998).
[[Page 45757]]
Disabled persons who work full time typically earn less than
nondisabled workers with the earnings gap widening with age and
severity of disability. Persons with disabilities who do not work may
qualify for income support payments under Social Security Disability
Insurance (SSDI) (if they have a work history) or Supplementary
Security Income (SSI). As of January 1996, 5 million persons received
SSDI benefits, including 4.2 million disabled workers, 686,300 disabled
adult children, and 173,800 disabled widows and widowers (Social
Security Administration, 1996). A 1993 report cited mental disorders as
the most frequent cause of disability (35 percent), followed by
musculoskeletal, circulatory, and nervous system disorders (Social
Security Administration, 1993).
At the end of 1993, about 3.8 million persons under age 65 received
SSI benefits due to disability and poverty (Kochhar & Scott, 1995).
More than one-half of these persons had either mental retardation or
mental illness. The Social Security Administration (SSA) has noted a
sharp increase in the number of disabled SSI recipients, an increasing
proportion with mental illness, and a growing number who enter the
rolls as children and remain for long periods (Kochhar & Scott, 1995).
Many of these increases in both SSDI and SSI programs can be
attributed to program changes (such as different eligibility
requirements and outreach), to a shifting from other income support
categories, to changes in stability of employment and private health
insurance, and to the bundling of health insurance coverage with income
supports. Eligibility for public health insurance is generally tied to
the receipt of income transfer payments from a public income support
program.
Data elements about residential status, family composition, and
need for personal assistance services illuminate some of the
characteristics of the disabled population. Of the estimated 48.9
million persons with disabilities from the SIPP data, 32.5 million own
their own homes and 16.4 million rent (McNeil, 1993). An estimated 9.8
million live alone and over 27 million persons with disabilities are
married. An estimated 8.3 million individuals with disabilities live in
a household with their spouse and children under 18 years of age, while
an estimated 1.9 million are single parents with disabilities.
An estimated 20.3 million families, or 29.2 percent of all 69.6
million families in the United States have at least one member with a
disability (as measured by having an activity limitation). This rate
for families is much higher than the rate of individuals having a
disability. Further, there appears to be a clustering of people with
disabilities in families and households, with a much higher than
expected likelihood of both adult partners having disabilities and a
greater than average chance that children with disabilities will live
with one or more parents with disabilities. Families headed by adults
with disabilities are more likely to live in poverty or to be dependent
on public income support programs.
Conclusion
This chapter of the Plan highlighted some important disability
statistics that illustrate the scope of disability in the United
States. Throughout the Plan, significant data also are interspersed
about the use of assistive technology, access to health care, labor
force participation, and community living. In addition, Chapter Seven
addresses the need for future research in disability data collection.
Overall, current data on disabilities provide both a picture for
concern and a cause for optimism. People with disabilities tend to have
lower than average educational levels, low income levels, and high
unemployment rates, especially for people with severe disabilities.
Moreover, the relationship between disability and poverty tends to be
bi-directional, with the conditions of poverty creating a high risk for
disability and disability itself leading to poverty. At the same time,
it is clear that more individuals with disabilities are completing high
school and college, an education is closely correlated with employment
and independence. Increasingly, individuals with disabilities are
living in the community, marrying, and raising families. These
individuals may receive increased attention from businesses as they
constitute a market for accessible housing and adaptive devices,
recreation, adult education, accommodated travel, health care, and
other services.
Potential providers of goods and services in the marketplace--
whether purveyors of travel and recreation, assistive devices,
clothing, or any other commodities--want estimates of the size and
characteristics of the potential market for their products. It is
becoming increasingly important to provide these market estimates and
to package data to meet the needs of manufacturers and distributors.
It is also true that, while the presence of a disability may
present significant challenges to individuals and families, society
demonstrates a growing capacity to assist persons with disabilities to
meet their needs for equity and access through new discoveries in
research, improved service methods, and informed policy decisions.
Section Two: NIDRR Research Agenda
Chapter 3: Employment Outcomes
``With the ADA, we began a transformation of the proverbial ladder
of success for some Americans into a ramp of opportunity for all
Americans. Yet, * * * (so many) Americans with severe disabilities are
still unemployed, * * * (making it) clear we still have many steps to
take before people with disabilities have full access to the American
dream'' (Tony Coelho, Chairman, President's Committee on Employment of
People with Disabilities) 1999.
Overview
Unemployment and under-employment among working-age Americans with
disabilities are ongoing, and seemingly intractable, problems. Data
from the Census Bureau on the labor force status of persons ages 16 to
64 in fiscal year 1996 highlight the magnitude of this problem. While
four-fifths of working-age Americans are in the labor force and more
than three-fourths are working full time, less than one-third of
persons with disabilities are in the labor force, and fewer than one-
quarter are working full time. Fully two-thirds of working-age persons
with disabilities are not in the labor force; other research suggests
that a substantial portion of this staggering figure can be attributed
to disincentive inherent in social and health insurance policies, to
discouragement, and to lack of physical access to jobs. Finally, among
those in the labor force, the unemployment rate for disabled persons is
more than double that of persons without disabilities (12.6 percent
versus 5.7 percent).
While the comparative rates of labor force participation and full-
time employment are two indicators of the workforce status of
individuals with disabilities, a comparison of earnings is even more
striking. In Figure 1, SIPP data illustrate the discrepancies in
earnings for disabled and nondisabled workers.
Even when persons with disabilities are employed full-time, their
earnings are substantially lower than those of persons without
disability. Severity of disability is also correlated inversely with
the level of earnings. Disparities in employment rates and earnings are
even greater for disabled individuals from minority backgrounds and
those with
[[Page 45758]]
the most significant disabilities (Stoddard, Jans, Ripple, & Kraus,
1998).
Economy and Labor Force Issues
Several emerging characteristics of the nation's labor market
exacerbate the difficulties experienced by persons with disabilities in
their attempts to gain employment and even in their motivation to seek
employment. Downsizing, for example, has lead to a reduction in the
percentage of the labor force with stable, long-term, benefits-carrying
jobs; much of business and industry is moving to other configurations
that fill their labor needs without requiring a long-term commitment on
the part of the employer. The ``contingent'' workforce takes many
forms, including on-call workers and those in temporary help agencies,
workers provided by contract firms, and independent contractors paid
wages or salaries directly from the company. Many of these jobs lack
security and benefits, particularly health insurance, that most persons
with disabilities require for participation in the labor force.
BILLING CODE 4000-01-M
[[Page 45759]]
[GRAPHIC] [TIFF OMITTED] TN20AU99.000
BILLING CODE 4000-01-C
[[Page 45760]]
In addition, while many business spokespersons and educators point
to the need for highly educated, highly skilled workers if the nation
is to succeed in the increasingly competitive global economy, the
reality is more complex. On the one hand, availability jobs requiring
specialized skills combined with rapid advances in technology may
improve the employment prospects of persons with disabilities as well
as other workers, through such work arrangements as telecommuting, and
an expanding market for self-employment or small businesses. On the
other hand, the labor market appears to be moving toward increasing
bifurcation, with top-tier technocracy jobs for persons with
sophisticated work skills, and lower-tiered unskilled service and
maintenance jobs for the less prepared.
Assisting individuals with significant disabilities in moving from
dependency on public benefits or family support, or from episodic,
poor-paying jobs, into stable jobs that will allow them to become self-
supporting, is a complex challenge. This challenge involves a number of
economic sectors, and service and support systems, and must include an
examination of social policies. Providing appropriate assistance
requires an extensive knowledge base encompassing economic trends,
education and job training strategies, job development and placement
techniques, workplace supports and accommodations, and empirical
knowledge of the impact of social and health insurance policies on job-
seeking behaviors.
State-Federal Vocational Rehabilitation Program
For the past 75 years, the primary source of publicly funded
employment-related services to improve the employment status of
disabled persons, especially those with significant disabilities, has
been the State-Federal Vocational Rehabilitation (VR) service program,
currently authorized under the Rehabilitation Act of 1973, as amended,
most recently in 1998. Funded at $2.2 billion in Fiscal Year 1998 in
Federal funds and a 22 percent State match for a total of about $2.7
billion annually, the program is implemented primarily as a case
management system at the State and local levels. The rehabilitation
counselors negotiate, on behalf of and in consultation with the
consumer, the purchase of a package of services, such as medical
interventions, and supports (e.g., assistive technology and licensure)
that will facilitate achievement of employment outcomes.
As noted by OSERS Assistant Secretary Judith Heumann in recent
testimony to Congress, ``As a group, persons who achieve an employment
outcome as a result of vocational rehabilitation services each year
show notable gains in their economic status,'' (Barriers Preventing
Social Security Recipients from Returning to Work, 1997). The
percentage of persons with disabilities reporting their income as their
primary source of support increased from 18 percent, at the time of
application to the VR program, to 82 percent at the time of exit from
the program (Barriers Preventing Social Security Recipients from
Returning to Work, 1997). The percentage with earned income of any kind
increased from 22 percent at entry to 92 percent at exit. The
percentage working at or above minimum wage rose from 15 to 80 percent.
Nevertheless, Federal policymakers, consumers, advocates, and
rehabilitation professionals remain concerned that persons with
disabilities often are excluded from full participation in the Nation's
labor force. In the past several years, for example, SSA has
experienced a very large increase in the number of persons qualifying
for SSI and SSDI, and the public costs of these cash benefits are
substantially increased by the addition of public support for
associated Medicare/Medicaid programs, Further, neither SSA nor the VR
system has experienced notable success in returning beneficiaries to
the labor force. The VR system, while accepting SSI/SSDI beneficiaries
for services at a proportionally higher rate than nonbeneficiaries,
typically has less success with this group, that is, relatively fewer
SSI/SSDI beneficiaries than nonbeneficiaries achieve an employment
outcome as a result of VR services.
One of the major changes in the employment sector over the past
three decades is the diversification of the laborforce. Workers with
disabilities are among the previously underrepresented groups entering
the labor market in increasing numbers with raised expectations and
legal protections for equal opportunity in employment. Even within the
disability community, there is great diversity in the subgroups who
have obtained or desire employment. It is very important that future
research and service programs demonstrate, in their design and
implementation, appropriate sensitivity to and adequate representation
of the range of cultural and disability subgroups. This issue should be
examined not merely as a response to the current consciousness about
multiculturalism but because the basic, implicit foundations of
vocational rehabilitation counseling were developed for a clientele
that, in terms of demographic characteristics, work-related experience,
and service needs, was quite different from today's rehabilitation
customers. Specifically, vocational rehabilitation techniques were
originally imported from the earlier established disciplines of
secondary vocational education and college counseling psychology.
Recipients of services from these disciplines tended to have mainstream
acculturation and tolerance for the competitive standards, verbal
testing, and guidance common in academic environments. Given the
cognitively compromised or socially disadvantaged status of many of
today's clients, additional scrutiny of the appropriateness and
adequacy of the strategies and tools for vocational rehabilitation
assessment, counseling, and training is imperative. Rehabilitation
counselors need new marketing strategies to reach out to prospective
employers to develop job opportunities for this diverse population of
persons with disabilities.
Community-Based Employment Services
NIDRR's research agenda concerning employment addresses, but is not
limited to, the State-Federal VR program administered by NIDRR's sister
agency, the Rehabilitation Services Administration (RSA). While the VR
program plays an important role, there is wide range of other Federal,
State, and local funding sources for, and providers of, employment
programs. These include approximately 7,000 community-based
rehabilitation programs (CRPs), which serve about 800,000 persons
daily, and are funded by VR and/or such diverse sources as the Job
Training Partnership Act (JTPA), Worker's Compensation, or private
insurance. Legislation such as the Workforce Investment Act and the
Workforce Consolidation Act further diversifies the sources of support.
The role of community rehabilitation programs in the overall
service delivery system may be enhanced even further if Federal
employment programs devolve to States and communities and if the intent
to increase consumer choice in the selection of service providers
becomes more widely implemented. To respond to these developments,
community rehabilitation programs must be prepared to offer a full
range of vocational services to an increasingly heterogenerous consumer
population. Moreover, as return-to-work programs that base provider
payments on
[[Page 45761]]
successful consumer outcomes are implemented, new relationships between
service providers and funding sources may emerge over the next few
years. These new relationships will require that community
rehabilitation programs adapt their current structure and operations in
significant ways.
A number of questions about how these changes may potentially
influence and impact the service delivery of community rehabilitation
programs are yet unanswered. For instance, the efficacy of different
models designed to maximize competitive employment outcomes for persons
with significant disabilities or with specific types of disabilities is
unknown. In addition, the impact of consumer choice on service delivery
models is unknown. Finally, whether new funding mechanisms will promote
increased competition and innovation in service delivery by community
rehabilitation programs is a major question. Gaining knowledge in these
important areas will allow validation of the assumptions upon which
pending reforms are predicated, and the shaping of the future direction
of initiatives to increase the numbers of persons with significant
disabilities who obtain and retain meaningful employment.
Employer Roles and Workplace Supports
Employers play a key role in deciding employment outcomes for
disabled persons through establishment of policies for recruitment,
screening, hiring, training, promoting, accommodating, and retaining
disabled individuals in the workforce. The provisions of Title I of the
ADA prohibit discrimination against qualified job applicants with
disabilities. Applicants are considered qualified if they can perform
the essential functions of a job with or without reasonable
accommodations. This statute creates duties for employers by requiring
them to make the employment process accessible, provide reasonable
accommodations, and focus on essential functions of jobs. These
employer responsibilities cover all aspects of the pre-employment and
post-employment phases. Through the requirements of Workers'
Compensation laws, bargaining unit agreements, and insurance
provisions, employers have additional obligations to employees who
become disabled.
Strategies to assist employers in meeting workplace obligations
include disability management and workplace supports. Disability
management is a term used to describe an array of support mechanisms
and benefits that employers use to maintain employment for disabled
workers. Workplace supports are programs or interventions provided in
the workplace to enable persons with disabilities to be successful in
securing and maintaining employment. Technology can play a major role
in making workplaces accessible and in enabling individuals with
disabilities to complete work tasks by adapting tools and processes.
Ergonomics, universal design, and assistive technology devices are all
strategies to enhance workplace performance. Typical supports include
accommodations such as job restructuring, worksite adaptations, and
improved accessibility. Supported employment is a specific approach to
improve employment outcomes for some persons with disabilities, usually
involving a job coach employed by a rehabilitation service provider to
provide on-the-job assistance.
Transition From School to Work
NIDRR, along with RSA, OSEP, and the Department of Education as a
whole, has a particular interest in the process by which disabled
students transition into a world of productive work, as opposed to
settling into a lifetime of dependency. This is a critical concern
because the transition period presents a distinct opportunity to help
students embark on a career, thus enhancing their community
integration, independence, and quality of life. The transition into
work occurs at many points: prevocational experiences, on-the-job
training, secondary vocational education or other secondary education
programs, and postsecondary education at technical institutions,
community colleges, or universities. These various transition points
present opportunities for research on strategies for success in
transferring from a learning environment to a work environment.
Research is ongoing regarding issues of postsecondary education for
persons with disabilities. This research shows that youth with
disabilities face tremendous difficulties in accessing postsecondary
education and making the transition from school to work. Most of the
Nation's institutions of higher education offer support services to
students with disabilities; however, this is less certain for other
types of postsecondary schools. When offered, services vary widely and
may include customized academic accommodation, adaptive equipment, case
management and coordination, advocacy, and counseling. A number of
issues have been raised in relation to delivery of these services.
Among these are issues of disclosure, accessibility of a range of
services, and extent and type of transition services needed to move
from school to work.
Directions of Future Employment-Related Research
Given the magnitude of changes in the nature and structure of the
world of work and possible changes in the characteristics of the
disabled population, NIDRR's employment-related research agenda for the
next five years must extend beyond prior research efforts to discover
mechanisms that will make the labor market more amenable to full
employment for persons with disabilities. That research agenda must
incorporate economic research, service delivery research, and policy
research, and most importantly, must relate to the context in which
employment outcomes are determined. Among the key policy issues that
will affect the evolution of this agenda are SSA reform; restructured
funding and payment mechanisms, including the use of vouchers; the
impact of workforce consolidation; radical restructuring of employment
training services at State and local levels; employment-related needs
of unserved and underserved groups; linkage of health insurance
benefits to either jobs or benefit programs; and transition from school
to work among youth with disabilities.
An important focus for research will be changes in the environment
(e.g., in the workplace, information technology, and telecommunications
and transportation systems) that will make work more accessible, along
with strategies for assisting individuals to achieve both the skill
levels and the flexibility required for full labor force participation
in the 21st century. Finally, as a departure from NIDRR's historical
emphasis on the service system and the quality of services, the agenda
calls for examination of economic issues (including benefits and costs
of various incentive plans) associated with employment of persons with
disabilities, labor force projections and analyses, and an increased
understanding of employer roles, perspectives, and motivational
systems.
The purpose of NIDRR's research in the area of employment is to:
(1) Assess the impact of economic policy and labor market trends on
the employment outcomes of persons with disabilities;
(2) Improve the effectiveness of community-based employment service
programs;
(3) Improve the effectiveness of State employment service systems;
(4) Evaluate the contribution of employer practices and workplace
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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
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academic-vocational integration, Tech Prep, career academies, work-
based learning, and