DEPARTMENT OF EDUCATION
CFRPART:National Institute on Disability and Rehabilitation Research; Notice
of Proposed Long-Range Plan for Fiscal Years 1999-2004
SUMMARY: The Secretary proposes a Long-Range Plan (LRP) 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: Comments must be received on or before November 25, 1998.
ADDRESSES: All comments concerning this proposed LRP should be addressed to
Donna Nangle, U.S. Department of Education, 600 Maryland Avenue, S.W., room
3418, Switzer Building, Washington, D.C. 20202-2645. Comments may also be
sent through the Internet: comments@ed.gov. You must include the term "Long-
Range Plan" in the subject line of your electronic message.
FOR FURTHER INFORMATION CONTACT: Donna Nangle. Telephone: (202) 205-5880.
Individuals who use a telecommunications device for the deaf (TDD) may call
the TDD number at (202) 205-2742. 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.
  Invitation to Comment: Interested persons are invited to submit comments
and recommendations regarding these proposed priorities. All comments
submitted in response to this notice will be available for public inspection,
during and after the comment period, in Room 3424, Switzer Building, 330 C
Street S.W., Washington, D.C., between the hours of 9:00 a.m. and 4:30 p.m.,
Monday through Friday of each week except Federal holidays.
SUPPLEMENTARY INFORMATION: This proposed LRP presents a five-year agenda
anchored in consumer goals and scientific initiatives. The proposed LRP 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.
  This proposed LRP 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.
  The authority for the Secretary to establish a LRP is contained in sections
202(h) of the Rehabilitation Act of 1973, as amended (29 U.S.C. 762(h).
Electronic Access to This Document
  Anyone may view this document, as well as all other Department of Education
documents published in the Federal Register, in text or portable document
format (pdf) on the World Wide Web at either of the following sites:
 
http://ocfo.ed.gov/fedreg.htm
http://www.ed.gov/news.html
  To use the pdf you must have the Adobe Acrobat Reader Program with Search,
which is available free at either of the preceding sites. If you have
questions about using the pdf, call the U.S. Government Printing Office at
(202) 512-1530 or, toll free at 1-888-293-6498.
  Anyone may also view these documents in text copy only on an electronic
bulletin board of the Department. Telephone: (202) 219-1511 or, toll free, 1-
800-222-4922. The documents are located under Option G--Files/Announcements,
Bulletins and Press Releases.
 
  Note: The official version of this document is the document published in
the Federal Register.
  Applicable Program Regulations: 34 CFR Parts 350 and 353.
 
  Program Authority: 29 U.S.C. 760-764.
 
  Dated: October 19, 1998.
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 and Training
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.
  Note 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 founding NIDRR, Congress recognized both the opportunities for
technological and scientific advances to improve the lives of individuals
with disabilities and the need for a comprehensive and coordinated approach
to research, development, demonstration, information dissemination, and
training. The Rehabilitation Act of 1973, as amended, (with significant
changes in 1992), 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 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 Long-Range 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:
  Note 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 Long-Range 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 (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 with 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 work days, 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
development of new materials for 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,
wheelchair 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.
  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 now equipped
with decoders that allow people with hearing loss to access most programs. In
addition, ergonomic research undergirds the development of workplace designs
and the standards for building codes, consumer products, and the
telecommunications infrastructure. These advances have been instrumental in
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
practitioners" (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
consensus among investigators of a phenomenon that defines the legitimate
problems and methods of a research field. NIDRR posits that the paradigm in
this case applies not to a single field, but to a single phenomenon--
"disability"--as it is investigated by multiple disciplinary fields.
  The disability paradigm that undergirds NIDRR's research strategy for the
future maintains that disability is a product of an interaction between
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.
                       Table 1.--Contrast of Paradigms
 
                                "Old" Paradigm           "New" Paradigmq
 
 Definition of Disability  An individual is limited  An individual requires
                            by his/her impairment     an accommodation to
                            or condition              perform functions
                                                      required to carry out
                                                      life activities.
 Strategy to Address       Fix the individual,       Remove barriers, create
  Disability                correct the deficit       access through
                                                      accommodation and
                                                      universal design,
                                                      restore function,
                                                      maintain wellness and
                                                      health.
 Method to Address         Provision of medical,     Provision of supports,
  Disability                vocational, or            e.g., assistive
                            psychological             technology, personal
                            rehabilitation services   assistance services,
                                                      job coach.
 Source of Intervention    Professionals,            Peers, mainstream
                            clinicians, and other     service providers,
                            rehabilitation service    consumer information
                            providers                 services.
 Entitlements              Eligibility for benefits  Eligibility for
                            based on severity of      accommodations seen as
                            impairment                a civil right.
 Role of Disabled          Object of intervention,   Consumer or customer,
  Individual                patient, beneficiary,     empowered peer,
                            research subject          research participant.
 Domain of Disability      A medical "problem"       A socio-environmental
                                                      issue involving
                                                      accessibility,
                                                      accommodations, and
                                                      equity.
 
 Note: Adapted from materials prepared for this Long-Range Plan by Gerben
 DeJong and Bonnie O'Day.
 
  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.3
  Note 3 The ICIDH is a manual issued by the World Health Organization (WHO)
in 1980 as a tool for the classification of the consequences of disease,
injury, and disorder, and for analysis of health-related issues.
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 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. 705(20)(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 who requires an accommodation or intervention rather than as a
person with a condition or impairment. 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).
                  Table 2.--Concepts in Models of Disability
 
          ICIDH                 Nagi/1991 IOM                 NCMRR
 
 Disease--Something        Active pathology--        Pathophysiology--
  abnormal within the       Interruption or           Interruption or
  individual; etiology      interference of normal    interference with
  gives rise to change in   bodily processes or       normal physiological
  structure and             structures                and developmental
  functioning of the body                             processes or structure.
 Impairment--Any loss or   Impairment--Anatomical,   Impairment--Loss or
  abnormality of            physiological, mental     abnormalities of
  psychological,            or emotional              cognitive, emotional,
  physiological, or         abnormalities or loss     physiological, or
  anatomical structure or                             anatomical structure or
  function at the organ                               function, including
  level                                               losses or
                                                      abnormalities, not
                                                      those attributable to
                                                      the initial
                                                      pathophysiology.
 Disability--Any           Functional limitation--   Functional limitation--
  restriction or lack       Restriction or lack of    Restriction or lack of
  (resulting from an        ability to perform an     ability to perform an
  impairment) of ability    action or activity in     action in the manner or
  to perform an activity    the manner or within      within the range
  in the manner or range    the range considered      consistent with the
  considered normal for a   normal that results       parts of an organ or
  human being               from impairment           organ system.
 Handicap--A disadvantage  Disability--Inability or  Disability--Inability or
  resulting from an         limitation in             limitation in
  impairment or             performing socially       performing tasks,
  disability that limits    defined activities and    activities, and roles
  or prevents fulfillment   roles expected of         to levels expected
  of a normal role          individuals within a      within the physical and
  depending on age, sex,    social and physical       social context.
  and sociocultural         environment
  factors
                                                     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.
 
  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;"
  (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, an 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) and the Survey of Income and
Program Participation (SIPP), 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 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 nearly 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.
           Table 3.--Degree of Activity Limitation Due to Chronic
              Conditions, by Demographic Characteristics: 1994
 
                                                       Limited in
                                           Unable to   amount or    Limited,
                      All                   carry on    kind of    but not in
                    persons       With       major       major       major
                      (in       activity    activity    activity    activity
 Characteristic    thousands)  limitation  (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
   area (MSA)         203,079        14.3         4.4         5.5         4.5
    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.
 
  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. 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.
  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
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.
  As new causes of disabilities emerge, the new paradigm of disability
clearly provides a progressive approach to successfully 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 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 illness 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 or limited
(18 percent) 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).
  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 Supplemental 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 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
educations, and 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.
  It is also true that, while the presence of a disability may have
deleterious effects on individuals and families, society increasingly is able
to assist persons with disabilities in their need 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, Keynote
Address "Employment Post the Americans with Disabilities Act," National Press
Club, Washington, DC, November 17, 1997).
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 disincentives 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). Disparities in employment rates and earnings are even greater
for disabled individuals from minority backgrounds and those with 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 led 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.
  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 of 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-tier 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 a 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
heterogeneous consumer population. Moreover, as return-to-work programs that
base provider payments on 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. Some
workplace supports may be provided through formal mechanisms established by
vocational rehabilitation programs, such as supported employment, in which a
job coach who works with the employee provides on-site assistance. Other
supports include accommodations such as job restructuring, worksite
adaptations, and improved accessibility.
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 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
macroeconomic 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.
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; and
  (7) 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 institutions 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
academic-vocational integration, Tech Prep, career academies, work-based
learning, and rigorous preparation in terms of critical thinking and
communication skills, are accessible to and effective with youth who have
disabilities;
  (3) Identification of systemic and environmental barriers to full labor
force participation;
  (4) Assessment of whether innovations in school-to-work practices are
accessible to youth with disabilities, and determination of the impact of
these practices on employment outcomes; and
  (5) Assessment of the efficacy of employment and transition services for
youth from diverse backgrounds and new disability groups.
  Future employment research will provide information to develop new VR
approaches for helping disabled individuals become competitive in the
changing, global labor market. These new methods will focus on provision of
culturally relevant services for clients, attainment of competitive job
skills by clients, and the application of accommodation in the workplace.
Chapter 4: Health and Function
 
  "To be healthy does not mean to be free of disease; it means that you can
function, do what you want to do, and become what you want to become" (Rene
Jules Dubos, 1901-1982).
Overview
 
  Maximizing health and function is critical to maintaining independence for
persons with disabilities. Health care for persons with disabilities
encompasses access to care for routine health problems, participation in
health promotion and wellness activities, and access to appropriate specialty
care, including medical rehabilitation. Medical rehabilitation is the
systematic application of modalities, therapies, and techniques to restore,
improve, or replace impaired human functioning. It also encompasses
biomedical engineering, that is, the use of engineering principles and
techniques and biological knowledge to advance the functional ability of
persons with disabilities.
  Health care and medical rehabilitation services operate largely within the
constraints imposed by market forces and government regulations. In recent
years, significant changes have occurred in health care delivery and
reimbursement. Various forms of managed care have become the predominant mode
of organizing and delivering health care in much of the private sector.
Medicaid and Medicare also have adopted managed care strategies for providing
health care to many recipients. In theory, managed care uses case
coordination to contain costs by limiting access to "unnecessary" health
care, particularly specialty services and hospitalization. Individuals with
disabilities have expressed concern that managed care approaches may limit
their access to medical rehabilitation specialists, goods, and services. In
addition to a market-driven shift to managed care, other related changes have
occurred, including shortened length of stays in inpatient rehabilitation
facilities and the development of subacute rehabilitation providers.
Considerable consolidation also has occurred within the medical
rehabilitation industry and has further affected the availability and
delivery of services. There also has been a new emphasis on developing
performance measures that incorporate concepts of quality, functional
outcomes, and consumer satisfaction. These measures are being used to guide
purchasing and accrediting decisions within the health care system.
  During the next five years, NIDRR plans to fund research in a number of
broad areas that link health status and functional outcomes to health care
and medical rehabilitation. In addition, NIDRR will support research to
continue development of new treatments and delivery mechanisms to meet the
rehabilitation, functional restoration, and health maintenance needs of
individuals with disabilities. This research will occur at the individual and
the delivery system levels. In this section, the discussion of general health
care and medical rehabilitation will address issues at both levels.
Health Care
 
  The goal of health care for individuals with disabilities is attaining and
maintaining health and decreasing rates of occurrence of secondary conditions
of disability. Individuals with disabilities use more health care services,
accumulate more hospital days, and incur higher per capita medical
expenditures than do nondisabled persons. Persons with no activity
limitations reported approximately four physician contacts per year; this
figure was doubled for those who had some activity limitation, was five times
as high for those unable to perform major life activities, and was seven
times as great for those needing help with instrumental activities of daily
living (IADLs) (LaPlante, 1993). Understanding the relationship between
disability and health has implications for the public health agenda and the
application of primary disease prevention strategies to the health of persons
with disabilities.
  In the past, the health needs of persons with disabilities often have been
conflated with medical rehabilitation needs. The recognition that persons
with disabilities require routine health care or access to health maintenance
and wellness services is relatively new. How best to meet these needs
requires substantial new research. At the individual level, persons with
disabilities need providers and interventions that focus on their overall
health, taking disability and environmental factors into consideration.
Concern about the health of the whole person is the focus at this level, in
recognition that an individual is more than a disability and deserves access
to the health services generally available to the nondisabled population. At
the system level, study of the organization and financing of health services
must include analysis of impacts on persons with disabilities. Ameliorating
the primary condition, preventing secondary conditions and co-morbidities,
maximizing independence and community integration, and examining the impact
of physical barriers and societal attitudes on access to health and medical
rehabilitation services are critical issues at each level of focus.
Health Care at the Individual Level
 
  Although persons with disabilities have higher health care utilization
rates than the general population, having a disability does not mean that a
person is ill. People with disabilities increasingly are demanding
information about and access to programs and services aimed at promoting
their overall health, including access to routine health care, preventive
care, and wellness activities. This includes primary care and, for women,
access to gynecological care. For children, this means access to appropriate
pediatric care. In clinical settings, these demands require development of
disability-sensitive protocols for proper nutrition, exercise, health
screening, and treatment of nondisability-related illnesses and conditions.
NIDRR is committed to supporting research to improve the overall health of
persons with disabilities.
Health Care at the Systems Level
 
  Persons with disabilities must have access to, and satisfaction with, an
integrated continuum of health care services, including primary care and
health maintenance services, specialty care, medical rehabilitation, long-
term care, and health promotion programs. Models for organizing, delivering,
and financing these services must accommodate an overall health care system
that is undergoing tremendous change. Issues of gatekeeper roles, carve-outs,
risk-adjusted rate-setting, and service mix are factors for assessment in a
context of managed care approaches that balance care coordination with cost
control strategies. At issue for all people is whether cost control
strategies result in barriers to needed care; and, for persons with
disabilities, whether access to specialty care, particularly medical
rehabilitation services, is limited. In the current cost-cutting and
restrictive climate, it is important to assure that new service
configurations preserve equity for persons with disabilities by providing for
their unique needs.
Medical Rehabilitation
 
  Medical rehabilitation addresses both the primary disability and secondary
conditions evolving from the initial impairment or disability. Medical
rehabilitation also teaches the individual to overcome the barriers in the
environment. Medical rehabilitation includes medical and bioengineering
interventions, therapeutic modalities, and community and family
interventions.
Medical Rehabilitation at the Individual Level
 
  NIDRR-funded research has improved medical rehabilitation treatment in
areas such as spinal cord injury, traumatic brain injury, stroke, and other
leading causes of disability. This research must be expanded to include
emerging disabilities. Of special concern are new causes of disability such
as violence, which has emerged in recent years as a significant precipitator
for new disability conditions. In addition, future medical rehabilitation
research must be sensitive to cultural difference and must recognize the
impact of an individual's environment on functional outcomes. Another
important research focus will be examining how technological improvements
enhance the ability of biomedical engineering to help people with
disabilities regain, maintain, or replace functional ability.
  Additionally, an urgent need exists for the development of more effective
outcomes measurement tools to test the usefulness of new medical
rehabilitation interventions and products. These measurement tools must
assess the individual's response to medical rehabilitation interventions and
account for technology that enhances mobility, independence, and quality of
life. Outcomes must be measured not just for the duration of treatment but
also over the long term.
  Another issue of continued importance to medical rehabilitation is the
prevention and treatment of secondary conditions. Secondary conditions result
directly from the primary disabling condition and may have significant
effects on the health and function of persons with disabilities. Examples of
secondary conditions may include depression, bladder and skin problems,
respiratory problems, contractures or spasticity, fatigue, joint
deterioration, or memory loss. Other health conditions such as cardiac
problems, autoimmune diseases, or cancer may not always derive directly from
the original disability, but may require special preventive efforts or care
interventions because of a preexisting disability.
Medical Rehabilitation at the Systems Level
 
  Cost containment strategies inherent in managed care may constrain access
to medical rehabilitation. Thus, it is more important than ever to
demonstrate the cost effectiveness of treatments. Research on medical
rehabilitation outcomes is critical to establishing the need for, and
assuring access to, medical rehabilitation within the health care delivery
system. Previously, NIDRR has initiated research activities to develop
methods for measuring function and assessing rehabilitation outcomes, and for
measuring the cost and effectiveness of various rehabilitation modalities and
delivery mechanisms. These areas will continue to be important foci of
NIDRR's future medical research program. Research must continue to assess the
impact of changes at the system level on the rehabilitation outcomes of
individuals. In addition, providing care in nonacute settings requires
development of additional capacity that includes training practitioners for
more independent work in the community. NIDRR research must contribute to
building this new capacity.
  The purpose of NIDRR's research in the area of health care and medical
rehabilitation is to:
  (1) Identify and evaluate effective models of health care for persons with
disabilities;
  (2) Develop models to promote health and wellness for persons with
disabilities;
  (3) Examine the impact of changes in the health care delivery system on
access to care;
  (4) Evaluate medical rehabilitation interventions that maximize physical
function for individuals with disabilities, taking into account aging,
environment, emerging disabilities, and changes in the health services
delivery system;
  (5) Identify and evaluate medical rehabilitation interventions that will
help disabled individuals maintain health, through prevention and
amelioration of secondary conditions and co-morbidities, and through
education;
  (6) Improve delivery of medical rehabilitation services to persons with
disabilities; and
  (7) Evaluate the health and medical rehabilitation needs of persons whose
impairments are attributed to newly recognized causes or whose conditions are
newly recognized as disabilities, for example, disability relating to acts of
violence or to conditions of children with chronic diseases like asthma.
Future Research Priorities for Health Care and Medical Rehabilitation
Research on Effective Methods of Providing a Continuum of Care, Including
Primary Care and Long-Term Care, to Persons With Disabilities
 
  In recent years, a number of different models of providing routine health
care for persons with disabilities have emerged. For example, there are
medical rehabilitation programs that have developed primary care clinics; and
there are other programs where primary care providers have added medical
rehabilitation consultants to advise them on care of persons with
disabilities. The efficacy of these models is not yet known, especially their
impact on the overall well-being of their consumers. There has been some
research on long-term care models, especially those that provide community-
based services, including personal assistance; however, research questions
remain regarding optimal models of long-term care. Specific priorities
include:
  (1) Identification of effective models of primary and long-term care across
disability populations including emerging disability groups;
  (2) Evaluation of the impact of primary and long-term care service delivery
models on independence, community integration, and overall health outcomes,
including occurrence of secondary conditions and co-morbidities; and
  (3) Collection and analysis of longitudinal data on health care utilization
by persons with disabilities, to identify trends, outcomes, and consumer
satisfaction.
Research on Application of Wellness and Health Promotion Strategies
 
  NIDRR will support research to develop wellness and health promotion
strategies, incorporating all disability types and all age groups. Specific
research priorities include:
  (1) Identification and evaluation of models to promote health and wellness
for persons with disabilities in mainstream settings where possible. These
will include nutrition, exercise, disease prevention, and other health
promotion strategies. A particular focus will be placed on prevention and
treatment of secondary conditions and on the needs of emerging disability
populations, including persons aging with a disability;
  (2) Evaluation of the impact of health status on independence, community
integration, quality of life, and health care expenditures; and
  (3) Development of guidelines that establish protocols for reaching or
maintaining appropriate levels of fitness for persons with varying functional
abilities.
Research on the Impact of the Evolving Health Service Delivery System on
Access to Health and Medical Rehabilitation Services
 
  NIDRR anticipates that the health service delivery system will continue to
evolve as the marketplace responds to rising costs and as policymakers
respond to public concerns about access to care. Specific research priorities
include:
  (1) Evaluation of the impact of changes at the health system level, for
example, financing and regulatory changes, on access to the continuum of
health care services, including medical rehabilitation; and
  (2) Evaluation of the impact of triage and case management strategies on
health status and rehabilitation outcomes.
Research on Trauma Rehabilitation
 
  Research to improve the restoration and successful community living of
individuals with burns and neurotrauma such as spinal cord injury, brain
injury, and stroke, has long been an important component of NIDRR's program.
Specific research priorities include:
  (1) Identification of methods to minimize neurological damage, improve
behavioral outcomes, and enhance cognitive abilities; and
  (2) Identification of effective collaborative research opportunities, using
data generated by the model systems.
Research on Progressive and Degenerative Disease Rehabilitation
 
  Research to maintain and restore function and independent lifestyles for
individuals with multiple sclerosis, arthritis, and neuromuscular diseases is
a key element of medical rehabilitation research. Specific research
priorities include:
  (1) Identification and evaluation of methods to maintain function for
persons with these conditions;
  (2) Identification of effective health promotion strategies;
  (3) Evaluation of strategies to minimize the impact of secondary
conditions; and
  (4) Development and evaluation of health care and rehabilitation medicine
supports to facilitate community integration and independent living outcomes.
Research on Birth Anomalies and Sequelae of Diseases and Injuries
 
  Medical and technological interventions to maintain and restore function in
persons with cerebral palsy, spina bifida, post-polio syndrome, and other
long-standing conditions are an important part of rehabilitation. Specific
research priorities include:
  (1) Development and evaluation of physical therapy techniques, respiratory
management techniques, exercise regimens, and other rehabilitative
interventions aimed at maximizing functional independence;
  (2) Development and evaluation of supports to facilitate community
integration and independent living outcomes, and;
  (3) Investigation of factors that lead to disability and loss of full
participation in society following disease or injury.
Research on Secondary Conditions
 
  Prevention and treatment of secondary conditions are critical to preserving
health and containing health care costs of persons with disabilities.
Specific research priorities include:
  (1) Development of clinical guidelines to identify at-risk individuals and
to involve consumers in regimens to prevent secondary conditions;
  (2) Identification and evaluation of methods of preventing and treating
secondary conditions across impairment categories; and
  (3) Investigation of the interaction among secondary conditions,
impairments, and aging.
Research on Emergent Disabilities
 
  Explorations of the impact of disabilities resulting from new causes or
expanding disability definitions will be of increasing significance to
rehabilitation medicine. Emergent conditions may include such things as
environmental illnesses, repetitive motion syndromes, autoimmune
deficiencies, and psychosocial and behavioral conditions related to poverty
and violence. Specific research priorities include:
  (1) Identification and evaluation of the need for health and medical
rehabilitation services to address emerging disability conditions;
  (2) Identification and evaluation of effective models by which health and
medical rehabilitation providers can meet the needs of persons with emerging
disabilities; and
  (3) Development of models to predict future emerging disability
populations.
Research on Aging With a Disability
 
  Advances in acute medical care for persons with disabilities means that, as
the population ages, many disabled persons will live longer and may develop
the serious, chronic conditions common to many aging populations. Examples of
these chronic conditions include heart disease, diabetes, cancer, pulmonary
diseases, arthritis, and sensory losses. Specific research priorities
include:
  (1) Determination of the implications of aging with a disability on access
to routine health care, medical rehabilitation services, and services that
support community integration;
  (2) Investigation of the impact of aging on disabilities and the impact of
various disabilities on the aging process;
  (3) Investigation of the relationship between age-related disability and
employment; and
  (4) Analysis of the effect of longer lifespan on the durability and
effectiveness of previously demonstrated interventions and technologies.
Research on Rehabilitation Outcomes
 
  NIDRR's prior research efforts have developed new rehabilitation techniques
for a number of disability groupings and also have developed and tested
comprehensive model systems, home and community-based services, and peer
services to improve rehabilitation outcomes. With the renewed emphasis on
performance and outcomes and with increasing economic constraints generated
by changes in the health services delivery system, rehabilitation medicine
needs to document the impact of its services. Specific research priorities
include:
  (1) Expansion of outcomes evaluation approaches, beyond short-term
rehabilitation studies, to include outpatient and long-term follow-up
information;
  (2) Development of outcomes measures that include measures of environmental
barriers;
  (3) Evaluation of methods that translate outcomes findings into quality
improvement strategies; and
  (4) Analysis of barriers and incentives to consistent use of health and
medical rehabilitation outcomes measures in payer and consumer choice models.
Research on Changes in the Medical Rehabilitation Industry
 
  The medical rehabilitation industry is undergoing an unprecedented level of
consolidation, with unknown consequences for access and flexibility. The
industry has undergone significant changes in service sites with the move
from inpatient to post-acute, outpatient, and community-based services.
Outcomes measurement and quality assurance initiatives are increasingly used
in evaluating medical rehabilitation services. Specific research priorities
include:
  (1) Investigation of the impact of financing and other market forces on the
medical rehabilitation industry, including service delivery patterns and
treatment modalities; and
  (2) Identification and evaluation of the impact of changes at the medical
rehabilitation industry level on access and outcomes for persons with
disabilities.
  A major research challenge will be to integrate research on the efficacy of
interventions to improve outcomes with research on the impact of changes in
the health care delivery system. A second overarching objective will be to
relate medical rehabilitation and health care research to other changes,
including the new paradigm of disability, the emerging universe of
disability, and participatory research by persons with disabilities.
Chapter 5: Technology for Access and Function
 
  "For Americans without disabilities, technology makes things easier. For
Americans with disabilities, technology makes things possible" (Mary Pat
Radabaugh, 1988).
Overview
 
  Technology has been defined as the system by which a society provides its
members with developments from science that have practical use in everyday
life. Today, technology plays a vital role in the lives of millions of
disabled and older Americans. Each day, people with significant disabilities
use the products of two generations of research in rehabilitation and
biomedical engineering to achieve and maintain maximum physical function, to
live in their own homes, to study and learn, to attain gainful employment,
and to participate in and contribute to society in meaningful and resourceful
ways. It is more than coincidence that these remarkable advances have
occurred during the period in which Federal funds have supported research,
development, and training in rehabilitation and biomedical engineering.
  In planning the future of rehabilitation engineering research, NIDRR and
its constituents in the consumer, service, research, and business communities
will continue to identify flexible strategies to address emerging issues and
technologies, to promote widespread use of research findings, and to maximize
the impact of NIDRR programs on the lives of persons with disabilities. NIDRR
is particularly well positioned to continue its leadership in rehabilitation
engineering research, since NIDRR locates rehabilitation engineering research
on a continuum that includes related medical, clinical, and public policy
research; vocational rehabilitation and independent living research; research
training programs; service delivery infrastructure projects; and extensive
consumer participation.
  The Institute supports engineering research on technology for individuals
and on systems technology. For example, NIDRR has supported hearing aid and
wheelchair research on the individual level, and telecommunications,
transportation, and built environment research at the systems or public
technology level. NIDRR also supports research on ergonomics and other
interface problems related to the compatibility of various technologies, such
as hearing aids and cellular telephones.
  Technological innovations benefit the individual at the individual level
and at the systems level. At the individual level, assistive technology
enhances function and at the systems, or public technology level, technology
provides access that enhances community integration and equal opportunity.
Much of the assistive technology for disabled individuals falls into the
category of "orphan" technology because of limited markets; frequently this
technology is developed, produced, and distributed by small businesses.
Often, technology on the systems level involves large markets and large
businesses. Access to technology can be increased by incorporating principles
of universal design into the built environment, information technology and
telecommunications, consumer products, and transportation.
Assistive Technology for Individuals
 
  In 1990, more than 13.1 million Americans, about 5 percent of the
population, were using assistive technology devices to accommodate physical
impairments, and 7.1 million persons, nearly 3 percent of the population,
were living in homes specially adapted to accommodate impairments. While the
majority of persons who use assistive technology are elderly, children and
young adults use a significant proportion of the devices, such as foot
braces, artificial arms or hands, adapted typewriters or computers, and leg
braces (LaPlante, Hendershot, & Moss, 1992).
  Assistive technology includes devices that are technologically complex,
involving sophisticated materials and requiring precise operations--often
referred to as "high tech"--and those that are simple, inexpensive, and made
from easily available materials--commonly referred to as "low tech."
Scientific research in both high tech and low tech areas will serve the
consumer need for practical items that are readily available and easily used.
Low-tech devices, for example, are widely used by older persons with
disabilities to compensate for age-related functional losses. The importance
of the development of both types of assistive technologies is found in the
words of one engineer who stated, "it is not high tech or low tech that is
the issue; it is the right tech." NIDRR research must be able to identify the
most appropriate technological approach for a given application, and continue
to develop low tech as well as high tech solutions.
  Given the current trend toward more restrictive utilization of health care
funds in both public and private sectors, rehabilitation engineering research
must justify consumer or third party costs in relation to the benefits
generated for consumers. These benefits may be in the form of long-term cost
savings and consumer satisfaction. Equally important, rehabilitation
engineers must develop products that are, in addition to being safe and
durable, marketable and affordable. End-product affordability is important
not only in meeting consumer needs but also in creating the market demand
that will encourage manufacturers to enter production.
Systems Technology: Universal Design and Accessibility
 
  As disabled persons enter the mainstream of society, the range of
engineering research has broadened to encompass medical technology,
technology for increased function, technology that interfaces between the
individual and mainstream technology, and finally, public and systems
technology. Key concepts of universal design are interchangeability,
compatibility of components, modularity, simplification, and accommodations
of a broad range of human performance capabilities. Universal design
principles can be applied to the built environment, information technology
and telecommunications, transportation, and consumer products. These
technological systems are basic to community integration, education,
employment, health, and economic development. The application of universal
design principles during the research and development stage would incorporate
the widest range of human performance into technological systems. Universal
design applications may result in the avoidance of costly retrofitting of
systems in use and possible reduction in need for orphan products.
Technology Transfer
 
  The Institute's emphasis on applied research challenges NIDRR and its
researchers to find effective ways of ensuring technology transfer--transfer
of ideas, designs, prototypes, or products, from the basic to the applied
research environment, to the market, and to other research endeavors. Market
size, the potential for manufacturability, intellectual property rights,
patents, and regulatory approval are considerations in the conceptualization
and design phase of research efforts. NIDRR-funded Rehabilitation Engineering
Research Centers (RERCs) consider potential industry partners in selecting
research projects that will result in marketable products.
  Issues of orphan technology are key to the process of technology transfer,
with small markets that have limited capital occasioning the need for
subsidies, guaranteed financing for purchases, or other incentives for
producers. Future technology transfer efforts at NIDRR will explore better
linkages to the Small Business Innovative Research (SBIR) program, a
government-wide program intended to support small business innovative
research that results in commercial products or services that benefit the
public. Innovativeness and probability of commercial success are both
important factors in SBIR funding decisions.
Building a Research Agenda
 
  Future rehabilitation engineering research agendas must incorporate several
cross-cutting issues, including small markets, and outcomes measures. In
addition, research must continue to result in improvements in the functional
capacities of individuals with sensory, mobility, and manipulation
impairments. Telecommunications and computer access offer significant
potential to improve participation of persons with disabilities in all facets
of life. Continuous innovations in these areas require that the needs of
persons with various disabilities be recognized and accommodated. Finally,
access to the built-environment remains a critical need for persons with
disabilities, and thus requires ongoing research.
  The purpose of NIDRR's research in the area of technology is to:
  (1) Develop assistive technology that supports persons with disabilities to
function and live independently;
  (2) Develop biomedical engineering innovations to improve function of
persons with disabilities;
  (3) Promote the concept and application of universal design;
  (4) Ensure access of disabled persons to telecommunications and information
technology, including through the application of universal design principles;
  (5) Ensure the transfer of technological developments to other research
sectors, to production, and to the marketplace;
  (6) Identify business incentives for manufacturers and distributors;
  (7) Remove barriers and improve access in the built environment;
  (8) Identify the best methods of making technology accessible to persons
with disabilities;
  (9) Develop rehabilitation engineering science, including a theoretical
framework to advance empirical research; and
  (10) Raise the visibility of engineering and technological research for
persons with disabilities as a consideration in national science and
technology policy.
Future Research Priorities for Technology
 
  NIDRR's research priorities in engineering and technology will help improve
functional outcomes and access to systems technology in the areas of sensory
function, mobility, manipulation, information communication, and the built
environment, and promote business involvement and collaboration.
  Research to Improve or Substitute for Sensory Functioning. Sensory research
is directed toward the problems faced by individuals who have significant
visual, hearing, or communication impairments. These major conditions have
been the focus of a long tradition of engineering research emphasizing both
expressive communication and the receipt of information. Research priorities
in the area of sensory functioning will focus on enhancing hearing,
addressing visual impairments, and accommodating communication disorders. In
the area of hearing impairments, specific research priorities include:
  (1) Development and evaluation of hearing aids that exploit the potential
of digital technology, use advanced signal processing techniques to enhance
speech intelligibility, attain a better fit, and insure compatibility with
telecommunications systems and information technology;
  (2) Evaluation of the application of digital processing techniques to
assistive listening systems;
  (3) Evaluation of modern methods of sound recognition in alerting devices;
and
  (4) Development of interfaces for assessment of automatic speech
recognition systems.
  In the area of vision impairments, specific research priorities include:
  (1) Identification and evaluation of methods to enhance accessibility of
visual displays;
  (2) Development and evaluation of graphical user interface technologies for
various document and graphic processing systems; and
  (3) Improvement of signage in public facilities.
  In the area of communication impairments, specific research priorities
include:
  (1) Identification and evaluation of technologies to enhance the
communication abilities of persons who are deaf-blind; and
  (2) Assessment of the capacity of research in cognitive science, artificial
intelligence, biomechanics, and human/computer interaction to improve the
rate, fluency, and use of communication aids.
Research To Enhance Mobility
 
  Mobility research is directed toward the problems associated with moving
from place to place. Mobility can be enhanced by accessible public
transportation; modified privately owned vehicles; wheeled mobility devices
such as wheelchairs; orthoses, and prostheses; and barrier removal. In the
area of enhancing mobility, specific research priorities include:
  (1) Development, evaluation, and commercialization of wheelchair designs
that reduce user stress, repetitive motion injury, and other secondary
disabilities, while improving safety, ease of maintenance, and affordability;
  (2) Revision and dissemination of wheelchair standards;
  (3) Development and evaluation of techniques to assist consumers and
providers in selecting and fitting wheelchairs and wheelchair seating
systems;
  (4) Identification of a theoretical framework of gait and other aspects of
ambulation;
  (5) Development and evaluation of advanced prosthetic and orthotic devices,
as well as footwear and other ambulation devices;
  (6) Development and evaluation of methods to improve person-device
interfaces, post-surgical management and fitting, and materials used in bio-
engineering applications; and
  (7) Development of devices to assist with ADLs for persons with
disabilities and their caregivers.
Research to Improve Manipulation Ability
 
  The manipulation area includes research directed toward restoring
functional independence for persons with limited or no use of their hands.
This encompasses upper extremity prosthetic and orthotic devices, and novel
methods of upper extremity rehabilitation. Issues of weight, durability, and
reliability remain challenges in this field.
  Repetitive motion injury is emerging as one of the most serious problems
among workers. While there have been a number of ergonomic devices introduced
to address this problem, the incidence of this condition continues to
increase. In the area of improvement of manipulation, specific research
priorities include:
  (1) Identification of methods to improve the design of and achieve multi-
functional control for hand/arm prosthetic technology;
  (2) Development and evaluation of surgical approaches that increase
functionality; and
  (3) Development and evaluation of devices and techniques to minimize the
onset of repetitive motion injuries and to rehabilitate those with the
condition.
Research to Improve Accessibility of Telecommunications and Information
Technology
 
  Computerized information kiosks, public web sites, electronic building
directories, transportation fare machines, ATMs, and electronic stores are
just some current examples of rapidly proliferating systems that face people
living in the modern world. Research priorities will include development and
evaluation of techniques to make such computerized information systems
accessible to persons with a range of disabilities.
  The information technology and telecommunications industry trend away from
standardized operating systems and monolithic applications and toward net-
based systems, applets, and object-oriented structures has significant
implications for accessibility for some persons with disabilities.
Maintaining accessibility to the Internet and World Wide Web is also a
formidable challenge facing individuals with disability.
  Another concern in telecommunications is electromagnetic interference from
the rapidly proliferating wireless communication systems (e.g., beepers,
cellular telephones) and other electronic devices using digital circuitry
(e.g., computers, fluorescent light controllers). This interference is
complicating the use of assistive listening devices. Moreover, interference
caused by over-use of spectrum is presenting problems in the use of FM
Assistive Listening systems.
  During the past decade, virtual reality techniques, originally developed by
NASA and the military for simulation activities, have been applied in a
number of other fields, including architecture and health. Applications can
be found in telerobotic systems, sign language recognition devices,
intelligent home systems, and aids for persons with visual impairments. There
has been some beginning research on the use of virtual reality as an
evaluation and therapy tool.
  Telecommunications also emerges in other important areas of the lives of
persons with disabilities. In a managed care approach to health care,
individuals are discharged from acute rehabilitation hospitals earlier than
in the past. Because of the decreased length of stay, there is less time for
consumers to learn how to manage their conditions. One promising option for
ameliorating these effects is telemedicine or "telerehabilitation."
Telerehabilitation may allow for distance monitoring of chronic conditions
and for monitoring consumer compliance and progress.
  In the area of telecommunications and information technology, specific
research priorities include:
  (1) Development and evaluation of fine motor skill manipulation interfaces,
telecommunication interfaces, and analog to digital communication
technologies;
  (2) Identification of methods to address issues of accessibility through
Internet communications;
  (3) Development and evaluation of methods for reducing emerging forms of
interference that affect hearing aids, telephones, and other communication
devices;
  (4) Determination of the efficacy of virtual reality techniques in both
rehabilitation medicine and in applications that affect the daily lives of
persons with disabilities; and
  (5) Identification of appropriate telecommunications strategies for use in
distance follow-up to rehabilitation treatment.
Research To Improve Access to the Built Environment
 
  The built environment includes public and private buildings, tools and
objects of daily use, and roads and vehicles, any of which can be accessible
or disabling. Architects, industrial designers, planners, builders, and
engineers are among the professionals that create this environment. In the
area of access to the built environment, specific research priorities
include:
  (1) Analysis of human factors;
  (2) Development and evaluation of modular design;
  (3) Determination of best methods of disseminating information on universal
design;
  (4) Development and evaluation of compatible interfaces; and
  (5) Development and promulgation of design standards.
  Future engineering research also must recognize the changing roles of
consumers, whose participation in research is vital, and the role of
assistive technology industries, whose technical capabilities and needs for
product development and research are changing. Small businesses, the engine
of the orphan technology industry, often cannot support sophisticated
research and development efforts necessary to bring quality products to
market. NIDRR's research can identify public policy issues, such as orphan
technology and tax credits, to foster small business investment in assistive
technology innovation. Similarly, NIDRR research can identify public policy
and business issues related to mainstream systems and public technology.
NIDRR will maintain a research capacity that provides a continuing stream of
new ideas, and evidence to validate those ideas, to stimulate the industry.
Chapter 6: Independent Living and Community Integration
 
  "Whether we have disabilities or not, we will never fully achieve our goals
until we establish a culture that focuses the full force of science and
democracy on the systematic empowerment of every person to live to their full
potential" (Justin Dart, February 1998 (edited) ON A ROLL RADIO,
http://www.onarollradio.com).
Overview
 
  Independent living and community integration concepts and outcomes are key
foci of NIDRR research. Central to independent living is the recognition that
each individual has a right to independence that comes from exercising
maximal control over his or her life, based on an ability and opportunity to
make choices in performing everyday activities. These activities include
managing one's own life; participating in community life; fulfilling social
roles, such as marriage, parenthood, employment, and citizenship; sustaining
self-determination; and minimizing physical or psychological dependence on
others. While independent living emphasizes maximal independence, whatever
the setting, it is, by its very nature, a concept that also emphasizes
participation, especially participation in community settings. For this
reason, NIDRR is proposing to integrate its research agenda in independent
living and community integration to encourage interdisciplinary thinking
about the interrelationship, to achieve more successful outcomes for persons
with disabilities, and to foster the development of innovative methods to
achieve these outcomes and to measure the achievements.
Independent Living and Community Integration Concepts
 
  One framework for formulating this research agenda recognizes that
independent living has been used to describe a philosophy, a movement, and a
service program. At a philosophical level, independent living addresses the
question of equity in the right to participate in society and share in the
opportunities, risks, and rewards available to all citizens. It provides a
belief system to a generation of people with disabilities. The new paradigm
of disability is an outgrowth of this philosophical concept of equity,
bringing social and environmental elements to the meaning of disability.
  At a movement level, independent living has been integral to the
development of the disability rights movement. This movement primarily has
used a civil rights approach to demand equal access for persons with
disabilities, leading most notably to the passage of the Americans with
Disabilities Act (ADA) in 1990. These movement activities have had a
significant impact on disability policy and will continue to be examined as
part of NIDRR's Disability Studies funding.
  At the service system level, more than 300 centers for independent living
receive funding under the Rehabilitation Act and these centers foster and
enhance independent living for persons with disabilities. In addition, both
Federal and State funds support community-based residences for members of the
developmentally disabled community as well as members of other disability
groups. In the past NIDRR has supported research to develop management
strategies for these centers.
  Community integration also has conceptual, movement, and service delivery
components. As a concept, it incorporates ideas of both place and
participation, in that community integration means not only that a person is
physically located in a community as opposed to an institutional setting, but
that the individual participates in community activities. Issues of consumer
direction and control also are integral to concepts of community integration.
  As a movement, community integration had a primary goal of
deinstitutionalization of persons with mental retardation or mental illness
and has succeeded in moving many individuals from large institutional
settings back into the community. The deinstitutionalization movement arose
from a confluence of consumer advocacy, judicial decisions, research efforts,
and public policy reforms. During the last 30 years, deinstitutionalization
decreased the number of individuals with mental retardation and mental
illness residing in state institutions by more than 75 percent. In addition,
advocacy organizations for people with physical disabilities have implemented
the movement aspects of community integration in their demand for community-
based supports and services.
  At the service system level, community integration has resulted in
development or expansion of a range of services and programs designed to
support individuals with disabilities to live in their communities. For
instance, individuals who need assistance with ADLs, such as bathing,
dressing, or ambulation, often need personal assistance services (PAS) to
live independently in the community. In the traditional service delivery
model, long-term care agencies supply PAS by providing home health care aides
to individuals. These aides tend to work under the direction of professional
health care providers and perform a restricted set of tasks in time frames
determined by the agency. A support model, however, shifts the locus of
control to the consumer, who is responsible for recruiting, hiring, training,
supervising, and firing assistants.
Expanding the Theoretical Framework
 
  NIDRR proposes the continued development of a knowledge base about the
meaning and application of independent living and community integration
concepts. This theoretical approach will address issues of inclusion, bases
for participation, and ways in which persons identify their communities. This
effort will be interdisciplinary in nature and will draw from disciplines
such as anthropology, sociology, social psychology, history, Disability
Studies, engineering, and medicine. Each of these disciplines have offered
various interpretations of the issues at the core of the concept of
community. Anthropologists have defined community to emphasize a shared
culture or a way of organizing and giving meaning to life events.
Sociologists have discussed community as an organized group dealing with
common issues in relation to other organized groups within an environment.
Historians have defined community as a web of relationships creating a social
order within a political and spatial context that often focuses on issues of
who is legitimately a community member. In the world of disability and
rehabilitation, community also has had multiple meanings. In medical
rehabilitation, return to community usually refers to life outside a medical
facility, typically the community in which an individual resided before an
injury or illness. In the disability world, community sometimes means the
community of those living with a disability, those who share experiences or
identity.
  To go from theory to practice involves identifying the necessary factors
for achieving independence within a community setting. In recent years, there
has been a shift from a traditional service delivery model to a model that
emphasizes consumer direction and support. As a consequence, individuals with
disabilities of all types have shifted from a dependence on agency service
providers to an active use of community-based supports. In the support model,
consumer choice, customization of needed services, and consumer empowerment
are of increased importance compared to the traditional model in which
service agencies emphasized professional competence, accountability, and
quality control by service providers, and the safety of clients. Also, in the
support model, persons with disabilities are perceived as self-directed,
able, and mainstreamed as opposed to being helpless and objects of care in
the traditional model. Implications for research focus on investigation of
major physical and societal environmental factors, including physical
accessibility; societal attitudes and policies; and availability of services,
supports, and assistive technology that facilitate full participation.
  The emphasis on social and policy barriers inherent in the new disability
paradigm provides an incentive to examine the extent to which the ADA has
contributed to independent living and community integration. The ADA applies
a civil rights model in addressing societal policies and practices that
create barriers to full participation in society. If, however, the ADA is to
have a truly transformative impact on American society, there must be a
vision of a non-discriminatory society against which progress can be
measured. At present, there are no real benchmarks by which to assess the
ADA's impact. Evaluations tend to be in terms of "cases" handled, complaints
resolved, lawsuits won, physical barriers removed, or volumes of information
assembled rather than the extent to which the ADA has resulted in greater
participation in society by persons with disabilities.
  The growing realization of the importance of environmental barriers in
disability focuses concern on environmental changes that have the potential
to impede or facilitate independent living and community integration. Perhaps
most striking are the continuous developments in telecommunications and
information technology. Accessible computers and Internet infrastructure as
well as universal or specialized communication devices afford access to
information and interactions among persons with disabilities, their families,
advocates, service providers, employers, and others. Careful planning, based
on research, will be a requirement for ensuring that new technologies
increase participation rather than isolation for persons with disabilities.
Directions of Future Research on Independent Living and Community Integration
 
  The purpose of NIDRR's research in the area of independent living and
community integration is to facilitate participation of persons with
disabilities in society by:
  (1) Identifying and evaluating factors or domains of community integration
and independent living, especially those aspects that lead to full
participation in society;
  (2) Identifying and evaluating community support models that promote
community integration and independent living outcomes for individuals with
all types of disabilities and from a full range of cultural backgrounds;
  (3) Providing empirical evidence of the impact of consumer control on
outcomes associated with community integration and independent living;
  (4) Assessing the impact of environmental factors on individual achievement
of community integration and independent living;
  (5) Developing and disseminating training on independent living and
community integration concepts and methods for consumers, families, service
providers, and advocates; and
  (6) Developing and evaluating management tools to enable centers for
independent living and other community programs to support independent living
and community integration.
Future Research Priorities in Independent Living and Community Integration
 
  Research will analyze the implications of shifting from services to
supports for the individual and must develop an in-depth understanding of the
role of supports in facilitating community integration and independent
living.
Research on Community Integration/Independent Living Concepts
 
  Both personal experience and certain academic disciplines provide guidance
for understanding community integration and independent living. Development
of an integrated conceptual framework will facilitate rigorous research on
how to use community integration and independent living concepts to improve
the lives of persons with disabilities. Additionally, research must find ways
to measure these outcomes in order to evaluate services provided to persons
with disabilities. Specific research priorities include:
  (1) Review of relevant scholarship and creation of a theoretical framework
for the study of community integration and independent living that
incorporates the real world experiences of persons with disabilities, and
includes knowledge gained from Disability Studies;
  (2) Development of measures that build upon the conceptual framework, and
that can be applied to evaluation of rehabilitation interventions intended to
increase independence and integration; and
  (3) Analysis of cultural perspectives as facilitators-obstacles to
independent living and community integration.
Research on Implementation of Community Integration/Independent Living
Concepts
 
  The independent living and community integration movements have contributed
conceptual standards for evaluating disability and medical rehabilitation
services and programs. Further research is needed on how to apply these
concepts in different real-world settings. Currently, many programs and
services do not reflect these concepts and, consequently, often provide
services that do not incorporate consumer direction or allow consumer choice.
Specific research priorities include:
  (1) Identification and assessment of models of service delivery that
incorporate concepts of independent living and community integration and
reflect understanding of the importance of environmental barriers; and
  (2) Development and dissemination of training materials on independent
living and community integration concepts for consumers, families, service
providers, and advocates.
Research on Measures of Independence and Community Integration
 
  To evaluate how programs and services contribute to the outcomes of
independence and community integration, researchers, policymakers, and
consumers must have adequate measures of these outcomes. As discussed
elsewhere in this plan, NIDRR is placing special emphasis on development of
measures of the interrelationship between the individual and the environment.
Concepts of independent living and community integration are integral to that
process. Specific research priorities include:
  (1) Development of measures of independence and community integration that
are consumer sensitive and that measure the impact of the environment and
accommodation on these outcomes; and
  (2) Evaluation of strategies to promote independence, inclusion, and
participation.
Research on Physical Inclusion
 
  Housing, transportation, communication, and architectural barriers limit
the physical inclusion of persons with disabilities. Lack of funding also
affects access to these necessary community supports and funding constantly
changes because of policy decisions at the Federal and State levels. Specific
research priorities include:
  (1) Identification and evaluation of models that facilitate physical
inclusion, including the development and evaluation of supported housing and
transportation models that are consistent with consumer choice; and
  (2) Investigation of the impact of managed care on access to services and
equipment that provide support for physical inclusion.
Research on the Impact of the ADA
 
  The impact that the ADA has had or will have on participation in society
currently is unknown. It is important to identify the obstacles to optimal
achievement of the goals of the ADA. Specific research priorities include:
  (1) Evaluation of the impact of the ADA on community participation of
persons with disabilities and on the achievement of independent living and
community integration outcomes;
  (2) Examination of questions of accessible infrastructure, employment
patterns, civic participation, recreational activities, societal attitudes,
and policies to determine what post-ADA policy initiatives may be required to
attain full participation by persons with disabilities; and
  (3) Analysis of the extent to which the ADA has affected other public
policy initiatives.
Research on the Impact of Technological Innovation
 
  While the potential benefits of technological innovations are often
assumed, there also are potential issues about accessibility, equity, and
application of communications technology and how these issues affect
independent living and community integration. Specific research priorities
include:
  (1) Assessment of the impact of applications of telecommunications
innovations on independent living and community integration outcomes;
  (2) Identification of barriers to participation in the community, including
those resulting from inequitable distribution of technology or reduction of
interpersonal contact; and
  (3) Exploration of potential innovative applications of telecommunications
and information technologies to expand opportunities for informed choice,
independence, communication, and participation.
Research On Increasing Personal Development and Adaptation
 
  NIDRR previously has funded personal skills development training to assist
people with disabilities to live in the community. This training includes
skills related to behavior management, communication, and productive work. In
the area of behavior management for people with mental retardation and mental
illness, strategies have focused on minimizing "challenging behaviors."
Specific research priorities include:
  (1) Identification of strategies that promote development of self advocacy
skills, including social and communication tools to assist people with
disabilities to live in community settings;
  (2) Analysis of the influences of environmental factors in developing
positive behavioral support models;
  (3) Development of cost-effective techniques to foster the capacity of
providers, educators, and families to prevent or respond to challenging
behavior; and
  (4) Assessment of the potential role of technology in promoting personal
development and adaptation in community settings.
Research on Personal Assistance Services
 
  It is important to test hypotheses about the role of personal assistance
services (PAS) in promoting community integration, return to work, health
maintenance, and conversely, in saving health care and institutionalization
dollars. The relative value of different PAS systems for disabled individuals
of varying ages, disability types, ethnic groups, and personal independence
goals is unknown. Although research has demonstrated the impact of consumer-
directed PAS models on consumer satisfaction, the relationship of
satisfaction to quality of life and other outcomes measures needs further
explication. Specific research priorities include:
  (1) Evaluation of the quality-of-life and cost-effectiveness outcomes of
consumer-directed services;
  (2) Analysis of the impact of PAS on participation in employment; and
  (3) Evaluation of the impact of assistive technology on need for and use of
personal assistance services.
Research on Social Roles
 
  Public policy research is needed to examine how rules and regulations of
public programs affect achievement of desired roles by people with
disabilities. Marriage, parenthood, and employment are among the social roles
that are often discouraged by legislation, regulations, policies, and
practices. Specific research priorities include:
  (1) Investigation and documentation of the ways in which Federal, State,
and local legislation, regulations, policies, and practices impact on social
role performance of persons with disabilities; and
  (2) Identification and evaluation of tools to assist persons with
disabilities in fulfilling their social roles.
Research on Social Integration and Self-Determination
 
  The abilities to form mutually rewarding and non-exploitative friendships,
to recognize and express personal preferences, to evaluate options and make
decisions, to advocate for oneself, and to adapt to changes in circumstances
are attributes that contribute significantly to independent living and
community integration. Specific research priorities include:
  (1) Identification and evaluation of service delivery models that
incorporate individual choice and consumer control into strategies for
achieving social integration and self-determination;
  (2) Development of measures to evaluate independent living and community
integration in terms of inclusion, social integration, and self-
determination; and
  (3) Assessment of the prevalence of abuse and violence in community
settings and development of strategies to minimize their occurrence.
Research on Management Tools for Centers for Independent Living
 
  NIDRR has previously funded research on effective management strategies for
centers for independent living. Continued research in this area will evaluate
the effectiveness of current systems and address the challenges to these
centers in their expanding roles. Specific research priorities include:
  (1) Development of strategies for centers for independent living to succeed
in their roles with State rehabilitation agencies, and other agencies and
groups concerned with independent living;
  (2) Development and evaluation of strategies for centers for independent
living to design and adapt programs that address the changing nature of the
disability population; and
  (3) Development and evaluation of strategies for centers for independent
living to respond to increased emphasis on ADA issues, such as accommodation,
accessibility, and universal design; and
  (4) Investigation of applications of new information technologies in
management of centers for independent living.
  Research to facilitate community integration and independent living will
focus on strategies to make communities, social systems, public policies, and
the built environment more accessible to persons with disabilities and more
supportive of their independence and participation. In the new paradigm
scenario, the emphasis will be on supports rather than services, the managers
of support systems will increasingly be persons with disabilities themselves,
and services originally designed for application in institutions will be
adapted for use in the general community.
Chapter 7: Associated Disability Research Areas
 
  "I make no claim, as other people with a disability might, that the essence
of what I experience is inherently uncommunicable to the able-bodied world. I
do not believe that there is anything in the nature of having a disease or
disability that makes it unsharable or even untellable" (Irving Zola, 1935-
1994).
  Several important issue areas cut across the four research areas--
Employment, Health and Function, Technology for Access and Function, and
Independent Living and Community Integration--described in the earlier part
of this section. Disability statistics, disability outcomes measures,
Disability Studies, rehabilitation science, and disability policy research
are all integral to successful completion of a comprehensive agenda in
disability and rehabilitation research. NIDRR will fund research efforts in
each of these areas during the next five years to enhance NIDRR's overall
research program and contribute to NIDRR's achieving its goals of helping
people with disabilities attain maximal independence. Priorities for each
research area are discussed below.
Disability Statistics
 
  NIDRR has several purposes in advancing work in disability statistics.
First, it is important to maximize the usefulness of data currently collected
in reliable national data sets. Second, it is important to encourage the
creation and analysis of research databases, including meta-analyses focused
on problems such as employment rates or utilization of health care or social
services. Third, NIDRR seeks to understand the composition of a possible
emerging universe of disability created by new disabilities or socioeconomic
variations in the distribution of existing disabilities. These changing areas
have implications for both public health and rehabilitation. Fourth, NIDRR
wants to assist in providing input to the formulation of national disability
statistics policy, including the incorporation of measures relevant to the
new paradigm of disability. Finally, NIDRR recognizes the need for surveys to
be conducted in accessible formats, and for disability demographic and
statistical data to be readily available to a wide range of audiences.
  Data about the incidence, prevalence, and distribution of disability and
the characteristics and experiences of disabled persons, are critical to
planning research and services, evaluating programs, and formulating public
policy. These data may be generated by diverse sources such as national
population surveys, program data collection on participants, and researcher-
compiled data sets relevant to specific research areas. Other, less prominent
sources include State and local surveys, advocacy organization data, and
market research data.
  Existing data resources are of varying degrees of completeness and quality,
and are not sufficiently comprehensive in scope or perspective. None takes
into account the new paradigm of disability which examines the interaction
between the individual and the environment, and requires measures of
environmental as well as individual factors that contribute to disability.
NIDRR has taken a lead role in elucidating the connection between impairment
and the supports or limitations imposed by the built and social environments,
and will initiate the process of developing new survey measures to define
disability accurately and reliably in the context of both individual and
environmental factors.
Research Priorities for Disability Statistics
 
  NIDRR will continue to support the secondary analysis of major national
data sets, especially the Disability Supplement to the National Health
Interview Survey, identifying information and connections not considered by
the survey sponsors. NIDRR's other focus will be the refinement of the
disability data effort to reflect new paradigm concepts. Specific research
priorities include:
  (1) The elucidation of salient issues or the stimulation of further
research questions through meta-analyses;
  (2) Development and evaluation of state-of-the art measurement tools that
will assess the complex interactions between impairment and environment;
  (3) Development and evaluation of strategies to ensure that disability
statistics accurately capture information on underrepresented minorities and
emergent disabilities;
  (4) Development and evaluation of methods for ensuring the dissemination of
disability statistical data to diverse audiences; and
  (5) Development and testing of accessible survey instruments and protocols.
Disability Outcomes Measures
 
  The importance of demonstrating outcomes across service settings, programs,
and research efforts cannot be overemphasized, given resource allocation
issues and concerns about value that operate at every level of our society.
Demonstrating outcomes is an integral part of NIDRR's research agenda now and
in the future. For purposes of discussion, several categories of outcome
measures are presented. In practice, however, these measures may not be
mutually exclusive.
  One area in which significant prior work on outcomes measures has occurred
is medical rehabilitation. A number of measures have been developed and
integrated into service delivery and research settings. Examples of these
measures include impairment specific measures such as the NIH Stroke Scale,
disability measures like the Functional Independence Measure (FIM), and
measures of handicap such as the Craig Hospital Assessment and Reporting
Technique (CHART). Many of these measures, however, have been validated
narrowly and are not applicable across disability groups. Some were developed
for hospital settings and require revision for use in post-acute programs or
in community settings. The new focus on long-term outcomes requires measures
that can document changes over time. Use of an outcomes-based approach also
has ramifications for sample design, in terms of identifying homogeneous
groups of consumers for comparison and using effective risk-adjustment
methodologies. New managed care approaches have resulted in demands by people
with disabilities for outcomes monitoring to ensure that quality care
standards are met. This concern for measurable outcomes, based on quality
standards, also is evident in the payer community, which has raised questions
about evidence of the efficacy of treatments.
  Expanding the focus of outcomes research to incorporate measures of
environment and accommodation is critical to continued implementation of a
new paradigm of disability. At the present time, our ability to describe the
interaction of individual and environment is limited by a lack of validated
measures. A number of conceptual and methodological concerns must be
addressed in developing such measures. Of particular relevance is how best to
account for the impact of numerous variables, including environmental
factors, that impinge on long-term outcomes.
  Independence and community integration have been identified as overarching
NIDRR goals, and NIDRR's research initiatives relate directly to supporting
achievement of these goals. As indicated earlier, some measures of community
integration are already in use, including CHART and the Community Integration
Questionnaire (CIQ). These measures, developed for specific populations, are
examples of tools that might be refined to monitor and compare progress
toward goals of independence and community integration.
  Distinctly related to functionally oriented medical outcomes measures are
measures of quality of life. These measures are conceptually linked to
individual values about living with disability and include the impact of
rehabilitation and environmental barriers. A particular challenge in
developing these measures is the qualitative nature of individual valuation
of life quality and the difficulty of constructing ways of comparing
individual perceptions.
Research Priorities for Disability Outcomes Measures
 
  NIDRR will support research and development activities that increase the
availability of measures across the areas discussed in this section. Specific
research priorities include:
  (1) Refinement of existing measures of medical rehabilitation effectiveness
to improve assessment of functional ability by incorporating environmental
factors;
  (2) Development and evaluation of measures of independence, community
integration, and quality of life, especially measures that incorporate the
perspectives of persons with disability; and
  (3) Development of measures for use in outpatient and community-based
settings.
Disability Studies
 
  The field of disability and rehabilitation research has not reached a
general consensus on the meaning of the term "Disability Studies." NIDRR uses
the term generally to refer to the holistic study of the phenomenon of
disability through a multidisciplinary approach that emphasizes the
perspectives of persons with disabilities and regards personal experience as
valuable data. The IOM, in Enabling America, describes Disability Studies as
"the examination of people with disabling conditions and cultural response to
them through a variety of lenses, including * * * economics, political
science, religion, law, history, architecture, urban planning, literature * *
*" (1997, p. 289). NIDRR believes that Disability Studies is a natural
complement to the new paradigm, emphasizing study of the complex relationship
between various aspects of disability and society, and will enhance the
methodologies and knowledge base of each involved scientific discipline.
  In this respect, the content of Disability Studies is not unlike that of
other area studies, such as Women's Studies, African-American Studies, or
geographic, regional or ethnic studies (e.g., Middle Eastern Studies or
Islamic Studies). All of these areas of study require the convergence of
theory, technique, and methodology from a range of disciplines to develop an
enhanced understanding of a complex phenomenon.
  Another purpose for the development of any area of studies is to assure
that the perspective of the group under study is reflected in the methodology
and body of core knowledge, and that individuals from the group have the
opportunity to participate in the development and promulgation of the
methodologies and the curricula. This also can be expected to lead to an
impact on core disciplines, specifically an impact that requires development
of theories and hypotheses that do not ignore the subject population. For
example, Women's Studies have influenced the development and legitimation of
studies of the sociology of gender within a discipline that 30 years ago
relegated the study of women, when they were studied at all, to home
economics or family relations. Economists analyzing poverty now must consider
the particular causes and effects of poverty among women and in ethnic
groups, largely due to the attention and legitimation of these subjects by
the "area studies" efforts.
  NIDRR has three basic purposes for supporting a program of Disability
Studies. First, disability and rehabilitation research needs a body of
knowledge that is comprehensive and holistic, reflecting a range of
disability perspectives, and it needs a larger cadre of researchers and
policymakers familiar with that knowledge base. Second, the field of
disability and rehabilitation research needs to develop methodologies and
influence the theories and practices of a range of disciplines in order to
ensure their constructive attention to the issues related to disability,
thereby enhancing the scientific endeavor. Third, consistent with the goals
of the Rehabilitation Act, as amended in 1992, especially its principles of
inclusion, integration, and independence, NIDRR believes it is important to
reflect the perspectives of individuals with disabilities in studies of
disability and to afford increased opportunity for individuals with
disabilities to participate in the development of curricula and methodologies
to study the phenomenon of disability.
Research Priorities for Disability Studies
 
  Specific research priorities for Disability Studies include:
  (1) Development of a theoretical framework for conducting Disability
Studies and strategies for teaching Disability Studies at various academic
and non-academic levels;
  (2) Compilation of information about the many forms of extant Disability
Studies, including academic levels, disciplines involved, course content,
resources, and students; and
  (3) Exploration of the feasibility of developing non-academic courses in
Disability Studies that will facilitate the study of the experience, history,
and culture of disability in community-based settings.
Rehabilitation Science
 
  Permeating NIDRR's research agenda will be an awareness of opportunities to
construct and test a theoretical framework for rehabilitation science. As
defined in the 1997 IOM report, Enabling America, rehabilitation science is a
study of function, focusing on the processes by which disability develops,
and the factors influencing these processes. Its goals are to contribute to
better treatment and technology for persons with disabilities. Rehabilitation
science focuses on factors that lead to transitions along a continuum from
underlying pathology to functional independence, including impairment,
functional limitation, and disability. In addition, it analyzes physical,
behavioral, environmental, and societal factors that affect movement along
the continuum (Brandt & Pope, 1997). The field of rehabilitation has produced
a body of empirical evidence regarding function and interventions to improve
function. The next challenge is to use this evidence to produce a body of
scientific and engineering theory that can be applied to the development of
breakthroughs in functional restoration techniques.
Research Priorities for Rehabilitation Science
 
  Specific research priorities for rehabilitation science include:
  (1) Further elucidation of the enabling-disabling process; and
  (2) Exploration of the development and application of a theoretical
framework for rehabilitation science.
Disability Policy
 
  Public disability policy broadly defines the participation of disabled
persons in the general benefits society provides to all citizens, as well as
the parameters of disability-specific benefits. Public policy has more
significance for people with disabilities and their families than for many
segments of the population. This differential impact stems, in part, from the
fact that people with disabilities must interface with so many different
components of public policy systems, many of which are conflicting or
inconsistent, such as employment goals and requirements for income assistance
programs. The larger public policy context for disability and rehabilitation
research reflects interlinking service delivery systems in which changes in
one system often have substantial impact on others. The dilemma for
disability and rehabilitation policy is that the various systems are not
mutually reinforcing.
  The lack of mutual reinforcement stems from four factors. First, policy
goals may be, to some degree, mutually exclusive; that is, policies designed
to emphasize one goal may be implemented only at the expense of other goals.
Second, different policies are governed by different and conflicting
assumptions about disability and the role of people with disabilities in
American society. Third, some service systems lack integration with other
systems and programs needed to promote continuity between different parts of
people's lives. Fourth, disability has been largely ignored in national
science and technology policy. Thus, underlying conflicts may exist and
result in unintended disincentives to work and independence.
  At the systems and societal levels, the potential impact of policy
initiatives on persons with disabilities may be even more significant,
although more likely to go unrecognized. The impact of telecommunications,
the built environment, health care, and labor market policies have been
discussed in this Plan.
Research Priorities for Disability Policy
 
  Disability policy research should examine issues that are national in scope
and that represent intersections of public interest. Such research should use
national data sets, where possible, to determine the impacts of policy
decisions on persons with disabilities. Specific research priorities include
but are not limited to:
  (1) Analysis of how the bundling of income supports with other benefits,
including health insurance and other in-kind assistance such as housing
subsidies or food stamps, affects individual decisions to seek or continue
employment;
  (2) Evaluation of the impact of changing social policies toward parenting,
personal assistance services, tax deductions, or education, among other
factors;
  (3) Analysis of the impact of welfare-to-work initiatives on the well-being
of persons with disabilities or their families;
  (4) Evaluation of the impact of macroeconomic issues, such as changing
labor force requirements, on employment opportunities of persons with
disabilities;
  (5) Evaluation of the impact of legislation and policy on employers,
professional service providers, social service agencies, and direct support
workers in terms of their participation in employing, serving, or working for
disabled persons;
  (6) Investigation and evaluation of the relevance of frameworks for
disability research, including but not limited to research on the role of
market forces (balancing supply and demand) on disability policy;
  (7) Investigation of the impact of national telecommunications and
information technology policy on the access of persons with disabilities to
related education, work, and other opportunities; and
  (8) Examination of the impact of national housing policy and building codes
on the living environments and housing choices of persons with disabilities
and their families.
  Related disability research emphasizes knowledge areas that are cross-
cutting and essential to the support and refinement of disability research
generally. The common theme linking disability statistics, outcomes measures,
Disability Studies, rehabilitation science, and disability policy is that
they all provide essential frameworks and building blocks that enable the
disability research enterprise to thrive and to address important issues in
meaningful ways.
Chapter 8: Knowledge Dissemination & Utilization
 
  "Our mission at the Office of Special Education and Rehabilitative Services
is to ensure that people with disabilities become fully integrated and
participating members of society. Dissemination and utilization are the tools
through which we do this" (Judith E. Heumann, OSERS Assistant Secretary).
Overview
 
  Effective dissemination and use of disability and rehabilitation research
are critical to NIDRR's mission. Research findings can only improve the
quality of life of people with disabilities and further their full inclusion
into society if they are available to, known by, and accessible to all
potential users. NIDRR supports a strong dissemination and utilization
program that reaches its many constituencies: research scientists, people
with disabilities, their families, service providers, policymakers,
educators, human resource developers, advocates, entities covered by the ADA,
and others. In carrying out this mission, NIDRR's challenge is to reach
diverse and changing populations; to present research results in many
different and accessible formats; and to use technology appropriately.
  The Rehabilitation Act's 1992 amendments included language requiring NIDRR
to ensure the widespread distribution, in usable formats, of practical
scientific and technological information generated by research, demonstration
projects, training, and related activities. In addition, NIDRR's
responsibilities were amended to emphasize wide dissemination of educational
materials and research results to individuals with disabilities, especially
those who are members of minority groups or of unserved or underserved
groups. In addition, the statute requires Rehabilitation Research and
Training Centers (RRTCs) to serve as information and technical assistance
resources to providers, individuals with disabilities, and others through
workshops, conferences, and public education programs. Rehabilitation
Engineering Research Centers (RERCs) are required to disseminate innovative
ways of applying advanced technology and to cooperate with Tech Act projects
to provide information to individuals with disabilities to increase their
awareness of options and benefits from assistive technology.
  Effective dissemination employs multiple channels and techniques of
communication to reach intended users. This chapter addresses strategies and
techniques to disseminate information to a wide range of target audiences and
to promote the utilization of this information. These strategies take into
account a range of uses--conceptual or practical, total or partial, converted
or reinvented. The strategies also incorporate innovative technologies to
enhance direct access by diverse groups. Additionally, this chapter outlines
NIDRR's proposed research agenda for dissemination and utilization
activities.
The Knowledge Cycle--The Role of Dissemination and Utilization
 
  The components of the knowledge cycle are knowledge creation, knowledge
dissemination, and knowledge utilization. The concept of the cycle implies
continuous interaction among its parts. At NIDRR, knowledge creation results
from funded research and training programs, and staff activities. The
challenge of NIDRR's dissemination and utilization activities involves
transferring this knowledge, targeted to specific user populations, to
improve the lives of persons with disabilities.
  Effective dissemination requires understanding that communication channels
are continually expanding and range from personal communications to mass
media (e.g., print, radio, television, the emerging information superhighway,
and the merging of these and other communications technologies). To choose
the most effective communication strategy, it is helpful to identify clearly
the intended audience (e.g., scientists, service providers, persons with
disabilities), the context for use (e.g., home, work, community), and the
characteristics of the information to be disseminated (e.g., type, use,
relative advantage, compatibility, complexity).
  Knowledge utilization activities focus on ways to facilitate use of
research results, new technologies, and effective practices or programs. To
be used, knowledge must relate to a perceived need, must be understandable,
and must be timely. Thus, awareness of potential uses for the information
should influence research design and materials development, keeping in mind
that flexibility is important because there may be unanticipated audiences
for the material. Selecting dissemination strategies that relay information
quickly is equally important.
The Changing Environment for Dissemination
 
  The environment in which dissemination and utilization strategies operate
is being affected by a number of changes, including technological innovation,
changing etiology of disability, and an increased emphasis on the
individual's interaction with the physical and social universe. These changes
must be factored into future dissemination and utilization approaches.
  As Paisley notes, "Many of the problems that challenge knowledge
utilization have changed little since the 1960s and 1970s; however, the
communications environment of knowledge utilization has changed dramatically
(as cited in Southwest Educational Development Laboratory, 1996)." Consumer
demand for direct and rapid access to information, and the technological
capacity to disseminate information simultaneously and inexpensively to mass
audiences through electronic media, such as the World Wide Web, are changing
dissemination and utilization strategies. The Internet, a beginning step in
the creation of the global information superhighway, is open to anyone with a
computer, modem, and telephone. The number, sophistication, and accessibility
of Internet sites serving the information needs of people with disabilities
are increasing rapidly. These innovations permit NIDRR projects and centers
to communicate more easily with larger numbers of targeted users at all
phases of the research process; however, this proliferation raises difficult
questions about equity, access, and effectiveness (Southwest Educational
Development Laboratory, 1996, p. 8).
  Changes in the prevalence and distribution of disabilities are influencing
NIDRR's research. An emerging universe of disability, incorporating
disability related to underlying social and environmental conditions such as
poverty, isolation, and aging, has created new disabilities and new targets
for dissemination of research findings.
  Finally, the importance of an ecological science model that focuses on
relationships and interactions that influence, and are influenced by, the
environment of an individual, organization, or community is receiving
increased recognition. Research affects society; society, in turn, affects
what is studied and how it is studied. NIDRR supports research that is issue-
based and flexible to facilitate timely responses to environmental changes
and timely contributions to society.
Dissemination/Utilization Strategies for the Future
 
  In response to the needs of constituencies and to the changing physical and
social environment, future dissemination and utilization strategies must
build upon successful past strategies, while capitalizing on the potential of
electronic media and other telecommunications innovations. These strategies
must provide accessible formats for new population groups and for individuals
with cognitive or sensory disabilities. To be successful, NIDRR grantees need
assistance with early integration of dissemination and utilization features
into research projects. Efforts will continue to increase the capacity of
consumers to access and use research-based information. Finally, NIDRR will
support research that will determine effective dissemination methods and
evaluation techniques.
  In the section that follows, a number of dissemination and utilization
activities are proposed. These proposed activities reflect NIDRR's concerns
about the importance of dissemination in making research usable to its
constituencies.
Dissemination of Research Findings
 
  NIDRR, in order to enhance dissemination of research, will undertake a
number of activities, including a national information center, creating
databases, developing consumer partners, providing specialized assistance to
grantees, using electronic media, targeting new audiences, and evaluating
dissemination methods.
Establishing a National Information Center
 
  NIDRR will establish a national dissemination center to address long-term
dissemination and utilization objectives for individuals, groups, and
communities representing diverse geographic, multicultural, and socio-
economic populations. This center will provide technical assistance to
grantees in improving their dissemination activities; conduct selected
national dissemination projects; and serve as a resource on dissemination
theory, new techniques, and evaluations of dissemination strategies. The
center will maintain a web site and will work with groups of NIDRR grantees--
for example, the Model Projects for Spinal Cord Injury--to develop
accessible, special-focus web sites. In addition, the center will:
  (1) Publish research findings in refereed journals for the academic
community;
  (2) Translate complex research findings into accessible language and
format, in consumer-oriented publications;
  (3) Maintain a library and information center, such as the National
Rehabilitation Information Center (NARIC), with archival and bibliographic
retrieval capacity; and
  (4) Determine markets for NIDRR-funded research products and appropriate
strategies for reaching these markets.
  Using Databases and Key Publications. To support knowledge dissemination
and extend the availability of research products, NIDRR will:
  (1) Maintain a database of assistive technology products, such as ABLEDATA,
that is accessible to consumers and service providers, and is available on
the Internet;
  (2) Make key publications, such as NIDRR's Program Directory and Compendia
of Research products, available on the Internet; and
  (3) Establish a management database to track dissemination activities and
to identify research results suitable for further dissemination.
Developing Consumer Partnerships
 
  To enlist the target populations in ensuring that disseminated research
findings are relevant, accessible, and useful, NIDRR will:
  (1) Explore the potential for developing partnerships with independent
living centers and State Vocational Rehabilitation agencies to identify,
repackage, and market information specific to their needs;
  (2) Provide technical assistance to community organizations or public
agencies to facilitate the adaptation of research findings into practical
use; and
  (3) Provide technical assistance and training to consumers and consumer
organizations on accessing, interpreting, and using new information,
including training on use of electronic information sites and on providing
feedback to the research process.
Providing Specialized Assistance To Grantees In Their Dissemination Roles
 
  NIDRR Centers and other grantees are important information resources; and,
to enhance their productivity in disseminating the results of their research,
NIDRR will:
  (1) Promote the publication of research findings in scientific journals and
in consumer-oriented publications;
  (2) Provide technical assistance for "translation" and marketing;
  (3) Develop inter-center and inter-project linkages for routine
communication and sharing of information;
  (4) Assure timely availability of research findings and products in usable
form for targeted user groups; and
  (5) Provide technical assistance on dissemination and utilization processes
to constituency groups.
Using Electronic Media and Telecommunications
 
  Exciting developments in information technology greatly enhance the
possibility of reaching more research information users in efficient and
effective ways, and to capitalize on this potential, NIDRR will:
  (1) Explore the feasibility of an Online Disability News Service, focusing
on government-funded research data; funding opportunities; updates from the
legislative, judicial, and executive branches of government; awards;
achievements; current issues; and problem solving attempts;
  (2) Initiate activities to improve the portrayal of individuals with
disabilities in the media, including specialized media efforts directed
toward the Nation's youth or diverse cultural groups;
  (3) Examine the role of distance learning approaches in dissemination;
  (4) Explore communications strategies for effective Internet searches for
disability-related information, including directories of sites and a
thesaurus of key words; and
  (5) Provide technical assistance and training to consumers and consumer
organizations on accessing, interpreting, and using new information,
including training on use of electronic information sites. Emphasize ways to
increase the skills and access of elderly and minority consumers to the
Internet and other electronic media.
Reaching Out to New Audiences
 
  The changing nature of disability and of the disabled population require
thoughtful efforts to reach new audiences. To facilitate these efforts, NIDRR
will:
  (1) Ensure the accessibility--both in format and content--of all products
disseminated by NIDRR and its grantees. This may include the use of alternate
formats (e.g., Braille, large print, audiotape, captioned videos) or the use
of language appropriate for persons with cognitive impairments or who are
non-English speaking;
  (2) Improve dissemination of information from NIDRR-funded projects to
consumer audiences of culturally diverse backgrounds as well as elderly
people, newly disabled individuals, and other people with disabilities who
may not be reached by traditional dissemination methods;
  (3) Target general audiences that influence the opportunities available to
persons with disabilities. These general audiences include employers,
manufacturers, educators at all levels, economic development and planning
personnel, service establishments, the media, and policymakers at local,
State, and national levels; and
  (4) Explore ways to involve people with disabilities in all aspects of the
research cycle.
Evaluation of Dissemination Methods
 
  Finally, while commercial media efforts are regularly evaluated, little has
been done to assess the effectiveness of research dissemination strategies in
the disability field. Given the central importance of dissemination to its
broad constituency, NIDRR will:
  (1) Conduct projects to advance theories in dissemination and utilization
and to evaluate the application of the various dissemination and utilization
approaches; and
  (2) Test methods for measuring the utilization and impact of research
results for different target audiences.
Chapter 9: Capacity Building for Rehabilitation Research and Training
Overview
 
  To ensure that research improves the lives of individuals with
disabilities, NIDRR will support efforts to enhance the capacity of the field
to conduct research that is scientifically excellent and relevant to the
concerns of disabled individuals, service providers and the science
community. This research will be based in the contextual paradigm of
disability, emphasizing cross-disciplinary efforts and participatory research
that take into account trends in science and society, and that are reflective
of disability culture. Capacity building involves training those who
participate in all aspects of the disability research field, including
scientists, service providers, and consumers. While NIDRR's programs have
made significant contributions to creating the disability and rehabilitation
research capability that exists in our Nation today, it will be necessary to
refocus the content, and, to some extent, the structure of those programs to
meet the emerging needs of science and consumers. NIDRR will make creative
use of funding mechanisms to meet these challenges.
Priorities in Capacity Building
 
  NIDRR interprets its capacity-building responsibilities as multifaceted.
NIDRR's principal statutory mandate for training is to support advanced
instruction for researchers and service providers. NIDRR also has an implied
mandate, strengthened in the 1992 Amendments, to train consumers in the
applications of new research knowledge and in the uses of assistive
technology. To advance the disability and rehabilitation field, NIDRR will
expand the scope of its capacity-building activities to:
  (1) Raise the level of rigorous qualitative and quantitative research and
increase the use of state-of-the-art methodologies by providing advanced
training in disability-related research for scientists, including those with
disabilities and those from minority backgrounds;
  (2) Train rehabilitation practitioners in the application of research-
generated knowledge and new techniques;
  (3) Develop the capacity of researchers to conduct research that explicates
disability as a contextual phenomenon;
  (4) Prepare researchers to conduct Disability Studies that are holistic,
interdisciplinary, and cognizant of the cultural context of disability;
  (5) Develop the capacity of researchers to conduct studies in new settings,
(e.g., homes, work places, schools, recreational facilities, community-based
organizations); and
  (6) Train consumers, family members, and advocates in the use of research
findings, in part to facilitate participatory research efforts.
  Additional information on each of these priority areas is provided in the
following sections.
Training for Advanced Research Studies
 
  It is crucial to NIDRR's mission that research in disability and
rehabilitation reflect sound science practices, using rigorous qualitative
and quantitative methods. Adherence to sound methodology and research design
strengthens the credibility of NIDRR's research and, consequently, the
ability of NIDRR's constituencies to use the research findings in advocacy,
service delivery, and policymaking. To this end, NIDRR will increase its
emphasis on scientific rigor in generating research agendas and in reviewing
research applications. Scientific rigor may encompass methodological
approaches such as controlled studies, longitudinal studies, or increased
sample size. Constructing carefully defined hypotheses tied to theory is an
important element in improving research methods. For qualitative research
efforts, rigor includes strict adherence to analytical frameworks, improved
data collection methods, and careful selection of subjects.
  The capability to conduct first-rate research depends on several factors: a
commitment to learning the multiple skills required for designing scientific
studies, selecting appropriate research methods, analyzing data, and
interpreting findings. NIDRR will continue its support of research training
initiatives, including those that target research training opportunities for
minorities and persons with disabilities. This training focus reflects
NIDRR's commitment to participatory research methods that enhance the
relevance of research findings.
Training in Application of Research Findings
 
  NIDRR Rehabilitation Research and Training Centers (RRTCs) will advance
further the statutory requirement to train service providers in application
of research findings to real-world needs of persons with disabilities.
Training can occur at many levels, including pre-service, graduate, and in-
service. NIDRR will support training aimed at transferring research findings
into practical use. Such training must be sensitive to the rapidly changing
service delivery environment, which is de-emphasizing inpatient care and
experiencing growth in post-acute and community settings.
Training in New Paradigm Research
 
  As discussed throughout this Plan, the new paradigm conceives of disability
as a function of the interaction between impairments and other personal
characteristics and the larger physical, social, and policy environments.
Unidimensional and static measures of function, improvement, outcomes, and
other aspects of disability and the rehabilitation process will not be
sufficient.
  Any paradigm of science that limits research to modification of the
person's functions without including an equal emphasis on changing the
person's environment is not an approach that can capture the important
phenomena associated with living as a disabled individual. Nor will it
accommodate scientific and social advances in the multiple, interactive
sectors of society that will characterize life in the next century. Although
developments in both the biological and biomechanical sciences will bring new
treatments and devices that will improve personal functions, these advances
must be adjusted to meet the demands of the person living in his or her
environment of choice doing activities that are of significance to that
individual.
  A framework for asking new questions for NIDRR-funded research has been
provided by the major provisions of the ADA. Researchers must develop
measures that capture the contributions of the social and physical
environments to the disability. The need for researchers capable of
investigating and explicating disability in context, and explaining the
adapting process, has several implications for the research training
endeavor. The training must:
  (1) Emphasize interdisciplinary research and design of methodologies that
can test complex hypotheses;
  (2) Attract researchers from disciplines not usually involved with
disability and rehabilitation research. These include law, economics,
architecture, business, marketing, demographics, public policy, and
administrative sciences, among others;
  (3) Incorporate an understanding of disability policy and Disability
Studies among researchers in all disciplines;
  (4) Apply the principles of the ADA--universal access and accommodations--
in all research areas;
  (5) Include consumers in the research endeavor; and
  (6) Focus on the "adapting process," which comprises changes in individual
performance in response to a physical limitation, and changes in the
environment to better accommodate individual needs.
  The interaction of these changes provides the basis for understanding how
best to proceed in improving participation for people with disabilities.
Supporting Disability Studies
 
  The cultural context of disability is a key element in the emerging field
of Disability Studies. Major societal changes have influenced how disability
is perceived by those with disabilities and by those who study persons with
disabilities. Persons with disabilities are now viewed as individuals who are
adapting to challenges (e.g., personal assistance services, assistive
technology use, access, accommodation, civil rights) in their response to
society (e.g., sociopolitical analysis of activism, disability culture,
independent living), and in society's response to them (e.g., stigma, policy,
economics, transportation, housing). The merging of these issues into an
encompassing academic area is the genesis of Disability Studies.
  In Disability Studies, there is a convergence of theory, technique, and
methodology from a range of disciplines to develop an enhanced understanding
of a complex phenomenon. The perspective of the subject group in Disability
Studies is reflected in the methodology and body of core knowledge.
Individuals from the subject group must have the opportunity to participate
in the development and promulgation of the methodologies and the curricula.
NIDRR has four long-term objectives for providing priority support to this
area:
  (1) Creation of a body of knowledge that is comprehensive and holistic;
  (2) Training of a cadre of researchers and policymakers familiar with that
knowledge base;
  (3) Inclusion of the perspectives of individuals with disabilities in
designing curriculum and research to reflect the experiences of persons with
disabilities; and
  (4) Creation of opportunities for individuals with disabilities to study,
in a variety of settings, the history, politics, economics, sociology,
literature, culture, psychology, and other aspects of disability.
Increasing Capacity for Research Under New Conditions

  The research questions and the types of training needed for rehabilitation
professionals will change as the paradigms of science change and economic
realities force reductions in the duration of rehabilitation service
programs. Many rehabilitation researchers today are accustomed to conducting
research in hospital-based or other clinical sites, applying methodologies
and protocols developed in these traditional settings. In the future, sites
for conducting research and for training new rehabilitation scientists will
be homes, work places, schools, recreational facilities, and community-based
support programs. This change involves adapting to reduced access to subject
and control groups, working with paraprofessionals and disabled peers in the
data collection effort, and working with shared or preexisting databases.
Future research on the effectiveness of interventions will be conceptualized,
developed, tested, implemented, validated, and evaluated at venues other than
hospitals, rehabilitation facilities, clinics, and other traditional service
delivery sites.
Increasing Consumer Capacity and Participatory Research
 
  Consumers and consumer organizations have important roles in the research
endeavor, including planning research priorities, assessing real-world
relevance, and educating researchers in the realities of their aspirations,
needs, obstacles, and daily living conditions. Consumers must also review and
evaluate research findings and reinterpret them for application to their
lives. Finally, consumers can disseminate and advocate for research. The
disabled individual as a whole person operating in a given environment is the
focus of NIDRR's research, and it is important that individuals with
disabilities willingly provide data about themselves in the role of research
subjects.
  Consumers are more likely to trust the research endeavor if they believe it
is relevant to their needs or if they believe it is conducted with
appropriate sensitivity to their concerns. NIDRR will continue to take an
active role in forging cooperative partnerships between researchers and the
disability community. These endeavors must feature an honest and respectful
exchange of knowledge and seek cooperative endeavors around common ground.
Study of the social, contextual, and environmental aspects of disability
provides a promising impetus for the new, strengthened partnership. NIDRR
will support participatory research and Disability Studies as strategies to
achieve the goals of an informed and active consumer community. Education,
training, awareness, and partnerships are among the techniques that will be
used to address this goal.
  NIDRR has supported the principle of appropriate and effective
participatory research, that is, research that incorporates the perspectives
and efforts of persons with disabilities. Participatory research is evaluated
by standards of scientific excellence and real-world relevance. NIDRR
grantees have developed a number of innovative approaches to implement this
principle of participatory research. Additional study of participatory
research concepts, fundamental principles, operating guidelines, and most
appropriate applications will enhance its future use. NIDRR will sponsor
research on the conditions under which participatory research enhances the
process and improves the products of research. NIDRR will sponsor research,
development, demonstration, and dissemination efforts to enhance the
understanding of participatory research applications and techniques.
Funding Mechanisms to Enhance Capacity Building
 
  Clearly, there has been a shift in the social and scientific paradigms used
to define, study, and explain disability. Consequently, the training models,
research methods, and issues studied also must change. Funding excellent
research projects depends, to a large extent, on the quality of grant
applications. In turn, the subject matter and quality of research reflect the
competencies the investigators acquired in their training. The context for
training is nested in the types of programs funded by NIDRR. NIDRR will
expand these existing mechanisms--Rehabilitation Research and Training
Centers (RRTCs), Advanced Rehabilitation Research Training Grants (ARRTs),
Switzer Fellowships, New Scholars Program, and the Minority Enhancement
Programs--to help meet future challenges.
Rehabilitation Research Training Centers
 
  NIDRR has a long tradition of funding projects at universities, medical
rehabilitation facilities, and vocational and social service agencies.
Enhancing the capacity to conduct disability and rehabilitation research
requires planning and coordination of three key components of research
training: mentors and trainers, relevant topics, and appropriate sites. NIDRR
Centers have the critical mass of expertise and knowledge to provide:
  (1) Advanced, experiential training for researchers;
  (2) Classroom training for researchers and clinicians, at undergraduate and
graduate levels;
  (3) Short-term training to teach scientists new methodologies;
  (4) In-service training for rehabilitation practitioners;
  (5) Training for consumers, their families, and representatives in
implications and applications of new research-based knowledge;
  (6) Community-based training in Disability Studies and related areas,
particularly in those centers with a strong focus on independent living,
community integration, and policy issues;
  (7) Education and training in disability professions and in disability
research for individuals with disabilities and for minority individuals; and
  (8) Training of rehabilitation educators and educators in a range of
related disciplines.
Advanced Rehabilitation Research Training Grants
 
  ARRTs will provide advanced research training that integrates disciplines;
teaches research methodology in the environmental, or new paradigm, context;
and promotes capacity for Disability Studies. These training programs must
operate in interdisciplinary environments and provide training in rigorous
scientific methods.
Mary Switzer Fellowships
 
  These fellowships will augment scholarly knowledge in the field and
function in an integrative capacity to define new frontiers of disability and
rehabilitation research. NIDRR plans to provide more opportunities for
interaction among the fellows and for exposure to established researchers and
policymakers.
New Scholars Program
 
  This program will recruit undergraduates with disabilities to work in
NIDRR-funded centers and projects to expose them to disability and
rehabilitation research issues, while at the same time providing work
experience and income. This program, operated in affiliation with the Dole
Foundation, is an innovative private/public partnership aimed at generating
interest in research careers for persons with disabilities.
Minority Enhancement Program
 
  This program will focus on Historically Black Colleges and Universities and
institutions serving primarily Hispanic, Asian, and American Indian students.
NIDRR will evaluate this program to determine the extent to which it is
achieving the objectives of Section 21 of the Rehabilitation Act, and to
implement necessary strategies to enhance outcomes.
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[FR Doc. 98-28474 Filed 10-23-98; 8:45 am]

