[Federal Register Volume 63, Number 206 (Monday, October 26, 1998)]
[Notices]
[Pages 57190-57219]
From the Federal Register Online via the Government Publishing Office [www.gpo.gov]
[FR Doc No: 98-28474]



[[Page 57189]]

_______________________________________________________________________

Part III





Department of Education





_______________________________________________________________________



National Institute on Disability and Rehabilitation Research; Notice of 
Proposed Long-Range Plan for Fiscal Years 1999-2004; Notice

  Federal Register / Vol. 63, No. 206 / Monday, October 26, 1998 / 
Notices  

[[Page 57190]]


-----------------------------------------------------------------------


DEPARTMENT OF EDUCATION


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: [email protected]. 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__N[email protected]
    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.
Judith E. Heumann,
Assistant Secretary for Special Education and Rehabilitative Services.

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

[[Page 57191]]

full use of new knowledge that will improve substantially the options 
for disabled individuals to perform regular activities in the 
community, and the capacity of society to provide full opportunities 
and appropriate supports for its disabled citizens.
NIDRR's Statutory Purpose
    The inception of a Federal rehabilitation research program was part 
of the legacy of the late Mary E. Switzer, pioneering director of the 
Federal-State vocational rehabilitation program. By establishing NIDRR 
1 in 1978, through Amendments to the Rehabilitation Act of 
1973 (Public Law 93-112), Congress realized Switzer's vision and 
created a research institute in the public interest. As such, NIDRR 
must generate scientifically based knowledge that furthers the values 
and goals of the disability community, the knowledge needs of service 
providers, and the creation of rational public policy.
---------------------------------------------------------------------------

    \1\ Established as the National Institute of Handicapped 
Research, the Institute's name was changed to NIDRR by the 1986 
Amendments to the Rehabilitation Act.
---------------------------------------------------------------------------

    In 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:
---------------------------------------------------------------------------

    \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

[[Page 57192]]

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.

[[Page 57193]]



                                         Table 1.--Contrast of Paradigms
----------------------------------------------------------------------------------------------------------------
                                             ``Old'' Paradigm                        ``New'' Paradigmq
----------------------------------------------------------------------------------------------------------------
Definition of Disability........  An individual is limited by his/her     An individual requires an
                                   impairment or condition.                accommodation to perform functions
                                                                           required to carry out life
                                                                           activities.
Strategy to Address Disability..  Fix the individual, correct the         Remove barriers, create access through
                                   deficit.                                accommodation and universal design,
                                                                           restore function, maintain wellness
                                                                           and health.
Method to Address Disability....  Provision of medical, vocational, or    Provision of supports, e.g., assistive
                                   psychological rehabilitation services.  technology, personal assistance
                                                                           services, job coach.
Source of Intervention..........  Professionals, clinicians, and other    Peers, mainstream service providers,
                                   rehabilitation service providers.       consumer information services.
Entitlements....................  Eligibility for benefits based on       Eligibility for accommodations seen as
                                   severity of impairment.                 a civil right.
Role of Disabled Individual.....  Object of intervention, patient,        Consumer or customer, empowered peer,
                                   beneficiary, 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
---------------------------------------------------------------------------

    \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

[[Page 57194]]

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).

[[Page 57195]]



               Table 2.--Concepts in Models of Disability
------------------------------------------------------------------------
            ICIDH                 Nagi/1991 IOM             NCMRR
------------------------------------------------------------------------
Disease--Something abnormal   Active pathology--    Pathophysiology--Int
 within the individual;        Interruption or       erruption or
 etiology gives rise to        interference of       interference with
 change in structure and       normal bodily         normal
 functioning of the body.      processes or          physiological and
                               structures.           developmental
                                                     processes or
                                                     structure.
Impairment--Any loss or       Impairment--Anatomic  Impairment--Loss or
 abnormality of                al, physiological,    abnormalities of
 psychological,                mental or emotional   cognitive,
 physiological, or             abnormalities or      emotional,
 anatomical structure or       loss.                 physiological, or
 function at the organ level.                        anatomical
                                                     structure or
                                                     function, including
                                                     losses or
                                                     abnormalities, not
                                                     those attributable
                                                     to the initial
                                                     pathophysiology.
Disability--Any restriction   Functional            Functional
 or lack (resulting from an    limitation--Restric   limitation--Restric
 impairment) of ability to     tion or lack of       tion or lack of
 perform an activity in the    ability to perform    ability to perform
 manner or range considered    an action or          an action in the
 normal for a human being.     activity in the       manner or within
                               manner or within      the range
                               the range             consistent with the
                               considered normal     parts of an organ
                               that results from     or organ system.
                               impairment.
Handicap--A disadvantage      Disability--Inabilit  Disability--Inabilit
 resulting from an             y or limitation in    y or limitation in
 impairment or disability      performing socially   performing tasks,
 that limits or prevents       defined activities    activities, and
 fulfillment of a normal       and roles expected    roles to levels
 role depending on age, sex,   of individuals        expected within the
 and sociocultural factors.    within a social and   physical and social
                               physical              context.
                               environment.
                                                    Societal limitation--
                                                     Restrictions
                                                     attributable to
                                                     social policy and
                                                     barriers
                                                     (structural or
                                                     attitudinal) which
                                                     limits fulfillment
                                                     of roles and denies
                                                     access
                                                     opportunities that
                                                     are associated with
                                                     full participation
                                                     in society.
------------------------------------------------------------------------
Note: Information in column 1 is from International Classification of
  Impairments, Disabilities, and Handicaps, by the World Health
  Organization, 1980, Geneva, Switzerland: Author. Information in column
  2 is from Disability concepts Revisited: Implications for Prevention,
  by S.Z. Nagi, 1991, (p. 7) in Disability in America: Toward A National
  Agenda for Prevention by A.M. Pope and A.R. Tarlov (Eds.), 1991,
  Washington, DC: National Academy Press. Information in column 3 is
  from Research Plan for the National Center for Medical Rehabilitation
  Research, (p. 33), by the National Institute of Child Health and Human
  Development (1993) (NIH Publication No. 93-3509), Washington, DC: U.S.
  Government Printing Office.

    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

[[Page 57196]]

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.

[[Page 57197]]



     Table 3.--Degree of Activity Limitation Due to Chronic Conditions, by Demographic Characteristics: 1994
----------------------------------------------------------------------------------------------------------------
                                                                                    Limited in
                                                                     Unable to    amount or kind   Limited, but
         Characteristic             All persons    With activity  carry on major     of major      not in major
                                  (in thousands)    limitation       activity        activity        activity
                                                                     (percent)       (percent)       (percent)
----------------------------------------------------------------------------------------------------------------
All persons.....................         259,634              15             4.6             5.7             4.7
Age:
    Under 18 years..............          70,025             6.7             0.7             4.2             1.8
    18-44 years.................         108,178            10.3             3.2             3.9             3.1
    45-64 years.................          50,405            22.6             9.2             7.9             5.5
    65-69 years.................           9,685            36.7            16.7            11.9             7.3
    70 years and older..........          21,340            38.9             8.1            12.6            19.3
Sex:
    Male........................         126,494            14.4             4.8             5.3             4.3
    Female......................         133,139            15.7             4.4             6.1             5.2
Race:
    White.......................         214.496            15.1             4.4             5.8             4.9
    African American............          33,035            16.3             6.3             6.2             3.8
Family Income:
    Under $10,000...............          23,363              28            11.2             9.9             6.9
    $10,000-$19,999.............          37,271            21.1             7.3             7.7             6.2
    $20,000-$34,999.............          54,171            14.8             4.1             6.0             4.7
    $35,000 or more.............         100,302             9.4             1.9             3.9             3.6
Geographic Region:
    Northwest...................          50,610            14.3             4.3             5.6             4.3
    Midwest.....................          63,238            14.6             3.9             6.0             4.6
    South.......................          88,088            16.1             5.3             6.0             4.8
    West........................          57,697            14.7             4.6             5.0             5.0
Place of Residence:
    Metropolitan statistical
     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

[[Page 57198]]

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

[[Page 57199]]

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

[[Page 57200]]

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

[[Page 57201]]

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

[[Page 57202]]

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

[[Page 57203]]

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;

[[Page 57204]]

    (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,

[[Page 57205]]

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

[[Page 57206]]

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

[[Page 57207]]

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

[[Page 57208]]

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.

[[Page 57209]]

    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

[[Page 57210]]

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

[[Page 57211]]

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

[[Page 57212]]

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

[[Page 57213]]

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

[[Page 57214]]

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

[[Page 57215]]

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

[[Page 57216]]

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.,

[[Page 57217]]

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.

[[Page 57218]]

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.

References

Adams, P. F. & Marano, M. A. (1995). National Center for Health 
Statistics, Current estimates from the National Health Interview 
Survey, United States, 1994 Vital and Health Statistics: Series 10, 
No. 193. DHHS Pub. No. (PHS) 96-1521. Hyattsville, MD: National 
Center for Health Statistics.
Barker, P. R., Manderscheid, R. W., Hendershot, G. E., Jack, S. S., 
Schoenborn, C. A., & Goldstrom, I. (1992). Serious mental illness 
and disability in the adult household population: United States 
1989. Advance data from vital and health statistics: No. 28. 
Hyattsville, MD: National Center for Health Statistics.
Barriers Preventing Social Security Disability Recipients from 
Returning to Work: Hearings before the Subcommittee on Social 
Security of the Committee on Ways and Means, House of 
Representatives, 105th Congress, 1st Sess. (1997). (testimony of 
Judith Heumann).
Baumeister, A. A., Kupstas, F. D. & Woodley-Zanthos, P. (1993). The 
new morbidity: Recommendations for action and an updated guide to 
state planning for the prevention of mental retardation and related 
disabilities associated with socioeconomic conditions. Washington, 
DC: President's Committee on Mental Retardation.
Brandt, E. N. & Pope, A. M. (Eds). (1997). Enabling America: 
Assessing the role of rehabilitation science and engineering. 
Washington, DC: National Academy Press.
DeVivo, M. J. & Stover, S. L. (1995). Long-term survival and causes 
of death. In S. L. Stover, J. A. DeLisa, & G. G. Whiteneck (Eds.), 
Spinal cord injury: Clinical outcomes from the model systems. (pp. 
289-316). Gaithersburg, MD: Aspen Publishers
Domzal, C. (1998). Compendium of federal technology research that 
benefits persons with disabilities. Washington, DC: National 
Institute on Disability and Rehabilitation Research, U. S. 
Department of Education.
Dubos, Rene Jules, from Moberg, C. & Cohn, Z. A. (1991, May). 
Scientific American, 66-77. Exec. Order No. 13078, 63 Fed. Reg. 
13111 (1998).
Kochhar, S. & Scott, C. G. (1995, Spring). Disability patterns among 
SSI recipients. Social Security Bulletin.
Kraus, L. E., Stoddard, S. & Gilmartin, D. (1996). Chartbook on 
disability in the United States, 1996. An InfoUse Report. 
Washington, DC: National Institute on Disability and Rehabilitation 
Research.
Kuhn, T. (1962). The structure of scientific revolution. Chicago: 
University of Chicago Press.
LaPlante, M. P. (1993). Disability, health insurance coverage, and 
utilization of acute health services in the United States. 
Washington, DC: U.S. Department of Health and Human Services.
LaPlante, M. P. & Carlson, D. (1996). Disability in the United 
States: Prevalence and causes, 1992 Disability Statistics 
Rehabilitation Research and Training Center. Institute for Health 
and Aging, University of California, San Francisco, CA. Washington, 
DC: National Institute on Disability and Rehabilitation Research.
LaPlante, M. P., Hendershot, G. E., & Moss, A. J. (September 1992). 
Assistive technology devices and home accessibility features: 
Prevalence, payment, need, and trends. Advance data from vital and 
health statistics: No. 21. Hyattsville, MD: National Center for 
Health Statistics.
LaPlante, M. P., Kennedy, J., Kaye, H. S., & Wenger, B. L. (1996). 
Disability and employment. (Disability Statistics Abstract #11). 
Disability Statistics Rehabilitation Research and Training Center. 
Washington, DC: National Institute on Disability and Rehabilitation 
Research.
McNeil, J. M. (1993). Americans with disabilities: 1991-92. U. S. 
Bureau of the Census. Current Population Reports, (P70-33). 
Washington, DC: U.S. Government Printing Office.
Nagi, S. Z. (1991). Disability concepts revisited: Implications for 
prevention. In A. M. Pope & A. R. Tarlov (Eds.), Disability in 
America: Toward a national agenda for prevention (Appendix A, pp. 
309-327). Washington, DC: National Academy Press.
National Institute of Child Health and Human Development. (1993). 
Research plan for the National Center for Medical Rehabilitation 
Research (NIH Publication No. 93-3509). Washington, DC: U.S. 
Government Printing Office.
Pope, A. M. & Tarlov, A. R. (Eds.). (1991). Disability in America: 
Toward a national agenda for prevention. Washington, DC: National 
Academy Press.
Radabaugh, M. P. (1988). in National Council on Disability. (March 
4, 1993). Study on the financing of assistive technology devices and 
services for individuals with disabilities: A report to the 
President and the Congress of the United States, (p. 1). Washington, 
DC: Author.
Rehabilitation Act of 1973, as amended, 29 U.S.C. 706(8)(B).
Social Security Administration. (1993). Annual statistical 
supplement, 1993, to the Social Security Bulletin. Washington, DC: 
U.S. Department of Health and Human Services.
Social Security Administration. (1996). Highlights of Social 
Security data, January 1996. Baltimore, MD: Author.
Southwest Educational Development Laboratory. (1996, July). A review 
of the literature on dissemination and knowledge utilization. The 
National Center for the Dissemination of Disability Research. 
Austin, TX: Author.
Stoddard, S., Jans, L., Ripple, J. & Kraus, L. (1998, June). 
Chartbook on work and disability in the United States. An InfoUse 
Report. [On-line]. Available: http://www.infouse.com/disabilitydata/
Stoddard, S., Jans, L., Ripple, J. & Kraus, L. (June, 1998). 
Chartbook on work and disability in the United States. An InfoUse 
Report. [On-line]. Available: http://www.infouse.com/disabilitydata/
U. S. Bureau of the Census. (1998, June). Survey of Income and 
Program Participation, 1991. [On-line]. Available: http://
www.census.gov/hhes/www/disable/sipp

[[Page 57219]]

World Health Organization. (1980/1994). International Classification 
of impairments, disabilities, and handicaps: A manual of 
classification relating to the consequences of disease. Geneva, 
Switzerland: Author.

[FR Doc. 98-28474 Filed 10-23-98; 8:45 am]
BILLING CODE 4000-01-P