# ![](media/image1.jpeg){width="8.5in" height="11.0in"}  {#section .unnumbered}

# Table of Contents:

[Section One: Background 3](#section-one-background)

[Chapter 1: INTRODUCTION 4](#chapter-1-introduction)

[Table 1. - Contrast of Paradigms 10](#table-1.---contrast-of-paradigms)

[Chapter 2: DIMENSIONS OF DISABILITY
14](#chapter-2-dimensions-of-disability)

[Table 2. - Concepts in Models of Disability
16](#table-2.---concepts-in-models-of-disability)

[Table 3. Degree of Activity Limitation Due to Chronic Conditions, by
Demographic Characteristics: 1994
21](#table-3.-degree-of-activity-limitation-due-to-chronic-conditions-by-demographic-characteristics-1994)

[Section Two: NIDDR Research Agenda
26](#section-two-niddr-research-agenda)

[Chapter 3: EMPLOYMENT OUTCOMES 27](#chapter-3-employment-outcomes)

[Figures 1 and 2 28](#figures-1-and-2)

[Chapter 4: HEALTH AND FUNCTION 37](#chapter-4-health-and-function)

[Chapter 5: TECHNOLOGY FOR ACCESS AND FUNCTION
45](#chapter-5-technology-for-access-and-function)

[Chapter 6: INDEPENDENT LIVING AND COMMUNITY INTEGRATION
53](#chapter-6-independent-living-and-community-integration)

[Chapter 7: ASSOCIATED DISABILITY RESEARCH AREAS
61](#chapter-7-associated-disability-research-areas)

[Section Three: Priorities for Related Activities
68](#section-three-priorities-for-related-activities)

[Chapter 8: KNOWLEDGE DISSEMINATION AND UTILIZATION
69](#chapter-8-knowledge-dissemination-and-utilization)

[Chapter 9: CAPACITY BUILDING FOR REHABILITATION RESEARCH
75](#chapter-9-capacity-building-for-rehabilitation-research)

[Chapter 10: ENHANCING NIDDR\'S MANAGEMENT OF RESEARCH
81](#chapter-10-enhancing-niddrs-management-of-research)

[Appendices 91](#appendices)

[Appendix A. Abbreviations and Acronyms
91](#appendix-a.-abbreviations-and-acronyms)

[Appendix B. Planning Process and Participants
93](#appendix-b.-planning-process-and-participants)

[Appendix C. Steering Committee Members
101](#appendix-c.-steering-committee-members)

[Appendix D. NIDRR Program Mechanisms and Funding Patterns
105](#appendix-d.-nidrr-program-mechanisms-and-funding-patterns)

[Figure 1.1 106](#figure-1.1)

[Figure 1.2 106](#figure-1.2)

[Table 1 108](#table-1)

[References 110](#references)

#   {#section-1 .unnumbered}

# Section One: Background

The Long-Range Plan of the National Institute on Disability and
Rehabilitation Research (NIDRR) presents a five-year Agenda that will
advance the vital work being done in applied rehabilitation research.
NIDRR intends for this plan to balance the competing demands of consumer
relevance and scientific rigor, to present an agenda that is
scientifically sound and accountable, and as a result, to contribute to
the refinement of the nation's science and technology policy.

Two key elements on our agenda are designed to move the field
forward-the new paradigm of disability and the emerging universe of
disability.

The new paradigm is a conceptual foundation for organizing and
interpreting the phenomenon of disability. The paradigm provides a way
to apply scientific research to the goals and concerns of people with
disabilities. This disability paradigm, which will undergird NIDRR's
future research strategy, maintains that disability is a product of an
interaction between individual characteristics (e.g., conditions or
impairments, functional status, or personal and socioeconomic qualities)
and the characteristics of the natural, built, cultural, and social
environments.

The emerging universe is identified with new disabling conditions; new
causes for impairment; differential distribution within the population;
increased frequency of some impairments, including those associated with
aging; and new consequences of disability, particularly related to
social-environmental factors, life-span issues, and projected demands
for services and supports.

## Chapter 1: INTRODUCTION 

![](media/image2.png){width="1.8333333333333333in"
height="3.1145833333333335in"}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. These breakthroughs not only provide the potential
for longer and more fulfilling lives for individuals with disabilities,
they also reinforce the second major development---successful
independent living and civil rights advocacy by disabled people.

This intersection of scientific progress and the empowerment of disabled
people has increased momentum for disability research. These
developments highlight the importance of integrating disability research
into the mainstream of U.S. science and technology policy and into the
nation's economic and health care policies now more than ever.

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 society to accommodate them. 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 individuals with disabilities with
opportunities to improve their daily lives.

The mission of the National Institute on Disability and Rehabilitation
Research (NIDRR) is to generate, disseminate, and promote the full use
of new information that will (1) improve substantially the options for
disabled individuals to perform regular activities in the community and
(2) expand society's capacity to provide full opportunities and
appropriate support 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 (VR) program. By establishing
NIDRR1 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, leads to the creation of rational public policy,
and meets the needs of service providers for information on validated
and improved practices.

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 and 1998), charged this institute with the responsibility to
provide a comprehensive and coordinated program of research and related
activities to maximize the inclusion and social integration, employment,
and independent living of individuals of all ages with disabilities.
Particular emphasis was placed on improving the coordination and
effectiveness of services authorized under the act.

Other mandated activities 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 have disabilities or are
members of minority groups.

NIDRR is ideally positioned to facilitate the transfer of new knowledge
into practice as it shares administrative locations 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). Also, NIDRR's
linkage to the greater science community through its leadership of the
Interagency Committee on Disability Research (ICDR) provides an
opportunity to transfer advances in basic research to the agenda for
applied research and knowledge diffusion.

To further advance work in the field of applied research, the
legislation requires a plan,2 updated every five years, describing
NIDRR's future research agenda. This long-range plan presents a
five-year agenda focusing on consumer goals and scientific initiatives.
The plan has several distinct purposes:

to set broad general directions that will guide NIDRR's policies and use
of resources as the field of disability enters the 21st century;

to establish objectives for research and dissemination that will improve
the lives of individuals with disabilities and enable annual research
priorities to be formulated from it;

to describe a system for carrying out the plan in terms of annual
priorities, evaluations of the plan's implementation, and updates of the
plan as necessary; and

to place new emphasis on the management and administration of the
research endeavor.

The plan was developed in collaboration with a distinguished group of
NIDRR constituents---individuals with disabilities and their family
members and advocates, service providers, researchers, educators,
administrators, and policy-makers.

The policy-makers included the Commissioner of the Rehabilitation
Services Administration, members of the National Council on Disability
(NCD), and representatives from the Department of Health and Human
Services (DHHS). The plan 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 needs, including:

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;

the needs of rehabilitation service providers for information on new
techniques and technologies that will enable them to help rehabilitate
individuals with disabilities;

the needs of researchers to advance the capabilities of science as well
as the body of scientific knowledge; and

the needs of society and its leadership for strategies that will enable
people with disabilities to contribute to society; and

the need to transfer findings from basic to applied research.

Footnotes

1\. Established as the National Institute of Handicapped Research, the
institute's name was changed to the National Institute on Disability and
Rehabilitation Research by the 1986 amendments to the Rehabilitation
Act.

2\. As a component of OSERS within the Department of Education, NIDRR is
guided by the Department's strategic plan, the OSERS' 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 five-year program plan from
NIDRR---one that identifies research needs and 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.

Accomplishments

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. More advances
occur every day.

Today, it is commonplace to see people in wheelchairs traveling in
airplanes and private vehicles, people who are blind using computers,
and people who are deaf attending the theater. Individuals who have
significant disabilities have been and are being recognized as world
leaders in the arts and sciences. These developments owe much to
research advances at both the individual and societal levels.

Advances at the Individual Level

Research---and its use to improve practice, inform policy, and raise
awareness---has changed the lives and the outlook for individuals with
disabilities and their families.

For example, the life expectancy of individuals who are paralyzed from a
spinal cord injury has risen continuously over the past 25 years (DeVivo
& Stover 1995). One reason is that the concerted efforts of U.S.
researchers, most of whom received NIDRR support, have greatly reduced
the number of severe urinary tract infections and related complications,
thereby lowering renal failure as a cause of death from first to 12th
place over the past two decades. Decubitus ulcers also have been a
serious problem for people living with a spinal cord injury, multiple
sclerosis, the aftereffects of a stroke, and other immobilizing
conditions. Decubitus ulcers are destructive and costly to treat,
resulting in lost workdays, high medical expenses, hospitalizations, and
additional complications. Medical researchers and rehabilitation
engineers have developed preventive measures, including seating,
cushioning, and positioning devices; behavioral protocols; and improved
treatment methods. These efforts have greatly reduced the time needed
for medical treatment of decubiti and the cost of this treatment.

Rehabilitation engineering research has been responsible for the
application of new materials in the design of wheelchairs and orthotic
and prosthetic devices; these new materials 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
faster than Olympic runners. In the Paralympics, runners using
prosthetic legs have repeatedly demonstrated impressive speeds. In
everyday life, people who use wheelchairs have benefited from
lightweight, transportable chairs as well as powered chairs, which
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 people with
disabilities. During this period, technology has greatly enhanced the
accommodation of disabilities, self-awareness has increased the
expectations of and for people with disabilities, and advocacy has
resulted in the recognition of the rights of people with disabilities to
societal access and reasonable accommodations.

NIDRR-supported research also has facilitated the inclusion of people
with mental retardation and those with emotional disabilities in
communities, workplaces, and lifelong learning experiences. In doing so,
NIDRR researchers have documented patterns of deinstitutionalization;
developed techniques for behavior management that have enabled
individuals to leave institutions and live and work in the community;
strengthened self-advocacy and peer-support programs; developed
technological solutions to improve access to housing, communications,
and work; and developed strategies to increase the employment of
individuals with cognitive and emotional disabilities and to support
families of the disabled in their important role.

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 people 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 changing the disability paradigm and
expanding the word disability to include environmental 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 disabilities among
the nation's aging population further challenge the disability research
field. The research field must develop ways to measure and address the
impact of environmental factors on the phenomenon of disability.

NIDRR has led the way in the research for a new conceptual foundation to
organize and interpret the phenomenon of disability---a new paradigm of
disability.

This paradigm is a construction of both the disability and scientific
communities and provides a mechanism to apply 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
(1962) viewed a paradigm as a time-limited model for framing problems
and solutions within any discipline. The term paradigm is used above 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 the characteristics of the individual
(e.g., conditions or impairments, functional status, or personal and
social qualities) and the characteristics of the natural, built,
cultural, and social environments. The construct of disability is
located on a continuum from enablement to disablement. Personal as well
as environmental characteristics 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 accessible and inaccessible, culturally
inclusive and exclusive, accommodating and unaccommodating, and
supportive and unsupportive. For example, on a societal level,
institutions and the built environment have been designed for a limited
segment of the population. Researchers should explore new ways of
measuring and assessing disability in context, taking into account the
effects 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 by comparing it with the
paradigm it replaces and by clarifying the importance the new 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 a deficit in an individual that prevents the
individual from performing certain functions or activities. This
underlying assumption about disability has 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 the 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, changes in the focus of research, and changes
in the way research is managed and conducted.

Issues Regarding Definition

One of the fundamental consequences of the new paradigm is the need to
change definitions. The definition of disability is critical to building
a conceptual model that identifies relevant components of disablement
and their relationships to one another, and the dynamic mechanisms by
which they change.

Typically, definitions of disability have varied, depending on their
intended use. From a research perspective, the definitions used to count
and describe disabled people have been important, while from the policy
perspective, these definitions are critical to establishing eligibility
for benefits and services.

The majority of federal definitions of disability----including those in
the Rehabilitation Act, the ADA, and the National Health Interview
Survey (NHIS)----originated 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, connects the disability with the individual. This is
understandable not only because changing a paradigm is complex and takes
a long time, but also because there has been no system to define,
classify, and measure the environmental components of disability or a
model to describe and quantify the interaction of environmental and
individual variables.

This need to change definitions must be addressed by activities, such as
the attempt to revise the International Classification of Impairments,
Disabilities, and Handicaps (World Health Organization 1980), to better
define and measure the factors external to an individual that contribute
to his or her disability.

### Table 1. - Contrast of Paradigms

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

                  \"Old\" Paradigms       \"New\" Paradigms

  Definition of   An individual is        An individual with an impairment
  Disability:     limited by his/her      requires an accommodation to
                  impairment or           carry out life activities.
                  condition.              

  Strategy to     Fix the individual,     Remove barriers, create access
  Address         correct the deficit.    through accommodation and
  Disability:                             universal design, and promote
                                          wellness and health.

  Method to       Provision of medical,   Provision of supports, (e.g.,
  Address         vocational, or          assistive technology, personal
  Disability:     psychological           assistance services, job coach).
                  rehabilitation          
                  services.               

  Source of       Professionals,          Peers, mainstream service
  Intervention:   clinicians, and other   providers, consumer information
                  rehabilitation service  services.
                  providers.              

  Entitlements:   Eligibility for         Eligibility for accommodations
                  benefits based on       seen as a civil right.
                  severity of impairment. 

  Role of         Object of intervention, Consumer or customer, empowered
  Disabled        patient, beneficiary,   peer, research participant,
  Individual:     research subject.       decision-maker.

  Domain of       A medical \"problem\"   A socio-environmental issue
  Disability:                             involving accessibility,
                                          accommodations, and equity.
  --------------- ----------------------- ---------------------------------

*Note:* This table is adapted from materials prepared for this
*Long-Range Plan* by Gerben DeJong and Bonnie O\'Day from the National
Rehabilitation Hospital Research Center in Washington, D.C.

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 the 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. New measures must enable researchers to predict and
understand changes in the prevalence and distribution of disabilities
that illustrate the link between underlying social and environmental
conditions---poverty, race, culture, isolation, and the age
continuum---and the emergence of new causes of disability, new
disability syndromes, and the differential distribution of disabilities
among various populations in our society.

Concern is focused increasingly on vulnerable populations, as
researchers find more evidence that disability and the risk of
disability are disproportionately concentrated in specific populations:
those in poverty, those who lack access to state-of-the-art preventions
or interventions, and those who are exposed to additional external or
lifestyle risk factors. There are new impairments, exacerbated
impairments, and 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,
prenatal and other health care, access to preventive care, and health
information. These individuals also experience more incidents of
inter-personal 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 to be
discussed in \"Chapter 2.\"

New Focus of Research Inquiries

The new paradigm adds or increases the relative emphasis on certain
areas of inquiry. Research must develop new methods to focus on the
interface between people 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 people 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 the prevention and
alleviation of secondary disabilities, co-existing conditions, and
health maintenance over the lifespan. Research must focus on the
development and evaluation of environmental options in the built
environment and the commun-ications environment. In developing these
options, researchers will incorporate universal design and modular
design principles and the use of assistive technology.

Research will lead to a better understanding of the context and trends
in our society that affect the total environment in which people with
disabilities live and in which disability will be manifested. These
influences 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.

Researchers must understand the public policy context in which
disability is addressed, ignored, or exacerbated. General fiscal and
economic policies, as well as more specific policies on employment, the
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 people. Their frequent incon-sistencies, contradictions, and
oversights can inhibit the attainment of personal and societal goals for
people with disabilities.

Research Management

The new paradigm requires new models for managing the research
enterprise----including 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. NIDRR will expand training in disability and
rehabilitation research to include disciplines such as architecture and
business. There will be new venues for conducting research and a need
for validated methodologies to conduct research on dynamic
person-environment interactions, often 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 and services will be
subject to assessment.

Moreover, interdisciplinary and collaborative research is important for
explicating the multidimensional qualities of disability. Only through
research coordination and collaboration can basic research findings 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
said, \"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 types of disability and rehabilitation research, and is
committed to making research an inclusive, collaborative, and
coordinated undertaking.

Organization of the Long-Range Plan

This introductory chapter has set the framework for understanding
NIDRR's mission and approach. After the next chapter, \"Dimensions of
Disability,\" \"Section Two\" will discuss an agenda for research that
will provide 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 the capacity of the field through training researchers
and users of research. Section Three will focus on these activities.

NIDRR intends this five-year plan to balance the competing demands of
consumer relevance and scientific rigor. To this end, the research
agenda is designed to be responsive, scientifically sound, and
accountable. Ultimately, NIDRR aims to help refine the nation's science
and technology.

## 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 categorizing
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. The law describes a person with a disability as
follows:

\...any person who (i) has a physical or mental impairment which
substantially limits one or more of such person's major life activities,
(ii) has a record of such an impairment, or (iii) is regarded as having
such an impairment (29 U.S.C. 706(8)(B)).

This definition is similar to those contained in the ADA, the Assistive
Technology Act of 1998, and the Technology-Related Assistance for
Individuals with Disabilities Act (Tech Act).

The impairments that cause limitations in activities may relate to
genetic conditions or to acquired diseases or traumas. The extent of a
disability and the conditions associated with a disability are
significant to individuals, to 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 other 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 has an
impairment that requires an accommodation or intervention rather than as
a person who is limited solely by a condition. This new approach derives
from the interaction between personal variables and environmental
conditions. Because accommodations can address person-centered factors
as well as socioenvironmental 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 to measure it as
well as consistent definitions for data collection. In recent years,
however, a number of efforts to develop conceptual frameworks to
organize information about disability have been initiated (see table 2).

### Table 2. - Concepts in Models of Disability

+-----+------------------+------------------+------------------------+
| IC  |                  | Nagi/1991 IOM    | NCMRR                  |
| IDH |                  |                  |                        |
+-----+------------------+------------------+------------------------+
| **  |                  | **Active         | Pathophy               |
| Dis |                  | pathology*       | siology\--Interruption |
| eas |                  | *\--Interruption | or interference with   |
| e** |                  | or interference  | normal physiological   |
| \-- |                  | of normal bodily | and developmental      |
| Som |                  | processes or     | processes or           |
| eth |                  | structure.       | structure.             |
| ing |                  |                  |                        |
| ab  |                  |                  |                        |
| nor |                  |                  |                        |
| mal |                  |                  |                        |
| wit |                  |                  |                        |
| hin |                  |                  |                        |
| the |                  |                  |                        |
| in  |                  |                  |                        |
| div |                  |                  |                        |
| idu |                  |                  |                        |
| al; |                  |                  |                        |
| et  |                  |                  |                        |
| iol |                  |                  |                        |
| ogy |                  |                  |                        |
| gi  |                  |                  |                        |
| ves |                  |                  |                        |
| r   |                  |                  |                        |
| ise |                  |                  |                        |
| to  |                  |                  |                        |
| cha |                  |                  |                        |
| nge |                  |                  |                        |
| in  |                  |                  |                        |
| str |                  |                  |                        |
| uct |                  |                  |                        |
| ure |                  |                  |                        |
| and |                  |                  |                        |
| fu  |                  |                  |                        |
| nct |                  |                  |                        |
| ion |                  |                  |                        |
| ing |                  |                  |                        |
| of  |                  |                  |                        |
| the |                  |                  |                        |
| bo  |                  |                  |                        |
| dy. |                  |                  |                        |
+-----+------------------+------------------+------------------------+
| **I |                  | **Impairment     | *                      |
| mpa |                  | **\--Anatomical, | *Impairment**\--Losses |
| irm |                  | physiological,   | or abnormalities of    |
| ent |                  | mental or        | cognitive, emotional,  |
| s** |                  | emotional        | physiological, or      |
| \-- |                  | abnormalities or | anatomical structure   |
| Any |                  | loss.            | or function, including |
| l   |                  |                  | losses or              |
| oss |                  |                  | abnormalities that are |
| or  |                  |                  | not those attributable |
| ab  |                  |                  | to the initial         |
| nor |                  |                  | pathophysiology.       |
| mal |                  |                  |                        |
| ity |                  |                  |                        |
| of  |                  |                  |                        |
| ps  |                  |                  |                        |
| ych |                  |                  |                        |
| olo |                  |                  |                        |
| gic |                  |                  |                        |
| al, |                  |                  |                        |
| ph  |                  |                  |                        |
| ysi |                  |                  |                        |
| olo |                  |                  |                        |
| gic |                  |                  |                        |
| al, |                  |                  |                        |
| or  |                  |                  |                        |
| a   |                  |                  |                        |
| nat |                  |                  |                        |
| omi |                  |                  |                        |
| cal |                  |                  |                        |
| str |                  |                  |                        |
| uct |                  |                  |                        |
| ure |                  |                  |                        |
| or  |                  |                  |                        |
| fu  |                  |                  |                        |
| nct |                  |                  |                        |
| ion |                  |                  |                        |
| at  |                  |                  |                        |
| the |                  |                  |                        |
| or  |                  |                  |                        |
| gan |                  |                  |                        |
| lev |                  |                  |                        |
| el. |                  |                  |                        |
+-----+------------------+------------------+------------------------+
| **  |                  | **Functional     | **Functional           |
| Dis |                  | limitation       | limitation\--A         |
| abi |                  | \--**Restriction | r**estriction or lack  |
| lit |                  | or lack of       | of ability to perform  |
| y** |                  | ability to       | an action in the       |
| \-- |                  | perform an       | manner or within the   |
| Any |                  | action or        | range consistent with  |
| re  |                  | activity in the  | the parts of an organ  |
| str |                  | manner or range  | or organ system.       |
| ict |                  | considered       |                        |
| ion |                  | normal -- which  |                        |
| or  |                  | results from an  |                        |
| l   |                  | impairment.      |                        |
| ack |                  |                  |                        |
| (   |                  |                  |                        |
| res |                  |                  |                        |
| ult |                  |                  |                        |
| ing |                  |                  |                        |
| f   |                  |                  |                        |
| rom |                  |                  |                        |
| an  |                  |                  |                        |
| im  |                  |                  |                        |
| pai |                  |                  |                        |
| rme |                  |                  |                        |
| nt) |                  |                  |                        |
| of  |                  |                  |                        |
| a   |                  |                  |                        |
| bil |                  |                  |                        |
| ity |                  |                  |                        |
| to  |                  |                  |                        |
| p   |                  |                  |                        |
| erf |                  |                  |                        |
| orm |                  |                  |                        |
| an  |                  |                  |                        |
| ac  |                  |                  |                        |
| tiv |                  |                  |                        |
| ity |                  |                  |                        |
| in  |                  |                  |                        |
| the |                  |                  |                        |
| man |                  |                  |                        |
| ner |                  |                  |                        |
| or  |                  |                  |                        |
| wit |                  |                  |                        |
| hin |                  |                  |                        |
| the |                  |                  |                        |
| ra  |                  |                  |                        |
| nge |                  |                  |                        |
| c   |                  |                  |                        |
| ons |                  |                  |                        |
| ide |                  |                  |                        |
| red |                  |                  |                        |
| nor |                  |                  |                        |
| mal |                  |                  |                        |
| for |                  |                  |                        |
| a   |                  |                  |                        |
| hu  |                  |                  |                        |
| man |                  |                  |                        |
| bei |                  |                  |                        |
| ng. |                  |                  |                        |
+-----+------------------+------------------+------------------------+
| *   |                  | **D              | **Disability**\--An    |
| *Ha |                  | isability**\--An | inability or           |
| ndi |                  | inability or     | limitation in          |
| cap |                  | limitation in    | performing tasks,      |
| \-- |                  | performing       | activities, and roles  |
| **A |                  | socially defined | to levels expected     |
| dis |                  | activities and   | within the physical    |
| adv |                  | roles expected   | and social context.    |
| ant |                  | of individuals   |                        |
| age |                  | within a social  |                        |
| res |                  | and physical     |                        |
| ult |                  | environment.     |                        |
| ing |                  |                  |                        |
| f   |                  |                  |                        |
| rom |                  |                  |                        |
| an  |                  |                  |                        |
| i   |                  |                  |                        |
| mpa |                  |                  |                        |
| irm |                  |                  |                        |
| ent |                  |                  |                        |
| or  |                  |                  |                        |
| d   |                  |                  |                        |
| isa |                  |                  |                        |
| bil |                  |                  |                        |
| ity |                  |                  |                        |
| t   |                  |                  |                        |
| hat |                  |                  |                        |
| lim |                  |                  |                        |
| its |                  |                  |                        |
| or  |                  |                  |                        |
| pr  |                  |                  |                        |
| eve |                  |                  |                        |
| nts |                  |                  |                        |
| fu  |                  |                  |                        |
| lfi |                  |                  |                        |
| llm |                  |                  |                        |
| ent |                  |                  |                        |
| of  |                  |                  |                        |
| a   |                  |                  |                        |
| r   |                  |                  |                        |
| ole |                  |                  |                        |
| c   |                  |                  |                        |
| oms |                  |                  |                        |
| ide |                  |                  |                        |
| red |                  |                  |                        |
| nor |                  |                  |                        |
| mal |                  |                  |                        |
| for |                  |                  |                        |
| a   |                  |                  |                        |
| p   |                  |                  |                        |
| art |                  |                  |                        |
| icu |                  |                  |                        |
| lar |                  |                  |                        |
| a   |                  |                  |                        |
| ge, |                  |                  |                        |
| s   |                  |                  |                        |
| ex, |                  |                  |                        |
| and |                  |                  |                        |
| s   |                  |                  |                        |
| oci |                  |                  |                        |
| ocu |                  |                  |                        |
| ltu |                  |                  |                        |
| ral |                  |                  |                        |
| fa  |                  |                  |                        |
| cto |                  |                  |                        |
| rs. |                  |                  |                        |
+-----+------------------+------------------+------------------------+
|     |                  |                  | **Societal             |
|     |                  |                  | limit                  |
|     |                  |                  | ation\--**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.               |
+-----+------------------+------------------+------------------------+
| *   | Information in   |                  |                        |
| Not | column 1 is from |                  |                        |
| e:* | International    |                  |                        |
|     | Classification   |                  |                        |
|     | of Impairments,  |                  |                        |
|     | Disabilities,    |                  |                        |
|     | and Handicaps,   |                  |                        |
|     | by the World     |                  |                        |
|     | Health           |                  |                        |
|     | Organization,    |                  |                        |
|     | 1980, Geneva,    |                  |                        |
|     | Switzerland:     |                  |                        |
|     | World Health     |                  |                        |
|     | Organization.    |                  |                        |
|     |                  |                  |                        |
|     | 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 the following:

-   The ICIDH, which the WHO developed in 1980, 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.

-   The Nagi model (Nagi), was presented by the Institute of Medicine
    (IOM) in its 1991 Disability in America report (Pope & Tarlov). The
    model was revised in the 1997 report, titled Enabling America
    (Brandt & Pope). The 1991 IOM Report posits that a disability is a
    function of the interaction of individuals with their social and
    physical environments. The revised Nagi model describes the
    environment as including the natural environment, the built
    environment, the culture, the economic system, the political system,
    and psychological factors.

-   The new Nagi model includes a state of no disabling condition. The
    state of disability is not included because disability is not viewed
    as inherent in the person, but rather as a function of the
    interaction of the individual and the environment.

-   The schematic adopted by the National Center for Medical
    Rehabilitation Research (NCMRR) in its Research Plan (National
    Institute of Child Health and Human Development) added the concept
    of societal limitation.

Continuum of Enablement----Disablement

The most widely used conceptual frameworks applied to disability and
rehabilitation research share 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 urges the adoption of a new conceptual
framework as a model for the enablement-disablement process (Brandt &
Pope). 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 socioenvironmental 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 related conditions. This study
of the dynamic interaction among various individual and environmental
variables requires NIDRR to increase its 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 one of two
types (1) program data, which focus on the recipients of federal benefit
or service programs, or (2) national surveys that focus on perceived
limitations in activities caused by health conditions. Both program and
survey data focus on the physical or mental impairment as the cause of
the limitation. This is a reductionist approach that discounts social
and environmental factors or assumes that these factors are subsumed
within individual attributes.

The National Health Interview Survey (NHIS) and the Survey of Income and
Program Participation (SIPP) are the two most widely used sources of
survey data to describe the population of individuals with disabilities.
Researchers currently are analyzing data from the Disability Supplement
to the NHIS; these analyses will yield much-needed information on people
with disabilities. The development of the Disability Supplement was a
collaborative effort by federal agencies concerned with disability
issues. While the Disability Supplement data have enormous value, the
supplement, like other data sources, doesn't measure the environmental
factors (social or physical) that contribute to disabilities, nor the
interaction between the person and his or her 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 collection methods----not only fail to
address important new concepts of disability, but also are limited in
other ways. The 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 people with cognitive,
sensory, or language limitations. Many federal data collection efforts,
as well as most private ones, do not routinely include information about
people with disabilities in their data collection and reporting.
Improving data quality and availability will be a key goal of NIDRR over
the next five years.

Particular problems exist in defining and quantifying disability in
children. Many service program staff rely on diagnostic categories for
eligibility, and even those who 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). A U.S. Department of
Education effort, IDEA mandates that schools have the full range of
services necessary to provide a free and appropriate public education
for children with disabilities. According to OSEP's 1995-96 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 curricula and teaching methods, as well as teacher
training----NIDRR has concentrated its research on other areas
concerning disabled children. These issues include family-child
relations, social relationships, community integration, medical
technologies that may replace or substitute for function,
accommodations, and support available to families. NIDRR research also
has a role in addressing the critical problems of succeeding in the
transition from school to adult life in the community, to work, and to
adult service systems. In a broader context, it is important to note
that 5.5 percent of all American families have one or more children with
a disability (LaPlante, Carlson, Kaye, & Wenger). Children with
disabilities are more likely to live in low-income families and in
families headed by single mothers.

Prevalence of Disability

Disability research is very important due to the fact that disabilities
are so frequent and widespread in the United States. The following data
about disabilities 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 other conditions (15 percent)
(Pope & Tarlov 1991). The SIPP identified 48.9 million people who
reported themselves as limited in performing functional activities or in
fulfilling a socially defined role or task. Of these, 24.1 million
people were identified as having a \"severe disability\" (Kraus,
Stoddard, & Gilmartin 1996). Both surveys excluded people 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 million to 48 million Americans with
disabilities.

Both the NHIS and SIPP focus on limitations in performing major life
activities that are due to a physical or mental condition. Both groups
also provide data, however, on people who are limited in performing or
unable to perform activities of daily living (ADLs)---such as eating,
bathing, dressing, toileting, or moving around without assistance from
others or the use of devices. Data are also collected on those who have
trouble with instrumental activities of daily living (IADLs)----such as
performing basic home care, shopping, preparing meals, telephoning, and
managing money. Approximately 8 million people reported having
difficulty with ADLs, and some 4 million of them said they needed the
assistance of another person (McNeil 1993).

The range of these estimates---from approximately 4 million people who
need help simply to sustain their lives to the 40 million who report any
kind of activity limitation---illustrates the risks in discussing the
disabled population 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 in many ways throughout the population,
according to characteristics such as age, gender, race, ethnicity, and
both the region and size of the locality in which a person resides. The
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. These data indicate that disability
is very likely linked to other social factors, reinforcing the need to
address disability in a broad context.

### Table 3. Degree of Activity Limitation Due to Chronic Conditions, by Demographic Characteristics: 1994

  -------------------- ------------ ------------- ----------- ----------- -----------
  Characteristic       All persons  With Activity Unable to   Limited in  Limited,
                       (in          Limitations   carry on    amount or   but not in
                       thousands)                 major       kind of     major
                                                  activity    major       activity
                                                  (percent)   activity    (percent)
                                                              (percent)   

  All persons          259,634      15.0          4.6         5.7         4.7

  Age:\                70,025\      6.7\          0.7\        4.2\        1.8\
  Under 18 years\      108,178\     10.3\         3.2\        3.9\        3.1\
  18-44 years\         50,405\      22.6\         9.2\        7.9\        5.5\
  45-64 years\         9,685\       36.7\         16.7\       11.9\       7.3\
  65-69 years\         21,340       38.9          8.1         12.6        19.3
  70 years and older                                                      

  Sex:\                126,494\     14.4\         4.8\        5.3\        4.3\
  Male\                133,139      15.7          4.4         6.1         5.2
  Female                                                                  

  Race:\               214.496\     15.1\         4.4\        5.8\        4.9\
  White\               33,035       16.3          6.3         6.2         3.8
  African American                                                        

  Family Income:\      23,363\      28.0\         11.2\       9.9\        6.9\
  Under \$10,000\      37,271\      21.1\         7.3\        7.7\        6.2\
  \$10,000-\$19,999\   54,171\      14.8\         4.1\        6.0\        4.7\
  \$20,000-\$34,999\   100,302      9.4           1.9         3.9         3.6
  \$35,000 or more                                                        

  Geographic Region:\  50,610\      14.3\         4.3\        5.6\        4.3\
  Northwest\           63,238\      14.6\         3.6\        6.0\        4.6\
  Midwest\             88,088\      16.1\         5.3\        6.0\        4.8\
  South\               57,697       14.7          4.6         5.0         5.0
  West                                                                    

  Place of Residence:\ 203,079\     14.3\         4.4\        5.5\        4.5\
  Metropolitan         79,510\      18.8\         5.4\        5.9\        4.5\
  statistical area     123,570\     13.4\         3.8\        5.2\        4.5\
  (MSA)\               56,554       17.6          5.4         6.6         5.6
  Central city\                                                           
  Not central city\                                                       
  Not MSA                                                                 
  -------------------- ------------ ------------- ----------- ----------- -----------

  --------- -----------------------------------------------------------------
  Source:   P. F. Adams and M.A. Marano, Current Estimates from the National
            Health Interview Survey, Series 10, No. 193, from Tables 67-68,
            Hyattsville, MD: National Center for Health Statistics, 1994.

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

Emerging Universe of Disability

NIDRR has begun to focus on an emerging universe of disability, in which
the conditions associated with disability, their distribution in the
population, and their causes and consequences are substantially
different from those in the traditional disability population.

This emerging universe is identified with new disabling conditions; new
causes for impairments; differential distributions within the
population; increased frequency of some impairments; and different
consequences of disability. Such consequences relate 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, babies with a low
birth weight, a 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 for 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
syndrome, chronic fatigue syndrome, 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 people, is another demographic factor that will influence
issues to be addressed by applied research. Many emergent disabilities,
including those attributed to violence, abuse, and poverty, have a
higher incidence among women and are particularly likely to affect women
who already have disabilities.

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 people with disabilities, it is valuable to present a brief overview
of the employment status of people with disabilities.

LaPlante & Carlson (1996) reported that 19 million Americans (ages 18 to
69) with an impairment or health problem were unable to work or were
limited in the amount or type of work they could perform. According to
the CPS, about 10 percent of the population between ages 16 and 64 had
work limitations (different age ranges reflect changing concepts of
working age) (LaPlante, Kennedy, Kaye, & Wenger 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 have shown that among
adults with a serious mental illness (an estimated 3.3 million people),
29 percent are unable to work, and 18 percent are limited in their
ability to work (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 people 21 to 64 years of age,
the employment rate was 81 percent for people with no disability, 67
percent for people with a disability that was not severe, and 23 percent
for people with a severe disability (McNeil 1993). Only 21 percent of
people needing personal assistance with ADLs or IADLs were employed
(U.S. Bureau of the Census 1998). The unemployment rate for people with
disabilities, which counts only those people in the labor force, was
12.6 percent, more than twice the unemployment rate of nondisabled
Americans (Stoddard, Jans, Ripple, & Kraus 1998).

Disabled people who work full-time typically earn less than nondisabled
workers, with the earnings gap widening with age and the severity of the
disability. People 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 people 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 people under age 65 received SSI
benefits due to disability and poverty (Kochhar & Scott 1995). More than
one-half of these people 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 the numbers of SSDI and SSI recipients can be
attributed to the following: changing the program (such as initiating
different eligibility requirements and outreach), shifting from other
income support categories, changing the stability of employment and
private health insurance, and 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 the need
for personal assistance services illuminate some of the characteristics
of the disabled population. Of the estimated 48.9 million people 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 more than 27 million people with disabilities are married. An
estimated 8.3 million individuals with disabilities live in a household
with their spouse and children under age 18, 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 relative with a
disability (as measured by having an activity limitation). This rate for
families is much higher than the rate for 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 Long-Range Plan highlighted some important
disability statistics that illustrate the scope of disability in the
United States. Throughout the Plan, significant data also are
interspersed about the use of assistive technology, access to health
care, labor force participation, and community living. In addition,
Chapter 7 addresses the need for future research in disability data
collection.

Overall, the 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 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, 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.

Providers of goods and services in the marketplace---whether purveyors
of travel and recreation, assistive devices, clothing, or any other
commodities---want estimates of the size and characteristics of the
potential disability market for their products. It is becoming
increasingly important to provide these market estimates and to package
data to meet the needs of manufacturers and distributors, so businesses
can expand the variety of goods and services available to people with
disabilities.

It is also true that, while the presence of a disability may present
significant challenges to individuals and families, society demonstrates
a growing capacity to assist people with disabilities to meet their
needs for equity and access through new discoveries in research,
improved service methods, and informed policy decisions.

# Section Two: NIDDR Research Agenda

Several significant principles guide this discussion of NIDRR's research
agenda. First, a research agenda must allow for flexibility to
facilitate response to evolving research questions. In a world where
technological innovations and new research results can affect the
relevance of other ongoing research, NIDRR must be ready to update its
response to changes in the field as they occur and to readily
incorporate its response into the research program. NIDRR research will
focus on demonstrating outcomes that expand the knowledge base and that
meet the needs of people with disabilities. Documenting outcomes is
critical to demonstrating value, which is increasingly important in a
resource-limited society. As mentioned earlier, NIDRR-sponsored research
also must balance the demands of consumers for useful solutions with the
demands of science for careful and rigorous methodology.

NIDRR's prior research efforts have addressed most aspects of the lives
of people with disabilities. Over time, a framework has emerged that
relates these aspects to maximum independence and participation. As
explained in previous sections, the new paradigm of disability
emphasizes the contextual nature of disability as a product of
individual and societal factors. This important paradigm shapes the
future research agenda described in this section. This agenda represents
our current best thinking about those areas where NIDRR research can
help people with disabilities maximize their independence and become
fully integrated into Ameni can society. These areas include Employment
Outcomes, Health and Function, Technology for Access and Function,
Independent Living and Community Integration, and Associated Disability
Research Areas.

## 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
that it is clear we have many more 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

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 people 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 people
with disabilities are in the labor force, and less than one-quarter are
working full-time (see figure 1). Fully two-thirds of working-age people
with disabilities are not in the labor force. Some 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 a lack of physical access to jobs.

While the comparative rates of labor force participation and full-time
employment are two indicators of the workforce status of individuals
with disabilities, a comparison of earnings is even more striking. In
figure 2, SIPP data illustrate the discrepancies in earnings between
disabled and nondisabled working men and women.

Even when people with disabilities are employed full-time, their
earnings are substantially lower than those of people without
disabilities. The severity of disability also correlates inversely with
the level of earnings. Disparities in employment rates and earnings are
even greater for disabled individuals from minority backgrounds and
those with the most significant disabilities (Stoddard, Jans, Ripple, &
Kraus 1998).

### Figures 1 and 2

![](media/image3.png){width="4.229861111111111in"
height="6.420138888888889in"}

Economy and Labor Force Issues

Several emerging characteristics of the nation's labor market exacerbate
the difficulties that people with disabilities experience in their
attempts to gain employment and even in their motivation to seek
employment. Downsizing, for example, has led to a lower percentage of
people with stable, long-term jobs with benefits. Many businesses and
industries are 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 who receive their wages or
salaries directly from the company. Many of these jobs lack security and
benefits, particularly health insurance, which most people with
disabilities require to participate in the labor force.

In addition, many business spokespeople and educators point to the need
for highly educated, highly skilled workers if the nation is to succeed
in an increasingly competitive global economy. The reality, however, is
more complex. On the one hand, the availability of jobs requiring
specialized skills combined with rapid advances in technology may
improve the employment prospects of people 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 people 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
people----especially those with significant disabilities----has been the
State-Federal Vocational Rehabilitation (VR) service program.

The program is 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 with a 22 percent state match for a
total of about \$2.7 billion, 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 support services (e.g., training, assistive
technology, and help obtaining the appropriate tools) that will enable
the consumer to find and keep a job.

In 1997, the OSERS Assistant Secretary testified before Congress on
"Barriers Preventing Social Security Recipients from Returning to Work."
She noted, "As a group, people who achieve an employment outcome as a
result of vocational rehabilitation services each year show notable
gains in their economic status." The percentage of people with
disabilities who reported their earnings as their primary source of
support increased from 18 percent at the time they applied to the VR
program to 82 percent at the time they left the program (OSERS Assistant
Secretary 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 percent to 80 percent.

Nevertheless, federal policy-makers, consumers, advocates, and
rehabilitation professionals remain concerned that people 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 people qualifying for SSI and
SSDI. In addition, the public costs of these cash benefits are
substantially increased by the addition of public support for associated
Medicare and 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 and SSDI beneficiaries for
services at a proportionally higher rate than nonbeneficiaries,
typically has less success with this group; that is, relatively fewer
SSI and SSDI beneficiaries than nonbeneficiaries achieve employment
outcomes 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 labor force. 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 that
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 also because the basic,
implicit foundations of vocational rehabilitation counseling were
developed for people who, in terms of demographic characteristics,
work-related experience, and service needs, were 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 people with disabilities.

Community-Based Employment Services

NIDRR's research agenda concerning employment addresses, but is not
limited to, the State-Federal VR program, administered by NIDRR's sister
agency, the Rehabilitation Services Administration (RSA). While the VR
program plays an important role, there is a wide range of other federal,
state, and local funding sources for, and providers of, employment
programs. These include approximately 7,000 community-based
rehabilitation programs (CRPs), which serve about 800,000 people 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 selecting service providers becomes more widely
implemented. To respond to these developments, community rehabilitation
programs must prepare 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.

There are still a number of questions about how these changes may
potentially influence the delivery of community rehabilitation services.
For instance, the efficacy of different models designed to maximize
competitive employment outcomes for people 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. This knowledge may also shape the future
direction of initiatives to enable more people with significant
disabilities to obtain and retain meaningful employment.

Employer Roles and Workplace Supports

Employers play a key role in deciding employment outcomes for disabled
people by establishing 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 people with disabilities to be successful in
securing and maintaining employment. Accommodations such as job
restructuring, worksite adaptations, and improved accessibility are
examples. Supported employment is a specific approach to improve
employment outcomes for some people with disabilities, usually involving
a job coach employed by a rehabilitation service provider to provide
on-the-job assistance.

Technology can play a major role in making workplaces accessible and in
enabling individuals with disabilities to complete work tasks by
adapting tools and processes. Ergonomics, universal design, and
assistive technology devices are all strategies to enhance workplace
performance.

Transition from School to Work

NIDRR, along with RSA, OSEP, and the entire Department of Education, is
particularly interested in the process by which disabled students make
the transistion to productive work, rather than settle 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 and
other secondary education programs, along with 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
people 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 support 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 concerning the delivery of these services. Among
these are issues of disclosure, accessibility of a range of services,
and the 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
people with disabilities. That research agenda must incorporate economic
research, service delivery research, and policy research.

Most important, NIDRR's research 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., the workplace, information technology, telecommunications, and
transportation systems) that will make work more accessible, along with
strategies for assisting individuals to achieve both the skill levels
and the flexibility required for full labor force participation in the
21st century. Finally, as a departure from NIDRR's historical emphasis
on the service system and the quality of services, the agenda calls for
examination of economic issues (e.g., benefits and costs of various
incentive plans) associated with employment of people with disabilities,
labor force projections and analyses, and an increased understanding of
employer roles, perspectives, and motivational systems.

The purposes of NIDRR's research in employment are to:

assess the impact of economic policy and labor market trends on the
employment outcomes of people with disabilities;

improve the effectiveness of community-based employment service
programs;

improve the effectiveness of state employment service systems;

evaluate the contribution of employer practices and workplace supports
to the employment outcomes of people with disabilities; and

improve school-to-work transition outcomes.

Future 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 people 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:

an analysis of the implications for employment outcomes of cross-agency
and multiagency developments and initiatives, including welfare reform,
workforce consolidation, SSA reform, Medicare and Medicaid changes, the
Department of Education-Department of Labor school-to-work program, and
Executive Order No. 13078 (1998);

an 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 of these differences on job
acquisition and retention; and

an analysis of the impact of labor market changes on employment of
people with disabilities, including alternative employment arrangements
such as small business entrepreneurship, self-employment, telecommuting,
part-time work, and contractual work.

Community-Based Employment Service Programs.

Proposed restructuring of the financing of employment-related services
for individuals with disabilities posits a major role for new or
different service delivery arrangements. The capacity of the existing
provider system, represented in part by the 7,000 community-based
rehabilitation programs (CRPs) in the nation, to assume this role
requires thorough investigation.

Specific research priorities include:

an evaluation of provisions for accountability and control, and
protections for difficult-to-serve individuals; an analysis of the costs
and benefits of services; and a measurement of the quality of employment
outcomes for consumers with disabilities;

an analysis of the extent to which the 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

an 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 choices regarding vocational
goals, services, and service providers; the implementation of
performance standards and accountability indicators to ensure
improvement in the system; a greater role for consumer direction through
State Rehabilitation Advisory Councils (RACs); and changes in the
eligibility determination process that include presumptive eligibility
and the order of selection procedures, among others.

The 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 the following:

an analysis of the impact of management and service delivery changes in
the State-Federal VR program on the quality and outcomes of VR services;

an evaluation of the impact of professionalization of the rehabilitation
counselor workforce;

an assessment of the efficacy of various methods of case management;

the development and evaluation of outcomes measures for VR consumers
under one-stop configurations;

the identification and evaluation of marketing strategies to assist VR
counselors in helping people with disabilities obtain jobs in a variety
of employer settings;

an assessment of interagency coordination in delivering services to
multiagency consumers;

an assessment of the outcomes of small business entrepreneurship and
self-employment as strategies to improve outcomes for vocational
rehabilitation clients; and

an assessment of the applicability of traditional VR approaches for
minority and emerging universe populations.

Employer and Workplace Issues.

One area that has received insufficient research is the workplace,
including both the physical environment (e.g., job site accommodations,
technological aids, and the like) and the social environment, comprising
roles of co-workers, supervisors, and employers.

Specific research priorities include:

the investigation of employers' hiring and promotion practices;

an evaluation of models of collaboration between rehabilitation
professionals and employers;

the development and evaluation of cost-effective strategies for
improving the receptivity of the workplace environment to workers with
disabilities;

the development and evaluation of strategies for encouraging employers
to hire disabled workers (e.g., tax credits, arrangements regarding
partial support for medical benefits);

an evaluation of the impact of new structures of work, including
telecommuting, flexible hours, and self-employment on employment
outcomes;

the 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 benefits programs; and

an 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
during secondary school, at secondary school completion, and at
completion of some level of post-secondary education. In recent years,
the U.S. Departments of Education and Labor have collaborated to support
the development of state and local systems whose broad mission is to
prepare youth for success in the global marketplace.

Specific research priorities include:

the determination of the impact of these state and local educational
system initiatives on work opportunities for the nation's youth with
disabilities;

the evaluation of whether 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;

the identification of systemic and environmental barriers to full labor
force participation;

an assessment of whether inovations in school-to-work practices are
accessible to youth with disabilities and determination of the impact of
these practices on employment outcomes; and

an 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 accommodations 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 people with disabilities. Health care for people 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 people 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 what the managed care company considers unnecessary health care,
particularly specialty services and hospitalization. Individuals with
disabilities have expressed concern that managed care approaches may
limit their access to medical rehabilitation specialists, goods, and
services. In addition to a market-driven shift to managed care, other
related changes have occurred, including shortened periods of stay in
inpatient rehabilitation facilities and the emergence of subacute
rehabilitation providers. Considerable consolidation also has occurred
within the medical rehabilitation industry and has further affected the
availability and delivery of services. There is a new emphasis on
developing performance measures that incorporate 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 the 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 people. People with no
activity limitations reported approximately four physician contacts per
year; this figure doubled for those who had some activity limitation,
five times as high for those unable to perform major life activities,
and seven times as great for those needing help with instrumental
activities of daily living (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 people with disabilities.

In the past, the health needs of people with disabilities often have
been conflated with medical rehabilitation needs. The recognition that
people 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,
people 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 systems level, the study
of the organization and financing of health services must include an
analysis of the impacts on people 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 people with disabilities have higher health care utilization
rates than the general population, having a disability does not mean
that a person is ill. People with disabilities increasingly are
demanding information about and access to programs and services aimed at
promoting their overall health, including access to routine health care,
preventive care, and wellness activities. This includes primary care
and, for women, access to gynecological care. For children, this means
access to appropriate pediatric care. In clinical settings, these
demands require development of disability-sensitive protocols for proper
nutrition, exercise, health screening, and treatment of
nondisability-related illnesses and conditions. NIDRR is committed to
supporting research to improve the overall health of people with
disabilities.

Health Care at the Systems Level

People with disabilities must have access to, and be satisfied 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 people with disabilities, whether access to
specialty care, particularly medical rehabilitation services, is
limited. In the current cost-cutting and restrictive climate, it is
important that new service configurations preserve equity for people
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 barriers
in the environment. Medical rehabilitation includes medical and
bioengineering interventions, therapeutic modalities, and community and
family interventions.

Medical rehabilitation frequently is associated with physical
disabilities such as musculoskeletal or neuromuscular impairments or
limitations in mobility or manipulation. However, medical rehabilitation
also provides interventions to improve or manage sensory, cognitive, and
mental health functioning, pain, or fatigue, and includes rehabilitation
dentistry and maxillofacial prosthodontics. Specialists and allied
health personnel from a broad range of disciplines may be involved in
the provision of medical rehabilitation services.

Medical Rehabilitation at the Individual Level

NIDRR-funded research has improved medical rehabilitation treatment in
areas such as spinal cord injury, traumatic brain injury, stroke, and
other leading causes of disability. NIDRR will expand this research 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
differences 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.

The prevention and treatment of secondary conditions are a significant
challenge to the medical rehabilitation field. Secondary conditions
result directly from the primary disabling condition and may have
significant effects on the health and function of people with
disabilities. Examples of secondary conditions may include depression,
bladder and skin problems, respiratory problems, chronic pain,
contractures or spasticity, fatigue, joint deterioration, or memory
loss. Other health conditions such as cardiac problems, autoimmune
diseases, obesity, or cancer may not always derive directly from the
original disability, but may require special preventive efforts or care
interventions because of a preexisting disability.

Medical Rehabilitation at the Systems Level

Cost containment strategies inherent in managed care may limit 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.

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. Researchers must continue to assess the
impact of changes at the systems level on the rehabilitation outcomes of
individuals. In addition, providing care in nonacute settings requires
developing additional capacity, such as training practitioners for more
independent work in the community. NIDRR research must contribute to
building this new capacity.

The purposes of NIDRR's research in the area of health care and medical
rehabilitation are to:

identify and evaluate effective models of health care for people with
disabilities;

develop models to promote health and wellness for people with
disabilities;

examine the impact of changes in the health care delivery system on
access to care;

evaluate medical rehabilitation interventions that maximize physical,
cognitive, sensory, and emotional functioning for individuals with
disabilities, taking into account aging, environment, emerging
disabilities, and changes in the health services delivery system;

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;

improve delivery of medical rehabilitation services to people with
disabilities; and

evaluate the health and medical rehabilitation needs of people whose
impairments are attributed to newly recognized causes or whose
conditions are becoming recognized as disabilities. Examples include a
disability resulting from interpersonal violence and emergent chronic
diseases such as childhood asthma or chronic fatigue immune deficiency
syndrome.

Future Research Priorities for Health Care and Medical Rehabilitation

Research on Effective Methods of Providing a Continuum of Care,
Including Primary Care and Long-Term Care, to Persons with Disabilities.
In recent years, a number of different models of providing routine
health care for people with disabilities have emerged. For example,
medical rehabilitation programs have developed primary care clinics; and
there are other programs where primary care providers have added medical
rehabilitation consultants to advise them on the care of people with
disabilities. The efficacy of these models is not yet known, especially
their impact on the overall well-being of 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:

identification of effective models of primary and long-term care across
disability populations including emerging disability groups;

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

collection and analysis of longitudinal data on health care utilization
by people 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:

identification and evaluation of models to promote health and wellness
for people with disabilities in mainstream settings where possible.
These include nutrition, exercise, disease prevention, and other health
promotion strategies. NIDRR will place a particular focus on prevention
and treatment of secondary conditions, such as pressure sores, and on
the needs of emerging disability populations, including people aging
with a disability;

evaluation of the impact of health status on independence, community
integration, quality of life, and health care expenditures; and

development of guidelines that establish protocols for reaching or
maintaining appropriate levels of fitness for people 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 policy-makers respond to
public concerns about access to care. Specific research priorities
include:

evaluation of the impact of changes at the health system level (e.g.,
financing and regulatory changes) and on access to the continuum of
health care services (e.g., medical rehabilitation); and

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:

identification of methods to minimize neurological damage, improve
behavioral outcomes, and enhance cognitive abilities; and

identification of effective collaborative research opportunities,
including those using data generated by the model systems.

Research on Progressive and Degenerative Disease Rehabilitation.
Research to maintain and restore function and independent lifestyles for
individuals with multiple sclerosis, arthritis, and a neuromuscular
disease is a key element of medical rehabilitation research. Specific
research priorities include:

identification and evaluation of methods to maintain function for people
with these conditions;

identification of effective health promotion strategies;

evaluation of strategies to minimize the impact of secondary conditions;
and

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 people with cerebral palsy, spina bifida, post-polio syndrome, and
other long-standing conditions are an important part of rehabilitation.
Specific research priorities include:

development and evaluation of physical therapy techniques, respiratory
management techniques, exercise regimens, and other rehabilitative
interventions aimed at maximizing functional independence;

development and evaluation of supports to facilitate community
integration and independent living outcomes; and

investigation of factors that lead to disability and loss of full
participation in society following disease or injury.

Research on Secondary Conditions. Preventing and treating secondary
conditions are critical to preserving health and containing the health
care costs of people with disabilities. Specific research priorities
include:

development of clinical guidelines to identify at-risk individuals and
to involve consumers in regimens to prevent secondary conditions;

identification and evaluation of methods of preventing and treating
secondary conditions across impairment categories; and

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 expanded disability
definitions will be increasingly significant 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:

identification and evaluation of the need for health and medical
rehabilitation services to address emerging disability conditions;

identification and evaluation of effective models that health and
medical rehabilitation providers can use to meet the needs of people
with emerging disabilities; and

development of models to predict future emerging disability populations.

Research on Aging with a Disability. Advances in acute medical care for
people with disabilities means that, as the population ages, many
disabled people will live longer and may develop the serious, chronic
conditions common to many aging populations. Examples of such conditions
include heart disease, diabetes, cancer, pulmonary diseases, arthritis,
and sensory losses. Specific research priorities include:

determination of the implications of aging with a disability on access
to routine health care, medical rehabilitation services, and services
that support community integration;

investigation of the impact of aging on disabilities and of disabilities
on aging;

investigation of the relationship between age-related disability and
employment; and

analysis of the effect of a longer lifespan on the durability and
effectiveness of previously demonstrated interventions and technologies.

Research on Rehabilitation Outcomes. NIDRR's prior research efforts have
developed new rehabilitation techniques for a number of disability
groupings and also have developed and tested comprehensive model
systems, home and community-based services, and peer services to improve
rehabilitation outcomes. With the renewed emphasis on performance and
outcomes and with increasing economic constraints generated by changes
in the health services delivery system, rehabilitation medicine needs to
document the impact of its services. Specific research priorities
include:

expansion of outcomes evaluation approaches, beyond short-term
rehabilitation studies, to include outpatient and long-term follow-up
information;

development of outcomes measures that include measures of environmental
barriers;

evaluation of methods that translate outcomes findings into quality
improvement strategies;

analysis of barriers and incentives to consistent use of health and
medical rehabilitation outcomes measures in payer-driven and consumer
choice service models; and

refinement of measures of rehabilitation effectiveness.

Research on Changes in the Medical Rehabilitation Industry. The medical
rehabilitation industry is undergoing an unprecedented level of
consolidation, with unknown consequences for access and flexibility. The
industry has undergone significant changes in service sites with the
move from inpatient to post-acute, outpatient, and community-based
services. Outcomes measurement and quality assurance initiatives are
increasingly used in evaluating medical rehabilitation services.
Specific research priorities include:

investigation of the impact of financing and other market forces on the
medical rehabilitation industry, including service delivery patterns and
treatment modalities; and

identification and evaluation of the impact of changes at the medical
rehabilitation industry level on access and outcomes for people 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 people
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

"Study on the Financing

of Assistive Technology

Devices of Services for

Individuals with Disabilities"

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 a coincidence that these remarkable advances have occurred during
the period in which federal funds have supported research, development,
and training in rehabilitation engineering.

In planning the future of rehabilitation engineering research, NIDRR and
its constituents in the consumer, service, research, and business
communities will continue to identify flexible strategies to address
emerging issues and technologies, to promote widespread use of research
findings, and to maximize the impact of NIDRR programs on the lives of
people 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 interface problems related to the compatibility of
various technologies, such as hearing aids and cellular telephones.

Technological innovations benefit disabled people at the individual
level and at the systems level. At the individual level, assistive
technology enhances function; at the systems (or public technology)
level, technology provides access that enhances community integration
and equal opportunity. Most 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 people, nearly 3 percent of the
population, were living in homes specially adapted to accommodate
impairments. While the majority of people 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 people with disabilities to compensate for
age-related functional losses. The importance of creating both types of
assistive technologies is found in the words of one engineer, who
stated, "It is not high-tech or low-tech that is the issue; it is the
right tech." NIDRR research must be able to identify the most
appropriate technological approach for a given application, and continue
to develop low-tech as well as high-tech solutions.

Given the current trend toward more restrictive utilization of health
care funds in both public and private sectors, rehabilitation
engineering research must justify consumer or third-party costs in
relation to the benefits generated for consumers. These benefits may be
in the form of long-term cost savings and consumer satisfaction. Equally
important, rehabilitation engineers must develop products that are, in
addition to being safe and durable, marketable and affordable.
End-product affordability is important, not only in meeting consumer
needs, but also in creating the market demand that will encourage
manufacturers to enter production.

Systems Technology: Universal Design and Accessibility

As disabled people 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:
inter-changeability, compatibility of components, modularity,
simplification, and accommodation 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
the possible reduction in the need to develop 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 crosscutting issues, including the problem of small markets and
the need for reliable outcomes measures. In addition, research must
continue to lead to improvements in the functional capacities of
individuals with sensory, mobility, manipulation, and cognitive
impairments. Telecommunications and computer access offer significant
potential to improve participation of people with disabilities in all
facets of life. Continuous innovations in these areas require that the
needs of people with various disabilities be recognized and
accommodated. Finally, access to the built-environment remains a
critical need for people with disabilities, and thus requires ongoing
research.

The purposes of NIDRR's research in the area of technology are to:

develop assistive technology that supports people with disabilities to
function and live independ-ently and obtain better employment outcomes;

develop biomedical engineering innovations to improve function for
people with disabilities;

promote the concept and application of universal design;

remove barriers and improve access in the built environment;

ensure access of disabled people to telecommunications and information
technology, including through the application of universal design
principles;

ensure the transfer of technological developments to other research
sectors, to production, and to the marketplace;

identify business incentives for manufacturers and distributors;

identify the best methods of making technology available to people with
disabilities;

ensure that research and development at both the personal and systems
levels take into account cultural relevance for diverse ethnic and
geographic populations;

develop rehabilitation engineering science, including a theoretical
framework to advance empirical research; and

raise the visibility of engineering and technological research for
people with disabilities as a means of increasing attention to these
research areas 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 sensory
function, mobility, manipulation, cognitive function, information
communication, and the built environment. The priorities also will
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:

development and evaluation of hearing aids that exploit the potential of
digital technology and use advanced signal processing techniques to
enhance speech intelligibility, attain a better fit, and ensure
com-patibility with telecom-munications systems and information
technology;

evaluation of the application of digital processing techniques to
assistive listening systems;

evaluation of modern methods of sound recognition in alerting devices;
and

development of interfaces for assessment of automatic speech recognition
systems.

In the area of visual impairments, specific research priorities include:

identification and evaluation of methods to enhance accessibility of
visual displays;

development and evaluation of graphical user interface technologies for
various document and graphic processing systems; and

improvement of signage in public facilities.

In the area of communication impairments, specific research priorities
include:

identification and evaluation of technologies to enhance the
communication abilities of people who are deaf-blind; and

assessment of the capacity of research in cognitive science, artificial
intelligence, biomechanics, and human and computer interaction to
improve the rate, fluency, and use of communication aids.

Research to Enhance Mobility. Mobility research is directed toward the
problems associated with moving from place to place. Mobility can be
enhanced by accessible public transportation, modified privately owned
vehicles, wheeled mobility devices such as wheelchairs, orthoses and
prostheses, and barrier removal.

In the area of enhancing mobility, specific research priorities include:

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;

revision and dissemination of wheelchair standards;

development and evaluation of techniques to assist consumers and
providers in selecting and fitting wheelchairs and wheelchair seating
systems;

identification of a theoretical framework of gait and other aspects of
ambulation;

development and evaluation of advanced prosthetic and orthotic devices,
as well as footwear and other ambulation devices;

development and evaluation of methods to improve person-device
interfaces, post-surgical management and fitting, and materials used in
bio-engineering applications; and

development of devices to assist with ADLs for people with disabilities
and their caregivers.

Research to Improve Manipulation Ability. The manipulation area includes
research directed toward restoring functional independence for people
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. Although 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:

identification of methods to improve the design of, and achieve
multifunctional control for, hand and arm prosthetic technology;

development and evaluation of surgical approaches that increase
functionality;

development of assistive devices to address manipulation issues for
individuals who experience serious weakness, fatigue, or pain, including
that attributable to progressive deterioration of function; and

development and evaluation of devices and techniques to help prevent
repetitive motion injuries and to rehabilitate those with the condition.

Research on Technology to Enhance Cognitive Function. Limitations in
perception, processing information, organizing thoughts, concentration,
memory, and decision-making may result from a range of
etiologies---including mental retardation, traumatic brain injury,
stroke, mental illness, dementia, and others---and may constitute
substantial barriers to function and social integration. These barriers
can be exacerbated by sophisticated technology interfaces that require
memorizing sequences, reading or interpreting information, or responding
to complex auditory or visual cues. Conversely, technology has the
theoretical potential to simplify many daily activities and contribute
to self-management and independence.

There are three objectives in developing technology to meet the needs of
people with limitations in cognitive functioning. The first objective is
to assure that new technologies for communication, environmental
control, and health maintenance, for example, are accessible to those
with cognitive limitations and do not exacerbate their exclusion from
mainstream activities.

The second objective is to develop technologies that will assist people
with cognitive limitations in the performance of daily activities.
Reminders and cueing devices, trackers and wandering devices, and
portable instructional technologies are some of the approaches that
enable people with cognitive limitations to remember appointments and
medications, locate themselves positionally, follow common instructions,
and obtain assistance.

The third objective is to develop technologies that can enhance or
restore some cognitive functions. Automated systems to improve memory
have been developed and tested, for example. As the fields of cognitive
science and neuroscience create a better understanding of the biology of
cognitive functioning, and as there are concomitant advances in
artificial intelligence and expert systems and in the flexibility of
microprocessors, a new research frontier may emerge.

Specific priorities in the area of technology to address cognitive
limitations include:

assessment of state-of-the-art technology and its applications to
address cognitive functioning;

assessment of consumer need and competencies to use various device
features;

development of technologies to improve job skills and to improve
employment opportunities;

development of technologies to maximize independence and the ability to
perform ADLs and IADLs; and

development of strategies to ensure that new technologies for the
general population are accessible to people with cognitive limitations.

Research to Improve Accessibility of Telecommunications and Information
Technology. Computerized information kiosks, public Web sites,
electronic building directories, transportation fare machines, ATMs, and
electronic stores are just some current examples of rapidly
proliferating systems that face people living in the modern world. To
make such computerized information systems usable by people with a range
of disabilities, NIDRR's research priorities will include development
and evaluation of techniques to assist people with disabilities in
successfully accessing these systems.

The trend in the information technology and telecommunications
industries is to stay away from standardized operating systems and
monolithic applications and move toward net-based systems, applets, and
object-oriented structures. This trend has significant implications for
accessibility for some people with disabilities. Maintaining access to
the Internet and World Wide Web is also a formidable challenge facing
individuals with disabilities.

Another concern in telecom-munications 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, the interference caused by the overuse of spectrum is
presenting problems in the use of FM assistive listening systems.

During the past decade, virtual reality techniques, originally developed
by the National Aeronautics and Space Administration 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 people 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
people 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 lengths 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 improving accessibility to telecommunications and
information technology, specific research priorities include:

development and evaluation of fine motor skill manipulation interfaces,
telecommunication interfaces, and analog to digital communication
technologies;

identification of methods to address issues of accessibility through
Internet communications;

development and evaluation of methods for reducing emerging forms of
interference that affect hearing aids, telephones, and other
communication devices;

determination of the efficacy of virtual reality techniques in both
rehabilitation medicine and in applications that affect the daily lives
of people with disabilities; and

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:

analysis of human factors;

development and evaluation of modular design;

determination of the best methods of disseminating information on
universal design;

development and evaluation of compatible interfaces; and

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 the
sophisticated research and development efforts necessary to bring
quality products to market.

NIDRR's research can identify public policy issues, such as orphan
technology and tax credits, to foster small business investment in
assistive technology innovation. Similarly, NIDRR research can identify
public policy and business issues related to mainstream systems and
public technology. NIDRR will maintain a research capacity that provides
a continuing stream of new ideas, and evidence to validate those ideas,
to stimulate the industry.

## Chapter 6: INDEPENDENT LIVING AND COMMUNITY INTEGRATION 

Whether or not we have a disability, we will never fully achieve our
goals until we establish a culture that focuses the full force of
science and democracy on the systematic empowerment of every person to
live to his or her full potential.

----Justin Dart

ON A ROLL RADIO

Internet Web site

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 control over his or her life, based on an ability and
opportunity to make choices in everyday activities. These activities may
include 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 independence, whatever the setting,
by its very nature it is a concept that also promotes participation,
especially in community settings. For this reason, NIDRR will integrate
its research agenda in independent living and community integration to
encourage interdisciplinary thinking about the interrelationship, to
achieve more successful outcomes for people 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 another 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 people 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 people 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 an 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 the
deinstitutionalization of people with mental retardation or mental
illness and has succeeded in moving many individuals from large
institutional settings 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 has decreased the number of individuals
with mental retardation and mental illness who live 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 activities of daily
living (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 will continue expanding the 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 people 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 has 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 common experiences.

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, people with disabilities are perceived as self-directed,
able, and mainstreamed as opposed to being seen as helpless and objects
of care.

Implications for research focus on the investigation of major physical
and societal or environmental factors, including physical accessibility,
societal attitudes and policies, and the 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 nondiscriminatory 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 people
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 people 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 result in isolation for people with
disabilities.

Directions of Future Research on Independent Living and Community
Integration

The purposes of NIDRR's research in the area of independent living and
community integration are to facilitate the participation of people with
disabilities in society by:

identifying and evaluating factors or domains of community integration
and independent living, especially those aspects that lead to full
participation in society;

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;

providing empirical evidence of the impact of consumer control on
outcomes associated with community integration and independent living;

assessing the impact of environmental factors on the individual
achievement of community integration and independent living;

developing and disseminating training on independent living and
community integration concepts and methods for consumers, families,
service providers, and advocates; and

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 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 people with disabilities.

Additionally, research must find ways to measure these outcomes in order
to evaluate services provided to people with disabilities.

Specific research priorities include:

reviewing relevant scholarship and creating a theoretical framework for
the study of community integration and independent living that
incorporate the real world experiences of people with disabilities, and
include knowledge gained from disability studies;

developing measures that build upon the conceptual framework and can be
applied to the evaluation of rehabilitation interventions intended to
increase independence and integration; and

analyzing cultural perspectives as facilitators or 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 standards 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:

identification and assessment of models of service delivery that
incorporate concepts of independent living and community integration and
reflect an understanding of the importance of environmental barriers;
and

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, policy-makers, and
consumers must have adequate measures of these outcomes. As discussed
elsewhere in this plan, NIDRR is placing special emphasis on development
of measures of the interrelationship between the individual and the
environment. Concepts of independent living and community integration
are integral to that process.

Specific research priorities include:

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

evaluation of strategies to promote independence, inclusion, and
participation.

Research on Physical Inclusion. Housing, transportation, communication,
and architectural barriers limit the physical inclusion of people with
disabilities. Lack of funding also affects access to these necessary
community supports, and funding constantly changes due to policy
decisions at the federal and state levels.

Specific research priorities on physical inclusion include:

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

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:

an evaluation of the impact of the ADA on community participation of
people with disabilities and on the achievement of independent living
and community integration outcomes;

an 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 people with
disabilities; and

an 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:

an assessment of the impact of applications of telecom-munications
innovations on independent living and community integration outcomes;

an identification of barriers to participation in the community,
including those resulting from inequitable distribution of technology or
reduction of interpersonal contact; and

an 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 in living in the community. This training
covers 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:

identification of strategies that promote the development of
self-advocacy skills, including social and communication tools, to
assist people with disabilities in living in community settings;

analysis of the influences of environmental factors in developing
positive behavioral support models;

development of cost-effective techniques to foster the capacity of
providers, educators, and families to prevent or respond to challenging
behavior;

assessment of the potential role of technology in promoting personal
development and adaptation in community settings; and

development of strategies and tools to improve consumer choice and
decision-making about assistive technology and to assess its
performance.

Research on Personal Assistance Services. It is important to test
hypotheses about the role of personal assistance services (PAS) in
promoting community integration, return to work, health maintenance, and
the impact of PAS on the use of health care and institutionalization
dollars. The relative value of different PAS systems for disabled
individuals of varying ages, disability types, ethnic groups, and
personal independence goals is unknown. Although research has
demonstrated the impact of consumer-directed PAS models on consumer
satisfaction, the relationship of satisfaction to quality of life and
other outcomes measures needs further explication.

Specific research priorities include:

evaluation of the quality of life and cost-effectiveness outcomes of
consumer-directed services;

analysis of the impact of PAS on participation in employment; and

evaluation of the impact of assistive technology on the need for and use
of PAS.

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:

investigation and documentation of the ways in which federal, state, and
local legislation, regulations, policies, and practices impact on social
role performance of people with disabilities; and

identification and evaluation of tools to assist people 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:

identification and evaluation of service delivery models that
incorporate individual choice and consumer control into strategies for
achieving social integration and self-determination;

development of measures to evaluate independent living and community
integration in terms of inclusion, social integration, and
self-determination; and

assessment of the prevalence of abuse and violence in community
settings, and development of strategies to minimize their occurrences.

Research on Management Tools for Centers for Independent Living and
Community-Based Residential Programs. NIDRR previously has funded
research on effective management strategies for centers for independent
living, as well as research on community residential living for
individuals with mental retardation and long-term mental illness.
Continued research in these areas will evaluate the effectiveness of
current systems and address the challenges to these programs in their
expanding roles.

Specific research priorities include:

development of strategies for centers for independent living to succeed
in their roles with state rehabilitation agencies and other agencies and
groups concerned with independent living;

development and evaluation of strategies for centers for independent
living and community-based residential programs to design and adapt
programs that address the changing nature of the disability population;

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

investigation of applications of new information technologies in the
management of centers for independent living and community-based
residential programs.

Research to facilitate community integration and independent living will
focus on strategies to make communities, social systems, public
policies, and the built environment more accessible to people 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 increasingly will be
people 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

Late Professor of Sociology,

Brandeis University

Several important issue areas cut across the four research
areas---employment, health and function, technology for access and
function, and independent living and community integration---described
earlier in this Plan. Disability statistics, disability outcomes
measures, disability studies, rehabilitation science, and disability
policy research all are integral to successful completion of a
comprehensive agenda in disability and rehabilitation research. NIDRR
will fund research efforts in each of these areas during the next five
years to enhance NIDRR's overall research program and contribute to
NIDRR achieving its goal of helping people with disabilities attain
maximal independence. Priorities for each research area are discussed in
this chapter.

Disability Statistics

NIDRR has several purposes in advancing work in disability statistics.
First, NIDRR wants to make the most of the data currently collected in
reliable national data sets. Second, NIDRR encourages the creation and
analysis of research databases, including meta-analyses focused on
problems such as employment rates or the utilization of health care or
social services. Third, NIDRR seeks to understand the composition of a
possible emerging universe of disability created by new disabilities or
socioeconomic variations in the distribution of existing disabilities.
These changing areas have implications for both public health and
rehabilitation. Fourth, NIDRR wants to assist in providing input to the
formulation of national disability statistics policy, including the
incorporation of measures relevant to the new paradigm of disability.
Finally, NIDRR recognizes the need for surveys to be conducted in
accessible formats, and for disability demographic and statistical data
to be readily available to a wide range of audiences.

Data about the incidence, prevalence, and distribution of disability,
and the characteristics and experiences of disabled people, are critical
to planning research and services, evaluating programs, and formulating
public policy. These data may be generated by diverse sources such as
national population surveys, program data collection on participants,
and researcher-compiled data sets relevant to specific research areas.
Other less prominent sources include state and local surveys, advocacy
organization data, and market research data.

Existing data resources are of varying degrees of completeness and
quality, and are not sufficiently comprehensive in scope or perspective.
None takes into account the new paradigm of disability that examines the
interaction between the individual and the environment, and requires
measures of environmental as well as individual factors that contribute
to disability. NIDRR has taken a lead role in elucidating the connection
between impairment and the supports or limitations imposed by the built
and social environments. NIDRR will initiate the process of developing
new survey measures to define disability accurately and reliably in the
context of both individual and environmental factors.

Research Priorities for Disability Statistics

NIDRR will continue to support the secondary analysis of major national
data sets, especially the disability supplement to the National Health
Interview Survey, identifying information and connections not considered
by the survey sponsors. NIDRR's other focus will be the refinement of
the disability data effort to reflect new paradigm concepts. Specific
research priorities include:

the elucidation of salient issues or the stimulation of further research
questions through meta-analyses;

development and evaluation of state-of-the-art measurement tools that
will assess the complex interactions between impairment and environment;

development and evaluation of strategies to ensure that disability
statistics accurately capture information on underrepresented minorities
and emergent disabilities;

development and evaluation of methods for ensuring the dissemination of
disability statistical data to diverse audiences; and

development and testing of accessible survey instruments and protocols.

Rehabilitation Outcomes Measures

The importance of demonstrating outcomes across service settings,
programs, and research efforts cannot be overemphasized, given resource
allocation issues and concerns about value that operate at every level
of our society. Demonstrating outcomes is an integral part of NIDRR's
research agenda now and in the future. For purposes of discussion,
several categories of outcomes measures are presented. In practice,
however, these measures may not be mutually exclusive.

One area in which significant prior work on outcomes measures has
occurred is medical rehabilitation. A number of measures have been
developed and integrated into service delivery and research settings.
Examples of these measures include impairment-specific measures such as
the NIH Stroke Scale, disability measures like the Functional
Independence Measure (FIM), and measures of handicap such as the Craig
Hospital Assessment and Reporting Technique (CHART). Many of these
measures, however, have been validated narrowly and are not applicable
across disability groups. Some were developed for hospital settings and
require revision for use in post-acute programs or in community
settings.

The new focus on long-term outcomes requires measures that can document
changes over time. Use of an outcomes-based approach also has
ramifications for sample design, in terms of identifying homogeneous
groups of consumers for comparison and using effective risk-adjustment
methodologies. New managed care approaches have resulted in demands by
people with disabilities for outcomes monitoring to ensure that quality
care standards are met. This concern for measurable outcomes based on
quality standards also is evident in the payer community, which has
questioned evidence of the efficacy of treatments.

Consumers have expressed particular concern about quality assurance in
the area of assistive technology. NIDRR will support investigations to
identify and develop evaluation methodologies and outcomes measurement
models for consumer assessments of assistive devices.

Expanding the focus of outcomes research to incorporate measures of
environment and accommodation is critical to continued implemen-tation
of a new paradigm of disability. Currently, our ability to describe the
interaction of an individual and the environment is limited by a lack of
validated measures. A number of conceptual and methodological concerns
must be addressed in developing such measures. Of particular relevance
is how best to account for the impact of numerous variables, including
environmental factors, that impinge on long-term outcomes.

Independence and community integration have been identified as
overarching NIDRR goals, and NIDRR's research initiatives relate
directly to supporting the achievement of these goals. As indicated
earlier, some measures of community integration are already in use.
These measures, developed for specific populations, are examples of
tools that might be refined to monitor and compare progress toward the
goals of independence and community integration.

Distinctly related to functionally oriented medical outcomes measures
are measures of quality of life. These measures are conceptually linked
to individual values about living with disability and include the impact
of rehabilitation and environmental barriers. A particular challenge in
developing these measures is the qualitative nature of individual
valuation of life quality and the difficulty of constructing ways of
comparing individual perceptions.

Research Priorities for Rehabilitation Outcomes Measures

NIDRR will support research and development activities that increase the
availability of measures across the areas discussed in this section.
Specific research priorities include:

refinement of measures of medical rehabilitation effectiveness to
incorporate environmental factors in the assessment of function;

development and evaluation of measures of independence, community
integration, and quality of life, especially measures that incorporate
the perspectives of people with disabilities; and

development of measures for use in outpatient and community-based
settings, ensuring the applicability of these measures to all disability
populations.

Disability Studies

The field of disability and rehabilitation research has not reached a
general consensus on the meaning of the term disability studies. NIDRR
uses the term generally to refer to the holistic study of the phenomenon
of disability through a multidisciplinary approach. This approach
emphasizes the perspectives of people with disabilities and regards
personal experience as valuable data.

The IOM, in Enabling America, describes disability studies as "the
examination of people with disabling conditions and cultural response to
them through a variety of lenses, including economics, political
science, religion, law, history, architecture, urban planning,
literature\..." (Brandt & Pope 1997). NIDRR believes that disability
studies is a natural complement to the new paradigm, emphasizing the
study of the complex relationship between various aspects of disability
and society, and that it will enhance the methodologies and knowledge
base of each involved scientific discipline.

In this respect, the content of disability studies is not unlike that of
other area studies, such as women's studies, African-American studies,
or geographic, regional, or ethnic studies (e.g., Middle Eastern studies
or Islamic studies). All of these areas of study require the convergence
of theory, technique, and methodology from a range of disciplines to
develop an enhanced understanding of a complex phenomenon.

An important purpose in the development of any area of study is to
assure that the perspective of the group under study is reflected in the
methodology and body of core knowledge, and that individuals from the
group have the opportunity to participate in the development and
promulgation of the methodologies and the curricula. This also can be
expected to lead to an impact on core disciplines, specifically an
impact that requires development of theories and hypotheses that do not
ignore the subject population. For example, women's studies has
influenced the development and legitimation of studies of the sociology
of gender. Economists analyzing poverty now must consider the particular
causes and effects of poverty among women and in ethnic groups, largely
due to the attention and legitimation of these subjects by the area
studies efforts.

NIDRR has three basic purposes for supporting a program of disability
studies. First, disability and rehabilitation research needs a body of
knowledge that is comprehensive and holistic, reflecting a range of
disability perspectives, and it needs a larger cadre of researchers and
policy-makers familiar with that knowledge base. Second, the field of
disability and rehabilitation research needs to develop methodologies
and influence the theories and practices of a range of disciplines to
ensure their constructive attention to the issues related to disability,
thereby enhancing the scientific endeavor. Third, consistent with the
goals of the Rehabilitation Act, as amended, especially its principles
of inclusion, integration, and independence, NIDRR believes it is
essential to reflect the perspectives of individuals with disabilities
in studies of disability. NIDRR also believes it is important to afford
increased opportunity for individuals with disabilities to participate
in the development of curricula and methodologies to study the
phenomenon of disability.

Research Priorities for Disability Studies

Specific research priorities for disability studies include:

the development of a theoretical framework for conducting disability
studies and strategies for teaching disability studies at various
academic and non-academic levels;

the compilation of information about the many forms of extant disability
studies, including academic levels, disciplines involved, course
content, resources, and students; and

the exploration of the feasibility of developing non-academic courses in
disability studies that will facilitate the study of the experience,
history, and culture of disability in community-based settings.

Rehabilitation Science

Permeating NIDRR\'s research agenda will be an awareness of
opportunities to construct and test a theoretical framework for
rehabilitation science. As defined in the 1997 IOM report, Enabling
America, rehabilitation science is a study of function, focusing on the
processes by which disability develops, and the factors influencing
these processes. The goals of Rehabilitation Science are to contribute
to better treatment and technology for persons with disabilities.
Rehabilitation Science focuses on factors that lead to transitions along
a continuum from underlying pathology to functional and environmental
limitations to functional independence and participation. These factors
include impairment, functional limitation, and disability. In addition,
rehabilitation science analyzes physical, behavioral, environmental, and
societal factors that affect movement along the continuum (Brandt &
Pope, 1997). The field of rehabilitation has produced a body of
empirical evidence regarding function and interventions to improve
function. The next challenge is to use this evidence to produce a body
of scientific and engineering theory that can be used to develop
innovative and improved techniques of functional restoration.

Research Priorities for Rehabilitation Science

Specific research priorities for rehabilitation science include:

further elucidation of the enabling-disabling process; and

exploration of the development and application of a theoretical
framework for rehabilitation science.

Disability Policy

Public disability policy broadly defines the participation of disabled
people in the general benefits that society provides to all citizens, as
well as the parameters of disability-specific benefits. Public policy
has more significance for people with disabilities and their families
than for many segments of the population. This differential impact
stems, in part, from the fact that people with disabilities must
interface with so many different components of public policy systems,
many of which are conflicting or inconsistent, such as employment goals
and requirements for income assistance programs. The larger public
policy context for disability and rehabilitation research reflects
interlinking service delivery systems in which changes in one system
often have a substantial impact on others. The dilemma for disability
and rehabilitation policy is that the various systems are not mutually
reinforcing.

The lack of mutual reinforcement stems from four factors. First, policy
goals may be, to some degree, mutually exclusive; that is, policies
designed to emphasize one goal may be implemented only at the expense of
other goals. Second, different policies are governed by different and
conflicting assumptions about disability and the role of people with
disabilities in American society. Third, some service systems lack
integration with other systems and programs needed to promote continuity
between different parts of people's lives. Fourth, disability largely
has been ignored in national science and technology policy. Thus,
underlying conflicts may exist and result in unintended disincentives to
work and to attain independence.

At the systems and societal levels, the potential impact of policy
initiatives on people with disabilities may be even more significant,
yet it is less likely to be recognized. The impact of
telecommunications, the built environment, health care, and labor market
policies has been discussed in this plan.

Research Priorities for Disability Policy

Disability policy research should examine issues that are national in
scope and that represent intersections of public interest. Such research
should use national data sets, where possible, to determine the impacts
of policy decisions on people with disabilities.

Specific research priorities include but are not limited to:

analysis of how the bundling of income supports with other
benefits----including health insurance and other in-kind assistance such
as housing subsidies or food stamps----affects individual decisions to
seek or continue employment;

evaluation of the impact of changing social policies toward parenting,
personal assistance services, tax deductions, and education, among other
factors, on the lives of people with disabilities;

analysis of the impact of welfare-to-work initiatives on the well-being
of people with disabilities or their families;

evaluation of the impact of macroeconomic issues, such as the changing
labor force requirements, on employment opportunities for people with
disabilities;

evaluation of the impact of legislation and policy on employers,
professional service providers, social service agencies, and direct
support workers in terms of their participation in employing, serving,
or working for disabled people;

investigation and evaluation of the relevance of frameworks for
disability research, including but not limited to research on the role
of market forces (balancing supply and demand) on disability policy;

investigation of the impact of national telecommunications and
information technology policy on the access of people with disabilities
to related education, work, and other opportunities; and

examination of the impact of national housing policy and building codes
on the living environments and housing choices of people with
disabilities and their families.

Related disability research emphasizes knowledge areas that are
crosscutting and essential to the support and refinement of disability
research in general. The common theme linking disability statistics,
outcomes measures, disability studies, rehabilitation science, and
disability policy is that they all provide essential frameworks and
building blocks that enable the disability research enterprise to thrive
and to address important issues in meaningful ways.

# Section Three: Priorities for Related Activities

The Rehabilitation Act authorizes NIDRR to conduct research and related
activities. This section focuses on the related activities that
complement NIDRR's research component and support its overall mission.
NIDRR has organized the related activities section into three areas:
knowledge dissemination and utilization, capacity-building, and
enhancing NIDRR's Management of Research.

The 1992 amendments to the Rehabilitation Act charged NIDRR with
ensuring the widespread dissemination, in usable and accessible formats,
of practical scientific and technological information to a wide range of
audiences. NIDRR's comprehensive program of knowledge dissemination and
utilization projects addresses this mandate. Capacity-building
activities center primarily on NIDRR's training function. The
Rehabilitation Act mandated the training of researchers, service
providers, and consumers and their families to strengthen research
capability and improve the effective use of research results in
practice. NIDRR sponsors a variety of programs and strategies to build
capacity in the rehabilitation field and in the disability community.
The area of enhancing NIDRR's management of research includes internal
and external activities implemented by NIDRR to achieve its goals and
objectives. Interagency coordination, planning, evaluation, and advanced
technological communications with and among grantees are key strategies
employed to leverage effectively the benefits of NIDRR programs.

## Chapter 8: KNOWLEDGE DISSEMINATION AND UTILIZATION 

Overview

The effective dissemination and use of disability and rehabilitation
research are critical to achieving NIDRR's mission. Research findings
can improve the quality of life of people with disabilities and further
their full inclusion into society only if the findings 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, policy-makers,
educators, human resource developers, advocates, entities covered by the
ADA, and others. In carrying out this mission, NIDRR's challenge is to
reach diverse and changing populations, to present research results in
many different and accessible formats, and to use technology
appropriately.

The Rehabilitation Act's 1992 amendments included language requiring
NIDRR to ensure the widespread distribution, in usable formats, of
practical scientific and technological information generated by
research, demonstration projects, training, and related activities. In
addition, NIDRR's responsibilities were amended to emphasize wide
dissemination of educational materials and research results to
individuals with disabilities, especially those who are members of
minority groups or of unserved or underserved groups. In addition, the
statute requires Rehabilitation Research and Training Centers (RRTCs) to
serve as information and technical assistance resources to providers,
individuals with disabilities, and others through workshops,
conferences, and public education programs. Rehabilitation Engineering
Research Centers (RERCs) disseminate innovative ways of applying
advanced technology. RERCs also must cooperate with projects funded
under the Assitive Technology Act of 1998 to provide information on, and
increase awareness of, 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 people with disabilities.

Effective dissemination requires understanding that communication
channels are expanding continuously 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, people 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
dissemi-nation strategies that relay information quickly is equally
important.

The Changing Environment for Dissemination

The environment in which dissemination and utilization strategies
operate is undergoing a number of changes, including technological
innovation, the 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 (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).

Changes in the prevalence and distribution of disabilities are
influencing NIDRR's research. An emerging universe of disabilities,
incorporating disabilities related to underlying social and
environmental conditions, such as poverty, isolation, and aging, has
created new targets for the dissemination of research findings.

Finally, there is increased recognition of 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. 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 and 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
will 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 the early
integration of dissemination and utilization features into research
projects. NIDRR will continue efforts 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

To enhance the dissemination and utilization of research, NIDRR will
undertake a number of activities, including establishing a national
information center, creating databases, developing consumer
partnerships, providing specialized assistance to grantees, using
electronic media and telecommunications, targeting new audiences, and
evaluating dissemination methods.

Establishing a National Dissemination Center. NIDRR will establish a
national dissemination center to address long-term dissemination and
utilization objectives for individuals, groups, and communities that
represent diverse geographic, multicultural, and socioeconomic
populations. This center will provide technical assistance to grantees
to improve their dissemination activities; conduct selected national
dissemination projects; and serve as a resource on dissemination theory,
new dissemination 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 national dis-semination center will:

disseminate research findings that have been published in refereed
academic journals by NIDRR researchers;

translate complex research findings into an accessible language and
format in consumer-oriented publications;

maintain a library and information center, such as the National
Rehabilitation Information Center (NARIC), with archival and
bibliographic retrieval capacity; and

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:

maintain a database of assistive technology products, such as ABLEDATA,
that is accessible to consumers and service providers, and available on
the Internet;

make key publications, such as NIDRR's Program Directory and Compendium
of Research Product from NIDRR Grantees and Contractors, available on
the Internet; and

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:

explore the potential for developing partnerships with centers for
independent living and state vocational rehab-ilitation agencies to
identify, repackage, and market information specific to their needs;

provide technical assistance to community organizations or public
agencies to facilitate the adaptation of research findings into
practical use; and

provide technical assistance and training to consumers and consumer
organizations on accessing, interpreting, and using new information.
Training includes the use of electronic information sites and how to
provide feedback to the research process.

Providing Specialized Assistance to Grantees in Their Dissemination
Roles. NIDRR centers and other grantees are important information
resources.

To enhance their productivity in disseminating their research results,
NIDRR will:

promote the publication of research findings in scientific journals and
in consumer-oriented publications;

provide technical assistance on accessibility and marketing;

develop intercenter and interproject linkages for routine communication
and information-sharing;

assure the timely availability of research findings and products in
usable form for targeted user groups; and

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. To
capitalize on this potential, NIDRR will:

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;

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;

examine the role of distance learning approaches in dissemination;

explore communications strategies for effective Internet searches for
disability-related information, including directories of sites and a
thesaurus of key words; and

provide technical assistance and training to consumers and consumer
organizations on accessing, interpreting, and using new information,
including training on the use of electronic information sites. Emphasize
ways to increase access among 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 requires thoughtful efforts to reach new
audiences. To facilitate these efforts, NIDRR will:

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 that is appropriate for people with
cognitive impairments or who are non-English-speaking;

improve the dissemination of information from NIDRR-funded projects to
consumers with culturally diverse backgrounds as well as to elderly
people, newly disabled individuals, and other people with disabilities
who may not be reached by traditional dissemination methods;

address general audiences that influence the opportunities available to
people with disabilities. These general audiences include employers,
manufacturers, educators at all levels, economic development and
planning personnel, service establishments, the media, and policy-makers
at local, state, and national levels; and

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:

conduct projects to advance theory development in dissemination and
utilization and to evaluate the application of the various dissemination
and utilization approaches;

test methods for measuring the utilization and impact of research
results for different target audiences; and

evaluate the appropriateness and effectiveness of Web-based
dissemination and distance education models for conveying information to
the range of target audiences.

## Chapter 9: CAPACITY BUILDING FOR REHABILITATION RESEARCH 

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. Capacity-building involves training those who
participate in all aspects of the disability research field, including
scientists, service providers, and consumers.

For the future, training efforts will be based on the new paradigm of
disability and emphasize cross-disciplinary collaboration and
participatory research. They will take into account trends in science,
society, and disability culture itself. NIDRR will make creative use of
funding mechanisms to meet these challenges.

Priorities in Capacity Building

NIDRR's capacity-building responsibilities are multifaceted. Its
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:

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;

teach researchers to conduct research that explicates disability as a
contextual phenomenon;

prepare researchers to conduct disability studies that are holistic,
interdisciplinary, and cognizant of the cultural context of disability;

develop the capacity of researchers to conduct studies in new settings,
(e.g., homes, workplaces, schools, recreational facilities,
community-based organizations);

train rehabilitation practitioners in the application of
research-generated knowledge and new techniques; and

train consumers, family members, and advocates how to use 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 reflects sound scientific practices and uses 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 policy-making. 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 sizes. 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 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 emphasize research training
opportunities for minorities and people 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

The NIDRR Rehabilitation Research and Training Centers (RRTCs) will
advance further the statutory requirement to train service providers in
the application of research findings to real-world needs of people 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. Unidimen-sional 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 modifying the disabled
person's functions without equally emphasizing the need to change the
person's environment cannot 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 future. 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 disability in context, and explaining the adapting
process, has several implications for the research training endeavor.
The training must:

emphasize interdisciplinary research and design of methodologies that
can test complex hypotheses;

attract researchers from disciplines that are not usually involved with
disability and rehabilitation research. These include law, economics,
architecture, business, marketing, demographics, public policy, and
administrative sciences, among others;

incorporate an understanding of disability policy and disability studies
among researchers in all disciplines;

apply the principles of the ADA---universal access and
accommodations---in all research areas;

include consumers in the research endeavor; and

focus on the adapting process, which refers to adjusting to changes. The
interaction of these changes provides the basis for understanding how
best to proceed in improving participation in society among 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 people with disabilities. People with disabilities are now viewed
as individuals who are adapting to challenges (e.g., personal assistance
services, use of assistive technology, access, accommodations, civil
rights) in their response to society (e.g., sociopolitical analysis of
activism, disability culture, independent living), and in society's
response to them (e.g., stigma, policy, economics, transportation,
housing). The merging of these issues into an encompassing academic area
is the genesis of disability studies.

In disability studies, there is a convergence of theory, technique, and
methodology from a range of disciplines to enhance one's 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:

creation of a body of knowledge that is comprehensive and holistic;

training of a cadre of researchers and policy-makers familiar with that
knowledge base;

inclusion of the perspectives of individuals with disabilities in
designing curriculum and research to reflect the experiences of people
with disabilities; and

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, workplaces, 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.

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 also must 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 researchers are appropriately
sensitive 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. Studying 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 people 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 studies 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, a shift has occurred 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---RRTCs,
RERCs, Advanced Rehabilitation Research Training Grants (ARRTs), Switzer
Fellowships, the NIDRR Scholars Program, and the Minority Development
Program---to help meet future challenges.

Rehabilitation Research and Training Centers and Rehabilitation
Engineering

Research Centers

NIDRR has a long tradition of funding RRTCs at universities, medical
rehabilitation facilities, and vocational and social service agencies.
Recently, training has been given increased importance in the mission of
the RERCs as well. Enhancing the capacity to conduct disability and
rehabilitation research requires planning and coordination of three key
components of research training: mentors and trainers, relevant topics,
and appropriate sites.

NIDRR Centers have the critical mass of expertise and knowledge to
provide:

advanced, experiential training for researchers;

classroom training for researchers and clinicians at undergraduate and
graduate levels;

short-term training to teach scientists new methodologies;

in-service training for rehabilitation practitioners;

training for consumers, their families, and representatives in
implications and applications of new research-based knowledge;

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;

education and training in disability professions and in disability
research for individuals with disabilities and for minority individuals;
and

training of rehabilitation educators and educators in a range of related
disciplines.

Advanced Rehabilitation Research Training Grants

ARRTs will provide advanced research training that integrates
disciplines; teaches research methodology in the environmental, or new
paradigm, context; and trains researchers in disability studies and
rehabilitation science. 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 policy-makers.

NIDRR Scholars Program

This program will recruit undergraduates with disabilities to work in
NIDRR-funded centers and to develop projects that will expose them to
disability and rehabilitation research issues, while at the same time
providing work experience and income. This program is an innovative
approach aimed at generating interest in research careers for people
with disabilities.

Minority Development Program

This program has focused on Historically Black Colleges and Universities
and institutions serving primarily Hispanic, Asian, and American Indian
students. NIDRR will evaluate this program to determine the extent to
which it is achieving the objectives of Section 21 of the Rehabilitation
Act and to implement necessary strategies to enhance outcomes.
Meanwhile, NIDRR is implementing new strategies for capacity-building
among minority researchers focusing on collaboration, exchange of
expertise, and advanced training.

New Technologies for Training

Educators, students, clinicians, scholars, and consumers are turning
more frequently to the use of new media and telecommunications
technology for conveying information and imparting skills. NIDRR
respects the efficiency and impact that distance learning and Web-based
education can achieve. As a research institute, NIDRR also will
undertake evaluations of the effectiveness of using these techniques
with various types of trainee populations, subject matter, and
objectives.

## Chapter 10: ENHANCING NIDDR\'S MANAGEMENT OF RESEARCH 

Overview

The research endeavor benefits from thoughtful management practices
specifically tailored to enhance relevance, importance, scientific
quality, coordination, participation, flexibility, productivity, and
communication. This plan already has addressed such elements of
management improvement as using appropriate modes of participatory
research, expanding dissemination and utilization of research, and
enhancing capacity-building, which are all part of NIDRR's program-matic
efforts. This section of the plan focuses on several additional
management strategies that NIDRR will use to enhance its programs.

Management Strategies

NIDRR will employ a number of management strategies in support of its
five-year agenda. Among these are an emphasis on Centers of Excellence;
enhanced coordination of federal disability research; improved program
evaluation and performance review; enhanced peer review process;
increased collaboration, including interdisciplinary and
cross-disciplinary research; creative funding mechanisms; international
research; innovative strategies to manage intellectual property;
expanded use of information technology; the reallocation of resources;
and continuous participatory planning.

Centers of Excellence

NIDRR is committed to regenerating a network of Centers of Excellence in
disability and rehabilitation research. The term Center of Excellence is
used widely in research and medical fields and may indicate either a
judgment or an aspiration. NIDRR believes the disability constituency
deserves Centers of Excellence and is applying standards and procedures
to ensure that all research, dissemination, technical assistance, and
model service centers will develop and adhere to standards for Centers
of Excellence. In 1988, an independent evaluation of the RRTCs developed
a set of standards for an RRTC Center of Excellence. These standards
included items of research administration, balance of activities,
synergy, accountability, coordinated programs, and capacity to improve
rehabilitation.

Recognizing that Centers of Excellence result from a partnership between
NIDRR and its grantees, NIDRR has revisited the concept of Center of
Excellence in its new program review process, described later in this
section. The program review process has led to the further
identification and development of the criteria needed to set up and
operate Centers of Excellence. Essential criteria for excellence are
described below.

Excellence in Administration:

Support from an appropriate host institution

Appropriate process for research management and quality control

Ability to leverage resources and attract funding from other sources

Involvement of multiple disciplines

Outcomes-oriented evaluation

Protection of human subjects

Excellence in Scientific Research:

Expertise in and contribution to state-of-the-art research

Application of appropriate and rigorous scientific methods, whether
quantitative or qualitative

Advancement of theory and knowledge base in the field

Expansion of research tools and methods

Professional recognition and publication

Outstanding investigators

Excellence in Relevance and Productivity:

Responsiveness to priority

Utility to consumers

Development of knowledge to improve rehabilitation

Systematic dissemination of knowledge in relevant and accessible formats

Involvement of individuals with disabilities in all phases of the
research process

Excellence in Capacity-Building:

Provision of advanced research training for staff, including persons
with disabilities and minorities

Provision of training to service providers on using results of research
efforts

Provision of training to consumers in the uses of research

Infusion of disability knowledge into other research areas

NIDRR will continue to refine the concept of Centers of Excellence
through ongoing dialogue with its Centers and other science
organizations, and will adapt the concept for RERCs, model systems, and
other major NIDRR programs.

Enhancing Coordination of Federal Disability Research

Congress recognized the importance of coordination among the range of
agencies in the area of disability research by establishing, in Sec. 203
of the Rehabilitation Act of 1973, an Interagency Committee on
Disability Research (ICDR), to be chaired by the director of NIDRR.

The statute lists the required membership in the ICDR---the 11 federal
agency senior officers---and charges the committee to identify and seek
to coordinate all federal plans and projects in disability research,
after receiving input from disabled individuals. The ICDR, which has 35
agencies as invited participants, has adopted by consensus a set of
objectives and some specific operating procedures. The ICDR objectives
are:

The ICDR objectives are:

To avoid duplication of efforts in disability research;

To identify gaps in research;

To identify opportunities for research collaboration;

To develop mechanisms for and facilitation of disability research
collaboration;

To promote synergy through combined resources;

To share information and research findings in order to build a more
systematic and cohesive Federal effort;

To comprise an identifiable entity that can disperse information to
consumers, the private sector, policy-makers, and the public about
government-wide activities; and

To assist in developing a responsive and relevant federal infrastructure
for disability research, by reporting to the Congress and the president,
federal agencies, and the public.

Coordination of related activities in disparate public programs is an
ongoing challenge. The scope of disability suggests that many diverse
agencies will be involved in providing services and conducting research
on relevant issues. This involvement is both inevitable and desirable.
Disability is at least a peripheral concern for many agencies whose
central missions lie elsewhere---for example, the Departments of the
Interior, Justice, and Transportation; the Federal Communications
Commission; and the Federal Aviation Administration. Disability is
closer to the core, but still not the primary mission of agencies such
as Social Security Administration, Health Care Financing Administration,
and the Administration on Aging. This dispersion of resources and
authorities may benefit disabled people by ensuring that their concerns
are recognized and dealt with by a wide array of mainstream agencies.
Diverse constituencies also benefit from multiple avenues of access to
research funding, policy-making, and services.

Potential benefits of effective coordination of these diverse agencies
include opportunities to address a common problem with a critical mass
of resources; avoid unintended and wasteful duplication; exchange
information in a system that increases all parties' awareness of issues;
support complementary and synergistic research; leverage resources or
provide joint funding of research; and develop a level of informed
policy-making and leadership for the field.

The ICDR can play several roles while coordinating activities in
disability research. The ICDR can educate federal agencies and others
about disability issues; take the lead in modeling accessibility;
advance important concepts such as universal design or the new paradigm
of disability; and promote achievement of the goals of the ADA. The ICDR
focuses efforts on gathering information about disability research and
making it available to a wide range of interested agencies.

The ICDR will focus on issues that concern the missions of many agencies
in cooperating to build collaborations. Disability statistics and
capacity-building in disability research are examples of two issues to
be addressed by the ICDR in the next five years. All ICDR agencies and
other constituents need disability statistics in their planning,
policy-making, resource allocation, and progress evaluations. Most of
these agencies also have responsibility for collecting statistics about
disability or, at least, collecting program data about disabled
participants. The ICDR will focus on improving the relevance of data
collection efforts to the new paradigm of disability, the emerging
universe of disability, the goals of the ADA, and NIDRR's goals of
increased independence, productivity, and inclusion.

Similarly, each agency that supports disability research has a stake in
ensuring the existence of a cadre of highly qualified researchers to
investigate issues related to medical and vocational rehabilitation,
health care, societal supports, employment, accessible environments and
technology, and civil rights. The ICDR can leverage the investment of
federal dollars in training through cooperative strategic planning and
coordinated program implementation, such as shared funding support of
various project components.

The ICDR has adopted strategies that will support individual agencies in
achieving their goals. The first major strategy is to maintain effective
subcommittees in critical areas. The second strategy is to increase the
flow of information to all participating agencies. The third strategy is
to develop collaborative research and training agendas.

The ICDR has three subcommittees: the ICDR Medical Rehabilitation
Research Subcommittee (co-chaired with the Centers for Disease Control
and Prevention and NCMRR), the ICDR Technology Subcommittee (co-chaired
with the National Science Foundation), and the long-standing Interagency
Subcommittee on Disability Statistics (co-chaired with the National
Center for Health Statistics).

Each ICDR subcommittee plans and directs the development of an
informational database of federal (and other) research in the pertinent
area. This may be a compendium of projects or products or an electronic
database that can be updated and accessed. For example, the ICDR
Technology Subcommittee sponsored the preparation of the Compendium of
Federal Technology that Benefits People with Disabilities (1998). This
compendium contains abstracts of research projects, other technology
activities, and technology transfer activities of member agencies----all
available on the World Wide Web.

Participation by ICDR Committee and subcommittee members in critical
activities of other agencies is a major step toward increasing awareness
and collaboration in the field. NIDRR has invited many representatives
of the other agencies to participate in peer review panels, long-range
planning, priority development, and its new process of NIDRR program
reviews that assess the work of NIDRR centers. Jointly developed
priorities and shared funding of projects have resulted from these
processes. For the future, the ICDR will continue to meet quarterly,
hold annual public hearings, provide administrative support for the
three subcommittees, and provide an annual report to the president and
the Congress.

Program Evaluation and Performance Review

In the past year, NIDRR has begun a process of intensive review for all
RRTCs and RERCs during their funding cycles. It has also developed a set
of measures in accordance with the Government Performance and Results
Act (GPRA) that it will implement to link program outcomes to agency
performance standards. NIDRR program reviews take the form of reverse
site visits in which center personnel present research and training
outcomes in sessions attended by NIDRR senior staff, staff of related
federal agencies, other researchers, consumers with disabilities,
service providers, private sector representatives such as employers or
manufacturers, and information brokers. These sessions allow for
intensive examination, discussion, feedback, and assessment of each
center using the Center of Excellence framework.

In the future, NIDRR will expand its program reviews to other NIDRR
programs (Model Systems, Disability Business and Technical Assistance
Centers, and Dissemination Projects) and will conduct reviews at least
twice in a center's performance period. There will be a formative review
early in the funding cycle to examine methodology, create linkages to
other entities, and develop specific performance measures and outcomes
data requirements. A summative review session will be completed near the
end of the grant cycle to assess outcomes and implications for future
research.

Program review reports will provide input into assessing how well NIDRR
is meeting the objectives and indicators set forth in its GPRA plan.
NIDRR, like other federal research agencies, will measure research
performance and outcomes in the GPRA context. NIDRR has participated in
the Research Roundtable, a cooperative effort of many federal research
agencies to develop a coherent strategy for applying GPRA to research.
NIDRR has developed a two-part performance measurement strategy, based
on approaches discussed at the roundtable. The strategy includes both
metric measures of productivity (e.g., the number of refereed
publications, citations in the literature, people trained) and
qualitative narratives which evaluate the scientific excellence,
relevance, and dissemination of a project or a center's activities.
Research is a lengthy and sometimes serendipitous process; it is
impossible to predict what even the most productive research will
achieve by any given time. Furthermore, a failed hypothesis can be a
project success. At the same time, NIDRR and other federal research
agencies share the concerns of Congress and the administration that high
standards of program performance and accountability for outcomes must be
applied to agency-sponsored activities.

Enhancing Peer Review

NIDRR is implementing a project to redesign and improve important
features of its peer review process to provide more continuity of
evaluations and improved feedback to applicants. These improvements will
include standing panels for some competitions, more useful feedback to
applicants, more training for members of peer review panels, a process
to identify and handle repeat applications, clarifications of funding
criteria and processes, and regularly scheduled annual competitions.

Creative Funding Mechanisms

Four goals of NIDRR's management reform are to stimulate more
collaborative research, to support some significant longitudinal
research without diminishing competition in the program, to increase the
frequency of multidisciplinary research, and to provide grantees with
the flexibility to make rapid responses to new scientific and
technological developments while maintaining program accountability.
Periodic competition ensures the vitality of the program and its
openness to new ideas. NIDRR will develop marketing strategies and
capacity-building that will expand participation in disability research
by leading scientists and innovators, individuals with disabilities, and
those from diverse backgrounds.

Currently, collaborative research is implemented in the form of shared
protocols and common databases, or in the more diffuse form of
subcontracting for discrete parts of a whole. While subcontracting for
outside expertise is often convenient, closer working partnerships are
to be encouraged. Grantees find the current mechanisms for collecting
common data to be administratively and fiscally cumbersome. NIDRR will
explore other strategies to promote collaboration, including earmarking
funds specifically for collaborative research projects, authorizing
grantees to reserve a portion of their centers' funds to support
collaborative efforts, and creating coordinating centers in some subject
areas.

Disability is a complex, dynamic, and long-term phenomenon.
Understanding the course of disablement, rehabilitation, and adaptation
frequently requires collection of data over extended time periods.
Within the general 60-month limit on grant periods, NIDRR will look for
ways to support longitudinal studies in those instances of critical
importance. Two mechanisms may be used. NIDRR may create administrative
exceptions or create managerial consortia that can transfer the research
effort beyond five years. The latter approach might be achieved through
the contract mechanism in which the government has clear ownership of
all products.

While single-discipline research is important, implementing the new
paradigm of disability in research will demand the simultaneous and
synergistic attention of many disciplines. In most fields, there is
little academic or practical incentive for interdisciplinary research.
Indeed, interdisciplinary research tends to become "non-disciplinary"
(i.e., nonscientific) research if the underlying theories, assumptions,
techniques, and analytical methods are not clearly specified and if the
relation to the theoretical and methodological base of each involved
discipline is not clearly stated. NIDRR will promote inter-disciplinary
research, if appropriate, through program requirements, selection
criteria, and new training approaches.

Knowledge develops rapidly in some fields, and certain shifts or
breakthroughs in medicine, technology, or public policy can present
opportunities for improvement in the lives of people with disabilities
if these changes are addressed immediately. Conversely, some emerging
technologies may present barriers to people with disabilities if they
are not addressed rapidly. For example, an employed person with a
disability may no longer be able to perform a computer job, if new
technologies are inaccessible. Thus, NIDRR is developing a systematic
process for grantees to direct resources to capitalize on these
unforeseen opportunities while maintaining accountability and
productivity.

International Research

Background. The Rehabilitation Act of 1973, as amended, (Sec 204
(b)(6)), states that the director of NIDRR is authorized to

conduct\...a program for international rehabilitation research,
demonstration, and training for the purpose of developing new knowledge
and methods in the rehabilitation of individuals with disabilities in
the United States, cooperating with and assisting in developing and
sharing information found useful in other nations in the rehabilitation
of the individuals with disabilities and initiating a program to
exchange experts and technical assistance in the field of rehabilitation
of individuals with disabilities with other nations as a means of
increasing the level of skill of rehabilitation personnel.

NIDRR's international activities are linked to (1) improving the skills
of rehabilitation personnel in America through international data,

\(2\) generating international research, which provides needed data,

\(3\) seeking international collaborations for the development of
assistive technology, and

\(4\) strengthening disability leadership globally.

NIDRR has carried out its international authority through a variety of
activities, including research projects; exchanges and training of
scientists, engineers, and other appropriate personnel; exchanges of
scientific and technological information; conferences; the support of
databases; and other avenues. Examples of these activities include (1)
funding collaborative research centers in India through the United
States-India Fund, (2) sponsoring information exchange through support
for the World Wide Web Initiative with the National Science Foundation,
(3) supporting exchange of disability and rehabilitation experts in
issues affecting women with disabilities, and (4) conducting policy
studies and forums in areas such as international standards, technology,
and special education for the United Nations, the European Union, and
the Organization for Economic and Cooperative Development.

Future Plans. The emergence of a true global economy dictates a new role
in international activities to promote the well-being of people with
disabilities through access to jobs, better technology, and social
supports. In addition, the U.S. disability research community desires to
share the new disability paradigm internationally. To meet these
concerns, NIDRR has established the following priorities:

International Standards. NIDRR will help develop international standards
in assistive technology, which will be recognized and debated by
regulatory agencies or consortia worldwide. The adoption of these
standards will greatly facilitate research exchange and assist consumers
in finding appropriate, high-quality products such as wheelchairs and
digital telephones.

Joint Research. International collaborative research and development
efforts----particularly in assistive technology, universal design,
employment, independent living, wellness, and Participatory Action
Research----could lead to important discoveries. NIDRR will seek
international partners for research projects of mutual benefit. Both
partners will share their expertise and project expenses.

Conferencing and Exchange. One of the greatest benefits of an
international effort is the effective exchange of information and
expertise. NIDRR will create an integrated range of activities to
promote the new paradigm in concept and in methodology. International
conferences, exchange scholars, and capacity-building will encourage
personal contact, hands-on participation in data and research
methodology, and practical applications of research results.

Database Expansion. Contemporary technology permits more effective use
of the many databases in the international arena that can provide help
and resources to both researchers and consumers in the United States.
NIDRR desires to be a catalyst in linking relevant databases globally so
that the universe of information is available to any researcher or
consumer anywhere on the planet. NIDRR-sponsored information systems
will be the \"gateway\'\' to international information gathering.

Access to Information Technology and Telecommunications. The growing
significance of telecommunications and information technology on a
global basis has the potential to enable individuals with disabilities
to interact with their environments through employment, communication,
and participation in the community. NIDRR will continue efforts to
ensure the availability and accessibility of worldwide information
technology to people with disabilities.

Management of Intellectual Property

New technologies, especially electronic information media, are
stimulating disputes about the ownership of knowledge. This is
particularly complicated when the government is financing the
development of instruments, databases, or devices. The general principle
of grantee right to patent or copyright products, with government right
of free use, can be complex to administer. NIDRR will work cooperatively
with other federal agencies and grantees to discuss intellectual
property guidelines that protect taxpayers' interests in having broad
access to knowledge developed with public funds, and yet protect the
intellectual property rights of scientists and inventors.

Enhanced Use of Information Technology

NIDRR plans to continue using information technology aggressively to
facilitate many aspects of its future activities. Activities include
increased and more efficient sharing of research results and data,
encouraging more collaborative projects and using common protocols and
databases more often. To increase com-munication with and among
grantees, NIDRR will use various communications strategies, including
posting information on NIDRR and its grantees on Web sites. NIDRR's
accessible Web site, with hypertext links to grantee Web sites, already
provides considerable information about NIDRR grantees.

In addition, NIDRR is developing a program database that will provide
NIDRR and others with up-to-date information about NIDRR grantees and
research findings. This program database will allow analyses of program
characteristics, which will result in more efficient management and
evaluation of individual projects and the entire NIDRR program. NIDRR
also will create linkages for sharing information among centers and
projects. These will include bulletin boards, list-servs, and print
newsletters. Additionally, NIDRR will continue to sponsor the effective
use of teleconferencing, video-conferencing, and emerging
telecommunications methods.

Allocation of Resources

The effective allocation of resources is required to achieve NIDRR
goals. NIDRR intends to allocate increased resources in four particular
areas related to the objectives of its five-year plan. These resources
will:

support the Centers of Excellence, concentrating on large-scale
problems;

support investigator-initiated research projects that use the best ideas
emerging from the field;

expand capacity-building activities, including training researchers with
disabilities; and

develop funding opportunities for collaborative projects.

NIDRR's RRTC program will restructure from a format of many small
centers, which handle a limited scope of work, to more substantial
centers. The new centers will have the capacity and flexibility to
address emerging problems by working across disciplines and
disabilities. The change----a complex and time-consuming effort----will
involve redirecting some existing resources while protecting valuable
research capacity. To continue the success of NIDRR's field-initiated
research project program, NIDRR is increasing the number and size of its
awards to ensure that excellent researchers continue to pursue this
funding opportunity.

NIDRR also plans to review and expand its training activities to foster
the continued development of excellent researchers, especially
individuals with disabilities, for the disability research endeavor. In
addition, NIDRR plans to develop a training database to identify and
track people trained in NIDRR's programs and their participation in the
disability and rehabilitation fields. The training database will help
facilitate the development of a trainee network that will include a Web
site; a list-serv for people who participate in NIDRR training programs;
and a directory of current and past trainees, scholars, and fellows.
This network will contribute to more opportunities for in-person
presentations and interactions among NIDRR trainees.

Continuous Participatory Planning

NIDRR will formalize an ongoing process for reviewing and revising the
Long-Range Plan on a periodic basis, and for ensuring that meaningful
annual priorities are crafted based on the plan. This process will
involve:

establishing agenda-setting work groups in each of the outcome areas
designated in the plan. These work groups will meet periodically and
will be responsible for substantive recommendations, in their respective
areas, for both annual priorities and new five-year goals;

holding at least one public hearing each year. This hearing, which will
focus on one substantive area, will evaluate current work and identify
future needs in that area. These hearings will be held in different
parts of the country, and will take advantage, where possible, of
videoconferencing or satellite broadcasting techniques to allow the
hearings to be available to more people nationwide. NIDRR will seek
organizations active in the particular substantive areas to cosponsor
the hearings;

convening ad hoc focus groups in subject areas that need further
exploration before including them as an annual priority;

using both internal and external participants to develop a combined
Strategic/Program Plan and beginning that process two years in advance
of the expected products; and

evaluating NIDRR performance under GPRA, in part to determine whether
annual priorities are derived from and are consistent with the plan.

NIDRR will assess the progress of its continuous planning effort. Then,
NIDRR will convey this information in an annual report to the Congress.

# Appendices

## Appendix A. Abbreviations and Acronyms

  ---------- ------------------------------------------------------------
  **\        Americans with Disabilities Act
  **ADA      

  ADHD       Attention Deficit Hyperactivity Disorder

  ADLs       Activities of Daily Living

  ARRT       Advanced Rehabilitation Research Training Center

  CPS        Current Population Survey

  CRPs       Community-Based Rehabilitation Programs

  DHHS       Department of Health and Human Services

  FIM        Functional Independence Measure

  GPRA       Government Performance and Results Act

  IADLs      Instrumental Activities of Daily Living

  ICDR       Interagency Committee on Disability Research

  ICIDH      International Classification of Impairments, Disabilities,
             and

             Handicaps

  IDEA       Individuals with Disabilitites Education Act

  IOM        Institute of Medicine

  JTPA       Job Training Partnership Act

  NARIC      National Rehabilitation Information Center

  NASA       National Aeronautics and Space Administration

  NCD        National Council on Disability

  NCMRR      National Center for Medical Rehabilitation Research

  NHIS       National Health Interview Survey
  ---------- ------------------------------------------------------------

NIDRR National Institute on Disability and Rehabilitation Research NIH
National Institutes of Health OSEP Office of Special Education Programs
OSERS Office of Special Education and Rehabilitative Services PAS
Personal Assistance Services RACs (state) Rehabilitation Advisory
Councils RERC Rehabilitation Engineering Research Center RRTC
Rehabilitation Research and Training Center RSA Rehabilitation Services
Administration SBIR Small Business Innovative Research SIPP Survey of
Income and Program Participation SSA Social Security Administration SSDI
Social Security Disability Insurance SSI Supplemental Security Income VR
Vocational Rehabilitation WHO World Health Organization

## Appendix B. Planning Process and Participants 

To develop a clear, comprehensive plan that meets the needs of the
disability community and advances scientific knowledge, NIDRR
implemented a collaborative planning process with its many constituents.
The planning process was characterized by diversity with varied avenues
of input available to a wide range of parties interested in NIDRR's
programs. NIDRR solicited input from individuals with disabilities,
researchers, service providers, advocates, disability organizations,
professional organizations, and individuals who are traditionally
underserved.

**Steering Committee**

In 1995, NIDRR created a Long-Range Plan Steering Committee to consult
on the development process. The committee consisted of 15 experts from
the constituent community who brought diverse perspectives and
experiences to the process. The committee met formally four times in one
year and provided other assistance as needed. The major task of the
committee was to review input from other sources and make recomendations
to NIDRR concerning the plan's design and future planning activities.
Appendix C lists the steering committee members.

**Public Hearing**

A public hearing was held in Washington, D.C., to gather information
related to research needs and opportunities for the development of a
long-range plan for coordinated research in four areas of disability
research: medical and technology rehabilitation, employment, independent
living in the community, and capacity-building.

Clifford Brubaker, chair of NIDRR's Long-Range Plan Steering Committee,
and

the director of NIDRR, co-chaired the hearing. Witnesses had a broad
range of perspectives on disability; they included people with
disabilities and their family members, advocacy organizations,
professional organizations, universities, and service delivery
organizations. Representatives from the disability media attended the
hearing and published articles about it. Written testimony was accepted
for 30 days after the hearing.

Witnesses raised a number of shared concerns in all four areas of
disability-related research. These included:

• Meaningful involvement of individuals with disabilities and their
families in research-related activities and closer linkages to
community-based organizations.

-   • Dissemination of research results to service providers, consumers
    with disabilities, and policy-makers to maximize the impact of the
    findings on the lives of people with disabilities.

-   • Use of collaborative, interdisciplinary, and multi-site research
    to better address the complex needs of individuals with
    disabilities.

-   • Investigation of the effects of new service delivery mechanisms on
    people with disabilities.

-   • Outcomes research in all program areas to help ensure continued
    service to people with disabilities in this era of accountability.

-   • National-level data sets describing people with disabilities and
    their lives, particularly individuals with disabilities from diverse
    ethnic and racial backgrounds, to support program and policy
    advances.

-   • Assessment of the impact of the ADA on independence, employment,
    and community integration.

**Commissioned Papers**

NIDRR commissioned papers in eight subject areas to provide scholarly
background for the *Long-Range Plan,* including a summary of the
state-of-the-art in rehabilitation and an analysis of the research needs
and opportunities in each area. NIDRR then held a series of workshops on
each topic area to solicit feedback on the draft papers and to discuss
future research directions. Participants included paper authors, federal
representatives, researchers, and servicer providers, including
individuals with disabilities and individuals from diverse backgrounds.
A list of paper authors and workshop participants follows this summary.
In addition, all of the commissioned papers were available to all NIDRR
grantees on Web sites and through list-servs for review and comment.

**Other Input**

NIDRR also considered input from the National Council on Disability, the
Interagency Committee on Disability Research, and a myriad of consensus
conferences and symposia on topics ranging from employment, income
supports, managed health care, technology policy, telecommunications,
and the research infrastructure that were sponsored by NIDRR, other
government agencies, universities, advocacy groups, and private
industry.

**Publication of the Plan**

NIDRR published a proposed *Long-Range Plan* in the *Federal Register*
on October 26, 1998, and invited comments from the public. Subsequently,
NIDRR published a revised version in the *Federal Register* on August
20, 1999, that included an analysis of, and response to, the public
comments. On December 7, 1999, NIDRR published the final *Long-Range
Plan,* which replaced the previous version.

**Long-Range Plan Workshop Series Author and Participant List**

Authors of commissioned papers are indicated by boldface type.

**Workshop on Employment Workshop on Physical Medicine and Restoration**

  --------------------------------- -------------------------------------
  **Henry McCarthy**                Mark Hill

  Louisiana State University        Virginia Commonwealth University

  **Michael Millington**            David Johnson

  Louisiana State University        University of Minnesota

  **Douglas C. Strohmer**           David Miller

  Louisiana State University        South Dakota Rehab Services

  **David C. Stapleton**            Ruth Royal-Hill (deceased)

  The Lewin Group                   District of Columbia Rehabilitation

                                    Services Administration

  **Becky Hayward**                 

  Research Triangle Institute       Tom Seekins

                                    The University of Montana

  Clifford Brubaker                 

  University of Pittsburgh          David Vandergoot

                                    Center for Essential Management

  Suzanne Bruyere                   Services

  Cornell University                

                                    Douglas Watson

  Phil Flench, CEAP                 University of Arkansas

  Washington Business Group on      

  Health                            Edward Yelin

                                    University of California-San

                                    Francisco
  --------------------------------- -------------------------------------

**Dudley S. Childress**

Northwestern University Rehabilitation Institute of Chicago

**Samuel L. Stover, M.D.**

University of Alabama at Birmingham

**Bruce M. Gans, M.D.**

Rehabilitation Institute of Michigan

Murray Goldstein, M.P.H, D.O. United Cerebral Palsy Research and
Educational Foundation

Marvin Brooke, M.D.\
Tufts New England Medical Center

Chukuka S. Enwemeka\
University of Kansas Medical Center

Thomas Findley, M.D.\
UMD NJ

Wayne Gordon\
Mt. Sinai Medical Center

Margaret Stineman, M.D.\
University of Pennsylvania

> Sandra Welner, M.D.

**Workshop on Rehabilitation Engineering and Technology**

**Douglas A. Hobson**

University of Pittsburgh

**Richard A. Foulds**

University of Delaware

Lawrence A. Scadden National Science Foundation

Ronald L. Mace, FAIA Barrier Free Environments Inc.

Nell Bailey RESNA

Don Barrett OSERS

U.S. Department of Education

Diane Bryen Temple University Dudley S. Childress Rehabilitation
Institute of Chicago

Dixon Cleveland LC Technologies

Alexandra Enders, OTR University of Montana

Judith E. Harkins Gallaudet Research Institute

Jane Hauser OSEP

U.S. Department of Education

Clifford Lanham

A. Keith MillerSandia National Laboratory John Nelson Rehabilitation
Services Administration

William Paul United Technologies Corporation

William Peterson National Rehabilitation Hospital

> Doris Rouse\
> Research Triangle Institute
>
> Sheldon Simon, M.D.\
> Ohio State University Hospital
>
> Gregg Vanderheiden\
> Trace Center/University of\
> Wisconsin

**Workshop on Independent Living**

> **Corrine Kirchner** Carol J. Gill American Foundation for the Blind
> Health Resource Center Rehabilitation Institute of Chicago

**Simi Litvak**

World Institute on Disability Harlan Hahn

University of Southern California Adrienne Asch Wellesley College
Margaret A. Nosek

Baylor College of Medicine Fabricio Balcazar Center for Research on
Women University of Chicago-IL with Disabilities

Sharon Barnartt Anita Silvers Gallaudet University San Francisco State
University

Michael Donnelly John Youngbauer Berkeley CIL University of Kansas

**Workshop on Community Integration**

**Judith A. Cook**

University of Illinois at Chicago William Anthony

Boston University **Jessica A. Jonikas, M.A.** Center for Psychiatric
Rehabilitation University of Illinois at Chicago

Mary Ann Beall

**Charlie Lakin**

University of Minnesota David Braddock

University of Illinois, Chicago Joseph G. Hollowell, M.D., M.P.H.
Centers for Disease Control and Neil Brown Prevention CMHS

  --------------------------------- -------------------------------------
  Sharon Davis                      Pat Laird, J.D.

  The Arc                           Administration on Developmental

                                    Disabilities

  Thomas K. Gilhool, Esquire        

  Public Interest Law Center of     Geronimo Robinson

  Philadelphia                      Community Residences

  Wayne Gordon                      Patti Wilson

  Mt. Sinai Medical Center          North Shore Arc
  --------------------------------- -------------------------------------

**Workshop on Disability Policy and Services**

**Gerben DeJong**

National Rehabilitation Hospital Research Center

**Bonnie O'Day**

National Rehabilitation Hospital Research Center

Donald E. Galvin Commission on Accreditation of Rehabilitation
Facilities

James R. Knickman Robert Wood Johnson Foundation

Barbara Altman Agency for Health Policy Research

Jerome Bickenbach Queen's University

Fred Collignon University of California-Berkeley

Diane Golden Missouri Assistive Technology

Ken Hurdle Senate Office of Research California State Senate

Debbie Kaplan Issue Dynamics Inc.

Clifford Lanham

Mitchell LaPlante University of California, San Francisco

Leo A. McManus Social Security Administration

Kay Schriner University of Arkansas

Richard Scotch University of Texas-Dallas

Beverlee Stafford Rehabilitation Services Administration

David Stapleton The Lewin Group

Sara Watson Family Policy Council

Jane E. West Consultant to the Social Security Administration

Ilene Zeitzer Social Secuirty Administration Office of Disability

**Workshop on Dissemination and Utilization**

**Laura Edwards** Elaine Ostroff Pennsylvania College of Optometry
Adaptive Environment Center

Ronald L. Mace, FAIA Alfonso B. Perez Barrier Free Environments,Inc.
Fiesta Educativa

Samuel L. Stover, M.D. Kerry Sperry University of Alabama at Research
America Birmingham

Susan Stoddard Peter Caws InfoUse George Washington University

Thomas Stripling Beth Haller Paralyzed Veterans of America Towson State
University

Glenda V. Such, M.Ed. Cyndi Jones Abilitech Mainstream Magazine

Steven J. Taylor Kym King Syracuse University Media Development Group

John D. Westbrook Don Olson National Center for the Rehabilitation
Institute of Chicago Dissemination of Disability Research

**Workshop on Capacity-Building**

**David B. Gray** M. Carolyn Baum Washington University Washington
University Medical

School Harley E. Flack Wright State University Carole Burnett

Howard University Max J. Starkloff Paraquad Alexandra Enders, OTR

University of Montana Kate Pew Wolters Steelcase Foundation Fredrick E.
Menz

University of Wisconsin-Stout Marian A. Minor, PT University of Missouri
at Columbia

Jerry C. Parker University of Missouri at Columbia

David Roberts University of Missouri at Columbia

Virginia W. Stern American Association for the Advancement of Science

## Appendix C. Steering Committee Members 

**Clifford Brubaker (chair)** is the dean of the School of Health and
Rehabilitation Sciences at the University of Pittsburgh. Prior to this
position, he was a professor at the University of Virginia for 18 years.
He is a nationally known researcher in seating and mobility and a leader
in assistive technology and rehabilitation engineering. He is a founding
member of the Rehabilitation and Assistive Technology Association
(RESNA) and served as its president in 1993--94. He has received patents
for several inventions. Brubaker holds a Ph.D. in exercise physiology.

**Robert H. Bruininks** is the executive vice president and provost of
the University of Minnesota and a professor of educational psychology.
He has long-standing interests in educational evaluation and
accountability, school-linked services, and strategic planning and
educational reform. He established The Institute on Community
Integration, a university-affiliated program on developmental
disabilities, in 1985 to provide interdisciplinary training, exemplary
services, and information and applied research on behalf of people with
developmental disabilities and their families. Bruininks holds a Ph.D.
in educational psychology.

**Ricardo R. Fernández** is president of Herbert H. Lehman College, a
four-year liberal arts college of The City University of New York. He
has held academic and administrative positions at Marquette University
and the University of Wisconsin-Milwaukee, and served as a Fellow of the
American Council on Education. His research interests include
educational equity and the recruitment, retention, and advancement of
minority students, faculty, and academic staff in higher education.
Fernández holds a Ph.D. in romance languages from Princeton University.

**James Paul Firman** is president and CEO of the National Council on
the Aging Inc. Firman's previous positions include president of the
United Seniors Health Cooperative and senior program officer at the
Robert Wood Johnson Foundation. He is a widely recognized expert and
consumer advocate on many issues affecting older persons, such as home
care, long-term care, health insurance and financing issues, and
intergenerational programs. Firman has an Ed.D. in education from
Columbia University.

**Harley E. Flack (deceased)** was the president of Wright State
University. Flack was previously provost and executive vice president at
Rowan College of New Jersey and vice president for academic affairs and
dean of the faculty at the State University of New York at Old Westbury.
From 1974-87, Flack served as the founding dean and professor of the
college of Allied Health Sciences at Howard University. He also served
as a strategic planning consultant for more than 25 institutions in the
United States. Flack was president of the National Society of Allied
Health and held a Ph.D. in counselor education from the State University
of New York at Buffalo.

**Donald E. Galvin** is president and CEO of the Commission on
Accreditation of Rehabilitation Facilities, the preeminent
standards-setting and accrediting body promoting quality services for
people with disabilities. From 1989--93, Galvin was the vice president
for programs of the Washington Business Group on Health and director of
the Institute for Rehabilitation and Disability Management. He was
associate superintendent of education for the Michigan Department of
Education and also served as the director of its Bureau of
Rehabilitation Services. Galvin has a Ph.D. in counseling and guidance.

**Murray Goldstein** is the medical director of the United Cerebral
Palsy Research and Educational Foundation and is the interim executive
director of the United Cerebral Palsy Associations of the United States.
He was formerly the director of the National Institute of Neurological
Disorders and Stroke of the National Institutes of Health and assistant
surgeon general in the United States Public Health Service. Dr.
Goldstein is recognized internationally as a leader in the clinical,
scientific, and science administration aspects of disorders of the
nervous system.

**Joseph G. Hollowell, Jr., M.D.**, is the medical chief of the Office
of Disability and Health at the Centers for Disease Control and
Prevention. He is the former chief of the Developmental Disabilities
Branch of the Division of Birth Defects and Developmental Disabilities.
He is board-certified in pediatrics and has a master's in Public Health
from the University of California-Berkeley. He is a nationally
recognized expert on low-birthweight infants and children with
disabilities. His professional interests include the study of growth in
children, pediatric endocrinology, and issues surrounding the
definitions, understanding, and prevention of disabilities.

**James R. Knickman** is vice president at The Robert Wood Johnson
Foundation, a national philanthropy that awards grants focusing on
efforts to improve the health and health care of Americans. Knickman
directs grantmaking programs in health policy research, evaluation of
innovations related to health care delivery and health promotion, and
care received by the chronically ill. Prior to joining the foundation,
Knickman was a professor of Health Administration at New York
University's Robert F. Wagner Graduate School of Public Service.
Currently, he serves on the Board of Trustees of the Robert Wood Johnson
University Hospital.

Knickman received his Ph.D. in public policy analysis from the
University of Pennsylvania.

**Simi Litvak** is director of the Research and Training Center on
Personal Assistance Services at the World Institute on Disability (WID)
in Oakland, Calif. Formerly the research director of the Research and
Training Center on Public Policy in Independent Living at WID, Litvak is
a nationally known expert in independent living and personal assistance.
She has 30 years of experience in the disability field as a teacher,
researcher, policy analyst, policy-maker, and rehabilitation
professional. Most recently she served as a member of the President\'s
Health Care Reform Task Force. Litvak holds a master's degree and a
Ph.D. in studies in behavioral disabilities from the University of
Wisconsin-Madison.

**Ronald L. Mace (deceased)** was a nationally recognized architect and
product designer. He was president of Barrier Free Environments Inc. in
Raleigh, N.C., a firm that specializes in design for disabled and older
people. He also was director of the Center for Universal Design at the
School of Design at North Carolina State University. He was elected to
the College of Fellows for the American Institute of Architects for his
contribution to the profession in promoting accessible and universal
design. He had received numerous awards, including the Distinguished
Service Award of the president of the United States for long-term
contributions to furthering the rights and independence of people with
disabilities.

**Audrey L. McCrimon** is the assistant secretary of the Illinois
Department of Human Services. As the assistant secretary, McCrimon
directs the agency's core training strategies, customer service and
provider assistance, and Americans with Disabilities Act activities.
Prior to becoming assistant secretary, McCrimon had been the director of
the Illinois Department of Rehabilitation Services, an agency serving
200,000 state residents with disabilities. Before joining the state
government, McCrimon served as deputy commissioner on disability for the
Chicago Department on Aging and Disability and was nominated by the
President in 1994 to serve on the National Council on Disability.
McCrimon holds a master's degree in education from Northern Illinois
University.

**Lawrence A. Scadden** is senior program director for the National
Science Foundation's Program for Persons with Disabilities. Previously,
Scadden served as director of Technology Application Programs for the
Electronic Industries Foundation. He served as the first deputy director
of the National Institute on Disability and Rehabilitation Research.
Scadden is a nationally known expert on technology applications for
people with disabilities and the design of accessible mass market
electronic products. Scadden holds a master's degree in experimental
psychology and a Ph.D. in visual sciences from the University of the
Pacific.

**Max J. Starkloff** is the founder and president of Paraquad Inc.
Starkloff was co­founder and elected president of the National Council of
Independent Living from 1983--85. He was appointed to the president's
Commission on White House Fellowships by the President in 1993. Mr.
Starkloff is an internationally recognized leader in independent living
and has received acclaim from several humanitarian groups.

**Samuel L. Stover, M.D.**, served as medical director of the Spain
Rehabilitation Center, project director for the Research and Training
Center on Spinal Cord Injury, and director of the National Spinal Cord
Injury Statistical Center. Dr. Stover is past president of the American
Spinal Cord Injury Association. In June 1994, he retired as chairman of
the Department of Rehabilitation Medicine and was named Professor
Emeritus. He is a nationally recognized expert in urologic management of
persons with spinal cord injury, and skin and pulmonary complications
following spinal cord injury. Dr. Stover holds a medical degree in
pediatrics from the Jefferson Medical College.

**Kate Pew Wolters** was the Board Chair of the Steelcase Foundation,
the corporate foundation of Steelcase Inc., the world's largest
manufacturer of office furniture. Prior to assuming this position, she
served as executive director of the foundation. She also has served as
the director of the Grand Rapids Center for Independent Living and as a
clinical social worker. Wolters was a presidential appointee to the
National Council on Disability.

## Appendix D. NIDRR Program Mechanisms and Funding Patterns 

NIDRR operates a number of program mechanisms to support research and
related activities as authorized by the Rehabilitation Act. These
mechanisms vary in purpose, duration, and resource allocation.
Rehabilitation Research and Training Centers (RRTCs) and the
Rehabilitation Engineering Research Centers (RERCs) are the primary
recipients of NIDRR resources. As depicted in figure 1.2, these programs
received 22.8 percent and 10.78 percent, respectively, of the \$70
million appropriated to NIDRR in fiscal year 1996.

Support of RRTCs is specified in the statute. RRTCs are funded to
conduct coordinated and advanced programs of research, training, and
information dissemination in general problem areas that are specified by
NIDRR. RRTCs are expected to be multidisciplinary; involve disabled
consumers and their families; provide advanced research training, as
well as training for rehabilitation practitioners, consumers, and
families; and provide undergraduate education. RRTCs are designed to be
national Centers of Excellence and resources for the disability and
rehabilitation field, providing information and technical assistance to
a broad constituency. Each RRTC is typically funded for five years with
an option to recompete. In fiscal year 1996, there were 45 RRTCs. The
average annual base award was \$507,000, with a range of funding from
\$400,000 to \$700,000. Some of the topic areas of RRTCs include
secondary complications in spinal cord injury; community integration of
people with traumatic brain injury (TBI); mental retardation; or mental
illness; vocational rehabilitation outcomes; independent living;
interventions for children with severe behavior problems; aging with a
disability; and personal assistance services.

RERCs also are provided for in the legislation, and are expected to
conduct research of an engineering and technological nature to design,
develop, and test technologies, equipment, assistive devices, and
methods to remove environmental barriers, and innovative models for
rehabilitation technology service delivery. The 1992 amendments to the
Rehabilitation Act specified an increased emphasis on training and
collaboration with rehabilitation service delivery efforts. NIDRR also
expects RERCs, where appropriate, to promote the transfer of new
rehabilitation technologies and engineering knowledge into the
manufacturing, marketing, and distribution processes of industry. In
fiscal year 1996, NIDRR funded 16 RERCs at a total cost of \$10,764,000;
the average award was \$673,000 annually. These are nearly always
five-year awards, with the potential to recompete. Some of the topical
areas of the RERCs include prosthetics and orthotics, wheeled mobility,
hearing enhancement, communication, computer adaptations, and
telecommunications.

### Figure 1.1 

![](media/image4.jpeg){width="6.0152777777777775in"
height="3.3152777777777778in"}

RRTCs-Rehabilitation Research and Training Centers RERC-Rehabilitation
Engineering Research Centers FIR-Field-Initiated Research SCI-Spinal
Cord Injury Systems R&D-Research and Demonstration D&U-Knowledge
Dissemination and Utilization ADA-Technical Assistance on Americans with
Disabilities Act RTG-Research Training Grants SBIR-Small Business
Innovative Research Fellowships-Fellowships MRDP-Minority Research and
Development Program Other-Conferences, planning, evaluation, priority
and peer review, and more

### Figure 1.2 

![](media/image5.jpeg){width="6.1402777777777775in"
height="3.495138888888889in"}

The statute also provides for directed research, carried out in the
Research and Demonstration (R&D) Projects program, a program of discrete
research grants directed toward solving specific problems identified by
NIDRR. The Knowledge Dissemination and Utilization (KD&U) Program, and
the program of Technical Assistance to Facilitate Implementation of the
Americans with Disabilities Act, better known as the Disability and
Business Technical Assistance Centers (DBTACs), are also examples of
NIDRR-directed priorities in discrete project areas. These programs
support grants for periods of three to five years, and together
accounted for \$15 million in 1996. Examples of R&D projects include
development of model systems for traumatic brain injury and burns, the
emerging universe of disability, and unique issues of women with
disabilities. KD&U projects include the National Center for
Dissemination of Rehabilitation Research, a national clearinghouse on
rehabilitation information, and a resource center on integration and
mental retardation.

The law also provides for two capacity-building programs---Fellowships
and Advanced Rehabilitation Research Training Grants (ARRTs).
Fellowships are awarded to individuals in various stages of their
careers to support one year of independent research in a selected area
of disability and rehabilitation. ARRTs are awarded to institutions of
higher education to support advanced training in research in any
discipline related to disability and rehabilitation. These grants which
are typically for five years, fund stipends to trainees, mentoring,
didactic instruction, hands-on research experience, and opportunities
for presentation and publication.

The statute provides that NIDRR support a service demonstration and
research program directed at developing and evaluating improved methods
and systems of care for individuals with spinal cord injuries, the Model
Demonstration Projects for Spinal Cord Injury, known commonly as the SCI
Model Systems. Appropriations language requires that \$7 million be
allocated to this program. There are currently 18 model systems, with
broad geographic distribution serving people in inner city, rural, and
suburban areas.

NIDRR created a program of field-initiated (FI) research in 1984 in
response to recommendations from the field. The purpose of this program
is to encourage researchers to submit research and development projects
outside those specified by NIDRR, to supplement and complement NIDRR's
directed research portfolio, and to address research issues in promising
and innovative ways. The level of resources allocated to this program
has varied substantially over the years, but in fiscal year 1996, 53 FI
grants, including 20 new awards, were made for \$6.5 million, or close
to 10 percent of the NIDRR appropriation. NIDRR has begun to increase
its investment in the FI Program in response to recommendations from the
field. FI research projects cover all aspects of NIDRR's domain,
including employment, independent living, medical rehabilitation,
development of new technologies, all disability populations, and a full
range of methodologies.

To relate NIDRR's current pattern of funds allocation to the goals that
underlie this plan, an effort has been made to classify NIDRR's current
projects according to the major subject areas (health and function,
access and functional independence through technology, employment, and
independent living and community integration), plus policy research,
capacity-building, and knowledge dissemination. This classification was
complicated enormously by the fact that NIDRR's projects and centers
reflect the multifaceted nature of disability and the holistic nature of
rehabilitation. Many, if not most, projects and centers are directed at
solutions to problems in more than one subject area. For example, Spinal
Cord Injury Model projects are concerned with health and function,
return to the community, and employment. This classification overlooks
the large amount of resources directed to knowledge dissemination and
capacity-building, and to some extent policy research, in all centers
and projects. However, it was determined that a non-duplicative
representation of the allocation of funds was essential; therefore,
arbitrary decisions were made to classify each center or project in only
one subject area. Programs that included either health and function or
technology development were classified in those areas, regardless of
their other components. However, due to the substantial work on
independent living and employment done in the Spinal Cord Injury Model
projects, one-quarter of their funds were counted in each of these two
categories and one-half in health and function. As one of its research
management improvements, NIDRR is constructing a database that will
permit more precise calculations of resource distributions. Table 1
depicts this classification by topical area.

### Table 1

![](media/image6.png){width="4.840277777777778in"
height="2.513888888888889in"}

#   {#section-2 .unnumbered}

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