[Federal Register: October 26, 1998 (Volume 63, Number 206)]
[Notices]
[Page 57189-57219]
From the Federal Register Online via GPO Access [wais.access.gpo.gov]
[DOCID:fr26oc98-118]
[[Page 57189]]
_______________________________________________________________________
Part III
Department of Education
_______________________________________________________________________
National Institute on Disability and Rehabilitation Research; Notice of
Proposed Long-Range Plan for Fiscal Years 1999-2004; Notice
[[Page 57190]]
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DEPARTMENT OF EDUCATION
National Institute on Disability and Rehabilitation Research;
Notice of Proposed Long-Range Plan for Fiscal Years 1999-2004
SUMMARY: The Secretary proposes a Long-Range Plan (LRP) for the
National Institute on Disability and Rehabilitation Research (NIDRR)
for fiscal years (FY) 1999-2004. As required by the Rehabilitation Act
of 1973, as amended, the Secretary takes this action to outline
priorities for rehabilitation research, demonstration projects,
training, and related activities, and to explain the basis for these
priorities.
DATES: Comments must be received on or before November 25, 1998.
ADDRESSES: All comments concerning this proposed LRP should be
addressed to Donna Nangle, U.S. Department of Education, 600 Maryland
Avenue, S.W., room 3418, Switzer Building, Washington, D.C. 20202-2645.
Comments may also be sent through the Internet: comments@ed.gov. You
must include the term ``Long-Range Plan'' in the subject line of your
electronic message.
FOR FURTHER INFORMATION CONTACT: Donna Nangle. Telephone: (202) 205-
5880. Individuals who use a telecommunications device for the deaf
(TDD) may call the TDD number at (202) 205-2742. Internet:
Donna__Nangle@ed.gov
Individuals with disabilities may obtain this document in an
alternate format (e.g., Braille, large print, audiotape, or computer
diskette) on request to the contact person listed in the preceding
paragraph.
Invitation to Comment: Interested persons are invited to submit
comments and recommendations regarding these proposed priorities. All
comments submitted in response to this notice will be available for
public inspection, during and after the comment period, in Room 3424,
Switzer Building, 330 C Street S.W., Washington, D.C., between the
hours of 9:00 a.m. and 4:30 p.m., Monday through Friday of each week
except Federal holidays.
SUPPLEMENTARY INFORMATION: This proposed LRP presents a five-year
agenda anchored in consumer goals and scientific initiatives. The
proposed LRP has several distinct purposes:
(1) To set broad general directions that will guide NIDRR's
policies and use of resources as the field of disability enters the
21st century;
(2) To establish objectives for research and dissemination that
will improve the lives of individuals with disabilities and from which
annual research priorities can be formulated;
(3) To describe a system for operationalizing the Plan in terms of
annual priorities, evaluation of the implementation of the Plan, and
updates of the Plan as necessary; and
(4) To direct new emphasis to the management and administration of
the research endeavor.
This proposed LRP was developed with the guidance of a
distinguished group of NIDRR constituents--individuals with
disabilities and their family members and advocates, service providers,
researchers, educators, administrators, and policymakers, including the
Commissioner of the Rehabilitation Services Administration, members of
the National Council on Disability, and representatives from DHHS.
The authority for the Secretary to establish a LRP is contained in
sections 202(h) of the Rehabilitation Act of 1973, as amended (29
U.S.C. 762(h).
Electronic Access to This Document
Anyone may view this document, as well as all other Department of
Education documents published in the Federal Register, in text or
portable document format (pdf) on the World Wide Web at either of the
following sites:
http://ocfo.ed.gov/fedreg.htm
http://www.ed.gov/news.html
To use the pdf you must have the Adobe Acrobat Reader Program with
Search, which is available free at either of the preceding sites. If
you have questions about using the pdf, call the U.S. Government
Printing Office at (202) 512-1530 or, toll free at 1-888-293-6498.
Anyone may also view these documents in text copy only on an
electronic bulletin board of the Department. Telephone: (202) 219-1511
or, toll free, 1-800-222-4922. The documents are located under Option
G--Files/Announcements, Bulletins and Press Releases.
Note: The official version of this document is the document
published in the Federal Register.
Applicable Program Regulations: 34 CFR Parts 350 and 353.
Program Authority: 29 U.S.C. 760-764.
Dated: October 19, 1998.
Judith E. Heumann,
Assistant Secretary for Special Education and Rehabilitative Services.
Long Range Plan Table of Contents
Section One: Background
Chapter 1: Introduction and Background
Chapter 2: Dimensions of Disability
Section Two: NIDRR Research Agenda
Chapter 3: Employment Outcomes
Chapter 4: Health and Function
Chapter 5: Technology for Access and Function
Chapter 6: Independent Living and Community Integration
Chapter 7: Associated Disability Research Areas
Section Three: Priorities for Related Activities
Chapter 8: Knowledge Dissemination and Utilization
Chapter 9: Capacity Building for Rehabilitation Research and
Training
References
Section One
Chapter 1: Introduction and Background
``Research has the potential to reinvent the future for millions of
people with disabilities and their families'' (Richard W. Riley, U.S.
Secretary of Education).
Two developments have converged to enhance the significance of
disability research. First, breakthroughs in biomedical and
technological sciences have changed the nature of work and community
life. As these breakthroughs provide the potential for longer and more
fulfilling lives for individuals with disabilities, they reinforce the
second major development--successful independent living and civil
rights advocacy by disabled persons. This intersection of scientific
progress and empowerment of disabled persons has generated momentum for
disability research. These developments highlight the importance of
more fully integrating disability research into the mainstream of U.S.
science and technology policy, and into the Nation's economic and
health care policies.
An estimated 43 million Americans are significantly limited in
their capacity to participate fully in work, education, family, or
community life because they have a physical, cognitive, or emotional
condition that requires societal accommodation. Public Law 101-336, the
Americans with Disabilities Act (ADA) of 1990, declares that
individuals with disabilities have fundamental rights of equal access
to public accommodations, employment, transportation, and
telecommunications. The recognition of these rights, and of society's
obligation to facilitate their attainment, provides the opportunity for
major improvements in the daily lives of individuals with disabilities.
It is the mission of the National Institute on Disability and
Rehabilitation Research (NIDRR) to generate, disseminate, and promote
the
[[Page 57191]]
full use of new knowledge that will improve substantially the options
for disabled individuals to perform regular activities in the
community, and the capacity of society to provide full opportunities
and appropriate supports for its disabled citizens.
NIDRR's Statutory Purpose
The inception of a Federal rehabilitation research program was part
of the legacy of the late Mary E. Switzer, pioneering director of the
Federal-State vocational rehabilitation program. By establishing NIDRR
1 in 1978, through Amendments to the Rehabilitation Act of
1973 (Public Law 93-112), Congress realized Switzer's vision and
created a research institute in the public interest. As such, NIDRR
must generate scientifically based knowledge that furthers the values
and goals of the disability community, the knowledge needs of service
providers, and the creation of rational public policy.
---------------------------------------------------------------------------
\1\ Established as the National Institute of Handicapped
Research, the Institute's name was changed to NIDRR by the 1986
Amendments to the Rehabilitation Act.
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In founding NIDRR, Congress recognized both the opportunities for
technological and scientific advances to improve the lives of
individuals with disabilities and the need for a comprehensive and
coordinated approach to research, development, demonstration,
information dissemination, and training. The Rehabilitation Act of
1973, as amended, (with significant changes in 1992), charged this
Institute with the responsibility to provide a comprehensive and
coordinated program of research and related activities to maximize the
full inclusion and social integration, employment, and independent
living of individuals of all ages with disabilities, with particular
emphasis on improving the coordination and effectiveness of services
authorized under the Act. Related activities were mandated to include
the widespread dissemination of research-generated knowledge and
practical information to rehabilitation professionals, individuals with
disabilities, researchers, and others; the promotion of the transfer of
rehabilitation technology; and an increase in opportunities for
researchers who are individuals with disabilities or members of
minority groups.
NIDRR is ideally positioned to facilitate the transfer of new
knowledge into practice given its administrative co-location with two
major service programs--the Rehabilitation Services Administration
(RSA) and the Office of Special Education Programs (OSEP)--in the
Office of Special Education and Rehabilitative Services (OSERS).
NIDRR's linkage to the greater science community through its leadership
of the Interagency Committee on Disability Research (ICDR) affords an
opportunity to facilitate the transfer of advances in basic research
into the agenda for applied research and knowledge diffusion.
To further advance work in the field of applied research, the
legislation requires a Long-Range Plan,2 updated every five
years, describing NIDRR's future research agenda. This Long-Range Plan
presents a five-year agenda anchored in consumer goals and scientific
initiatives. The plan has several distinct purposes:
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\2\ As a component of the Department of Education within OSERS,
NIDRR is guided by the Department's Strategic Plan, the OSER's
Strategic Plan, and NIDRR's own strategic goals and objectives as
laid out in its performance plan for the Government Performance and
Results Act (GPRA). The Rehabilitation Act, however, calls for a
plan from NIDRR--one that identifies research needs and sets forth
priorities. This Long-Range Plan describes the issues related to the
content and management of NIDRR's research and other activities that
will constitute the substantive portion of NIDRR's strategies to
achieve its GPRA performance objectives.
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(1) To set broad general directions that will guide NIDRR's
policies and use of resources as the field of disability enters the
21st century;
(2) To establish objectives for research and dissemination that
will improve the lives of individuals with disabilities and from which
annual research priorities can be formulated;
(3) To describe a system for operationalizing the Plan in terms of
annual priorities, evaluation of the implementation of the Plan, and
updates of the Plan as necessary; and
(4) To direct new emphasis to the management and administration of
the research endeavor.
This Long-Range Plan was developed with the guidance of a
distinguished group of NIDRR constituents--individuals with
disabilities and their family members and advocates, service providers,
researchers, educators, administrators, and policymakers, including the
Commissioner of the Rehabilitation Services Administration, members of
the National Council on Disability, and representatives from DHHS. It
draws upon public hearings and planning activities conducted under the
prior NIDRR administration (William H. Graves, Director) and on papers
prepared for the Plan by more than a dozen authors. The Plan addresses
a range of diverse objectives, including:
(1) The needs of individuals with disabilities for knowledge and
information that will enable them to achieve their aspirations for
self-direction, independence, inclusion, and functional competence;
(2) The needs of rehabilitation service providers for information
on new techniques and technologies that will enable them to assist in
the rehabilitation of individuals with disabilities;
(3) The needs of researchers to advance the capabilities of science
as well as the body of scientific knowledge;
(4) The needs of society, and its leadership, for strategies that
will enable it to facilitate the potential contributions of all
citizens; and
(5) The need to transfer findings from basic to applied research.
Accomplishments of the Past
In creating NIDRR, Congress recognized that research has
contributed substantially to improvements in the lives of individuals
with disabilities and their families. Individuals with disabilities
live longer, have a better quality of life, enjoy better health, and
look forward to more opportunities than they did 30 years ago, and more
advances occur every day. Today it is commonplace to find people in
wheelchairs traveling in airplanes and private vehicles, people who are
blind using computers, and people who are deaf attending the theater,
while individuals who have significant disabilities are being
recognized as world leaders in the arts and sciences. These
developments owe much to research advances at both the individual and
societal levels.
Advances at the Individual Level
Research, and its use to improve practice, inform policy, and raise
awareness, has changed the lives and the outlook for individuals with
disabilities and their families. For example, the life expectancy of
individuals with paralysis from spinal cord injury has risen
continuously in the past 25 years (DeVivo & Stover, 1995). The
concerted efforts of U.S. researchers, most of whom received NIDRR
support, have succeeded in greatly reducing the number of severe
urinary tract infections and other urinary tract complications in this
population, thereby reducing renal failure as a cause of death for
these individuals from 1st to 12th place over the past two decades.
Decubitus ulcers also have been a serious problem for persons with
spinal cord injury, as well as for those with stroke, multiple
[[Page 57192]]
sclerosis, and other immobilizing conditions. Decubitus ulcers are
destructive and costly to treat, resulting in lost work days, high
medical expenses, hospitalizations, and further secondary
complications. Through the efforts of medical researchers and
rehabilitation engineers, preventive measures have been developed
including seating, cushioning, and positioning devices; behavioral
protocols; and improved treatment methods. These efforts have greatly
reduced the length of time needed for medical treatment of decubiti,
and the cost of this treatment.
Rehabilitation engineering research has been responsible for the
development of new materials for wheelchairs and orthotic and
prosthetic devices that render these technologies comfortable and
serviceable, and allow their users to accomplish many important
personal goals. For example, wheelchair racers using the newest sports
wheelchairs can complete races longer than 800 meters at speeds faster
than those of Olympic runners. In the Paralympics, runners using
prosthetic legs repeatedly have demonstrated impressive speeds. In
everyday life, people who use wheelchairs have benefited from
lightweight, transportable chairs as well as powered chairs that
greatly increase the independence of some users.
Advances at the Environmental-Societal Level
In the last two decades, NIDRR has participated in an unprecedented
expansion of opportunities and possibilities for persons with
disabilities. During this period, technology has greatly enhanced the
accommodation of disability, self-awareness has raised the expectation
of and for persons with disabilities, and advocacy has resulted in
recognition of the rights of persons with disabilities to societal
access and reasonable accommodations.
Today's research on the application of the principles of universal
design to the built environment, information technology and
telecommunications, transportation, and consumer products is based on
the concept of an environment that is usable by persons with a very
broad range of function. For example, after years of research, all
television sets are now equipped with decoders that allow people with
hearing loss to access most programs. In addition, ergonomic research
undergirds the development of workplace designs and the standards for
building codes, consumer products, and the telecommunications
infrastructure. These advances have been instrumental in leading to a
change in the disability paradigm, expanding the focus of disability to
include environmental factors, as well as individual factors.
NIDRR's research activities also have led to the development of
small businesses in hearing aids, prosthetics, communication devices,
and instructional software. NIDRR research provides an important
stimulus in a field of orphan products with small markets.
Expectations for the Future: A New Paradigm of Disability
The identification of trends in the distribution of disabilities,
the emergence of new disabilities, and the prevalence of disability in
the nation's aging population further challenge the disability research
field. Additionally, the research field must develop ways to measure
and address the impact of environmental factors on the phenomenon of
disability.
NIDRR has provided leadership in research leading to a new
conceptual foundation for organizing and interpreting the phenomenon of
disability--a ``New Paradigm'' of disability. This paradigm is a
construction of the disability and scientific communities alike and
provides a mechanism for the application of scientific research to the
goals and concerns of individuals with disabilities. The new paradigm
of disability is neither entirely new nor entirely static. Thomas Kuhn
defines paradigm as ``universal achievements that for a time provide
model problems and solutions to a community of practitioners'' (Kuhn,
1962). The term paradigm is used here in the quasi-popular sense it has
acquired over the last 40 years to indicate a basic consensus among
investigators of a phenomenon that defines the legitimate problems and
methods of a research field. NIDRR posits that the paradigm in this
case applies not to a single field, but to a single phenomenon--
``disability''--as it is investigated by multiple disciplinary fields.
The disability paradigm that undergirds NIDRR's research strategy
for the future maintains that disability is a product of an interaction
between characteristics (e.g., conditions or impairments, functional
status, or personal and social qualities) of the individual and
characteristics of the natural, built, cultural, and social
environments. The construct of disability is located on a continuum
from enablement to disablement. Personal characteristics, as well as
environmental ones, may be enabling or disabling, and the relative
degree fluctuates, depending on condition, time, and setting.
Disability is a contextual variable, dynamic over time and
circumstance. Environments may be physically (in)accessible, culturally
(ex) (in)clusive, (un)accommodating and (un)supportive. For example, on
a societal level, institutions and the built environment were designed
for a limited segment of the population. Researchers should explore new
ways of measuring and assessing disability in context, taking into
account the effect of physical, policy, and social environments, and
the dynamic nature of disability over the lifespan and across
environments.
Perhaps the new paradigm can be understood best in contrast to the
paradigm it replaces and through a clarification of the importance the
paradigm has for all aspects of research and policy (see Table 1). The
``old'' paradigm, which was reductive to medical condition, and is
reflected in many aspects of the Nation's policy and service delivery
arenas, has presented disability as the result of a deficit in an
individual that prevented the individual from performing certain
functions or activities. This underlying assumption about disability
affected many aspects of research, rehabilitation, and services.
The new paradigm of disability is integrative and holistic, and
focuses on the whole person functioning in an environmental context.
This new paradigm of disability is reflected in the ADA and sets a
goals framework for research, policy, and delivery of services and
supports relative to disability. The new paradigm with its recognition
of the contextual aspect of disability--the dynamic interaction between
individual and environment over the lifespan that constitutes
disability--has significant consequences for NIDRR's research agenda
over the next decade. These consequences include: changes in the ways
disability is defined and conceptualized; new approaches for measuring
and counting disability; a focus on new research issues; and changes in
the way research is managed and conducted.
Definitional Issues
One of the fundamental consequences of the new paradigm is the need
for the reformulation of definitions. The definition of disability is
critical to building a conceptual model that identifies relevant
components of disablement and their relationships to each other, and
the dynamic mechanisms by which they change. Typically, definitions of
disability have varied depending on their intended use.
[[Page 57193]]
Table 1.--Contrast of Paradigms
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``Old'' Paradigm ``New'' Paradigmq
----------------------------------------------------------------------------------------------------------------
Definition of Disability........ An individual is limited by his/her An individual requires an
impairment or condition. accommodation to perform functions
required to carry out life
activities.
Strategy to Address Disability.. Fix the individual, correct the Remove barriers, create access through
deficit. accommodation and universal design,
restore function, maintain wellness
and health.
Method to Address Disability.... Provision of medical, vocational, or Provision of supports, e.g., assistive
psychological rehabilitation services. technology, personal assistance
services, job coach.
Source of Intervention.......... Professionals, clinicians, and other Peers, mainstream service providers,
rehabilitation service providers. consumer information services.
Entitlements.................... Eligibility for benefits based on Eligibility for accommodations seen as
severity of impairment. a civil right.
Role of Disabled Individual..... Object of intervention, patient, Consumer or customer, empowered peer,
beneficiary, research subject. research participant.
Domain of Disability............ A medical ``problem''................. A socio-environmental issue involving
accessibility, accommodations, and
equity.
----------------------------------------------------------------------------------------------------------------
Note: Adapted from materials prepared for this Long-Range Plan by Gerben DeJong and Bonnie O'Day.
From a research perspective, definitions used for counting and
describing disabled people have been important, while definitions
establishing eligibility for benefits and services have been critical
from the policy perspective.
The majority of Federal definitions of disability, including those
in the Rehabilitation Act, the ADA, and the National Health Interview
Survey (NHIS), derive from the old paradigm. These definitions all
attribute the cause of limitations in daily activities or social roles
to characteristics of the individual, that is, ``conditions'' or
``impairments.'' Even the ADA, which promotes accessibility and
accommodations, locates the disability with the individual. This is
understandable not only because of the time involved in changing a
paradigm, but because of the lack of a system to define, classify, and
measure the environmental components of disability and the absence of a
model to describe and quantify the interaction of environmental and
individual variables. This need for a change in definitions must be
addressed by activities such as the attempt to revise the International
Classification of Impairments, Disabilities, and Handicaps (ICIDH)
(1980), to better define and measure the factors external to the
individual that contribute to disability.3
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\3\ The ICIDH is a manual issued by the World Health
Organization (WHO) in 1980 as a tool for the classification of the
consequences of disease, injury, and disorder, and for analysis of
health-related issues.
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Measurement Issues
Sources of data, including demographic studies and national
surveys, should be adjusted to reflect new definitions or concepts, and
to take into account contextual variables in survey sampling
techniques. Survey questions must reflect environmental factors as well
as individual factors such as socioeconomic characteristics or
impairments. Under the new paradigm, questions about employment status,
for example, should focus on the need for accommodations as well as on
the existence of an impairment. Measures must enable researchers to
predict and understand changes in the prevalence and distribution of
disabilities--the emerging universe of disability--which illustrates
the link between underlying social and environmental conditions such as
poverty, race, culture, isolation, the age continuum, and the emergence
of new causes of disability, new disability syndromes, and the
differential distribution of disability among various population groups
in our society.
Concern increasingly is focused on vulnerable populations as
researchers find more evidence that disability, and risk thereof, are
disproportionately concentrated in populations in poverty, populations
that lack access to state-of-the-art preventions or interventions, and
populations that are exposed to additional external or lifestyle risk
factors. There are new impairments, exacerbated impairments, or new
etiologies that are associated with socioeconomic status, education
levels, access to health care, nutrition, living conditions, and
personal safety. Individuals from racial, linguistic, or cultural
minority backgrounds are more likely to live in poverty and to lack
adequate nutrition, pre-natal and other health care, access to
preventive care, and health information. These individuals also have
more exposure to interpersonal violence and intentional injury. The new
paradigm's recognition of environmental factors leads to a focus on
underserved minority populations--part of the emerging universe of
disability discussed in Chapter Two.
New Focus of Research Inquiries
The new paradigm adds, or increases the relative emphases on,
certain areas of inquiry. Research must develop new methods to focus on
the interface between person and society. It is not enough simply to
shift the focus of concern from the individual to the environment. What
is needed are studies of the dynamic interplay between person and
environment; of the adapting process, by the society as well as by the
individual; and of the adaptive changes that occur during a person's
lifespan. The aging of the disabled population in conjunction with
quality of life issues dictates a particular focus on prevention and
alleviation of secondary disabilities and co-existing conditions and on
health maintenance over the lifespan. Research must focus on the
development and evaluation of environmental options in the built
environment and the communications environment, including such
approaches as universal design, modular design, and assistive
technology that enable individuals with disabilities and society to
select the most appropriate means to accommodate or alleviate
limitations. Research must lead to a better understanding of the
context and trends in our society that affect the total environment in
which people with disabilities will live and in which disability will
be manifested. These include: economy and labor market trends; social,
cultural, and attitudinal developments; and new technological
developments. Research must develop ways to enable individuals with
disabilities to compete in the global economy, including education and
training methods, job accommodations, and assistive technology.
Research must develop an understanding of the public policy
[[Page 57194]]
context in which disability is addressed, ignored, or exacerbated.
General fiscal and economic policies, as well as more specific policies
on employment, delivery and financing of health care, income support,
transportation, social services, telecommunications,
institutionalization, education, and long-term care are critical
factors influencing disability and disabled persons. Their frequent
inconsistencies, contradictions, and oversights can inhibit the
attainment of personal and social goals for persons with disabilities.
Research Management
The new paradigm requires new models for the management of the
research enterprise that include stakeholder participation,
interdisciplinary and collaborative efforts, more large-scale and
longitudinal research, and new research methodologies to conduct
meaningful studies in the emerging policy environments. Training in
disability and rehabilitation research must be expanded to include
disciplines such as architecture and business. There will be new venues
for the conduct of research, and a need for validated methodologies to
conduct research on dynamic person-environment interactions and under
constricted circumstances. Through training programs, the disability
and rehabilitation research field also should work to increase the
number of disabled and minority researchers.
The role of disabled consumers in research under the new paradigm,
as well as in policy and services, is proactive and participative.
Consumers have a role in shaping their environments and in managing the
supports and services they require. Research must be more inclusive and
participatory, involving not only consumers but also other stakeholders
in understanding and interpreting research, in disseminating and
applying research findings, and in planning, conducting, and evaluating
research. Consumer satisfaction with research as well as services will
be subject to assessment.
Moreover, interdisciplinary and collaborative research are
important for explicating the multidimensional qualities of disability.
It is only through research coordination and collaboration that the
findings of basic research can be translated into the knowledge base of
disability research.
Regardless of its auspices, research is a cumulative and
integrative process; new knowledge comes from many sources, often in
response to concerted pursuit, but also sometimes serendipitously.
Research is often slow-moving and always painstaking; one of the
ironies of the research effort is that a disproved hypothesis may
constitute a successful project, particularly if it diverts the time
and resources of others from an unfruitful direction. As one
participant in the planning process put it, ``sometimes the new
questions you stimulate are more important than the ones you answer in
your research project.'' NIDRR is pleased to have collaborated with
many other Federal and private agencies that sponsor various aspects of
disability and rehabilitation research, and is committed to making
research an inclusive, collaborative, and coordinated undertaking.
Organization of the Plan
This introductory chapter has set the framework for understanding
NIDRR's mission and approach. After the next chapter, ``Dimensions of
Disability,'' the Plan will discuss, in Section Two, an agenda for
research that provides opportunities for leadership and innovation.
NIDRR will implement this research agenda in conjunction with excellent
management strategies, a dynamic program of knowledge dissemination,
and a vigorous effort to build capacity of the field through training
researchers and users of research. Section Three will focus on these
activities.
NIDRR intends this five-year research Plan to balance the competing
demands of consumer relevance and scientific rigor, and to present an
agenda for research that is responsive, scientifically sound, and
accountable, and which makes a contribution to the refinement of the
Nation's science and technology policy.
Chapter 2: Dimensions of Disability
``Policy issues at the forefront of the disability agenda require
accurate data, routinely repeated measures, sophisticated analysis, and
broad dissemination'' (National Council on Disability, Action Steps for
Changes to Federal Disability Data Collection Activities, draft report,
Sept. 19, 1997).
This chapter of the Plan presents NIDRR's operative definitions of
disability, discusses several analytical frameworks for the
categorization of disability, and highlights deficits in current
definitions and data collection. The chapter then presents data about
the prevalence and distribution of disability in the nation and
includes selected demographic data related to the major NIDRR goals of
independence, inclusion, and employment.
Definitions and Concepts of Disability and Disablement
The definition of an individual with a disability under which NIDRR
operates is contained in the Rehabilitation Act of 1973, (Public Law
93-112) as amended, and is as follows: any person who (i) has a
physical or mental impairment which substantially limits one or more of
such person's major life activities, (ii) has a record of such an
impairment, or (iii) is regarded as having such an impairment (29
U.S.C. 705(20)(B)). This definition is similar to those contained in
the ADA and the Technology-Related Assistance for Individuals with
Disabilities Act (Tech Act).
The impairments that lead to limitations in activities may be
related to genetic conditions or to acquired diseases or traumas that
may occur throughout the lifespan. The extent of disability, and the
conditions associated with disability, are significant to individuals
and their families, and to the Nation.
Prevailing definitions, based in statute and supporting program
authorities, clearly do not reflect new paradigm concepts of
disability. Nearly all definitions identify an individual as disabled
based on a physical or mental impairment that limits the person's
ability to perform an important activity. Note that the complementary
possibility--that the individual is limited by a barrier in society or
the environment--is never considered. This Plan suggests that it is
useful to regard an individual with a disability as a person who
requires an accommodation or intervention rather than as a person with
a condition or impairment. This new approach derives from the
interaction between personal variables and environmental conditions.
Because accommodations can address person-centered factors as well as
socio-environmental factors, a ``need for accommodation'' is a more
adaptable concept for the new paradigm.
The various definitions of disability that have formed the basis
for both program eligibility and survey data collection do not have
explanatory power for research purposes. The field of disability
research lacks a widely accepted conceptual foundation for the
measurement of disability as well as consistent definitions for data
collection. In recent years, however, a number of efforts to develop
conceptual frameworks to organize information about disability have
been initiated (see Table 2).
[[Page 57195]]
Table 2.--Concepts in Models of Disability
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ICIDH Nagi/1991 IOM NCMRR
------------------------------------------------------------------------
Disease--Something abnormal Active pathology-- Pathophysiology--Int
within the individual; Interruption or erruption or
etiology gives rise to interference of interference with
change in structure and normal bodily normal
functioning of the body. processes or physiological and
structures. developmental
processes or
structure.
Impairment--Any loss or Impairment--Anatomic Impairment--Loss or
abnormality of al, physiological, abnormalities of
psychological, mental or emotional cognitive,
physiological, or abnormalities or emotional,
anatomical structure or loss. physiological, or
function at the organ level. anatomical
structure or
function, including
losses or
abnormalities, not
those attributable
to the initial
pathophysiology.
Disability--Any restriction Functional Functional
or lack (resulting from an limitation--Restric limitation--Restric
impairment) of ability to tion or lack of tion or lack of
perform an activity in the ability to perform ability to perform
manner or range considered an action or an action in the
normal for a human being. activity in the manner or within
manner or within the range
the range consistent with the
considered normal parts of an organ
that results from or organ system.
impairment.
Handicap--A disadvantage Disability--Inabilit Disability--Inabilit
resulting from an y or limitation in y or limitation in
impairment or disability performing socially performing tasks,
that limits or prevents defined activities activities, and
fulfillment of a normal and roles expected roles to levels
role depending on age, sex, of individuals expected within the
and sociocultural factors. within a social and physical and social
physical context.
environment.
Societal limitation--
Restrictions
attributable to
social policy and
barriers
(structural or
attitudinal) which
limits fulfillment
of roles and denies
access
opportunities that
are associated with
full participation
in society.
------------------------------------------------------------------------
Note: Information in column 1 is from International Classification of
Impairments, Disabilities, and Handicaps, by the World Health
Organization, 1980, Geneva, Switzerland: Author. Information in column
2 is from Disability concepts Revisited: Implications for Prevention,
by S.Z. Nagi, 1991, (p. 7) in Disability in America: Toward A National
Agenda for Prevention by A.M. Pope and A.R. Tarlov (Eds.), 1991,
Washington, DC: National Academy Press. Information in column 3 is
from Research Plan for the National Center for Medical Rehabilitation
Research, (p. 33), by the National Institute of Child Health and Human
Development (1993) (NIH Publication No. 93-3509), Washington, DC: U.S.
Government Printing Office.
Among these efforts are:
(1) The ICIDH, which was developed in 1980 by the WHO. The ICIDH
was designed to provide a framework to organize information about the
consequences of disease. An ongoing revision process is considering
social, behavioral, and environmental factors to refine the concept of
``handicap;''
(2) The ``Nagi model'' (Nagi, 1991), which was presented by the
Institute of Medicine (IOM) in its 1991 Disability in America report
(Pope & Tarlov, 1991). The model was revised in the 1997 report
entitled Enabling America (Brandt & Pope, 1997). The IOM (1997) also
posits that disability is a function of the interaction of individuals
with the social and physical environments. The revised Nagi model
describes the environment as including the natural environment, the
built environment, culture, the economic system, the political system,
and psychological factors. The new model includes a state of ``no
disabling condition.'' The state of disability is not included in this
model because disability is not viewed as inherent in the person, but
rather as a function of the interaction of the individual and the
environment; and
(3) The schematic, adopted by the National Center for Medical
Rehabilitation Research (NCMRR) in its Research Plan (1993, p. 33),
which added the concept of societal limitation.
Continuum of Enablement-Disablement
The most widely used conceptual frameworks applied to disability
and rehabilitation research have in common a continuum that progresses
from some underlying etiology or disease to limitations in physical or
mental function. These functional limitations, when combined with
external or environmental conditions, may lead to some deficit in the
performance of daily activities or expected social roles. In ``Enabling
America,'' the IOM has urged the adoption of a new conceptual framework
as a model for the enablement-disablement process (Brandt & Pope,
1997). This model has the advantage of identifying components of
person-centered and environment-centered variables. The IOM framework
identifies four categories of individual factors (person, biology,
behavior, and resources) and nine categories of external environment
factors (natural, culture, engineered environments, therapeutic
modalities, health care delivery system, social institutions, macro-
economy, policy and law, and resources and opportunities).
NIDRR research focuses on crucial areas of functional loss,
disability, and socio-environmental aspects of the continuum. In
keeping with the new paradigm, NIDRR emphasizes the importance of
explicating the connection between the person and the environment, an
interface that determines the disabling consequences of impairments and
conditions. This study of the dynamic interaction among various
individual and environmental variables requires NIDRR's continued and
increased attention to shaping the structure, management, and capacity
for research. Methodologies are needed, often in an interdisciplinary
context, that can illuminate multiple facets of disablement and
enablement from numerous perspectives.
Limitations in Federal Data Sources
The various Federal data collection efforts that assess the extent
and distribution of disability in society are less than ideal for
measuring the population that meets the NIDRR definition of an
individual with a disability. These efforts generally can be
categorized as either program data, which focus on the recipients of
Federal benefit or service programs, or national surveys that focus on
perceived limitations in activities caused by health conditions. Both
program and survey data focus on the ``physical or mental impairment''
as the cause of the limitation. This is a reductionist approach that
discounts social and environmental factors or assumes that these
factors are subsumed within individual attributes.
The National Health Interview Survey (NHIS) and the Survey of
Income and Program Participation (SIPP), are the two most widely used
sources of survey data to describe the population of
[[Page 57196]]
individuals with disabilities. The data from the Disability Supplement
to the NHIS currently is being analyzed by a number of researchers and
will yield much-needed information on persons with disabilities. The
Disability Supplement is the product of a 1994 to 1996 data collection
effort that was the result of years of cooperative development by
Federal agencies concerned with disability issues. While the Disability
Supplement will have enormous value to its users, the Supplement, like
other data sources, lacks any measures of the environmental factors
(social or physical) that contribute to disablement, as well as any
measures of interaction between person and environment.
Federal data collection efforts, including the Census, the NHIS,
the SIPP, the Current Population Survey (CPS), and many other program-
specific or topical data collections, not only fail to address
important new concepts of disability, but also are limited in other
respects. Sampling procedures may result in the exclusion of low-
incidence disabilities and insufficient information about minority
populations; self-reporting leads to underreporting many conditions;
and survey formats frequently are inaccessible to persons with
cognitive, sensory, or language limitations. Many Federal data
collection efforts, as well as most private ones, do not routinely
include information about persons with disability in their collection
and reporting. Improvements in data quality and availability will be a
key goal of NIDRR in this five-year Plan.
Particular problems exist in defining and quantifying disability in
children. Many service programs rely on diagnostic categories for
eligibility, and even those that have attempted a functional approach
have had difficulty assessing the effect of context, expectations,
transactions with adults, chronicity and duration, in determining the
extent of disability among children. The Office of Special Education
Programs (OSEP)--administers the Individuals with Disabilities
Education Act (IDEA), which mandates that schools have a full range of
services necessary to provide a free and appropriate public education
for children with disabilities. According to OSEP's 1995-1996 IDEA
annual report to Congress, 5.6 million disabled children (ages 3 to 21)
received educational services. Approximately, one-half of these
children were identified as having specific learning disabilities.
Other high incidence disabilities included speech and language
impairments, mental retardation, and serious emotional disturbances.
Because OSEP and other Department of Education offices focus their
research on activities based in the educational system, including the
development of curriculum and teaching methods and the training of
teachers, NIDRR has directed its research on disabled children to
aspects of life outside that arena. These issues include family-child
relations; social relationships; community integration; medical
technologies for replacing, or substituting for, function;
accommodations; and supports to families. NIDRR research also has a
role in addressing the critical problems of succeeding in the
transitions from school to adult life in the community, and in the work
and adult service systems. In a broader context, it is important to
note that 5.5 percent of all American families contain one or more
children with a disability (LaPlante, Carlson, Kaye, & Wenger, 1996).
Children with disabilities are more likely to be found in low-income
families and families headed by single mothers.
Prevalence of Disability
The importance of disability research is underscored by the
frequency and widespread dispersion of disabilities in the U.S.
population. The following data about disability were selected because
of their relevance to NIDRR's specific priorities and to the overall
objectives of this plan.
The 1994 NHIS estimated that 15 percent of the noninstitutionalized
civilian population--some 38 million people--were limited in activity
due to chronic conditions (Adams & Marano, 1995). The Institute of
Medicine interpolated the NHIS data to indicate that 38 percent of
disabilities were associated with mobility limitations, followed by
chronic disease (32 percent); sensory limitations (8 percent);
intellectual limitations (7 percent); and all other conditions (15
percent) (Pope & Tarlov, 1991). The SIPP identified 48.9 million
persons who reported themselves as limited in performing functional
activities or in fulfilling a socially defined role or task. Of these,
24.1 million persons were identified as having a ``severe disability''
(Kraus, Stoddard, & Gilmartin, 1996). Both surveys excluded persons in
nursing homes or institutions, who would be expected to have a high
rate of disability. Including that population through extrapolation has
led to the commonly cited figures of 43 to 48 million Americans with
disabilities.
Both the NHIS and SIPP focus on limitations in major life
activities, due to a physical or mental condition, but also provide
data on persons who are limited in or unable to perform activities of
daily living (ADLs)--such as eating, bathing, dressing, toileting, or
transferring--without assistance or devices, or to perform instrumental
activities of daily living (IADLs)--such as basic home care, shopping,
meal preparation, telephoning, and managing money. Approximately eight
million people reported difficulty with ADLs, and approximately four
million with one or more ADLs needed the assistance of another person
(McNeil, 1993).
The range of these estimates--from approximately 4 million people
who need help simply to sustain their lives to the nearly 40 million
who report any kind of activity limitation--illustrates the danger in
discussing the disabled population or its needs as a homogeneous group.
More refined data are needed to assess the needs for medical and health
care, vocational rehabilitation and employment assistance, supports for
living in the community, and assistive technology.
Demographics of Disability: Age, Gender, Race, Education, Income, and
Geography
Disability is distributed differently in the population according
to characteristics of age, gender, race, and ethnicity, and both region
and size of locality in which a person resides. Educational level is
inversely correlated with the prevalence of disability. Poverty is a
key factor both as a contributing cause and a result of disability.
Table 3 presents NHIS data on sociodemographic correlates of activity
limitations. This table indicates that disability is very likely linked
to other social factors and reinforces the need to address disability
in a broad context.
Emerging Universe of Disability
NIDRR has begun to focus on an ``emerging universe'' of disability,
in which either the conditions associated with disability, their
distribution in the population, or their causes and consequences, are
substantially different from those in the traditional disability
population.
[[Page 57197]]
Table 3.--Degree of Activity Limitation Due to Chronic Conditions, by Demographic Characteristics: 1994
----------------------------------------------------------------------------------------------------------------
Limited in
Unable to amount or kind Limited, but
Characteristic All persons With activity carry on major of major not in major
(in thousands) limitation activity activity activity
(percent) (percent) (percent)
----------------------------------------------------------------------------------------------------------------
All persons..................... 259,634 15 4.6 5.7 4.7
Age:
Under 18 years.............. 70,025 6.7 0.7 4.2 1.8
18-44 years................. 108,178 10.3 3.2 3.9 3.1
45-64 years................. 50,405 22.6 9.2 7.9 5.5
65-69 years................. 9,685 36.7 16.7 11.9 7.3
70 years and older.......... 21,340 38.9 8.1 12.6 19.3
Sex:
Male........................ 126,494 14.4 4.8 5.3 4.3
Female...................... 133,139 15.7 4.4 6.1 5.2
Race:
White....................... 214.496 15.1 4.4 5.8 4.9
African American............ 33,035 16.3 6.3 6.2 3.8
Family Income:
Under $10,000............... 23,363 28 11.2 9.9 6.9
$10,000-$19,999............. 37,271 21.1 7.3 7.7 6.2
$20,000-$34,999............. 54,171 14.8 4.1 6.0 4.7
$35,000 or more............. 100,302 9.4 1.9 3.9 3.6
Geographic Region:
Northwest................... 50,610 14.3 4.3 5.6 4.3
Midwest..................... 63,238 14.6 3.9 6.0 4.6
South....................... 88,088 16.1 5.3 6.0 4.8
West........................ 57,697 14.7 4.6 5.0 5.0
Place of Residence:
Metropolitan statistical
area (MSA)................. 203,079 14.3 4.4 5.5 4.5
Central city............ 79,510 15.8 5.4 5.9 4.5
Not central city........ 123,570 13.4 3.8 5.2 4.5
Not MSA..................... 56,554 17.6 5.4 6.6 5.6
----------------------------------------------------------------------------------------------------------------
Note: From Tables 67-68 in Current Estimates from the National Health Interview Survey, 1994, Series 10, No.
193, by P. F. Adams and M.A. Marano, Hyattsville, MD: National Center for Health Statistics.
This emerging universe is identified with new disabling conditions;
new causes for impairments; differential distributions within the
population; increased frequency of some impairments, including those
associated with the aging of the population; and different consequences
of disability, particularly as related to social-environmental factors,
lifespan issues, and projected demands for services and supports.
Researchers have identified a ``new morbidity'' (Baumeister,
Kupstas, & Woodley-Zanthos, 1993) in which the cluster of factors
associated with poverty--such as poor education, poor medical care, low
birthweight babies, lack of prenatal care, substance abuse,
interpersonal violence, isolation, occupational risks, and exposure to
environmental hazards--have a high correlation with the existence of
impairments, disabilities, and exacerbated consequences of
disabilities. For example, the leading cause of mental retardation is
no longer RH-factor incompatibility, but may be related to any factor
associated with high-risk births, which are more common among low-
income mothers. Interpersonal violence accounts for the rising
incidence of certain conditions, especially spinal cord injury and
traumatic brain injury, among inner-city minority populations. These
developments have enormous implications for research problems to be
addressed and future demands for various types of services.
New illnesses or conditions have emerged in recent years; some, but
by no means all, are poverty-related. AIDS, Attention Deficit
Hyperactivity Disorder (ADHD), violence-induced neurological damage,
repetitive motion syndromes, childhood asthma, drug addiction, and
environmental illnesses are all either relatively new conditions or
ones of increasing prevalence and severity in society. Additionally,
the aging of the population, given the higher rates of many
disabilities among older persons, is another demographic factor that
will influence issues to be addressed by applied research.
As new causes of disabilities emerge, the new paradigm of
disability clearly provides a progressive approach to successfully
addressing environmental and social barriers for people with
disabilities. These new issues have implications not only for
disability research and services, but also for public health and
prevention activities.
Disability, Employment, and Independent Living
Because of NIDRR's statutory concern with improving employment
outcomes for persons with disabilities, it is valuable to present a
brief overview of the employment status of persons with disabilities.
LaPlante & Carlson (1996) report that 19 million Americans with an
impairment or health problem (ages 18-69) were unable to work or
limited in the amount or type of work they could According to the CPS,
about 10 percent of the population between 16 and 64 had work
limitations (different age ranges reflect changing concepts of
``working age'') (LaPlante, Kennedy, Kay, & Wenzer, 1996). Back
disorders, heart disease, and arthritis were frequently reported as
major causes of work disability (LaPlante & Carlson, 1996). However,
mental illness is one of the most work-disabling conditions; data
showed that among adults with serious mental illness (an estimated 3.3
million persons), 29 percent were reported to be unable to work or
limited (18 percent) in their ability to work
[[Page 57198]]
because of their mental disorder (Barker, Manderscheid, Hendershot,
Jack, Schoenborn, & Goldstrom, 1992).
While the presence of any disability reduces the likelihood of
employment, the effect is closely tied to the severity of the
disability. The SIPP estimates that among persons 21 to 64 years old,
the employment rate was 81 percent for persons with no disability, 67
percent for persons with a disability that was not severe, and 23
percent for persons with a severe disability (McNeil, 1993). Only 21
percent of persons needing personal assistance with ADLs or IADLs were
employed (U.S. Bureau of the Census, 1998). The unemployment rate for
persons with disabilities, which counts only those persons in the labor
force, was 12.6 percent, more than twice the unemployment rate of
nondisabled Americans (Stoddard, Jans, Ripple, & Kraus, 1998).
Disabled persons who work full time typically earn less than
nondisabled workers with the earnings gap widening with age and
severity of disability. Persons with disabilities who do not work may
qualify for income support payments under Social Security Disability
Insurance (SSDI) (if they have a work history) or Supplemental Security
Income (SSI). As of January 1996, 5 million persons received SSDI
benefits, including 4.2 million disabled workers, 686,300 disabled
adult children, and 173,800 disabled widows and widowers (Social
Security Administration, 1996). A 1993 report cited mental disorders as
the most frequent cause of disability (35 percent), followed by
musculoskeletal, circulatory, and nervous system disorders (Social
Security Administration, 1993).
At the end of 1993, about 3.8 million persons under age 65 received
SSI benefits due to disability and poverty (Kochhar & Scott, 1995).
More than one-half of these persons had either mental retardation or
mental illness. The Social Security Administration (SSA) has noted a
sharp increase in the number of disabled SSI recipients, an increasing
proportion with mental illness, and a growing number who enter the
rolls as children and remain for long periods (Kochhar & Scott, 1995).
Many of these increases in both SSDI and SSI programs can be
attributed to program changes (such as different eligibility
requirements and outreach), to a shifting from other income support
categories, to changes in stability of employment and private health
insurance, and to the bundling of health insurance coverage with income
supports. Eligibility for public health insurance is generally tied to
the receipt of income transfer payments from a public income support
program.
Data elements about residential status, family composition, and
need for personal assistance services illuminate some of the
characteristics of the disabled population. Of the estimated 48.9
million persons with disabilities from the SIPP data, 32.5 million own
their own homes and 16.4 million rent (McNeil, 1993). An estimated 9.8
million live alone and over 27 million persons with disabilities are
married. An estimated 8.3 million individuals with disabilities live in
a household with their spouse and children under 18 years of age, while
an estimated 1.9 million are single parents with disabilities.
An estimated 20.3 million families, or 29.2 percent of all 69.6
million families in the United States have at least one member with a
disability (as measured by having an activity limitation). This rate
for families is much higher than the rate of individuals having a
disability. Further, there appears to be a clustering of people with
disabilities in families and households, with a much higher than
expected likelihood of both adult partners having disabilities and a
greater than average chance that children with disabilities will live
with one or more parents with disabilities. Families headed by adults
with disabilities are more likely to live in poverty or to be dependent
on public income support programs.
Conclusion
This chapter of the Plan highlighted some important disability
statistics that illustrate the scope of disability in the United
States. Throughout the Plan, significant data also are interspersed
about use of assistive technology, access to health care, labor force
participation, and community living. In addition, Chapter Seven
addresses the need for future research in disability data collection.
Overall, current data on disabilities provide both a picture for
concern and a cause for optimism. People with disabilities tend to have
lower than average educational levels, low income levels, and high
unemployment rates, especially for people with severe disabilities.
Moreover, the relationship between disability and poverty tends to be
bi-directional, with the conditions of poverty creating a high risk for
disability and disability itself leading to poverty. At the same time,
it is clear that more individuals with disabilities are completing high
school and college educations, and education is closely correlated with
employment and independence. Increasingly, individuals with
disabilities are living in the community, marrying, and raising
families. These individuals may receive increased attention from
businesses as they constitute a market for accessible housing and
adaptive devices, recreation, adult education, accommodated travel,
health care, and other services.
It is also true that, while the presence of a disability may have
deleterious effects on individuals and families, society increasingly
is able to assist persons with disabilities in their need for equity
and access through new discoveries in research, improved service
methods, and informed policy decisions.
Section Two: NIDRR Research Agenda
Chapter 3: Employment Outcomes
``With the ADA, we began a transformation of the proverbial ladder
of success for some Americans into a ramp of opportunity for all
Americans. Yet, * * * (so many) Americans with severe disabilities are
still unemployed, * * * (making it) clear we still have many steps to
take before people with disabilities have full access to the American
dream'' (Tony Coelho, Chairman, President's Committee on Employment of
People with Disabilities, Keynote Address ``Employment Post the
Americans with Disabilities Act,'' National Press Club, Washington, DC,
November 17, 1997).
Overview
Unemployment and under-employment among working-age Americans with
disabilities are ongoing, and seemingly intractable, problems. Data
from the Census Bureau on the labor force status of persons ages 16 to
64 in fiscal year 1996 highlight the magnitude of this problem. While
four-fifths of working-age Americans are in the labor force and more
than three-fourths are working full time, less than one-third of
persons with disabilities are in the labor force, and fewer than one-
quarter are working full time. Fully two-thirds of working-age persons
with disabilities are not in the labor force; other research suggests
that a substantial portion of this staggering figure can be attributed
to disincentives inherent in social and health insurance policies, to
discouragement, and to lack of physical access to jobs. Finally, among
those in the labor force, the unemployment rate for disabled persons is
more than double that of persons without disabilities (12.6 percent
versus 5.7 percent). Disparities in employment rates and earnings are
even greater for disabled individuals from minority
[[Page 57199]]
backgrounds and those with the most significant disabilities (Stoddard,
Jans, Ripple, & Kraus, 1998).
Economy and Labor Force Issues
Several emerging characteristics of the nation's labor market
exacerbate the difficulties experienced by persons with disabilities in
their attempts to gain employment and even in their motivation to seek
employment. Downsizing, for example, has led to a reduction in the
percentage of the labor force with stable, long-term, benefits-carrying
jobs; much of business and industry is moving to other configurations
that fill their labor needs without requiring a long-term commitment on
the part of the employer. The ``contingent'' workforce takes many
forms, including on-call workers and those in temporary help agencies,
workers provided by contract firms, and independent contractors paid
wages or salaries directly from the company. Many of these jobs lack
security and benefits, particularly health insurance, that most persons
with disabilities require for participation in the labor force.
In addition, while many business spokespersons and educators point
to the need for highly educated, highly skilled workers if the nation
is to succeed in the increasingly competitive global economy, the
reality is more complex. On the one hand, availability of jobs
requiring specialized skills combined with rapid advances in technology
may improve the employment prospects of persons with disabilities as
well as other workers, through such work arrangements as telecommuting,
and an expanding market for self-employment or small businesses. On the
other hand, the labor market appears to be moving toward increasing
bifurcation, with top-tier technocracy jobs for persons with
sophisticated work skills, and lower-tier unskilled service and
maintenance jobs for the less prepared.
Assisting individuals with significant disabilities in moving from
dependency on public benefits or family support, or from episodic,
poor-paying jobs, into stable jobs that will allow them to become self-
supporting, is a complex challenge. This challenge involves a number of
economic sectors, and service and support systems, and must include an
examination of social policies. Providing appropriate assistance
requires an extensive knowledge base encompassing economic trends,
education and job training strategies, job development and placement
techniques, workplace supports and accommodations, and empirical
knowledge of the impact of social and health insurance policies on job-
seeking behaviors.
State-Federal Vocational Rehabilitation Program
For the past 75 years, the primary source of publicly funded
employment-related services to improve the employment status of
disabled persons, especially those with significant disabilities, has
been the State-Federal Vocational Rehabilitation (VR) service program,
currently authorized under the Rehabilitation Act of 1973, as amended,
most recently in 1998. Funded at $2.2 billion in Fiscal Year 1998 in
Federal funds and a 22 percent State match for a total of about $2.7
billion annually, the program is implemented primarily as a case
management system at the State and local levels. The rehabilitation
counselors negotiate, on behalf of and in consultation with the
consumer, the purchase of a package of services, such as medical
interventions, and supports (e.g., assistive technology and licensure)
that will facilitate achievement of employment outcomes.
As noted by OSERS Assistant Secretary Judith Heumann in recent
testimony to Congress, ``As a group, persons who achieve an employment
outcome as a result of vocational rehabilitation services each year
show notable gains in their economic status,'' (Barriers Preventing
Social Security Recipients from Returning to Work, 1997). The
percentage of persons with disabilities reporting their income as their
primary source of support increased from 18 percent, at the time of
application to the VR program, to 82 percent at the time of exit from
the program (Barriers Preventing Social Security Recipients from
Returning to Work, 1997). The percentage with earned income of any kind
increased from 22 percent at entry to 92 percent at exit. The
percentage working at or above minimum wage rose from 15 to 80 percent.
Nevertheless, Federal policymakers, consumers, advocates, and
rehabilitation professionals remain concerned that persons with
disabilities often are excluded from full participation in the nation's
labor force. In the past several years, for example, SSA has
experienced a very large increase in the number of persons qualifying
for SSI and SSDI, and the public costs of these cash benefits are
substantially increased by the addition of public support for
associated Medicare/Medicaid programs. Further, neither SSA nor the VR
system has experienced notable success in returning beneficiaries to
the labor force. The VR system, while accepting SSI/SSDI beneficiaries
for services at a proportionally higher rate than nonbeneficiaries,
typically has less success with this group, that is, relatively fewer
SSI/SSDI beneficiaries than nonbeneficiaries achieve an employment
outcome as a result of VR services.
One of the major changes in the employment sector over the past
three decades is the diversification of the laborforce. Workers with
disabilities are among the previously underrepresented groups entering
the labor market in increasing numbers with raised expectations and
legal protections for equal opportunity in employment. Even within the
disability community, there is great diversity in the subgroups who
have obtained or desire employment. It is very important that future
research and service programs demonstrate, in their design and
implementation, appropriate sensitivity to and adequate representation
of the range of cultural and disability subgroups. This issue should be
examined not merely as a response to the current consciousness about
multiculturalism but because the basic, implicit foundations of
vocational rehabilitation counseling were developed for a clientele
that, in terms of demographic characteristics, work-related experience,
and service needs, was quite different from today's rehabilitation
customers. Specifically, vocational rehabilitation techniques were
originally imported from the earlier established disciplines of
secondary vocational education and college counseling psychology.
Recipients of services from these disciplines tended to have mainstream
acculturation and tolerance for the competitive standards, verbal
testing, and guidance common in academic environments. Given the
cognitively compromised or socially disadvantaged status of many of
today's clients, additional scrutiny of the appropriateness and
adequacy of the strategies and tools for vocational rehabilitation
assessment, counseling, and training is imperative. Rehabilitation
counselors need new marketing strategies to reach out to prospective
employers to develop job opportunities for this diverse population of
persons with disabilities.
Community-Based Employment Services
NIDRR's research agenda concerning employment addresses, but is not
limited to, the State-Federal VR program administered by NIDRR's sister
agency, the Rehabilitation Services Administration (RSA). While the VR
[[Page 57200]]
program plays an important role, there is a wide range of other
Federal, State, and local funding sources for, and providers of,
employment programs. These include approximately 7,000 community-based
rehabilitation programs (CRPs), which serve about 800,000 persons
daily, and are funded by VR and/or such diverse sources as the Job
Training Partnership Act (JTPA), Worker's Compensation, or private
insurance. Legislation such as the Workforce Investment Act and the
Workforce Consolidation Act further diversifies the sources of support.
The role of community rehabilitation programs in the overall
service delivery system may be enhanced even further if Federal
employment programs devolve to States and communities and if the intent
to increase consumer choice in the selection of service providers
becomes more widely implemented. To respond to these developments,
community rehabilitation programs must be prepared to offer a full
range of vocational services to an increasingly heterogeneous consumer
population. Moreover, as return-to-work programs that base provider
payments on successful consumer outcomes are implemented, new
relationships between service providers and funding sources may emerge
over the next few years. These new relationships will require that
community rehabilitation programs adapt their current structure and
operations in significant ways.
A number of questions about how these changes may potentially
influence and impact the service delivery of community rehabilitation
programs are yet unanswered. For instance, the efficacy of different
models designed to maximize competitive employment outcomes for persons
with significant disabilities or with specific types of disabilities is
unknown. In addition, the impact of consumer choice on service delivery
models is unknown. Finally, whether new funding mechanisms will promote
increased competition and innovation in service delivery by community
rehabilitation programs is a major question. Gaining knowledge in these
important areas will allow validation of the assumptions upon which
pending reforms are predicated, and the shaping of the future direction
of initiatives to increase the numbers of persons with significant
disabilities who obtain and retain meaningful employment.
Employer Roles and Workplace Supports
Employers play a key role in deciding employment outcomes for
disabled persons through establishment of policies for recruitment,
screening, hiring, training, promoting, accommodating, and retaining
disabled individuals in the workforce. The provisions of Title I of the
ADA prohibit discrimination against qualified job applicants with
disabilities. Applicants are considered qualified if they can perform
the essential functions of a job with or without reasonable
accommodations. This statute creates duties for employers by requiring
them to make the employment process accessible, provide reasonable
accommodations, and focus on essential functions of jobs. These
employer responsibilities cover all aspects of the pre-employment and
post-employment phases. Through the requirements of Workers'
Compensation laws, bargaining unit agreements, and insurance
provisions, employers have additional obligations to employees who
become disabled.
Strategies to assist employers in meeting workplace obligations
include disability management and workplace supports. Disability
management is a term used to describe an array of support mechanisms
and benefits that employers use to maintain employment for disabled
workers. Workplace supports are programs or interventions provided in
the workplace to enable persons with disabilities to be successful in
securing and maintaining employment. Some workplace supports may be
provided through formal mechanisms established by vocational
rehabilitation programs, such as supported employment, in which a job
coach who works with the employee provides on-site assistance. Other
supports include accommodations such as job restructuring, worksite
adaptations, and improved accessibility.
Transition From School To Work
NIDRR, along with RSA, OSEP, and the Department of Education as a
whole, has a particular interest in the process by which disabled
students transition into a world of productive work, as opposed to
settling into a lifetime of dependency. This is a critical concern
because the transition period presents a distinct opportunity to help
students embark on a career, thus enhancing their community
integration, independence, and quality of life. The transition into
work occurs at many points: prevocational experiences, on-the-job
training, secondary vocational education or other secondary education
programs, and postsecondary education at technical institutions,
community colleges, or universities. These various transition points
present opportunities for research on strategies for success in
transferring from a learning environment to a work environment.
Research is ongoing regarding issues of postsecondary education for
persons with disabilities. This research shows that youth with
disabilities face tremendous difficulties in accessing postsecondary
education and making the transition from school to work. Most of the
nation's institutions of higher education offer support services to
students with disabilities; however, this is less certain for other
types of postsecondary schools. When offered, services vary widely and
may include customized academic accommodation, adaptive equipment, case
management and coordination, advocacy, and counseling. A number of
issues have been raised in relation to delivery of these services.
Among these are issues of disclosure, accessibility of a range of
services, and extent and type of transition services needed to move
from school to work.
Directions of Future Employment-Related Research
Given the magnitude of changes in the nature and structure of the
world of work and possible changes in the characteristics of the
disabled population, NIDRR's employment-related research agenda for the
next five years must extend beyond prior research efforts to discover
mechanisms that will make the labor market more amenable to full
employment for persons with disabilities. That research agenda must
incorporate economic research, service delivery research, and policy
research, and most importantly, must relate to the context in which
employment outcomes are determined. Among the key policy issues that
will affect the evolution of this agenda are SSA reform; restructured
funding and payment mechanisms, including the use of vouchers; the
impact of workforce consolidation; radical restructuring of employment
training services at State and local levels; employment-related needs
of unserved and underserved groups; linkage of health insurance
benefits to either jobs or benefit programs; and transition from school
to work among youth with disabilities.
An important focus for research will be changes in the environment
(e.g., in the workplace, information technology, and telecommunications
and transportation systems) that will make work more accessible, along
with strategies for assisting individuals to achieve both the skill
levels and the flexibility required for full labor force participation
in the 21st century. Finally, as a departure from NIDRR's historical
emphasis on the service
[[Page 57201]]
system and the quality of services, the agenda calls for examination of
economic issues (including benefits and costs of various incentive
plans) associated with employment of persons with disabilities, labor
force projections and analyses, and an increased understanding of
employer roles, perspectives, and motivational systems.
The purpose of NIDRR's research in the area of employment is to:
(1) Assess the impact of economic policy and labor market trends on
the employment outcomes of persons with disabilities;
(2) Improve the effectiveness of community-based employment service
programs;
(3) Improve the effectiveness of State employment service systems;
(4) Evaluate the contribution of employer practices and workplace
supports to the employment outcomes of persons with disabilities; and
(5) Improve school-to-work transition outcomes.
Research Priorities for Employment Economic Policy and Labor Market
Trends
As noted earlier in this chapter, NIDRR recognizes that the impact
of macroeconomic trends on employment of persons with disabilities, and
public policy responses to these trends is a large and complex topic,
one that will require increased policy research attention in the next 5
to 10 years. A coordinated research effort must examine such labor
market demand issues as the changing structure of the workforce, skill
requirements, and recruitment channels, in addition to issues on the
supply side such as job preparation and skills, competencies,
demographics, and incentives and disincentives to work. Specific
research priorities include:
(1) Analysis of the implications for employment outcomes of cross-
agency and multiagency developments and initiatives, including welfare
reform, workforce consolidation, SSA reform, Medicare/Medicaid changes,
The Department of Education-Department of Labor school-to-work program,
and Executive Order No. 13078 (1998);
(2) Analysis of the dissonance between the ADA concept of
``essential elements'' of a job and the new employer emphasis on core
competencies, flexibility, and work teams and the impact on job
acquisition and retention; and
(3) Analysis of the impact of labor market changes on employment of
persons with disabilities.
Community-Based Employment Service Programs
Proposed restructuring of the financing of employment-related
services for individuals with disabilities posits a major role for new
or different service delivery arrangements. The capacity of the
existing provider system, represented in part by the 7,000 community-
based rehabilitation programs (CRPs) in the nation, to assume this role
requires thorough investigation. Specific research priorities include:
(1) Evaluation of provisions for accountability and control and
protections for difficult-to-serve individuals; analysis of the cost
and benefit of services, and measurement of the quality of employment
outcomes for consumers with disabilities;
(2) Analysis of the extent to which services that CRPs deliver to
VR consumers (about one-third of services received by VR consumers come
from CRPs) differ in quality, quantity, costs, or outcomes from those
provided to consumers of other financing systems (e.g., Workers'
Compensation or private insurance); and
(3) Evaluation of the potential of this community-based employment
system to assume greater responsibility for service delivery under
block grants, in consolidation into umbrella agencies, and in ``one-
stop shop'' service configurations.
State Service Systems
Amendments to the Rehabilitation Act in 1992 and 1998 called for a
number of management and service delivery changes in the State-Federal
VR program. These include expanded consumer choice regarding vocational
goals, services, and service providers; implementation of performance
standards and indicators to ensure accountability and improvement in
the system; a greater role for consumer direction through the vehicle
of State Rehabilitation Advisory Councils; and changes in the
eligibility determination process that include presumptive eligibility
and order of selection procedures, among others. Order of selection
requires that individuals with the most significant disabilities
receive priority for services, significantly altering the
characteristics of VR clientele. Specific research priorities include:
(1) Analysis of the impact of management and service delivery
changes in the State-Federal VR program on the quality and outcomes of
VR services;
(2) Evaluation of the impact of professionalization of the
rehabilitation counselor workforce;
(3) Assessment of the efficacy of various methods of case
management;
(4) Development and evaluation of outcome measures for VR consumers
under one-stop configurations;
(5) Identification and evaluation of marketing strategies to assist
VR counselors in helping persons with disabilities obtain jobs in a
variety of employer settings;
(6) Assessment of interagency coordination in delivery of services
to multiagency consumers; and
(7) Assessment of the applicability of traditional VR approaches
for minority and new universe populations.
Employer and Workplace Issues
One area that has received insufficient attention in past research
is the workplace, including both the physical environment (as
represented by job site accommodations, technological aids, and the
like) and the ``social environment'' comprising roles of co-workers,
supervisors, and employers. Specific research priorities include:
(1) Investigation of employer hiring and promotion practices;
(2) Evaluation of models of collaboration between rehabilitation
professionals and employers;
(3) Development and evaluation of cost-effective strategies for
improving the receptivity of the workplace environment to workers with
disabilities;
(4) Development and evaluation of strategies for encouraging
employers to hire disabled workers (e.g., tax credits, arrangements
regarding partial support for medical benefits);
(5) Evaluation of the impact of new structures of work, including
telecommuting, flexible hours, and self-employment on employment
outcomes;
(6) Identification and evaluation of disability management
practices by which employers can assist workers who acquire, or
aggravate disabilities to remain employed, transfer employment, or
remain in the workforce and out of public benefit programs; and
(7) Analysis of the role and potential of the ADA in increasing job
opportunities.
School-to-Work Transition
Moving into employment from educational institutions is one of the
most important transitions that people make during their lifetimes. The
academic levels at which transitions to the labor market occur include
secondary school, secondary school completion, and completion of some
[[Page 57202]]
level of post-secondary education. In recent years, the U.S.
Departments of Education and Labor have collaborated to support the
development of state and local systems whose broad mission is to
prepare youth for success in the global marketplace. Specific research
priorities include:
(1) Determination of the impact of these state and local
educational system initiatives on work opportunities for the nation's
youth with disabilities;
(2) Evaluation of the extent to which school reform initiatives,
such as academic-vocational integration, Tech Prep, career academies,
work-based learning, and rigorous preparation in terms of critical
thinking and communication skills, are accessible to and effective with
youth who have disabilities;
(3) Identification of systemic and environmental barriers to full
labor force participation;
(4) Assessment of whether innovations in school-to-work practices
are accessible to youth with disabilities, and determination of the
impact of these practices on employment outcomes; and
(5) Assessment of the efficacy of employment and transition
services for youth from diverse backgrounds and new disability groups.
Future employment research will provide information to develop new
VR approaches for helping disabled individuals become competitive in
the changing, global labor market. These new methods will focus on
provision of culturally relevant services for clients, attainment of
competitive job skills by clients, and the application of accommodation
in the workplace.
Chapter 4: Health and Function
``To be healthy does not mean to be free of disease; it means that
you can function, do what you want to do, and become what you want to
become'' (Rene Jules Dubos, 1901-1982).
Overview
Maximizing health and function is critical to maintaining
independence for persons with disabilities. Health care for persons
with disabilities encompasses access to care for routine health
problems, participation in health promotion and wellness activities,
and access to appropriate specialty care, including medical
rehabilitation. Medical rehabilitation is the systematic application of
modalities, therapies, and techniques to restore, improve, or replace
impaired human functioning. It also encompasses biomedical engineering,
that is, the use of engineering principles and techniques and
biological knowledge to advance the functional ability of persons with
disabilities.
Health care and medical rehabilitation services operate largely
within the constraints imposed by market forces and government
regulations. In recent years, significant changes have occurred in
health care delivery and reimbursement. Various forms of managed care
have become the predominant mode of organizing and delivering health
care in much of the private sector. Medicaid and Medicare also have
adopted managed care strategies for providing health care to many
recipients. In theory, managed care uses case coordination to contain
costs by limiting access to ``unnecessary'' health care, particularly
specialty services and hospitalization. Individuals with disabilities
have expressed concern that managed care approaches may limit their
access to medical rehabilitation specialists, goods, and services. In
addition to a market-driven shift to managed care, other related
changes have occurred, including shortened length of stays in inpatient
rehabilitation facilities and the development of subacute
rehabilitation providers. Considerable consolidation also has occurred
within the medical rehabilitation industry and has further affected the
availability and delivery of services. There also has been a new
emphasis on developing performance measures that incorporate concepts
of quality, functional outcomes, and consumer satisfaction. These
measures are being used to guide purchasing and accrediting decisions
within the health care system.
During the next five years, NIDRR plans to fund research in a
number of broad areas that link health status and functional outcomes
to health care and medical rehabilitation. In addition, NIDRR will
support research to continue development of new treatments and delivery
mechanisms to meet the rehabilitation, functional restoration, and
health maintenance needs of individuals with disabilities. This
research will occur at the individual and the delivery system levels.
In this section, the discussion of general health care and medical
rehabilitation will address issues at both levels.
Health Care
The goal of health care for individuals with disabilities is
attaining and maintaining health and decreasing rates of occurrence of
secondary conditions of disability. Individuals with disabilities use
more health care services, accumulate more hospital days, and incur
higher per capita medical expenditures than do nondisabled persons.
Persons with no activity limitations reported approximately four
physician contacts per year; this figure was doubled for those who had
some activity limitation, was five times as high for those unable to
perform major life activities, and was seven times as great for those
needing help with instrumental activities of daily living (IADLs)
(LaPlante, 1993). Understanding the relationship between disability and
health has implications for the public health agenda and the
application of primary disease prevention strategies to the health of
persons with disabilities.
In the past, the health needs of persons with disabilities often
have been conflated with medical rehabilitation needs. The recognition
that persons with disabilities require routine health care or access to
health maintenance and wellness services is relatively new. How best to
meet these needs requires substantial new research. At the individual
level, persons with disabilities need providers and interventions that
focus on their overall health, taking disability and environmental
factors into consideration. Concern about the health of the whole
person is the focus at this level, in recognition that an individual is
more than a disability and deserves access to the health services
generally available to the nondisabled population. At the system level,
study of the organization and financing of health services must include
analysis of impacts on persons with disabilities. Ameliorating the
primary condition, preventing secondary conditions and co-morbidities,
maximizing independence and community integration, and examining the
impact of physical barriers and societal attitudes on access to health
and medical rehabilitation services are critical issues at each level
of focus.
Health Care at the Individual Level
Although persons with disabilities have higher health care
utilization rates than the general population, having a disability does
not mean that a person is ill. People with disabilities increasingly
are demanding information about and access to programs and services
aimed at promoting their overall health, including access to routine
health care, preventive care, and wellness activities. This includes
primary care and, for women, access to gynecological care. For
children, this means access to appropriate pediatric care. In clinical
settings, these demands require development of disability-sensitive
protocols for proper nutrition, exercise, health screening, and
[[Page 57203]]
treatment of nondisability-related illnesses and conditions. NIDRR is
committed to supporting research to improve the overall health of
persons with disabilities.
Health Care at the Systems Level
Persons with disabilities must have access to, and satisfaction
with, an integrated continuum of health care services, including
primary care and health maintenance services, specialty care, medical
rehabilitation, long-term care, and health promotion programs. Models
for organizing, delivering, and financing these services must
accommodate an overall health care system that is undergoing tremendous
change. Issues of gatekeeper roles, carve-outs, risk-adjusted rate-
setting, and service mix are factors for assessment in a context of
managed care approaches that balance care coordination with cost
control strategies. At issue for all people is whether cost control
strategies result in barriers to needed care; and, for persons with
disabilities, whether access to specialty care, particularly medical
rehabilitation services, is limited. In the current cost-cutting and
restrictive climate, it is important to assure that new service
configurations preserve equity for persons with disabilities by
providing for their unique needs.
Medical Rehabilitation
Medical rehabilitation addresses both the primary disability and
secondary conditions evolving from the initial impairment or
disability. Medical rehabilitation also teaches the individual to
overcome the barriers in the environment. Medical rehabilitation
includes medical and bioengineering interventions, therapeutic
modalities, and community and family interventions.
Medical Rehabilitation at the Individual Level
NIDRR-funded research has improved medical rehabilitation treatment
in areas such as spinal cord injury, traumatic brain injury, stroke,
and other leading causes of disability. This research must be expanded
to include emerging disabilities. Of special concern are new causes of
disability such as violence, which has emerged in recent years as a
significant precipitator for new disability conditions. In addition,
future medical rehabilitation research must be sensitive to cultural
difference and must recognize the impact of an individual's environment
on functional outcomes. Another important research focus will be
examining how technological improvements enhance the ability of
biomedical engineering to help people with disabilities regain,
maintain, or replace functional ability.
Additionally, an urgent need exists for the development of more
effective outcomes measurement tools to test the usefulness of new
medical rehabilitation interventions and products. These measurement
tools must assess the individual's response to medical rehabilitation
interventions and account for technology that enhances mobility,
independence, and quality of life. Outcomes must be measured not just
for the duration of treatment but also over the long term.
Another issue of continued importance to medical rehabilitation is
the prevention and treatment of secondary conditions. Secondary
conditions result directly from the primary disabling condition and may
have significant effects on the health and function of persons with
disabilities. Examples of secondary conditions may include depression,
bladder and skin problems, respiratory problems, contractures or
spasticity, fatigue, joint deterioration, or memory loss. Other health
conditions such as cardiac problems, autoimmune diseases, or cancer may
not always derive directly from the original disability, but may
require special preventive efforts or care interventions because of a
preexisting disability.
Medical Rehabilitation at the Systems Level
Cost containment strategies inherent in managed care may constrain
access to medical rehabilitation. Thus, it is more important than ever
to demonstrate the cost effectiveness of treatments. Research on
medical rehabilitation outcomes is critical to establishing the need
for, and assuring access to, medical rehabilitation within the health
care delivery system. Previously, NIDRR has initiated research
activities to develop methods for measuring function and assessing
rehabilitation outcomes, and for measuring the cost and effectiveness
of various rehabilitation modalities and delivery mechanisms. These
areas will continue to be important foci of NIDRR's future medical
research program. Research must continue to assess the impact of
changes at the system level on the rehabilitation outcomes of
individuals. In addition, providing care in nonacute settings requires
development of additional capacity that includes training practitioners
for more independent work in the community. NIDRR research must
contribute to building this new capacity.
The purpose of NIDRR's research in the area of health care and
medical rehabilitation is to:
(1) Identify and evaluate effective models of health care for
persons with disabilities;
(2) Develop models to promote health and wellness for persons with
disabilities;
(3) Examine the impact of changes in the health care delivery
system on access to care;
(4) Evaluate medical rehabilitation interventions that maximize
physical function for individuals with disabilities, taking into
account aging, environment, emerging disabilities, and changes in the
health services delivery system;
(5) Identify and evaluate medical rehabilitation interventions that
will help disabled individuals maintain health, through prevention and
amelioration of secondary conditions and co-morbidities, and through
education;
(6) Improve delivery of medical rehabilitation services to persons
with disabilities; and
(7) Evaluate the health and medical rehabilitation needs of persons
whose impairments are attributed to newly recognized causes or whose
conditions are newly recognized as disabilities, for example,
disability relating to acts of violence or to conditions of children
with chronic diseases like asthma.
Future Research Priorities for Health Care and Medical Rehabilitation
Research on Effective Methods of Providing a Continuum of Care,
Including Primary Care and Long-Term Care, to Persons With Disabilities
In recent years, a number of different models of providing routine
health care for persons with disabilities have emerged. For example,
there are medical rehabilitation programs that have developed primary
care clinics; and there are other programs where primary care providers
have added medical rehabilitation consultants to advise them on care of
persons with disabilities. The efficacy of these models is not yet
known, especially their impact on the overall well-being of their
consumers. There has been some research on long-term care models,
especially those that provide community-based services, including
personal assistance; however, research questions remain regarding
optimal models of long-term care. Specific priorities include:
(1) Identification of effective models of primary and long-term
care across disability populations including emerging disability
groups;
[[Page 57204]]
(2) Evaluation of the impact of primary and long-term care service
delivery models on independence, community integration, and overall
health outcomes, including occurrence of secondary conditions and co-
morbidities; and
(3) Collection and analysis of longitudinal data on health care
utilization by persons with disabilities, to identify trends, outcomes,
and consumer satisfaction.
Research on Application of Wellness and Health Promotion Strategies
NIDRR will support research to develop wellness and health
promotion strategies, incorporating all disability types and all age
groups. Specific research priorities include:
(1) Identification and evaluation of models to promote health and
wellness for persons with disabilities in mainstream settings where
possible. These will include nutrition, exercise, disease prevention,
and other health promotion strategies. A particular focus will be
placed on prevention and treatment of secondary conditions and on the
needs of emerging disability populations, including persons aging with
a disability;
(2) Evaluation of the impact of health status on independence,
community integration, quality of life, and health care expenditures;
and
(3) Development of guidelines that establish protocols for reaching
or maintaining appropriate levels of fitness for persons with varying
functional abilities.
Research on the Impact of the Evolving Health Service Delivery System
on Access to Health and Medical Rehabilitation Services
NIDRR anticipates that the health service delivery system will
continue to evolve as the marketplace responds to rising costs and as
policymakers respond to public concerns about access to care. Specific
research priorities include:
(1) Evaluation of the impact of changes at the health system level,
for example, financing and regulatory changes, on access to the
continuum of health care services, including medical rehabilitation;
and
(2) Evaluation of the impact of triage and case management
strategies on health status and rehabilitation outcomes.
Research on Trauma Rehabilitation
Research to improve the restoration and successful community living
of individuals with burns and neurotrauma such as spinal cord injury,
brain injury, and stroke, has long been an important component of
NIDRR's program. Specific research priorities include:
(1) Identification of methods to minimize neurological damage,
improve behavioral outcomes, and enhance cognitive abilities; and
(2) Identification of effective collaborative research
opportunities, using data generated by the model systems.
Research on Progressive and Degenerative Disease Rehabilitation
Research to maintain and restore function and independent
lifestyles for individuals with multiple sclerosis, arthritis, and
neuromuscular diseases is a key element of medical rehabilitation
research. Specific research priorities include:
(1) Identification and evaluation of methods to maintain function
for persons with these conditions;
(2) Identification of effective health promotion strategies;
(3) Evaluation of strategies to minimize the impact of secondary
conditions; and
(4) Development and evaluation of health care and rehabilitation
medicine supports to facilitate community integration and independent
living outcomes.
Research on Birth Anomalies and Sequelae of Diseases and Injuries
Medical and technological interventions to maintain and restore
function in persons with cerebral palsy, spina bifida, post-polio
syndrome, and other long-standing conditions are an important part of
rehabilitation. Specific research priorities include:
(1) Development and evaluation of physical therapy techniques,
respiratory management techniques, exercise regimens, and other
rehabilitative interventions aimed at maximizing functional
independence;
(2) Development and evaluation of supports to facilitate community
integration and independent living outcomes, and;
(3) Investigation of factors that lead to disability and loss of
full participation in society following disease or injury.
Research on Secondary Conditions
Prevention and treatment of secondary conditions are critical to
preserving health and containing health care costs of persons with
disabilities. Specific research priorities include:
(1) Development of clinical guidelines to identify at-risk
individuals and to involve consumers in regimens to prevent secondary
conditions;
(2) Identification and evaluation of methods of preventing and
treating secondary conditions across impairment categories; and
(3) Investigation of the interaction among secondary conditions,
impairments, and aging.
Research on Emergent Disabilities
Explorations of the impact of disabilities resulting from new
causes or expanding disability definitions will be of increasing
significance to rehabilitation medicine. Emergent conditions may
include such things as environmental illnesses, repetitive motion
syndromes, autoimmune deficiencies, and psychosocial and behavioral
conditions related to poverty and violence. Specific research
priorities include:
(1) Identification and evaluation of the need for health and
medical rehabilitation services to address emerging disability
conditions;
(2) Identification and evaluation of effective models by which
health and medical rehabilitation providers can meet the needs of
persons with emerging disabilities; and
(3) Development of models to predict future emerging disability
populations.
Research on Aging With a Disability
Advances in acute medical care for persons with disabilities means
that, as the population ages, many disabled persons will live longer
and may develop the serious, chronic conditions common to many aging
populations. Examples of these chronic conditions include heart
disease, diabetes, cancer, pulmonary diseases, arthritis, and sensory
losses. Specific research priorities include:
(1) Determination of the implications of aging with a disability on
access to routine health care, medical rehabilitation services, and
services that support community integration;
(2) Investigation of the impact of aging on disabilities and the
impact of various disabilities on the aging process;
(3) Investigation of the relationship between age-related
disability and employment; and
(4) Analysis of the effect of longer lifespan on the durability and
effectiveness of previously demonstrated interventions and
technologies.
Research on Rehabilitation Outcomes
NIDRR's prior research efforts have developed new rehabilitation
techniques for a number of disability groupings and also have developed
and tested comprehensive model systems, home and community-based
services,
[[Page 57205]]
and peer services to improve rehabilitation outcomes. With the renewed
emphasis on performance and outcomes and with increasing economic
constraints generated by changes in the health services delivery
system, rehabilitation medicine needs to document the impact of its
services. Specific research priorities include:
(1) Expansion of outcomes evaluation approaches, beyond short-term
rehabilitation studies, to include outpatient and long-term follow-up
information;
(2) Development of outcomes measures that include measures of
environmental barriers;
(3) Evaluation of methods that translate outcomes findings into
quality improvement strategies; and
(4) Analysis of barriers and incentives to consistent use of health
and medical rehabilitation outcomes measures in payer and consumer
choice models.
Research on Changes in the Medical Rehabilitation Industry
The medical rehabilitation industry is undergoing an unprecedented
level of consolidation, with unknown consequences for access and
flexibility. The industry has undergone significant changes in service
sites with the move from inpatient to post-acute, outpatient, and
community-based services. Outcomes measurement and quality assurance
initiatives are increasingly used in evaluating medical rehabilitation
services. Specific research priorities include:
(1) Investigation of the impact of financing and other market
forces on the medical rehabilitation industry, including service
delivery patterns and treatment modalities; and
(2) Identification and evaluation of the impact of changes at the
medical rehabilitation industry level on access and outcomes for
persons with disabilities.
A major research challenge will be to integrate research on the
efficacy of interventions to improve outcomes with research on the
impact of changes in the health care delivery system. A second
overarching objective will be to relate medical rehabilitation and
health care research to other changes, including the new paradigm of
disability, the emerging universe of disability, and participatory
research by persons with disabilities.
Chapter 5: Technology for Access and Function
``For Americans without disabilities, technology makes things
easier. For Americans with disabilities, technology makes things
possible'' (Mary Pat Radabaugh, 1988).
Overview
Technology has been defined as the system by which a society
provides its members with developments from science that have practical
use in everyday life. Today, technology plays a vital role in the lives
of millions of disabled and older Americans. Each day, people with
significant disabilities use the products of two generations of
research in rehabilitation and biomedical engineering to achieve and
maintain maximum physical function, to live in their own homes, to
study and learn, to attain gainful employment, and to participate in
and contribute to society in meaningful and resourceful ways. It is
more than coincidence that these remarkable advances have occurred
during the period in which Federal funds have supported research,
development, and training in rehabilitation and biomedical engineering.
In planning the future of rehabilitation engineering research,
NIDRR and its constituents in the consumer, service, research, and
business communities will continue to identify flexible strategies to
address emerging issues and technologies, to promote widespread use of
research findings, and to maximize the impact of NIDRR programs on the
lives of persons with disabilities. NIDRR is particularly well
positioned to continue its leadership in rehabilitation engineering
research, since NIDRR locates rehabilitation engineering research on a
continuum that includes related medical, clinical, and public policy
research; vocational rehabilitation and independent living research;
research training programs; service delivery infrastructure projects;
and extensive consumer participation.
The Institute supports engineering research on technology for
individuals and on systems technology. For example, NIDRR has supported
hearing aid and wheelchair research on the individual level, and
telecommunications, transportation, and built environment research at
the systems or public technology level. NIDRR also supports research on
ergonomics and other interface problems related to the compatibility of
various technologies, such as hearing aids and cellular telephones.
Technological innovations benefit the individual at the individual
level and at the systems level. At the individual level, assistive
technology enhances function and at the systems, or public technology
level, technology provides access that enhances community integration
and equal opportunity. Much of the assistive technology for disabled
individuals falls into the category of ``orphan'' technology because of
limited markets; frequently this technology is developed, produced, and
distributed by small businesses. Often, technology on the systems level
involves large markets and large businesses. Access to technology can
be increased by incorporating principles of universal design into the
built environment, information technology and telecommunications,
consumer products, and transportation.
Assistive Technology for Individuals
In 1990, more than 13.1 million Americans, about 5 percent of the
population, were using assistive technology devices to accommodate
physical impairments, and 7.1 million persons, nearly 3 percent of the
population, were living in homes specially adapted to accommodate
impairments. While the majority of persons who use assistive technology
are elderly, children and young adults use a significant proportion of
the devices, such as foot braces, artificial arms or hands, adapted
typewriters or computers, and leg braces (LaPlante, Hendershot, & Moss,
1992).
Assistive technology includes devices that are technologically
complex, involving sophisticated materials and requiring precise
operations--often referred to as ``high tech''--and those that are
simple, inexpensive, and made from easily available materials--commonly
referred to as ``low tech.'' Scientific research in both high tech and
low tech areas will serve the consumer need for practical items that
are readily available and easily used. Low-tech devices, for example,
are widely used by older persons with disabilities to compensate for
age-related functional losses. The importance of the development of
both types of assistive technologies is found in the words of one
engineer who stated, ``it is not high tech or low tech that is the
issue; it is the right tech.'' NIDRR research must be able to identify
the most appropriate technological approach for a given application,
and continue to develop low tech as well as high tech solutions.
Given the current trend toward more restrictive utilization of
health care funds in both public and private sectors, rehabilitation
engineering research must justify consumer or third party costs in
relation to the benefits generated for consumers. These benefits may be
in the form of long-term cost savings and consumer satisfaction.
Equally important, rehabilitation engineers must
[[Page 57206]]
develop products that are, in addition to being safe and durable,
marketable and affordable. End-product affordability is important not
only in meeting consumer needs but also in creating the market demand
that will encourage manufacturers to enter production.
Systems Technology: Universal Design and Accessibility
As disabled persons enter the mainstream of society, the range of
engineering research has broadened to encompass medical technology,
technology for increased function, technology that interfaces between
the individual and mainstream technology, and finally, public and
systems technology. Key concepts of universal design are
interchangeability, compatibility of components, modularity,
simplification, and accommodations of a broad range of human
performance capabilities. Universal design principles can be applied to
the built environment, information technology and telecommunications,
transportation, and consumer products. These technological systems are
basic to community integration, education, employment, health, and
economic development. The application of universal design principles
during the research and development stage would incorporate the widest
range of human performance into technological systems. Universal design
applications may result in the avoidance of costly retrofitting of
systems in use and possible reduction in need for orphan products.
Technology Transfer
The Institute's emphasis on applied research challenges NIDRR and
its researchers to find effective ways of ensuring technology
transfer--transfer of ideas, designs, prototypes, or products, from the
basic to the applied research environment, to the market, and to other
research endeavors. Market size, the potential for manufacturability,
intellectual property rights, patents, and regulatory approval are
considerations in the conceptualization and design phase of research
efforts. NIDRR-funded Rehabilitation Engineering Research Centers
(RERCs) consider potential industry partners in selecting research
projects that will result in marketable products.
Issues of orphan technology are key to the process of technology
transfer, with small markets that have limited capital occasioning the
need for subsidies, guaranteed financing for purchases, or other
incentives for producers. Future technology transfer efforts at NIDRR
will explore better linkages to the Small Business Innovative Research
(SBIR) program, a government-wide program intended to support small
business innovative research that results in commercial products or
services that benefit the public. Innovativeness and probability of
commercial success are both important factors in SBIR funding
decisions.
Building a Research Agenda
Future rehabilitation engineering research agendas must incorporate
several cross-cutting issues, including small markets, and outcomes
measures. In addition, research must continue to result in improvements
in the functional capacities of individuals with sensory, mobility, and
manipulation impairments. Telecommunications and computer access offer
significant potential to improve participation of persons with
disabilities in all facets of life. Continuous innovations in these
areas require that the needs of persons with various disabilities be
recognized and accommodated. Finally, access to the built-environment
remains a critical need for persons with disabilities, and thus
requires ongoing research.
The purpose of NIDRR's research in the area of technology is to:
(1) Develop assistive technology that supports persons with
disabilities to function and live independently;
(2) Develop biomedical engineering innovations to improve function
of persons with disabilities;
(3) Promote the concept and application of universal design;
(4) Ensure access of disabled persons to telecommunications and
information technology, including through the application of universal
design principles;
(5) Ensure the transfer of technological developments to other
research sectors, to production, and to the marketplace;
(6) Identify business incentives for manufacturers and
distributors;
(7) Remove barriers and improve access in the built environment;
(8) Identify the best methods of making technology accessible to
persons with disabilities;
(9) Develop rehabilitation engineering science, including a
theoretical framework to advance empirical research; and
(10) Raise the visibility of engineering and technological research
for persons with disabilities as a consideration in national science
and technology policy.
Future Research Priorities for Technology
NIDRR's research priorities in engineering and technology will help
improve functional outcomes and access to systems technology in the
areas of sensory function, mobility, manipulation, information
communication, and the built environment, and promote business
involvement and collaboration.
Research to Improve or Substitute for Sensory Functioning. Sensory
research is directed toward the problems faced by individuals who have
significant visual, hearing, or communication impairments. These major
conditions have been the focus of a long tradition of engineering
research emphasizing both expressive communication and the receipt of
information. Research priorities in the area of sensory functioning
will focus on enhancing hearing, addressing visual impairments, and
accommodating communication disorders. In the area of hearing
impairments, specific research priorities include:
(1) Development and evaluation of hearing aids that exploit the
potential of digital technology, use advanced signal processing
techniques to enhance speech intelligibility, attain a better fit, and
insure compatibility with telecommunications systems and information
technology;
(2) Evaluation of the application of digital processing techniques
to assistive listening systems;
(3) Evaluation of modern methods of sound recognition in alerting
devices; and
(4) Development of interfaces for assessment of automatic speech
recognition systems.
In the area of vision impairments, specific research priorities
include:
(1) Identification and evaluation of methods to enhance
accessibility of visual displays;
(2) Development and evaluation of graphical user interface
technologies for various document and graphic processing systems; and
(3) Improvement of signage in public facilities.
In the area of communication impairments, specific research
priorities include:
(1) Identification and evaluation of technologies to enhance the
communication abilities of persons who are deaf-blind; and
(2) Assessment of the capacity of research in cognitive science,
artificial intelligence, biomechanics, and human/computer interaction
to improve the rate, fluency, and use of communication aids.
Research To Enhance Mobility
Mobility research is directed toward the problems associated with
moving
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from place to place. Mobility can be enhanced by accessible public
transportation; modified privately owned vehicles; wheeled mobility
devices such as wheelchairs; orthoses, and prostheses; and barrier
removal. In the area of enhancing mobility, specific research
priorities include:
(1) Development, evaluation, and commercialization of wheelchair
designs that reduce user stress, repetitive motion injury, and other
secondary disabilities, while improving safety, ease of maintenance,
and affordability;
(2) Revision and dissemination of wheelchair standards;
(3) Development and evaluation of techniques to assist consumers
and providers in selecting and fitting wheelchairs and wheelchair
seating systems;
(4) Identification of a theoretical framework of gait and other
aspects of ambulation;
(5) Development and evaluation of advanced prosthetic and orthotic
devices, as well as footwear and other ambulation devices;
(6) Development and evaluation of methods to improve person-device
interfaces, post-surgical management and fitting, and materials used in
bio-engineering applications; and
(7) Development of devices to assist with ADLs for persons with
disabilities and their caregivers.
Research to Improve Manipulation Ability
The manipulation area includes research directed toward restoring
functional independence for persons with limited or no use of their
hands. This encompasses upper extremity prosthetic and orthotic
devices, and novel methods of upper extremity rehabilitation. Issues of
weight, durability, and reliability remain challenges in this field.
Repetitive motion injury is emerging as one of the most serious
problems among workers. While there have been a number of ergonomic
devices introduced to address this problem, the incidence of this
condition continues to increase. In the area of improvement of
manipulation, specific research priorities include:
(1) Identification of methods to improve the design of and achieve
multi-functional control for hand/arm prosthetic technology;
(2) Development and evaluation of surgical approaches that increase
functionality; and
(3) Development and evaluation of devices and techniques to
minimize the onset of repetitive motion injuries and to rehabilitate
those with the condition.
Research to Improve Accessibility of Telecommunications and Information
Technology
Computerized information kiosks, public web sites, electronic
building directories, transportation fare machines, ATMs, and
electronic stores are just some current examples of rapidly
proliferating systems that face people living in the modern world.
Research priorities will include development and evaluation of
techniques to make such computerized information systems accessible to
persons with a range of disabilities.
The information technology and telecommunications industry trend
away from standardized operating systems and monolithic applications
and toward net-based systems, applets, and object-oriented structures
has significant implications for accessibility for some persons with
disabilities. Maintaining accessibility to the Internet and World Wide
Web is also a formidable challenge facing individuals with disability.
Another concern in telecommunications is electromagnetic
interference from the rapidly proliferating wireless communication
systems (e.g., beepers, cellular telephones) and other electronic
devices using digital circuitry (e.g., computers, fluorescent light
controllers). This interference is complicating the use of assistive
listening devices. Moreover, interference caused by over-use of
spectrum is presenting problems in the use of FM Assistive Listening
systems.
During the past decade, virtual reality techniques, originally
developed by NASA and the military for simulation activities, have been