[Federal Register Volume 71, Number 31 (Wednesday, February 15, 2006)]
[Notices]
[Pages 8166-8200]
From the Federal Register Online via the Government Publishing Office [www.gpo.gov]
[FR Doc No: 06-1255]
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Part III
Department of Education
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National Institute on Disability and Rehabilitation Research--Notice of
Final Long-Range Plan for Fiscal Years 2005-2009
Federal Register / Vol. 71, No. 31 / Wednesday, February 15, 2006 /
Notices
[[Page 8166]]
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DEPARTMENT OF EDUCATION
National Institute on Disability and Rehabilitation Research--
Notice of Final Long-Range Plan for Fiscal Years 2005-2009
AGENCY: Office of Special Education and Rehabilitative Services,
Department of Education.
ACTION: Notice of Final Long-Range Plan for Fiscal Years (FY) 2005-
2009.
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SUMMARY: The Assistant Secretary for Special Education and
Rehabilitative Services (OSERS) publishes the Final Long-Range Plan
(Final Plan) for the National Institute on Disability and
Rehabilitation Research (NIDRR) for FY 2005 through 2009. As required
by the Rehabilitation Act of 1973, as amended (Act), the Assistant
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: Effective Date:
The Final Plan is effective March 17, 2006.
FOR FURTHER INFORMATION CONTACT: Donna Nangle, U.S. Department of
Education, 400 Maryland Avenue, SW., room 6030, Potomac Center Plaza,
Washington, DC 20204-2700. Telephone: (202) 245-7462.
If you use a telecommunications device for the deaf (TDD), you may
call the Federal Relay Service (FRS) at 1-800-877-8339 between 8 a.m.
and 4 p.m., Eastern time, Monday through Friday.
Individuals with disabilities may obtain this document in an
alternative format (e.g., Braille, large print, audiotape, or computer
diskette) on request to the contact person listed in this section.
SUPPLEMENTARY INFORMATION:
Background
The Final Plan presents a five-year research agenda anchored in
legislative mandate, consumer goals, and scientific initiatives. The
Final Plan has several distinct purposes:
(1) To set broad general directions that will guide NIDRR's
policies and use of resources.
(2) To establish objectives for research and related activities
from which annual research priorities can be formulated.
(3) To describe a system for operationalizing the Final Plan in
terms of annual priorities, evaluation of the implementation of the
Final Plan, and updates of the Final Plan as necessary.
(4) To direct new emphasis to the management and administration of
the research endeavor.
The Final 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 the U.S. Department of
Health and Human Services.
The authority for the Secretary to prepare the Final Plan is
contained in section 202(h) of the Act (29 U.S.C. 762(h)). NIDRR
published a Notice of Proposed Long-Range Plan for FY 2005-2009
(Proposed Plan) on July 27, 2005 (70 FR 43522). The Act requires that
NIDRR consider all public comments received regarding the Proposed Plan
and then transmit the Final Plan to Congress.
The Final Plan is published as an attachment to this notice.
Public Comments
In response to the invitation in the Notice of Proposed Long-Range
Plan for FY 2005-2009, NIDRR received 45 comments regarding the
Proposed Plan. The majority of the comments were positive and
supportive of the Proposed Plan. Comments that suggested changes in the
Proposed Plan generally fell into one of two categories. One small
group of comments suggested changes to the Proposed Plan that NIDRR
does not have the authority to make (e.g., requests to increase funding
for NIDRR) or that would result in NIDRR not complying with the Act
(e.g., changes to the mandatory set-aside requirements for minority
institutions). NIDRR is unable to make these changes.
Another group of comments requested that NIDRR include more
references to specific target populations, disability groups, and
therapeutic modalities in the Proposed Plan. NIDRR believes that it is
unnecessary to make any changes to the Proposed Plan based on these
comments because the long-range plan is a strategic plan designed to
provide a broad framework for funding research that is consistent with
NIDRR's mission, including research that both addresses specific target
populations (as defined in 34 CFR Sec. 350.5) and relates to the
outcomes described in NIDRR's Logic Model, as presented in the Proposed
Plan.
While the Proposed Plan is organized along domains of research
(i.e., employment, health and function, technology for access and
function, participation and community living, and disability
demographics) for the sake of manageability, it also makes clear that
disability is a holistic phenomenon that involves many overlapping and
cross-domain issues. For example, through the Field-Initiated (FI)
Program, which covers all aspects of NIDRR's research domains and
addresses all disability populations with a wide range of research
approaches, NIDRR encourages applications that address overlapping and
cross-domain issues for any relevant populations. In addition, with
respect to those programs for which NIDRR establishes annual
priorities--Rehabilitation Research and Training Centers (RRTCs),
Rehabilitation Engineering Research Centers (RERCs), and Disability and
Rehabilitation Research Projects (DRRPs)--NIDRR may require applicants
to focus on one or more target populations or issues that cut across
domains. Increasingly, NIDRR is asking for cross-disability and
multidisciplinary research. For example, NIDRR could establish a
research priority in the employment domain that requires applicants to
focus on persons with intellectual disabilities and issues related to
technology. Given the structure of NIDRR's research programs,
therefore, NIDRR believes that the concerns of commenters who seek more
attention on specific target populations, disability groups, or
therapeutic modalities can be accommodated within the framework of the
Proposed Plan.
Changes to Proposed Plan
Following publication of the Proposed Plan, NIDRR realized that it
inadvertently had failed to discuss in the Proposed Plan the Disability
and Business Technical Assistance Centers (DBTACs) that it supports
under its DRRP program and its work on coordinating the Federal
response to emergency preparedness and disability based on Executive
Order 13347, Individuals with Disabilities in Emergency Preparedness.
Commenters also noted the absence of this information in the Proposed
Plan. Accordingly, NIDRR has made changes to the Proposed Plan as
follows:
DBTAC
The Proposed Plan did not include references to NIDRR's ongoing
DBTAC program, which is NIDRR's program for facilitating implementation
of the Americans with Disabilities Act of 1990 (ADA). The following
language, therefore, has been added as the third paragraph under the
heading Future Agenda in the section entitled Knowledge Translation:
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``Knowledge Translation includes the provision of information,
technical assistance, and training in areas related to disability
policy. The Act assigns to NIDRR the responsibility for those
activities in relation to the ADA. NIDRR intends to implement those
activities through a national network of regionally-based centers
that will provide assistance to disability organizations,
individuals with disabilities, businesses, public agencies, and the
general public, and that will contribute to research on topics
covered under the ADA.''
Individuals With Disabilities in Emergency Preparedness
In recognition of NIDRR's ongoing work in the area of emergency
preparedness for individuals with disabilities, NIDRR has made the
following changes to the Proposed Plan:
Under the heading National Policy Context for NIDRR Research in
Part A: Introduction and Background Introduction, we have revised the
second sentence to reference Executive Order 13347, Individuals with
Disabilities in Emergency Preparedness, such that the sentence now
reads as follows: ``These include the U.S. Supreme Court's 1999
decision in Olmstead v. L.C. (527 U.S. 581), the President's New
Freedom Initiative (NFI), the report of the President's New Freedom
Commission On Mental Health, and Executive Order 13347, Individuals
with Disabilities in Emergency Preparedness.'' In addition, at the end
of the National Policy Context for NIDRR Research section, NIDRR has
added the following language:
``On July 26, 2004, President George W. Bush issued Executive
Order 13347, `Individuals with Disabilities in Emergency
Preparedness'. This Order establishes a policy that the Federal
government appropriately support the safety and security of
individuals with disabilities in situations involving both natural
and man-made disasters. The Order directs Executive departments and
other Federal agencies to include individuals with disabilities in
emergency preparedness planning. Also included in the Order was the
establishment of an Interagency Coordinating Council (ICC) to
coordinate the Federal response to emergency preparedness and
disability. The ICC established a research committee, which was co-
chaired by NIDRR staff. The ICC concluded, and reported to the
President, that it is critical to transition from suggestions and
ideas to empirically-based research that provides evidence of what
works.''
In addition to the few changes identified in the preceding
paragraphs, the Final Plan reflects a number of additional non-
substantive and clarifying revisions.
NIDRR appreciates the many thoughtful comments it received
regarding the Proposed Plan, and will continue to consider them in
updates to the Final Plan and in future priorities.
Electronic Access to This Document
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Dated: February 7, 2006.
John H. Hager,
Assistant Secretary for Special Education and Rehabilitative Services.
National Institute on Disability and Rehabilitation Research: Long-
Range Plan for 2005-2009
Preface
The introductory section of the National Institute on Disability
and Rehabilitation Research (NIDRR) Long-Range Plan 2005-009 (Plan)
provides basic background about NIDRR. This includes its mission, its
administrative location, the legislative and administrative
environments in which NIDRR operates, intended beneficiaries of NIDRR
research, conceptual overview of the Plan, management and evaluation
principles, general highlights of 25 years of NIDRR research, and the
structure of the Plan. The first section of the Plan also includes a
chapter that defines and describes NIDRR's target population, providing
some data on population characteristics. The second section of the Plan
presents NIDRR's Logic Model and research domains, and operational
strategies to implement the Plan and enhance the accountability and
responsiveness of NIDRR. The third section of the Plan delineates each
domain of NIDRR research and related activities and the strategies that
will be employed to address NIDRR's mission.
Part A: Introduction and Background
I. Introduction
The mission of the National Institute on Disability and
Rehabilitation Research (NIDRR or the Institute) is to generate new
knowledge and promote its effective use to improve the abilities of
people with disabilities to perform activities of their choice in the
community, and also to expand society's capacity to provide full
opportunities and accommodations for its citizens with disabilities.
The timely convergence of technological breakthroughs and
empowerment of people with disabilities has resulted in increased
demand for the products of disability and rehabilitation research.
These include not only technological devices but also new knowledge
about interventions and policies that will further the mission of NIDRR
to advance all aspects of life for people with disabilities.
Organizational Context
NIDRR is located within the Office of Special Education and
Rehabilitative Services (OSERS) at the U.S. Department of Education
(Department). OSERS has two other components: The Rehabilitation
Services Administration (RSA), which administers the State-Federal
Vocational Rehabilitation Program, and the Office of Special Education
Programs (OSEP), which oversees the implementation of the Individuals
with Disabilities Education Act, as amended (IDEA). NIDRR, therefore,
is ideally situated to facilitate the transfer of knowledge to
consumers, practitioners, and administrators in vocational
rehabilitation and special education. NIDRR also has developed
extensive linkages to the broader disability and rehabilitation
research community through its leadership work chairing the Interagency
Committee on Disability Research (ICDR) and through development of
significant partnerships with many Federal agencies, research
institutions, and consumer organizations. NIDRR values and encourages
the collaborative and synergistic nature of its many partnerships, as
significant advancements in disability knowledge are achieved through
the efforts of many researchers and others over time.
Statutory Mandates
The 1978 amendments to the Rehabilitation Act of 1973, as amended,
(the Act) created NIDRR \1\ in recognition of both the opportunities
for scientific and technological advancements to
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improve the lives of people with disabilities and the need for a
comprehensive and coordinated approach to research, development,
demonstration, and information dissemination and training. These
amendments charged NIDRR with providing a comprehensive and coordinated
program of research and related activities designed to maximize the
inclusion and social integration, health and function, employment and
independent living of individuals of all ages with disabilities.
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\1\ Established as the National Institute on Handicapped
Research (NIHR) in the 1978 amendments, the Institute's name was
changed to the National Institute on Disability and Rehabilitation
Research (NIDRR) by the 1986 amendments to the Rehabilitation Act of
1973, as amended.
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In addition to research and development (R&D), the Act authorizes
widespread dissemination of research-generated knowledge to
rehabilitation service providers, people with disabilities and their
families, researchers, and others; promotion of technology transfer;
leadership of an Interagency Committee to coordinate Federal disability
and rehabilitation research; advanced training in disability and
rehabilitation research; and increased opportunities for minority
institutions and researchers with disabilities or from minority groups.
To guide rehabilitation research, the Act requires publication of
the proposed Plan in the Federal Register, public comment on the Plan,
and subsequent production of a final Plan. The Act specifies that in
developing and implementing the Plan, NIDRR should: outline priorities
for NIDRR's activities and provide the basis for such priorities;
specify appropriate goals and timetables for covered activities to be
conducted under sections 202 and 204 of title II of the Act; develop
the Plan in consultation with the Commissioner of RSA, the Commissioner
of the Administration on Developmental Disabilities, the National
Council on Disability (NCD), and the ICDR; and provide full
consideration to the input of people with disabilities and their family
members, organizations representing people with disabilities,
researchers, service providers, and other appropriate entities. The
Plan also must provide for widespread dissemination of the results of
funded activities, in accessible formats, to rehabilitation
practitioners and individuals with disabilities and their families,
including those who are members of minority groups or underserved
populations.
This final Plan was developed by NIDRR with extensive input from an
expert panel of researchers, service providers, and people with
disabilities. Appendix 1 of this Plan contains a list of the expert
panel members. In addition, NIDRR actively solicited comments through a
Web site and through six national videoconferences. NIDRR also
consulted with the ICDR, the NCD, and other Federal partners.
National Policy Context for NIDRR Research
In recent years, several major policy directives have influenced
activities and initiatives in disability and rehabilitation research,
including implementation of the 1999-2003 NIDRR Long-Range Plan and
development of the proposed Plan. These include the U.S. Supreme
Court's 1999 decision in Olmstead v. L.C. (527 U.S. 581), the
President's New Freedom Initiative (NFI), the report of the President's
New Freedom Commission On Mental Health, and Executive Order 13347,
Individuals with Disabilities in Emergency Preparedness. The Americans
with Disabilities Act of 1990 (ADA), now in existence for more than a
decade, has continued to provide a strong framework for all disability-
related activities.
Because maximum community participation for persons with
disabilities is the ultimate objective of NIDRR research, the important
directives in the Olmstead decision resonate with and inform NIDRR's
agenda. The Olmstead decision stated that Title II of the ADA requires
public agencies that provide services to people with disabilities do so
in the most integrated settings appropriate to their needs. Moreover,
State agencies that provide housing and services must make plans to
move individuals from institutions to community environments and to
divert others from institutionalization when appropriate. The Olmstead
decision allows State agencies to take into consideration limited
available funds, but does require that they show progress through
planning for the implementation of change. Full implementation of this
decision eventually will have far-reaching consequences for people with
disabilities and the service systems they use.
The Olmstead decision affects disability and rehabilitation
research as it highlights the need for new, validated strategies; and
supports programs, interventions, guidelines, and policies to make
living in the community successful for deinstitutionalized individuals
or those diverted from potential institutionalization. Individual
States are serving as de facto laboratories for research into social
policy implementation, and generate a need and an opportunity for the
evaluation of best practices. NIDRR will continue its focus on research
that addresses effective use of information for people with
disabilities and access to appropriate accommodations in society; both
are essential components of the Institute's research agenda.
The NFI was announced by President George W. Bush on February 1,
2001, to further the full participation of people with disabilities in
all areas of society by increasing access to assistive and universally
designed technologies, by expanding educational and employment
opportunities, and by promoting full access to community life. Several
provisions of the NFI have had a direct impact on NIDRR activities. The
NFI included a proposal to increase funding for NIDRR's Rehabilitation
Engineering Research Centers (RERCs). Substantial funding was earmarked
for the ICDR, which is chaired and staffed by NIDRR, in order to
increase coordination of Federal research efforts related to technology
and disability. Other aspects of the NFI, such as increased
preparedness and more opportunities for employment, telework, universal
design, access to assistive technology, increased homeownership, and
access to mental health services, also influenced NIDRR's activities
and research during much of the preceding four years.
The President's New Freedom Commission on Mental Health
(Commission), established through Executive Order 13263 on April 29,
2002, examined the mental healthcare system in the Nation and issued
recommendations for change. In July 2003, the Commission issued its
final report, ``Achieving the Promise: Transforming Mental Health Care
in America.'' The report identified barriers to care within the mental
health system and provided examples of community-based care models that
have worked successfully to coordinate and provide treatment services.
The Commission concluded that the mental health service delivery system
in the United States is fragmented and should be substantively
transformed. Goals for the transformed system include ensuring that:
(1) Americans understand that mental health is essential to overall
health; (2) Mental healthcare is consumer and family-driven; (3)
Disparities in mental health services are eliminated; (4) Early mental
health screening, assessment, and referral to services are common
practice; (5) Excellent mental health services are delivered and
research is accelerated; and (6) Technology is used to access mental
healthcare and information.
The realization of these goals will require the development and
transfer of new knowledge about barriers to recovery and community
integration, effective treatment interventions and
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supports, best practices in services delivery and increasing access to
care, technology to support living independently in the community, and
accommodations to promote employment. The Commission's final report
contains substantial implications for NIDRR's research agenda, as well
as those of its Federal partner agencies.
On July 26, 2004, President George W. Bush issued Executive Order
13347, ``Individuals with Disabilities in Emergency Preparedness.''
This Order establishes a policy that the Federal government
appropriately support the safety and security of individuals with
disabilities in situations involving both natural and man-made
disasters. The Order directs Executive departments and other Federal
agencies to include individuals with disabilities in emergency
preparedness planning. Also included in the Order was the establishment
of an Interagency Coordinating Council (ICC) to coordinate the Federal
response to emergency preparedness and disability. The ICC established
a research committee, which was co-chaired by NIDRR staff. The ICC
concluded, and reported to the President, that it is critical to
transition from suggestions and ideas to empirically-based research
that provides evidence of what works.
Overview of Long-Range Plan Concepts
The proposed Plan builds on the work of the 1999-2003 Long-Range
Plan, while responding to new developments in the disability and
rehabilitation research field and in government. Both plans stress the
importance of NIDRR's significant role as a research institute in the
public interest, carrying out scientific research to meet the diverse
needs of people with disabilities.
The contextual paradigm of disability and rehabilitation research
will continue to frame the NIDRR research agenda. This paradigm
overcomes the limitations imposed by a medical model of disability. The
new paradigm of disability maintains that ``disability is a product of
the interaction between characteristics of the individual (e.g.,
conditions or impairments, functional status, or personal and social
qualities) and the characteristics of the natural, built, cultural, and
social environments.'' (NIDRR Long-Range Plan 1999-2003).
The contextual paradigm of disability was explicated in the 1999-
2003 NIDRR Long-Range Plan and significantly influenced the design of
NIDRR research during the past five years. The contextual paradigm of
disability helps to focus NIDRR research on new research issues; new
approaches for defining, measuring, counting, and categorizing
disability; and new methods for conducting and managing research.
Definitions and enumeration of disability are addressed in the
subsequent chapter on the characteristics of the target population and
in the demographics research chapter. New approaches to measurement
issues and research methods will be addressed in each of the chapters
on research domains (e.g., participation and community living, health
and function, technology for access and function, employment, and
demographics), as will new research methods. New research issues will
be discussed in the individual chapters on research domains.
The Plan continues the important research areas of universal design
and the emerging universe of disability. The new Plan further
recognizes the importance of interdependence, not only in its continued
emphasis on personal assistance services, but also on supports for
family and other informal caregivers, direct care workers, and
paraprofessionals in facilitating community living and participation in
the community.
The Plan expands NIDRR's emphasis on the major research ``domains''
of employment, participation and community life, health and function,
and technology for access and function. In these areas, the Plan
continues to emphasize areas of employment incentives and
accommodations, access to healthcare, and the preference for supports
rather than services as the model for facilitating the community
integration of people with disabilities. The previously termed domain
of independent living and community integration in the 1999-2003 Long-
Range Plan has been renamed participation and community living to
better capture the broad goal of increased participation, which is
intrinsic to the NIDRR mission. Additionally, the area of disability
demographics has been elevated to a major domain. This change
recognizes and reinforces the importance of improved disability data
for policy, design of services, and future research initiatives.
The Plan also embraces the concept of disability as a holistic
phenomenon by extending this concept into the research field. This is
achieved by emphasizing interactions between two or more domains, thus
indicating and stressing the important interrelationships among the
research domains throughout the Plan.
Accountability, Management, and Evaluation of Research
The Plan introduces major changes in accountability, management,
and evaluation of the research portfolio, some of which reflect new
standards of accountability for NIDRR as an entity, while others relate
to the performance of grantees.
In 1993, Congress passed the Government Performance and Results Act
(GPRA), intended to improve accountability of Federal programs through
strategic planning and performance assessment. GPRA requires Federal
agencies to develop strategic plans for all programs, identifying
performance goals and the indicators that would be used to measure
progress. In 2002, the President's Management Agenda was announced,
emphasizing the use of objective criteria to assess program results for
budgeting purposes. The Office of Management and Budget (OMB) developed
the Program Assessment Rating Tool (PART) to assess each program's
performance. Government-wide policy shifts have resulted in changes in
NIDRR management procedures to emphasize standards for assessing its
work and that of its grantees. NIDRR has developed its response to the
PART document by using a logic model, as presented in the next part of
the Plan.
While NIDRR will continue to emphasize the same or similar research
areas as those delineated in the 1999-2003 Long-Range Plan (i.e.,
employment, health and function, technology for access and function,
participation and community living, and disability demographics, which
are termed domains in this Plan), there will be new emphases on stages
of knowledge development. These stages relate to the types of
objectives and end products that grantees are expected to pursue. These
stages include: (1) Discoveries; (2) theories, measures, and methods;
and (3) interventions, products or devices, and environmental
adaptations.
In program reviews and other evaluations, NIDRR has found that
disability and rehabilitation research often lacks validated theories
and measures. The degree of deficit varies from one domain to another,
and within domains, in relation to certain disability types or other
target populations. Equally important is the tendency to sometimes
reinvent data collection instruments for each individual study, rather
than create a more robust knowledge base by using instruments that
already are validated. Validated measurement tools are critical to
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evaluating research outcomes, and for determining which research
findings are appropriate for dissemination to various constituents.
Research projects at the second stage of knowledge development will
develop and test the validity of theories, measures, and methods as
applied to disability research.
The focus on research stages of knowledge development will enable
NIDRR to set more measurable goals and to assess the extent to which
grantees have produced relevant outputs and outcomes. For example,
whether a particular research topic is appropriate for the
interventions, products, and environmental adaptations stage will be an
important judgment, and one that NIDRR generally will announce with a
published priority. In this third stage of knowledge development,
researchers will test the effectiveness of specific interventions or
program configurations.
Accomplishments of NIDRR Researchers
NIDRR researchers and representatives of the disability community
generally attribute two categories of accomplishments to NIDRR. The
first category includes NIDRR leadership in important areas, pioneering
inquiries, and general principles. The second category consists of the
work of NIDRR-supported grantees in enhancing the knowledge base and
disseminating new findings. The two categories are often complementary
and interdependent. The Institute has reached its 25th Anniversary, and
a backward glance will highlight some important NIDRR achievements.
The need to examine the many dimensions of the new paradigm of
disability, also referred to as the contextual paradigm of disability,
provided the catalyst for an innovative collaboration between NIDRR and
the American Psychological Association (APA). The Bridging Gaps
research conference examined the impact of the paradigm shift on
psychology and rehabilitation research. One presenter at the Bridging
Gaps conference described the significant effects of the paradigm
shift:
NIDRR's new paradigm for conceptualizing disability is a powerful
tool for focusing both research and service delivery systems on
interactions that can significantly affect outcomes for persons with
disability. If we are trying to understand outcomes through research or
attempting to influence outcomes by direct intervention, or both, it is
critical to understand and apply this paradigm by paying increased
attention to the person-environment interactions. As with any good
theory, this one illuminates aspects that were in the dark under the
older paradigm and suggests ways of thinking that were not intuitively
obvious.\2\
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\2\ Nirenberg, B., ``A system for bridging the financial and
cultural gaps in the well-being of persons with disabilities'', in
Bridging gaps: Refining the disability research agenda for
rehabilitation and the social sciences--Conference proceedings.
Menomonie: University of Wisconsin-Stout, Stout Vocational
Rehabilitation Institute, Research and Training Centers, edited by
F.E. Menz and D.F. Thomas, 2003, p. 239 (http://www.rtc.uwstout.edu/pubs/pubs.htm).
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Related to the new paradigm are several new directions in research
that also have served to lead the field. Among the research issues are
universal design, the concept of an emerging universe of disability,
and emphasis on accommodations. NIDRR has been a leading international
proponent of universal design, which is defined as design for a built
environment that can be used by nearly all people--living, working, and
playing together. Rather than using design parameters based on
idealized measures of human factors that restrict usability to a narrow
segment of the population, universal design works to accommodate a
wider range of functional abilities through approaches including
modular designs that easily can be modified.
The emerging universe of disability refers to a disabled population
that is shaped by demographic changes in age, immigrant status, and
other socioeconomic factors, by new types of potentially disabling
conditions, by consequences of treatments of existing conditions, and
by differential distribution of conditions and their consequences. The
concept of an emerging universe of disability has helped to increase
attention in the last five years to the unique needs of this
population, and to multiply the research endeavors focusing on cultural
and economic factors affecting disability.
NIDRR has pursued a model for addressing obstacles facing people
with disabilities that have shifted from service provision to supports
that enable self-direction. Supports may include personal assistance
services (PAS), assistive technology, civil rights, and peer support,
and involving people with disabilities in the conduct and
administration of disability and rehabilitation research. Promoting
accommodations and assistive technology have been two areas of NIDRR
leadership that are reflected in new public policy, including in the
ADA and the NFI. Accommodations may be physical, technological or
programmatic, and entitlement to accommodations is a cornerstone of the
ADA. Accommodations are particularly important in supporting work and
education. NIDRR researchers have developed assistive technology
devices addressing information technology (IT), communications and
speech, and neurological, mobility, and manipulation issues, among
other functional areas. Accommodations also encompass changes in
program operations to enable people with disabilities to participate
fully; these changes may include times and locations, structure of
activities, and accessibility.
NIDRR has sponsored research on supports that help individuals with
disabilities make their own choices and direct their own lives.
Supports include peer-to-peer and family-to-family programs, PAS, self-
advocacy skill development, consumer direction, assistive technology,
and environmental modifications, all which have been subjects of
considerable NIDRR research.
In 1982, NIDRR convened the first meeting of the member agencies of
what is now known as the Interagency Subcommittee on Disability
Statistics (ISDS), to coordinate and promote the generation of improved
statistical knowledge about disability populations. This committee has
met monthly for 20 years. The ISDS achievements include: collaborating
to publish a book on statistics of disability populations (Thompson-
Hoffman, S. Fitzgerald Storck, I. (Eds.), Disability in the United
States: a Portrait from National Data (1991); and serving as a
consultation and review resource for other public and private agencies
designing surveys of individuals with disabilities. The ISDS also has
facilitated a substantial amount of sharing and exchange of information
among member agencies, and joint funding of projects among these
agencies.
Structure of the Plan
The Plan is divided into three parts. Part A includes this
introduction and a chapter on NIDRR's target population. NIDRR has, by
law, a number of target populations, including people with disabilities
and their families; individuals who provide vocational rehabilitation,
or medical, technological, and direct support services; educators;
policymakers; businesses; and the general public. However, people with
disabilities clearly are intended to be the ultimate beneficiaries of
all NIDRR activities, and the next chapter focuses on defining and
describing that population.
Part B (Managing for Success) addresses accountability, management,
and evaluation through the use of a
[[Page 8171]]
logic model and a strategy of ``managing for results.'' The NIDRR Logic
Model provides a theoretical base for the evaluation of program
outcomes, and will serve to ensure consistency throughout a planning
and feedback cycle. In ``managing for results,'' NIDRR presents its
strategy for making its operations more systematic and responsive to
the concerns of all its constituents. The management chapter focuses on
setting regular, fixed dates for the steps of annual grants
competitions--announcement of priorities and closing dates, peer
reviews, and grant award announcements--and establishing standing
panels for consistency and expertise in peer review. Additionally,
NIDRR will focus on setting priorities that encourage greater leeway
for applicants in designing research. NIDRR will be enhancing its
monitoring and evaluation processes to provide continuous feedback to
improve its research portfolio.
Part C discusses three arenas of outcomes achievement: research and
development (R&D), capacity building (C-B), and knowledge translation
(KT). The R&D arena is divided according to the domains of NIDRR
research--employment; health and function; technology for access and
function; participation and community living; and disability
demographics.
Each domain of the R&D arena may include a discussion of one or
more of the identified stages of knowledge development which include:
discoveries; theories, measures and methods; and interventions,
products and devices, and environmental adaptations. Under each of
these domains, NIDRR will develop a set of implementation strategies
that will identify potential research that could address the
anticipated outcomes in the given domain. NIDRR will publish these
implementation strategies as proposed priorities and, following public
comment, final priorities annually, on a combined basis.
In the arena of capacity building (C-B), NIDRR has focused its
efforts on the personal and professional development of scientists,
advocates, and people with disabilities, and is expanding this approach
to include development of the capacity of institutions and
organizations, especially those that address the needs of underserved
populations.
The Knowledge Translation (KT) chapter discusses the arena of KT
and introduces reforms in NIDRR's current knowledge dissemination
program. The new approach to KT features a process for assessing the
scientific validity of findings to be transferred, using consortia and
other external organizations for evaluation.
Appendix 1 to this Plan lists the NIDRR 2005-2009 Long-Range Plan
expert panel members.
II. The Target Population: Definitions and Characteristics
Definitions of Disability
The ICDR, based on a survey of publicly available documents,
identified more than 60 definitions of disability in the Federal
government alone, generally related to eligibility requirements for
benefits or services, but also reflected in major national surveys that
determine the Nation's estimates of disability. NIDRR is governed by
the definitions in Title II of the Act. The definition that applies to
Title II describes a person with a disability as: ``any person who (i)
Has a physical or mental impairment which substantially limits one or
more 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).
NIDRR is required to focus especially on experiences of individuals
with the most significant disabilities. The Act defines an individual
with a significant disability in functional terms, the resulting need
for multiple vocational rehabilitation services over an extended period
of time, and indicates that the definition includes, but is not limited
to, a list of specific conditions (29 U.S.C.705). Multiple services
over an extended period of time include accommodations needed during
the rehabilitation process and/or during subsequent employment. Under
this definition of an individual with a significant disability, NIDRR
is concerned with finding research solutions for people with all types
of disabilities--mobility and manipulation, sensory, cognitive, and
emotional. The target population includes individuals of all ages.
Section 21 of the Act requires specific attention to underserved
populations, those individuals with disabilities who are additionally
marginalized by membership in minority racial or ethnic populations.
Prevailing definitions of disability used by Federal agencies do
not reflect the new paradigm of disability concepts because the Federal
definitions typically stress limitations and do not mention the
potential role of accommodations or environmental conditions. The field
of disability and rehabilitation research also continues to lack a
widely accepted conceptual framework to identify and measure
disability. The newer conceptual frameworks all focus on some continuum
that progresses from etiology through disease, impairments, and
functional limitations, which, when combined with external or
environmental conditions, may cause deficits in the performance of
daily activities or desired social roles. The latest proposal for
classifying disability is the International Classification of
Functioning, Disability and Health (ICF) developed by the World Health
Organization (WHO), and last revised in 2001.\3\ A diagram of the ICF
classification schema can be found at http://www.cessi.net/longrangeplan/icf.htm.
---------------------------------------------------------------------------
\3\ The ICF represents a revision of the International
Classification of Impairments, Disabilities, and Handicaps (ICIDH),
which was first published by the WHO for trial purposes in 1980.
Developed after systematic field trials and international
consultation, it was endorsed for international use on 22 May 2001
by the Fifty-fourth World Health Assembly (resolution WHA54.21).
http://www3.who.int/icf/intros/ICF-Eng-Intro.pdf.
---------------------------------------------------------------------------
The ICF allows one to view disability as a dynamic interaction
between the person and the environment. ICF's diagram of its
classification schema depicts the multiple interactions of the person
with the environment, and the various aspects of the person. The ICF
provides a method for organizing measures of function, activity,
participation, and environmental context. NIDRR and many of its partner
agencies are considering the appropriateness of applying the ICF to
U.S. populations, and are engaged in assessments of the necessary
measurement tools and data systems. A later chapter of this Plan,
Disability Demographics, presents a more thorough discussion of the
ICF.
Prevalence of Disability
Current figures on the number of people with disabilities in the
United States indicate an estimated 54 million individuals have
disabilities, based on definitions employed in national surveys, and
self-reported responses to them. General definitions and descriptions
of the target population, in terms of the domains of NIDRR research--
employment, health and function, participation and community living,
and technology for access and function--are provided in this section. A
later chapter of the Plan includes an analysis of the data in current
measurement systems, and identifies gaps to be addressed by future
research.
General descriptors of NIDRR's target population, drawn from data
about the disabled population, show that disability is closely related
to aging and poverty. Persons with disabilities are
[[Page 8172]]
more likely to be elderly, poor, of low educational status, and
unemployed than those with no disabilities. People with disabilities
are less likely to participate in community and social activities and
are more likely to lack adequate transportation. However, persons with
disabilities are about as likely as those without disabilities to have
health insurance (relying heavily on Medicare and Medicaid) and
somewhat more likely to have an identified source of healthcare. The
disabled population is not monolithic, and there are many variations
based on type of disability and age of onset, for example, as well as
on the demographic characteristics mentioned here.
Tables 1 and 2 describe the overall disabled population--its size,
age and race distributions, and the frequency of conditions underlying
the disabilities. Table 3 includes type of disability in the
characterization. These tables are from the U.S. Census Bureau, Census
2000, Summary File 3.
Table 1.--Prevalence of Disability by Age and Race
----------------------------------------------------------------------------------------------------------------
Percent with a disability
-----------------------------------------------------------------------------------------------------------------
Total population 5 and 65 and
Race and Hispanic or Latino Origin aged 5 and older older 5 to 15 16 to 64 older
----------------------------------------------------------------------------------------------------------------
Total......................................... 257,167,527 19.3 5.8 18.6 41.9
White alone....................................... 195,100,538 18.5 5.6 16.8 40.6
Black or African American alone................... 30,297,703 24.3 7 26.4 52.8
American Indian and Alaska Native alone........... 2,187,507 24.3 7.7 27 57.6
Asian alone....................................... 9.455,058 16.6 2.9 16.9 40.8
Native Hawaiian and Other Pacific Islander alone.. 337,996 19 5.1 21 48.5
Some other race alone............................. 13,581,921 19.9 5.2 23.5 50.4
Two or more races................................. 6,206,804 21.7 7.1 25.1 51.8
Hispanic or Latino (of any race).................. 31,041,269 20.9 5.4 24 48.5
White alone, not Hispanic or Latino............... 180,151,084 18.3 5.7 16.2 40.4
----------------------------------------------------------------------------------------------------------------
Table 2.--Prevalence of Disability by Age and Gender
--------------------------------------------------------------------------------------------------------------------------------------------------------
Total Males Females
--------------------------------------------------------------------------------------------------------------------------------------------------------
Number Percent Number Percent Number Percent
--------------------------------------------------------------------------------------------------------------------------------------------------------
Population 5 years and over...................................... 257,167,527 100 124,636,825 100 132,530,702 100
With any disability.............................................. 49,746,248 19.3 24,439,531 19.6 25,306,717 19.1
Population 5 to 15 years......................................... 45,133,667 100.0 23,125,324 100.0 22,008,343 100.0
With any disability.............................................. 2,614,919 5.8 1,666,230 7.2 948,689 4.3
Population 16 to 64 years........................................ 178,687,234 100.0 87,570,583 100.0 91,116,651 100.0
With any disability.............................................. 33,153,211 18.6 17,139,019 19.6 16,014,192 17.6
Population 65 years and over..................................... 33,346,626 100.0 13,940,918 100.0 19,405,708 100.0
With any disability.............................................. 13,978,118 41.9 5,634,282 40.4 8,343,836 43.0
--------------------------------------------------------------------------------------------------------------------------------------------------------
The following table, Table 3, presents information about three
categories of disability--sensory, physical, and mental--by age and
gender. The table also includes additional information about major life
activities. Thus, these are not unduplicated counts, and the totals
exceed the estimated number of individuals who have disabilities.
Table 3.--Characteristics of the Civilian Non-Institutionalized Population by Age, Disability Status, and Type of Disability: 2000
--------------------------------------------------------------------------------------------------------------------------------------------------------
Total Males Females
--------------------------------------------------------------------------------------------------------------------------------------------------------
Number Percent Number Percent Number Percent
--------------------------------------------------------------------------------------------------------------------------------------------------------
Population 5 years and over...................................... 257,167,527 100 124,636,825 100 132,530,702 100
With any disability.............................................. 49,746,248 19.3 24,439,531 19.6 25,306,717 19.1
Population 5 to 15 years......................................... 45,133,667 100.0 23,125,324 100.0 22,008,343 100.0
With any disability.............................................. 2,614,919 5.8 1,666,230 7.2 948,689 4.3
Sensory.......................................................... 442,894 1.0 242,706 1.0 200,188 0.9
Physical......................................................... 455,461 1.0 251,852 1.1 203,609 0.9
Mental........................................................... 2,078,502 4.6 1,387,393 6.0 691,109 3.1
Self-care........................................................ 419,018 0.9 244,824 1.1 174,194 0.8
Population 16 to 64 years........................................ 178,687,234 100.0 87,570,583 100.0 91,116,651 100.0
With any disability.............................................. 33,153,211 18.6 17,139,019 19.6 16,014,192 17.6
Sensory.......................................................... 4,123,902 2.3 2,388,121 2.7 1,735,781 1.9
Physical......................................................... 11,150,365 6.2 5,279,731 6.0 5,870,634 6.4
Mental........................................................... 6,764,439 3.8 3,434,631 3.9 3,329,808 3.7
Self-care........................................................ 3,149,875 1.8 1,463,184 1.7 1,686,691 1.9
Going outside the home........................................... 11,414,508 6.4 5,569,362 6.4 5,845,146 6.4
Employment disability............................................ 21,287,570 11.9 11,373,786 13.0 9,913,784 10.9
Population 65 years and over..................................... 33,346,626 100.0 13,940,918 100.0 19,405,708 100.0
With any disability.............................................. 13,978,118 41.9 5,634,282 40.4 8,834,836 43.0
[[Page 8173]]
Sensory.......................................................... 4,738,479 14.2 2,177,216 15.6 2,561,263 13.2
Physical......................................................... 9,545,680 28.6 3,590,139 25.8 5,955,541 30.7
Mental........................................................... 3,592,912 10.8 1,380,060 9.9 2,212,852 11.4
Self-care........................................................ 3,183,840 9.5 1,044,910 7.5 2,138,930 11.0
Going outside the home........................................... 6,795,517 20.4 2,339,128 16.8 4,456,389 23.0
--------------------------------------------------------------------------------------------------------------------------------------------------------
Part B: Managing For Success
Preface
This section of the Plan contains two chapters. The first chapter
describes NIDRR's logic model for outcomes achievement, which has
served as the basis of development of the Plan.
The second chapter details the systematic approaches NIDRR intends
to pursue to advance the management of the Institute's operations. A
central feature is a move toward a fixed competition schedule. The
second chapter also describes efforts to enhance NIDRR's scientific
review process, and the emphasis on outcomes evaluation.
I. NIDRR Logic Model
Introduction
NIDRR has based the development of the Plan on its mission
statement. The mission statement emphasizes participation in the
community by persons with disabilities as the overall objective of
NIDRR's investment activities. NIDRR's mission statement was derived
from the enabling legislation for NIDRR. In developing its research
agenda, NIDRR drew upon accountability guidelines from the Department
and OMB, which focus on outcomes of research activities.
To provide a theoretical framework for the Plan and guide its
implementation, NIDRR developed its program Logic Model (see Appendix
2), which represents graphically the different types of short-term and
intermediate outcomes that NIDRR's investments in R&D are designed to
produce or contribute to and the interrelationships among these
intended outcomes. The Logic Model also serves as the framework for
depicting NIDRR's planned performance assessment and outcomes
evaluation processes, which are key to demonstrating the Institute's
accountability for research results. The width and density of the
upward-directed arrows, at the bottom of the Logic Model diagram,
indicate that the degree of accountability and hence intensity of NIDRR
efforts in assessment and evaluation is greatest for the short-term
outcome arenas.
How the NIDRR Logic Model Contributes to the Long-Range Plan
The value of any logic model is that it provides:
A tool for outcomes planning and performance management
that depicts the ``chain of events'' linking outcome goals to outputs,
activities and inputs.
A vehicle for communicating program goals and guiding
program improvement and evaluation.
A graphic representation or ``blueprint'' of the key
elements of a program or intervention, and how these elements will work
under certain conditions to ``solve'' identified problems.
Definitions of Components of the NIDRR Logic Model Situation
The uppermost block in the Logic Model, labeled ``situation,''
highlights the gaps in knowledge, skills, policy and practice that
hinder attainment of parity in employment, health and function, and
participation for people with disabilities compared to the non-disabled
population (see Appendix 2). The Logic Model depicts the short-term and
intermediate outcomes that NIDRR seeks to achieve directly and
indirectly through its investments in research and related activities
to eliminate these gaps and inform needed changes in policy, practice,
behavior, and system capacity. These advancements and changes, in turn,
contribute to the long-term outcome of improving the lives of people
with disabilities.
Major Domains of NIDRR Mission
The substantive focus of NIDRR's investment activity is R&D applied
to maximizing the participation of people with disabilities. This
activity is centered on the three major life domains of interest to
NIDRR: (a) Employment, (b) participation and community living, and (c)
health and function. In the Logic Model, interlocking circles represent
these inter-related domains (see Appendix 2). The achievement of goals
related to the three major life domains is facilitated by technology,
which addresses both access and function, and knowledge of disability
demographics, including characteristics and trends in the population of
people with disabilities. Policymakers, service providers, researchers,
and disability advocates are the principal users of demographic data.
NIDRR is uniquely positioned to address these inter-connected domains.
The employment circle of the Logic Model represents research on
employment-related activities and strategies to improve employment
outcomes and labor force participation. Lack of parity in employment
remains one of the greatest barriers to independence for people with
disabilities. Research is needed on strategies to enable Americans with
disabilities to access careers, integrate into the workforce, and
participate as full citizens in the economic marketplace. Employment,
although an integral part of community participation, is treated as a
separate domain because of NIDRR's statutory relationship with the
Federal-State vocational rehabilitation program, and because of its
overwhelming significance to people with disabilities and society.
The participation and community living circle of the Logic Model
represents the interaction with the social and built environment in a
way that maximizes full inclusion and integration of people with
disabilities. This domain focuses on direct supports that increase the
availability of acceptable options and opportunities to make choices
and enhance participation in everyday activities. For the promise of
full participation and community living to become a reality, people
with disabilities need safe and affordable housing; access to
transportation; access to the political process; and access to the
services, programs, and activities offered to all members of the
community at public and private facilities.
The health and function circle of the Logic Model represents
individual
[[Page 8174]]
factors such as the structure and function of the human body, as well
as strategies to prevent, identify, assess, or resolve causes and
consequences of disability. In this domain, as in the others, NIDRR
stresses the importance of individual choice--choosing providers,
services and objectives. The health and function domain encompasses
research to achieve outcomes at the individual level--improved
functioning, fitness, and health, including mental health. This domain
also addresses goals at the system level, such as more effective
service delivery systems, better access (financial and logistical) to
healthcare services, and the assessment of rehabilitation
effectiveness.
The outer ring of the Logic Model includes two additional domains:
technology for access and function and disability demographics.
Technology for access and function is essential to community
integration, employment, and health and function, and plays a major
role in enabling a good fit between individuals with disabilities and
the environment. The domain of disability demographics emphasizes
describing and characterizing people with disabilities to provide a
better understanding of the phenomenon of disability. Improved
statistics on disability and participation are critical to developing
policies and strategies that will be effective in addressing barriers
to participation faced by individuals with disabilities, and in
assessing the Nation's progress in improving life outcomes for
individuals with disabilities.
Long-term Outcomes
Generally, outcomes refer to anticipated or actual changes in a
target system that occurs from carrying out program activities and
outputs. Long-term outcomes are the desired end-results of a program at
the societal level; long-term outcomes are indicated by changes in
overall conditions of the target population. Given their scope, long-
term outcomes go beyond the direct or indirect influence and control of
any one agency. Because of this, NIDRR is not accountable for
producing, by itself, societal level improvements in the overall
conditions of people with disabilities. Rather, the Institute's long-
term outcomes, which focus on eliminating disparities in employment,
participation and community living, and health and function, serve as
critical anchor points guiding all strategic planning and research
management efforts. Consistent with the Act, NIDRR's span of
accountability centers on generating, romoting, and disseminating
short-term outcomes that consist of new knowledge resulting from the
combined accomplishments of its grantees. These short-term outcomes,
when combined with KT activities, can be used to inform policy, change
practice and behavior, and expand system capacity, which in turn will
contribute to improving the lives of individuals of all ages with
disabilities.
Short-Term Outcome Arenas
Short-term outcomes refer to advancements in understanding,
knowledge, skills, and learning systems that result from the successful
implementation of program activities and the use of R&D related
outputs. Within the Logic Model and in the context of disability and
rehabilitation research, there are three short-term outcome arenas,
corresponding to NIDRR's investments in three functional programs.
These functional arenas are: (1) C-B; (2) R&D; and (3) KT,
corresponding to NIDRR's three strategic goals (See Part C). Given its
centrality to the NIDRR mission, the R&D arena is further divided to
reflect three stages of knowledge development. The three stages
recognize that advancements in knowledge may occur through (a)
Discoveries, (b) new or improved theories, measures, and methods, or
(c) interventions, products, devices, and environmental adaptations.
The generation of new knowledge in this short-term outcomes block is
the primary area of direct responsibility for which NIDRR holds itself
accountable.
Although the three strategic goals are discussed separately in Part
C of the Plan, they are inextricably intertwined, in that research is
supported by C-B and feeds KT, but the process is not linear.
Inevitably, the generation of new knowledge raises new questions, calls
for new skills and leads to further discoveries, theories, and
interventions, multiplying the efficacy of NIDRR's investment.
Research and Development
R&D is divided into three generally sequential, but closely
related, outcome arenas, corresponding to stages in knowledge
development. Characteristically, research begins with significant
discoveries (stage one) and moves through theory, measure, and method
development (stage two) ultimately to enable the development of
effective new and improved interventions, products and devices, and
environmental adaptations (stage three). In this context, a product may
be a new device or technique. An adaptation may include methods to
improve physical, behavioral, or virtual environments.
The first two stages--discoveries and new or improved theories,
measures, and methods--provide the critical foundation for new ideas,
information, analyses, and scientific tools (i.e., theories, measures,
methods) upon which to base the conduct of valid and reliable research
and development activity. NIDRR will shape future priorities based on
considerations of the state of knowledge development in a particular
subject area to determine, for example, if an adequate theoretical
basis exists upon which an intervention can be developed.
Capacity Building
NIDRR will focus its specific C-B activities primarily on the need
to train new investigators to enable them to pursue topics of
importance to NIDRR's research agenda, and to otherwise increase the
capacity of the system to carry out complex studies. The Institute's
training agenda includes cross-training of individuals already skilled
in other disciplines in topics relevant to disability issues, and
training of promising young investigators, with particular emphasis on
underrepresented groups and persons with disabilities to facilitate
their participation in the research process. In addition, NIDRR
specifically supports institutional C-B through targeted initiatives.
Finally, NIDRR plays an active leadership role throughout the
Department and the Federal government in raising awareness of the needs
of people with disabilities and issues of equity.
Knowledge Translation
Equally critical to NIDRR's mission is the ability to effectively
translate and transfer the knowledge and products generated through R&D
activities. NIDRR must successfully disseminate this information for
use by intended target audiences, including individuals with
disabilities and their families and caregivers. Indeed, NIDRR will
include an assessment of the potential for translation of knowledge
gained through the project to the target audiences in considering new
projects for support. KT includes the important work of technology
transfer that directly promotes the widespread commercialization and
utilization of research results. Previously referred to as the
``Knowledge Dissemination and Utilization (KDU)'' component of NIDRR's
agenda, this arena has been renamed KT to reflect the evolution of
translation science as a field and increased emphasis in the Federal
[[Page 8175]]
government on the importance of systematic review and synthesis of R&D
results.
Intermediate Beneficiaries
This component refers to the immediate intended beneficiaries of
NIDRR products and services as well as the recipients of the outputs
and outcomes generated by NIDRR-funded grantees. This array of
recipients includes individuals with disabilities and family members,
researchers, clinicians and engineers, educators, service providers,
product developers, policy experts and decision-makers, Federal and
non-federal partners, industry representatives, employers, media, and
consumer advocates.
Intermediate Outcome Arenas
Intermediate outcomes refer to changes in policy, practice,
behavior, and system capacity that occur in part as a result of the
external use or adoption of NIDRR-funded outputs and advances in
knowledge. Unlike short-term outcomes, intermediate outcomes are under
the indirect influence of program activities and outputs and consist of
changes in decision-making and societal action. Because of the multiple
influences on these intermediate outcomes, NIDRR can only partially
influence these outcomes, and thus cannot be held accountable to the
same degree as for short-term outcomes.
Intended Beneficiaries
The intended beneficiaries of NIDRR's overall investments are
people with disabilities and their families. These individuals may
benefit either directly, or more likely, indirectly through changes in
policy, practice, behavior, and system capacity brought about through
NIDRR's investments. The of purpose of NIDRR's activities, as described
above in discussing the Long-term Outcomes, is the elimination of
disparities in employment, participation and community living, and
health and function. Intended beneficiaries include people with
impairments or limitations in mobility, communications, cognition, and
behavior.
Performance Assessment & Outcomes Evaluation
The last component of the NIDRR Logic Model depicts NIDRR's multi-
level evaluation system. The intensity of the assessment and evaluation
efforts is proportional to the thickness of the arrows of the Logic
Model, and is greatest for short-term outcomes (see Appendix 2).
Performance assessment takes place annually and is focused on
evaluating grantee progress and the quality and relevance of the
aggregate of R&D findings and accomplishments. Moreover, the
performance assessment identifies the strengths and weaknesses of
portfolio areas, which are defined as clusters of projects in NIDRR's
domains and the Institute's program funding mechanisms. Data from these
annual performance assessment and portfolio reviews are used to satisfy
GPRA and PART requirements and inform program improvement efforts.
Outcomes evaluation, in contrast, occurs periodically and is focused
primarily on a retrospective assessment of the long-term achievements
in a portfolio area relative to both short-term and intermediate
outcomes, as well as any contributions at the societal level toward
improving the overall condition of people with disabilities. Both types
of evaluations are performed by independent review panels comprised of
scientists, engineers, clinicians, service providers, policy analysts,
industry representatives, consumer advocates, individuals with
disabilities, and family members.
Contextual Factors
Some of the factors that may change the activities implemented by
NIDRR, both directly and indirectly, are called ``contextual factors''
and are shown at the base of the Logic Model (see Appendix 2). Changes
may be mandated directly in changing policies or indirectly in a
changing environment that might require new strategies. The contextual
factors include variable funding, scientific and technological
advancements, societal attitudes, economic conditions, changing public
policies, and coordination and cooperation with other government
entities.
II. Managing for Results
A. Overview
In this chapter, NIDRR presents the management agenda for
implementing its disability and rehabilitation research portfolio.
Management of NIDRR research programs and projects encompasses many
distinct aspects: provision of a results-oriented planning environment,
selection and scheduling of priorities, operation of program mechanisms
to carry out research and related activities, organization and
monitoring of projects, and support for interagency and international
research efforts.
To further advance the management of research and related
activities, NIDRR is developing plans to improve its grant-making
procedures and to expand the scope and enhance the effectiveness of its
standing peer review panels. The Plan delineates and clarifies the
processes of decision-making, and includes a new emphasis on research
portfolios and research clusters, which use the different program
mechanisms to integrate disparate research projects in a given topical
area. Over the lifetime of the Plan, NIDRR will systematically evaluate
all aspects of its management activities.
B. Results-Oriented Planning Environment
To facilitate advancements in rehabilitation and disability and
rehabilitation research, NIDRR will delineate and plan strategic goals,
identify specific program options for achieving the goals over time,
and manage a wide range of projects derived from priorities based on
these goals and program decisions. GPRA requires that all Federal
managers link resources to results through use of outcome performance
measures.
NIDRR research comprises a diverse portfolio of projects. As is
true of overseeing and directing any sizeable portfolio of investments,
management must set criteria for choices, time investments, execute
decisions, monitor returns, evaluate outcomes, rebalance as necessary,
and report results. NIDRR anchors its portfolio management and
performance evaluation systems in the legislative mandate set forth in
the Act. As described in the previous chapter, NIDRR translates the
legislative mandate into its mission and strategic goals through
continually assessing performance, measuring project progress and
short-term outcomes, tracing intermediate outcomes as the target
systems use the projects' results, and identifying long-term outcomes
as depicted in the NIDRR Logic Model.
Within the accountability goals established by GPRA and PART, NIDRR
is responsible for measuring and reporting the progress of its many
research projects. NIDRR managers and program stakeholders face the
continuing challenge of delineating longer-term achievements, as these
will improve the use of scarce resources, advance outcome measures, and
provide feedback on strategic goals.
Priority Planning
NIDRR, like all Federal agencies, must plan and schedule its
decision-making for portfolio management over a multi-year time frame.
At any given time, NIDRR is engaged in implementing and managing
ongoing projects, conducting grant competitions and making new awards,
planning for the next immediate budget cycle, and assessing the
[[Page 8176]]
consequences of multi-year funding decisions for subsequent funding
cycles. Table 4 presents time frames and descriptions of activities for
the management of NIDRR research.
Table 4.--Time Frames for Planning and Implementing Management Improvements
----------------------------------------------------------------------------------------------------------------
Description of
Time horizon Process activities Product
----------------------------------------------------------------------------------------------------------------
36-24 months prior to start of fiscal Pre-planning.......... Review Plan, strategic Potential priority
year (FY). and performance goals, areas in broad terms.
portfolio of existing
projects to address
emerging opportunities
and ongoing needs.
24-18 months prior to start of FY.... Planning.............. Initial environmental Refined list of
scan, identification priorities.
of potential projects.
9 months prior to start of FY through Program Priority Based on budget and Priorities.
start of FY. Choices. identified goals and
criteria, establish
specific priorities
and issue
announcements.
During FY............................ Pre-Award Decision and Make award decisions Projects chosen for
Award. based on peer review award based on peer
and program review and extent to
considerations. which proposed
activities match Plan.
1 to 5 years post-award.............. Post-Award Management. Throughout project Data on project and
periods, monitor center operations.
progress, assess
trends, feed back data
for planning and
portfolio decisions.
3-10 years post-award................ Performance evaluation Review goal Documented outcomes.
measurements,
programs, and
combinations of
projects for outputs,
outcomes, and impacts.
----------------------------------------------------------------------------------------------------------------
Timeline
This Plan describes a number of important changes that will improve
the way NIDRR manages its multiple responsibilities to constituencies,
grantees and potential grantees, and the public. These changes will
take five years or longer to be fully realized. The timeline for
completion of these efforts is identified in Table 5.
Table 5.--Timeline for Management Achievements
------------------------------------------------------------------------
Description/
Item Implication Timeframe
------------------------------------------------------------------------
Regulation changes............. Update selection 1 year.
criteria and
legislative
references; implement
small grant
authority; describe
procedures for
resubmission;
establish proposal
content.
Fixed competition schedule..... Annual announcement of 3 years.
priorities; notices
inviting
applications, peer
reviews, and grant
awards at regular
dates.
Standing panels for competition Enhance expertise of 3 years.
review. standing panels.
Evaluate clusters.............. Using expert panels, 5 years.
review topical
project clusters.
GPRA panels.................... Establish standing 3 years.
panels for annual
review of quality of
outputs, research
rigor, short-term
outcomes.
Environmental scan............. Establish procedures 4 years.
for conducting
comprehensive studies
of relevant
technological,
scientific and policy
changes with
implications for
disability.
Independent Expert review...... Conduct comprehensive 3 years.
review by independent
panel of status of
research on
disability.
------------------------------------------------------------------------
To accomplish a number of goals, NIDRR plans to initiate efforts to
change regulations governing the management of its research portfolio.
NIDRR will make changes to selection criteria that will improve the
quality of its peer review and provide for more consistent evaluation.
Moreover, the initiation of a streamlined, systematic process for
resubmission of applications would be useful for grantees and peer
reviewers. The establishment of elements needed for a standardized
proposal narrative would facilitate a more consistent review. The
following steps are intended to advance NIDRR research management:
NIDRR will implement a regular, fixed competition
schedule. This will facilitate the recruitment and retention of
standing panels of reviewers.
NIDRR will undertake a rotating review of all major
components of its research portfolio.
In order to meet the obligations of GPRA, NIDRR will
establish expert panels to conduct an annual review of its clusters of
projects. Data for this evaluation will be drawn from existing (or
planned) data sources to the maximum possible extent, e.g., using the
Annual Performance Report (APR) as one source document.
NIDRR intends to institute systematic ``environmental
scans'' to help ascertain elements of technology, science, or policy
that may impact research to be conducted in the future. These scans
shall be carried out by NIDRR staff, making use of all available data
sources, and may involve experts and other stakeholders as needed.
As part of the ongoing evaluation of the appropriateness
of the NIDRR research portfolio, NIDRR will, together with other
Federal partners, initiate an
[[Page 8177]]
external study of disability research and related topics.
Funding Mechanisms and Strategies
NIDRR operates a number of program mechanisms to support research
and related activities. These mechanisms vary in purpose, duration, and
resource allocation. Rehabilitation Research and Training Centers
(RRTCs) and the Rehabilitation Engineering Research Centers (RERCs) are
primary recipients of NIDRR resources and carry out many of NIDRR's
major research efforts.
NIDRR support of RRTCs is specified in the Act. RRTCs are funded to
conduct coordinated and advanced programs of research, training, and
information dissemination in priority areas that are specified by
NIDRR. RRTCs are expected to be multidisciplinary; involve people with
disabilities and their families; provide advanced research training, as
well as training for rehabilitation practitioners, consumers, and
families; and provide undergraduate education. RRTCs are designed to be
national centers of scientific research and resources for the
disability and rehabilitation field, providing information and
technical assistance to a broad constituency. Each RRTC typically is
funded for five years.
RERCs also are specified in the Act, and conduct engineering and
technological research to design, develop, and test equipment,
technologies, assistive devices, and methods that will remove
environmental barriers and provide innovative models for rehabilitation
technology service delivery.
The Act also provides for discrete research projects and other
related work. These undertakings are carried out either through
Disability and Rehabilitation Research Projects (DRRPs) that are
directed toward solving specific problems identified by NIDRR, or
through the Field-Initiated (FI) Program.
A program of investigator-initiated research was created by NIDRR
in 1984, under its R&D authority. This FI program supplements NIDRR's
directed research portfolio by addressing diverse research issues in
promising and innovative ways. FI research projects cover all aspects
of NIDRR's domains, including employment, independent living, medical
rehabilitation, and development of new technologies, and address all
disability populations with a wide range of research approaches.
The Act also provides for two C-B programs--Fellowships and
Advanced Rehabilitation Research Training Grants (ARRTs). Fellowships
are awarded to individuals in various stages of their careers to
support one year of independent research in a selected area. ARRTs are
awarded to institutions of higher education to support advanced
training in research in any discipline investigating issues of
disability and rehabilitation. ARRTs, which typically are funded for
five years, provide stipends to trainees and funding for mentoring,
instruction, hands-on research experience, and opportunities for
presentation and publication.
NIDRR also supports service demonstration and research programs to
develop and evaluate improved methods and systems of rehabilitation
care for individuals with spinal cord injury, traumatic brain injury,
and burns.
Fixed Competition Schedules
NIDRR will move toward a fixed schedule for competitions that will
enable potential grantees to better plan application efforts,
facilitate NIDRR's work with reviewers, and increase efficient grant-
making operations at NIDRR. Fixed schedules will maintain consistent
dates for key activities in the competition process, including
announcements of final priorities, application due dates and award
dates. These goals are consistent with the Department's overall
management directions. To accomplish these goals, NIDRR intends to
publish all of its proposed priorities and, following public comment,
final priorities annually, on a combined basis. This will allow NIDRR's
constituents to view the overall scope of NIDRR's planned priorities
and to evaluate and submit comments on these priorities at one time
rather than at different times throughout the year.
Managing for Results at NIDRR
NIDRR research management will be guided by many elements and will
employ several research planning and decision-making principles in its
work. These principles include:
NIDRR will implement its research portfolio through use of
``clusters'' of projects that address common subject matters and employ
various funding mechanisms. This management approach will be used for
specified types of R&D activities and will be grouped around the
domains of the NIDRR Logic Model. Portfolio management will utilize
strategies that organize and review clusters or groups of related
projects. The organization of program analysis by common elements,
including subject and the target population that will benefit, improved
collaborations, sequencing of activities and related methods will
encourage collaboration among researchers. Management will facilitate
communication among related projects through meetings, technical
assistance, research compilations, and related activities.
To establish the context for its research, NIDRR will
assess portfolio investments and opportunities by applying criteria
that ascertain the importance of proposed activities in relationship to
NIDRR's mission and authority; past, current, and emerging projects;
scientific advances; and work of research partners in the U.S. and
abroad. Distinguishing the context for a NIDRR initiative may include
identifying the legal basis for action, determining partner agency
needs, capitalizing on opportunities to respond to new discoveries,
continuing effective research, or supporting a national initiative.
NIDRR will communicate decisions clearly and
understandably to a wide range of audiences. The complex
interrelationships inherent in disability and rehabilitation research
require that NIDRR's decision making process be clear and
understandable to a wide range of audiences. Success will be attained
through increasing public input to planning; holding regularly
scheduled competitions; and continually assessing the quality of
communications with stakeholders.
NIDRR will make choices regarding resource allocation
using the best available evidence. NIDRR will ensure that explanations
of directed activities are clear to external observers in reviews of
funding opportunities and actual awards. Portfolio decisions will
reflect advisory input such as scientific conferences, literature
reviews and public comments. NIDRR will provide explanations for the
use of ``directed'' versus ``non-directed'' (i.e., NIDRR priorities vs.
FI) research.
NIDRR will allocate resources across program clusters to
achieve the best relationship of costs and benefits. Factors for
consideration may include the anticipated size of the investment;
available funds; congruence with NIDRR's Logic Model; and risks of
failure to act, including lost value and expertise.
NIDRR will build on current capacity and promote the
development of new capacity to anticipate future needs. C-B has two
important dimensions in NIDRR's management framework. First, NIDRR
strives to assess readiness of potential applicants to address the
specific research topics. Second, some NIDRR program activities have as
their primary purpose the enhancement of future disability and
[[Page 8178]]
rehabilitation research efforts through improved resources.
For both dimensions, NIDRR management must assess the ways in which
investments support not only new research areas, but also the
development of methods and measures that improve outcome assessment and
evidence-based practices, and the investment in people to improve
research capacity. NIDRR also has responsibilities to address areas of
special need, such as improving services and opportunities for racial
and ethnic minority populations (see section 21 of the Act); research
capacity to address specific geographic issues; and training for
individuals with disabilities and their families.
Quality program management at NIDRR will require the
further development of internal and external controls to provide
knowledge of ongoing and completed research and its utility to
stakeholders.
Internal and external controls will assist in assessing program
progress in implementing the Plan. High-quality scientific peer review
with preeminent peers will ensure high quality research. Participation
of people with disabilities at all stages of NIDRR-funded work also
will contribute to quality outcomes. Monitoring of project and research
activity will ensure that funds are spent wisely, efforts are on
target, effective feedback is provided, and best practices are
identified. Formative and summative ``in-process'' peer reviews will
continue to establish quality mechanisms for evaluating and
disseminating research findings.
Peer Review Processes
Application review is central to efforts that ensure the integrity
and validity of the research agenda. This review provides both face and
content validity to the research portfolio. Thus, it is imperative that
this process be as effective as possible.
As mandated by the Act, NIDRR continues its commitment to a review
of its research portfolio by a fully representative audience that
includes both researchers and consumers. NIDRR envisions a standardized
peer review process across NIDRR's research portfolio, with standing
panels servicing many program funding mechanisms.
NIDRR will establish standing panels as part of an overall revision
of program operations. By providing standing panels, NIDRR anticipates
achieving a more consistent review of applications, thereby encouraging
continued growth and improvement in those applications. A fixed
competition schedule, as described above, will allow panelists to
reserve time for the reviews and enable a higher percentage of
individuals to complete their term of service. Such consistency should
increase reviewer familiarity and skill with NIDRR research programs,
allow effective role modeling by panelists, and ensure more effective
training efforts. NIDRR will provide training to all panelists to
optimize their effectiveness in reviewing proposals.
Monitoring
As is depicted in the NIDRR Logic Model (Appendix 2), NIDRR will
evaluate the outcomes of its grantee research efforts; measures of
success will vary by goal and topic. NIDRR will use the results of
outcomes research to judge projects for productivity gains, economic
value, practitioner satisfaction, and end user satisfaction. Product
indicators will measure how a new or improved tool contributes to
better rehabilitation technologies. Citations and bibliometrics on a
grantee's research efforts will be applied to identify widespread use
of a new or improved theory, measure, or method.
Historical tracing--examining research to outcome, or backward from
outcome to contributing research--will be employed to identify key
times when a theory, measure, or method advanced the state of a
particular field.
NIDRR is developing a systematic tracking of instruments developed
by grantees (Tools List), which, along with patent counts, will serve
to verify outcomes of research methods and products. Systematic reviews
or meta-analyses will be used to evaluate aggregated research outcomes.
NIDRR will employ survey techniques to indicate widespread or
specialized use of a tool or measure. Qualitative studies of social and
behavioral dimensions of research activities indicate the benefit
gained from improved tools. NIDRR also works with professional groups
to identify increased use of new measures in research and practice
guides. The Federal government requires that interventions research
adhere to standards for Human Subjects Protection, privacy, and data
safety monitoring; such standards are monitored in conjunction with
appropriate Department officials.
Research Cooperation
As a leading Federal agency involved in disability and
rehabilitation research, NIDRR works closely with numerous other
Federal agencies. These working relations are fostered through
memoranda of understanding and other interagency agreements that
facilitate joint projects. These agreements have resulted in research
jointly sponsored with the Substance Abuse and Mental Health Services
Administration, the Agency for Healthcare Research and Quality, the
Centers for Disease Control and Prevention, the National Institutes of
Health, and other components of the Department of Health and Human
Services (HHS). NIDRR also conducts employment research jointly with
the U.S. Department of Labor and conducts NFI-related activities with
the Office on Disability of HHS, through memoranda of understanding.
Another avenue for interagency cooperation is participation in
groups such as the Washington Research Evaluation Network (WREN), a
partnership of Federal agencies that serves as a forum for the R&D
evaluation community in exploring new approaches that will improve the
management of science and technology organizations. These efforts will
assist NIDRR as it examines and implements performance measures to
assess the quality, effectiveness, and utility of its R&D investment.
Interagency collaborations can facilitate addressing mutual and
individual concerns in research areas. A major mechanism for fostering
such collaboration is the ICDR.
Interagency Committee on Disability Research
The ICDR, authorized by the Act, will continue to promote
coordination and cooperation among Federal departments and agencies
that conduct disability and rehabilitation research programs. NIDRR is
the administrative home of the ICDR, and the Director of NIDRR chairs
this committee. Representatives of more than 35 Federal entities
regularly participate in the ICDR. In addition to the full committee,
five subcommittees address specific issues: Disability Statistics,
Medical Rehabilitation, Technology (including Technology Transfer),
Employment, and the NFI).
The goals of the ICDR and its subcommittees are to increase public
input to ensure that research efforts lead to solutions for identified
needs, to improve the visibility of Federal disability research in
general, and to increase collaboration among agencies. The ICDR meets
quarterly, and subcommittees meet either quarterly or more frequently.
As required by the Act, the ICDR submits an annual report of its work
to the President and Congress. Under the NFI, funds are allocated to
support the ICDR in coordinating Federal disability research programs
relative to technology. The Plan proposes to support the continued work
and accomplishments of the ICDR;
[[Page 8179]]
information on the ICDR can be accessed on the Internet at: http://www.icdr.us.
International Research Program
The magnitude of the overall Federal R&D effort directed to
disability and rehabilitation research is relatively small, compared to
R&D efforts in other areas. Thus, international cooperation and
exchange has been viewed as an important mechanism by which the
critical mass of disability and rehabilitation research can be
increased. Section 204(b)(6) of the Act states that the Director of
NIDRR is authorized to: ``* * * conduct a program for international
rehabilitation research, demonstration, and training * * *'' and many
nations look to the U.S. as a model for disability and rehabilitation
research in technology.
NIDRR has funded the international exchange of information and
experts. NIDRR projects have demonstrated the value of international
collaboration in developing technology for individuals with
disabilities in prosthetics development--for example, a sand casting
system that greatly facilitates prosthetic socket fabrication.
Additionally, addressing the issues concerning Web accessibility
continues to be mutually beneficial to NIDRR's constituents and its
international partners.
NIDRR also has funded research in the multicultural aspects of
disability and rehabilitation research and in understanding how
cultural perspectives affect the development and implementation of
intervention strategies and the interpretation and analysis of
disabilities.
Thus, there is a compelling reason for NIDRR to continue its work
on projects with an international scope, including issues of concern
for individuals with disabilities in the Middle East, Asia/Pacific,
Africa, Europe/North America, Latin America, and Caribbean regions.
There is a possibility for creating further collaborations through the
Department and the United States-Mexico Binational Commission. NIDRR
supports the United Nations Educational Scientific and Cultural
Organization (UNESCO) Flagship activities to ensure the inclusion of
children with disabilities in UNESCO's Education for All (EFA) plans.
NIDRR is interested in developing closer relationships with funding
agencies in other nations. A potential avenue for this would be the
United States-European Union (US-EU) Science and Technology Agreement
signed in 1997. NIDRR could operate under this agreement to expand
cooperation with a comparable governmental agency in the European
Commission (EC). The possibility of coordinated calls for research on
both sides of the Atlantic could greatly increase the critical mass of
research and development of technology, further improving the lives of
people with disabilities in the United States and other nations.
Part C: Addressing Outcomes Through Research and Development, Capacity
Building, and Knowledge Translation
Preface
NIDRR has built its program of funded activities around the three
arenas of R&D, C-B, and KT. For each of these arenas, there are
strategic goals and objectives. This part of the Plan presents NIDRR's
Strategic Goals and Objectives, and then presents more detailed
chapters on R&D, C-B, and KT.
Strategic Goals and Objectives
Strategic goals are broad statements of a program's aims, whereas
strategic objectives specify the means by which the goals will be
carried out. These strategic goals and objectives are intended to
communicate NIDRR's main themes and directions, and not to serve as
measurable operational objectives. NIDRR has developed the following
set of comprehensive strategic goals and objectives that reflect the
program's mission and align with both the targeted outcome arenas
depicted on the Logic Model (see Appendix 2) and the Institute's GPRA
performance measures.
Advance Knowledge Through Research and Related Activities
Generate scientific knowledge, technologies, and applications to
inform policy, change practice, and improve outcomes.
Objective 1a: Contribute evidence-based theories,
information, and analyses to increase understanding and enhance
knowledge of disability and rehabilitation related concepts, issues,
and emerging trends and developments.
Objective 1b: Provide new and improved measures and
methods to strengthen the scientific basis of disability and
rehabilitation related research, policy, and practice and increase the
generalizability of findings and utility of products.
Objective 1c: Develop new and improved interventions,
programs, products, devices, and environmental adaptations to guide
decision-making, change practice, and enhance access, function, and
opportunities for full participation.
Goal 2: Advance Knowledge Through Capacity-Building
Increase capacity to conduct and use high quality and relevant
disability and rehabilitation research and related activities designed
to guide decision-making, change practice, and improve the lives of
individuals with disabilities.
Objective 2a: Promote productive partnerships with other
Federal agencies and non-federal organizations and facilitate
improvements in R&D infrastructure to strengthen the research
portfolio, support clinical trials, and increase the effectiveness of
KT efforts.
Objective 2b: Encourage multidisciplinary applications
representing a broad array of relevant fields and from diverse
individuals and underrepresented institutions to balance the research
portfolio and strengthen the capacity to solve problems in a creative,
state-of-the-art manner.
Objective 2c: Enhance opportunities for cross-disciplinary
and advanced research training in disability and rehabilitation-related
fields and improve the quality of training provided to qualified
individuals, including students with disabilities and from minority
backgrounds.
Goal 3: Advance Knowledge Translation
Promote the effective use of science-based knowledge, technologies,
and applications to inform disability and rehabilitation policy,
improve practice, and enhance the lives of individuals with
disabilities.
Objective 3a: Promote external review of the quality of
NIDRR funded research and related activities through participation in
independent scientific collaborations (e.g., Campbell and Cochran
Collaborations) and registries.
Objective 3b: Develop tools and methods to facilitate
effective accumulation, translation, dissemination and transfer of
disability and rehabilitation related knowledge, technologies, and
applications to relevant stakeholders.
These strategic goals and objectives are addressed in the following
three chapters: I. Research and Development, II. Capacity Building, and
III. Knowledge Translation.
I. Research and Development
At the heart of NIDRR's mission is supporting research to improve
the lives of people with disabilities. The associated strategic goal
for this is to generate science-based knowledge, technologies, and
applications to inform policy, change practice, and thereby improve
overall conditions for people with disabilities. This section focuses
[[Page 8180]]
attention on the major domains as seen in the Logic Model, beginning
with employment of people with disabilities, which is a major concern
of the Department and of NIDRR. Similarly, NIDRR is interested in
maximizing choices for persons with disabilities as they select their
dwellings, transportation, and life activities. Health and function are
essential components of such life choices. A focus on technology that
supports these choices is of central importance to NIDRR.
As NIDRR establishes goals and priorities for effective resource
allocation, the Institute is interested in improving knowledge about
people with disabilities, including the nature and duration of
disability, where they live, and what kinds of jobs they have.
The future research agenda for NIDRR rests on the strategic goals
and objectives defined above and on the long-term outcomes depicted in
the Logic Model, which call for eliminating disparities in employment,
participation and community living, and healthcare between people with
disabilities and the general population. However, because achieving
this desired end-result requires changes in the overall condition of
people with disabilities that go beyond the reach of the Institute's
mission, it is necessary to articulate an additional set of more
operational performance goals. Unlike long-term outcomes, performance
goals, which may be output or outcome-oriented, lie within a program's
span of accountability and consist of tangible, measurable objectives,
against which actual accomplishments and achievements can be compared.
Within the NIDRR research agenda, performance goals are formulated
separately for each of the major domains of the Institute's mission.
However, it is important to note that because of differences in the
needs of consumers and levels of knowledge and methodological
development across domains, the number of articulated performance goals
may differ among the domains. NIDRR will publish specific
implementation strategies in the form of proposed priorities and,
following public comment, final priorities annually, on a combined
basis.
A. Employment
Overview
For many people with disabilities, employment that is challenging,
fulfilling, and fairly and adequately compensated is the ultimate
rehabilitation outcome. For those individuals interested in workforce
participation, employment shapes the lives of individuals with
disabilities at all stages of life. Successful workforce participation
requires supports and partnerships of employers, service providers,
workers, and often a network of family, friends, and community
entities. At the individual and systems level success is often measured
in terms of acquisition, improvement, and enhancement of skills,
productivity, earnings, job retention and advancement, and benefits.
NIDRR advances employment-related innovations that contribute to
success at work and subsequent improvements in quality of life in
education, home, and community.
Research can be used to strengthen the scientific basis of
disability-related employment policy and practice. Studies provide
validated information that improve understanding of employment policy
and practice as it affects the workforce and society. Moreover,
research findings related to career planning, job entry, advancement,
and retention can assist individuals with disabilities, particularly
those with significant disabilities, in moving from dependency on
public benefits to self-sufficiency, or from underemployment into work
that is consistent with the individual's strengths, abilities, and
interests. Examples include workplace assistance, methods, and
techniques developed from productivity studies, and accommodations
improve on-the-job outcomes.
Employment research supported by NIDRR for people with disabilities
strives to identify proven job enhancements and career building blocks
to sustain them in the workforce. NIDRR supports studies to improve
knowledge of societal, environmental, individual, and behavioral
factors that serve as barriers or facilitators for employment.
The Context for Research on Employment
The employment policy environment has changed dramatically in
recent years. Laws such as the Ticket to Work and Work Incentives
Improvement Act (TWWIIA) and other initiatives were designed to erase
some of the disincentives to work that current public policy and
programs present for beneficiaries. Sound research at the systems and
individual levels is necessary to evaluate the impact of long-standing
policies and programs, and to assess new developments as they are
considered for national implementation, modification, or elimination.
Both individuals and employers are intended beneficiaries of NIDRR
employment research. For individuals, employment research can develop
and improve interventions for and measures of individual function and
task performance at all stages of life. NIDRR's employment research may
be general across disabilities or specific to certain target
populations. Many employment issues, particularly those related to
economic and social policies, have similar impacts on people with
different disabilities. However, some aspects of employment research,
such as accommodations at the work site or applications of technology,
may be specific to persons with physical, communication, cognitive, or
psychiatric disabilities and NIDRR will address their specific needs as
appropriate.
Employers are important targets for NIDRR research. Research
addresses methods to integrate unique needs of employers and disability
populations to improve employment outcomes across the life span. NIDRR
research can lead to more accessible work environments. R&D activities
seek to address employer concerns about costs of accommodations and
generate innovative approaches to alleviate obstacles to
accommodations. Research defining employer perspectives on hiring and
retaining people with disabilities is in early stages. Continued
research will help in understanding how economics, legal issues,
healthcare, functional status, and attitudes drive employer practices
with regard to people with disabilities. Employer-oriented, or demand-
side, research will help policymakers, employers, and service providers
develop better strategies for meeting the employment needs of people
with disabilities and hiring entities.
Employment researchers must overcome significant challenges in
their work, including: Diverse employment settings and service systems;
limited access to work settings to test interventions; inadequate
research methods and measures; unsatisfactory models for designing new
employment initiatives; difficulty in arranging cooperation of service
partners and employers; and work disincentives. Consequently, it is
critical for NIDRR to sponsor studies that pose significant research
questions, use sound methods, and produce results that are
generalizable to large numbers of people with disabilities.
Disability and rehabilitation researchers explore methods, costs,
and results of services of rehabilitation programs or supported
employment, including studies of natural supports at work as they
relate to employment
[[Page 8181]]
outcomes. Researchers address PAS challenges and solutions for work.
PAS aids an individual with a disability in performing activities of
daily living on or off the job. Rehabilitation technology and universal
design require systematic application of products, environmental
adaptations, and engineering. Technological innovations support
enhanced personal function and address the barriers confronted by
people with disabilities in many areas, including employment.
For a person with a disability, personal and environmental factors
such as health, age, work incentives and disincentives, accommodations,
functional capacity, education, PAS, housing and transportation
influence labor force participation. Policy and societal changes,
including technological advancements, continually change the questions
that must be asked about labor force participation, earnings, and work.
NIDRR employment research addresses a culturally diverse population
across age, gender, ethnic, disability, and socioeconomic groups. In
addition to addressing the general population of people with
disabilities, NIDRR develops strategies for targeted services for
subpopulations. For example, research identifies needs of persons who
are blind or visually impaired, or who are deaf or hard of hearing. To
assist another subpopulation of people with disabilities, NIDRR works
with the Center for Mental Heath Services in HHS on the employment
needs of persons with mental illness. NIDRR works with the Social
Security Administration on disability criteria for benefits, return-to-
work, and the TWWIIA.
Research relates transitions across the life span to employment
outcomes for people with disabilities. Transition services promote
movement from educational settings and post-school activities,
including post-secondary education, vocational training, integrated
employment (including supported employment), continuing and adult
education, adult services, independent living, and community-based
services to participation in the labor force. Activities address
individual student needs, taking into account individual preferences
and interests. NIDRR's employment research addresses the lifelong
challenges and opportunities of transitions in employment of people
with disabilities.
Accomplishments in Employment Research
Research on theories, measures and methods for employment has:
Developed, at the University of North Carolina, a method
to analyze administrative complaints and lawsuits filed under the
employment discrimination mandates of the ADA. Findings describe people
with disabilities and show that the Equal Employment Opportunity
Commission's mediation program has increased settlements.
Simplified and reorganized demographic data resources on
employment, income, and poverty status of persons with disabilities.
The online statistical resource, provided by Cornell University, is
readily available to all in need of accurate disability statistics.
Developed, at the University of Montana RRTC on rural
disability, an improved measures and methods for assessing
transportation, housing, employment, independent living services,
health and wellness facilities, and community planning activities for
people with disabilities in rural communities.
Developed, at the University of Missouri, a model designed
to ensure students with disabilities access to accommodations,
mentoring, and information technology upon graduation.
Research on new and improved interventions, products, devices, and
environmental adaptations for employment has:
Demonstrated an input-intervention-outcome model for
vocational rehabilitation services to deaf or hard of hearing consumers
under the Workforce Investment Act (WIA) and the Rehabilitation Act.
Investigated State employment services to people with
disabilities to improve outcomes within welfare-to-work initiatives.
Developed employment-related assistance services for
individuals who are blind or severely visually impaired receiving
services under the WIA.
Investigated incentives, disability management, return-to-
work, and telecommuting to improve employment outcomes and benefit
employers.
Developed approaches to help ensure that students with
disabilities access technology resources, mentoring, and advanced IT in
school and obtain related jobs upon graduation.
Developed a prototype computer software program that
provides the opportunity for job seekers who are deaf or hard-of-
hearing to practice interviewing skills for employment.
Research Agenda
Within the domain of employment research, NIDRR will focus on
increasing useful theories, measures, and methods to improve the
scientific validity of employment research and on research to increase
the availability of validated interventions, products, devices, and
environmental adaptations.
Theories, Measures and Methods
Tested theories, measures, and methods to increase the scientific
validity of employment research will enable end users to sustain
quality employment for individuals with disabilities by improving:
Understanding of employment trends for individuals with
disabilities in relation to macroeconomic, legislative and societal
changes, and demographic trends.
Services and policies that impact work-related needs of
individuals with disabilities and employers.
Tools that measure multiple dimensions of employment for
individuals with disabilities and the employment industry.
Valid theories for investigating employment phenomena and measures
of the specific needs of subpopulations should enable researchers to
map pathways from knowledge advances to target systems, and to identify
the determinants of labor force participation, lost earnings, and
recovery of employment.
Interventions, Products, Devices, and Environmental Adaptations
Research on interventions, products, devices, and environmental
adaptations will serve to develop strategies that will:
Successfully support transitions into employment and
within the employment setting across the lifespan.
Effectively increase access to and quality of vocational
rehabilitation and individualized employment services, workplace
supports, and job accommodations; successfully reduce barriers to
hiring while enhancing work skills, job acquisition, job retention, and
career advancement.
Effectively contribute to program eligibility
determinations, design of program components, and assessment of program
outcomes.
Effectively address the employment needs of individuals
with intellectual or cognitive disabilities, mental illness or
psychiatric disabilities, and episodic disabilities of all etiologies.
These interventions must be sensitive to changing demographics.
Respond to employment needs in high growth and rapidly
changing industries.
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Improve work opportunities for individuals with
disabilities from diverse interest, knowledge, language, and cultural
backgrounds.
Assist employers and policymakers to provide employment
opportunities for people with disabilities.
Create tools that match the needs of employers and
individuals with disabilities for workplace accommodations.
Improve employment outcomes for specific disability
populations, including individuals with behavioral, physical,
psychiatric, cognitive, and sensory disabilities.
Thus, NIDRR's research agenda in the area of employment is designed
to:
Strengthen the scientific basis of disability and
rehabilitation-related research and practice by increasing the
availability of validated theories, measures, and methods to improve
measurement, data sources and estimates, and enhance identification,
evaluation and prediction of the factors that facilitate successful
labor force participation and work-related transitions across the life
span.
Strengthen the scientific basis of disability-related
employment policy, practice, and research by providing evidence-based
information and analyses that improve understanding of employment
trends; specific job industries and changes within industries;
individual labor force participation and school-to-work transitions;
and that enhance knowledge of the rapidly changing societal
developments that affect employment opportunities and outcomes across
the life span.
B. Participation and Community Living
Overview
Like employment, participation and community living are at the
heart of NIDRR's mission to develop knowledge that will ``improve
substantially the options for disabled individuals to perform
activities in the community, and the capacity of society to provide
full opportunities and appropriate supports for its disabled
citizens.'' In this Plan chapter, NIDRR will use the term
``participation'' to represent all three concepts of participation,
community integration, and independent living (IL). The central
question of the Olmstead decision is whether people with disabilities
are physically living in the community. This enriched term
``participation'' will help NIDRR and the applied rehabilitation
research community to focus on the extent to which people with
disabilities are participating in the community in a manner that is
meaningful to them.
NIDRR's focus on participation follows the stated purpose of IL
programs under the Act. That purpose is ``to promote a philosophy of
independent living, including a philosophy of consumer control, peer
support, self-help, self-determination, equal access, and individual
and system advocacy, in order to maximize the leadership, empowerment,
independence and productivity of individuals with disabilities, and the
integration and full inclusion of individuals with disabilities into
the mainstream of American society.'' People with physical disabilities
historically have employed the term ``independent living'' to indicate
a philosophy, movement and service system that work toward a goal of
meaningful participation in society. Similarly, the term ``community
integration'' has been used to represent a concept, movement, and
service delivery system that encompasses the ultimate goal of full
societal participation of people with cognitive or psychiatric
disabilities. Thus, incorporation of the IL and community integration
terms within the term of participation will allow NIDRR to focus on the
ultimate outcome sought by all people with disabilities. This chapter
mainly addresses general research needs related to achieving societal
participation for people with all types of disabilities. Where
necessary, the Plan presents research topics that are specific to
promoting participation among particular subpopulations of people with
disabilities.
Research enhances the scientific basis for a wide range of policies
and practices aimed at promoting the societal participation of
individuals with disabilities. Research may include evaluation of
specific participation-promoting programs, interventions and products,
as well as development of methods, measures and theories to enhance the
scientific rigor of these evaluations. NIDRR sponsors research to
improve knowledge of individual- and societal-level factors that may
serve as barriers to, or facilitators of, participation among all
people with disabilities.
The Context for Research on Participation and Community Living
The current policy context for research that promotes full
participation of people with disabilities is supportive and
encouraging. There are two major components of this context. The first
is the Olmstead decision, which upholds the integration mandate from
Title II of the ADA, requiring public entities to provide services ``in
the most integrated setting appropriate to the needs of qualified
individuals with disabilities.'' Just as encouraging is the 2003 report
of the President's New Freedom Commission on Mental Health, which makes
recommendations that would enable adults with serious mental illnesses
and children with serious emotional disturbance to live, work, learn,
and participate fully in their communities.
The Olmstead decision holds that States must place people with
disabilities in community settings rather than institutions whenever
appropriate. This decision and subsequent efforts by States to abide by
it have spotlighted the many barriers to meaningful community
participation of people with disabilities. These barriers include, but
are not limited to: (1) A shortage of affordable and accessible housing
in the community, (2) a shortage of personnel to serve as personal
assistants in the community, (3) a lack of accessible and appropriate
community-based health and dental care, (4) a lack of accessible
transportation, (5) problems and gaps in the mental health service
delivery system, and (6) a persistent bias in Medicaid-funded long-term
care programs that channels resources away from communities and into
institutions. Many States are models of effective planning for Olmstead
implementation. Full implementation of these thoughtful plans could
lead to enhanced integration and participation of people with
disabilities.
Future research on community integration, IL and participation of
people with disabilities also will be influenced by the 2003 report of
the President's New Freedom Commission on Mental Health, ``Achieving
the Promise: Transforming Mental Health Care in America.'' The report
provides six major goals for our nation's mental health efforts that
are directly related to the participation of individuals with
psychiatric disabilities. These goals are (1) Americans understand that
mental health is essential to overall health, (2) mental healthcare is
consumer and family driven, (3) disparities in mental health services
are eliminated, (4) early mental health screening, assessment, and
referral to services are common, (5) excellent mental healthcare is
delivered and research is accelerated, and (6) technology is used to
access mental healthcare and information.
The above-mentioned report shows a mental health system in
disarray. For children and adults with psychiatric disabilities, the
service delivery systems, policies, finances, and
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treatment options are fragmented, confusing, and inadequate.
Unnecessary institutionalization remains a problem, as do the practices
of seclusion, restraint, and forced treatment. Stigma remains a major
obstacle to treatment, and suicide continues to be a major public
health problem. People with psychiatric disabilities are
overrepresented in the homeless population and in the juvenile and
criminal justice systems. Existing policies frequently force parents of
children with psychiatric disabilities to relinquish custody to ensure
that their children receive adequate mental healthcare.
To respond to the challenges described in the preceding paragraphs,
NIDRR research in the area of participation develops and evaluates
strategies for services, interventions, products, and modifications to
the built and social environment that would allow individuals with all
types of disabilities to live and participate in their communities.
These services, interventions, products, and environmental adaptations
differ for specific subgroups of people with disabilities. NIDRR-funded
researchers are among the vanguard of measurement experts seeking to
develop new and improved theories and measures of participation and
community living so that the impact of these specific strategies and
interventions can be more accurately determined.
Accomplishments in Participation and Community Living Research
NIDRR-sponsored research has been associated with a number of
significant outcomes related to the participation of people with
disabilities. These accomplishments are categorized as related to (1)
theories, measures, and methods or (2) interventions, products and
devices, and environmental adaptations.
Research on Theories, Measures, and Methods Has
Addressed the full range of independent living issues,
from the development of conceptual frameworks to policy research, to
research addressing the management needs of centers for independent
living (CILs).
Led to the acceptance of the concept of consumer-direction
and control among a broad population of people with disabilities. This
concept originated among working-age individuals with physical
disabilities, but more recently has been accepted by leadership in both
the aging and developmental disability communities.
Led to the development of new measures of participation
and community integration among people with disabilities. Measures
developed in the past include the Community Integration Questionnaire
and the Craig Handicap Assessment and Reporting Technique (CHART).
Research on Interventions, Products, Devices, and Environmental
Adaptations has:
Led to the development and expansion of a range of
services and programs designed to directly support individuals with
disabilities in their communities.
Helped determine that, from the consumer perspective,
consumer-directed PAS are delivered in a manner that is no less safe
than traditional agency-directed services.
Increased the knowledge base about PAS programs and best
practices among a wide variety of stakeholders, including local, State
and Federal-level policymakers, service-providers, and disability
advocates.
Clarified the extent of PAS use, as well as the unmet need
for PAS in the United States.
Led to advances in treatment options and community-based
supports for individuals with mental illness and psychiatric
disability. These advances include recovery-oriented services and
practices; psychiatric rehabilitation; peer supports and other natural
supports in community and employment settings; supported education
services in higher education, employment services that integrate mental
health and vocational rehabilitation services; psychosocial
rehabilitation; services that are provided by mental health consumers,
and systems of care and wraparound services in children's mental
health.
Led the Alzheimer's Association and the Arc of the United
States to use recommendations derived from NIDRR-funded research to
promote constructive approaches to community care for people with
intellectual and developmental disabilities affected by dementia.
Promoted participation by creating the concept of
universal design, which holds that all products and environments can be
created for use by all people, regardless of their physical or mental
abilities.
Promoted participation by applying universal design
principles to create accessible voting kiosks, ATMs, computers, and
other mass-market products that allow people with disabilities to
participate in their communities.
Promoted participation through the development of
disability-accessibility guidelines for the World Wide Web.
Promoted participation through design and application of a
wide variety of technological products that allow easier navigation of
indoor and outdoor environments by people with sensory disabilities.
For example, ``Talking Signs[supreg]'' technology allows individuals
with low vision to travel more independently in all environments. This
remote infrared technology has been deployed in numerous cities
throughout the U.S., Europe, and Asia. Other NIDRR-sponsored research-
based advances include wayfinding applications, combinations of global
positioning technologies with Braille capabilities, audio descriptions
in theaters, and closed-captioning in public spaces.
Research Agenda
The expected outcome of NIDRR's research efforts, at the individual
level, is the development of new knowledge that can be used to increase
the capacity of people with disabilities to plan and direct their own
lives, choosing among options for maintaining the levels of
independence and social involvement that they desire.
The expected outcome of NIDRR's research efforts, at the systems
level, is the production of knowledge that can be used to improve
options and services for achieving independence and social involvement,
and the supports necessary to realize those options.
Theories, Measures, and Methods
Effective theories, measures and methods to achieve optimal levels
of participation among individuals with disabilities are important
because they:
Improve understanding of the wide range of activities that
may be associated with enhanced participation among people with
disabilities.
Improve tools that measure multiple dimensions of
participation among individuals with disabilities.
Improve the ability to scientifically identify and
evaluate effective services and policies that impact the participation
levels of individuals with disabilities.
By bolstering understanding of the complex meaning of participation
and employing new and improved measures that adequately reflect this
concept, NIDRR will build a stronger foundation of research-based
knowledge upon which participation-focused services and policies can be
based.
NIDRR will continue to promote research that develops and
strengthens theories for understanding and
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promoting community integration, IL and participation, as well as new
methods for measuring these ultimate outcomes. NIDRR will continue to
lead the way in the development of participation and community living
measures. Current measures of participation and community integration
largely have been developed by researchers working in the context of
medical rehabilitation, and have been applied to populations of people
with physical disabilities. Measurement of participation and community
living among people with intellectual or cognitive disabilities
requires emphasis on the development and testing of measures designed
to be applied to populations of people with these types of
disabilities. NIDRR will sponsor research to construct reliable and
valid theories and measures for participation and community integration
of individuals with intellectual, cognitive, or psychiatric
disabilities. These advances will provide a foundation for high quality
research on these issues.
NIDRR also plans to pursue research to develop advanced theories of
disability and participation to capture the complex interaction of
environmental and individual factors. That will require improvements in
the ability to measure the influence of environmental factors on
participation levels of people with disabilities. An increased
understanding of the environment's role will sharpen understanding of
the specific physical or social barriers to be addressed, and the
facilitators on which to build enhanced participation.
Interventions, Products, Devices and Environmental Adaptations
New and improved interventions, products, devices, and
environmental adaptations are important because they:
Improve participation outcomes for all individuals with
disabilities. Improved participation outcomes would include
quantitative increases in the number of individuals with disabilities
living and interacting in the community, as well as qualitative
improvements in the nature and quality of that social involvement.
Provide access to individualized services and supports to
promote participation among all people with disabilities.
Apply conceptually sound theories of societal
participation for specific subgroups of people with disabilities.
Can be tailored to the specific needs of individuals with
physical, sensory, cognitive, or psychiatric disabilities to reduce
environmental barriers to participation.
NIDRR is interested in promoting rigorous research based on well-
developed theories, using validated measures and appropriate methods
that examine the efficacy and effectiveness of interventions and
programs designed to promote community integration. These interventions
may include Federal, State, and local programs, or improved
environmental adaptations or devices that enhance the ability of
individuals to live independently in the community. NIDRR is especially
interested in sponsoring research on programs and interventions that
will (1) Promote participation in educational opportunities over the
life span, (2) enhance access to recreation and transportation, (3)
enhance access to PAS and direct-care providers, (4) promote the
availability of accessible, affordable housing for people with
disabilities, (5) enhance asset-accumulation practices among people
with disabilities, and (6) enhance participation and integration of
parents with disabilities, and families with children with
disabilities.
NIDRR intends to place particular emphasis on research related to
direct supports and services that will enable individuals with
disabilities to have options for participation and to implement their
choices in their environments. The aim of this research would be to
develop best practices for providing supports for people with
disabilities living in the community.
NIDRR also will sponsor research to determine the ways in which
people with disabilities can use applications of universal design to
reach their participation goals. This research will illuminate the
barriers to, and facilitators of product utilization, and will guide
future dissemination and marketing of state-of-the-art technologies.
Thus NIDRR's research agenda in the domain of participation and
community living is designed to:
Strengthen the scientific basis of policies and practices
aimed at enhancing participation among people with disabilities by
providing information and analyses that improve understanding of
participation levels among individuals with disabilities and the
multiple barriers to and facilitators of their participation.
Strengthen participation-related research and practice by
increasing the availability of validated theories, measures, and
methods. These theories, measures, and methods will improve data
sources and estimates, and will enable better identification,
evaluation, and prediction of the factors that facilitate or impede
participation and community living. These improvements will enhance the
credibility of research and thus increase the utilization of research
findings.
C. Health and Function
Overview
Maximizing health and function among people with disabilities is
critical to the achievement of NIDRR's mission and the associated
higher-order goals of employment and community participation.
Functional ability reflects the complex interaction between individuals
and the environments in which they live. Accordingly, NIDRR
conceptualizes and examines issues of health and function at the
systems and the individual levels.
At the systems level, NIDRR-supported research focuses on the
structure, organization, and delivery of healthcare and medical
rehabilitation services. Individual level research focuses on the
development and testing of new interventions that improve functional
and health outcomes for individuals. At the systems level, NIDRR also
studies access to healthcare and rehabilitative medicine, and the
complex delivery systems used for those services.
In conceptualizing health and function research to improve the
lives of individuals with disabilities, NIDRR posits a growing need for
research on medical rehabilitation interventions to improve function
and for health status research to improve overall health and wellness
of people with disabilities.
The Context for Research on Health and Function
NIDRR sponsors research to improve the health and function of
individuals with disabilities, as well as to understand and improve the
system of healthcare services delivery, including the delivery of
medical rehabilitation services.
Individual Level: Ongoing research and clinical efforts have
produced a wide variety of programs, interventions, and products aimed
at enhancing the health and function of individuals with disabilities.
The scope of research in medical rehabilitation is as broad as the
numerous conditions that result in disablement, and may focus on the
onset of new conditions, the exacerbation of existing conditions, or
the development of coexisting conditions. Accordingly, there are
important opportunities for advancements in a range of body systems.
Over the course of the last several decades, neurobiologists have
been advancing the understanding of the
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central nervous system and the complex mechanisms by which cells and
neurons are able to compensate for and potentially heal injuries and
lesions. NIDRR is well positioned to capitalize on these basic science
findings by funding research to develop rehabilitative interventions
that are based on the expanding knowledge of neurobiological processes.
There is continuous research on prevention of secondary conditions
among people with disabilities. Conditions such as pain, muscle
weakness, obesity, cardiovascular de-conditioning, and depression are
especially prevalent for persons with disabilities, to a great extent
because of their sedentary lifestyles. Studies have indicated that
persons with disability are more susceptible to earlier age-related
functional declines when compared to their non-disabled counterparts.
NIDRR will continue to sponsor research that examines the impact of
exercise and activity on the functional independence and overall health
status of individuals with both newly diagnosed and long-term disabling
conditions. Related to this research on the impact of physical activity
on the health and function of people with disabilities are recent
findings on the impact of complementary and alternative therapies.
Interventions such as yoga, acupuncture, martial arts, and reflexology
have enhanced effects on rehabilitation outcomes when coupled with
conventional rehabilitation treatment modalities.
There is also a growing body of research on the use of
pharmacological interventions to improve health and functional
outcomes. There are several examples in treating symptoms of major
brain injuries, including new uses for existing drugs that may be
effective in treating agitation and fatigue and addressing states of
minimal consciousness. New drugs now in testing may show promise for
managing spasticity in spinal cord injury (SCI) and multiple sclerosis
(MS) and pain management in the arthritis population. Research in
medical rehabilitation must remain attuned to pharmacological advances
and be prepared to examine their use with rehabilitative interventions.
Research on health and function also involves research on new
technologies that improve diagnosis and measurement of disabling
conditions, as well as devices to support enhanced function. Under
investigation is the extent to which home-based telerehabilitation
interventions meet current clinical standards. Researchers are looking
at multimedia and virtual reality technologies to minimize pain in burn
treatment and to provide cognitive retraining for individuals after
traumatic brain injury (TBI) or stroke. Examples of other emerging
technological interventions aimed at enhancing individual function
include microelectronic connections between the central nervous system
and muscle groups affected by injury or disease, and artificial
intelligence to enable walkers and wheelchairs to navigate varied
terrains.
All of these research-based innovations that have developed over
the course of the last decade provide the context and foundation for
continuing advances in theories, interventions, and products that will
help promote the health, wellness, and community participation of
people with disabilities.
Systems Level: The complex, ever-evolving healthcare delivery
system in the U.S. plays a major role in the promotion and maintenance
of health by all people, including people with disabilities. People
with disabilities should have access to an integrated continuum of
healthcare services, including primary care and health maintenance
services, specialty care, medical rehabilitation, long-term care, and
health promotion programs.
While health services researchers are increasingly attuned to
racial and ethnic disparities in healthcare, less attention and fewer
resources are devoted to disability-related disparities and the
innovations in policy and practice that might reduce them. Physically
inaccessible offices and equipment, abbreviated appointments, and
physician attitudes are significant barriers to the use of appropriate
preventive services by people with disabilities. The relative lack of
access to healthcare services by people with disabilities is likely to
become an increasingly serious problem as the full implementation of
the Olmstead decision shifts some individuals out of institution-based
healthcare into mainstream health services.
People with a range of disabilities disproportionately experience
depression and other mental health conditions, and there is a
substantial amount of unmet need for mental health services. The NFI
strongly promotes improvements to the Nation's mental healthcare
delivery system for individuals with severe mental illness. People with
all different types of disabilities--not just psychiatric
disabilities--may benefit from increased access to mental health
services.
The population of people with disabilities is heterogeneous in
terms of type of disabling condition, sociodemographic characteristics,
and specific healthcare needs. Researchers must make concerted efforts
to sample and collect data from the wide diversity of people with
disabilities, including racial and ethnic minorities and people in low-
income categories. The healthcare experiences of these doubly
underserved populations are different than the experiences of white,
middle-income people with disabilities.
The relatively small number of studies focusing on healthcare
delivery for people with specific types of disability, sociodemographic
backgrounds, and healthcare coverage, makes it difficult to piece
together a coherent picture of the impact of the healthcare delivery
system on health and wellness of people with disabilities. Given the
relative lack of research resources in this important area, researchers
must work together to synthesize this work to create a coherent body of
knowledge that delineates specific practices and policies that are
either beneficial or harmful to the health and wellness of people with
disabilities. In addition to this synthesis of studies into a coherent
mosaic, there is a need for large-sample, longitudinal research
projects to determine the impact of healthcare systems on the health
and wellness of the diverse population with disabilities. This endeavor
will require increased inter-agency cooperation on health services
research for people with disabilities.
Accurately and appropriately measuring the health status of
individuals with disabilities is critical to our understanding of the
impact of the healthcare delivery system on their health and wellness.
One barrier to accurate measurement of the health status of individuals
with disabilities is the tendency of widely used measures to conflate
functional ability with health. Functional capacity and health are
distinct concepts; disability is not the same as poor health. NIDRR-
funded research has demonstrated that people with lower levels of
functional capacity are, in the aggregate, less likely to report
positive levels of health. Despite this association, a substantial
number of individuals with low functional levels report that their
health is good or excellent. Researchers need measures of health that
do not rely on estimates of functional capacity. The SF-36, developed
by RAND to assess outcomes of medical care, is the most widely used
health status measure in the world. Its holistic conceptualization of
health is generally appropriate, but it is widely criticized by
disability researchers for its tendency to conflate functional ability
with health status.
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Over the course of the last two decades, NIDRR's investment has
been instrumental to the development of appropriate and effective
measures of health and function for people with disabilities. NIDRR-
funded research led directly to the development of the current standard
for measuring functional independence in rehabilitation settings, the
Functional Independence Measure (FIM).
There has been considerable discussion about the problems of
classifying specific interventions in medical rehabilitation, which is
characterized by its overlapping teamwork approach practiced by
physical therapists, occupational therapists, and other allied health
professionals. NIDRR is funding groundbreaking research in this area.
However, the lack of consensus on how to define and measure the
multitude of interventions that take place within the ``black box'' of
rehabilitation is a persistent barrier to a more rigorous and targeted
evaluation of rehabilitation outcomes. The robustness of outcomes
research findings requires that the intervention be delineated
specifically so that it can be replicated or adapted by researchers or
practitioners.
Accomplishments in Health and Function Research
Research on theories, measures, and methods has advanced the field
of medical rehabilitation at both the individual and systems levels. At
the level of the individual, NIDRR has supported research on theories,
measures, and methods that has:
Supported the development of the Functional Independence
Measure (FIM), the most commonly used functional assessment tool in
rehabilitation medicine.
Promoted the conceptual analysis of disability and
functional outcomes as the interaction of the individual with his/her
environment. NIDRR-funded researchers developed, tested, and
implemented the use of the Craig Hospital Inventory of Environmental
Factors (CHIEF) instrument to quantify a variety of environmental
factors that promote or hinder functional independence and community
participation.
Developed computer-assisted methods for efficiently
assessing health and functional status outcomes for individuals with
disabilities.
Developed, tested, and implemented widespread use of
instruments such as the Craig Handicap Assessment Research Tool (CHART)
and the Community Integration Questionnaire (CIQ) to measure community
participation following medical rehabilitation.
Supported development of quality of life measurements that
take a person-centered perspective in evaluating long-term outcomes of
disability.
Developed instruments such as the Walking in Spinal Cord
Injury (WISCI) to measure specific functional activities and mobility
after SCI. This measure has been adopted by the European Clinical
Trials Group in SCI.
Developed information resources such as the Center for
Outcomes Measurement in Brain Injury (COMBI), which provides detailed
reliability, validity, and instructions for using the major outcomes
assessment tools in TBI.
NIDRR research on theories, measures, and methods also has made
many advances that inform the future agenda at the systems level:
Documented that individuals with disabilities use a
disproportionate amount of services from across the healthcare spectrum
and incur higher per capita medical expenditures than do people without
disabilities.
Documented a persistent lack of consistent access to a
broad spectrum of healthcare services by people with disabilities,
including some cancer screenings, primary care, specialty care, and
medical rehabilitation services.
Described and documented a number of systematic Barriers
to healthcare for people with disabilities, as well as the consequences
of those barriers for individuals' health, wellness, functional
ability, and social participation.
Determined that there are a number of healthcare quality
factors that are unique to the population with disabilities, and that
these factors are not reflected in population-based health care quality
tools that are in current use.
Improved the ability of State service agencies and
education departments to meet the needs of children with mental health
disorders by influencing changes in policy and practice regarding
parent participation, and improving State financing mechanisms for
children's mental health.
Developed the conceptual, empirical, and technological
base of the field of psychiatric rehabilitation and promoted widespread
adoption of psychiatric recovery-oriented systems, services, and
practices.
Promoted access to mental health services, including
alcohol and drug treatment services, for adults and children with
physical and/or psychiatric disabilities.
Supported the ongoing translation of the ICF
classification system into the next generation of post-acute measures
of function, performance of activities, and participation.
Supported applications of state-of-the-art statistical
modeling techniques and computer adapted testing methods for bringing
increased efficiency and accuracy to the process of outcomes data
collection.
Achievements in research on interventions, products, devices, and
environmental adaptations have created a basis at the individual level
from which to direct future research. This research has:
Established and maintained model systems programs in SCI,
TBI and burn rehabilitation. These programs have collected longitudinal
data to characterize the population and outcomes of individuals with
these injuries as well as developed new evidence-based interventions to
improve long-term functional, vocational, cognitive, and quality of
life outcomes.
Developed specific exercise protocols designed to
strengthen and enhance flexibility among individuals with severe
arthritis. These protocols have been adopted for use in both the clinic
and home-based setting, but require further evaluation.
Led to the development of novel methods of treating a
number of secondary conditions associated with SCI, including urinary
tract infections, dyslipidemia, cardiovascular disease, and pressure
ulcers.
Developed new computerized technology for the proper
alignment of leg prostheses, to improve the mobility of individuals
with foot amputations.
Developed and tested therapeutic interventions focused on
enhancing functional capacity following stroke. Further, NIDRR-funded
stroke rehabilitation researchers have systematically documented the
natural history of stroke impairment, short- and long-term disability,
and the implications of these findings for rehabilitation practice and
quality of life after stroke.
Developed and disseminated an effective health behavior
education curriculum that is being used by agencies in the U.S. and
internationally to improve the physical activity and recreational
skills of people with intellectual and developmental disabilities.
Developed the conceptual, empirical, and technological
base of the field of psychiatric rehabilitation, and promoted
widespread adoption of psychiatric recovery oriented systems, services,
and practices, including alternative health practices.
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Identified best practices in comprehensive burn care,
focusing on early intervention of rehabilitation to improve
psychological well-being, functional status, and employment status of
burn survivors.
Generated descriptive findings about the nature and
etiology of a wide variety of disabling conditions that have set the
stage for testing innovative interventions and rehabilitative
treatments.
Documented the elevated propensity for persons aging with
disability to encounter issues such as onset of new chronic conditions,
decline of functional ability as a result of changed health status,
diminished psychological well-being and quality of life, and diminished
family and social supports.
Described and documented the dynamic psychosocial factors
that affect community integration and participation of people with
multiple sclerosis.
Developed numerous assistive devices to improve the health
and functional abilities of individuals with disabilities. Examples of
these devices include prostheses, orthoses, communication aids, and
mobility aids.
Supported development of repetitive motion techniques on
the treadmill, to improve stability and mobility of individuals with
SCI and other mobility impairments.
Developed and implemented telehealth and
telerehabilitation initiatives to expand the ability of the organized
healthcare and rehabilitation systems to diagnose, treat, and monitor
ongoing needs of individuals with disabilities.
Developed technological advances such as pressure garment
materials to prevent contractures among burn survivors.
Examined the use of portable hand-held devices to support
cognitive functioning for individuals with TBI and other neurological
conditions.
Developed a product to support gait recovery in
individuals with stroke that has been commercialized and is now sold in
the U.S. and Japan.
Research on interventions, products, devices, and environmental
adaptations at the systems level has:
Demonstrated that a substantial number of people with
disabilities who need medical rehabilitation services and/or assistive
equipment have difficulty accessing them, regardless of whether they
are covered by managed care or fee-for-service health plans. This body
of research consistently indicates that access difficulties occur most
frequently among those reporting the most severe disabilities, those in
the poorest health, and those with the fewest monetary resources.
Demonstrated that a substantial percentage of individuals
with moderate to severe disabilities do not have systematic access to
preventive medicine and screening services.
Led to the adoption of a new policy statement by the
Medical Advisory Board of the National Multiple Sclerosis (MS) Society,
which recommends rehabilitation as a necessary component of quality
healthcare for people with MS at all stages of the disease.
Led to the adoption of the ``Living Well with a
Disability'' health education curriculum by a large health plan in
California that serves 9,500 individuals with disabilities.
Increased the interest and commitment among some State
Departments of Mental Health to adopt recovery-oriented rehabilitation
systems for persons with mental illness.
Research Agenda
At the individual level, NIDRR will fund research that supports the
development and evaluation of new interventions, products, devices, and
environmental adaptations aimed at improving the health status and
functional abilities of people with a wide range of disabling
conditions. Many of these new interventions will address the needs of
people who are aging with disability, with particular emphasis on
minimizing secondary conditions. To aid in the evaluation of these new
interventions, NIDRR also will fund research that leads to the
development of the next generation of valid and reliable measures of
health and functional status among people with disabilities.
These new measures will be applicable in a wide variety of clinical
and community settings, and will incorporate consumer perspectives in
order to assess the extent to which health status and functional
capacity relate to the ability to perform valued activities in the
community. NIDRR will conduct research that identifies effective
methods for translating data from these new outcomes measures into
information that can be used to inform decisions made by consumers,
payers, provider organizations, and clinicians.
At the systems level, NIDRR will fund research that will generate
new knowledge about the systematic causes and consequences of
substandard access to rehabilitation, healthcare, and mental healthcare
services for people with a wide range of disabling conditions. This
research will identify and evaluate the effectiveness of specific
service delivery approaches and reimbursement models aimed at
minimizing physical, social, and economic barriers to the full spectrum
of health, mental health, and rehabilitation services that are needed
by people with disabilities.
Thus, NIDRR's research agenda in the area of health and function is
designed to:
Increase the number of validated new or improved methods
for assessing function and health status.
Increase the number of interventions, products, and
devices demonstrated to be efficacious in improving health and function
outcomes in targeted disability populations.
Increase understanding of the underlying structures and
processes that facilitate or impede equitable access to rehabilitation
and physical and mental healthcare by people with disabilities.
D. Technology for Access and Function
Overview
Everywhere, Americans are using technology to make their lives
easier, more enjoyable, and more productive. Americans with
disabilities, however, depend upon technology for much more than
convenience or a competitive edge. Technology plays a vital role in the
lives of millions of Americans with disabilities by helping them to
overcome physical, cognitive, and sensory functional deficits, thus
enabling them to lead more independent, secure, and productive lives.
In the past, persons with significant disabling conditions often were
considered to lack potential for habilitation or rehabilitation and
were subsequently consigned to institutions or segregated facilities
such as nursing homes, denying them the opportunity to live full and
meaningful lives. In 2004, barely three decades after the birth of
rehabilitation engineering, individuals with significant disabilities
are able to live, often independently, in their own homes, and to
participate in society in meaningful and productive ways.
Advances in science and engineering have had an extraordinary
impact on all areas of disability and rehabilitation. Research has
emerged from a period focused primarily on impairment to a period that
focuses on a broad range of issues of function and access. NIDRR's
leadership in rehabilitation engineering and assistive technology
development has played a major role in creating technology for use in
rehabilitation services, for use by individuals with disabilities to
conduct their daily lives, and to inform policy and adapt environments
to meet the needs of persons with disabilities.
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NIDRR's Logic Model depicts technology as encircling the goals of
sustaining health and function, employment, and participation, because
technology is a critical contributor to successful outcomes for persons
with disabilities in all these areas. This section of the Plan
discusses the societal and scientific contexts of disability technology
research, and describes its applications at the individual and systems
levels. At the individual level, the primary focus is on assistive
technology devices; at the systems level, the areas emphasized include
environmental adaptations and accessible IT. Also included are
instruments for use in medical and rehabilitative interventions, such
as tools for diagnoses, assessments, and therapeutic interventions.
The Context for Research on Technology for Access and Function
NIDRR is well positioned to continue its leadership in
rehabilitation engineering and assistive technology research. NIDRR
maintains an environment in which rehabilitation engineering and
assistive technology research are parts of an institutionalized
continuum that includes related medical, clinical, public policy,
psychological, economic, vocational and social research. NIDRR
continues to promote the value of rehabilitation engineering and
assistive technology research while raising the national conscience
about the value of research relating to people with disabilities.
Advances in basic biomedical science and technology have resulted
in new opportunities to enhance the lives of people with disabilities.
Recent advances in biomaterials research, composite technologies,
information and telecommunication technologies, nanotechnologies, micro
electro-mechanical systems (MEMS), sensor technologies, and the
neurosciences provide a potential wealth of opportunities for
individuals with disabilities and should be incorporated into research
focused on disability and rehabilitation.
NIDRR supports technology-related research at both individual and
systems levels. At the individual level, assistive technology is used
to enhance the physical, sensory, and cognitive abilities of people
with disabilities and to assist them to participate in and function
more independently in the home, at work, in recreational settings, and
at cultural and religious events. At the systems level, technology R&D
activities are applied in ways that enhance community integration,
independence, productivity, competitiveness, and equal opportunity by
mitigating or eliminating barriers found in large social systems such
as public transportation, telecommunications, IT, and the built
environment.
Assistive technology often is described as either ``high tech'' or
``low tech''. High tech devices generally are complex and often
expensive to produce and use, while low-tech devices often can be made
at home or in a hobbyist's workshop, are simple to create and operate,
and are usually less costly. One NIDRR researcher frequently states
that what is needed is ``not high tech or low tech, but the right
tech'' to meet the needs of a specific individual.
Most assistive technology for people with disabilities falls into
the category of orphan technology because of the specialized nature,
limited demand, and consequent limited markets. This translates into
reduced economic rewards for manufacturers. Strategies to address the
problem of small markets include universal design and capitalizing on
the growing recognition that many improvements intended for people with
disabilities serve similar functions for others. For example, closed
captioning is useful to all in noisy environments like airports, and in
improving English literacy; curb cuts improve access for people pushing
baby carriages or luggage; and voice recognition technologies are used
throughout the Nation's telecommunications systems.
Consumer participation in rehabilitation engineering and assistive
technology research is vitally important. Without end-user input,
products tend to be developed in a vacuum; invariably, such products
miss critical elements of design that facilitate adoption and
successful use by persons with disabilities. The incidence of
abandonment of assistive devices has been distressingly high throughout
the history of the field. There appears to be a variety of reasons for
abandonment, including: Poor fitting; mismatch to the user's needs;
inadequate training in use of the device; equipment failures; objection
to size, appearance or cumbersomeness of the device; and individual or
cultural beliefs and values. Inherent in poor design and mismatch, in
particular, is the paucity of customer reference or consumer
involvement at each level of product development. In order for products
to gain widespread acceptance and adoption, there must be detailed and
exacting analysis of user feedback at each stage of product evolution,
especially during the earliest stages of development. To continue use
of the device, the consumers must find that the functional gains
brought by the device outweigh the various inconveniences.
In sum, the principal function of technology research is to support
the end-user outcome of participation, including employment, community
integration and independent living, and the maintenance of health and
function.
Accomplishments in Technology for Access and Function Research
The outputs of recent NIDRR-supported research, along with recent
advancements in the field of technology as a whole, serve to describe
the state-of-the-science and to indicate the most promising areas for
future NIDRR investments.
Universal design principles have been incorporated into IT systems
to create accessible public information kiosks, electronic voting
systems, ATMs, postal kiosks, and airport information systems.
Universal design principles can be applied to the built environment,
IT, telecommunications, transportation, and consumer products. These
systems are basic to community integration, education, employment,
health, and economic development. The application of universal design
principles at each step of the R&D process would incorporate the widest
range of performance on human engineering factors into technological
systems. Universal design applications may result in the avoidance of
costly retrofitting, a wider market base, and cost stability or
reduction over time. NIDRR has taken a leadership role with regard to
the development and promulgation of universal design principles that
can be applied to the built environment, telecommunications, IT,
transportation, consumer products, and the World Wide Web.
The IT revolution is fundamentally altering the way Americans work,
purchase goods and services, communicate and play. Today, one can
access information using any number of electronic devices and networks,
including computers connected to ``plain old telephone lines'' (POTS),
televisions connected to cable or digital satellite networks, cellular
telephones, or wireless hand-held personal digital assistant devices.
Unlike earlier information technologies (i.e., print, radio, telephone,
television and telefax), mobile communications networks, the Internet,
and the World Wide Web did not seep into our daily lives gradually--
rather, they exploded onto the scene. While the economic impact of this
transformation has not been fully evaluated at either the individual or
systems level, it is significant. The
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ubiquitous nature of IT brings with it a host of opportunities as well
as challenges--especially for people with disabilities.
NIDRR, through its network of grantees, has provided critical
expertise and leadership for policy, regulatory and standards
development related to wheelchairs, wheelchair restraint systems, and
wheelchair seating systems. Specifically, NIDRR-sponsored researchers
have created standards for wheelchair safety in motor vehicles, for
docking devices for public transit, and for measuring and testing
wheelchair seating component strength, seating posture, and cushion
design. Other NIDRR-sponsored research resulted in the development of a
manual entitled ``Landmarking Manual for 3-D Anthropometry'' to enhance
and expand a prototype database of individuals who use both powered and
manual wheelchairs.
NIDRR researchers identified problems with reproducibility of the
standard measure (ANSI C.63.19) used by the Federal Communications
Commission (FCC) as a basis for its rule on wireless phones and hearing
aids, and developed consumer guidance for hearing aid wearers. NIDRR-
sponsored research resulted in a consumer-tested tool for evaluation of
TTY error rates over digital wireless phones. This tool has been
transferred to industry, where it is now the industry standard
measurement tool. The first web guidelines (Mosaic Access Guidelines,
Unified HTML Accessibility Guidelines) were developed and adopted by
the World Wide Web Consortium (W3C) as the starting point for their Web
Content Accessibility Guidelines work. Representatives from several
RERCs have been working with the International Committee for
Information Technology Standards (INCITS) on the development of the V2
interoperability standards for augmentative and alternative
communication, assistive technology, and IT.
Related to technology for hearing, NIDRR researchers developed
instrumentation for the objective measurement of certain types of
tinnitus. The rate of growth of evoked otoacoustic emissions with input
signal level is abnormal in the frequency region of the tinnitus.
Differences in the growth functions provide a means for identifying and
measuring different forms of tinnitus. The instrument can be used to
obtain objective measurements of tinnitus generated in the auditory
periphery.
NIDRR's technology research is well situated to contribute to the
realization of goals in the three outcome areas. Research on technology
to support employment has led to the creation of a system for applying
ergonomic technologies to accommodate disabled and elderly workers,
developed tools for evaluating workers and jobs, and developed
ergonomic solutions for disabled workers.
Research on technology to support health and function led to a
simple yet highly functional prosthetic hand for children, and a novel
transtibial prosthetic socket fabrication technology that greatly
reduces the time and money needed for manufacture of prostheses. Other
research has produced novel phone features such as ``Touch One to
Call'' and ``Flip to Call'', which allow individuals who have
significant cognitive impairments to use mainstream phones; an
instrument for cost-effective early detection of hearing loss based on
evoked otoacoustic emissions in the ear canal; and a technique for in
situ measurements of hearing aid distortion, internal noise and other
forms of interference in a hearing aid.
Research on technology to support participation and community
living resulted in the design of an affordable universally designed
kitchen, an adjustable height bathroom vanity, universally accessible
laboratory furniture, and an easy to use screen door handle; and also
created the first cross-disability accessible building entry system.
Implemented first in public housing in San Francisco, that system
allows access to the building directory and entrance security by
individuals with low vision, blindness, physical disabilities, hearing
impairments, deafness, and reading disabilities.
Research Agenda
NIDRR will continue to further the development and application of
universal design principles to promote the full participation of people
with disabilities in mainstream society. As the American population
ages and the associated prevalence of disability increases over the
course of the next 20 years, the importance and visibility of universal
design applications will be greatly enhanced. These applications will
include universally designed homes, buildings, vehicles, communication
devices, media interfaces, entertainment venues, and other advances
related to all aspects of life. These products and environmental
adaptations will be universally designed for use by people of all
ability levels, so that people can continue to lead active lives in
their communities following the occurrence of trauma or age-related
disabilities.
NIDRR will sponsor research to improve and build upon disability-
specific products and environmental adaptations that have been
developed to enhance participation and community integration. That will
include the improvement of current augmentative communication
technology so that it is smaller, easier to use, and provides a more
life-like human voice for its users.
NIDRR research will address the principal function of technology--
to support the end user outcome of participation. This requires
research on techniques to enhance use and reduce abandonment by
emphasizing consumer investment at each level of product development,
including studies that illuminate potential population-specific factors
(e.g., behavioral patterns, cultural and societal values, or other
variables). Because most assistive technology for disabled individuals
falls into the category of orphan technology and is of a specialized
nature, researchers often do not consider this cost-effective product
development and employers sometimes do not consider this as a cost-
effective mechanism for retaining injured workers or accommodating
potential employees.
NIDRR will sponsor research that builds upon an understanding of
the impact of economic factors on technology development, production,
availability, and use, including studies that enhance understanding of
the determinants of technology development and transfer, and use within
specific industries or community environments. All of these factors
must be considered within the realm of technology R&D, and in some
instances across other areas of the NIDRR research agenda. Increasingly
R&D researchers will be required to pay attention to environmental
issues, societal factors, and cultural norms during the research and
product development process, particularly in an environment where
globalization influences outcomes for the technology market and
changing demographics dictate technology needs. NIDRR intends to
benefit from this international research agenda by providing the
opportunity for researchers around the world to collaborate on product
development and to examine technology needs through the lens of the
international community. This creates a critical mass with related
scientific expertise, leading to possibilities for new discoveries and
information that otherwise would not benefit people with disabilities
in this Nation.
NIDRR's research agenda in the area of technology for access and
function is designed to:
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Strengthen the science basis of rehabilitation engineering
and assistive technology through the development of theories, validated
measures, and appropriate research methods for the identification and
solution of problems to be addressed through technology.
Increase the number and availability of empirically
validated products, devices, or environmental adaptations that promote
increased mobility, interactive control and manipulation of relevant
features of the environment as well as access to information and
technological communications systems by people with disabilities to
promote independence in the home, community, and workplace.
Increase the number of empirically based standards for
products and devices and the built environment to ensure safety,
accessibility, and usability by and for people with disabilities.
E. Disability Demographics
Overview
In carrying out its statutory mandate to work with other Federal
agencies to produce demographic and statistical data describing the
population of Americans with disabilities, NIDRR has continued to
support important research in disability demographics. Good demographic
data are a critical component of NIDRR's broader mission of supporting
research that contributes to improvements in the lives of people with
disabilities.
Demographic data contribute to NIDRR's mission by helping to:
Allocate NIDRR resources among competing topical areas.
Inform policy within NIDRR and within the Federal
government as a whole.
Identify potential changes in the characteristics and
needs of the disabled population.
Understand changes over time in disablement.
Inform service delivery.
Plan research to address current and emerging needs.
Inform consumers and their families and advocates.
NIDRR researchers strive to understand the processes by which
individuals vary in participation and, when appropriate, to foster
strategies or interventions that may help bridge the gap between
preference and feasibility in an existing environment. The dynamic
nature of ability and the continuing advances in technology, policy,
and human resources practices offer great promise toward maximizing
participation of individuals with disabilities in all areas of life.
This chapter clarifies NIDRR's work in the context of disability
demographics; and describes past activities and achievements in
demographic studies. Examples of achievements in this area include: the
establishment of a Disability Statistics Center; elucidation of the
complex concept of an ``emerging universe of disability'; and
delineation of problems and gaps in the current disability demographics
effort. The chapter further identifies target areas for priority
attention and presents a future agenda for NIDRR.
The Context for Research in Disability Demographics
Many organizations continue to collect important information about
individuals with disabilities. At least five major national surveys are
in existence, along with untold numbers of minor surveys and databases
related to the use of specific programs and surveys.
An overarching concern in disability demographics is the assessment
of the intersection of the individual and the environment. At the
individual level, one may note varying degrees of function, variation
in demographic factors, and variation in preferences. National datasets
focus on measurements that allow one to describe the individual in
isolation from his or her surroundings. At the environmental level,
researchers are beginning to explore measures of barriers and
facilitators to participation. Measures of participation vary, although
sources such as the National Health Interview Survey/Disability (NHIS-
D) and the Survey on Income and Program Participation (SIPP) move
toward evaluating the gestalt of social performance.
A lack of standardized definitions, terminology, coding,
classification, and measurement of disability and functioning often
limits generalization of research findings. Extending use of research
findings or population trends to inform policy or clinical
interventions is limited due to the difficulty of extrapolating
knowledge about disabilities from a disparate range of data sources,
classification and coding systems, and measures of disability. For
example, it is important to estimate future potential demands on
rehabilitation systems, but existing population data sources do not
adequately provide for planning, development, and evaluation of
rehabilitation services and population trends. The ICF, which is
described elsewhere in this plan, is a coding system that promises to
allow the assessment of disability as a dynamic interaction between the
person and the environment.
NIDRR's mission and its measurement tools are complicated by the
interaction of static and dynamic variables that describe the
background of disabilities. For example, people age, health changes,
economic circumstances vary, and accidents occur. Point-in-time data
sources may describe facets of disability, if enough questions are
asked, but the environmental context often is absent.
A range of researchers and consumers of data have noted the problem
in obtaining valid and reliable data about disability prevalence and
its consequences. For policy purposes, the Census is a critical
resource, as is the American Community Survey (ACS). Federal, State,
and local planning underscore the role of the Census. Nonetheless, as
noted by the NCD, there are methodological problems with the measures
used in the Census.
Descriptions of the Population With Disabilities From Existing Surveys
Due to the variety of measurement tools for disability, there is no
simple answer to the question of how many people with disabilities are
living in the United States. Overall estimates of the prevalence of
disability in key national data sources range from five or six percent
up to more than 20 percent. For planning purposes, policymakers,
advocates, and the media often cite the figure of 54 million Americans
with disabilities.
Measures of disability in Federal surveys reflect a variety of
needs across agencies for gathering such data. The ACS and the SIPP of
2002, both produced by the U.S. Census Bureau, reported that the
prevalence of disability among males from 18 to 64 years of age ranges
from 13.5 percent (ACS) to 14.8 percent (SIPP). Also, for example, the
prevalence of disability among females from 18 to 64 years of age
ranges from 13.4 percent (ACS) to 20.1 percent in the SIPP. For females
65 years of age and older, the ACS reported a disability prevalence
rate of 43.5 percent while the SIPP reported a 50.4 percent rate. Males
age 65 and older had a 41.0 percent rate of disability according to ACS
data and 40.4 percent according to the SIPP.
It must be noted that each of the national surveys is tied to a
program mandate other than the estimation and characterization of
disability, especially as it is presented in the NIDRR paradigm. Major
data collections
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generally are related to health status, employment status, benefits
recipient status, and program usage. Thus, it is understandable that
they use varying definitions of disability and sample parameters.
Measures of severity of disability are critical for purposes of the
Act. Each of the national datasets can be used to estimate the
prevalence of significant disability. Generally, limitations in
activities of daily living (ADLs)--for example, bathing, eating, and
getting dressed--reflect the greatest severity, with limitations in
instrumental activities of daily living (IADLs)--cooking, shopping, and
managing money--and in working also are components of severity. For
working-age adults, working at a job or business is often a major life
role, and work limitation figures show the impact of disability on the
ability to work. Overall trends regarding employment and disability
have emerged from various data sources. Generally, disability is
associated with lower labor force participation and earnings.
Review of the NHIS, SIPP, and Census indicates variations in
estimates, reflecting methodological differences such as question
wording, data collection, and coverage. These three data sources were
examined for prevalence estimates of need for help with ADLs or IADLs
and work limitations among adults aged 18 through 69. In 2000, the NHIS
estimated 1.8 percent of the population needed help with ADLs, the SIPP
reported 3.8 percent and the Census reported 9.0 percent. For IADLs,
the NHIS estimated 4.2 percent of the population needed help, the SIPP
estimated 6.2 percent and the Census estimate was 9.8 percent. Looking
at limitations on work, the NHIS provides estimates of limitations in
ability to carry on work and other age-appropriate major activities.
The SIPP and the Census also measure what are frequently called work
limitations, with the Current Population Survey (CPS) sometimes being
used as a source of numbers on ``work disability.'' Again, there is
variation in the questions on these surveys. Prevalence estimates for
work limitation from the NHIS, the SIPP, and the Census were 2.6
percent, 8.6 percent, and 11.9 percent, respectively.
Measures of self-care, and the need for personal assistance or
technologies, provide rich data for understanding more severe
disability. Exploration of such needs also highlights cultural and
socioeconomic variations in access to help. Across data sources that
measure need for help with personal care, such as the NHIS and the
SIPP, there are consistent trends showing that increasing age is a key
factor in need for assistance. Thus, aging is strongly correlated with
disability and with the need for functional supports including
technology and environmental access. Predicted changes in the
demographics of the general population will have substantial impact on
the distribution of disability and the need for specialized
technologies to assist individuals with disabilities. The U.S. Census
Bureau has projected substantial increases during the next several
decades in the percentage of the general population ages 65 and older.
Emerging Universe: Population Demographics and Disability
In its 1999-2003 Long-Range Plan, NIDRR noted a phenomenon it
called an ``emerging universe of disability.'' The emerging universe
was defined by changes in the distribution of disability according to
demographic characteristics. This ``universe'' encompassed changes in
the age, ethnic composition, income, education, and immigrant status of
the population, as well as the appearance of new impairments, and
different etiologies and consequences of existing disabilities.
Research supported by NIDRR has tended to validate this construction,
and to provide a description of the emerging universe.
As noted earlier, certain trends are common across national data
systems that measure disability. Individuals with disability are more
likely to be older, less educated, unemployed or out of the labor
market, reliant on public as opposed to private health insurance, poor
or near poor, and black or Native American as opposed to white or
Asian. In addition, there is a geographic imbalance, with disability
rates highest in the South.
Poverty as both an input to disability and an outcome of disability
requires better understanding. As an underlying variable, poverty may
discourage full social participation by people who are from minority
backgrounds and have disabilities. As Fujiura and his colleagues write,
``across all ethnic/racial and age cohorts, rates of disability were
higher among low income households; above the low income threshold,
group differences were greatly attenuated. Black and Hispanic children
with a disability lived disproportionately in low-income, single-parent
homes.'' (Fujiura, 2000) One must disentangle economic, health, and
social risks and policies to fully understand the impact of disability
on persons from diverse backgrounds. The flux of the general
population, due to increasing diversity, immigration, the growth of the
Hispanic population, and the graying of the baby boom generation,
presents challenges to existing service systems. Emergent health
conditions are yet another factor that introduces complexity.
Ultimately, NIDRR researchers will need to evaluate the impact of all
of these factors on the equalization of access, opportunity, and
successful outcomes for people with disabilities in fulfilling a range
of social roles.
Accomplishments in Disability Demographics Research
Disability Statistics Center (DSC)--NIDRR has long funded
a DSC as a resource for researchers, policymakers, service providers,
consumers, and others. That investment has yielded a number of key
reports about the status of individuals with disabilities and their
lives. In addition, through its investment in a statistics center,
NIDRR has played a significant role in C-B by encouraging disability
researchers to understand and analyze demographic data.
Emerging Universe of Disability--Description and increased
understanding of the emerging universe of disability, which refers to a
disabled population that is shaped by several elements including
demographic changes in age, immigrant status, and other socioeconomic
factors; new types of conditions; consequences of treatments of
existing conditions; and differential distribution of conditions and
their consequences. NIDRR researchers' work in examining and explaining
this phenomenon has helped to increase attention in the last six years
on the unique needs of this ``emerging universe,'' including a focus on
cultural and economic factors affecting disability.
Publications of Disability Data--In addition to reports
from its DSC, NIDRR has funded a series of Chartbooks that present
important data in formats that are accessible to those who are not
researchers. Most recently, NIDRR has published a Chartbook on Mental
Health and Disability.
Improved Measurement--NIDRR has been a key player in the
development, dissemination, and adoption of the shift in
conceptualization of disability from a medical to a sociomedical model.
As part of that work, NIDRR grantees have contributed to the
development of improved survey questions that measure issues of health,
well-being, and participation as they relate to individuals with
disabilities. In addition, NIDRR has played a
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significant role in the development of the ICF that offers potential to
facilitate better understanding of individuals with disabilities across
a variety of disparate data sources.
Primary data collection--NIDRR supports data collection in
a variety of venues. Through its model systems, NIDRR collects data
that addresses the efficacy of a variety of rehabilitation methods.
NIDRR grantees have collected population-based data that describe
specific populations such as individuals with MS or other conditions.
Recently, NIDRR designed and funded a national survey regarding the use
of and need for assistive technologies.
Interagency collaboration--Through its leadership in the
ISDS and other mechanisms, NIDRR has been a leader in promoting the
collection of data about individuals with disabilities using a variety
of Federal surveys. NIDRR has provided both financial and intellectual
support for such efforts.
Research Agenda
NIDRR's performance goals in disability demographics are intended
to increase the ability to describe the characteristics and
circumstances of people with disabilities and their family members by:
Improving the ability to collect disability data through
the joint development of a standard nomenclature and methodological
standards, including sampling, in collaboration with other Federal and
non-Federal entities.
As a key objective, NIDRR will continue to support efforts that
utilize multiple sources to examine the current state of affairs and
trends that allow the projection of future needs. Existing data sources
are sometimes contradictory, suggesting an intermediate need to
evaluate the reasons for the inconsistencies. No one current source can
provide all the important information needed about key inputs such as
PAS, assistive technology, environmental facilitators and barriers, and
their interactions. In the absence of a valid and reliable national
disability survey, meta-analysis threads together the best available
sources of topic-specific data.
In conjunction with other Federal partners, NIDRR will support the
methodological work that yields the tools needed to implement a
national survey of disability across the life span. The 1994-95 NHIS on
Disability is a good model for future efforts, with the necessary
addition of consumer experts to evaluate the content areas. Of note is
that efforts to develop a national disability survey will be of great
value even if such a large survey cannot be fielded in the foreseeable
future. Each component of a cohesive national survey will have utility
in surveys that are agency or mission specific. Resolution of complex
sampling issues will benefit any survey that must include a
representative proportion of individuals with disabilities. Development
of topical modules with reliable and valid measures will yield
instruments that can be used in a variety of data collections so that
information is available about varying subgroups or the interaction of
a variety of factors.
Enhancing the understanding of the number and
characteristics of people with disabilities through targeted studies of
existing data.
Through much of its research portfolio, NIDRR will continue to
support secondary analyses that lead to understanding of the basic
life-cycle events and experiences of people with disabilities. Parsing
the population of people with disabilities through cross-tabulation
with other demographic variables will continue to be a focus. Linking
the national and smaller data sources will be a priority. In the near
and mid term, NIDRR will continue its work to evaluate and analyze
existing data.
Improving the science of disability demographics by
developing and/or improving the measures of the interaction between
technology and the physical environment, the social environment, and
social policy as they affect people with disabilities.
NIDRR will stimulate the development of new measures of the
interaction between technology and the physical environment, the social
environment, and social policy. Such data are important for evaluating
policies, including those enumerated in the NFI. Researchers must
develop measures and indicators to assess the impact of environmental
barriers and facilitators and encourage widespread use of these
measures to evaluate how technology enables people with disabilities to
succeed in school, work, and community and lead more productive and
rewarding lives.
The ultimate goal of NIDRR's disability demographics effort is to
generate new information that can be used by intermediate and intended
beneficiaries who are working to identifying and eliminate disparities
in employment, participation and community life, and health and
function. Personal care, work, culture, and health are several of the
rich areas that NIDRR and its grantees have studied. First, the concern
with data threads through virtually all components of the study of
disability. In order to understand needs and impacts, and to evaluate
outcomes, quantitative analyses play a key role. In addition, one must
often consult multiple sources of data to develop range estimates or
compare trends. NIDRR has long funded studies that mine data to address
the full range of social, health, and economic facets of disability and
that compare findings across data sources. There are significant
correlates with disability, such as aging, and there are a variety of
links between disability and culture, race, and ethnicity. Supporting
multiple sources for examining the current state of affairs for people
with disabilities will provide important data that can be used to
advance many areas of disability and rehabilitation research.
Research has identified gaps in data, such as the sparse
measurement of the interface between individual and environment. NIDRR
will nurture the methodological work that will address those gaps.
Along with improved measures, there is much to be done to address
problems in sampling and data collection. Research must document and
evaluate the effects of long-term impacts of interventions to
facilitate participation. In particular, research must address
geographically and ethnically diverse populations to ascertain
differences in needs and effects.
To be useful for policy, research, programs, and services, data
must be grounded in an appropriate organizational framework, such as
the ICF. The ICF is a scheme organized around function, activity,
participation, and environmental context. To evaluate the potential
uses of the ICF, a variety of measurement tools and data systems must
be examined in addition to further evaluation of the implications of
the classification system for U.S. populations.
II. Capacity Building
Overview
This chapter addresses a critical research building block, C-B,
recognized as one of the three short-term arenas through which NIDRR
achieves its goals. An important function of this chapter is to define
C-B and its key dimensions in a context that reflects NIDRR's mission.
The following sections describe the multidimensional aspects of C-B,
provide a brief review of selected NIDRR C-B accomplishments, and
discuss future directions and specific goals and objectives in C-B.
[[Page 8193]]
Definition of Capacity Building
As illustrated in the Logic Model (see Appendix 2), C-B is
foundational for NIDRR's agenda. NIDRR C-B includes three major
components: (1) Improving and building a larger and better quality
supply of individuals to conduct research, (2) building a research
infrastructure at institutions to carry out research and related
activities, and (3) increasing the ability of consumers to interpret
and use research and to play an active role in the research process.
At the individual level, NIDRR focuses on C-B to ensure a source of
researchers to carry out the research agenda, and to enhance
researchers' ability to generate useful knowledge. NIDRR historically
has sought to increase the number of individuals from underrepresented
groups in this effort, particularly those with disabilities. At the
organizational or systems level, NIDRR C-B supports the framework for
carrying out individual level research work. At a systems level, all
NIDRR programs may be said to involve C-B, in that NIDRR funding is
intended to increase the capacity of the field to conduct high quality
research directed at the long-term goals and objectives identified in
the Logic Model. Another important dimension of NIDRR C-B is the
development of strategies to assist individuals with disabilities and
their families, as well as practitioners, to use research findings to
assist with choices of interventions and improve consumer involvement
in the research process. This process begins with research design and
extends to implementation, evaluation, and dissemination.
Context for Capacity Building
NIDRR's principal statutory mandate for training is to support
advanced instruction for researchers and service providers. Consistent
with this mandate, the 1999-2003 NIDRR Long-Range Plan defined C-B as
multidimensional and involving training for those who participate in
all aspects of the disability research field, including scientists,
service providers, and consumers. NIDRR also has a mandate,
strengthened in the 1992 amendments to the Act, to train peer
reviewers, particularly consumers, and to train consumers to apply new
research knowledge and to use assistive technology.
Individual Level
At the individual level, NIDRR's current C-B activities focus
primarily on support for individuals, most of who already have selected
research as a career, and have completed doctoral studies. Both the
Fellowship program and the ARRT program provide support to individuals
who fall within this category. While this support assists with
developing careers of young investigators, it may not be optimal for
supporting other research C-B, particularly with regard to recruitment
and career development for individuals with disabilities or those from
underrepresented racial and ethnic populations. NIDRR acknowledges the
need for supporting increased development of research as a career at
the secondary school and undergraduate educational levels, particularly
focusing on students with disabilities and those from diverse cultural
groups. NIDRR will look for opportunities to partner with other Federal
agencies on research initiatives in this area.
Systems Level
NIDRR has several program mechanisms by which it funds C-B. The
programs include the ARRT program, Fellowship program, NIDRR Scholars,
Minority Development/Section 21 program, RRTCs, and RERCs.
ARRTs provide research training that integrates disciplines,
teaches, and enhances research methodology skills, and trains
researchers in disability and rehabilitation science. These training
programs operate in interdisciplinary environments and provide training
in rigorous scientific methods.
The Fellowships augment scholarly careers in the field, and
function in an integrative capacity to define new frontiers of
disability and rehabilitation research. This program provides
opportunities for interaction among the fellows and for exposure to
established researchers and policymakers. Additionally, fellows have
the opportunity to participate in an annual research dissemination
program where their findings are presented and discussed with research
experts.
The NIDRR Scholars program recruits undergraduates with
disabilities to work in NIDRR-funded research centers and to
participate in research activities that expose them to disability and
rehabilitation research issues, while at the same time providing work
experience and income. This program is an innovative approach aimed at
generating interest in research careers for individuals with
disabilities and other underrepresented populations.
The Minority Development program focuses on research C-B for
minority entities such as Historically Black Colleges and Universities
(HBCU) and institutions serving primarily Hispanic, Asian, and American
Indian students. Program administration activities include strategies
to assist minority entities with networking activities focusing on
collaboration, exchange of expertise and advanced training.
Training activities conducted by funded entities such as those
participating in the RRTC and RERC programs capitalize on the existing
critical mass of expertise and knowledge to provide:
Experiential and academic training for researchers and
clinicians at the undergraduate, graduate, and post-graduate levels,
including continuing education activities.
In-service training for rehabilitation practitioners.
Training for consumers, their families, and
representatives in implications and applications of new research-based
knowledge.
Accomplishments in Capacity Building
NIDRR has built capacity for research in a number of ways. Most
obvious is its investment in C-B programs to increase the skills of
qualified researchers in the disability and rehabilitation field. The
NIDRR-supported programs also have had the effect of increasing the
numbers of disability researchers who are individuals with disabilities
or members of minority populations. The ARRT program, while intended to
promote research contributions in the long term, focuses primarily on
increasing the number of individuals qualified to conduct
rehabilitation research. These may include professionals in clinical
settings who wish to sharpen their research skills through institution-
based training programs. NIDRR has funded 29 programs under this rubric
since 1992. The Fellowship program, while encouraging individuals to
increase their expertise in research through the fellowship experience,
focuses directly on promoting contributions to the knowledge base.
There have been more than 200 fellows funded since the inception of
this program with the first ``class'' in 1983. The fellowship
experience allows for an intensely focused one-year research activity
that is investigator-initiated and involves independent research. This
fellowship program has resulted in numerous peer-reviewed journal
articles, books and book chapters, as well as refinements in
instruments originally developed in other settings.
Most of those who have received funding under these two programs
have remained in the disability and rehabilitation research field. In
recent years, there has been a ``progression'' from those who received
structured mentoring under the ARRT program to their place as full-
fledged principal
[[Page 8194]]
investigators in NIDRR centers or other programs. However, the
fellowship opportunity allows for the support of individual
researchers, including those not based at universities, and the
flexibility of this approach and the camaraderie engendered in this
program have received considerable praise from former participants.
NIDRR has made a major investment in the infrastructure of research
through development of the model systems programs in SCI, TBI, and
burn. These model systems have made major advancements in the capacity
to conduct care for individuals with these conditions. Models systems
also have contributed to C-B by putting into place a system for
conducting multicenter trials.
Future Agenda
The capability to conduct first-rate research depends on a
commitment to providing opportunities for learning the multiple skills
required for designing scientifically sound studies, selecting
appropriate research methods, analyzing data, and interpreting and
reporting findings. NIDRR intends to support C-B activities that
incorporate training in the application of research findings to the
real-world needs of people with disabilities and the entities that
impact their lives, including policymaking. Training aimed at
transferring research findings into practical use is critical for C-B
at the organizational and individual levels. However, the training must
take into account scientific advancements across relevant disciplines,
the state-of-the-science, the emerging universe of disability, cultural
diversity, and the changing demographic profile of the Nation;
otherwise this training is no longer relevant and cannot contribute
effectively to research C-B.
NIDRR supports diversification initiatives and training that will
attract and increase the participation of researchers, particularly
individuals with disabilities and those from diverse cultural
backgrounds, and will provide them with high level preparation. NIDRR
will place increased emphasis on institutional C-B and building
research infrastructure, in addition to developing a plan of evaluation
of C-B. NIDRR C-B will extend to increased training for KT of research
and the expansion of multidisciplinary research.
NIDRR has invested in C-B programs to increase the number and
skills of researchers qualified to work in the disability and
rehabilitation field. There are a number of external factors that may
affect the success of an effort to build capacity in research,
including the anticipated availability of funding for research; the
potential for increased attention to preparation for service delivery
at the expense of research knowledge and skill building; and the
changing demographic profile of the student, professional, and
disability communities. Understanding these issues via research
activities can inform training and practice needs, and help to ensure
that policies are sensitive to these concerns.
Thus, NIDRR intends to:
Enhance the capacity to solve problems in creative, state-
of-the-art ways by encouraging researchers from different cultural,
racial, and academic backgrounds to conduct culturally-competent
research in new settings that represent the contextual experiences of
individuals with disabilities and stakeholders.
Enhance cross-disciplinary and advanced research training
opportunities in disability and rehabilitation-related fields for
rehabilitation professionals and qualified individuals, including
individuals with disabilities and individuals from minority
backgrounds.
Increase the capacity of persons with disabilities, family
members, and advocates to understand and use research findings through
training and participatory research experiences.
Strengthen its research portfolio by increasing the number
and type of partnerships with Federal and non-federal research and
development agencies that conduct clinical trials and experiment with
innovative approaches to R&D infrastructure development.
Various projects have been funded to study the cultural and
contextual nature of disability experiences. These projects may help in
training the field to design its research efforts using a framework
different than the traditional view of disability, but also may put
forth new ways in which disability research is conducted. For example,
a recent research priority focused on generating greater emphasis on
promoting collaboration between minority and non-minority entities and
examining the implications of traditional methods, models, and
measurement for traditionally underrepresented populations. The
changing profile of the disabled population will require intercultural
competence, and engaging collaborative research is one approach to
meeting those needs. Essential to this process of improving
collaboration is the necessity to identify factors that are effective
in facilitating collaborative research endeavors across disciplines and
the research community, including partnerships between minority and
majority entities and relevant disciplines. The community-based
research initiative, which fosters partnerships between academic
institutions and disability organizations and advocates, illustrates
this point.
Other priorities in examining the contextual nature of disability
include studies that illustrate the influence of the intersection of
the person and environment; exploration of context and culture with
regard to specific disability populations; and topics such as assistive
technology, disability rights, health promotion, family relationships,
and community reintegration. Adding research that examines the
evolutionary processes of policy, science, practice, and business or
clinical culture can be an important element in creating a better
understanding of the factors that shape both professional and
disability experiences. Preparing researchers to examine environments
where advanced technology, emerging disabilities, economics, and other
factors influence training, practice and rehabilitation outcomes can
help to improve the development, planning, implementation, and
evaluation of programs to promote disability rights, health
maintenance, family relationships, and community reintegration. NIDRR
anticipates continued leveraging of the strong base of activity of
NIDRR's RRTCs and RERCs serving as centers of excellence in
rehabilitation research, to further enhance programmatic C-B through
these centers.
III. Knowledge Translation
Overview
The KT process actively engages disability researchers, researchers
from other disciplines, service providers, policymakers, and persons
with disabilities and their families in the interchange, synthesis and
application of rehabilitation research knowledge. KT activities are a
central part of NIDRR's mission and provide an important pathway for
improving the quality of life for individuals with disabilities.
Outlining a central role for KT in this Plan is consistent with NIDRR's
authorizing statute as well as the expressed interests of stakeholders
collected throughout the long-range planning process. It also builds
upon the strong history of KDU activities conducted by NIDRR and its
grantees. NIDRR will focus its specific KT activities in the domains of
employment, participation and community living, health and function,
and technology.
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Definition of Knowledge Translation
For NIDRR, the definition of KT refers to the multidimensional,
active process of ensuring that new knowledge gained through the course
of research ultimately improves the lives of people with disabilities,
and furthers their participation in society. The process is active, as
it not only accumulates information, but it also filters the
information for relevance and appropriateness, and recasts that
information in language useful and accessible for the intended
audience. KT includes transfer of technology, particularly products and
devices, from the research and development setting to the commercial
marketplace to make possible widespread utilization of the products or
devices.
NIDRR is particularly focused on ensuring that disseminated
information is of high quality and based on scientifically rigorous
research and development. To advance its dissemination of high quality
research, NIDRR may analyze aspects of successful procedures used for
review, synthesis and dissemination of research findings by other
agencies for potential usefulness in NIDRR KT activities. NIDRR is
especially interested in using models that encourage a thorough
discussion of research findings among researchers, with emphasis on
rigor and application possibilities. NIDRR also wants to ensure that
potential end users of information will have the information they need
to judge the quality of research and development findings and products,
from NIDRR and other agencies, and the relevance of these findings and
products to their particular needs.
The most appropriate target audience for KT will be determined in
large part by the domain and the stage of knowledge development under
consideration. For example, research on theories, measures and methods
will find a primary audience among researchers and practitioners,
whereas the primary target for activities related to new and improved
products and environmental adaptations will be people with disabilities
and service providers. The scope of KT as envisioned in this Plan
covers a wide range of activities and involves a variety of mechanisms,
including publication of research results, determination of the
effectiveness of research applications, development of targeted
materials, and the transfer of technology.
The Context for Knowledge Translation
The Institute has had a mission to disseminate its research
findings, and promote their utilization with a range of audiences,
since its establishment. As NIDRR expanded its conceptions and practice
of KT, the focus shifted from the perception of dissemination and
utilization as a linear, mechanical process of information transfer--in
which knowledge is packaged and moved from one place to another--to a
highly complex, nonlinear, interactive process, critically dependent on
the beliefs, values, circumstances, and needs of intended users. This
refocusing provided a key element for successful KT activities as
potential users now take an active role in acquiring and using new
knowledge. This change has paralleled the progressive improvement in
models used in disability research that position people with
disabilities in a highly integrative role as opposed to a non-
participatory role.
Most NIDRR centers and projects now fund information and
dissemination activities, with these activities becoming more
coordinated and integral to planning in recent years with the
establishment of a national center to disseminate NIDRR grantees'
research. NIDRR also has carried out specific KT activities through
grants and contracts monitored by NIDRR staff.
NIDRR intends that every new research project funded under this
Plan should develop and share new knowledge to improve the lives of
citizens with disabilities. In the United States, NIDRR and many other
research agencies have endeavored to make scientific results accessible
to all citizens, particularly results of Federal government-supported
research. Several science-related institutions including the National
Academy of Sciences (NAS), the National Science Foundation (NSF), and
the National Institutes of Health (NIH) have developed portals of
information that present research results, in various formats, to a
large numbers of users. Since 1994, NIDRR has funded the National
Center for Dissemination of Disability Research (NCDDR) for many of its
KT activities. Most of the NCDDR work is done through databases and Web
pages linked to other critical sources of research information.
Researchers, educators, service providers, and individuals with
disabilities use these easily accessible sources.
Challenges in Knowledge Translation
The biggest challenge faced by NIDRR, and other major research
agencies, is to diversify KT activities to better serve various
constituencies. While research organizations generally are good at
peer-to-peer dissemination, the leap required to move from research to
practice can be much more difficult. This process demands filtering the
information, determining the quality of the findings (source and
content), and aggregating research information from a number of NIDRR
research venues (no single project addresses all aspects of a problem).
It also requires a clear determination of how the research was
conducted and how it might fit the user's needs. KT also requires the
development of expertise in a number of media areas and development of
strategies that could be employed to reach end users. The tasks of
translation require regular contact between the translator and the
original researcher. While a researcher might not be the best person to
do the final dissemination, his/her involvement is essential to KT. The
research must envision the target system in the beginning of research,
the creation of a dissemination plan, and the development of a plan to
evaluate the outcome.
NIDRR intends to assist people with disabilities and their
families, and the general public, to efficiently access information.
This may require ``mediated navigation,'' that is, individuals may need
an intermediary to help them in the search for answers to their
questions. Some of the most common intermediary roles are librarian,
information specialist, knowledge management specialist, database
coordinator, or trainer. Similarly, many stakeholders may benefit from
appropriate translation of information into accessible forms. The use
of multiple mechanisms for dissemination will be employed including
knowledge sharing practices that make the maximum use of Web servers,
subscriptions systems, e-forums, feedback systems, databases,
Communities of Practice (COP), virtual libraries and other solutions-
related activities. COPs involve groups of people who share a concern,
set of problems, mandate, or sense of purpose. COPs serve to reconnect
individuals with each other in self-organizing, boundary-spanning
communities. COPs complement existing information structures by
promoting collaboration, information exchange, and sharing of best
practices across boundaries of time, distance, and organizational
hierarchies.
Accomplishments in Knowledge Translation
For more than 20 years, NIDRR has funded several research databases
for individuals with disabilities. These and other vehicles of KDU have
served as important resources for consumers, practitioners,
policymakers and researchers. NIDRR-funded databases
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have focused on applied rehabilitation research and the provision of
resources to provide access to up-to-date information on assistive
technology and other useful consumer information. In the last decade,
NIDRR has refocused and strengthened its KDU effort through focusing on
the end users of information, by capitalizing on technology and by
creating a technical assistance resource and a network of KDU centers
(KDUCs). By refocusing on the end users of information, the KDU program
has made researchers increasingly aware of the need to look beyond
parochial dissemination channels to the information needs of
stakeholder audiences such as people with disabilities and their
families, disability organizations, policymakers and researchers in
other fields.
The KDU program increased the outreach of grantees in many ways
including by taking advantage of the growth of the World Wide Web and
distance learning techniques to promote electronic dissemination.
Through publication of Research Exchange issues on dissemination,
reinforced by presentations at the National Association of
Rehabilitation Research and Training Centers (NARRTC), SCI and RERC
meetings, and technical assistance in one-on-one sessions, the number
of NIDRR grantees with Web sites increased from 33 percent to more than
85 percent over a five-year period. Currently, almost all NIDRR
grantees have Web sites. By continually monitoring the sites and
referring grantees to tools such as the Web Accessibility Initiative
(WAI), NIDRR has seen major improvements in the accessibility of the
grantee Web sites to people with disabilities.
Specific KDUCs, which have focused on such topics as IL, have
provided an array of ``translated'' material derived from NIDRR
research. The material is presented in language that can be used
readily by consumers. The materials produced by KDUCs have helped the
public understand issues regarding the Olmstead decision, the
capabilities of people with mental disabilities or illness, and the
success that people with disabilities can have as parents. They also
have encouraged private entities such as the Pew Foundation, to include
disability as an issue of importance in reports and grants.
The NIDRR KDU program also has expanded its component projects and
increased their utility to the public by establishing a public Web site
with about 60,000 holdings on NIDRR disability research. Instant online
searching of that information is available. A NIDRR Program Directory
provides descriptions on and contact information for the wide range of
NIDRR-funded activities. A searchable online database was created to
provide ready access to findings and results of NIDRR grantees'
research, and is updated weekly. Through the centralization of
information, numerous reports and data on many NIDRR grantees are
readily available, thus reducing the need to search every NIDRR
grantee's Web site for research outcomes. More than 1,200 resources now
are entered in the Electronic Library, and 250 entries are in the
Spanish version, the Biblioteca Electronica.
In addition, NIDRR has funded the premier database of information
on assistive technology, ABLEDATA, since 1980; it is a national
resource for assistive and rehabilitative technology product
information. Using the World Wide Web, the database is searched more
than 1 million times annually, and generates telephone inquiries. The
database offers more than 30,000 assistive technology products from
domestic and international sources, and information on more than 6,000
manufacturers, and has been cited as a model for the development of
similar systems.
To enable rehabilitation service providers to work more effectively
with individuals born outside the United States, NIDRR funded a series
of 11 monographs that describe the cultures and customs of foreign
countries. The 11 countries chosen for the monographs were those with
the highest number of emigrants to the United States. The monographs
addressed issues that are crucial for service providers to understand
in their work to achieve successful rehabilitation outcomes with
foreign-born individuals who have disabilities.
Future Agenda
NIDRR is interested in developing improved ways to make information
accessible to the research community and to disability-related agencies
and organizations. NIDRR will continue to encourage and support
dissemination of research information to consumers as an important
aspect of its mission and legislative mandate. Building on NIDRR's
solid foundation of peer-to-peer dissemination, individual centers will
be encouraged to reach out to their constituent populations.
NIDRR intends to strengthen the dissemination work done by its
specific content-based KT centers and regional networks of technical
assistance centers. NIDRR will examine the use of its regional networks
of technical assistance centers that focus on the ADA and educational
technology, and look at expanding their scope to include high quality
review and discussion of research results from NIDRR researchers before
translation and dissemination to the public. NIDRR will advance its KT
activities by emphasizing expert judgments on the value of information
for further dissemination; better accountability for outputs produced
by NIDRR researchers, and improved methods for making this information
available beyond the research community. NIDRR will support all centers
as they maintain and disseminate information of wide relevance to
persons with disabilities and will encourage the effective use of
electronic transmission, accessible media, and translation into
multiple formats. In this effort, NIDRR will focus on ways of
publishing and disseminating research to the public that will improve
upon the traditional dissemination tools and methods and advance the
use of technology to promote accessible video libraries and virtual
libraries, among other methods.
Knowledge Translation includes the provision of information,
technical assistance, and training in areas related to disability
policy. The Act assigns to NIDRR the responsibility for those
activities in relation to the ADA. NIDRR intends to implement those
activities through a national network of regionally based centers that
will provide assistance to disability organizations, individuals with
disabilities, businesses, public agencies, and the general public, and
that will contribute to research on topics covered under the ADA.
NIDRR will further the development of a theory of KT, the
development of measures of success, and uniform definitions and
requirements of NIDRR grantees and contractors. These complex endeavors
will be undertaken with support from the network of all NIDRR's DRRP
and KT projects. The efforts will concentrate on developing mechanisms
to learn how research results are relevant to stakeholder needs and how
the research results can help people with disabilities improve their
conditions--for example, achieve better access to education,
employment, independent living and wellness.
NIDRR will increase its KT activities by examining the needs of the
end users of information. The new approach will look at the user needs
in terms of: characterizing users of NIDRR's research; identifying
users' goals or purposes; assuring alignment of the nature and quality
of the information disseminated with the goals of the users;
[[Page 8197]]
providing support and assistance to different users to help them find
the information that they need; and meeting the accessibility
requirements of people with disabilities. This approach also will
facilitate NIDRR's growth in the KT area by addressing questions on
methods for KT including: a mechanism for the review and validation of
project results as a stage in translation; assistance to projects in
using existing clearinghouses; and a mechanism to track specific
results to identify long-term accomplishments.
NIDRR will focus on high quality peer review and discussion of one
major product for each research and development area each year. This
type of peer discussion and consensus by researchers will be
facilitated through a special database and the results will be reviewed
for accuracy and completeness.
Thus, NIDRR's agenda in the area of KT is designed to:
Increase the availability of relevant information to
NIDRR's intermediate and intended beneficiaries by developing and
implementing a systematic approach to vetting information.
Increase understanding of how best to communicate new
knowledge to beneficiaries.
Increase the availability of technologies that enable
independent mobility, control, and manipulation of the home, community
and workplace environments and access and use of information through
technology transfer.
Appendix 1--Expert Panel Members
Elena Andresen, a professor and chief of the epidemiology
division in the Department of Health Services Research, Management
and Policy at the University of Florida, has over 15 years of
experience in the area of epidemiology. Her research interests
include women's health and chronic disease epidemiology, disability,
and the use of outcomes measures in clinical, epidemiologic and
health services research. Andresen's grant review participation
includes the Centers for Disease Control and Prevention (CDC), the
National Institutes on Aging, and Department of Veterans Affairs
(VA). She also has served on committees for the Institute of
Medicine, the Agency for Healthcare Research and Quality (AHRQ), and
the CDC. Andresen is a member of the American Public Health
Association, the American College of Epidemiology, the Association
of Teachers of Preventive Medicine, and the Society for
Epidemiologic Research. Andresen has a doctoral degree in
epidemiology from the University of Washington.
Bobbie J. Atkins, a professor in the Master's Program in
Rehabilitation Counseling at San Diego State University, has over 25
years of experience in teaching, research, writing, and service in
rehabilitation counseling. She has distinguished herself as a leader
nationally and internationally with expertise in diversity, alcohol
and drug prevention, AIDS education, and supervision. In 1999, the
National Association for Multicultural Rehabilitation Concerns named
its research award the Bobbie J. Atkins Rehabilitation Research
Award. Atkins has received numerous awards including the Mary E.
Switzer Fellow from the National Rehabilitation Association and has
served on the President's Committee on Employment of Persons with
Disabilities. She is the 2003 recipient of the National
Rehabilitation Association (NRA) Presidents' Award for outstanding
contributions to the field of rehabilitation. As the current project
director of Project Success, a Rehabilitation Services
Administration (RSA) funded capacity-building project, she is
directly impacting people of color through training and technical
assistance on grant writing and submission. Atkins' doctoral degree
in rehabilitation counseling psychology is from the University of
Wisconsin-Madison.
Henry B. Betts, chairman of the Rehabilitation Institute of
Chicago (RIC) Foundation, is a pioneer in the field of
rehabilitation medicine. He has served the RIC as president, chief
executive officer and medical director. He was chairman of the
Department of Physical Medicine and Rehabilitation at Northwestern
University's Feinberg School of Medicine until October 1994 and also
the first Paul B. Magnuson Professor in that department. Betts has
spent his life changing attitudes and improving conditions for
people with disabilities. At RIC, he created what is now one of the
Nation's largest residency programs in physical medicine and
rehabilitation. He has advocated for many issues including the
Americans with Disabilities Act of 1990, improved accessibility in
public buildings and walkways, and seat belt and drunk driving laws.
He works vigorously on issues of employment of people with
disabilities. Betts serves as a board member on many professional
and community organizations. The Prince Charitable Trusts honored
his efforts in 1990 by establishing the Henry B. Betts Award,
conferred annually upon an individual whose work has benefited the
disability community. Betts has a medical degree from the University
of Virginia.
Frank G. Bowe, the Dr. Mervin Livingston Schloss Distinguished
Professor at Hofstra University, teaches courses in special
education, technology and rehabilitation in the department of
counseling, research and special education. His first job was
working with the late Mary E. Switzer, America's foremost leader and
trailblazer for innovative programs at the national, State and local
levels for people with disabilities in vocational rehabilitation. As
the founding chief executive officer of the American Coalition of
Citizens with Disabilities (ACCD) in the late 1970s, Bowe was
instrumental in the implementation of historic civil rights for
people with disabilities, including sections 501-504 of the
Rehabilitation Act, housing, transportation and special education.
He has held several congressional and presidential appointments. For
over 25 years, Bowe has advised the U.S. Senate, the U.S. House of
Representatives and executive branch agencies on Federal disability
policy. He has received numerous awards including the Distinguished
Service Award of the President of the United States and the
Americans with Disabilities Act Award for his role in the enactment
of the legislation. Bowe has a doctoral degree in educational
psychology from New York University.
Judi Chamberlin, a psychiatric survivor, author and activist is
a co-founder of the Ruby Rogers Advocacy and Drop-In Center, a self-
help center run by and for people who have received psychiatric
services. She is the author of On Our Own: Patient Controlled
Alternatives to the Mental Health System. Chamberlin is the Director
of Education and Training at the National Empowerment Center and is
a senior consultant at the Boston University Center for Psychiatric
Rehabilitation where she directed a research project on user-run
self-help services. She has spoken at conferences and meetings
throughout the U.S. and abroad and has appeared on many radio and
television programs discussing the topics of self-help and patients'
rights. Chamberlin has received numerous awards for efforts
including the Distinguished Service Award of the President of the
United States by the President's Committee on Employment of People
with Disabilities, the David J. Vail National Advocacy Award, and
the 1995 Pike Prize, which honors those who have given outstanding
service to people with disabilities.
Dudley S. Childress is a professor of biomedical engineering in
the Department of Physical Medicine and Rehabilitation at
Northwestern University and a research health scientist in the VA's
Chicago Health Care System-Lakeside Division where he directs the
Prosthetics Research Laboratory. At Northwestern, he directs NIDRR's
RERC in Prosthetics and Orthotics and is the executive director for
the Prosthetics and Orthotics Education Program. His present
research and development activities are concentrated in the areas of
biomechanics, human walking, artificial limbs, ambulation aids and
rehabilitation engineering. He engages in the development of
engineering systems that assist people with ambulation problems and
that provide control for artificial hand/arm replacements.
Childress, a recipient of numerous honors and awards including the
Missouri Honor Award for Distinguished Service in Engineering, is
also a member of the Institute of Medicine of the National Academy
of Sciences. Childress has a doctoral degree in electrical
engineering from Northwestern University.
Patrick E. Crago is a professor and chairman of the Department
of Biomedical Engineering at Case Western Reserve University. With
over 25 years of engineering experience, Crago's research interests
include restoration of movement by functional neuromuscular
stimulation and in normal and pathological movement control and
regulation. His current research projects include biomechanical,
neural and neuroprosthetic control of the wrist, forearm and elbow,
and the clinical implementation
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and evaluation of neuroprostheses for hand grasp and proximal arm
control. Crago has served on many committee and advisory boards for
numerous organizations and Federal agencies. Crago has a doctoral
degree in biomedical engineering from Case Western Reserve
University.
Eric Dishman, a senior social scientist and principal engineer
at Intel Corporation, is director of the Intel Proactive Health Lab.
His team's current fieldwork and technology trials focus on helping
mild cognitive impairment patients to maintain independence,
function, and quality of life from their own homes through the use
of wireless sensor networks and other computing technologies. In
partnership with the American Association of Homes and Services for
the Aging, Dishman serves as the chair of the Center for Aging
Services Technologies, and he also recently co-founded the Everyday
Technologies for Alzheimer's Care consortium with the Alzheimer's
Association. Dishman is a nationally known speaker on the topics of
aging and home healthcare technologies, and he serves as an advisor
to numerous companies, universities, and Congressional members on
assistive technologies, telemedicine, and home healthcare. Dishman
has a master's degree in Speech Communication from Southern Illinois
University at Carbondale.
Pamela W. Duncan, a physical therapist and epidemiologist, is
recognized nationally and internationally as a leader in
rehabilitation outcomes research and practice. Duncan recently
joined the faculty at the University of Florida and is the director
of the University's Brooks Center for Rehabilitation Studies and the
Rehabilitation Outcomes Research Center of Excellence at the North
Florida/South Georgia Veterans Health System. Her research provides
leadership in evaluating the effectiveness of medical
rehabilitation, the development of health status measures for the
chronically disabled, and the design of clinical trials to evaluate
exercise interventions for frail elders and stroke survivors. Duncan
has served as co-chair of the Agency for Health Care Policy and
Research (AHCPR) Post-Acute Stroke Guidelines and has served on the
advisory committees for Health Care Financing Administration (HCFA),
Canadian Stroke Network and the National Institute of Neurological
Disorders and Strokes (NINDS). As a member of the American Heart
Association (AHA) public policy committee, she advocates for
national funding for rehabilitation services and research and
development of quality indicators for stroke care. She is on the
editorial board of numerous journals and her work has been published
in a variety of journals including Stroke, the Journal of the
American Geriatric Society, the Journal of Gerontology Medical
Science, and the Archives of Physical Medicine and Rehabilitation.
Duncan has a doctoral degree in epidemiology from the University of
North Carolina-Chapel Hill.
Glenn T. Fujiura is an Associate Professor of Human Development
and Director of Graduate Studies in the College of Applied Health
Sciences at the University of Illinois at Chicago (UIC). Dr.
Fujiura's research has focused on the fiscal structure and
demography of the disability service system, on family policy,
evaluation of long-term care services, poverty and disability,
ethnic and racial issues in disability, and on the statistical
surveillance of disability. In addition, he has a long-standing
interest in research methodology, statistical analysis, and
philosophy of science. He teaches research methods, advanced
research concepts, and statistics for the graduate program in
Disability Studies at the UIC. His current major projects include a
NIDRR-supported epidemiological study of disablement in the third
world using data from the World Bank and State level program
evaluations. He has worked extensively in both the creation of large
national data sets in mental retardation and developmental
disabilities, and in the secondary analysis of national statistical
surveillance systems. Dr. Fujiura was a recipient of the National
Rehabilitation Association's Switzer Scholar award, served as a
member of the President's Committee on Mental Retardation, and was
Chair of the U.S. Administration on Developmental Disabilities
Commissioner's Multicultural Advisory Committee. Fujiura has a
doctoral degree in special education from the University of Illinois
at Urbana-Champaign.
Allen C. Harris, the director of the Iowa Department for the
Blind, has served as a chief in the Bureau of Field Operation and
Implementation for the New York State Commission for the Blind and
Visually Handicapped. Harris has been the recipient of numerous
awards including the Lifetime Achievement Award from the National
Federation of the Blind of Michigan and the Distinguished Blind
Educator of the Year from the National Association of Blind
Educators. He serves on several boards including the Lions Club of
Iowa, the National Organization of Rehabilitation Partners and the
National Council of State Agencies for the Blind. Harris has a
master's degree in education from Wayne State University.
David Mank, the director of the Indiana Institute on Disability
and Community, is a professor in the School of Education at Indiana
University. A writer and researcher, Mank has an extensive
background in the education and employment of persons with
disabilities. He has extensive responsibility for Federal and State
grant management of more than 20 projects as principal investigator,
director or co-director. His interests include transition from
school to adult life and community living. He is also past president
of the Association of University Centers on Disabilities and a
member of the Governing Council of the International Association for
the Scientific Study of Intellectual Disabilities. In 2001, he
received the Franklin Smith Award for National Distinguished Service
by The Arc of the United States. Mank has a doctoral degree in
special education and rehabilitation from University of Oregon.
Kathleen Martinez, deputy director of the World Institute on
Disability (WID), is an internationally recognized disability rights
leader with particular focus on employment, minority and gender
issues. At WID, Martinez is responsible for the development and
supervision of all of WID's international, technical assistance,
employment and training projects. She currently supervises Proyecto
Visi[oacute]n, a National Technical Assistance Center for Latinos
with Disabilities and the five-year International Disability
Exchanges and Studies for the New Millennium Project. Through these
projects, Martinez oversees the production of the bilingual
international webzine, Disability World, and a Web site designed to
connect U.S. based disabled Latinos to the world of employment. In
July 2002, she was appointed by President George W. Bush as a member
of the National Council on Disability. On the Council, she chairs
the International Watch Committee and is a leader in the Council's
employment and diversity initiatives. Martinez has a bachelor's
degree in speech and communications studies from San Francisco State
University.
John L. Melvin, the Jessie B. Michie Professor and chairman of
the Department of Rehabilitation Medicine at the Jefferson College
of Medicine of the Thomas Jefferson University, served as medical
director of the Curative Rehabilitation Center of Milwaukee, vice
president for medical affairs of Moss Rehab and chairman of Physical
Medicine and Rehabilitation at the Albert Einstein Medical Center of
Philadelphia. Melvin has been the president or chairman of 11 major
national and international organizations and has served on 41
national and international expert advisory committees including the
Institute of Medicine and the National Research Council of the
National Academy of Sciences. He is currently chair of the advisory
board for the Boston University RRTC for Measuring Rehabilitation
Outcomes sponsored by NIDRR. Melvin has a medical degree from Ohio
State University.
Erica Nash, is president and executive director of Help-Your-
Self, an organization that is dedicated to helping any person with
disabilities improve and maintain his or her lifestyle by providing
tools and services to enable community integration, independence,
and increased self-sufficiency and productivity, in accordance with
individual goals. Nash is a member of the Mayor's Committee on
Persons with Disabilities and on other committees including the D.C.
Medical Assistance Administration and the Office of Disabilities and
Aging. Nash has a bachelor's degree in international communications
and public relations for arts management from American University,
and will complete her master's degree in technology and management
for non-profit and arts organizations from American University in
June of 2005.
Margaret G. Stineman is an associate professor of rehabilitation
medicine in the Department of Rehabilitation Medicine, a senior
fellow of the Institute on Aging, a senior fellow with the Leonard
Davis Institute of Health Economics, and an associate scholar in the
Clinical Epidemiology Unit of the Center for Clinical Epidemiology
and Biostatistics at the University of Pennsylvania. She was the
principal architect of the patient classification approach used by
the Centers for Medicare and Medicaid Services in its
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prospective payment system for inpatient rehabilitation facilities.
She has consulted with the World Health Organization in Geneva,
Switzerland, on community-based rehabilitation. Her current work
focuses on addressing social and environmental barriers to the
participation of people with disabilities in activities that are
meaningful to them. Stineman has a medical degree from Hahnemann
University.
Carl Suter, originally from the state of Illinois, is the
executive director of the Council of State Administrators of
Vocational Rehabilitation (CSAVR). Prior to joining the CSAVR, Mr.
Suter was the director of the Illinois Office of Rehabilitation
Services for five years. He oversaw a budget of nearly $500 million
that included programs such as vocational rehabilitation, a $300
million in-home care program for persons with disabilities, three
schools for children with disabilities, and disability adjudicative
services for determining eligibility for benefits for the Social
Security Disability Insurance Program and Supplemental Security
Income in Illinois. During his tenure as State director, he led
sweeping reforms of the Illinois Vocational Rehabilitation Services
Program to provide world-class customer service to the nearly 70,000
individuals with disabilities served through its programs. Suter has
also served as the executive director of the Illinois Council on
Developmental Disabilities and as the associate director of the
Illinois Association of Rehabilitation Facilities. Suter has a
bachelor's degree in speech communication from the University of
Illinois at Urbana-Champaign.
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[GRAPHIC] [TIFF OMITTED] TN15FE06.000
[FR Doc. 06-1255 Filed 2-14-06; 8:45 am]
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