FR Doc 06-1255
[Federal Register: February 15, 2006 (Volume 71, Number 31)]
[Notices]
[Page 8165-8200]
From the Federal Register Online via GPO Access [wais.access.gpo.gov]
[DOCID:fr15fe06-165]
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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
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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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Education documents published in the Federal Register, in text or Adobe
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Note: The official version of this document is the document
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Regulations is available on GPO Access at:
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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