[Federal Register Volume 70, Number 143 (Wednesday, July 27, 2005)]
[Notices]
[Pages 43522-43555]
From the Federal Register Online via the Government Publishing Office [www.gpo.gov]
[FR Doc No: 05-14741]



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Part II





Department of Education





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National Institute on Disability and Rehabilitation Research--Notice of 
Proposed Long-Range Plan for Fiscal Years 2005-2009; Notice

  Federal Register / Vol. 70, No. 143 / Wednesday, July 27, 2005 / 
Notices  

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DEPARTMENT OF EDUCATION


National Institute on Disability and Rehabilitation Research--
Notice of Proposed Long-Range Plan for Fiscal Years 2005-2009

AGENCY: Office of Special Education and Rehabilitative Services, 
Department of Education.

ACTION: Notice of proposed long-range plan for fiscal years 2005-2009.

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SUMMARY: The Assistant Secretary for Special Education and 
Rehabilitative Services (OSERS) proposes the National Institute on 
Disability and Rehabilitation Research's (NIDRR) Long-Range Plan (Plan) 
for fiscal years 2005 through 2009. As required by the Rehabilitation 
Act of 1973, as amended, 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: We must receive your comments on or before August 26, 2005.

ADDRESSES: Address all comments about this proposed Plan to Donna 
Nangle, U.S. Department of Education, 400 Maryland Avenue, SW., room 
6030, Potomac Center Plaza, Washington, DC 20204-2700. If you prefer to 
send your comments through the Internet, use the following address: 
[email protected].
    You must include the term ``Long-Range Plan'' in the subject line 
of your electronic message.

FOR FURTHER INFORMATION CONTACT: Donna Nangle. Telephone: (202) 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 under FOR FURTHER 
INFORMATION CONTACT.

SUPPLEMENTARY INFORMATION:

Invitation to Comment

    We invite you to submit comments regarding this proposed Plan. To 
ensure that your comments have maximum effect in developing the final 
Plan, we urge you to identify clearly the specific area of the Plan 
that each comment addresses and to arrange your comments in the same 
order as the proposed Plan.
    During and after the comment period, you may inspect all public 
comments about this proposed Plan in room 6032, 550 12th Street, SW., 
Potomac Center Plaza, Washington, DC, between the hours of 8:30 a.m. 
and 4 p.m., Eastern time, Monday through Friday of each week except 
Federal holidays.

Assistance to Individuals With Disabilities in Reviewing the Record

    On request, we will supply an appropriate aid, such as a reader or 
print magnifier, to an individual with a disability who needs 
assistance to review the comments or other documents in the public 
rulemaking record for this proposed Plan. If you want to schedule an 
appointment for this type of aid, please contact the person listed 
under FOR FURTHER INFORMATION CONTACT.
    Background: This proposed Plan presents a research agenda anchored 
in legislative mandate, consumer goals, and scientific initiatives. The 
proposed 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 Plan in terms of 
annual priorities, evaluation of the implementation of the Plan, and 
updates of the Plan as necessary.
    (4) To direct new emphasis to the management and administration of 
the research endeavor.
    This proposed 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 
Department of Health and Human Services.
    The authority for the Secretary to establish the Plan is contained 
in section 202(h) of the Rehabilitation Act of 1973, as amended (29 
U.S.C. 762(h)).
    The proposed Plan is published as an attachment to this notice.

Electronic Access to This Document

    You may review this document, as well as all other Department of 
Education documents published in the Federal Register, in text or Adobe 
Portable Document Format (PDF) on the Internet at the following site: 
http://www.ed.gov/news/fedregister.
    To use PDF you must have Adobe Acrobat Reader, which is available 
free at this site. If you have questions about using PDF, call the U.S. 
Government Printing Office (GPO), toll free, at 1-888-293-6498; or in 
the Washington, DC, area at (202) 512-1530.

    Note: The official version of this document is the document 
published in the Federal Register. Free Internet access to the 
official edition of the Federal Register and the Code of Federal 
Regulations is available on GPO Access at: http://www.gpoaccess.gov/nara/index.html.


    Dated: July 21, 2005.
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 2005-2009 (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 activities and the research strategies that 
will be employed to address NIDRR's mission.

Part A. Introduction and Background 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

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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 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 proposed Plan was developed with extensive input from a 
steering committee of researchers, service providers, and people with 
disabilities. 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. Appendix 
1 of this Plan contains a list of steering committee members.

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), and the report of the 
President's New Freedom Commission On Mental Health. 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 to 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, 
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

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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 health care 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 health care 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 
health care 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 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.

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 health care, 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 and renamed 
demographics. 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-

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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 
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\

    \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).

    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, 
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

[[Page 43526]]

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 addresses accountability, management, and evaluation through 
the use of a 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), knowledge translation (KT) and capacity building (C-
B). 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.
    The R&D arena is subdivided into stages of knowledge development 
which include: Discoveries; theories, measures and methods; and 
interventions, products and devices, and environmental modifications. 
Under each of these arenas, 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.
    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.
    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.
    Appendix 1 to this Plan lists the NIDRR 2005-2009 Long-Range Plan 
steering committee members.

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 as 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.
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    \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 by the Fifty-fourth World Health 
Assembly for international use on 22 May 2001 (resolution WHA54.21). 
http://www3.who.int/icf/intros/ICF-Eng-Intro.pdf.
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    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

[[Page 43527]]

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 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 health care. 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   5  16    65
Race and Hispanic or Latino origin    aged 5 and    older  to  to   and
                                         older             15  64  older
------------------------------------------------------------------------
Total.............................     257,167,527  19.3   5.  18  41.9
                                                           8   .6
White alone.......................     195,100,538  18.5   5.  16  40.6
                                                           6   .8
Black or African American alone...      30,297,703  24.3   7   26  52.8
                                                               .4
American Indian and Alaska Native        2,187,507  24.3   7.  27  57.6
 alone............................                         7
Asian alone.......................       9,455,058  16.6   2.  16  40.8
                                                           9   .9
Native Hawaiian and Other Pacific          337,996   19    5.  21  48.5
 Islander alone...................                         1
Some other race alone.............      13,581,921  19.9   5.  23  50.4
                                                           2   .5
Two or more races.................       6,206,804  21.7   7.  25  51.8
                                                           1   .1
Hispanic or Latino (of any race)..      31,041,269  20.9   5.  24  48.5
                                                           4
White alone, not Hispanic or           180,151,084  18.3   5.  16  40.4
 Latino...........................                         7   .2
------------------------------------------------------------------------


                              Table 2.--Prevalence of Disability by Age and Gender
----------------------------------------------------------------------------------------------------------------
                          Total                                      Males                      Females
----------------------------------------------------------------------------------------------------------------
                                  Number           %          Number           %          Number           %
----------------------------------------------------------------------------------------------------------------
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           %          Number           %          Number           %
----------------------------------------------------------------------------------------------------------------
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

[[Page 43528]]

 
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       8,343,836        43.0
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 the 
demographics of disability, 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

[[Page 43529]]

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 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 health care services, and the assessment of 
rehabilitation effectiveness.
    The outer ring of the Logic Model includes two additional domains: 
technology for access and function and demographics of disability. 
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 demographics of disability 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, promoting 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

[[Page 43530]]

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 
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, either directly or 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

[[Page 43531]]

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 
decisionmaking 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 
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
----------------------------------------------------------------------------------------------------------------
           Time horizon                    Process          Description of activities           Product
----------------------------------------------------------------------------------------------------------------
36-24 months prior to start of      Pre-planning.........  Review Plan, strategic and  Potential priority areas
 fiscal year (FY).                                          performance goals,          in broad terms.
                                                            portfolios of existing
                                                            projects to address
                                                            emergency opportunities
                                                            and ongoing needs.
24-18 months now to start of FY...  Planning.............  Initial environmental       Refined list of
                                                            scan, identification of     priorities.
                                                            potential projects.
9 months prior to start of FY       Program..............  Based on budget and         Priorities.
 through start of FY.               Priority Choices.....   identified goals and
                                                            criteria, establish
                                                            specific priorities and
                                                            issued announcement.
During FY.........................  Pre-Award Decision     Make award decisions based  Projects chosen for award
                                     and Award.             on peer review and          based on peer review and
                                                            program considerations.     extent to which purposed
                                                                                        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            Review goal measurements,   Documented outcomes.
                                     evaluation.            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
----------------------------------------------------------------------------------------------------------------
                 Item                               Description/implication                     Timeframe
----------------------------------------------------------------------------------------------------------------
Regulation changes...................  Update selection criteria and legislative         1 year.
                                        references; implement small grant authority;
                                        describe procedures for resubmission; establish
                                        proposal content.
Fixed competition schedule...........  Annual announcement of priorities; notices        3 years.
                                        inviting applications, peer reviews, and grant
                                        awards at regular dates.
Standing panels for competition        Enhance content-expertise standing panels.......  3 years.
 review.
Evaluate clusters....................  Using expert panels, review topical project       5 years.
                                        clusters.
GPRA panels..........................  Establish standing panels for annual review of    3 years.
                                        quality of outputs, research rigor, short-term
                                        outcomes.
Environmental scan...................  Establish procedures for conducting               4 years.
                                        comprehensive studies of relevant
                                        technological, scientific and policy changes
                                        with implications for disability.
Independent expert review............  Conduct comprehensive review by independent       3 years.
                                        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 Program Performance Report (APPR) as one source document.
     NIDRR intends to institute systematic ``environmental 
scans'' to help ascertain elements of technology,

[[Page 43532]]

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 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 through R&D projects 
and are directed toward solving specific problems identified by NIDRR.
    A program of field-initiated (FI) research was created by NIDRR in 
1984, under its R&D authority. The 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 
permit 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 
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, partner agency needs, 
opportunity to respond to new discoveries, continuation of 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 of 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

[[Page 43533]]

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 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, allowing 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 (DHHS). NIDRR also conducts employment research jointly with 
the U.S. Department of Labor and conducts NFI-related activities with 
the Office on Disability of DHHS, through memoranda of understanding.
    Another avenue for interagency cooperation is participation in 
groups such as the Washington Research Evaluation Network (WREN), which 
is a partnership of a number of Federal agencies that have joined 
together to serve 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 furthers the implementation of 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 are conducting 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,

[[Page 43534]]

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; 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.

Goal 1: Advance Knowledge Through Research and Related Activities

    Generate scientific knowledge, technologies, and applications to 
inform policy, change practice and improve outcomes.
     Objective 1a: Contribute evidenced-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 tools 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 decisionmaking, 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 scientific-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 the conduct of research to 
improve the lives of people with disabilities. The

[[Page 43535]]

associated strategic goal for this is to generate scientific-based 
knowledge, technologies, and applications to inform policy, change 
practice, and thereby improve overall conditions for people with 
disabilities. This section focuses 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 health care 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.

Context of 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, health 
care, 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

[[Page 43536]]

generalizable to large numbers of people with disabilities.
    Disability and rehabilitation researchers explore methods, costs 
and results of services by rehabilitation programs or supported 
employment, including studies of natural supports at work as they 
relate to employment 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 DHHS 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 attempts relate 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 gain 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

[[Page 43537]]

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.
     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 evidenced-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 encompass the ultimate goal of full 
societal participation of people with cognitive and psychiatric 
disabilities. Thus, incorporation of the IL and community integration 
terms within the term of participation will allow NIDRR to focus on the 
ultimate outcome sought by all people with disabilities. This chapter 
mainly addresses general research needs related to achieving societal 
participation for people with all types of disabilities. Where 
necessary, the Plan presents research topics that are specific to 
promoting participation among particular subpopulations of people with 
disabilities.
    Research enhances the scientific basis for a wide range of policies 
and practices aimed at promoting the societal participation of 
individuals with disabilities. Research may include evaluation of 
specific participation-promoting programs, interventions and products, 
as well as development of methods, measures and theories to enhance the 
scientific rigor of these evaluations. NIDRR sponsors research to 
improve knowledge of individual- and societal-level factors that may 
serve as barriers to, or facilitators of, participation among all 
people with disabilities.

The Context for Research on Participation and Community Living

    The current policy context for research that promotes full 
participation of people with disabilities is supportive and 
encouraging. There are two major components of this context. The first 
is the Olmstead decision, which upholds the integration mandate from 
Title II of the ADA, requiring public entities to provide services ``in 
the most integrated setting appropriate to the needs of qualified 
individuals with disabilities.'' Just as encouraging is the 2003 report 
of the President's New Freedom Commission on Mental Health, which makes 
recommendations that would enable adults with serious mental illnesses 
and children with serious emotional disturbance to live, work, learn 
and participate fully in their communities.
    The Olmstead decision holds that States must place people with 
disabilities in community settings rather than institutions whenever 
appropriate. This decision and subsequent efforts by States to abide by 
it have spotlighted the many barriers to meaningful community 
participation of people with disabilities. These barriers include, but 
are not limited to: (1) A shortage of affordable and accessible housing 
in the community, (2) a shortage of personnel to serve as personal 
assistants in the community, (3) a lack of accessible and appropriate 
community-based health and dental care, (4) a lack of accessible 
transportation, (5) problems and gaps in the mental health service 
delivery system, and (6) a persistent bias in Medicaid-funded long-term 
care programs that channels resources away from communities and into 
institutions. Many States are models of effective planning for Olmstead 
implementation. Full implementation of these thoughtful plans could 
lead to enhanced integration and participation of people with 
disabilities.
    Future research on community integration, IL and participation of 
people with disabilities also will be influenced by the 2003 report of 
the President's New Freedom Commission on Mental Health, ``Achieving 
the Promise: Transforming Mental Health Care in America.'' The report 
provides six major goals for our nation's mental health efforts that 
are directly related to the participation of individuals with 
psychiatric disabilities. These goals are (1) Americans understand that 
mental health is essential to overall health, (2) mental health care is 
consumer and family driven, (3) disparities in mental health services 
are eliminated, (4) early mental health screening, assessment,

[[Page 43538]]

and referral to services are common, (5) excellent mental health care 
is delivered and research is accelerated, and (6) technology is used to 
access mental health care and information.
    The above-mentioned report shows a mental health system in 
disarray. For children and adults with psychiatric disabilities, the 
service delivery systems, policies, finances and treatment options are 
fragmented, confusing and inadequate. Unnecessary institutionalization 
remains a problem, as do the practices of seclusion, restraint and 
forced treatment. Stigma remains a major obstacle to treatment, and 
suicide continues to be a major public health problem. People with 
psychiatric disabilities are overrepresented in the homeless population 
and in the juvenile and criminal justice systems. Existing policies 
frequently force parents of children with psychiatric disabilities to 
relinquish custody to ensure that their children receive adequate 
mental health care.
    To respond to the challenges described in the preceding paragraphs, 
NIDRR research in the area of participation develops and evaluates 
strategies for services, interventions, products and modifications to 
the built and social environment that would allow individuals with all 
types of disabilities to live and participate in their communities. 
These services, interventions, products and environmental modifications 
differ for specific subgroups of people with disabilities. NIDRR-funded 
researchers are among the vanguard of measurement experts seeking to 
develop new and improved theories and measures of participation and 
community living so that the impact of these specific strategies and 
interventions can be more accurately determined.

Accomplishments in Participation Research and Community Living

    NIDRR-sponsored research has been associated with a number of 
significant outcomes related to the participation of people with 
disabilities. These accomplishments are categorized as related to (1) 
theories, measures, and methods or (2) interventions, products and 
devices, and environmental adaptations.

Research on Theories, Measures, and Methods Has

     Addressed the full range of independent living issues, 
from the development of conceptual frameworks to policy research, to 
research addressing the management needs of centers for independent 
living (CILs).
     Led to the acceptance of the concept of consumer-direction 
and control among a broad population of people with disabilities. This 
concept originated among working-age individuals with physical 
disabilities, but more recently has been accepted by leadership in both 
the aging and developmental disability communities.
     Led to the development of new measures of participation 
and community integration among people with disabilities. Measures 
developed in the past include the Community Integration Questionnaire 
and the Craig Handicap Assessment and Reporting Technique (CHART).
    Research on Interventions, Products, Devices and Environmental 
Adaptations has:
     Led to the development and expansion of a range of 
services and programs designed to directly support individuals with 
disabilities in their communities.
     Helped determine that, from the consumer perspective, 
consumer-directed PAS are delivered in a manner that is no less safe 
than traditional agency-directed services.
     Increased the knowledge base about PAS programs and best 
practices among a wide variety of stakeholders, including local, State 
and Federal-level policymakers, service-providers, and disability 
advocates.
     Clarified the extent of PAS use, as well as the unmet need 
for PAS in the United States.
     Led to advances in treatment options and community-based 
supports for individuals with mental illness and psychiatric 
disability. These advances include recovery-oriented services and 
practices; psychiatric rehabilitation; peer supports and other natural 
supports in community and employment settings; supported education 
services in higher education, employment services that integrate mental 
health and vocational rehabilitation services; psychosocial 
rehabilitation; services that are provided by mental health consumers, 
and systems of care and wraparound services in children's mental 
health.
     Led the Alzheimer's Association and the Arc of the United 
States to use recommendations derived from NIDRR-funded research to 
promote constructive approaches to community care for people with 
intellectual and developmental disabilities affected by dementia.
     Promoted participation by creating the concept of 
universal design, which holds that all people, regardless of their 
physical or mental abilities, can feasibly create products and 
environments for use.
     Promoted participation by applying universal design 
principles to create accessible voting kiosks, ATMs, computers and 
other mass-market products that allow people with disabilities to 
participate in their communities.
     Promoted participation through the development of 
disability-accessibility guidelines for the World Wide Web.
     Promoted participation through design and application of a 
wide variety of technological products that allow easier navigation of 
indoor and outdoor environments by people with sensory disabilities. 
For example, ``Talking Signs[supreg]'' technology allows individuals 
with low vision to navigate indoor and outdoor environments. This 
remote infrared technology has been deployed in numerous cities 
throughout the U.S., Europe and Asia. Other NIDRR-sponsored research-
based advances include wayfinding applications, combinations of global 
positioning technologies with Braille capabilities, audio descriptions 
in theaters and closed-captioning in public spaces.

Research Agenda

    The expected outcome of NIDRR's research efforts, at the individual 
level, is the development of new knowledge that can be used to increase 
the capacity of people with disabilities to plan and direct their own 
lives, choosing among options for maintaining the level of independence 
and social involvement that they desire.
    The expected outcome of NIDRR's research efforts, at the systems 
level, is the production of knowledge that can be used to improve 
options and services for achieving independence and social involvement, 
and the supports necessary to realize those options.

Theories, Measures, and Methods

    Effective theories, measures and methods to achieve optimal levels 
of participation among individuals with disabilities are important 
because they:
     Improve understanding of the wide range of activities that 
may be associated with enhanced participation among people with 
disabilities.
     Improve tools that measure multiple dimensions of 
participation among individuals with disabilities.
     Improve the ability to scientifically identify and 
evaluate effective services and policies that impact the participation 
levels of individuals with disabilities.
    By bolstering understanding of the complex meaning of participation 
and employing new and improved measures

[[Page 43539]]

that adequately reflect this concept, NIDRR will build a stronger 
foundation of research-based knowledge upon which participation-focused 
services and policies can be based.
    NIDRR will continue to promote research that develops and 
strengthens theories for understanding and promoting community 
integration, IL and participation, as well as new methods for measuring 
these ultimate outcomes. NIDRR will continue to lead the way in the 
development of participation and community living measures. Current 
measures of participation and community integration largely have been 
developed by researchers working in the context of medical 
rehabilitation, and have been applied to populations of people with 
physical disabilities. Measurement of participation and community 
living among people with intellectual or cognitive disabilities still 
is in its infancy. NIDRR will sponsor research to construct reliable 
and valid theories and measures for participation and community 
integration of individuals with intellectual, cognitive, and 
psychiatric disabilities. These advances will provide a foundation for 
high quality research on these issues.
    NIDRR also plans to pursue research to develop advanced theories of 
disability and participation to capture the complex interaction of 
environmental and individual factors. That will require improvements in 
the ability to measure the influence of environmental factors on 
participation levels of people with disabilities. An increased 
understanding of the environment's role will sharpen understanding of 
the specific physical or social barriers to be addressed, and the 
facilitators on which to build enhanced participation.

Interventions, Products, Devices and Environmental Adaptations

    New and improved interventions, products, devices and environmental 
adaptations are important because they:
     Improve participation outcomes for all individuals with 
disabilities. Improved participation outcomes would include 
quantitative increases in the number of individuals with disabilities 
living and interacting in the community, as well as qualitative 
improvements in the nature and quality of that social involvement.
     Provide access to individualized services and supports to 
promote participation among all people with disabilities.
     Apply conceptually sound theories of societal 
participation for specific subgroups of people with disabilities.
     Can be tailored to the specific needs of individuals with 
physical, sensory, cognitive or psychiatric disabilities to reduce 
environmental barriers to participation.
    NIDRR is interested in promoting rigorous research based on well-
developed theories, using validated measures and appropriate methods 
that examine the efficacy and effectiveness of interventions and 
programs designed to promote community integration. These interventions 
may include Federal, State, and local programs, or improved 
environmental adaptations or devices that enhance the ability of 
individuals to live independently in the community. NIDRR is especially 
interested in sponsoring research on programs and interventions that 
will (1) promote participation in educational opportunities over the 
life span, (2) enhance access to recreation and transportation, (3) 
enhance access to PAS and direct-care providers, (4) promote the 
availability of accessible, affordable housing for people with 
disabilities, (5) enhance asset-accumulation practices among people 
with disabilities, and (6) enhance participation and integration of 
parents with disabilities, and families with children with 
disabilities.
    NIDRR intends to place particular emphasis on research related to 
direct supports and services that will enable individuals with 
disabilities to have options for participation and to implement their 
choices in their environments. The aim of this research would be to 
develop best practices for providing supports for people with 
disabilities living in the community.
    NIDRR also will sponsor research to determine the ways in which 
people with disabilities can use applications of universal design to 
reach their participation goals. This research will illuminate the 
barriers to, and facilitators of product utilization, and will guide 
future dissemination and marketing of state-of-the-art technologies.

Research Agenda

    NIDRR's research agenda in the domain of participation and 
community living is designed to:
     Strengthen the scientific basis of policies and practices 
aimed at enhancing participation among people with disabilities by 
providing information and analyses that improve understanding of 
participation levels among individuals with disabilities and the 
multiple barriers to and facilitators of their participation.
     Strengthen participation-related research and practice by 
increasing the availability of validated theories, measures, and 
methods. These theories, measures and methods will improve data sources 
and estimates, and will enable better identification, evaluation and 
prediction of the factors that facilitate or impede participation and 
community living. These improvements will enhance the credibility of 
research and thus increase the utilization of research findings.

C. Health and Function

Overview

    Maximizing health and function among people with disabilities is 
critical to the achievement of NIDRR's mission and the associated 
higher-order goals of employment and community participation. 
Functional ability reflects the complex interaction between individuals 
and the environments in which they live. Accordingly, NIDRR 
conceptualizes and examines issues of health and function at the 
systems and the individual levels.
    At the systems level, NIDRR-supported research focuses on the 
structure, organization, and delivery of health care and medical 
rehabilitation services. Individual level research focuses on the 
development and testing of new interventions that improve functional 
and health outcomes for individuals. At the systems level, NIDRR also 
studies access to health care and rehabilitative medicine, and the 
complex delivery systems used for those services.
    In conceptualizing health and function research to improve the 
lives of individuals with disabilities, NIDRR posits a growing need for 
research on medical rehabilitation interventions to improve function 
and for health status research to improve overall health and wellness 
of people with disabilities.

The Context for Health and Function Research

    NIDRR sponsors research to improve the health and function of 
individuals with disabilities, as well as to understand and improve the 
system of health care services delivery, including the delivery of 
medical rehabilitation services.
     Individual Level: Ongoing research and clinical efforts have 
produced a wide variety of programs, interventions, and products aimed 
at enhancing the health and function of individuals with disabilities. 
The scope of research in medical rehabilitation is as broad as the 
numerous conditions that result in disablement, and may focus on the 
onset of new conditions, the exacerbation of existing conditions, or

[[Page 43540]]

the development of coexisting conditions. Accordingly, there are 
important opportunities for advancements in a range of body systems.
    Over the course of the last several decades, neurobiologists have 
been advancing the understanding of the central nervous system and the 
complex mechanisms by which cells and neurons are able to compensate 
for and potentially heal injuries and lesions. NIDRR is well positioned 
to capitalize on these basic science findings by funding research to 
develop rehabilitative interventions that are based on the expanding 
knowledge of neurobiological processes. There is continuous research on 
prevention of secondary conditions among people with disabilities. 
Conditions such as pain, muscle weakness, obesity, cardiovascular de-
conditioning, and depression are especially prevalent for persons with 
disabilities, to a great extent because of their sedentary lifestyle. 
Studies have indicated that persons with disability are more 
susceptible to earlier age-related functional declines when compared to 
their non-disabled counterparts.
    NIDRR will continue to sponsor research that examines the impact of 
exercise and activity on the functional independence and overall health 
status of individuals with both newly diagnosed and long-term disabling 
conditions. Related to this research on the impact of physical activity 
on the health and function of people with disabilities are recent 
findings on the impact of complementary and alternative therapies. 
Interventions such as yoga, acupuncture, martial arts, and reflexology 
have enhanced effects on rehabilitation outcomes when coupled with 
conventional rehabilitation treatment modalities.
    There is also a growing body of research on the use of 
pharmacological interventions to improve health and functional 
outcomes. There are several examples in treating symptoms of major 
brain injuries, including new uses for existing drugs that may be 
effective in treating agitation and fatigue and addressing states of 
minimal consciousness. New drugs now in testing may show promise for 
managing spasticity in spinal cord injury (SCI) and multiple sclerosis 
(MS) and pain management in the arthritis population. Research in 
medical rehabilitation must remain attuned to pharmacological advances 
and be prepared to examine their use with rehabilitative interventions.
    Research on health and function also involves research on new 
technologies that improve diagnosis and measurement of disabling 
conditions, as well as devices to support enhanced function. Under 
investigation is the extent to which home-based tele-rehabilitation 
interventions are compliant with current clinical standards. 
Researchers are looking at multimedia and virtual reality technologies 
to minimize pain in burn treatment and to provide cognitive retraining 
for individuals with traumatic brain injury and stroke. Examples of 
other emerging technological interventions aimed at enhancing 
individual function include microelectronic connections between the 
central nervous system and muscle groups affected by injury or disease, 
and artificial intelligence to enable walkers and wheelchairs to 
navigate varied terrains.
    All of these research-based innovations that have developed over 
the course of the last decade provide the context and foundation for 
continuing advances in theories, interventions, and products that will 
help promote the health, wellness, and community participation of 
people with disabilities.
    Systems Level: The complex, ever-evolving health care delivery 
system in the U.S. plays a major role in the promotion and maintenance 
of health by all people, including people with disabilities. People 
with disabilities should have access to an integrated continuum of 
health care services, including primary care and health maintenance 
services, specialty care, medical rehabilitation, long-term care, and 
health promotion programs.
    While health services researchers are increasingly attuned to 
racial and ethnic disparities in health care, less attention and fewer 
resources are devoted to disability-related disparities and the 
innovations in policy and practice that might reduce them. Physically 
inaccessible offices and equipment, shortened appointments, and 
physician attitudes are significant barriers to the use of appropriate 
preventive services by people with disabilities. The relative lack of 
access to health care services by people with disabilities is likely to 
become an increasingly serious problem as the full implementation of 
the Olmstead decision shifts some individuals out of institution-based 
health care into mainstream health services.
    People with a range of disabilities disproportionately experience 
depression and other mental health conditions, and there is a 
substantial amount of unmet need for mental health services. The NFI 
strongly promotes improvements to the Nation's mental health care 
delivery system for individuals with severe mental illness. All people 
with disabilities--not just psychiatric disabilities--would benefit 
from increased access to mental health services.
    The population of people with disabilities is heterogeneous in 
terms of type of disabling condition, sociodemographic characteristics, 
and specific health care needs. Researchers must make concerted efforts 
to sample and collect data from the wide diversity of people with 
disabilities, including racial and ethnic minorities and people in low-
income categories. The health care experiences of these doubly 
underserved populations are different than the experiences of white, 
middle-income people with disabilities.
    The relatively small number of studies focusing on health care 
delivery for people with specific types of disability, sociodemographic 
backgrounds, and health care coverage, makes it difficult to piece 
together a coherent picture of the impact of the health care delivery 
system on health and wellness of people with disabilities. Given the 
relative lack of research resources in this important area, researchers 
must work together to synthesize this work to create a coherent body of 
knowledge that delineates specific practices and policies that are 
either beneficial or harmful to the health and wellness of people with 
disabilities. In addition to this synthesis of studies into a coherent 
mosaic, there is a need for large-sample, longitudinal research 
projects to determine the impact of health care systems on the health 
and wellness of the diverse population with disabilities. This endeavor 
will require increased inter-agency cooperation on health services 
research for people with disabilities.
    Accurately and appropriately measuring the health status of 
individuals with disabilities is critical to our understanding of the 
impact of the health care delivery system on their health and wellness. 
One barrier to accurate measurement of the health status of individuals 
with disabilities is the tendency of widely used measures to conflate 
functional ability with health. Functional capacity and health are 
distinct concepts; disability is not the same as poor health. NIDRR-
funded research has demonstrated that people with lower levels of 
functional capacity are, in the aggregate, less likely to report 
positive levels of health. Despite this association, a substantial 
number of individuals with low functional levels report that their 
health is good or excellent. Researchers need measures of health that 
do not rely on estimates of

[[Page 43541]]

functional capacity. The SF-36, developed by RAND to assess outcomes of 
medical care, is the most widely used health status measure in the 
world. Its holistic conceptualization of health is generally 
appropriate, but it is widely criticized by disability researchers for 
its tendency to conflate functional ability with health.
    Over the course of the last two decades, NIDRR's investment has 
been instrumental to the development of appropriate and effective 
measures of health and function for people with disabilities. NIDRR-
funded research led directly to the development of the current standard 
for measuring functional independence in rehabilitation settings, the 
Functional Independence Measure (FIM) (Granger et al., 1993).
    There has been considerable discussion about the problems of 
classifying specific interventions in medical rehabilitation, which is 
characterized by its overlapping teamwork approach practiced by 
physical therapists, occupational therapists, and other allied health 
professionals. NIDRR is funding groundbreaking research in this area. 
However, the lack of consensus on how to define and measure the 
multitude of interventions that take place within the ``black box'' of 
rehabilitation is a persistent barrier to a more rigorous and targeted 
evaluation of rehabilitation outcomes. The robustness of outcomes 
research findings requires that the intervention be delineated 
specifically so that it can be replicated or adapted by researchers or 
practitioners.

Accomplishments in Health and Function Research

    Research on theories, measures, and methods has advanced the field 
of medical rehabilitation at both the individual and systems levels. At 
the level of the individual, NIDRR has supported research on theories, 
measures, and methods that has:
     Supported the development of the Functional Independence 
Measure (FIM), the most commonly used functional assessment tool in 
rehabilitation medicine.
     Promoted the conceptual analysis of disability and 
functional outcomes as the interaction of the individual with his/her 
environment. NIDRR-funded researchers developed, tested, and 
implemented the use of the Craig Hospital Inventory of Environmental 
Factors (CHIEF) instrument to quantify a variety of environmental 
factors that promote or hinder functional independence and community 
participation.
     Developed computer-assisted methods for efficiently 
assessing health and functional status outcomes for individuals with 
disabilities.
     Developed, tested, and implemented widespread use of 
instruments such as the Craig Handicap Assessment Research Tool (CHART) 
and the Community Integration Questionnaire (CIQ) to measure community 
participation following medical rehabilitation.
     Supported development of quality of life instruments that 
take a person-centered perspective in evaluating long-term outcomes of 
disability.
     Developed instruments such as the Walking in Spinal Cord 
Injury (WISCI) to measure specific functional activities and mobility 
after spinal cord injury. This measure has been adopted by the European 
Clinical Trials Group in SCI.
     Developed information resources such as the Center for 
Outcomes Measurement in Brain Injury (COMBI), which provides detailed 
reliability, validity, and instructions for using the major outcomes 
assessment tools in traumatic brain injury (TBI).
    NIDRR research on theories, measures, and methods also has made 
many advances that inform the future agenda at the systems level:
     Documented that individuals with disabilities use a 
disproportionate amount of services from across the health care 
spectrum and incur higher per capita medical expenditures than do 
people without disabilities.
     Documented a persistent lack of consistent access to a 
broad spectrum of health care services by people with disabilities, 
including specific cancer screenings, and primary care, specialty care, 
and medical rehabilitation services.
     Described and documented a number of systematic barriers 
to health care for people with disabilities, as well as the 
consequences of those barriers for individuals' health, wellness, 
functional ability, and social participation.
     Determined that there are a number of health care quality 
factors that are unique to the population with disabilities, and that 
these factors are not reflected in population-based health care quality 
tools that are in current use.
     Improved the ability of State service agencies and 
education departments to meet the needs of children with mental health 
disorders by influencing changes in policy and practice regarding 
parent participation, and improving State financing mechanisms for 
children's mental health.
     Developed the conceptual, empirical, and technological 
base of the field of psychiatric rehabilitation and promoted widespread 
adoption of psychiatric recovery-oriented systems, services, and 
practices.
     Promoted access to mental health services, including 
alcohol and drug treatment services, for adults and children with 
physical and/or psychiatric disabilities.
     Supported the ongoing translation of the ICF 
classification system into the next generation of post-acute measures 
of function, performance of activities, and participation.
     Supported applications of state-of-the-art statistical 
modeling techniques and computer adapted testing methods for bringing 
increased efficiency and accuracy to the process of outcomes data 
collection.
    Achievements in research on interventions, products, devices, and 
environmental adaptations have created a basis at the individual level 
from which to direct future research. This research has:
     Established and maintained model systems programs in SCI, 
TBI and burn rehabilitation. These programs have collected longitudinal 
data to characterize the population and outcomes of individuals with 
these injuries as well as developed new evidence-based interventions to 
improve long-term functional, vocational, cognitive, and quality of 
life outcomes.
     Developed specific exercise protocols designed to 
strengthen and enhance flexibility among individuals with severe 
arthritis. These protocols have been adopted for use in both the clinic 
and home-based setting, but require further evaluation.
     Led to the development of novel methods of treating a 
number of secondary conditions associated with SCI, including urinary 
tract infections, dyslipidemia, cardiovascular disease, and pressure 
ulcers.
     Developed new computerized technology for the proper 
alignment of leg prostheses, to improve the mobility of individuals 
with foot amputations.
     Developed and tested therapeutic interventions focused on 
enhancing functional capacity following stroke. Further, NIDRR-funded 
stroke rehabilitation researchers have systematically documented the 
natural history of stroke impairment, short- and long-term disability, 
and the implications of these findings for rehabilitation practice and 
quality of life after stroke.
     Developed and disseminated an effective health behavior 
education curriculum that is being used by agencies in the U.S. and 
internationally to improve the physical activity and

[[Page 43542]]

recreational skills of people with intellectual and developmental 
disabilities.
     Developed the conceptual, empirical, and technological 
base of the field of psychiatric rehabilitation, and promoted 
widespread adoption of psychiatric recovery oriented systems, services, 
and practices, including alternative health practices.
     Identified best practices in comprehensive burn care, 
focusing on early intervention of rehabilitation to improve 
psychological well-being, functional status and employment status of 
burn survivors.
     Generated descriptive findings about the nature and 
etiology of a wide variety of disabling conditions that have set the 
stage for testing innovative interventions and rehabilitative 
treatments.
     Documented the increased propensity for persons aging with 
disability to encounter issues such as onset of new chronic conditions, 
decline of functional ability as a result of changed health status, 
diminished psychological well-being and quality of life, and diminished 
family and social supports (Thompson et al., 2001).
     Described and documented the dynamic psychosocial factors 
that affect community integration and participation of people with 
multiple sclerosis.
     Developed numerous assistive devices to improve the health 
and functional abilities of individuals with disabilities. Examples of 
these devices include prostheses, orthoses, communication aids, and 
mobility aids.
     Supported development of repetitive motion techniques on 
the treadmill, to improve stability and mobility of individuals with 
SCI and other mobility impairments.
     Developed and implemented telehealth and 
telerehabilitation initiatives to expand the ability of the organized 
healthcare and rehabilitation systems to diagnose, treat, and monitor 
ongoing needs of individuals with disabilities.
     Developed technological advances such as pressure garment 
materials to prevent contractures among burn survivors.
     Examined the use of portable hand-held devices to support 
cognitive functioning for individuals with TBI and other neurological 
conditions.
     Developed a product to support gait recovery in 
individuals with stroke that has been commercialized and is now sold in 
the U.S. and Japan.
    Research on interventions, products, devices, and environmental 
adaptations at the systems level has:
     Demonstrated that a substantial number of people with 
disabilities who need medical rehabilitation services and/or assistive 
equipment have difficulty accessing them, regardless of whether they 
are covered by managed care or fee-for-service health plans. This body 
of research consistently indicates that access difficulties occur most 
frequently among those reporting the most severe disabilities, those in 
the poorest health, and those with the fewest monetary resources.
     Demonstrated that a substantial percentage of individuals 
with moderate to severe disabilities do not have systematic access to 
preventive medicine and screening services.
     Led to the adoption of a new policy statement by the 
Medical Advisory Board of the National Multiple Sclerosis Society, 
which recommends rehabilitation as a necessary component of quality 
health care for people with MS at all stages of the disease.
     Led to the adoption of the ``Living Well With a 
Disability'' health education curriculum by a large health plan in 
California that serves 9,500 individuals with disabilities.
     Increased the interest and commitment among some State 
Departments of Mental Health to adopt recovery-oriented rehabilitation 
systems for persons with mental illness.

Research Agenda

    At the individual level, NIDRR will fund research that supports the 
development and evaluation of new interventions, products, devices, and 
environmental adaptations aimed at improving the health status and 
functional abilities of people with a wide range of disabling 
conditions. Many of these new interventions will address the needs of 
people who are aging with disability, with particular emphasis on 
minimizing secondary conditions. To aid in the evaluation of these new 
interventions, NIDRR also will fund research that leads to the 
development of the next generation of valid and reliable measures of 
health and functional status among people with disabilities.
    These new measures will be applicable in a wide variety of clinical 
and community settings, and will incorporate consumer perspectives in 
order to assess the extent to which health status and functional 
capacity relate to the ability to perform valued activities in the 
community. NIDRR will conduct research that identifies effective 
methods for translating data from these new outcomes measures into 
information that can be used to inform decisions made by consumers, 
payers, provider organizations, and clinicians.
    At the systems level, NIDRR will fund research that will generate 
new knowledge about the systematic causes and consequences of 
substandard access to rehabilitation, health care and mental health 
care services for people with a wide range of disabling conditions. 
This research will scientifically identify and evaluate the 
effectiveness of specific service delivery approaches and reimbursement 
models aimed at minimizing physical, social, and economic barriers to 
the full spectrum of health, mental health, and rehabilitation services 
that are needed by people with disabilities.
    Thus, NIDRR's research agenda in the area of health and function is 
designed to:
     Increase the number of validated new or improved methods 
for assessing function and health status.
     Increase the number of interventions, products and devices 
demonstrated to be efficacious in improving health and function 
outcomes in targeted disability populations.
     Increase understanding of the underlying structures and 
processes that facilitate or impede equitable access to rehabilitation 
and physical and mental health care by people with disabilities.

Technology for Access and Function

Overview

    Everywhere, Americans are using technology to make their lives 
easier, more enjoyable, and more productive. Americans with 
disabilities, however, depend upon technology for much more than 
convenience or a competitive edge. Technology plays a vital role in the 
lives of millions of Americans with disabilities by helping them to 
overcome functional and cognitive deficits, thus enabling them to lead 
more independent, secure, and productive lives. In the past, persons 
with significant disabling conditions often were considered to lack 
potential for habilitation or rehabilitation and were subsequently 
consigned to institutions or segregated facilities such as nursing 
homes, denying them the opportunity to live full and meaningful lives. 
In 2004, barely three decades after the birth of rehabilitation 
engineering, individuals with significant disabilities are able to 
live, often independently, in their own homes, and to participate in 
society in meaningful and productive ways.
    Advances in science and engineering have had an extraordinary 
impact on all areas of disability and rehabilitation.

[[Page 43543]]

Research has emerged from a period focused primarily on impairment to a 
period that focuses on a broad range of issues of function and access. 
NIDRR's leadership in rehabilitation engineering and assistive 
technology development has played a major role in creating technology 
for use in rehabilitation services, for use by individuals with 
disabilities to conduct their daily lives, and to inform policy and 
adapt environments to meet the needs of persons with disabilities.
    NIDRR's Logic Model depicts technology as encircling the goals of 
sustaining health and function, employment, and participation, because 
technology is a critical contributor to successful outcomes for persons 
with disabilities in all these areas. This section of the Plan 
discusses the societal and scientific contexts of disability technology 
research, and describes its applications at the individual and systems 
levels. At the individual level, the primary focus is on assistive 
technology devices; at the systems level, the areas emphasized include 
environmental modifications and accessible IT. Also included are 
instruments for use in medical and rehabilitative interventions, such 
as tools for diagnoses, assessments, and therapeutic interventions.

The Context for Research on Technology for Access and Function

    NIDRR is well positioned to continue its leadership in 
rehabilitation engineering and assistive technology research. NIDRR 
maintains an environment in which rehabilitation engineering and 
assistive technology research is part of an institutionalized continuum 
that includes related medical, clinical, public policy, psychological, 
economic, vocational and social research. NIDRR continues to promote 
the value of rehabilitation engineering and assistive technology 
research while raising the national conscience about the value of 
research relating to people with disabilities.
    Advances in basic biomedical science and technology have resulted 
in new opportunities to enhance the lives of people with disabilities. 
Recent advances in biomaterials research, composite technologies, 
information and telecommunication technologies, nanotechnologies, micro 
electro-mechanical systems (MEMS), sensor technologies, and the 
neurosciences provide a potential wealth of opportunities for 
individuals with disabilities and should be incorporated into research 
focused on disability and rehabilitation.
    NIDRR supports technology-related research at both individual and 
systems levels. At the individual level, assistive technology is used 
to enhance the physical, sensory, and cognitive abilities of people 
with disabilities and to assist them to participate in and function 
more independently in the home, at work, in recreational settings, and 
at cultural and religious events. At the systems level, technology R&D 
activities are applied in ways that enhance community integration, 
independence, productivity, competitiveness and equal opportunity by 
mitigating or eliminating barriers found in large social systems such 
as public transportation, telecommunications, IT, and the built 
environment.
    Assistive technology often is described as either ``high tech'' or 
``low tech''. High tech generally encompasses devices that are complex, 
and often expensive, to produce and use, while low-tech devices are 
those that often can be made at home or in a hobbyist's workshop, and 
are simple to create and operate. One NIDRR researcher frequently 
states that what is needed is ``not high tech or low tech, but the 
right tech'' to meet the needs of a specific individual.
    Most assistive technology for people with disabilities falls into 
the category of orphan technology because of the specialized nature, 
limited demand, and consequent limited markets. This translates into 
reduced economic rewards for manufacturers. Strategies to address the 
problem of small markets include universal design and capitalizing on 
the growing recognition that many improvements intended for people with 
disabilities serve similar functions for others. For example, closed 
captioning is useful to all in noisy environments like airports, and in 
improving English literacy; curb cuts improve access for people pushing 
baby carriages or luggage; and voice recognition technologies are used 
throughout the Nation's telecommunications systems.
    Consumer participation in rehabilitation engineering and assistive 
technology research is vitally important. Without end-user input, 
products tend to be developed in a vacuum; invariably, such products 
miss critical elements of design that facilitate adoption and 
successful use by persons with disabilities. The incidence of 
abandonment of assistive devices has been distressingly high throughout 
the history of the field. There appears to be a variety of reasons for 
abandonment, including: Poor fitting; mismatch to the user's needs; 
inadequate training in use of the device; equipment failures; objection 
to size, appearance or cumbersomeness of the device; and individual or 
cultural beliefs and values. Inherent in poor design and mismatch, in 
particular, is the paucity of customer reference or consumer 
involvement at each level of product development. In order for products 
to gain widespread acceptance and adoption, there must be detailed and 
exacting analysis of user feedback at each stage of product evolution, 
especially during the earliest stages of development. To continue use 
of the device, the consumers must find that the functional gains 
brought by the device outweigh the various inconveniences.
    In sum, the principal function of technology research is to support 
the end-user outcome of participation, including employment, community 
integration and independent living, and the maintenance of health and 
function.

Accomplishments

    The outputs of recent NIDRR-supported research, along with recent 
advancements in the field of technology as a whole, serve to describe 
the state-of-the-science and to indicate the most promising areas for 
future NIDRR investments.
    Universal design principles have been incorporated into IT systems 
to create accessible public information kiosks, electronic voting 
systems, ATMs, postal kiosks and airport information systems. Universal 
design principles can be applied to the built environment, IT, 
telecommunications, transportation, and consumer products. These 
systems are basic to community integration, education, employment, 
health and economic development. The application of universal design 
principles at each step of the R&D process would incorporate the widest 
range of human engineering factors into technological systems. 
Universal design applications may result in the avoidance of costly 
retrofitting, a wider market base, and cost stability or reduction over 
time. NIDRR has taken a leadership role with regard to the development 
and promulgation of universal design principles that can be applied to 
the built environment, telecommunications, IT, transportation, consumer 
products and the World Wide Web.
    The IT revolution is fundamentally altering the way Americans work, 
purchase goods and services, communicate and play. Today, one can 
access information using any number of electronic devices and networks, 
including computers connected to ``plain old telephone lines'' (POTS), 
televisions connected to cable or digital

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satellite networks, cellular telephones or wireless hand-held personal 
digital assistant devices. Unlike earlier information technologies 
(i.e., print, radio, telephone, television and telefax), mobile 
communications networks, the Internet and the World Wide Web did not 
seep into our daily lives gradually--rather, they exploded onto the 
scene. While the economic impact of this transformation has not been 
fully evaluated at either the individual or systems level, it is 
significant. The ubiquitous nature of IT brings with it a host of 
opportunities as well as challenges--especially for people with 
disabilities.
    NIDRR, through its network of grantees, has provided critical 
expertise and leadership for policy, regulatory and standards 
development related to wheelchairs, wheelchair restraint systems, and 
wheelchair seating systems. Specifically, NIDRR-sponsored researchers 
have created standards for wheelchair safety in motor vehicles, for 
docking devices for public transit, and for measuring and testing 
wheelchair seating component strength, seating posture and cushion 
design. Other NIDRR-sponsored research resulted in the development of a 
manual entitled ``Landmarking Manual for 3-D Anthropometry'' to enhance 
and expand a prototype database of individuals who use both powered and 
manual wheelchairs.
    NIDRR researchers identified problems with reproducibility of the 
standard measure (ANSI C.63.19) used by the Federal Communications 
Commission (FCC) as a basis for its rule on wireless phones and hearing 
aids, and developed consumer guidance for hearing aid wearers. NIDRR-
sponsored research resulted in a consumer-tested tool for evaluation of 
TTY error rates over digital wireless phones. This tool has been 
transferred to industry, where it is now the industry standard 
measurement tool. The first Web guidelines (Mosaic Access Guidelines, 
Unified HTML Accessibility Guidelines) were developed and adopted by 
the World Wide Web Consortium (W3C) as the starting point for their Web 
Content Accessibility Guidelines work. Representatives from several 
RERCs have been working with the International Committee for 
Information Technology Standards (INCITS) on the development of the V2 
interoperability standards for augmentative and alternative 
communication, assistive technology, and IT.
    Related to technology for hearing, NIDRR researchers developed 
instrumentation for the objective measurement of certain types of 
tinnitus. The rate of growth of evoked otoacoustic emissions with input 
signal level is abnormal in the frequency region of the tinnitus. 
Differences in the growth functions provide a means for identifying and 
measuring different forms of tinnitus. The instrument can be used to 
obtain objective measurements of tinnitus generated in the auditory 
periphery.
    NIDRR's technology research is well situated to contribute to the 
realization of goals in the three outcome areas. Research on technology 
to support employment has led to the creation of a model system for 
applying ergonomic technologies to accommodate disabled and elderly 
workers, developed tools for evaluating workers and jobs, and developed 
ergonomic solutions for disabled workers.
    Research on technology to support health and function led to a 
simple yet highly functional prosthetic hand for children, and a novel 
transtibial prosthetic socket fabrication technology that greatly 
reduces the time and money needed for manufacture of prostheses. Other 
research has produced novel phone features such as ``Touch One to 
Call'' and ``Flip to Call'', which allow individuals who have 
significant cognitive impairments to use mainstream phones; an 
instrument for cost-effective early detection of hearing loss based on 
evoked otoacoustic emissions in the ear canal; and a technique for in 
situ measurements of hearing aid distortion, internal noise and other 
forms of interference in a hearing aid.
    Research on technology to support participation and community 
living resulted in the design of an affordable universally designed 
kitchen, an adjustable height bathroom vanity, universally accessible 
laboratory furniture and an easy to use screen door handle; and also 
created the first cross-disability accessible building entry system. 
Implemented first in public housing in San Francisco, that system 
allows access to the building directory and entrance security by 
individuals with low vision, blindness, physical disabilities, hearing 
impairments, deafness, and reading disabilities.

Research Agenda

    NIDRR will continue to further the development and application of 
universal design principles to promote the full participation of people 
with disabilities in mainstream society. As the American population 
ages and the associated prevalence of disability increases over the 
course of the next 20 years, the importance and visibility of universal 
design applications will be greatly enhanced. These applications will 
include universally designed homes, buildings, vehicles, communication 
devices, media interfaces, entertainment venues, and other advances 
related to all aspects of life. These products and environmental 
adaptations will be universally designed for use by people of all 
ability levels, so that people can continue to lead active lives in 
their communities following the occurrence of trauma- or age-related 
disabilities.
    NIDRR will sponsor research to improve and build upon disability-
specific products and environmental adaptations that have been 
developed to enhance participation and community integration. That will 
include the improvement of current augmentative communication 
technology so that it is smaller, easier to use, and provides a more 
life-like human voice for its users.
    NIDRR research will address the principal function of technology, 
to support the end user outcome of participation. This requires 
research on techniques to enhance use and reduce abandonment by 
emphasizing consumer investment at each level of product development, 
including studies that illuminate potential population-specific factors 
(e.g., behavioral patterns, cultural and societal values, or other 
variables). Because most assistive technology for disabled individuals 
falls into the category of orphan technology and is of a specialized 
nature, researchers often do not consider this cost-effective product 
development and employers sometimes do not consider this as a cost-
effective mechanism for retaining injured workers or accommodating 
potential employees.
    NIDRR will sponsor research that builds upon an understanding of 
the impact of economic factors on technology development, production, 
availability, and use, including studies that enhance understanding of 
the determinants of technology development and transfer, and use within 
specific industries or community environments. All of these factors 
must be considered within the realm of technology R&D, and in some 
instances across other areas of the NIDRR research agenda. Increasingly 
R&D researchers will be required to pay attention to environmental 
issues, societal factors and cultural norms during the research and 
product development process, particularly in an environment where 
globalization influences outcomes for the technology market and 
changing demographics dictate technology needs. NIDRR intends to 
benefit from this international research agenda by providing the 
opportunity for

[[Page 43545]]

researchers around the world to collaborate on product development and 
to examine technology needs through the lens of the international 
community. This creates a critical mass with related scientific 
expertise, leading to possibilities for new discoveries and information 
that otherwise would not benefit people with disabilities in this 
nation.
    NIDRR's research agenda in the area of technology for access and 
function is designed to:
     Strengthen the science basis of rehabilitation engineering 
and assistive technology through the development of theories, validated 
measures and appropriate research methods for the identification and 
solution of problems to be addressed through technology.
     Increase the number and availability of empirically 
validated products, devices or environmental adaptations that promote 
increased mobility, interactive control and manipulation of relevant 
features of the environment and access to information and technology 
communications systems by people with disabilities to promote 
independence in the home, community and workplace.
     Increase the number of empirically based standards for 
products and devices and the built environment to ensure safety, 
accessibility and usability by and for people with disabilities.

Disability Demographics

Overview

    In carrying out its statutory mandate to work with other Federal 
agencies to produce demographic and statistical data describing the 
population of Americans with disabilities, NIDRR has continued to 
support important research in disability demographics. Good demographic 
data are a critical component of NIDRR's broader mission of supporting 
research that contributes to improvements in the lives of people with 
disabilities.
    Demographic data contribute to NIDRR's mission by helping to:
     Allocate NIDRR resources among competing topical areas.
     Inform policy within NIDRR and within the Federal 
government as a whole.
     Identify potential changes in the characteristics and 
needs of the disabled population.
     Understand changes over time in disablement.
     Inform service delivery.
     Plan research to address current and emerging needs.
     Inform consumers and their families and advocates.
    NIDRR researchers strive to understand the processes by which 
individuals vary in participation and, when appropriate, to foster 
strategies or interventions that may help bridge the gap between 
preference and feasibility in an existing environment. The dynamic 
nature of ability and the continuing advances in technology, policy, 
and human resources practices offer great promise toward maximizing 
participation of individuals with disabilities in all areas of life.
    This chapter clarifies NIDRR's work in the context of disability 
demographics; and describes past activities and achievements in 
demographic studies. Examples of achievements in this area include: The 
establishment of a Disability Statistics Center; elucidation of the 
complex concept of an ``emerging universe of disability''; and 
delineation of problems and gaps in the current disability demographics 
effort. The chapter further identifies target areas for priority 
attention and presents a future agenda for NIDRR.

The Context for Disability Demographics

    Many organizations continue to collect important information about 
individuals with disabilities. At least five major national surveys are 
in existence, along with untold numbers of minor surveys and databases 
related to the use of specific programs and surveys.
    An overarching concern in disability demographics is the assessment 
of the intersection of the individual and the environment. At the 
individual level, one may note varying degrees of function, variation 
in demographic factors and variation in preferences. National datasets 
focus on measurements that allow one to describe the individual in 
isolation from his or her surroundings. At the environmental level, 
researchers are beginning to explore measures of barriers and 
facilitators to participation. Measures of participation vary, although 
sources such as the National Health Interview Survey/Disability (NHIS-
D) and the Survey on Income and Program Participation (SIPP) move 
toward evaluating the gestalt of social performance.
    A lack of standardized definitions, terminology, coding, 
classification, and measurement of disability and functioning often 
limits generalization of research findings. Extending use of research 
findings or population trends to inform policy or clinical 
interventions is limited due to the difficulty of extrapolating 
knowledge about disabilities that is gathered from a disparate range of 
data sources, classification and coding systems, and measures of 
disability. For example, it is important to estimate future potential 
demands on rehabilitation systems, but existing population data sources 
do not adequately provide for planning, development and evaluation of 
rehabilitation services and population trends. The ICF, which is 
described elsewhere in this plan, is a coding system that promises to 
allow the assessment of disability as a dynamic interaction between the 
person and the environment.
    NIDRR's mission and its measurement tools are complicated by the 
interaction of static and dynamic variables that describe the 
background of disabilities. For example, people age, health changes, 
economic circumstances vary, and accidents occur. Point-in-time data 
sources may describe facets of disability, if enough questions are 
asked, but the environmental context often is absent.
    A range of researchers and consumers of data have noted the problem 
in obtaining valid and reliable data about disability prevalence and 
its consequences. For policy purposes, the Census is a critical 
resource, as is the American Community Survey (ACS). Federal, State, 
and local planning underscore the role of the Census. Nonetheless, as 
noted by the NCD, there are methodological problems with the measures 
used in the Census.

Descriptions of the Population With Disabilities From Existing Surveys

    Due to the variety of measurement tools for disability, no simple 
answer exists to the question of how many people with disabilities are 
living in the United States. Drawing upon key national sources of data, 
overall estimates of the prevalence of disability range from five or 
six percent up to more than 20 percent depending upon the data source. 
For purposes of prevalence, 54 million Americans with disabilities is a 
figure often cited by policymakers, advocates and the media.
    Measures of disability in Federal surveys reflect a variety of 
needs across agencies for gathering such data. Data from the ACS, and 
the SIPP, both by the U.S. Census Bureau in 2002, on prevalence of 
disability show a range from 13.5 percent of adult males 18 years of 
age to 64 years of age in the ACS to 14.8 percent for a similarly aged 
population in the SIPP. Also, for example, adult females from 18 years 
of age to 64 years of age had a prevalence rate of disability of 13.4 
percent in the ACS compared with 20.1 percent in the

[[Page 43546]]

SIPP. For females 65 years of age and older, the ACS reported a 
disability prevalence rate of 43.5 percent while the SIPP reported a 
50.4 percent rate. Males age 65 and older had a 41.0 percent rate of 
disability according to ACS data and 40.4 percent according to the 
SIPP.
    It must be noted that each of the national surveys is tied to a 
program mandate other than the estimation and characterization of 
disability, especially as it is presented in the NIDRR paradigm. Major 
data collections generally are related to health status, employment 
status, benefits recipient status and program usage. Thus, it is 
understandable that they use varying definitions of disability and 
sample parameters.
    Measures of severity of disability are critical for purposes of the 
Act. Each of the national datasets can be used to estimate the 
prevalence of significant disability. Generally, limitations in 
activities of daily living (ADLs)--for example, bathing, eating and 
getting dressed--reflect the greatest severity, with limitations in 
instrumental activities of daily living (IADLs)--cooking, shopping and 
managing money--and in working also are components of severity. For 
working-age adults, working at a job or business is often a major life 
role, and work limitation figures show the impact of disability on the 
ability to work. Overall trends regarding employment and disability 
have emerged from various data sources. Generally, disability is 
associated with lower labor force participation and earnings.
    Review of the NHIS, SIPP and Census indicate variations in 
estimates, reflecting methodological differences such as question 
wording, data collection and coverage. These three data sources were 
examined for prevalence estimates of ADLs, IADLs and work limitations 
among adults aged 18 through 69. In 2000, the NHIS reported a 
prevalence estimate for ADLs of 1.8 percent, the SIPP reported 3.8 
percent and the Census reported 9.0 percent. For IADLs, the NHIS 
prevalence estimate was 4.2 percent, the SIPP was 6.2 percent and the 
Census was 9.8 percent. Looking at limitations on work, the NHIS 
provides estimates of limitations in ability to carry on work and other 
age-appropriate major activities. The SIPP and the Census also measure 
what are frequently called work limitations, with the Current 
Population Survey (CPS) sometimes being used as a source of numbers on 
``work disability.'' Again, there is variation in the questions on 
these surveys. Prevalence estimates for work limitation from the NHIS, 
the SIPP and the Census were 2.6 percent, 8.6 percent and 11.9 percent, 
respectively.
    Measures of self-care, and the need for personal assistance or 
technologies, provide rich data for understanding more severe 
disability. Exploration of such needs also highlights cultural and 
socioeconomic variations in access to help. Across data sources that 
measure need for help with personal care, such as the NHIS and the 
SIPP, there are consistent trends showing that increasing age is a key 
factor in need for assistance. Thus, aging is strongly correlated with 
disability and with the need for functional supports including 
technology and environmental access. Predicted changes in the 
demographics of the general population will have substantial impact on 
the distribution of disability and the need for specialized 
technologies to assist individuals with disabilities. The U.S. Census 
Bureau has projected substantial increases during the next several 
decades in the percentage of the general population ages 65 and older.

Emerging Universe: Population Demographics and Disability

    In its 1999-2003 Long-Range Plan, NIDRR noted a phenomenon it 
called an ``emerging universe of disability.'' The emerging universe 
was defined by changes in the distribution of disability according to 
demographic characteristics. This ``universe'' encompassed changes in 
the age, ethnic composition, income, education, and immigrant status of 
the population, as well as the appearance of new impairments, and 
different etiologies and consequences of existing disabilities. 
Research supported by NIDRR has tended to validate this construction, 
and to provide a description of the emerging universe.
    As noted earlier, certain trends are common across national data 
systems that measure disability. Individuals with disability are likely 
to have less education, less likely to be employed, more likely to be 
older, to be black or Native American as opposed to white or Asian, to 
have public as opposed to private health insurance, and to be poor or 
near poor. In addition, there is a geographic imbalance, with 
disability rates highest in the South.
    Poverty as both an input to disability and an outcome of disability 
requires better understanding. As an underlying variable, poverty may 
discourage full social participation by people who are from minority 
backgrounds and have disabilities. As Fujiura and his colleagues write, 
``across all ethnic/racial and age cohorts, rates of disability were 
higher among low income households; above the low income threshold, 
group differences were greatly attenuated. Black and Hispanic children 
with a disability lived disproportionately in low-income, single-parent 
homes.'' (Fujiura, 2000) One must disentangle economic, health and 
social risks and policies to fully understand the impact of disability 
on persons from diverse backgrounds. The flux of the general 
population, due to increasing diversity, immigration, the growth of the 
Hispanic population, and the graying of the baby boom generation, 
presents challenges to existing service systems. Emergent health 
conditions are yet another factor that introduces complexity. 
Ultimately, NIDRR researchers will need to evaluate the impact of all 
of these factors on the equalization of access, opportunity and 
successful outcomes for people with disabilities in fulfilling a range 
of social roles.

Achievements in Disability Demographic Research

     Disability Statistics Center (DSC)--NIDRR has long funded 
a DSC as a resource for researchers, policymakers, service providers, 
consumers, and others. That investment has yielded a number of key 
reports about the status of individuals with disabilities and their 
lives. In addition, through its investment in a statistics center, 
NIDRR has played a significant role in C-B by nurturing disability 
researchers to understand and analyze demographic data.
     Emerging Universe of Disability--Description and increased 
understanding of the emerging universe of disability, which refers to a 
disabled population that is shaped by several elements including 
demographic changes in age, immigrant status, and other socioeconomic 
factors; new types of conditions; consequences of treatments of 
existing conditions; and differential distribution of conditions and 
their consequences. NIDRR researchers' work in examining and explaining 
this phenomenon has helped to increase attention in the last six years 
on the unique needs of this ``emerging universe,'' including a focus on 
cultural and economic factors affecting disability.
     Publications of Disability Data--In addition to reports 
from its DSC, NIDRR has funded a series of Chartbooks that present 
important data in formats that are accessible to those who are not 
researchers. Most recently, NIDRR has published a Chartbook on Mental 
Health and Disability.

[[Page 43547]]

     Improved Measurement--NIDRR has been a key player in the 
development, dissemination, and adoption of the shift in 
conceptualization of disability from a medical to a sociomedical model. 
As part of that work, NIDRR grantees have contributed to the 
development of improved survey questions that measure issues of health, 
well-being, and participation as they relate to individuals with 
disabilities. In addition, NIDRR has played a significant role in the 
development of the ICF that offers potential to facilitate better 
understanding of individuals with disabilities across a variety of 
disparate data sources.
     Primary data collection--NIDRR supports data collection in 
a variety of venues. Through its model systems, NIDRR collects data 
that addresses the efficacy of a variety of rehabilitation methods. 
NIDRR grantees have collected population-based data that describe 
specific populations such as individuals with MS or other conditions. 
Recently, NIDRR designed and funded a national survey regarding the use 
of and need for assistive technologies.
     Interagency collaboration--Through its leadership in the 
ISDS and other mechanisms, NIDRR has been a leader in promoting the 
collection of data about individuals with disabilities using a variety 
of Federal surveys. NIDRR has provided both financial and intellectual 
support for such efforts.

Research Agenda

    NIDRR's demographic performance goals are intended to increase the 
ability to describe the characteristics and circumstances of people 
with disabilities and their family members by:
     Improving the ability to collect disability data through 
the joint development of a standard nomenclature and methodological 
standards, including sampling, in collaboration with other Federal and 
non-Federal entities.
    As a key objective, NIDRR will continue to support efforts that 
utilize multiple sources to examine the current state of affairs and 
trends that allow the projection of future needs. It is important to 
draw upon the diversity of available information. In part, existing 
data sources are sometimes contradictory, suggesting an intermediate 
need to evaluate the reasons for the inconsistencies. No one current 
source can provide all the important information needed about key 
inputs such as PAS, assistive technology, environmental facilitators 
and barriers, and their interactions. In the absence of a valid and 
reliable national disability survey, meta-analysis threads together the 
best available sources of topic-specific data.
    In conjunction with other Federal partners, NIDRR will support the 
methodological work that yields the tools needed to implement a 
national survey of disability across the life span. The 1994-95 NHIS on 
Disability is a good model for future efforts, with the necessary 
addition of consumer experts to evaluate the content areas. Of note is 
that efforts to develop a national disability survey will be of great 
value even if such a large survey cannot be fielded in the foreseeable 
future. Each component of a cohesive national survey will have utility 
in surveys that are agency or mission specific. Resolution of complex 
sampling issues will benefit any survey that must include a 
representative proportion of individuals with disabilities. Development 
of topical modules with reliable and valid measures will yield 
instruments that can be used in a variety of data collections so that 
information is available about varying subgroups or the interaction of 
a variety of factors.
     Enhancing the understanding of the number and 
characteristics of people with disabilities through targeted studies of 
existing data.
    Through much of its research portfolio, NIDRR will continue to 
support secondary analyses that lead to understanding of the basic 
life-cycle events and experiences of people with disabilities. Parsing 
the population of people with disabilities through cross-tabulation 
with other demographic variables will continue to be a focus. Linking 
the national and smaller data sources will be a priority. In the near 
and mid term, NIDRR will continue its work to evaluate and analyze 
existing data.
     Improving the science of disability demographics by 
developing and/or improving the measures of the interaction between 
technology and the physical environment, the social environment, and 
social policy as they affect people with disabilities.
    NIDRR will stimulate the development of new measures of the 
interaction between technology and the physical environment, the social 
environment and social policy. Such data are important for evaluating 
policies, including those enumerated in the NFI. Researchers must 
develop measures and indicators to assess the impact of environmental 
barriers and facilitators and encourage widespread use of these 
measures to evaluate how technology enables people with disabilities to 
succeed in school, work, and community and lead more productive and 
rewarding lives.
    The ultimate goal of NIDRR's disability demographics effort is to 
generate new information that can be used by intermediate and intended 
beneficiaries who are working to identify and eliminate disparities in 
employment, participation and community life, and health and function. 
Personal care, work, culture, and health are several of the rich areas 
that NIDRR and its grantees have studied. First, the concern with data 
threads through virtually all components of the study of disability. In 
order to understand needs and impacts, and to evaluate outcomes, 
quantitative analyses play a key role. In addition, one must often 
consult multiple sources of data to develop range estimates or compare 
trends. NIDRR has long funded studies that mine data to address the 
full range of social, health, and economic facets of disability and 
that compare findings across data sources. There are significant 
correlations with disability, such as aging, and there are a variety of 
links between disability and culture, race, and ethnicity. Supporting 
multiple sources for examining the current state of affairs for people 
with disabilities will provide important data that can be used to 
advance many areas of disability and rehabilitation research.
    Research has identified gaps in data, such as the sparse 
measurement of the interface between individual and environment. NIDRR 
will nurture the methodological work that will address those gaps. 
Along with improved measures, there is much to be done to address 
problems in sampling and data collection. There is a great need to see 
the effects of long-term impacts of interventions to facilitate 
participation. In particular, research must address geographically and 
ethnically diverse populations to ascertain differences in needs.
    To be useful for policy, research, programs, and services, data 
must be grounded in an appropriate organizational framework, such as 
the ICF. The ICF is a scheme organized around function, activity, 
participation, and environmental context. To evaluate the potential 
uses of the ICF, a variety of measurement tools and data systems must 
be examined in addition to further evaluation of the implications of 
the classification system for U.S. populations.

II. Capacity Building

Overview

    This chapter addresses a critical research building block, C-B,

[[Page 43548]]

recognized as one of the three short-term arenas through which NIDRR 
achieves its goals. An important function of this chapter is to define 
C-B and its key dimensions in a context that reflects NIDRR's mission. 
The following sections describe the multidimensional aspects of C-B, 
provide a brief review of selected NIDRR C-B accomplishments, and 
discuss future directions and specific goals and objectives in C-B.

Definition of Capacity Building

    As illustrated in the Logic Model (see Appendix 2), C-B is 
foundational for NIDRR's agenda. NIDRR C-B includes three major 
components: (1) Improving and building a larger and better quality 
supply of individuals to conduct research, (2) building a research 
infrastructure at institutions to carry out research and related 
activities, and (3) increasing the ability of consumers to interpret 
and use research and to play an active role in the research process.
    At the individual level, NIDRR focuses on C-B to ensure a source of 
researchers to carry out the research agenda. In addition, NIDRR C-B at 
this level enhances the ability of researchers to generate useful new 
knowledge. NIDRR historically has sought to increase the number of 
individuals from underrepresented groups in this effort, particularly 
those with disabilities. At the organizational or systems level, NIDRR 
C-B supports the framework for carrying out individual level research 
work. At a systems level, all NIDRR programs may be said to involve C-
B, in that NIDRR funding is intended to increase the capacity of the 
field to conduct high quality research directed at the long-term goals 
and objectives identified in the Logic Model. Another important 
dimension of NIDRR C-B is the development of strategies to assist 
individuals with disabilities and their families, as well as 
practitioners, to use research findings to assist with choices of 
interventions and improve consumer involvement in the research process. 
This process begins at research development and extends to 
implementation, evaluation and dissemination.

Context for Capacity Building

    NIDRR's principal statutory mandate for training is to support 
advanced instruction for researchers and service providers. Consistent 
with this mandate, the 1999-2003 NIDRR Long-Range Plan defined C-B 
building as multidimensional and involving training for those who 
participate in all aspects of the disability research field, including 
scientists, service providers and consumers. NIDRR also has a mandate, 
strengthened in the 1992 Act amendments, to train peer reviewers, 
particularly consumers, and to train consumers to apply new research 
knowledge and to use assistive technology.

Individual Level

    At the individual level, NIDRR's current C-B activities focus 
primarily on support for individuals, most of whom already have 
selected research as a career, and have completed doctoral studies. 
Both the Fellowship program and the ARRT program provide support to 
individuals who fall within this category. While this support assists 
with developing careers of young investigators, it may not be optimal 
for supporting other research C-B, particularly with regard to 
recruitment and career development for individuals with disabilities or 
those from underrepresented racial and ethnic populations. NIDRR 
acknowledges the need for supporting increased development of research 
as a career at the secondary school and undergraduate educational 
levels, particularly focusing on students with disabilities and those 
from diverse cultural groups. NIDRR will look for opportunities to 
partner with other Federal agencies on research initiatives in this 
area.

Systems Level

    NIDRR has several program mechanisms by which it funds C-B. The 
programs include the ARRT program, Fellowship program, NIDRR Scholars, 
Minority Development/Section 21 program, RRTCs, and RERCs.
    ARRTs provide research training that integrates disciplines, 
teaches and enhances research methodology skills, and trains 
researchers in disability and rehabilitation science. These training 
programs operate in interdisciplinary environments and provide training 
in rigorous scientific methods.
    The Fellowships augment scholarly careers in the field, and 
function in an integrative capacity to define new frontiers of 
disability and rehabilitation research. This program provides 
opportunities for interaction among the fellows and for exposure to 
established researchers and policymakers. Additionally, fellows have 
the opportunity to participate in an annual research dissemination 
program where their findings are presented and discussed with research 
experts.
    The NIDRR Scholars program recruits undergraduates with 
disabilities to work in NIDRR-funded research centers and to 
participate in research activities that expose them to disability and 
rehabilitation research issues, while at the same time providing work 
experience and income. This program is an innovative approach aimed at 
generating interest in research careers for individuals with 
disabilities and other underrepresented populations.
    The Minority Development program focuses on research C-B for 
minority entities such as Historically Black Colleges and Universities 
(HBCU) and institutions serving primarily Hispanic, Asian and American 
Indian students. Program administration activities include strategies 
to assist minority entities with networking activities focusing on 
collaboration, exchange of expertise and advanced training.
    Training activities conducted by funded entities such as those 
participating in the RRTC and RERC programs capitalize on the existing 
critical mass of expertise and knowledge to provide:
     Experiential and academic training for researchers and 
clinicians at the undergraduate, graduate, and post-graduate levels, 
including continuing education activities.
     In-service training for rehabilitation practitioners.
     Training for consumers, their families, and 
representatives in implications and applications of new research-based 
knowledge.

Accomplishments

    NIDRR has built capacity for research in a number of ways. Most 
obvious is its investment in C-B programs to increase the skills of 
qualified researchers in the disability and rehabilitation field. The 
NIDRR-supported programs also have had the effect of increasing the 
numbers of disability researchers who are individuals with disabilities 
or members of minority populations. The ARRT program, while intended to 
promote research contributions in the long term, focuses primarily on 
increasing the number of individuals qualified to conduct 
rehabilitation research. These may include professionals in clinical 
settings who wish to sharpen their research skills through institution-
based training programs. NIDRR has funded 29 programs under this rubric 
since 1992. The Fellowship program, while encouraging individuals to 
increase their expertise in research through the fellowship experience, 
focuses directly on promoting contributions to the knowledge base. 
There have been more than 200 fellows funded since the inception of 
this program with the first ``class'' in 1983. The fellowship 
experience allows for an intensely focused one-year research activity 
that is investigator-initiated and involves

[[Page 43549]]

independent research. This fellowship program has resulted in numerous 
peer-reviewed journal articles, books and book chapters, as well as 
refinements in instruments originally developed in other settings.
    Most of those who have received funding under these two programs 
have remained in the disability and rehabilitation research field. In 
recent years, there has been a ``progression'' from those who received 
structured mentoring under the ARRT program to their place as full-
fledged principal investigators in NIDRR centers or other programs. 
However, the fellowship opportunity allows for the support of 
individual researchers, including those not based at universities, and 
the flexibility of this approach and the camaraderie engendered in this 
program have received considerable praise from former participants.
    NIDRR has made a major investment in the infrastructure of research 
through development of the model systems programs in SCI, TBI, and 
burn. These model systems have made major advancements in the capacity 
to conduct care for individuals with these conditions. Models systems 
also have contributed to C-B by putting into place a system for 
conducting multicenter trials.

Future Agenda

    The capability to conduct first-rate research depends on a 
commitment to providing opportunities for learning the multiple skills 
required for designing scientifically sound studies, selecting 
appropriate research methods, analyzing data, and interpreting and 
reporting findings. NIDRR intends to support C-B activities that 
incorporate training in the application of research findings to the 
real-world needs of people with disabilities and the entities that 
impact their lives, including policymaking. Training aimed at 
transferring research findings into practical use is critical for C-B 
at the organizational and individual levels. However, the training must 
take into account scientific advancements across relevant disciplines, 
the state-of-the-science, the emerging universe of disability, cultural 
diversity, and the changing demographic profile of the Nation; 
otherwise this training is no longer relevant and cannot contribute 
effectively to research C-B.
    NIDRR supports diversification initiatives and training that will 
attract and increase the participation of researchers, particularly 
individuals with disabilities and those from diverse cultural 
backgrounds, and will provide them with high level preparation. NIDRR 
will place increased emphasis on institutional C-B and building 
research infrastructure, in addition to developing a plan of evaluation 
of C-B. NIDRR C-B will extend to increased training for KT of research 
and the expansion of multidisciplinary research.
    NIDRR has invested in C-B programs to increase the number and 
skills of researchers qualified to work in the disability and 
rehabilitation field. There are a number of external factors that may 
affect the success of an effort to build capacity in research, 
including the anticipated availability of funding for research, the 
potential for increased attention to preparation for service delivery 
at the expense of research knowledge and skill building; and the 
changing demographic profile of the student, professional and 
disability communities. Understanding these issues via research 
activities can inform training and practice needs, and help to ensure 
that policies are sensitive to these concerns.
    Thus, NIDRR intends to:
     Enhance the capacity to solve problems in creative, state-
of-the-art ways by encouraging researchers from different cultural, 
racial, and academic backgrounds to conduct culturally-competent 
research in new settings that represent the contextual experiences of 
individuals with disabilities and stakeholders.
     Enhance cross-disciplinary and advanced research training 
opportunities in disability and rehabilitation-related fields for 
rehabilitation professionals, qualified individuals, including students 
with disabilities and individuals from minority backgrounds.
     Increase the capacity of persons with disabilities, family 
members, and advocates to understand and use research findings through 
training and the application of participatory action research 
principles.
     Strengthen its research portfolio by increasing the number 
and type of partnerships with Federal and non-Federal research and 
development agencies that conduct clinical trials and experiment with 
innovative approaches to R&D infrastructure development.
    Various projects have been funded to study the cultural and 
contextual nature of disability experiences. These projects may help in 
training the field to design its research efforts using a framework 
different than the traditional view of disability, but also may put 
forth new ways in which disability research is conducted. For example, 
a recent research priority focused on generating greater emphasis on 
promoting collaboration between minority and non-minority entities and 
examining the implications of traditional methods, models, and 
measurement for traditionally underrepresented populations. The 
changing profile of the disabled population will require intercultural 
competence, and engaging collaborative research is one approach to 
meeting those needs. Essential to this process of improving 
collaboration is the necessity to identify factors that are effective 
in facilitating collaborative research endeavors across disciplines and 
the research community, including partnerships between minority and 
majority entities and relevant disciplines. The community-based 
research initiative, which fosters partnerships between academic 
institutions and disability organizations and advocates, illustrates 
this point.
    Other priorities in examining the contextual nature of disability 
include studies that illustrate the influence of the intersection of 
the person and environment; exploration of context and culture with 
regard to specific disability populations; and topics such as assistive 
technology, disability rights, health promotion, family relationships, 
and community reintegration. Adding research that examines the 
evolutionary processes of policy, science, practice, and business or 
clinical culture can be an important element in creating a better 
understanding of the factors that shape both professional and 
disability experiences. Preparing researchers to examine environments 
where advanced technology, emerging disabilities, economics, and other 
factors influence training, practice and rehabilitation outcomes can 
help to improve the development, planning, implementation, and 
evaluation of programs to promote disability rights, health 
maintenance, family relationships, and community reintegration. NIDRR 
anticipates continued leveraging of the strong base of activity of 
NIDRR's RRTCs and RERCs serving as Centers for National Excellence in 
rehabilitation research, to further enhance programmatic C-B through 
these centers.

III. Knowledge Translation

Overview

    The KT process actively engages disability researchers, researchers 
from other disciplines, service providers, policymakers, and persons 
with disabilities and their families in the interchange, synthesis and 
application of rehabilitation research knowledge. KT activities are a 
central part of NIDRR's mission and provide an important pathway for 
improving the quality of life for individuals with

[[Page 43550]]

disabilities. Outlining a central role for KT in this Plan is 
consistent with NIDRR's authorizing statute as well as the expressed 
interests of stakeholders collected throughout the long-range planning 
process. It also builds upon the strong history of KDU activities 
conducted by NIDRR and its grantees. NIDRR will focus its specific KT 
activities in the domains of employment, home and community, health and 
function, and technology.

Definition of Knowledge Translation

    For NIDRR, the definition of KT refers to the multidimensional, 
active process of ensuring that new knowledge gained through the course 
of research ultimately improves the lives of people with disabilities, 
and furthers their participation in society. The process is active, as 
it not only accumulates information, but it also filters the 
information for relevance and appropriateness, and recasts that 
information in language useful and accessible for the intended 
audience. KT includes transfer of technology, particularly products and 
devices, from the research and development setting to the commercial 
marketplace to make possible widespread utilization of the products or 
devices.
    NIDRR is particularly focused on ensuring that disseminated 
information is of high quality and based on scientifically rigorous 
research and development. To advance its dissemination of high quality 
research, NIDRR may analyze aspects of successful procedures used for 
review, synthesis and dissemination of research findings by other 
agencies for potential usefulness in NIDRR KT activities. NIDRR is 
especially interested in using models that encourage a thorough 
discussion of research findings among researchers, with emphasis on 
rigor and application possibilities. NIDRR also wants to ensure that 
potential end users of information will have the information they need 
to judge the quality of research and development findings and products, 
from NIDRR and other agencies, and the relevance of these findings and 
products to their particular needs.
    The most appropriate target audience for KT will be determined in 
large part by the primary outcome arena that is under consideration. 
For example, research on theories, measures and methods will find a 
primary audience among researchers and practitioners, whereas the 
primary target for activities related to new and improved products and 
environmental adaptations will be people with disabilities. The scope 
of KT as envisioned in this Plan covers a wide range of activities and 
involves a variety of mechanisms, including publication of research 
results, determination of the effectiveness of research applications, 
development of targeted materials, and the transfer of technology.

The Context for Knowledge Translation

    The Institute has had a mission to disseminate its research 
findings, and promote their utilization with a range of audiences, 
since its establishment. As NIDRR expanded its conceptions and practice 
of KT, the focus shifted from the perception of dissemination and 
utilization as a linear, mechanical process of information transfer--in 
which knowledge is packaged and moved from one place to another--to a 
highly complex, nonlinear, interactive process, critically dependent on 
the beliefs, values, circumstances and needs of intended users. This 
refocusing provided a key element for successful KT activities 
potential users now take an active role in acquiring and using new 
knowledge. This change has paralleled the progressive improvement in 
models used in disability research that position people with 
disabilities in a highly integrative role as opposed to a non-
participatory role.
    Most NIDRR centers and projects now fund information and 
dissemination activities, with these activities becoming more 
coordinated and integral to planning in recent years with the 
establishment of a national center to disseminate NIDRR grantees' 
research. NIDRR also has carried out specific KT activities through 
grants and contracts monitored by NIDRR staff.
    NIDRR intends that every new research project funded under this 
Plan should develop and share new knowledge to improve the lives of 
citizens with disabilities. In the United States, NIDRR and many other 
research agencies have endeavored to make scientific results accessible 
to all citizens, particularly results of Federal government-supported 
research. Several science-related institutions including the National 
Academy of Sciences (NAS), the National Science Foundation (NSF) and 
the National Institutes of Health (NIH) have developed portals of 
information that present research results, in various formats, to a 
large numbers of users. Since 1994, NIDRR has funded the National 
Center for Dissemination of Disability Research (NCDDR) for many of its 
KT activities. Most of the NCDDR work is done through databases and Web 
pages linked to other critical sources of research information. 
Researchers, educators, service providers, and individuals with 
disabilities use these easily accessible sources.

Challenges in Knowledge Translation

    The biggest challenge faced by NIDRR, and other major research 
agencies, is to diversify KT activities to better serve various 
constituencies. While research organizations generally are good at 
peer-to-peer dissemination, the leap required to move from research to 
practice can be much more difficult. This process demands filtering the 
information, determining the quality of the findings (source and 
content), and aggregating research information from a number of NIDRR 
research venues (no single project addresses all aspects of a problem). 
It also requires a clear determination of how the research was 
conducted and how it might fit the user's needs. KT also requires the 
development of expertise in a number of media areas and development of 
strategies that could be employed to reach end users. The tasks of 
translation require regular contact between the translator and the 
original researcher. While a researcher might not be the best person to 
do the final dissemination, his/her involvement is essential to KT. The 
research must envision the target system in the beginning of research, 
the creation of a dissemination plan, and the development of a plan to 
evaluate the outcome.
    NIDRR intends to assist people with disabilities and their 
families, and the general public, to efficiently access information. 
This may require ``mediated navigation,'' that is, individuals may need 
an intermediary to help them in the search for answers to their 
questions. Some of the most common intermediary roles are librarian, 
information specialist, knowledge management specialist, database 
coordinator, or trainer. Similarly, many stakeholders may benefit from 
appropriate translation of information into accessible forms. The use 
of multiple mechanisms for dissemination will be employed including 
knowledge sharing practices that make the maximum use of Web servers, 
subscriptions systems, e-forums, feedback systems, databases, 
Communities of Practice (COP), virtual libraries and other solutions 
related activities. COPs involve groups of people who share a concern, 
set of problems, mandate, or sense of purpose. COPs serve to reconnect 
individuals with each other in self-organizing, boundary-spanning 
communities. COPs complement existing information structures by 
promoting collaboration, information exchange, and sharing of

[[Page 43551]]

best practices across boundaries of time, distance, and organizational 
hierarchies.

Accomplishments

    For more than 20 years, NIDRR has funded several research databases 
for individuals with disabilities. These and other vehicles of KDU have 
served as important resources for consumers, practitioners, 
policymakers and researchers. NIDRR-funded databases have focused on 
applied rehabilitation research and the provision of resources to 
provide access to up-to-date information on assistive technology and 
other useful consumer information. In the last decade, NIDRR has 
refocused and strengthened its KDU effort through focusing on the end 
users of information, by capitalizing on technology and by creating a 
technical assistance resource and a network of KDU centers (KDUCs). By 
refocusing on the end users of information, the KDU program has made 
researchers increasingly aware of the need to look beyond parochial 
dissemination channels to the information needs of stakeholder 
audiences such as people with disabilities and their families, 
disability organizations, policymakers and researchers in other fields.
    The KDU program increased the outreach of grantees in many ways 
including by taking advantage of the growth of the World Wide Web and 
distance learning techniques to promote electronic dissemination. 
Through publication of Research Exchange issues on dissemination, 
reinforced by presentations at the National Association of 
Rehabilitation Research and Training Centers (NARRTC), SCI and RERC 
meetings, and technical assistance in one-on-one sessions, the number 
of NIDRR grantees with Web sites increased from 33 percent to more than 
85 percent over a five-year period. Currently, almost all NIDRR 
grantees have Web sites. By continually monitoring the sites and 
referring grantees to tools such as the Web Accessibility Initiative 
(WAI), NIDRR has seen major improvements in the accessibility of the 
grantee Web sites to people with disabilities.
    Specific KDUCs, which have focused on such topics as IL, have 
provided an array of ``translated'' material derived from NIDRR 
research. The material is presented in language that can be used 
readily by consumers. The materials produced by KDUCs have helped the 
public understand issues regarding the Olmstead decision, the 
capabilities of people with mental disabilities or illness, and the 
success that people with disabilities can have as parents. They also 
have encouraged private entities such as the Pew Foundation, to include 
disability as an issue of importance in reports and grants.
    The NIDRR KDU program also has expanded its component projects and 
increased their utility to the public by establishing a public Web site 
with about 60,000 holdings on NIDRR disability research. Instant online 
searching of that information is available. A NIDRR Program Directory 
provides descriptions on and contact information for the wide range of 
NIDRR-funded activities. A searchable online database was created to 
provide ready access to findings and results of NIDRR grantees' 
research, and is updated weekly. Through the centralization of 
information, numerous reports and data on many NIDRR grantees are 
readily available, thus reducing the need to search every NIDRR 
grantee's Web site for research outcomes. More than 1,200 resources now 
are entered in the Electronic Library, and 250 entries are in the 
Spanish version, the Biblioteca Electronica.
    In addition, NIDRR has funded the premier database of information 
on assistive technology, ABLEDATA, since 1980; it is a national 
resource for assistive and rehabilitative technology product 
information. Using the World Wide Web, the database is searched more 
than 1 million times annually, and generates telephone inquiries. The 
database offers more than 30,000 assistive technology products from 
domestic and international sources, and information on more than 6,000 
manufacturers, and has been cited as a model for the development of 
similar systems.
    To enable rehabilitation service providers to work more effectively 
with individuals born outside the United States, NIDRR funded a series 
of 11 monographs that described the cultures and customs of foreign 
countries. The 11 countries chosen for the monographs were those with 
the highest number of emigrants to the United States. The monographs 
addressed issues that are crucial for service providers to understand 
in their work to achieve successful rehabilitation outcomes with 
foreign-born individuals who have disabilities.

Future Agenda

    NIDRR is interested in developing improved ways to make information 
accessible to the research community and to disability-related agencies 
and organizations. NIDRR will continue to encourage and support 
dissemination of research information to consumers as an important 
aspect of its mission and legislative mandate. Building on NIDRR's 
solid foundation of peer-to-peer dissemination, individual centers will 
be encouraged to reach out to their constituent populations.
    NIDRR intends to strengthen the dissemination work done by its 
specific content-based KT centers and regional networks of technical 
assistance centers. NIDRR will examine the use of its regional networks 
of technical assistance centers that focus on the ADA and educational 
technology, and look at expanding their scope to include high quality 
review and discussion of research results from NIDRR researchers before 
translation and dissemination to the public. NIDRR will advance its KT 
activities by emphasizing expert judgments on the value of information 
for further dissemination; better accountability for outputs produced 
by NIDRR researchers, and improved methods for making this information 
available beyond the research community. NIDRR will support all centers 
as they maintain and disseminate information of wide relevance to 
persons with disabilities and will encourage the effective use of 
electronic transmission, accessible media, and translation into 
multiple formats. In this effort, NIDRR will focus on ways of 
publishing and disseminating research to the public that will improve 
upon the traditional dissemination tools and methods and advance the 
use of technology to promote accessible video libraries and virtual 
libraries, among other methods.

Future Research Activities

    NIDRR will further the development of a theory of KT, the 
development of measures of success, and uniform definitions and 
requirements of NIDRR grantees and contractors. These complex endeavors 
will be undertaken with support from the network of all NIDRR's DRRP 
and KT projects. The efforts will concentrate on developing mechanisms 
to learn how research results are relevant to stakeholder needs and how 
the research results can help people with disabilities improve their 
conditions--for example, achieve better access to education, 
employment, independent living and wellness.
    NIDRR will increase its KT activities by examining the needs of the 
end users of information. The new approach will look at the user needs 
in terms of: characterizing users of NIDRR's research; identifying 
users' goals or purposes; assuring alignment of the nature and quality 
of the information disseminated with the goals of the users; providing 
support and assistance to different users to help them find the

[[Page 43552]]

information that they need; and meeting the accessibility requirements 
of people with disabilities. This approach also will facilitate NIDRR's 
growth in the KT area by addressing questions on methods for KT 
including: a mechanism for the review and validation of project results 
as a stage in translation; assistance to projects in using existing 
clearinghouses; and a mechanism to track specific results to identify 
long-term accomplishments.
    NIDRR will focus on high quality peer review and discussion of one 
major product for each research and development area each year. This 
type of peer discussion and consensus by researchers will be 
facilitated through a special database and the results will be reviewed 
for accuracy and completeness.
    Thus, NIDRR's agenda in the area of KT is designed to:
     Increase the availability of relevant information to 
NIDRR's intermediate and intended beneficiaries by developing and 
implementing a systematic approach to vetting information.
     Increase understanding of how best to communicate new 
knowledge to beneficiaries.
     Increase the availability of technologies that enable 
independent mobility, control and manipulation of the home, community 
and workplace environments and access and use of information through 
technology transfer.

Appendix 1--Steering Committee Members

    Elena Andresen, a professor and chief of the epidemiology 
division in the Department of Health Services Research, Management 
and Policy at the University of Florida, has over 15 years of 
experience in the area of epidemiology. Her research interests 
include women's health and chronic disease epidemiology, disability, 
and the use of outcomes measures in clinical, epidemiologic and 
health services research. Andresen's grant review participation 
includes the Centers for Disease Control and Prevention (CDC), the 
National Institutes on Aging, and Department of Veterans Affairs 
(VA). She also has served on committees for the Institute of 
Medicine, the Agency for Healthcare Research and Quality (AHRQ), and 
the CDC. Andresen is a member of the American Public Health 
Association, the American College of Epidemiology, the Association 
of Teachers of Preventive Medicine, and the Society for 
Epidemiologic Research. Andresen has a doctoral degree in 
epidemiology from the University of Washington.
    Bobbie J. Atkins, a professor in the Master's Program in 
Rehabilitation Counseling at San Diego State University, has over 25 
years of experience in teaching, research, writing, and service in 
rehabilitation counseling. She has distinguished herself as a leader 
nationally and internationally with expertise in diversity, alcohol 
and drug prevention, AIDS education, and supervision. In 1999, the 
National Association for Multicultural Rehabilitation Concerns named 
its research award the Bobbie J. Atkins Rehabilitation Research 
Award. Atkins has received numerous awards including the Mary E. 
Switzer Fellow from the National Rehabilitation Association and has 
served on the President's Committee on Employment of Persons with 
Disabilities. She is the 2003 recipient of the National 
Rehabilitation Association (NRA) Presidents' Award for outstanding 
contributions to the field of rehabilitation. As the current project 
director of Project Success, a Rehabilitation Services 
Administration (RSA) funded capacity-building project, she is 
directly impacting people of color through training and technical 
assistance on grant writing and submission. Atkins' doctoral degree 
in rehabilitation counseling psychology is from the University of 
Wisconsin-Madison.
    Henry B. Betts, chairman of the Rehabilitation Institute of 
Chicago (RIC) Foundation, is a pioneer in the field of 
rehabilitation medicine. He has served the RIC as president, chief 
executive officer and medical director. He was chairman of the 
Department of Physical Medicine and Rehabilitation at Northwestern 
University's Feinberg School of Medicine until October 1994 and also 
the first Paul B. Magnuson Professor in that department. Betts has 
spent his life changing attitudes and improving conditions for 
people with disabilities. At RIC, he created what is now one of the 
nation's largest residency programs in physical medicine and 
rehabilitation. He has advocated for many issues including the 
Americans with Disabilities Act of 1990, improved accessibility in 
public buildings and walkways, and seat belt and drunk driving laws. 
He works vigorously on issues of employment of people with 
disabilities. Betts serves as a board member on many professional 
and community organizations. The Prince Charitable Trusts honored 
his efforts in 1990 by establishing the Henry B. Betts Award, 
conferred annually upon an individual whose work has benefited the 
disability community. Betts has a medical degree from the University 
of Virginia.
    Frank G. Bowe, the Dr. Mervin Livingston Schloss Distinguished 
Professor at Hofstra University, teaches courses in special 
education, technology and rehabilitation in the department of 
counseling, research and special education. His first job was 
working with the late Mary E. Switzer, America's foremost leader and 
trailblazer for innovative programs at the National, State and local 
levels for people with disabilities in vocational rehabilitation. As 
the founding chief executive officer of the American Coalition of 
Citizens with Disabilities (ACCD) in the late 1970s, Bowe was 
instrumental in the implementation of historic civil rights for 
people with disabilities, including sections 501-504 of the 
Rehabilitation Act, housing, transportation and special education. 
He has held several congressional and presidential appointments. For 
over 25 years, Bowe has advised the U.S. Senate, the U.S. House of 
Representatives and executive branch agencies on Federal disability 
policy. He has received numerous awards including the Distinguished 
Service Award of the President of the United States and the 
Americans with Disabilities Act Award for his role in the enactment 
of the legislation. Bowe has a doctoral degree in educational 
psychology from New York University.
    Judi Chamberlin, a psychiatric survivor, author and activist is 
a co-founder of the Ruby Rogers Advocacy and Drop-In Center, a self-
help center run by and for people who have received psychiatric 
services. She is the author of On Our Own: Patient Controlled 
Alternatives to the Mental Health System. Chamberlin is the Director 
of Education and Training at the National Empowerment Center and is 
a senior consultant at the Boston University Center for Psychiatric 
Rehabilitation where she directed a research project on user-run 
self-help services. She has spoken at conferences and meetings 
throughout the U.S. and abroad and has appeared on many radio and 
television programs discussing the topics of self-help and patients' 
rights. Chamberlin has received numerous awards for efforts 
including the Distinguished Service Award of the President of the 
United States by the President's Committee on Employment of People 
with Disabilities, the David J. Vail National Advocacy Award, and 
the 1995 Pike Prize, which honors those who have given outstanding 
service to people with disabilities.
    Dudley S. Childress is a professor of biomedical engineering in 
the Department of Physical Medicine and Rehabilitation at 
Northwestern University and a research health scientist in the VA's 
Chicago Health Care System-Lakeside Division where he directs the 
Prosthetics Research Laboratory. At Northwestern, he directs NIDRR's 
RERC in Prosthetics and Orthotics and is the executive director for 
the Prosthetics and Orthotics Education Program. His present 
research and development activities are concentrated in the areas of 
biomechanics, human walking, artificial limbs, ambulation aids and 
rehabilitation engineering. He engages in the development of 
engineering systems that assist people with ambulation problems and 
that provide control for artificial hand/arm replacements. 
Childress, a recipient of numerous honors and awards including the 
Missouri Honor Award for Distinguished Service in Engineering, is 
also a member of the Institute of Medicine of the National Academy 
of Sciences. Childress has a doctoral degree in electrical 
engineering from Northwestern University.
    Patrick E. Crago is a professor and chairman of the Department 
of Biomedical Engineering at Case Western Reserve University. With 
over 25 years of engineering experience, Crago's research interests 
include restoration of movement by functional neuromuscular 
stimulation and in normal and pathological movement control and 
regulation. His current research projects include biomechanical, 
neural and neuroprosthetic control of the wrist, forearm and elbow, 
and the clinical implementation and evaluation of neuroprostheses 
for hand grasp and proximal arm control. Crago has

[[Page 43553]]

served on many committee and advisory boards for numerous 
organizations and Federal agencies. Crago has a doctoral degree in 
biomedical engineering from Case Western Reserve University.
    Eric Dishman, a senior social scientist and principal engineer 
at Intel Corporation, is director of the Intel Proactive Health Lab. 
His team's current fieldwork and technology trials focus on helping 
mild cognitive impairment patients to maintain independence, 
function, and quality of life from their own homes through the use 
of wireless sensor networks and other computing technologies. In 
partnership with the American Association of Homes and Services for 
the Aging, Dishman serves as the chair of the Center for Aging 
Services Technologies, and he also recently co-founded the Everyday 
Technologies for Alzheimer's Care consortium with the Alzheimer's 
Association. Dishman is a nationally known speaker on the topics of 
aging and home health care technologies, and he serves as an advisor 
to numerous companies, universities, and Congressional members on 
assistive technologies, telemedicine, and home healthcare. Dishman 
has a master's degree in Speech Communication from Southern Illinois 
University at Carbondale.
    Pamela W. Duncan, a physical therapist and epidemiologist, is 
recognized nationally and internationally as a leader in 
rehabilitation outcomes research and practice. Duncan recently 
joined the faculty at the University of Florida and is the director 
of the University's Brooks Center for Rehabilitation Studies and the 
Rehabilitation Outcomes Research Center of Excellence at the North 
Florida/South Georgia Veterans Health System. Her research provides 
leadership in evaluating the effectiveness of medical 
rehabilitation, the development of health status measures for the 
chronically disabled, and the design of clinical trials to evaluate 
exercise interventions for frail elders and stroke survivors. Duncan 
has served as co-chair of the Agency for Health Care Policy and 
Research (AHCPR) Post-Acute Stroke Guidelines and has served on the 
advisory committees for Health Care Financing Administration (HCFA), 
Canadian Stroke Network and the National Institute of Neurological 
Disorders and Strokes (NINDS). As a member of the American Heart 
Association (AHA) public policy committee, she advocates for 
national funding for rehabilitation services and research and 
development of quality indicators for stroke care. She is on the 
editorial board of numerous journals and her work has been published 
in a variety of journals including Stroke, the Journal of the 
American Geriatric Society, the Journal of Gerontology Medical 
Science, and the Archives of Physical Medicine and Rehabilitation. 
Duncan has a doctoral degree in epidemiology from the University of 
North Carolina-Chapel Hill.
    Glenn T. Fujiura is an Associate Professor of Human Development 
and Director of Graduate Studies in the College of Applied Health 
Sciences at the University of Illinois at Chicago (UIC). Dr. 
Fujiura's research has focused on the fiscal structure and 
demography of the disability service system, on family policy, 
evaluation of long-term care services, poverty and disability, 
ethnic and racial issues in disability, and on the statistical 
surveillance of disability. In addition, he has a long-standing 
interest in research methodology, statistical analysis, and 
philosophy of science. He teaches research methods, advanced 
research concepts, and statistics for the graduate program in 
Disability Studies at the UIC. His current major projects include a 
NIDRR-supported epidemiological study of disablement in the third 
world using data from the World Bank and State level program 
evaluations. He has worked extensively in both the creation of large 
national data sets in mental retardation and developmental 
disabilities, and in the secondary analysis of national statistical 
surveillance systems. Dr. Fujiura was a recipient of the National 
Rehabilitation Association's Switzer Scholar award, served as a 
member of the President's Committee on Mental Retardation, and was 
Chair of the U.S. Administration on Developmental Disabilities 
Commissioner's Multicultural Advisory Committee. Fujiura has a 
doctoral degree in special education from the University of Illinois 
at Urbana-Champaign.
    Allen C. Harris, the director of the Iowa Department for the 
Blind, has served as a chief in the Bureau of Field Operation and 
Implementation for the New York State Commission for the Blind and 
Visually Handicapped. Harris has been the recipient of numerous 
awards including the Lifetime Achievement Award from the National 
Federation of the Blind of Michigan and the Distinguished Blind 
Educator of the Year from the National Association of Blind 
Educators. He serves on several boards including the Lions Club of 
Iowa, the National Organization of Rehabilitation Partners and the 
National Council of State Agencies for the Blind. Harris has a 
master's degree in education from Wayne State University.
    David Mank, the director of the Indiana Institute on Disability 
and Community, is a professor in the School of Education at Indiana 
University. A writer and researcher, Mank has an extensive 
background in the education and employment of persons with 
disabilities. He has extensive responsibility for Federal and State 
grant management of more than 20 projects as principal investigator, 
director or co-director. His interests include transition from 
school to adult life and community living. He is also past president 
of the Association of University Centers on Disabilities and a 
member of the Governing Council of the International Association for 
the Scientific Study of Intellectual Disabilities. In 2001, he 
received the Franklin Smith Award for National Distinguished Service 
by The Arc of the United States. Mank has a doctoral degree in 
special education and rehabilitation from University of Oregon.
    Kathleen Martinez, deputy director of the World Institute on 
Disability (WID), is an internationally recognized disability rights 
leader with particular focus on employment, minority and gender 
issues. At WID, Martinez is responsible for the development and 
supervision of all of WID's international, technical assistance, 
employment and training projects. She currently supervises Proyecto 
Vision, a National Technical Assistance Center for Latinos with 
Disabilities and the five-year International Disability Exchanges 
and Studies for the New Millennium Project. Through these projects, 
Martinez oversees the production of the bilingual international 
webzine, Disability World, and a Web site designed to connect U.S. 
based disabled Latinos to the world of employment. In July 2002, she 
was appointed by President George W. Bush as a member of the 
National Council on Disability. On the Council, she chairs the 
International Watch Committee and is a leader in the Council's 
employment and diversity initiatives. Martinez has a bachelor's 
degree in speech and communications studies from San Francisco State 
University.
    John L. Melvin, the Jessie B. Michie Professor and chairman of 
the Department of Rehabilitation Medicine at the Jefferson College 
of Medicine of the Thomas Jefferson University, served as medical 
director of the Curative Rehabilitation Center of Milwaukee, vice 
president for medical affairs of Moss Rehab and chairman of Physical 
Medicine and Rehabilitation at the Albert Einstein Medical Center of 
Philadelphia. Melvin has been the president or chairman of 11 major 
national and international organizations and has served on 41 
national and international expert advisory committees including the 
Institute of Medicine and the National Research Council of the 
National Academy of Sciences. He is currently chair of the advisory 
board for the Boston University RRTC for Measuring Rehabilitation 
Outcomes sponsored by NIDRR. Melvin has a medical degree from Ohio 
State University.
    Erica Nash, is president and executive director of Help-Your-
Self, an organization that is dedicated to helping any person with 
disabilities improve and maintain his or her lifestyle by providing 
tools and services to enable community integration, independence, 
and increased self-sufficiency and productivity, in accordance with 
individual goals. Nash is a member of the Mayor's Committee on 
Persons with Disabilities and on other committees including the D.C. 
Medical Assistance Administration and the Office of Disabilities and 
Aging. Nash has a bachelor's degree in international communications 
and public relations for arts management from American University, 
and will complete her master's degree in technology and management 
for non-profit and arts organizations from American University in 
June of 2005.
    Margaret G. Stineman is an associate professor of rehabilitation 
medicine in the Department of Rehabilitation Medicine, a senior 
fellow of the Institute on Aging, a senior fellow with the Leonard 
Davis Institute of Health Economics, and an associate scholar in the 
Clinical Epidemiology Unit of the Center for Clinical Epidemiology 
and Biostatistics at the University of Pennsylvania. She was the 
principal architect of the patient classification approach used by 
the Centers for Medicare and Medicaid Services in its prospective 
payment system for inpatient rehabilitation facilities. She has 
consulted

[[Page 43554]]

with the World Health Organization in Geneva, Switzerland, on 
community-based rehabilitation. Her current work focuses on 
addressing social and environmental barriers to the participation of 
people with disabilities in activities that are meaningful to them. 
Stineman has a medical degree from Hahnemann University.
    Carl Suter, originally from the state of Illinois, is the 
executive director of the Council of State Administrators of 
Vocational Rehabilitation (CSAVR). Prior to joining the CSAVR, Mr. 
Suter was the director of the Illinois Office of Rehabilitation 
Services for five years. He oversaw a budget of nearly $500 million 
dollars that included programs such as vocational rehabilitation, a 
$300 million dollar in-home care program for persons with 
disabilities, three schools for children with disabilities, and 
disability adjudicative services for determining eligibility for 
benefits for the Social Security Disability Insurance Program and 
Supplemental Security Income in Illinois. During his tenure as State 
director, he led sweeping reforms of the Illinois Vocational 
Rehabilitation Services Program to provide world-class customer 
service to the nearly 70,000 individuals with disabilities served 
through its programs. Suter has also served as the executive 
director of the Illinois Council on Developmental Disabilities and 
as the associate director of the Illinois Association of 
Rehabilitation Facilities. Suter has a bachelor's degree in speech 
communication from the University of Illinois at Urbana-Champaign.

BILLING CODE 4000-01-P

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[GRAPHIC] [TIFF OMITTED] TN27JY05.000

[FR Doc. 05-14741 Filed 7-26-05; 8:45 am]
BILLING CODE 4000-01-C