[Federal Register: August 31, 2007 (Volume 72, Number 169)]
[Notices]
[Page 50515-50541]
From the Federal Register Online via GPO Access [wais.access.gpo.gov]
[DOCID:fr31au07-177]
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Part IV
Department of Education
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Funding Priorities for the Disability and Rehabilitation Research
Projects and Centers Program; Notice
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DEPARTMENT OF EDUCATION
National Institute on Disability and Rehabilitation Research--
Disability and Rehabilitation Research Projects and Centers Program--
Disability Rehabilitation Research Projects (DRRPs), Rehabilitation
Research and Training Centers (RRTCs), and Rehabilitation Engineering
Research Centers (RERCs)
AGENCY: Office of Special Education and Rehabilitative Services,
Department of Education.
ACTION: Notice of proposed priorities for DRRPs, RRTCs, and RERCs.
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SUMMARY: The Assistant Secretary for Special Education and
Rehabilitative Services proposes certain funding priorities for the
Disability and Rehabilitation Research Projects and Centers Program
administered by the National Institute on Disability and Rehabilitation
Research (NIDRR). Specifically, this notice proposes 10 priorities for
DRRPs, 11 priorities for RRTCs, and 6 priorities for RERCs. The
Assistant Secretary may use these priorities for competitions in fiscal
year (FY) 2008 and later years. We take this action to focus research
attention on areas of national need. We intend these priorities to
improve rehabilitation services and outcomes for individuals with
disabilities.
DATES: We must receive your comments on or before October 1, 2007.
ADDRESSES: Address all comments about these proposed priorities to
Donna Nangle, U.S. Department of Education, 400 Maryland Avenue, SW.,
Room 6029, Potomac Center Plaza, Washington, DC 20204-2700. If you
prefer to send your comments through the Internet, use the following
address: donna.nangle@ed.gov.
You must include the term ``Proposed Priorities for DRRPs, RRTCs,
and RERCs'' and the priority title 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.
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: This notice of proposed priorities is in
concert with President George W. Bush's New Freedom Initiative (NFI)
and NIDRR's Final Long-Range Plan for FY 2005-2009 (Plan). The NFI can
be accessed on the Internet at the following site:
http://www.whitehouse.gov/infocus/newfreedom.
The Plan, which was published in the Federal Register on February
15, 2006 (71 FR 8165), can be accessed on the Internet at the following
site: http://www.ed.gov/about/offices/list/osers/nidrr/policy.html.
Through the implementation of the NFI and the Plan, NIDRR seeks to:
(1) Improve the quality and utility of disability and rehabilitation
research; (2) foster an exchange of expertise, information, and
training to facilitate the advancement of knowledge and understanding
of the unique needs of traditionally underserved populations; (3)
determine best strategies and programs to improve rehabilitation
outcomes for underserved populations; (4) identify research gaps; (5)
identify mechanisms of integrating research and practice; and (6)
disseminate findings.
One of the specific goals established in the Plan is for NIDRR to
publish all of its proposed priorities, and following public comment,
final priorities, annually, on a combined basis. Under this approach,
NIDRR's constituents can submit comments at one time rather than at
different times throughout the year, and NIDRR can move toward a fixed
schedule for competitions and more efficient grant-making operations.
This notice proposes priorities that NIDRR intends to use for DRRP,
RRTC, and RERC competitions in FY 2008 and possibly later years.
However, nothing precludes NIDRR from publishing additional priorities,
if needed. Furthermore, NIDRR is under no obligation to make an award
for each of these priorities. The decision to make an award will be
based on the quality of applications received and available funding.
NIDRR also intends to publish at least one additional separate
notice of proposed priority for an additional DRRP that would focus on
traditionally underserved populations, as required under section 21 of
the Rehabilitation Act of 1973, as amended. Moreover, for FY 2008
competitions using priorities that already have been established and
for which publication of a notice of proposed priority is unnecessary
(e.g., competitions for Field-Initiated Projects, Advanced
Rehabilitation Research Training Projects, Fellowships, and Small
Business Innovation Research Projects), NIDRR has published or will
publish notices inviting applications. More information on these other
projects and programs that NIDRR intends to fund in FY 2008 can be
found on the Internet at the following site:
http://www.ed.gov/fund/grant/apply/nidrr/priority-matrix.html.
Invitation To Comment
We invite you to submit comments regarding these proposed
priorities. To ensure that your comments have maximum effect in
developing the notice of final priorities, we urge you to identify
clearly the specific proposed priority or topic that each comment
addresses.
We invite you to assist us in complying with the specific
requirements of Executive Order 12866 and its overall requirement of
reducing regulatory burden that might result from these proposed
priorities. Please let us know of any further opportunities we should
take to reduce potential costs or increase potential benefits while
preserving the effective and efficient administration of the program.
During and after the comment period, you may inspect all public
comments about these proposed priorities in room 6030, 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 Rulemaking
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 these proposed priorities. If you want to
schedule an appointment for this type of aid, please contact the person
listed under FOR FURTHER INFORMATION CONTACT.
We will announce the final priorities in one or more notices in the
Federal Register. We will determine the final priorities after
considering responses to this notice and other information available to
the Department. This notice does not preclude us from proposing or
using additional priorities, subject to meeting applicable rulemaking
requirements.
Note: This notice does not solicit applications. In any year in
which we choose to use these proposed priorities, we invite
applications through a notice in the Federal Register. When inviting
applications we designate the priorities as absolute, competitive
preference, or invitational.
The effect of each type of priority follows:
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Absolute priority: Under an absolute priority, we consider only
applications that meet the priority (34 CFR 75.105(c)(3)).
Competitive preference priority: Under a competitive preference
priority, we give competitive preference to an application by either
(1) Awarding additional points, depending on how well or the extent to
which the application meets the competitive preference priority (34 CFR
75.105(c)(2)(i)); or (2) selecting an application that meets the
competitive preference priority over an application of comparable merit
that does not meet the priority (34 CFR 75.105(c)(2)(ii)).
Invitational priority: Under an invitational priority, we are
particularly interested in applications that meet the invitational
priority. However, we do not give an application that meets the
invitational priority a competitive or absolute preference over other
applications (34 CFR 75.105(c)(1)).
Priorities
In this notice, we are proposing 10 priorities for DRRPs, 11
priorities for RRTCs, and 6 priorities for RERCs.
For DRRPs, the proposed priorities are:
Priority 1--Health Care Coordination for Individuals with
Physical Disabilities.
Priority 2--Assistive Technology (AT) Reuse.
Priority 3--Health and Health Care Disparities Among
Individuals with Disabilities.
Priority 4--Traumatic Brain Injury Model Systems (TBIMS)
Centers Collaborative Research Projects.
Priority 5--Classification and Measurement of Medical
Rehabilitation Interventions.
Priority 6--Vocational Rehabilitation Service Models for
Individuals with Autism Spectrum Disorders.
Priority 7--Center on Knowledge Translation for Assistive
Technology Transfer.
Priority 8--Asset Accumulation and Economic Self-
Sufficiency for Individuals with Disabilities.
Priority 9--Technology Transfer in Resource-Limited
Environments.
Priority 10--Research and Knowledge Translation Center for
Individuals with Disabilities and Their Families.
For RRTCs, the proposed priorities are:
Priority 11--General Rehabilitation Research and Training
Center (RRTC) Requirements.
Priority 12--Enhancing the Health and Wellness of
Individuals with Neuromuscular Diseases.
Priority 13--Enhancing the Health and Wellness of Persons
with Arthritis.
Priority 14--Stroke Rehabilitation.
Priority 15--Personal Assistance Services (PAS) in the
21st Century.
Priority 16--Participation and Community Living for
Individuals with Psychiatric Disabilities.
Priority 17--Multiple Sclerosis: Interventions to Maximize
Health, Well-Being, and Participation.
Priority 18--Aging with Physical Disability: Reducing
Secondary Conditions and Enhancing Health and Participation.
Priority 19--Disability Statistics and Demographics.
Priority 20--Health and Function Across the Lifespan of
Individuals with Intellectual and Developmental Disabilities.
Priority 21--Participation and Community Living for
Individuals with Intellectual and Developmental Disabilities.
For RERCs, the proposed priorities are:
Priority 22--RERC for Hearing Enhancement.
Priority 23--RERC for Accessible Public Transportation.
Priority 24--RERC for Prosthetics and Orthotics.
Priority 25--RERC for Communication Enhancement.
Priority 26--RERC for Universal Interface and Information
Technology Access.
Priority 27--RERC for Wheeled Mobility.
Disability and Rehabilitation Research Projects (DRRP) Program
The purpose of the DRRP program is to plan and conduct research,
demonstration projects, training, and related activities to develop
methods, procedures, and rehabilitation technologies that maximize the
full inclusion and integration into society, employment, independent
living, family support, and economic and social self-sufficiency of
individuals with disabilities, especially individuals with the most
severe disabilities, and to improve the effectiveness of services
authorized under the Rehabilitation Act of 1973, as amended. DRRPs
carry out one or more of the following types of activities, as
specified and defined in 34 CFR 350.13 through 350.19: research,
development, demonstration, training, dissemination, utilization, and
technical assistance.
An applicant for assistance under this program must demonstrate in
its application how it will address, in whole or in part, the needs of
individuals with disabilities from minority backgrounds (34 CFR
350.40(a)). The approaches an applicant may take to meet this
requirement are found in 34 CFR 350.40(b). In addition, NIDRR intends
to require all DRRP applicants to meet the requirements of the General
Disability and Rehabilitation Research Projects (DRRP) Requirements
priority that it published in a notice of final priorities in the
Federal Register on April 28, 2006 (71 FR 25472).
Additional information on the DRRP program can be found at:
http://www.ed.gov/rschstat/research/pubs/res-program.html#DRRP.
Proposed Priorities
Priority 1--Health Care Coordination for Individuals With Physical
Disabilities
Background
Individuals with disabilities use a disproportional share of health
care services in the United States (DeJong et al., 2002). The Centers
for Medicare and Medicaid Services (CMS) programs recognize this trend
and try to control its economic consequences by enrolling individuals
with disabilities in managed care programs in increasing numbers
(Palsbo & Mastal, 2006). A small but growing number of Medicaid managed
care plans are designed specifically for individuals with disabilities.
These plans feature intensive care coordination services that integrate
the complex health and long-term care needs of individuals with
disabilities (Palsbo & Mastal, 2006; Master, 2003).
Pursuant to the Medicare Prescription Drug, Improvement, and
Modernization Act of 2003, CMS also contracts with a growing number of
Medicare health plans to provide health care coordination and services
for Medicare beneficiaries who have severe or disabling chronic
conditions (Peters, 2005).
Health care coordination is an increasingly important component of
high-quality health care for individuals with disabilities (Cheng et
al., 2004; Lawthers et al., 2003; Kroll, 2003). On average, individuals
with disabilities have more complex and multi-faceted health care needs
than individuals without disabilities. For example, individuals with
disabilities often require the involvement of multiple medical and
ancillary providers, including long-term care providers (DeJong et al.,
2002). Individuals with disabilities also often find it difficult to
navigate the complex, fragmented health and long-term care service
systems that are critical to maintaining their health, functional
abilities, and independence in the community. Recognizing the
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importance of integration and coordination of health and long-term care
services, NIDRR states that ``individuals 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'' (NIDRR
Long-Range Plan, 2005-2009). Toward this goal, NIDRR seeks to sponsor
rigorous research to assess the outcomes associated with managed health
care coordination programs for individuals with disabilities.
A number of small pilot studies suggest an association between
enrollment in managed health care coordination programs for individuals
with disabilities and positive outcomes such as increased satisfaction
with health care services, greater access to a wide variety of health
and long-term care services, and decreased utilization of costly
emergency and hospital-based services (Surpin, 2007; Palsbo, Mastal, &
O'Donnell, 2006; Master, 2003). More systematic, peer-reviewed research
is required to determine the extent to which these health care
coordination programs for individuals with disabilities relate to
improvements in both the health and health care experiences of their
clients and to cost savings for public financing mechanisms.
References
Cheng, E., Siderow, A., Swarztrauber, K., Eisa, M., Lee, M., &
Vickrey, B. (2004). Development of Quality of Care Indicators for
Parkinson's Disease. Movement Disorders. 19(2): 136-150.
DeJong, G., Palsbo, S., Beatty, P., Jones, G., Kroll, T., & Neri, M.
(2002). The Organization and Financing of Health Services for People
With Disabilities. Milbank Quarterly. 80(2): 261-301.
Kroll, T. (2003). Towards Improving Health Care Delivery for People
With Physical Disabilities: Findings From Focus Groups with Health
Care Consumers in Minnesota. Managed Care Quarterly. 11(4): 8-14.
Lawthers, A., Pransky, G., Peterson, L., & Himmelstein, J. (2003).
Rethinking Quality in the Context of Persons With Disability.
International Journal for Quality in Health Care. 15(4): 279-281.
Master, R., Simon, L., & Goldfield, N. (2003). Commonwealth Care
Alliance. A New Approach to Coordinated Care for the Chronically Ill
and Frail Elderly That Organizationally Integrates Consumer
Involvement. Journal of Ambulatory Care Management. 26(4): 355-361.
National Institute on Disability and Rehabilitation Research. Notice
of Final Long Range Plan for Fiscal Years 2005-2009. Pages: 8166-
8200. http://www.ed.gov/about/offices/list/osers/nidrr/policy.html.
Palsbo, S. & Mastal, M. (2006). Disability Care Coordination Care
Organizations: The Experience of Medicaid Managed Care Programs for
People With Disabilities. Center for Health Care Strategies.
Resource Paper. http://www.chcs.org/usr--doc/DCCOs.pdf.
Palsbo, S., Mastal, M., & O'Donnell, L. (2006). Disability Care
Coordination Organizations: Improving Health and Function in People
With Disabilities. Lippincotts Case Management. 11(5): 255-264.
Peters, C.P. (2005). Medicare Advantage SNPs: A New Opportunity for
Integrated Care? Washington DC: National Health Policy Forum. Issue
Brief 808.
Surpin, R. (2007). Independence Care System: A Disability Care
Coordination Organization in New York City. Journal of Ambulatory
Care Management. 30(1): 52-63.
Proposed Priority
The Assistant Secretary for Special Education and Rehabilitative
Services proposes a priority for a Disability Rehabilitation Research
Project (DRRP) on Health Care Coordination for Individuals with
Disabilities. The purpose of this priority is to conduct research on
the outcomes of Medicare or Medicaid managed health care coordination
programs for individuals with disabilities. Under this priority, the
DRRP must be designed to contribute to the following outcomes:
(a) New knowledge about the extent to which enrollment in health
care coordination programs enhances access to health care for
individuals with disabilities. The DRRP must contribute to this outcome
by conducting research on, and evaluating, one or more existing
Medicaid- or Medicare-funded health care coordination programs for
individuals with disabilities.
(b) New knowledge about the health outcomes associated with
participation in health care coordination programs for individuals with
disabilities. The DRRP must contribute to this outcome by conducting
research on, and evaluating, one or more existing Medicaid- or
Medicare-funded health care coordination programs for individuals with
disabilities.
(c) New knowledge about potential Medicaid or Medicare cost savings
that are associated with health care coordination efforts for
individuals with disabilities. The DRRP must contribute to this outcome
by conducting research on, and evaluating, one or more existing
Medicaid- or Medicare-funded health care coordination programs for
individuals with disabilities.
In addition, the DRRP must work with the NIDRR Project Officer to
coordinate its research efforts with the Centers for Medicare and
Medicaid Services--Office of Research, Development, and Information.
Priority 2--Assistive Technology (AT) Reuse
Background
Reuse programs are emerging as one potential solution to providing
more assistive technology (AT) to individuals with disabilities at
lower costs (Pass It On Center). For example, the Rehabilitation
Services Administration (RSA) of the U.S. Department of Education has
funded model demonstration projects to establish or expand statewide AT
device reutilization programs. Device reuse programs, such as exchange
programs and reassignment programs, facilitate the transfer of
previously-used AT from one consumer to another. Each of these programs
has distinct features and benefits. An exchange program assists in
connecting users to transfer AT directly among themselves. Reassignment
programs, on the other hand, accept used AT, sanitize it, identify
appropriate users, and redistribute the AT following sanitization and
matching.
One advantage of reuse programs, in general, is that they provide
consumers with access to AT devices at reasonably lower costs. AT
equipment provided through these programs also leads to an increased
capacity for community living and participation by individuals with
disabilities. AT reuse programs meet varied needs and circumstances
surrounding consumer access to AT, such as access on a temporary basis,
or access for trial purposes to assess the benefit and effectiveness of
a device for a consumer's use.
A number of barriers and obstacles limit the utility of AT reuse
programs. A recent study found that individuals with disabilities or
other family members, not third parties, most frequently pay for
commonly used AT devices, special adaptations, and environmental
accommodations (Carlson & Ehrlich, 2006). Consumer access to AT and
compensation for AT is often limited by conflicting eligibility
requirements of current policies regulating the provision of AT. In
addition, third-party payment restrictions frequently minimize the
extent to which Medicare, Medicaid, private insurance, and vocational
rehabilitation can assist with AT costs. Increased awareness of the
potential costs and benefits associated with AT reuse programs can
positively impact their use, and in addition, has implications for
third-party payment coverage for reused AT. Furthermore,
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AT reuse programs do not have the benefit of a national coordinated
system to assist in sustaining or expanding programs. Nor do AT reuse
programs have the benefit of research that has identified methods,
models, and measures for enhancing program effectiveness and improving
consumer outcomes.
At the present time, there is little data available to guide the
management, enhancement, or expansion of these programs. Few research
studies have been conducted to inform the AT reuse field of validated
methods, models, and measures that lead to improved program and
consumer outcomes. This field needs new knowledge regarding factors
that influence success of AT reutilization programs, e.g., program
design, staffing, training, funding sources, and use of collaborative
partnerships in operating AT reuse programs. Specifically, more
research is needed to examine how these and other factors affect
program outcomes and to identify the most effective measures available
to assess program quality as well as the costs and benefits of the
program. Numerous reuse programs in the United States could benefit
from research in this area.
References
Carlson, D. & Ehrlich, N. (2006). Sources of payment for assistive
technology: Findings from a national survey of persons with
disabilities. Assistive Technology, 18(1), 77-86.
Pass It On Center. http://www.passitoncenter.org.
Proposed Priority
The Assistant Secretary for Special Education and Rehabilitative
Services proposes a priority for a Disability Rehabilitation Research
Project (DRRP) on Assistive Technology (AT) Reuse for individuals with
disabilities. The purpose of this priority is to support research that
will identify methods, systems, policies, and collaborative strategies
to improve reutilization and recycling of AT. Under this priority, the
DRRP must be designed to contribute to the following outcomes:
(a) Enhanced understanding of how third-party payments for
purchases of AT affect AT reuse programs. The DRRP must contribute to
this outcome by conducting an analysis of current policy and consumer
eligibility requirements and by generating relevant recommendations
related to AT reuse.
(b) New knowledge that positively affects the establishment,
expansion, and maintenance of AT reuse programs. The DRRP must
contribute to this outcome by conducting research studies validating
effective methods and models for conducting AT reutilization activities
(e.g., program design; alternative recycling methods; partnerships;
program marketing strategies; and recruitment, retention, and training
of AT reuse staff).
(c) Improved methods and strategies for assessing the costs and
benefits, including cost-savings, of AT reuse programs. The DRRP must
contribute to this outcome by identifying, developing, and testing
appropriate models to be used at the program level that can help inform
third-party payers of the costs and benefits associated with AT reuse
programs.
(d) Improved understanding of AT reuse outcomes for individuals
with disabilities. The DRRP must contribute to this outcome by
conducting studies that assess and inform the AT field about the impact
of acquiring AT through reuse programs.
(e) Improved collaboration and use of research findings through
effective coordination within the network of relevant NIDRR RRTCs,
Rehabilitation Engineering Research Centers, DRRPs, and federally
funded programs, such as the Rehabilitation Services Administration
(RSA) AT State grants, the National AT Device Reutilization
Coordination and Technical Assistance Center, and grantees under RSA's
Model Demonstrations for AT Device Reutilization program.
Priority 3--Health and Health Care Disparities Among Individuals With
Disabilities
Background
In 2005, the U.S. Surgeon General released a ``Call to Action to
Improve the Health and Wellness of Persons With Disabilities'' that
delineated a series of strategies to optimize the health and wellness
of individuals with disabilities, (U.S. Department of Health and Human
Services (HHS), 2005). The Surgeon General proposed these strategies in
light of the growing body of research literature indicating that
individuals with disabilities are, on average, less likely than those
without disabilities to report positive health (Krahn, Hammond, &
Turner, 2006; Hough, 1999) and less likely to receive recommended
health care services (Kroll et al., 2006; McCarthy et al., 2006; Jones
& Beatty, 2003).
While the body of research that examines health disparities between
individuals with and without disabilities is expanding, few studies
have examined the health and health care disparities within the diverse
population of individuals with disabilities in the United States.
Health disparities recently have been defined as ``observed clinically
and statistically significant differences in health outcomes or health
care use between socially distinct vulnerable and less vulnerable
populations'' (Kilbourne et al., 2006). The broad population of 52
million individuals with disabilities (HHS, 2005) is heterogeneous in
terms of a number of factors that may be related to increased
vulnerability for poor health care access and poor health. These
factors include, but are not limited to, disabling condition category
(i.e., mental illness, sensory, physical, cognitive, or combinations
thereof), disability severity, age, gender, race, ethnicity,
socioeconomic status, education level, urban/rural status, health
insurance payer type (Medicare, Medicaid, private insurance), provider
type, and other social, personal, and environmental characteristics.
NIDRR recognizes that ``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'' (NIDRR Long Range Plan, 2005). The Health and Function
chapter of the NIDRR Long Range Plan promotes research on the health
and health care experiences of the wide diversity of individuals with
disabilities (NIDRR Long Range Plan, 2005).
Given the wide diversity of individuals with disabilities and the
limited information available about existing health care access and
outcome disparities that exist within this population, research is
needed to improve our understanding about the factors that contribute
to health disparities. New knowledge about these factors can be used to
create targeted policies, programs, and interventions that promote
health and wellness among the individuals with disabilities who are
most vulnerable and most likely to demonstrate health outcomes
traditionally attributed to disparate treatment or health care access
difficulties.
References
Hough, J. (1999). Disability and Health: A National Public Health
Agenda. In Simeonsson, R.J., McDevitt, L.N. (Eds.). Issues in
Disability and Health. The Role of Secondary Conditions and Quality
of Life. Chapel Hill NC: University of North Carolina Press.
Jones, G. & Beatty, P. (2003). Disparities in Preventive Service Use
Amongst Working-Age Adults With Mobility Limitations. In Altman, B.,
Barnartt, S., Hendershot, G., & Larson, S. (Eds.)
[[Page 50520]]
Research in Social Science and Disability 1 Volume 3: Using Survey
Data To Study Disability: Results From the National Health Interview
Survey on Disability. Pages: 109-130. Oxford, UK: Elsevier.
Kilbourne, A., Switzer, G., Hyman, K., Crowley-Matoka, M., & Fine,
M. (2006). Advancing Health Disparities Research Within the Health
Care System: A Conceptual Framework. American Journal of Public
Health. 96(12): 2113-2121.
Krahn, G., Hammond, L., & Turner, A. (2006). A Cascade of
Disparities: Health and Health Care Access for People With
Intellectual Disabilities. Mental Retardation and Developmental
Disabilities Research Reviews. 12(1): 70-82.
Kroll, T., Jones, G., Kehn, M., & Neri, M. (2006). Barriers and
Strategies Affecting the Utilization of Primary Preventive Services
for People With Physical Disabilities: A Qualitative Inquiry. Health
and Social Care in the Community. 14(4): 284-293.
McCarthy, E., Ngo, L., Roetzheim, R., Chirikos, T., Li, D., Drews,
R., & Iezzoni, L. (2006). Disparities in Breast Cancer Treatment and
Survival for Women With Disabilities. Annals of Internal Medicine.
145(9): 637-645.
National Institute on Disability and Rehabilitation Research. Notice
of Final Long Range Plan for Fiscal Years 2005-2009. Pages: 8166-
8200. http://www.ed.gov/about/offices/list/osers/nidrr/policy.html.
U.S. Department of Health and Human Services (2005). The Surgeon
General's Call to Action To Improve the Health and Wellness of Persons
With Disabilities. U.S. Department of Health and Human Services, Office
of the Surgeon General.
Proposed Priority
The Assistant Secretary for Special Education and Rehabilitative
Services proposes a priority for a Disability Rehabilitation Research
Project (DRRP) on Health and Health Care Disparities Among Individuals
With Disabilities. The purpose of this priority is to build a knowledge
base about health care access and health outcomes among the diverse
population of individuals with disabilities. Under this priority, the
DRRP must be designed to contribute to the following outcomes:
(a) A foundation of available knowledge about health disparities
among subpopulations of individuals with disabilities. The DRRP must
contribute to this outcome by conducting a review and synthesis of
existing research on health and health care access among individuals
with disabilities or subgroups of individuals with disabilities. The
DRRP must then use this review and synthesis to inform the subsequent
research and evaluation efforts of the DRRP.
(b) New knowledge about system-level factors that are associated
with the health and health care access of individuals with
disabilities. The DRRP must contribute to this outcome by conducting
research on the extent to which the health and health care access of
individuals with disabilities are related to system-level factors that
include, but are not limited to, rural or urban status, as well as
characteristics of their health care insurance or health care
providers.
(c) New knowledge about the individual-level characteristics of
individuals with disabilities that are associated with their health and
access to health care. The DRRP must contribute to this outcome by
conducting research on the extent to which the health and health care
access of individuals with disabilities are related to their disabling
condition categories (mental illness, sensory, physical, cognitive, or
combinations thereof), disability severity, age, gender, race,
ethnicity, socioeconomic status, education level, or other individual-
level characteristics.
(d) Improved policies, programs, or interventions that promote the
health and health care access of the subpopulations of individuals with
disabilities who are least likely to receive recommended health care
services. The DRRP must contribute to this outcome by applying
knowledge derived from research conducted under paragraphs (a), (b),
and (c) of this priority.
In addition, the DRRP must collaborate with the Rehabilitation
Research and Training Center on Health and Wellness, and other projects
as identified through consultation with the NIDRR project officer.
Priority 4--Traumatic Brain Injury Model Systems (TBIMS) Centers
Collaborative Research Projects
Background
The Centers for Disease Control and Prevention (CDC) report that at
least 1.4 million individuals sustain a traumatic brain injury (TBI) in
the United States each year (Langlois, Rutland-Brown, & Thomas, 2004).
Of these, approximately 50,000 die, 235,000 are hospitalized, and 1.1
million are treated and released from emergency departments. These
estimates do not include those individuals who sustained a TBI and did
not seek medical care, or who were seen only in private doctors'
offices. The three leading causes of TBI are motor vehicle/traffic
collisions, falls, and assaults.
CDC reports that each year an estimated 80,000 to 90,000 Americans
sustain TBI resulting in permanent disability. At least 5.3 million
Americans have a long-term or lifelong need for help to perform
activities of daily living as a result of TBI (Thurman et al., 1999).
The nature and extent of disability resulting from TBI depend on
several factors, such as the severity and location of the injury, the
length of impaired consciousness, the age and general health of the
patient, and the intensity of rehabilitation services (Cifu et al.,
2003; Dikmen et al., 2003; Sarajuuri et al., 2005). Common clinical
sequelae of TBI include problems with cognition, sensory processing,
communication, and behavioral or mental health. Some TBI survivors also
can develop long-term medical complications, such as Parkinson's
disease and other motor problems, Alzheimer's disease, and post-
traumatic dementia (National Institute of Neurological Disorders and
Stroke, 2002).
NIDRR created the TBI Model Systems (TBIMS) program in 1987 to
demonstrate the benefits of a coordinated system of neurotrauma and
rehabilitation care and to conduct innovative research on all aspects
of care for those who sustain TBI. The mission of the TBIMS program is
to improve the lives of persons who experience TBI and their families
by creating and disseminating new knowledge about the natural course of
TBI and rehabilitation treatment and outcomes for individuals who
sustain TBI. NIDRR currently funds 14 TBIMS centers throughout the
United States. (Additional information on the TBIMS centers can be
found at http://www.naric.com). These centers provide comprehensive
systems of brain injury care to individuals who sustain TBI. They also
conduct TBI research, including clinical research and the analyses of
standardized data in collaboration with other related projects. The
research activities of the TBIMS centers include participation in joint
research module projects, which range from pilot research to more
extensive studies. TBIMS centers also are required to contribute
information on common data elements to a centralized TBIMS database.
(Additional information on the TBIMS database can be found at
http://www.tbindsc.org.) To date, TBIMS centers have contributed 6157 cases
to the TBIMS database, with followup data extending to 15 years post
injury.
In 2003 NIDRR leveraged the capacity of the TBIMS program by
funding large-scale collaborative research projects.
[[Page 50521]]
These collaborative projects included a randomized controlled trial of
the effectiveness of amantadine hydrochloride in promoting recovery of
functioning following TBI, and a study of the effect of scheduled
telephone intervention on outcomes after TBI. Through the funding of
this priority, the TBIMS program will continue to serve as a platform
for multi-site research that contributes to evidence-based
rehabilitation interventions and improves the lives of individuals with
TBI.
References
Cifu, D.X., Kreutzer, J.S., Kolakowsky-Hayner, S.A., Marwitz, J.H.,
& Englander, J. (2003). The Relationship Between Therapy Intensity
and Rehabilitative Outcomes After Traumatic Brain Injury: A
Multicenter Analysis. Archives of Physical Medicine and
Rehabilitation, 84(10): 1441-8.
Dikmen, S.S., Machamer, J.E., Powell, J.M., & Temkin, N.R. (2003).
Outcome 3 to 5 Years After Moderate to Severe Traumatic Brain
Injury. Archives of Physical Medicine and Rehabilitation, 84(10):
1449-57.
Langlois, J.A., Rutland-Brown, W., & Thomas, K.E. (2004). Traumatic
Brain Injury in the United States: Emergency Department Visits,
Hospitalizations, and Deaths. Atlanta, GA: Centers for Disease
Control and Prevention, National Center for Injury Prevention and
Control.
National Institute of Neurological Disorders and Stroke (NINDS).
(2002, February). Traumatic Brain Injury: Hope Through Research.
Bethesda, MD: National Institute of Health. NIH Publication No. 02-
2478. See: http://www.ninds.nih.gov/disorders/tbi/detail--tbi.htm.
Sarajuuri, J.M., Kaipio, M.L., Koskinen, S.K., Niemela, M.R., Servo,
A.R., & Vilkki, J.S. (2005). Outcome of a Comprehensive
Neurorehabilitation Program for Patients with Traumatic Brain
Injury. Archives of Physical Medicine and Rehabilitation, 86(12):
2296-302.
Thurman, D.J., Alverson, C.A., Dunn, K.A., Guerrero, J., & Sniezek,
J.E. (1999). Traumatic Brain Injury in the United States: A Public
Health Perspective. Journal of Head Trauma Rehabilitation, 14(6):
602-615.
Proposed Priority
The Assistant Secretary proposes a priority for Disability and
Rehabilitation Research Projects (DRRPs) on Traumatic Brain Injury
Model Systems (TBIMS) Collaborative Projects. Each DRRP under this
priority must conduct research that contributes to evidence-based
rehabilitation interventions, including, but not limited to, medical,
psychological, vocational, and social interventions for the purpose of
improving the lives of individuals with traumatic brain injury (TBI).
To be eligible under this priority, an applicant must be currently
funded under NIDRR's TBIMS program.
Under this priority, each DRRP must be designed to contribute to
the following outcomes:
(a) Increased utilization of the TBIMS capacity. The DRRP must
contribute to this outcome by collaborating with three or more of the
NIDRR-funded TBIMS centers (for a minimum of four TBIMS sites).
Note: Applicants under this priority may propose to include
other TBI research sites that are not participating in a NIDRR-
funded TBIMS program in their collaborative research projects.
(b) Improved long-term outcomes of individuals with TBI. The DRRP
must contribute to this outcome by using clearly identified research
designs to conduct collaborative research on questions of significance
to TBI rehabilitation. The DRRP's research must focus on one or more
specific domains identified in NIDRR's Final Long-Range Plan for FY
2005-2009, including health and function, participation and community
living, technology, and employment, and must be designed to ensure that
the research study has appropriate research hypotheses and methods to
generate reliable and valid findings.
In addition, the DRRP must address the following requirements:
Demonstrate the capacity to carry out collaborative,
multi-site research projects, including the ability to coordinate
research among centers; maintain data quality; and adhere to research
protocols, confidentiality requirements, and data safety requirements.
Coordinate with the NIDRR-funded Model Systems Knowledge
Translation Center to provide scientific results and information for
dissemination to clinical and consumer audiences. (Additional
information on this center can be found at
http://uwctds.washington.edu/projects/msktc.asp).
Priority 5--Classification and Measurement of Medical Rehabilitation
Interventions
Background
One of the central objectives of NIDRR-funded medical
rehabilitation research is to ``increase the number of interventions
demonstrated to be efficacious in improving health and function
outcomes in targeted disability populations'' (NIDRR Long Range Plan,
2005-2009). To demonstrate that a treatment is efficacious, both the
intervention and the intended outcome must be operationally defined and
measured in a rigorous way.
NIDRR-sponsored researchers have been leaders in the development of
widely used outcomes measures that are employed to help determine the
impact of medical rehabilitation on the health and function of
individuals with disabilities, as well as the impact of medical
rehabilitation on the participation of these individuals in society.
While the ability to measure outcomes of medical rehabilitation
continues to mature through recent and ongoing NIDRR-sponsored
research, the ability to classify, measure, and replicate specific
interventions within the complex medical rehabilitation process is
still in its infancy. A recent analysis of published research on
medical rehabilitation interventions indicates that nearly two-thirds
of articles fail to describe adequately the rehabilitative treatment
being evaluated (Dijkers et al., 2002).
Medical rehabilitation has been referred to as a ``black box''
because the wide-range of interventions that take place within
rehabilitation settings have not been classified or measured in a
systematic way (DeJong et al., 2004). Determining the components of the
medical rehabilitation process that positively impact outcome (i.e.,
the ``active ingredients'') is challenging. This is due to the
simultaneous delivery of inter-related treatments by a variety of
allied health professionals to individuals with unique needs.
Development of a treatment taxonomy (i.e., a systematic method for
classifying and measuring rehabilitation interventions) will promote
the quality and rigor of rehabilitation research and will foster the
transfer of evidence-based treatments into clinical practice (Whyte,
2003).
In the past, NIDRR has sponsored rehabilitation outcomes research
that can serve as a basis for future efforts to develop a taxonomy of
medical rehabilitation interventions. For instance, a recent NIDRR-
funded stroke outcomes research project involved the creation of point-
of-contact forms for recording the delivery of rehabilitation
interventions provided by physical therapists (Latham et al., 2005),
occupational therapists (Richards et al., 2005), speech-language
pathologists (Hatfield et al., 2005), and other allied health
professionals. A major strength of this project was that it relied upon
the rich experiences and expertise of front-line rehabilitation
clinicians to create detailed forms for collecting data about specific
interventions. A limitation of this bottom-up, inductive approach to
classifying and measuring rehabilitation
[[Page 50522]]
interventions is its general lack of a theoretical foundation. A
theoretical foundation would have the benefit of guiding the collection
and analysis of treatment and outcomes data, and increase the field's
ability to see how seemingly disparate treatments fit together into a
coherent framework for rehabilitation practice and functional recovery
(DeJong et al., 2004). Efforts to develop rehabilitation intervention
taxonomies must be guided by treatment theories in order to increase
the likelihood that ``active ingredients'' of rehabilitative care can
be isolated and replicated (Whyte, 2006).
Other clinical fields, such as nursing (Dochterman & Bulechek,
2004), have been actively developing intervention taxonomies to guide
clinical service delivery, rigorous clinical documentation, and
effectiveness research in a wide range of nursing sub-fields.
Literature describing intervention taxonomies and their development in
other fields are likely to be instructive to those engaged in the
development of a medical rehabilitation treatment classification
system.
References
DeJong, G., Horn, S., Gassaway, J., Slavin, M., & Dijkers, M.
(2004). Toward a Taxonomy of Rehabilitation Interventions: Using an
Inductive Approach to Examine the ``Black Box'' of Rehabilitation.
Archives of Physical Medicine and Rehabilitation. 85(4): 678-686.
Dijkers, M., Kropp, G., Esper, R., Yavuzer, G., Cullen, N., &
Bakdalieh, Y. (2002). Quality of Intervention Research Reporting in
Medical Rehabilitation Journals. American Journal of Physical
Medicine and Rehabilitation. 81(1): 21-33.
Dochterman, J. & Bulechek, G. (Eds.). Nursing Interventions
Classification (NIC) (4th ed.). St. Louis, MO: Mosby.
Hatfield, B., Millet, D., Coles, J., Gassaway, J., Conroy, B., &
Smout, R. (2005). Characterizing Speech and Language Pathology
Outcomes in Stroke Rehabilitation. Archives of Physical Medicine and
Rehabilitation. 86(S2): S61-S72.
Latham, K., Jette, D., Slavin, M., Richards, L., Procino, A., Smout,
R., & Horn, S. (2005). Physical Therapy During Stroke Rehabilitation
for People With Different Walking Abilities. Archives of Physical
Medicine and Rehabilitation. 86(S2): S41--S50.
National Institute on Disability and Rehabilitation Research (NIDRR)
Final Long Range Plan, 2005-2009. Page 8187.
http://www.ed.gov/about/offices/list/osers/nidrr/policy.html.
Richards, L., Latham, N., Jette, D., Rosenberg, L., Smout, R., &
DeJong, G. (2005). Characterizing Occupational Therapy in Stroke
Rehabilitation. Archives of Physical Medicine and Rehabilitation.
86(S2): S51-S60.
Whyte, J. (2006). Using Treatment Theories to Refine the Designs of
Brain Injury Rehabilitation Treatment Effectiveness Studies. Journal
of Head Trauma Rehabilitation. 21(2): 99-106.
Whyte, J. (2003). It's More Than a Black Box; It's a Russian Doll:
Defining Rehabilitation Treatments. American Journal of Physical
Medicine and Rehabilitation. 82(8): 639-652.
Proposed Priority
The Assistant Secretary for Special Education and Rehabilitative
Services proposes a priority for a Disability Rehabilitation Research
Project (DRRP) on Classification and Measurement of Medical
Rehabilitation Interventions. This DRRP must conduct research and
development toward the creation of a taxonomy of medical rehabilitation
interventions. Under this priority, the DRRP must be designed to
contribute to the following outcomes:
(a) Enhanced research capacity and improved clinical practice in
the field of medical rehabilitation. The DRRP must contribute to this
outcome by conducting research to develop validated methods for the
systematic classification of the broad range of medical rehabilitation
interventions delivered by rehabilitation physicians, physical
therapists, occupational therapists, speech language pathologists,
rehabilitation nurses, rehabilitation psychologists, and other allied
health professionals.
(b) Enhanced research capacity and improved clinical practice in
the field of medical rehabilitation through the application of one or
more treatment theories to guide the development of a rehabilitation
treatment taxonomy.
(c) Collaboration with relevant NIDRR-sponsored projects, such as
the Rehabilitation Research Training Center on Measuring Rehabilitation
Outcomes, and other projects as identified through consultation with
the NIDRR project officer.
Priority 6--Vocational Rehabilitation Service Models for Individuals
With Autism Spectrum Disorders
Background
In recent years, policy makers, educators, and rehabilitation
service providers have become increasingly aware of the critical
shortage of services available to youth and young adults with Autism
Spectrum Disorders (ASDs), including vocational rehabilitation services
(Dew & Alan, 2007). ASDs are a group of lifelong developmental
disabilities that include autistic disorder, pervasive developmental
disorder-not otherwise specified, and Asperger disorder. ASDs are
characterized by impairments in social interactions and verbal and
nonverbal communication, as well as the presence of repetitive or
unusual behaviors and interests (Centers for Disease Control and
Prevention (CDC), 2006a). The severity of impairments can range from
mild to severe. Recent prevalence estimates vary, indicating that ASD
occurs in 2 to 6 individuals per 1000 individuals, that is, between 1
in 500 and 1 in 166 children have an ASD. ASDs are four times more
likely to occur in boys than in girls. The CDC (2006b) reported that
ASDs are more prevalent than certain other childhood disabilities, such
as cerebral palsy (2.8 per 1000 children), hearing loss (1.1 per 1000
children), vision impairment (0.9 per 1000 children), and Downs
syndrome (1.25 per 1000 children) (CDC, 2006b). ASDs usually are
diagnosed before the age of three, and the effects are lifelong,
although impairments may be attenuated with intervention.
Like other transition-age youth with disabilities, students
diagnosed with ASD who have turned 22 or graduated from high school
with a regular diploma generally no longer have a legal right to
appropriate transition services, such as life skills training,
transportation, vocational training, and individual and family
counseling, under the Individuals with Disabilities Education Act
(IDEA) (National Longitudinal Transition Study-2 (NLTS-2) 2005). Large
proportions of youth with ASD rated low on self-care tasks, functional
cognitive skills, social skills and communication when compared to the
entire population of youth with disabilities served under IDEA (NLTS-2,
2005). Many families find that the services provided to individuals
diagnosed with ASD are not tailored to the needs of the children and
young adults in this population. Families also report that locating,
accessing, and financing needed services for these young adults
requires navigating complicated public and private medical, social, and
vocational rehabilitation service systems (American Society of Autism,
2001).
In 2005, fewer than 2,000 individuals with ASDs received vocational
rehabilitation services. Of these individuals, only 1,200 were
successfully employed (Dew & Alan, 2007). Of the youth with ASDs who
were out of school one year or more, only 1 in 5 reported receiving
services from a vocational rehabilitation State agency. These youth
with ASDs also were less likely to be employed than youth with other
disabilities, and the
[[Page 50523]]
employed youth with ASDs worked fewer hours than employed youth with
other disabilities (NLTS-2, 2005). Increased vocational and
rehabilitation interventions are needed if these individuals are to
experience vocational and economic success equal to the success of
transition-age youth without ASD.
References
Autism Society of America. (2001). Position Paper on The National
Crisis in Adult Services for Individuals with Autism A Call to
Action. See: http://www.autismservicescenter.org/articles2.htm.
Centers for Disease Control and Prevention. (2006a). Fact sheet: CDC
Autism research. See: http://www.cdc.gov/ncbddd/autism/index.htm.
Centers for Disease Control and Prevention. (2006b). How common are
Autism Spectrum Disorders (ASD)? See:
http://www.cdc.gov/ncbddd/autism/asd--common.htm.
Dew, D. & Alan, G. (2007). Rehabilitation of Individuals With Autism
Spectrum Disorders (Institute on Rehabilitation Issues Monograph No
32). Washington, DC: The George Washington University, Center for
Rehabilitation Counseling Research and Education.
U.S. Department of Education, Institute of Education Sciences,
National Center for Special Education Research. (2005). National
Longitudinal Transition Study-2 (NLTS2), Wave 3 parent interview and
youth interview/survey. (This information has not yet been published
on the NLTS-2 Web site. It will be published sometime early next
year). \
Proposed Priority
The Assistant Secretary for Special Education and Rehabilitative
Services proposes a priority for a Disability Rehabilitation Research
Project (DRRP) on Vocational Rehabilitation Service Models for
Individuals with Autism Spectrum Disorders (ASDs). This DRRP must
conduct research on vocational rehabilitation (VR) service models for
individuals with ASDs that contributes to evidence-based rehabilitation
interventions to improve the lives of individuals with ASDs. Under this
priority, the DRRP must be designed to contribute to one or both of the
following outcomes:
(a) Improved vocational and postsecondary education outcomes of
individuals with ASDs. The DRRP must contribute to this outcome by
developing or testing VR intervention strategies for individuals with
ASDs, the measures needed to assess the effectiveness of VR
intervention strategies for individuals with ASDs, or both.
(b) Improved long-term vocational and postsecondary education
services for individuals with ASDs. The DRRP must contribute to this
outcome by analyzing the factors affecting the organization and
delivery of these services to individuals with ASDs and by recommending
changes that could improve these service delivery mechanisms.
Priority 7--Center on Knowledge Translation for Assistive Technology
Transfer
Background
While billions of dollars are expended on technology-related
research and development efforts in the United States each year
(Association of University Technology Managers, 2005), very little of
this funding is applied toward development of technology to improve the
lives of individuals with disabilities (National Council on Disability,
2000). NIDRR addresses this critical niche with two grant programs that
are dedicated to the application of technology and the development of
products and devices that are intended to improve the lives of
individuals with disabilities: The Rehabilitation Engineering Research
Centers (RERC) and Small Business Innovation Research (SBIR) programs.
For 30 years, the RERC program and its predecessor, the
Rehabilitation Engineering Centers program, have been a major force in
the development of technology to enhance independent function and
societal participation for individuals with disabilities. For over a
decade, NIDRR's SBIR program has encouraged small businesses to explore
their technological potential by supporting proof of concept
investigations of prototype devices intended to benefit individuals
with disabilities.
In addition to supporting the research and development of products
and devices that are designed to improve the lives of individuals with
disabilities through its RERC and SBIR programs, NIDRR is also
expected, under section 200(3)(D) of the Rehabilitation Act of 1973, as
amended, to promote the transfer of rehabilitation technology to
individuals with disabilities through research and demonstration
projects.
The term ``technology transfer'' has been defined as the process by
which university-developed technologies are commercialized (Powers,
2004) and, more specifically, as the ``transmittal of developed ideas,
products, and techniques from a research environment to one of
practical application by consumers'' (National Council on Disability,
2000). The processes involved in technology transfer are understood to
be an important component of knowledge translation (KT), which refers
to the steps between the generation of knowledge and its application to
produce beneficial outcomes for society (Canadian Institutes for Health
Research, 2005).
Technology transfer for individuals with disabilities is a specific
subset of the current technology transfer effort. Technology transfer
for products intended for use by individuals with disabilities is often
difficult because of the small markets served by any one particular
assistive technology product or device. While several government and
private agencies are working to promote technology transfer for larger
and more lucrative markets, very few Federal efforts focus on the
transfer of technology for use by individuals with disabilities
(National Council on Disability, 2000). Not only is NIDRR mandated to
fill this gap, but it is well positioned to do so, given the research
and development work supported and the scientist-market networks
established through its RERC and SBIR programs.
Research from the broader technology transfer field provides
limited guidance on how to improve technology transfer for individuals
with disabilities. Although some researchers have examined the
processes involved in technology transfer as well as methods for
evaluating transfer efforts such as best practice analyses (e.g., Erich
& Gutterman, 2003; Leahy, 2003; Tornatzky, 2001), research in this area
is still limited. For example, best practices analyses have generally
involved qualitative case descriptions rather than systematic tests of
the models, methods, and measures used for successful technology
transfer. A strong need remains for the systematic review of existing
models, methods, and measures as well as for the identification of best
practices in technology transfer. Once identified, best practices for
technology transfer must be adopted by key stakeholders. Training and
technical assistance have been named as important methods for promoting
the adoption of best practices and, thus, for facilitating the success
of the commercialization process (Canadian Institutes of Health
Research, 2005).
Current Federal investments are attempting to meet the need for
technology transfer research generally, but little research has been
devoted to examining the potential relevance, applicability, or
usability of general technology transfer research within the specific
subfield of assistive technology for individuals with disabilities
(National Council on Disability, 2000).
[[Page 50524]]
The need for further technology transfer research is especially
acute among those who are developing and attempting to make
technologies, products, and devices for individuals with disabilities.
References
Association of University Technology Managers (2005). AUTM U.S.
Licensing Survey: FY 2005. Northbrook, IL. See:
http://www.autm.net/surveys/dsp.surveyDetail.cfm?pid=33.
Canadian Institutes of Health Research. (2005). CIHR's
commercialization and innovation strategy. Ottawa, Canada. See:
http://www.cihr-irsc.gc.ca/e/30162.html.
Erlich, J.N. & Gutterman, A. (2003). A practical view of strategies
for improving Federal technology transfer. Journal of Technology
Transfer, 28, 215-226.
Leahy, J.A. (2003). Paths to market for supply push technology
transfer. Journal of Technology Transfer, 28, 305-317.
National Council on Disability. (2000). Federal Policy Barriers to
Assistive Technology. See: http://www.ncd.gov/newsroom/publications/2000/assisttechnology.htm.
Powers, J.B. (2004). R&D funding sources and university technology
transfer: What is stimulating universities to be more
entrepreneurial? Research in Higher Education, 45(1), 1-23.
Tornatzky, L.G. (2001). Benchmarking university-industry technology
transfer: A six year retrospective. Journal of Technology Transfer,
26, 269-277.
Proposed Priority
The Assistant Secretary for Special Education and Rehabilitative
Services proposes a priority for a Disability and Rehabilitation
Research Project to serve as the Center on Knowledge Translation for
Assistive Technology Transfer (Center). The Center must conduct
rigorous research, development, technical assistance, dissemination,
and utilization activities to increase successful knowledge translation
(KT) for technology transfer of products developed by NIDRR-funded
technology grantees.
The Center must partner with key stakeholders such as trade and
professional associations, and relevant industry representatives, and
focus on no more than three of the following technology areas, which
are referenced in the NIDRR Long-Range Plan, 2005-2009: Sensory,
Communication, Informational Technology and Telecommunications, and
Environmental Access.
Under this priority, the Center must be designed to contribute to
the following outcomes:
(a) Improved understanding of barriers to and facilitators of
successful KT for technology transfer in different industries related
to NIDRR's technology portfolio. The Center must contribute to this
outcome by--
(1) Identifying and compiling existing research-based knowledge
about barriers to and facilitators of successful KT for technology
transfer; and
(2) Conducting research on barriers to and facilitators of
successful KT for technology transfer related to the technology areas
on which the Center focuses.
(b) Advanced knowledge of best practices in KT for technology
transfer. The Center must contribute to this outcome by--
(1) Identifying existing models, methods, or measures of KT for
technology transfer in different industries related to NIDRR's
technology portfolio;
(2) Further developing and testing models, methods, or measures in
the technology areas on which the Center focuses; and
(3) Establishing best technology transfer practices that can be
used to effectively implement and evaluate the success of technology
transfer activities in the technology areas on which the Center
focuses.
(c) Increased utilization of the validated best practices for KT
for technology transfer. The Center must contribute to this outcome by
providing training and technical assistance to NIDRR-funded technology
grantees to implement and evaluate the success of such practices.
Priority 8--Asset Accumulation and Economic Self-Sufficiency for
Individuals With Disabilities
Background
The availability of savings and assets are important to all
individuals because they promote and allow investment in long-term
goals such as education and home ownership. Savings and assets are also
associated with increased household stability, community involvement,
political participation, and self-sufficiency in the general population
(Abt Associates, 2000).
For individuals with disabilities, the availability of financial
savings and assets facilitates progress toward a wide range of
community participation goals. Financial savings and assets can
facilitate this progress in numerous ways, such as making it possible
to purchase needed assistive technology (AT), make down payments on a
home, modify one's home for greater accessibility, start a business, or
pay for college (Putnam et al., 2005). Little is known about asset
accumulation patterns among individuals with disabilities. One of the
few relevant studies comparing individuals with and without
disabilities indicates that individuals with musculoskeletal conditions
and related health difficulties have fewer assets than those without
musculoskeletal conditions (Yelin, 1997). Because working-age adults
with disabilities are more likely than their non-disabled counterparts
to live in poverty (Weathers, 2005) and are less likely to be employed
(U.S. Census Bureau, 2002), they have less opportunity to accumulate
savings and other assets. However, being low-income does not preclude
savings and asset accumulation (Beverly, 1997).
Research is required to generate new knowledge about both the
barriers to, and facilitators of, savings and asset accumulation for
individuals with disabilities. These barriers and facilitators are
likely to exist at both the individual and system levels. At the
individual level, the following factors have been shown to be
associated with asset levels in the general population: income level,
education level, employment status, marital status, motivation to save,
racial and ethnic status, age, financial literacy, and maintenance of a
bank account, among others (Putnam et al., 2005; Beverly, 1997) . In
addition, factors associated with asset accumulation that are specific
to individuals with disabilities may include type of disabling
condition, disability severity, and age-of-onset.
In addition to the individual-level factors described in the
previous paragraph, there are also a number of barriers to, and
facilitators of, asset accumulation at the system level. For example,
individuals with disabilities who participate in Federal income support
programs are placed under strict asset limits that preclude substantial
accumulation of savings (Stapleton et al., 2006) . Low employment rates
among individuals with disabilities are associated with reduced access
to institutionalized saving mechanisms such as pensions or payroll
deductions for retirement savings accounts (Beverly, 1997) . Sub-
optimal access to bank buildings and general financial services for
individuals with disabilities may also reduce asset accumulation
opportunities (Putnam et al., 2005).
New knowledge about both the barriers to, and facilitators of,
asset accumulation must be applied to the development of targeted
interventions or to tailoring currently existing asset accumulation
interventions to the specific needs and circumstances of individuals
with disabilities. Financial literacy education, for example, could
[[Page 50525]]
be tailored to address the needs and circumstances of individuals with
specific disabling conditions (Cook, 2007). Individual Development
Accounts (i.e., special bank accounts that help individuals save money
for a specific purpose such as their education or the purchase of a
first home) could be established for savings goals that are
particularly relevant to individuals with disabilities, such as
offsetting out-of-pocket expenses for health care or personal
assistance services, or purchasing AT or home modifications.
References
Abt Associates (2000). Evaluation of Asset Accumulation Initiatives:
Final Report. See: http://abtassociates.com/reports/9031.pdf.
Beverly, S. (1997). How Can The Poor Save? Theory and Evidence on
Saving in Low Income Households. Center for Social Development.
Washington University, St. Louis, MO. Working Paper 97-3.
See: http://gwbweb.wustl.edu/csd/Publications/1997/wp97-3.pdf.
Cook, J. (2007). Asset Accumulation Through Individual Development
Accounts in Chicago. E-Newsletter published by the National
Rehabilitation Research and Training Center on Psychiatric
Disability, at the University of Illinois at Chicago. See:
http://www.wid.org/publications/?page=equity--test&sub=200702&topic=pm.
Putnam, M., Sherraden, M., Edwards, K., Porterfield, S., Wittenburg,
D., Holden, K., & Welch-Saleeby, P. (2005). Building Financial
Bridges to Economic Development and Community Integration:
Recommendations for a Research Agenda on Asset Development for
People With Disabilities. Journal of Social Work in Disability &
Rehabilitation. 4(3): 61-86.
Stapleton, D., O'Day, B., Livermore, G., & Imparato, A. (2006).
Dismantling the Poverty Trap. Disability Policy for the 21st
Century. Milbank Quarterly. 84(4): 701-732.
U.S. Census Bureau (2002). Survey of Income and Program
Participation. Table 5: Disability Status, Employment, and Annual
Earnings: Individuals 21 to 64 Years Old: 2002. See: http://www.census.gov/hhes/www/disability/sipp/disable02.html.
Weathers, R. (2005). A Guide to Disability Statistics From The
American Community Survey. Disability Statistics User Guide Series.
Employment and Disability Institute. Cornell University.
Yelin, E. (1997). The Earnings, Income, and Assets of Persons aged
51-61 With and Without Musculoskeletal Conditions. The Journal of
Rheumatology. 24(10): 2024-2030.
Proposed Priority
The Assistant Secretary for Special Education and Rehabilitative
Services proposes a priority for a Disability and Rehabilitation
Research Project (DRRP) on Asset Accumulation and Economic Self-
Sufficiency for Individuals with Disabilities. This DRRP must create
new research-based knowledge to promote asset accumulation among
individuals with disabilities. Under this priority, the DRRP must be
designed to contribute to the following outcomes:
(a) New knowledge of both the barriers to, and facilitators of,
asset accumulation and economic self-sufficiency for low- to moderate-
income individuals with disabilities and their families. This DRRP must
contribute to this outcome by focusing on the individual-level
characteristics that may affect savings and asset accumulation, as well
as system-level factors that include policies or programs designed to
create system-level incentives or disincentives to the accumulation of
assets.
(b) Improved asset accumulation outcomes and economic self-
sufficiency among individuals with disabilities. The DRRP must
contribute to this outcome by developing and testing no more than two
interventions that capitalize on the facilitators and address the
barriers to asset accumulation described in paragraph (a) of this
priority. These interventions may include the tailoring of existing
asset accumulation interventions to the specific needs and
circumstances of individuals with disabilities.
Priority 9--Technology Transfer in Resource-Limited Environments
Background
Growth in the number of older people in the populations of the
United States, Europe, Asia, and elsewhere suggest that there will be a
steady increase in demand over the next several decades for a broad
spectrum of assistive technology (AT) devices from hearing aids and
canes to advanced wheelchairs, specially equipped automobiles, and
personal communication devices. However, despite an increasing demand
for AT, many individuals with disabilities still cannot access the AT
devices they need (Bureau of Industry and Security, 2003).
Moreover, in developing countries, environmental constraints often
affect the usability of many AT products. For example, products that
are developed to enhance mobility may be affected by the lack of paved
roads. Lack of maintenance and repair facilities also may affect
distribution to, and usability of, technology by individuals with
disabilities in many parts of the world. Distance and limited
distribution networks tend to inhibit access to AT equipment and
services. These constraints are particularly significant in rural
areas, where farm accidents account for many disabilities, and in
countries where landmine injuries affect individuals whose primary
occupation is farming (Swanson, 2007).
In the United States, the U.S. Department of Agriculture has
recognized the needs of farmers and ranchers with disabilities by
funding the AgriAbility project, which provides training, technical
assistance, and information about technology and other services through
agricultural extension services. NIDRR has also funded research
projects to examine service delivery needs for farmers with
disabilities. While NIDRR and other Federal agencies have funded
successful projects in this area, and although these projects have
resulted in the development of low-tech products for use by individuals
with disabilities in the United States and in international settings,
there is still a persistent need to develop methods of moving new
technologies into practice in settings where resources may be scarce.
Many barriers to implementing knowledge translation (KT) strategies
for technology development also exist. The three major barriers to the
acquisition of technology products in developing countries, and certain
parts of the United States, are: lack of awareness of their existence
or how to acquire them, lack of necessary materials to produce them,
and lack of expertise needed to produce them locally (Jeserich, 2003a;
Jeserich, 2003b; Ripat & Booth, 2005; Robitaille, 2003).
Several models exist to guide the development, manufacture, and
distribution of low-cost, high-quality products in developing countries
or economically disadvantaged areas within the United States. Each of
these models highlights different aspects of product development,
manufacturing or distribution processes. For example, in the charitable
model, it is common to use regional distribution points to make
products available to those who need them. Likewise, the workshop model
focuses on training individuals to construct products that are needed
by individuals in their community by using locally available resources,
and the manufacturing model requires teaching individuals to construct
products by setting up local factories and distributing the products
regionally or nationally. The globalization model requires that an
established company expand into a region either by establishing a
factory or importing products there (Pearlman et al., 2006).
None of these models, however, offers a universal solution to the
challenge of
[[Page 50526]]
designing, developing, manufacturing, and distributing low-cost, high-
quality products to individuals in developing countries or in
economically disadvantaged regions of the United States. Different
aspects of these models work well under different environmental
conditions. Research is needed to expand our understanding of how best
to foster the transfer of technology in these settings.
References
Canadian Institutes of Health Research (CIHR) (2005). CIHR IRSC
Innovation in action: Knowledge translation strategy--2004-2009.
Ottawa: See http://www.cihr-irsc.gc.ca/e/documents/kt--strategy--2004-2009--e.pdf.
Jeserich, M. (2003a, January 15). Building Appropriate Chairs for
the Developing World: Whirlwind Wheelchair International brings
access to the third world. AT Journal, 65. See:
http://www.atnet.org/news/2003/jan03/011501.htm.
Jeserich, M. (2003b, February 1). Cubans make due with limited
assistive technology: Even with a more independent culture, Cuba's
streets and lack of resources provide barriers. AT Journal, 66. See:
http://www.atnet.org/news/2003/feb03/020101.htm.
National Institute on Disability and Rehabilitation Research. Notice
of Final Long Range Plan for Fiscal Years 2005-2009. Pages: 8165-
8200. http://www.ed.gov/about/offices/list/osers/nidrr/policy.html.
Pearlman, J., Cooper, R.A., Zipfel, E., Cooper, R., & McCartney, M.
(2006). Towards the development of an effective technology transfer
model of wheelchairs to developing countries. Disability and
Rehabilitation: Assistive Technology, 1 (1-2), 103-110.
Ripat, J. & Booth, A. (2005). Characteristics of assistive
technology service delivery models: Stakeholder perspectives and
preferences. Disability and Rehabilitation, 27(24), 1461-1470.
Robitaille, S. (2003, August 21). Assistive tech needs a hand in DC.
Business Week Online.
Swanson, L. (1997). Canadian farmers with disabilities. Abilities,
30, pages 50-51.
U.S. Department of Commerce, Bureau of Industry and Security
(BIS) (2003). Technology Assessment of the U.S. Assistive Technology
Industry. Washington, DC: See:
http://www.bis.doc.gov/DefenseIndustrialBasePrograms/OSIES/DefMarketResearchRpts/assisttechrept/index.htm.
Proposed Priority
The Assistant Secretary for Special Education and Rehabilitative
Services proposes a priority for a Disability Rehabilitation Research
Project (DRRP) on Technology Transfer in Resource-Limited Environments.
Under this priority, the DRRP must be designed to contribute to the
following outcomes:
(a) Increased access to, and acquisition of, high-quality, low-cost
technology products by individuals with disabilities who need them. The
DRRP must contribute to this outcome by conducting research to evaluate
the application of various models of transferring technology products
to individuals with disabilities in resource-limited environments,
either in the United States or abroad. The DRRP's research must examine
the relationship of factors such as type of technology, delivery system
options, socio-economic conditions, and disability type, on successful
transfer of needed technologies to individuals with disabilities. NIDRR
is particularly concerned about providing technology to support
individuals engaged in agricultural occupations due to a significant
need for AT by this population.
(b) Increased awareness by individuals with disabilities of high-
quality, low-cost technology products, already developed or in
development, for use in resource-limited environments. The DRRP must
contribute to this outcome by conducting research on methods of
providing information on available products to individuals with
disabilities and their caregivers in resource-limited environments in
the United States, developing countries, or both. The DRRP's research
must examine the relationship of factors, such as literacy rates and
the availability of print, Internet, or other communication resources,
as well as socioeconomic factors and disability type on effective
strategies to increase awareness among individuals with disabilities in
these areas.
Priority 10--Research and Knowledge Translation Center for Individuals
With Disabilities and Their Families
Background
In the United States, there are approximately 20.3 million
households in which at least one individual has a disability. This
includes households in which at least one child under the age of 18 has
a disability and those in which at least one adult has a disability.
NIDRR has funded research on children with disabilities and their
families (e.g., the Rehabilitation Research and Training Center on
Policies Affecting Families of Children With Disabilities), as well as
on adults with disabilities who are parents of children under the age
of 18 (e.g., the National Resource Center for Parents with
Disabilities). The family is a critical unit of analysis in both of
these important research areas.
It is necessary to understand the experiences of individuals with
disabilities and their families as they attempt to navigate programs
and service delivery systems that are critical to their participation
in society. The needs and experiences of individuals with disabilities
and their families differ based on the underlying condition and age of
the individual, as well as key sociodemographic characteristics and
structure of the individual's family. High-quality, in-depth research
on these heterogeneous needs and experiences must serve as an empirical
basis for the ongoing development, delivery, and evaluation of targeted
information resources for families that include an individual with a
disability, whether that individual is a child or the parent of a
child.
Individuals with disabilities and their families could benefit from
research-based training and technical assistance resources that are
designed to help them navigate relevant programs and service delivery
systems more effectively (Mitchell & Sloper, 2002). These programs and
service delivery systems include, but are not limited to, childcare,
family law, long-term care, and health care programs and services.
Accordingly, NIDRR seeks to fund a center that will translate existing
research-based knowledge about these complex programs and service
delivery systems to ensure that such resources are available to
individuals with disabilities and their families. Additional work in
this area will help promote the achievement of one of NIDRR's primary
goals, the successful dissemination of research-based knowledge and
products for use by intended target audiences, including individuals
with disabilities and their families and caregivers (NIDRR Long Range
Plan, 2005-2009).
Research has been conducted on the many programs and service
delivery systems that individuals with disabilities and their families
must navigate. There is a need for translation of this research into
materials that can be used by individuals with disabilities and their
families as they make critical decisions and choices about the services
that are available to them. For example, the families of children with
disabilities could benefit from translation and widespread
dissemination of peer-reviewed research on child care services (Devore
& Bowers, 2006), respite and related support services (McGill,
Papachristoforou, & Cooper, 2006), and effectively meeting the complex
health care needs of children with disabilities
[[Page 50527]]
in the community (American Academy of Pediatrics, 2005).
In addition, adults with disabilities who are parents may come into
contact with components of the complex family law system that often
assume that disability precludes effective parenting (Kirshbaum &
Olkin, 2002). These components of the family law system include
statutes and case law related to custody, adoption, and divorce.
Translation of legal research on parenting with a disability (Odegard,
1993) may be useful to parents with disabilities and their families.
Parents with physical disabilities also would benefit from translation
of research on baby care adaptations (Tuleja & DeMoss, 1999), as well
as research on the more general experiences of parents with
disabilities (Wade, Mildon, & Matthews, 2007; Conley-Jung & Olkin,
2001).
Families that include one or more individuals with disabilities
must often make decisions about an array of options for providing and
financing the long-term services and supports that are necessary to
help the family member live and participate in the community. Research
on the effectiveness of various service delivery models (Hagglund,
Clark, Farmer, & Sherman, 2004; Benjamin, Matthias, & Franke, 2000)
could be translated into information that helps individuals with
disabilities and their families make critical long-term care decisions.
Regardless of the age of the family member with a disability,
working within the health care system to receive needed services is
important to maintaining health, function, and high levels of
participation in the community. The translation of peer-reviewed
research on health promotion programs (Ravesloot, Seekins, Cahill,
Lindgren, & Nary, 2006), health care coordination programs (Palsbo,
Mastal, & O'Donnell, 2006), and preventive care (Smeltzer, 2006) are
likely to be useful to individuals and their families as they make
decisions about their health and well being.
References
American Academy of Pediatrics (2005). Clinical Report: Helping
Families Raise Children with Special Health Care Needs at Home.
Pediatrics. 115(2): 507-512.
Benjamin, A., Matthias, R., & Franke, T. (2000). Comparing Consumer-
Directed and Agency Models For Providing Supportive Services at
Home. Health Services Research. 35(1): 351-366.
Conley-Jung, C. & Olkin, R. (2001). Mothers With Visual Impairments
or Blindness Raising Young Children. Journal of Visual Impairment
and Blindness. 91(1): 14-29.
Devore, S. & Bowers, B. (2006). Childcare for Children With
Disabilities: Families Search for Specialized Care and Cooperative
Childcare Partnerships. Infants & Young Children: An
Interdisciplinary Journal of Special Care Practices. 19(3): 203-212.
Hagglund, K., Clark, M., Farmer, J., & Sherman, A. (2004). A
Comparison of Consumer-Directed and Agency-Directed Personal
Assistance Services Programs. Disability and Rehabilitation. 26(9):
518-527.
Kirshbaum, M. & Olkin, R. (2002). Parents With Physical, Systemic,
or Visual Disabilities. Sexuality and Disability. 20(1): 65-80.
Mcgill, P., Papachristoforou, E., & Cooper, V. (2006). Support for
Family Carers of Children and Young People with Developmental
Disabilities and Challenging Behavior. Child: Care, Health &
Development. 32(2): 159-165.
Mitchell, W. & Sloper, P. (2002). Information that Informs Rather
Than Alienates Families With Disabled Children: Developing a Good
Model of Practice. Health and Social Care in the Community. 10(2):
74-81.
National Institute on Disability and Rehabilitation Research. Notice
of Final Long Range Plan for Fiscal Years 2005-2009. Page: 8174.
http://www.ed.gov/about/offices/list/osers/nidrr/policy.html.
Odegard, J. (1993). The Americans With Disabilities Act: Creating
``Family Values'' for Physically Disabled Parents. Law and
Inequality. 11: 533-653.
Palsbo, S., Mastal, M., & O'Donnell, L. (2006). Disability Care
Coordination Organizations: Improving Health and Function in People
With Disabilities. Lippincott's Case Management. 11(5): 255-264.
Ravesloot, C., Seekins, T., Cahill, T., Lindgren, S., & Nary, D.
(2006). Health Promotion for People With Disabilities: Development
and Evaluation of the Living Well With a Disability Program. Health
Education Research Online. Published on October 10, 2006. See:
http://her.oxfordjournals.org/cgi/content/abstract/cyl114v1.
Smeltzer, S. (2006). Preventive Health Screening For Breast and
Cervical Cancer and Osteoporosis in Women With Physical
Disabilities. Family and Community Health. 29(1 Suppl): 35S-43S.
Tuleja, C. & DeMoss, A. (1999). Baby Care Assistive Technology.
Technology and Disability. 11(1,2): 71-78.
Wade, C., Milton, R., & Matthews, J. (2007). Service Delivery to
Parents With An Intellectual Disability: Family-Centered or
Professionally Centered? Journal of Applied Research in Intellectual
Disabilities. 20(2): 87-98.
Proposed Priority
The Assistant Secretary for Special Education and Rehabilitative
Services proposes a priority for a Disability and Rehabilitation
Research Project (DRRP) to serve as the Research and Knowledge
Translation Center for Individuals with Disabilities and Their Families
(Center). The Center must conduct research on the experiences and
knowledge needs of individuals with disabilities and their families,
and translate these findings into training, technical assistance, and
informational resources.
The Center must focus on the knowledge needs of families that
include a child with a disability, an adult with a disability who is a
parent of at least one child under the age of eighteen, or both.
Under this priority, the Center must be designed to contribute to
the following outcomes:
(a) Increased knowledge about the experiences and information needs
of individuals with disabilities and their families, and how those
experiences and needs differ by variables such as condition type,
severity, and age, as well as key characteristics of other family
members and the overall structure of the family. The Center must
contribute to this outcome by synthesizing existing research and
advancing the knowledge base through the collection and analysis of
data about the experiences and knowledge needs of families that include
one or more individuals with a disability. Through this research and
analysis, the Center must examine the extent to which the needs of
individuals with disabilities and their families are being met by the
programs and service systems that are critical to their community
integration and participation (e.g., statutes and case law related to
custody, adoption, and divorce; health care; long-term care; assistive
technology provision programs; child care; transportation; and a wide
variety of related social support services).
(b) Improved participation and community integration of individuals
with disabilities. The Center must contribute to this outcome by
developing, implementing, and evaluating research-based training,
technical assistance, and informational resources that are targeted to
the specific knowledge needs of individuals with disabilities and their
families, as those needs are identified through the research activities
described in paragraph (a) of this priority, or other research-based
knowledge.
In addition, the Center must coordinate with relevant NIDRR
Knowledge Translation grantees to develop and implement a method for
identifying high-quality, research-based information for dissemination
to individuals with disabilities and their families.
[[Page 50528]]
Rehabilitation Research and Training Centers (RRTCs)
RRTCs conduct coordinated and integrated advanced programs of
research targeted toward the production of new knowledge to improve
rehabilitation methodology and service delivery systems, alleviate or
stabilize disability conditions, or promote maximum social and economic
independence for individuals with disabilities. Additional information
on the RRTC program can be found at:
http://www.ed.gov/rschstat/research/pubs/res-program.html#RRTC.
Statutory and Regulatory Requirements of RRTCs
RRTCs must--
Carry out coordinated advanced programs of rehabilitation
research;
Provide training, including graduate, pre-service, and in-
service training, to help rehabilitation personnel more effectively
provide rehabilitation services to individuals with disabilities;
Provide technical assistance to individuals with
disabilities, their representatives, providers, and other interested
parties;
Demonstrate in their applications how they will address,
in whole or in part, the needs of individuals with disabilities from
minority backgrounds;
Disseminate informational materials to individuals with
disabilities, their representatives, providers, and other interested
parties; and
Serve as centers of national excellence in rehabilitation
research for individuals with disabilities, their representatives,
providers, and other interested parties.
Priority 11--General Rehabilitation Research and Training Center (RRTC)
Requirements
Background
NIDRR proposes the following General RRTC Requirements priority
because it believes that the effectiveness of any RRTC depends on,
among other things, how well the RRTC coordinates its research efforts
with the research of other NIDRR-funded projects, involves individuals
with disabilities in its activities, and identifies specific
anticipated outcomes that are linked to its objectives in applying for
RRTC funding. Accordingly, NIDRR intends to use proposed Priority 11--
General RRTC Requirements in conjunction with each of the other RRTC
priorities proposed in this notice (i.e., priorities 12 through 21).
Proposed Priority
To meet this priority, the Rehabilitation Research and Training
Center (RRTC) must--
(a) Conduct a state-of-the-science conference on its respective
area of research by the fourth year of the grant cycle and publish a
comprehensive report on the final outcomes of the conference by the end
of the fourth year of the grant cycle. This conference must include
materials from the experts internal and external to the RRTC;
(b) Coordinate on research projects of mutual interest with
relevant NIDRR-funded projects as identified through consultation with
the NIDRR project officer;
(c) Involve individuals with disabilities in planning and
implementing its research, training, and dissemination activities, and
in evaluating the RRTC; and
(d) Coordinate with the appropriate NIDRR-funded Knowledge
Translation Centers and professional and consumer organizations, to
provide scientific results and information for dissemination to
policymakers, service providers, researchers, and others.
Priority 12--Enhancing the Health and Wellness of Persons With
Neuromuscular Diseases
Background
The term ``muscular dystrophy'' is used to refer to the more than
40 neuromuscular diseases (NMDs). The Muscular Dystrophies are
currently classified in nine types (Myotonic, Duchenne, Becker, Limb-
Girdle, Facioscapulohumeral, Congenital, Oculopharyngeal, Distal and
Emery-Dreifuss), and some of these are categorized into further
subtypes. NMDs affect individuals of both sexes at every stage of life:
infancy, adolescence, adulthood, and old age. Their effects range from
gradual loss of mobility and independence to severe disability and
death. The most common NMD is Duchenne/Becker Muscular Dystrophy
(DBMD). DBMD affects approximately 1 out of every 3,500 to 5,000 boys
(Single Gene Disorders and Disability, 2006).
Individuals with NMDs face health, psychosocial, and economic
problems that negatively affect their overall health and well-being, as
reported at the National Institutes of Health (NIH) ``Burden of Muscle
Disease Workshop,'' hosted by the National Institute of Arthritis and
Musculoskeletal and Skin Diseases (NIAMS) and the NIH Office of Rare
Diseases on January 26-27, 2005 (Burden of Muscle Disease Workshop,
2005). Neuromuscular diseases may contribute to significant health
problems because of muscle weakness, difficulty with exercise, fatigue,
poor endurance, weight problems (e.g., obesity), pulmonary
complications and associated sleep disorders. Research is needed to
generate new knowledge about secondary conditions of NMD that are not
as well understood--such as pain, reduced bone content, and metabolic
complications.
Exercise and nutrition have been a focus of rehabilitation
interventions because they are key factors in successful participation
in health and wellness programs for individuals with NMDs (Kilmer,
2002). However, due to the loss of functional muscle tissue from NMDs,
few studies have examined the response of individuals with NMDs to
cardiopulmonary testing and aerobic exercise training (McDonald, 2005).
In order to facilitate high-quality research in the areas of
cardiopulmonary testing and aerobic exercise training, the capacity to
measure physical, functional, and social participation outcomes must be
enhanced (Muscular Dystrophy Coordinating Committee Report, 2005)
through the development of new outcome measures, or validation of
existing measures in populations of individuals with NMD.
References
Burden of Muscle Disease Workshop Report, January 26-27, 2005. See:
http://www.niams.nih.gov/ne/reports/sci--wrk/2005/muscle--dis--summ.htm.
Kilmer, D.D. (2002). Response to Aerobic Exercise Training in Humans
with Neuromuscular Dis ease. American Journal of Physical Medicine
and Rehabilitation, 81(11 Suppl), S148-50.
McDonald, C. (2005). Childhood Neurological Disorders: crosscutting
breakout session. Neurorehabilitation and Neural Repair, 10(1), S91.
Muscular Dystrophy Coordinating Committee Report Scientific Working
Group, August 16-17, 2005. See:
http://www.ninds.nih.gov/find--people/groups/mdcc/MDCC--Action--Plan.doc
Single Gene Disorders and Disability (SGDD) (2006). See:
http://www.cdc.gov/ncbddd/duchenne/who.htm.
Proposed Priority
The Assistant Secretary for Special Education and Rehabilitative
Services proposes a priority for a Rehabilitation Research and Training
Center (RRTC) on Enhancing the Health and Wellness of Persons with
Neuromuscular Diseases (NMDs). This RRTC must conduct rigorous
research, training, technical assistance, and dissemination activities
to improve rehabilitation outcome measures and rehabilitation
interventions that can be applied in clinical or community-based
settings.
[[Page 50529]]
In doing so, the RRTC must focus on no more than two of the
following dimensions: Prevention or reduction of secondary conditions
(e.g., pain, fatigue, muscle weakness, associated sleep disorders,
metabolic complications); improved mobility; emotional well-being; and
access to community-based health promotion services and programs (e.g.,
fitness, recreation, and nutrition). Under this priority, the RRTC must
be designed to contribute to the following outcomes:
(a) Improved outcome measures for use with individuals with NMDs.
The RRTC must contribute to this outcome by identifying or developing
and testing methods and measures to assess health and rehabilitation
outcomes, participation in community-based programs, or both.
(b) Improved medical rehabilitation or community-based
rehabilitation interventions. The RRTC must contribute to this outcome
by identifying or developing and testing new rehabilitation
interventions, replicating promising practices or programs, or both.
Priority 13--Enhancing the Health and Wellness of Individuals With
Arthritis
Background
Approximately 60 million adults in United States will have
arthritis by the year 2020. Currently, approximately 21 million
individuals have osteoarthritis, and another 2.1 million have
rheumatoid arthritis (National Arthritis Action Plan, 1999). Arthritis
is the leading cause of disability in the United States for individuals
15 years of age and older, potentially limiting affected persons from
walking a few blocks or climbing a flight of stairs (Centers for
Disease Control and Prevention, Morbidity and Mortality Weekly Report,
(2007)). Arthritis is also the second leading cause of work-related
disability in the United States (Cakmak & Bolukbas, 2005).
Arthritis impacts an individual physically, emotionally, and
socially and is characterized by several factors such as pain,
inflammation, damage to joint tissue, decreased mobility, fatigue,
stress, and depression. Developing interventions to alleviate arthritis
pain and functional limitations that are associated with arthritis are
particularly important. Exercise is an essential tool in managing
arthritis pain and stiffness and in improving mobility. Muscle strength
training is considered to be an important cornerstone of non-
pharmacological treatment for individuals with arthritis (Hakkinen,
2004). However, the rates of participation in regular exercise are
lower among individuals with arthritis than those without arthritis
(Barclay, 2006).
Arthritis also can lead to diminished enjoyment of, and
participation in, daily activities and community-based programs (e.g.,
going to church and socializing), which in turn can contribute to
feelings of isolation and depression. A depression management program
consisting of coordination of medications and counseling can reduce
both depression and arthritis pain and disability in older adults (Lin
et al., 2003).
Outcome measures are required to assess the effectiveness of
specific interventions to reduce the physical, functional, emotional,
and social sequelae of arthritis. While arthritis researchers have
access to effective measures of disease status, physical and functional
abilities, and quality of life, measures of social participation for
this population are less well developed (Backman, 2006). Research is
required to fill this gap in outcome measures through the development
of arthritis-specific measures of participation, or the validation of
existing measures of participation that have been developed for other
subpopulations of individuals with disabilities (Whiteneck et al.,
1992).
References
Backman, C.L. (2006). Outcomes Measures for Arthritis Care Research:
Recommendations from CARE III Conference. Journal of Rheumatology,
33, 1908-11.
Barclay, L. (2006). Perceived barriers to exercise identified for
patients with Arthritis. Arthritis Care Research 55:000-000. See:
http://www.medscape.com/viewarticle/541721.
Cakmak, A. & Bolukbas, N. (2005). Juvenile Rheumatoid Arthritis:
Physical Therapy and Rehabilitation. Southern Medical Journal,
98(2), 212-216.
Centers for Disease Control and Prevention, Morbidity and Mortality
Weekly Report, (2007). National and State Medical Expenditures and
Lost Earnings Attributable to Arthritis and Other Rheumatic
Condition--United States, 2003. See:
http://www.cdc.gov/mmwr/preview/mmwrhtml/mm5601a2.htm?s--cid=mm5601a2--e
Hakkinen, A. (2004). Effective and Safety of Strength Training in
Rheumatoid Arthritis. Current Opinion in Rheumatology, 16(2), 132-
137.
Lin, E., Katon, W., Von Korff, M., Tang, L., Williams, J., Kroenke,
K., Hunkeler, E., Harpole, L., Hegel, M., Arean, P., Hoffing, M.,
Della Penna, R., Langston, C. & Unutzer, J. (2003). Effect of
Improving Depression Care on Pain and Functional Outcomes Among
Older Adults With Arthritis: A Randomized Controlled Trial. Journal
of the American Medical Association. 290(18): 2428-2429.
National Arthritis Action Plan (1999): A Public Health Strategy.
See: http://www.arthritis.org/resources/about--naap.asp.
Whiteneck, G.G., Charlifue, S.W., Gerhart, K.A., Overholser, J.D., &
Richardson, G.H. (1992). Quantifying handicap: a new measure of
long-term rehabilitation outcomes. Archives of Physical Medicine and
Rehabilitation, 73(6), 519-26.
Proposed Priority
The Assistant Secretary for Special Education and Rehabilitative
Services proposes a priority for a Rehabilitation Research and Training
Center (RRTC) on Enhancing the Health and Wellness of Individuals with
Arthritis. This RRTC must conduct rigorous research, training,
technical assistance, and dissemination activities to improve
rehabilitation outcome measures and rehabilitation interventions that
can be applied in clinical or community-based settings.
In doing so, the RRTC must focus on no more than two of the
following dimensions: prevention or reduction of secondary conditions
(e.g., pain, fatigue, depression); improved mobility; emotional well-
being; and access to community-based health promotion services and
programs (e.g., fitness, recreation, and nutrition). Under this
priority, the RRTC must be designed to contribute to the following
outcomes:
(a) Improved outcome measures for use with persons with arthritis.
The RRTC must contribute to this outcome by identifying or developing
and testing methods and measures to assess health and rehabilitation
outcomes, participation in community-based programs, or both.
(b) Improved medical rehabilitation or community-based
rehabilitation interventions. The RRTC must contribute to this outcome
by identifying or developing and testing new rehabilitation
interventions, replicating promising practices or programs, or both.
Priority 14--Stroke Rehabilitation
Background
Approximately 730,000 individuals experience strokes in the United
States each year. Nearly five million individuals in the United States
today have survived a stroke. Stroke patients continue to be the
largest diagnostic group in medical rehabilitation, and stroke is often
associated with high levels of disability (American Heart Association,
2006).
With the help of new technologies, significant progress has been
made in the development of rehabilitation
[[Page 50530]]
interventions and in the assessment of outcomes for those who have
experienced a stroke. Examples of recent advances in rehabilitation
interventions and outcomes assessment include the Extremity Constraint-
Induced Therapy Evaluation (EXCITE), a repetitive training of upper
extremities on task-oriented activities that enhances functional
abilities of stroke survivors 3 to 9 months after stroke (Wolf et al.,
2006; Messe & Cucchiara, 2006). A novel and promising technology, the
BION, is an implantable neuromuscular stimulation device to treat
complications of paralysis and disuse atrophy, including shoulder
subluxation, hand contractures, drop foot, and osteoarthritis (Loeb et
al., 2006).
Given the large and growing incidence of stroke in the United
States and the high levels of physical and cognitive disability often
associated with stroke, there is a need for further research on
promising new interventions, such as constraint-induced (CI) therapy,
bodyweight-supported treadmill training (BWS-TT), electrical
stimulation, and robotic technology (Bassett, 2006). In addition,
research is needed to develop more sensitive measures of neuro-recovery
and post-stroke secondary health conditions, as well as to develop
interventions to prevent a variety of post-stroke secondary health
conditions such as fatigue (Gladstone et al., 2002; Roth, 2005).
References
American Heart Association (AHA) (2006). Heart Disease and Stroke
Statistics--2006 Update: A report from the American Heart
Association Statistics Subcommittee. See:
http://circ.ahajournals.org/cgi/content/short/113/6/e85.
Bassett, J. (2006). A Lifelong Journey. Advance for Directors in
Rehabilitation, 15(10), 42-48.
Gladstone, D.J., Danells, C.J., & Black, S.E. (2002). The fugl-meyer
assessment of motor recovery after stroke: a critical review of its
measurement properties. Neurorehabilitation and Neural Repairs,
16(3): 232-40. See: http://www.medscape.com/medline/abstract/12234086.
Loeb, G.E., Richmond F.J.R., & Baker L.L. (2006). The BION Devices:
Injectable interfaces with peripheral nerves and muscles.
Neurosurgery Focus, 20(5). See: http://www.medscape.com/viewarticle/542356.
Messe, S.R. & Cucchiara, B.L. (2006). Highlights of the
International Stroke Conference 2006. Neurology and Neurosurgery,
8(1). See: http://www.medscape.com/viewarticle/527458.
Roth, E. (2005). Aging Issues: Neurological Disorders: crosscutting
breakout session. Neurorehabilitation and Neural Repair, 10(1), S70.
Wolf, S.L., Weinstein, C.J., Miller, J.P., Taub, E., Uswatte, G.,
Morris, D., Giuliani, C., Light, K.E., & Nichols-Larsen, D. (2006).
Effect of constraint-induced movement therapy on upper extremity
function 3 to 9 months after stroke. Journal of the American Medical
Association, 296(17), 2095-2104.
Proposed Priority
The Assistant Secretary for Special Education and Rehabilitative
Services proposes a priority for a Rehabilitation Research and Training
Center (RRTC) on Stroke Rehabilitation. This RRTC must conduct rigorous
research, training, technical assistance, and dissemination activities
to improve rehabilitation outcome measures and rehabilitation
interventions that can be applied in clinical or community-based
settings.
In doing so, the RRTC must focus on no more than two of the
following dimensions: prevention or reduction of secondary conditions
(e.g., pain, fatigue, depression); improved mobility; emotional well-
being; and access to community-based health promotion services and
programs (e.g., fitness, recreation, and nutrition). Under this
priority, the RRTC must be designed to contribute to the following
outcomes:
(a) Improved outcome measures for use with persons with stroke. The
RRTC must contribute to this outcome by identifying or developing and
testing methods and measures to assess health and rehabilitation
outcomes, participation in community-based programs, or both.
(b) Improved medical rehabilitation or community-based
rehabilitation interventions. The RRTC must contribute to this outcome
by identifying or developing and testing new rehabilitation
interventions, replicating promising practices or programs, or both.
Priority 15--Personal Assistance Services (PAS) in the 21st Century
Background
In 2005, health-related problems resulted in about 3.8 million
adults needing help from another person with personal care activities,
and about 7.8 million adults requiring help from another person with
daily activities, such as household chores or shopping. Among adults
ages 75 and over, a rapidly growing population, about 10 percent
required help with personal care and 19 percent required help with
daily activities (Adams, Dey, & Vickerie, 2005; Population Projections
Branch, 2004). Most personal assistance services (PAS) are provided by
unpaid caregivers such as family members or friends; in 2004, over 44
million adults provided help with care to an adult family member or
friend (Naiditch & Wasan, 2006). However, paid personal and home care
aides held only about 701,000 jobs in 2004 (Bureau of Labor Statistics
(BLS), U.S. Department of Labor (DOL), 2006).
The demand for personal and home care aides is expected to increase
greatly over the next 10 years because of the aging of the U.S.
population (BLS, DOL, 2006). The expected increase in demand is
especially troubling because a labor shortage crisis in the available
pool of caregivers already exists. This labor shortage crisis has
``potentially negative consequences for quality of care and quality of
life'' for individuals requiring personal and home care (Stone &
Wiener, 2001). In addition, many unpaid caregivers themselves are aging
and face their own ``considerable personal toll--physically, mentally,
emotionally, and financially, and in terms of retirement insecurity,
lost jobs or other missed opportunities'' (Miller & Mor, 2006).
Finally, the need for an improved network of PAS providers extends
beyond day-to-day activities; there is also an emerging need for PAS
providers during emergencies and disaster situations (National Council
on Disability, 2006).
The cost of PAS can be covered by a variety of sources, depending
on a person's income and the type of services provided. For example,
individuals with disabilities who work and receive Supplemental
Security Income (SSI) benefits may deduct PAS performed in an
employment setting or in preparing for, or traveling to or from, the
workplace as an Impairment-Related Work Expense. This deduction is used
to calculate available income and ultimately the amount of a person's
SSI cash benefit (Social Security Administration, 2006). While the loss
of such benefits has frequently been seen as a hindrance to securing or
maintaining employment, there is little research on the economic impact
of covering PAS costs for adults who are working and not eligible for
public assistance. A study of elderly adults with disabilities also
suggests that the use of assistive technology by an individual with
disabilities reduces the number of PAS hours required for that
individual (Hoenig, Taylor, & Sloan, 2003). However, there has been
little research on the relationship between the use of AT by working-
age adults with disabilities and the number of PAS hours required by
those individuals.
[[Page 50531]]
References
Adams, P.F., Dey, A.N., & Vickerie, J.L. (2005). Summary Health
Statistics for the U.S. Population: National Health Interview
Survey, 2005. Series 10, No. 233 Provisional Report. Hyattsville,
MD: National Center for Health Statistics. See:
http://www.cdc.gov/nchs/data/series/sr--10/sr10--233.pdf.
Bureau of Labor Statistics, U.S. Department of Labor, Occupational
Outlook Handbook, 2006-07 Edition, Personal and Home Care Aides.
Washington, DC: Bureau of Labor Statistics, U.S. Department of
Labor. See: http://www.bls.gov/oco/ocos173.htm.
Hoenig, H., Taylor, D.H., & Sloan, F.A. (2003). Does Assistive
Technology Substitute for Personal Assistance Among the Elderly?
American Journal of Public Health, 93(2), 330-337.
Miller, E.A. & Mor, V. (2006). Out of the Shadows: Envisioning a
Brighter Future for Long-Term Care in America. Providence, RI: Brown
University Center for Gerontology and Health Care Research. See:
http://www/chcr.brown.edu/PDFS/BROWN--UNIVERSITY--LTC--REPORT--FINAL.PDF.
Naiditch, L. & Wasan, P. (2006). Evercare Study of Caregivers in
Decline: Findings from a National Survey. Bethesda, MD: National
Alliance for Caregiving. See:
http://www.caregiving.org/data/Caregivers%20in%20Decline%20Study-FINAL-lowres.pdf.
National Council on Disability (2006). The Impact Of Hurricanes
Katrina And Rita On People With Disabilities: A Look Back And
Remaining Challenges. Washington, DC: National Council on
Disability. See:
http://www.ncd.gov/newsroom/publications/2006/hurricanes--impact.htm.
Population Projections Branch (2004). U.S. Interim Projections by
Age, Sex, Race, and Hispanic origin. Washington, DC: U.S. Census
Bureau. See: http://www.census.gov/ipc/www/usinterimproj/.
Social Security Administration (2006). Understanding Supplemental
Security Income (SSI). Washington, DC: U.S. Social Security
Administration. See:
http://www.ssa.gov/notices/supplemental-security-income/ussi-2006.pdf.
Stone, R.I. & Wiener, J.M. (2001). Who Will Care For Us? Addressing
the Long-Term Care Workforce Crisis. Washington DC: The Urban
Institute.
Proposed Priority
The Assistant Secretary for Special Education and Rehabilitative
Services proposes a priority for a Rehabilitation Research and Training
Center (RRTC) on Personal Assistance Services (PAS) in the 21st
Century. This RRTC must conduct rigorous research, develop
interventions, and provide training that address future demands for PAS
and caregiving. Under this priority, the RRTC must be designed to
contribute to the following outcomes:
(a) Improved access to PAS by individuals with disabilities. The
RRTC must contribute to this outcome by: (1) Analyzing and describing
trends and needs of the population of PAS consumers; (2) identifying
gaps in programs and services; (3) developing effective evidence-based
interventions to address unmet needs for PAS; and (4) proposing
strategies to coordinate and secure PAS services during emergencies.
(b) A larger and better prepared paid and unpaid PAS workforce. The
RRTC must contribute to this outcome by: (1) Developing tools and
supports for unpaid caregivers that reflect the changing needs of
caregivers as they age; (2) developing strategies that lead to a PAS
workforce that is geographically diverse and that maximizes workforce
recruitment, retention, compensation and benefits, professional
training, development, and networking; and (3) identifying and
evaluating interventions and labor resources, such as job training
services, that help to improve workforce capacity of PAS providers.
(c) An understanding of the complexity of the economics of PAS. The
RRTC must contribute to this outcome by: (1) Analyzing the
interrelationship between the use of assistive technology, employment
supports, and PAS; and (2) analyzing the role of tax laws that affect
reimbursement for PAS.
Priority 16--Participation and Community Living for Individuals With
Psychiatric Disabilities
Background
Individuals with psychiatric disabilities have one of the lowest
rates of employment of any disability group--only 1 in 3 individuals
with psychiatric disabilities is employed (Kaye, 2002). They also
comprise the largest diagnostic category of working-aged adults
receiving Supplemental Security Income or Social Security Disability
Insurance (McAlpine and Warner, 2001).
In addition, individuals with psychiatric disabilities constitute a
large proportion of the homeless population. Of 2 million adults
experiencing an episode of homelessness, for example, 46 percent have a
psychiatric disability (Burt, 2001).
In April 2002, the President signed Executive Order 13263,
establishing a New Freedom Commission on Mental Health, and charged the
Commission with completing a comprehensive study of the mental health
service delivery system in the United States. The Commission's report,
Achieving the Promise: Transforming Mental Health Care in America, set
the course for public and private efforts across the country to improve
the state of mental health care (New Freedom Commission on Mental
Health, 2003). The Commission calls for a transformation of the mental
health service delivery system, focusing on recovery and resilience for
individuals with psychiatric disabilities. Recovery is, in part, ``the
process in which people are able to live, work, learn, and participate
fully in their communities,'' while resilience indicates ``the personal
and community qualities that enable us to rebound from adversity,
trauma, tragedy, threats, or other stresses--and to go on with life
with a sense of mastery, competence, and hope'' (New Freedom Commission
on Mental Health, 2003).
Being part of a community means being included, involved, and
valued; it means holding social roles that are meaningful. Inclusion
requires full access to opportunities and support in areas such as
employment, housing, education, health and mental health care,
recreation, social relationships, and other public and private sector
activities. Research, including NIDRR-funded research, has advanced the
knowledge base in these and other areas through a focus on recovery-
oriented services, peer supports, supported education, psychiatric
rehabilitation, and the avoidance of stigma. This research has led to
advances in theory development, measurement tools, treatment options,
and a variety of community-based supports. However, further research is
needed in these areas to maximize participation and community living
outcomes.
In addition, there is a strong need for research on understudied
aspects of participation and community living for individuals with
psychiatric disabilities. Two examples among many are emergency
preparedness and mental health disparities for traditionally
underserved populations (e.g., individuals from diverse racial, ethnic,
linguistic, and geographic backgrounds, and individuals with multiple
disabilities) (National Council on Disability, 2006; New Freedom
Commission on Mental Health, 2003; U.S. Public Health Service, Office
of the Surgeon General, 2001).
Finally, there is extensive documentation about the need to
accelerate the incorporation of research findings in mental health
service delivery so that individual lives can change as a result of the
research.
[[Page 50532]]
According to the Institute on Medicine report, Crossing the Quality
Chasm: A New Health System for the 21st Century, the time lag between
the discovery of effective medical treatments and the incorporation
into practice is 15 to 20 years. The President's New Freedom Commission
on Mental Health has called for a reduction in this delay as part of an
overall transformation of mental health care in America (Substance
Abuse and Mental Health Services Administration, 2005; New Freedom
Commission on Mental Health, 2003; Institute of Medicine, 2001).
References
Burt, M.R. (2001). What will it take to end homelessness? Urban
Institute Brief. Washington, DC: Urban Institute.
Institute of Medicine (2001). Crossing the Quality Chasm: A New
Health System for the 21st Century. Washington, DC: National Academy
Press.
Kaye, H.S. (2002). Employment and Social Participation Among People
With Mental Health Disabilities. In San Francisco, CA: National
Disability Statistics & Policy Forum.
McAlpine, D.D. and Warner, L. (2001). Barriers to Employment Among
Persons With Mental Illness: A Review of the Literature. New
Brunswick, NJ: Institute for Health.
National Council on Disability (July 7, 2006). The Needs of People
With Psychiatric Disabilities During and After Hurricanes Katrina
and Rita: Position Paper and Recommendations.
http://www.ncd.gov/newsroom/publications/2006/peopleneeds.htm.
New Freedom Commission on Mental Health, Achieving the Promise:
Transforming Mental Health Care in America. Final Report. DHHS Pub.
No. SMA-03-3832. Rockville, MD: 2003.
Substance Abuse and Mental Health Services Administration, U.S.
Department of Health and Human Services, Transforming Mental Health
Care in America. Federal Action Agenda: First Steps. DHHS Pub. No.
SMA-05-4060. Rockville, MD: 2005.
U.S. General Accounting Office (1996, April). SSA disability:
Program redesign necessary to encourage return to work. Report to
the Chairman, Special Committee on Aging and the U.S. Senate. GAO/
HEHS 96-62. Washington, DC: U.S. General Accounting Office.
United States Public Health Service Office of the Surgeon General
(2001). Mental Health: Culture, Race, and Ethnicity: A Supplement to
Mental Health: A Report of the Surgeon General. Rockville, MD:
Department of Health and Human Services, U.S. Public Health Service.
Proposed Priority
The Assistant Secretary for Special Education and Rehabilitative
Services proposes a priority for a Rehabilitation Research and Training
Center (RRTC) on Participation and Community Living for Individuals
with Psychiatric Disabilities. The RRTC must conduct rigorous research,
training, technical assistance, and dissemination activities that
contribute to improved participation and community living outcomes for
individuals with psychiatric disabilities. Under this priority, the
RRTC must be designed to contribute to the following outcomes:
(a) Improved individual and system capacity to maximize the
meaningful involvement of individuals with psychiatric disabilities in
community life. The RRTC must contribute to this outcome by:
(1) Advancing the knowledge base and application of theories,
measures, methods, interventions, or a combination of those activities
that facilitate participation and community living. This must include a
focus on at least three of the following areas: employment, housing,
education, health and mental health care, recreation, social
relationships, or other public and private sector activities related to
community living.
(2) Reducing disparities in service delivery and program
development by including a focus on one or more of the following
understudied areas: (i) Emergency preparedness for individuals with
psychiatric disabilities; (ii) individuals with psychiatric
disabilities from diverse racial, ethnic, linguistic, and geographic
backgrounds; or (iii) individuals with psychiatric disabilities who
have co-occurring sensory or physical disabilities.
(b) Increased incorporation of mental health research findings into
practice or policy. The RRTC must contribute to this outcome by
coordinating with appropriate NIDRR-funded knowledge translation
grantees to advance or add to their work in the following areas:
(1) Developing and implementing procedures to evaluate the
readiness of mental health research findings for translation into
practice.
(2) Collaborating with stakeholder groups to develop, evaluate, or
implement strategies to increase utilization of mental health research
findings.
(3) Conducting training, technical assistance, and dissemination
activities to facilitate knowledge translation in the context of mental
health research.
Priority 17--Multiple Sclerosis: Interventions To Maximize Health,
Well-Being, and Participation
Background
Approximately 400,000 Americans have multiple sclerosis (MS), and,
each week, about 200 more individuals in the United States are
diagnosed with MS (National Multiple Sclerosis Society, 2005).
Individuals with MS may have symptoms such as fatigue, motor weakness,
spasticity, poor balance, heat sensitivity, pain, cognitive impairment,
and mood disorders (Wynn, 2006; Mikol, 2006). The impact of the variety
of symptoms that an individual with MS may experience and the uncertain
prognosis of a given course of MS can impair an individual's routine
activities; vocational, social and interpersonal functioning; and
quality of life (Kalb, 2004). Treatment of MS may include: medication,
rehabilitation, integrative medicine, and other interventions (Yadav et
al., 2006). Surveys indicate that 50 to 75 percent of individuals with
MS have tried dietary changes, nutritional or herbal supplements, mind-
body therapies, and similar approaches to manage MS. Interestingly,
patients seem unlikely to discuss these types of strategies with their
neurologists (Yadav et al., 2006).
While some research has been conducted regarding the functional
outcomes of individuals with MS, there is a significant need for
further research in the areas of outcomes measurement and
rehabilitation interventions to maximize the health, well-being, and
participation of individuals with MS. Providers of care who treat
individuals with MS have cited their own need for clinical consultation
and continuing medical education (CME) about treatment of MS-associated
symptoms (Turner et al., 2006). Fatigue, depression, cognitive
impairment, and pain are among the most frequently cited areas for
consult and CME (Mikol, 2006). Future research should address the
frequent co-occurrence of these four symptoms as well as the impact of
central-nervous-system-active medications used to treat them (Oken et
al., 2006). For individuals with MS, there is a ``continued need for
effective therapeutic approaches to symptom management'' (Joy &
Johnston, 2001).
Recent research underscores the need for a continued focus on the
role of environmental and lifestyle factors affecting individuals with
MS, and also on the impact co-existing chronic health conditions have
on an aging population of individuals with MS (Marrie, 2006; Buchanan
et al., 2006; Snook et al., 2006). For example, treatment disparities
and variations in disease characteristics have been found when
comparing individuals with MS from rural versus urban environments
(Buchanan et al., 2006). There is also a strong relationship between
physical inactivity and risk for obesity among individuals with MS
(Snook et al.,
[[Page 50533]]
2006). In addition, a variety of autoimmune diseases ``are reported to
occur more frequently than expected in patients with MS'' (Marrie,
2006). These findings support the need for further research on outcomes
measurement and promotion of health and participation for individuals
with MS.
References
Buchanan, R.J., Schiffer, R., Stuifbergen, A., Zhu, L., Wang, S.,
Chakravorty, B.J., & Kim, M. (2006). Demographic and Disease
Characteristics of People with Multiple Sclerosis Living in Urban
and Rural Areas. International Journal of MS Care, February 2006,
vol. 8, Supplement 1.
Joy, J.E. & Johnston, R.B. (Eds.) (2001). Multiple Sclerosis:
Current Status and Strategies for the Future. Washington, D.C.:
National Academy Press.
Kalb, R.C. (2004). Multiple Sclerosis: The Questions You Have--The
Answers You Need, 3rd Edition. New York: Demos Medical Publishing.
Marrie, R.M. (2006). Multiple Sclerosis and Coexisting Health
Conditions. Multiple Sclerosis Quarterly Report, Winter 2006, vol.
25, no. 4.
Mikol, D. (2006). Management of Fatigue, Cognitive Dysfunction, and
Mood Disorders. International Journal of MS Care, February 2006,
vol. 8, Supplement 1.
National Multiple Sclerosis Society (2005). Multiple Sclerosis
Information Sourcebook. New York: National Multiple Sclerosis
Society. See: http://www.nationalmssociety.org/Sourcebook-Topic.asp.
Oken, B.S., Flegal, K., Zajdel, D., Kishiyama, S.S., Lovera, J.,
Bagert, B., & Bourdette, D.N. (2006). Cognition and Fatigue in
Multiple Sclerosis: Potential Effects of Medications With Central
Nervous System Activity. Journal of Rehabilitation Research &
Development, January/February 2006, vol. 43, no. 1.
Snook, E.N., Mojtahedi, M.C., Evans, E.M., McAuley, E., & Motl, R.W.
(2005). Physical Activity and Body Composition Among Ambulatory
Individuals with Multiple Sclerosis. International Journal of MS
Care, Winter 2005/2006, vol. 7, no. 4.
Turner, A.P., Martin, C., Williams, R.M., Goudreau, K., Bowen, J.D.,
Hatzakis, M., Whitham, R.H., Bourdette, D.N., Walker, L., &
Haselkorn, J.K. (2006). Exploring Educational Needs of Multiple
Sclerosis Care Providers: Results of a Care-Provider Survey. Journal
of Rehabilitation Research & Development, January/February 2006,
vol. 43, no. 1.
Wynn, D.R. (2006). Management of Physical Symptoms. International
Journal of MS Care, February 2006, vol. 8, Supplement 1.
Yadav, V., Shinto, L., Morris, C., Senders, A., Baldauf-Wagner, S.,
& Bourdette, D. (2006). Use and Self-Reported Benefit of
Complementary and Alternative Medicine Among Multiple Sclerosis.
International Journal of MS Care, Spring 2006, vol. 8, no. 1.
Proposed Priority
The Assistant Secretary for Special Education and Rehabilitative
Services proposes a priority for a Rehabilitation Research and Training
Center (RRTC) on Multiple Sclerosis: Interventions to Maximize Health,
Well-Being, and Participation. This RRTC must conduct rigorous
research, training, technical assistance, and dissemination activities
to improve rehabilitation outcome measures and rehabilitation
interventions that can be applied in clinical or community-based
settings.
In doing so, the RRTC must focus on no more than two of the
following dimensions: prevention or reduction of secondary conditions
(e.g., pain, fatigue, depression); improved mobility; emotional well-
being; and access to community-based health promotion services and
programs (e.g., fitness, recreation, and nutrition). Under this
priority, the RRTC must be designed to contribute to the following
outcomes:
(a) Improved outcome measures for use with persons with MS. The
RRTC must contribute to this outcome by identifying or developing and
testing methods and measures to assess health and rehabilitation
outcomes, participation in community-based programs, or both.
(b) Improved medical rehabilitation or community-based
rehabilitation interventions. The RRTC must contribute to this outcome
by identifying or developing and testing new rehabilitation
interventions for individuals with MS, replicating promising practices
or programs for individuals with MS, or both.
Priority 18--Aging With Physical Disability: Reducing Secondary
Conditions and Enhancing Health and Participation
Background
With medical and technological advancements, many individuals with
early onset physical disabilities, acquired at birth, in childhood or
young adulthood, are surviving long enough to experience the rewards
and challenges of aging (Campbell, Sheets & Strong, 1999). Determining
the size of this emerging segment of the disabled population has been
difficult due to the lack of sufficient population data on age of onset
and duration of disability (Kemp, 2005). The only national estimate
available to date comes from a secondary analysis of the 1990 U.S.
Census data, which suggests that there may be as many as 25,000,000
Americans who are aging with various long-term disabilities (McNeil,
1994).
As many researchers have documented, a primary challenge associated
with increased longevity among this population is an increased risk of
``secondary conditions.'' The term secondary conditions, or secondary
health conditions, is shorthand for the various types of medical and
functional problems that individuals with long-term physical
disabilities experience post-onset as they age (Kemp & Mosqueda, 2004).
Although there is widespread agreement that secondary conditions can be
debilitating, costly in terms of financial and social consequences, and
potentially fatal in some circumstances, how to define secondary
conditions remains an active debate within the disability community
(Wilber et al., 2002; Rimmer, 2005).
While a precise definition of secondary conditions is still
evolving, the emerging consensus is that secondary conditions often
increase the severity of an individual's disability (Brandt & Pope,
1997). As individuals with long-term physical disabilities age into
middle and later adulthood, there is an enormous physical and
psychological burden associated with having to manage various secondary
health conditions, in addition to managing the chronic health effects
related to the aging process generally (Rimmer, 2005). There is,
however, widespread agreement that certain secondary conditions are
preventable, and that learning how to prevent the onset or reduce the
severity and impact of these new or increased impairments, functional
limitations, and age-related health problems is vital to enhancing the
health and participation of individuals aging with long-term
disabilities (Simeonsson et al., 1999; Lollar, 2002; Wilber et al.,
2002).
To date there are no national estimates of the number of
individuals with long-term physical disabilities who are experiencing
one or more types of secondary conditions. Most of what is known about
the prevalence and consequences of secondary conditions for health and
participation comes from clinical studies of patients, a handful of
community-based studies and secondary analyses of population surveys,
and the evolving theoretical understanding of the general aging process
(Cristian, 2005; Kemp, 2005; Seekins et al., 1994; Campbell, Sheets, &
Strong, 1999; Wilber et al., 2002; Verbrugge & Yang, 2002; Kinne et
al., 2004).
Results of these studies underscore the importance of improving
treatment options to prevent or reduce the consequences of secondary
conditions. Exercise, lifestyle and behavioral
[[Page 50534]]
changes, and psychosocial and environmental factors are acknowledged as
mediators, or potential mediators, for the development of secondary
health conditions (Seekins et al., 1994; Wilber et al., 2002; Kemp,
2005; Rimmer, 2005). However, research on these factors has been
limited by the lack of measurement tools to characterize the types and
severity of secondary conditions experienced by individuals aging with
disabilities, and the lack of experimental and quasi-experimental
studies to test the effectiveness of various intervention strategies
(Wilber et al.; Rimmer, 2005).
References
Brandt, E.N. & Pope, A.M. (1997). Enabling America: Assessing the
Role of Rehabilitation Science and Engineering. Committee on
Disability Research, Institute of Medicine, National Academy of
Sciences. National Academies Press; pp. 25.
Campbell, M.L., Sheets, D.S., & Strong, P.S. (1999). Secondary
health conditions among middle-aged individuals with chronic
physical disabilities: Implications for ``unmet needs'' for
services. Assistive Technology, 11(2), 3-18. Cristian, A. (Ed.)
(2005). Aging with a Disability: An Issue of Physical Medicine and
Rehabilitation Clinics of North America, Volume 16. Oxford, UK:
Elsevier.
Kemp, B.J. (2005). What the rehabilitation professional and the
consumer need to know. In Adrian Cristian (ED), Aging with a
Disability: Physical Medicine and Rehabilitation Clinics of North
America, Volume 16: Pages 1-18. Oxford, UK: Elsevier.
Kemp, B.J. & Mosqueda, L. (Eds.) (2004). Aging with a Disability.
Baltimore: The Johns Hopkins University Press.
Kinne, S., Patrick, D.L., & Lochner, D.D. (2004). Prevalence of
secondary conditions among people with disabilities. American
Journal of Public Health. Vol 94(3): 443-445.
Lollar D. (2002). Public health and disability: emerging trends.
Public Health Report. Vol.117:131-136. McNeil, J. (1994). Americans
with Disabilities, Bureau of the Census, Statistical Brief, SB/94-1.
In LaPlante, M. Disability in the United States: Prevalence and
Causes, 1992.
Rimmer, J.L. (2005). Exercise and physical activity in persons aging
with a physical disability. In Adrian Cristian (Ed), Aging with a
Disability: Physical Medicine and Rehabilitation Clinics of North
America, Volume 16: Pages 41-56. Oxford, UK: Elsevier.
Seekins, T., Clay, J., & Ravesloot, C.H. (1994). A descriptive study
of secondary conditions reported by a population of adults with
physical disabilities served by 3 independent living centers in a
rural state. Journal of Rehabilitation, Vol. 60:47-51.
Simeonsson, R.J., Bailey, D.B., Scandlin, D., Huntington, G.S., &
Roth, M. (1999). Disability, health, secondary conditions and
quality of life: Emerging issues in public health. In: Simeonsson,
RJ, McDevitt, LN (Eds.) Issues in Disability and Health: The Role of
Secondary Conditions and Quality of Life. Chapel Hill: University of
North Carolina Press; 51-72.
Wilber, N., Mitra, M., Walker, D.K., Allen D., Meyers, A.R., &
Tupper, P. (2002). Disability as a public health issue: findings and
reflections from the Massachusetts Survey of Secondary Conditions.
Milbank Quarterly; Vol. 80:393-421.
Verbrugge, L.M. & Yang, L. (2002). Aging with Disability and
Disability with Aging. Journal of Disability Policy Studies; Vol.
12(4):253-267.
Proposed Priority
The Assistant Secretary for Special Education and Rehabilitative
Services proposes a priority for a Rehabilitation Research and Training
Center (RRTC) on Aging with Physical Disability: Reducing Secondary
Conditions and Enhancing Health and Participation. This RRTC must
conduct rigorous research, training, technical assistance, and
dissemination activities to improve rehabilitation outcome measures and
rehabilitation interventions that can be applied in clinical or
community-based settings and used by other researchers. The intended
outcome of the RRTC is to enhance the health and participation of
individuals aging with long-term physical disabilities in work and the
community by advancing knowledge about the identification, assessment,
treatment and improved management of the secondary conditions likely
experienced by this target population.
In addressing this priority, the RRTC must propose no more than
four synergistic, cross-disability research projects to address the
secondary conditions that are most relevant to the health, employment,
or community participation of individuals with disabilities. To ensure
the feasibility of the RRTC's proposed activities and increase the
likelihood of achieving planned outcomes, the RRTC must focus on no
more than three discrete impairment groups, and must limit
interventions strategies to no more than two of the following
modalities: exercise, health promotion, psychological adaptation, life
planning or self-management skills, and environmental or technological
supports. Under this priority, the RRTC must be designed to contribute
to the following outcomes:
(a) Enhanced understanding of the natural course of aging with
physical disability. The RRTC must contribute to this outcome by
documenting the life trajectories and average age of onset of the major
types of secondary conditions experienced by individuals living with
long-term physical disabilities, and examining the interrelationships
among different types of secondary conditions and the consequences of
variations in timing of onset for health and participation.
(b) Improved tools and measures for use with individuals aging with
long-term physical disabilities. The RRTC must contribute to this
outcome by identifying, developing or modifying, and testing new
measurement tools that improve the identification and assessment of the
major types of secondary conditions discussed in the literature, as
well as the outcomes of interventions designed to prevent or reduce
these conditions.
(c) Improved rehabilitation or community-based interventions that
enhance the health and participation in work and the community of
individuals aging with physical disabilities. The RRTC must contribute
to this outcome by identifying, developing, or modifying, and testing
new interventions that are effective in preventing the onset or
improving the management and reducing the impact of secondary
conditions, and replicating promising practices or programs that are
effective in preventing the onset or improving the management and
reducing the impact of secondary conditions, or both.
Priority 19--Disability Statistics and Demographics
Background
A 2003 report from the Interagency Committee on Disability Research
(ICDR) identified 67 Federal statutory definitions of the term
``disability.'' These definitions directly influence the collection of
national, State, administrative, and other data about individuals with
disabilities (Cherry Engineering Support Services (CSSI), Inc., 2003).
``Because surveys produce different types of information on disability,
they can provide additional perspectives on the sources and effects of
disabilities, but they can also cause confusion because of the
differences in the way disability is being measured'' (Government
Accountability Office, 2006). As a result of such confusion,
policymakers, service providers, individuals with disabilities, and
others may not be able to identify the best available statistics to
inform their efforts to enhance the well-being and participation of
individuals with disabilities.
An ongoing need exists to bridge the gap between producers and
users of disability statistics, particularly as the
[[Page 50535]]
population ages and injuries caused by such factors as war and
environmental changes lead to growing numbers of individuals with
disabilities (National Council on Disability (NCD), 2006). Policymakers
cite the need for information about the indirect and direct costs of
disability, unmet needs for services or technologies that facilitate
environmental access and enhance participation, and individuals with
disabilities living in institutional settings (Healthy People 2010,
2000; NCD, 2006).
Though there are a number of useful sources of disability data,
``controversy has been generated by variations in disability statistics
achieved by different researchers, using varied data collection
instruments, differing data sources and different data mining
techniques'' (NCD, 2006). Methodological research will improve the
quality and consistency of data and increase confidence in the research
findings (Stern, 2004; McMenamin, Miller, & Polivka, 2006). Improved
questionnaire design and innovative data collection strategies can
facilitate availability of valid and reliable data (NCD, 2006; Kroll et
al., in press). Research to evaluate best practices for conducting
surveys of and about individuals with disabilities will improve our
understanding of the needs of the population. Development of
methodologies to improve collections or analyses of data about
populations with low-incidence disabilities, or small demographic
subgroups of individuals with disabilities, would advance knowledge
about the population. A recent review indicates that ``there is a solid
base of theory on which to base research among low-incidence
populations'' but notes the lack of ``a large body of work in which
this theory has been applied to populations with disabilities'' (CESSI,
2005). For these reasons, NIDRR seeks to fund an RRTC that improves the
quality of disability statistics.
References
Cherry Engineering Support Services (CSSI), Inc. (2005). Research
Methods for Low-Incidence Populations. Prepared for the Interagency
Committee on Disability Research (ICDR). McLean, VA: CESSI.
Cherry Engineering Support Services (CSSI), Inc. (2003). Federal
Statutory Definitions of Disability. Prepared for the Interagency
Committee on Disability Research (ICDR). McLean, VA: CESSI. See:
http://www.icdr.us/documents/definitions.htm.
Government Accountability Office (GAO) (2006). Federal Information
Collection: A Reexamination of the Portfolio of Major Federal
Household Surveys is Needed, GAO-07-62. Washington, DC: GAO.
Kroll, T., Keer, D., Placek, P., Cyril, J., & Hendershot, G. (in
press). Towards Best Practices for Surveying People with
Disabilities. Volume 1. New York: Nova Publishers, Inc.
McMenamin, T., Miller, S., & Polivka, A. (2006). Discussion and
Presentation of the Disability Test Results from the Current
Population Survey. Washington, DC: Bureau of Labor Statistics. See:
http://econpapers.repec.org/paper/blswpaper/ec060080.htm.
National Council on Disability (2006). National Disability Policy: A
Progress Report, December 2004--December 2005. Washington, DC:
National Council on Disability. See:
http://www.ncd.gov/newsroom/publications/2006/progress--report.htm.
Stern, S. (2004). Counting People with Disabilities: How Survey
Methodology Influences Estimates in Census 2000 and the Census 2000
Supplementary Survey. Washington, DC: U.S. Census Bureau. See:
http://www.census.gov/hhes/www/disability/finalstern.pdf.
U.S. Department of Health and Human Services (2000). Healthy People
2010. 2nd ed. With Understanding and Improving Health and Objectives
for Improving Health. 2 vols. Washington, DC: U.S. Government
Printing Office.
Proposed Priority
The Assistant Secretary for Special Education and Rehabilitative
Services proposes a priority for a Rehabilitation Research and Training
Center (RRTC) on Disability Statistics and Demographics. This RRTC must
conduct rigorous research, knowledge translation, training,
dissemination, and technical assistance that advance the use of
rigorous disability statistics and demographics to inform disability
policy and service provision. Under this priority, the RRTC must be
designed to contribute to the following outcomes:
(a) Rigorous and timely demographic research to inform the
development of disability policy and programs. The RRTC must contribute
to this outcome by: (1) Producing meta-analyses of national, State, and
administrative data that address critical program and service needs;
and (2) providing statistical consultation, including specialized
analyses, to facilitate the use of survey and administrative data by
policymakers and others.
(b) Improved disability data and statistics. The RRTC must conduct
research about methodologies that advance the practice for (1)
Conducting surveys of individuals with disabilities, including
individuals with low-prevalence disabilities; (2) analyzing data about
low-incidence populations of individuals with disabilities; and (3)
other issues related to survey or administrative data.
(c) Effective use of disability statistics and demographic
information. The RRTC must contribute to this outcome by: (1) Serving
as a resource on disability statistics and demographics for Federal and
other government agencies, policymakers, consumers, advocates,
researchers, and others; and (2) transferring research findings to
enhance planning, policymaking, program administration, and delivery of
services to individuals with disabilities.
Priorities 20 and 21--Health and Function Across the Lifespan of
Individuals With Intellectual and Developmental Disabilities (Priority
20) and Participation and Community Living for Individuals With
Intellectual and Developmental Disabilities (Priority 21)
Background
For purposes of priorities 20 and 21, individuals with
intellectual, developmental, mental, and cognitive disabilities,
including individuals with cerebral palsy, Downs syndrome, autism, and
related conditions, will be referred to as persons with intellectual
disabilities or developmental disabilities (ID/DD). Individuals are
considered to have an intellectual disability (ID) when their
intellectual functioning level (IQ) is below 70-75; they have
significant limitations in conceptual, social, and practical adaptive
skills such as communication, self-care, home living, social skills,
leisure, health and safety, self-direction, functional academics
(reading, writing, basic math), and work; and the disability originated
before the age of 18. Developmental disabilities (DD) are defined as
severe, chronic disabilities that first appear before age 22, are
likely to continue indefinitely, and cause substantial limitations in
three or more of the following areas: Self-care, language, learning,
mobility, self-direction, and capacity for independent living. These
definitions of ID and DD, however, may have limitations when applied in
research or in the administration of public assistance programs because
of diagnostic ambiguities, implementation and measurement problems, or
the temporary nature of certain context-specific disabilities (Larson
et al., 2001).
Individuals with ID/DD constitute a diverse group of underserved,
underemployed or unemployed, and marginalized individuals. While
estimates about the size and composition of this population in the
United States range from 1.6 percent to nearly 3 percent of the
population (between 4.5 million and 8 million), depending on the source
of data and the types of diagnoses used, clear patterns
[[Page 50536]]
of disadvantage are apparent in this population (Lakin & Turnbull,
2005; National Institute of Child Health and Human Development, 2002;
U.S. Department of Health and Human Services, Office of the Assistant
Secretary for Planning and Evaluation, 2006).
According to a 2004 report issued by the President's Committee for
People with Intellectual Disabilities (2004), around 90 percent of
adults with ID/DD were not employed. Among those individuals with ID/DD
who were employed, over 365,000 attended sheltered workshops or were in
day programs or prevocational services. Levels of educational
attainment are quite low for individuals with ID/DD. According to the
2004 report, 26 percent of youth with ID/DD dropped out of school, and
fewer than 15 percent participated in postsecondary education. Levels
of income and wealth are also low among individuals with ID/DD.
Supplemental Security Income (SSI) or Social Security Disability
Insurance (SSDI) were a major source of income for individuals with ID/
DD (in December 2001, there were almost 1.1 million adults and children
receiving SSI payments based on ID/DD; there were almost 600,000
receiving SSDI benefits). Over 700,000 individuals with ID/DD lived
with parents aged 60 or older. Less than one percent of individuals
with ID/DD owned their own home (President's Committee for People with
Intellectual Disabilities, 2004).
These statistics provide a small glimpse into the everyday life
experiences of individuals with ID/DD and their families and
caregivers. Depending on the severity of their disability, individuals
with ID/DD need assistance in most, if not all, activities of daily
living (e.g., walking, dressing, bathing) and instrumental activities
of daily living (e.g., shopping or managing money). Such assistance is
time consuming and costly, particularly if skilled personal assistance
services and professional rehabilitation services are needed.
Besides needing significant amounts of care, many individuals with
ID/DD are at an increased risk of being isolated from the community,
particularly if they have been placed under institutional supervision
or care. Limited educational attainment and job skills are key barriers
to inclusion in communal activities. As a result, many individuals with
ID/DD have difficulties developing independent living and social
skills. They remain dependent on family, friends, and personal
caregivers. Where such supports are not available, they must resort to
institutional care.
Individuals with ID/DD have been found to suffer from a wide range
of illnesses and impairments (National Institute of Child Health and
Human Development, 2002). The onset of many conditions is at birth or
in infancy (for example, cerebral palsy). Moreover, many other
conditions, such as obesity, diabetes, or Alzheimer's disease occur
earlier in adulthood for individuals with ID/DD than most individuals
in the general population. As a result, individuals with ID/DD have
greater needs for health care services than members of the general
population. To obtain the full benefits of these services, the
individuals must have access to skilled staff at service facilities who
are informed about, and equipped to respond to, the special needs of
individuals with ID/DD. If skilled staff are not available, consumers
and providers may consider the help of intermediaries, direct support
providers, or other social service providers specializing in the care
of individuals with ID/DD.
For these reasons, NIDRR seeks to fund two RRTCs designed to
increase the levels of health, function, and community living/
participation of individuals with ID/DD by developing and applying
scientifically validated procedures, treatments, and interventions. The
goal of these procedures, treatments, and interventions is to create
measurable benefits or outcomes for individuals with ID/DD and their
families and caregivers.
References
Lakin, K. & Turnbull, A., Eds. (2005). National Goals and Research
for People With Intellectual and Developmental Disabilities.
Washington, DC: American Association on Mental Retardation.
Larson, S.A., Lakin, C.K., Anderson, Lynda, K., Nohon, L., Jeoung,
H., & Anderson, D. (2001). Prevalence of Mental Retardation and
Developmental Disabilities: Estimates from the 1994/1995 National
Health Interview Survey Disability Supplements. American Journal on
Mental Retardation 106(3):231-252.
National Institute of Child Health and Human Development (2002).
Closing the Gap: A National Blueprint to Improve the Health of
Persons with Mental Retardation. Report of the Surgeon General's
Conference on Health Disparities and Mental Retardation. Washington,
DC.
President's Committee for People with Intellectual Disabilities
(2004). A Charge We Have To Keep. A Road Map to Personal and
Economic Freedom for People with Intellectual Disabilities in the
21st Century. Washington, DC: U.S. Department of Health and Human
Services, Administration for Children and Families.
U.S. Department of Health and Human Services, Office of the
Assistant Secretary for Planning and Evaluation (2006). The Supply
of Direct Support Professionals Serving Individuals with
Intellectual Disabilities and Other Developmental Disabilities:
Report to Congress. Washington, DC.
Proposed Priority 20--Health and Function Across the Lifespan of
Individuals With Intellectual and Developmental Disabilities
The Assistant Secretary for Special Education and Rehabilitative
Services proposes a priority for a Rehabilitation Research and Training
Center (RRTC) on Health and Function Across the Lifespan of Individuals
with Intellectual and Developmental Disabilities (ID/DD). This RRTC
must focus on rigorous research, training, technical assistance, and
dissemination of strategies and interventions that improve the health
and function of individuals with ID/DD, and access to community-based
health and social services by individuals with ID/DD. The research
conducted by this RRTC also must focus on improving the health and
function of individuals with ID/DD and on promoting family and
caregiver supports that enable persons with ID/DD to receive long-term
care.
When applying for a grant under this priority, an applicant must
identify, in its application, the subjects of interest from the diverse
population of individuals with ID/DD to be served by the proposed
research and describe how the proposed research will benefit this
group.
Under this priority, the RRTC must be designed to contribute to the
following outcomes:
(a) Conceptually sound theories and methodologies for research on
community-based rehabilitation and health and social service provision,
including research on long-term care or care provided by family members
to individuals with ID/DD. The RRTC must contribute to this outcome by
investigating existing theories that may help organize or frame
research on ID/DD, including theories from fields such as long-term
care, or frameworks related to delivery of rehabilitation or health
services in the community.
(b) Improved instruments and measures that help to evaluate the
suitability and quality of personal assistance services, and the
effectiveness and efficiency of community-based health and social
services for individuals with ID/DD. The RRTC must contribute to this
outcome by assessing current measures and instruments, reporting on
their validity
[[Page 50537]]
and reliability, and then developing and testing improved measures as
needed.
(c) Improved rehabilitation or community-based interventions that
demonstrate measurable reductions in barriers to access and utilization
of community-based services or community-based interventions that
otherwise contribute to improved health and function of individuals
with ID/DD. The RRTC must contribute to this outcome by identifying and
testing potential interventions and providing a thorough assessment of
the basis on which these interventions were selected, including any
preliminary evidence of their usefulness and relevance to individuals
with ID/DD and their families.
Proposed Priority 21--Participation and Community Living for
Individuals With Intellectual and Developmental Disabilities
The Assistant Secretary for Special Education and Rehabilitative
Services proposes a priority for a Rehabilitation Research and Training
Center (RRTC) for Participation and Community Living for Individuals
with Intellectual and Developmental Disabilities (ID/DD). The RRTC must
focus on rigorous research, training, technical assistance, and
dissemination to enhance inclusion and self-determination of
individuals with ID/DD. This RRTC also must focus on developing
interventions that support self-determination, informed choice,
consumer control, family involvement, and participation and community
living of individuals with ID/DD.
When applying for a grant under this priority, an applicant must
identify, in its application, the subjects of interest from the diverse
population of individuals with ID/DD to be served by the proposed
research and describe how the proposed research will benefit this
group.
Under this priority, the RRTC must be designed to contribute to the
following outcomes:
(a) Improved concepts and theories of societal participation and
community living, and self-determination to guide the study of needs
and abilities of individuals with ID/DD. The RRTC must contribute to
this outcome by investigating existing theories of societal
participation, community living, and self-determination to frame
research on these topics for individuals with ID/DD.
(b) Improved instruments and measures of participation and
community living to assess the type, frequency, and quality of
activities that individuals with ID/DD wish to engage in, or are able
to engage in outside the home or residential facility. The RRTC must
contribute to this outcome by assessing current measures and
instruments used to determine outcomes in the areas of access to
community facilities, social participation, self advocacy, employment
choice, and housing selection by individuals with ID/DD, reporting on
the validity and reliability of these measures, and then developing and
testing improved measures as needed.
(c) Improved rehabilitation or community-based interventions that
demonstrate a measurable impact in areas such as access to communal
facilities and events, social participation and interaction with
members of the community, self-advocacy, employment opportunities, and
housing choices. The RRTC must contribute to this outcome by
identifying and testing potential interventions for individuals with
ID/DD, providing a thorough assessment of the basis on which these
interventions were selected, including any preliminary evidence of
their usefulness and relevance to individuals with ID/DD and their
families.
Rehabilitation Engineering Research Centers Program General
Requirements of Rehabilitation Engineering Research Centers (RERCs)
RERCs carry out research or demonstration activities in support of
the Rehabilitation Act of 1973, as amended, by--
Developing and disseminating innovative methods of
applying advanced technology, scientific achievement, and psychological
and social knowledge to: (a) Solve rehabilitation problems and remove
environmental barriers; and (b) study and evaluate new or emerging
technologies, products, or environments and their effectiveness and
benefits; or
Demonstrating and disseminating: (a) Innovative models for
the delivery of cost-effective rehabilitation technology services to
rural and urban areas; and (b) other scientific research to assist in
meeting the employment and independent living needs of individuals with
severe disabilities; and
Facilitating service delivery systems change through: (a)
The development, evaluation, and dissemination of consumer-responsive
and individual and family-centered innovative models for the delivery
to both rural and urban areas of innovative cost-effective
rehabilitation technology services; and (b) other scientific research
to assist in meeting the employment and independence needs of
individuals with severe disabilities.
Each RERC must be operated by or in collaboration with one or more
institutions of higher education or one or more nonprofit
organizations.
Each RERC must provide training opportunities, in conjunction with
institutions of higher education and nonprofit organizations, to assist
individuals, including individuals with disabilities, to become
rehabilitation technology researchers and practitioners.
Additional information on the RERC program can be found at:
http://www.ed.gov/rschstat/research/pubs/index.html.
Priorities 22, 23, 24, 25, 26, and 27--Rehabilitation Engineering
Research Centers (RERCs) for Hearing Enhancement (Priority 22),
Accessible Public Transportation (Priority 23), Prosthetics and
Orthotics (Priority 24), Communication Enhancement (Priority 25),
Universal Interface and Information Technology Access (Priority 26),
and Wheeled Mobility (Priority 27)
Background
Individuals with disabilities regularly use products that have been
developed as the result of rehabilitation and biomedical research in
order to achieve and maintain maximum physical function, live
independently, study and learn, and attain gainful employment.
Rehabilitation engineering research encompasses research on assistive
technology, technology at the systems level (e.g., the built
environment, transportation), and technology that allows individuals to
interface with technology at the systems or environmental levels.
Advancements in basic biomedical science and technology have
resulted in new opportunities to enhance further the lives of
individuals with disabilities. Specifically, recent advances in
biomaterials research, composite technologies, information and
telecommunication technologies, nanotechnologies, micro electro
mechanical systems (MEMS), sensor technologies, and the neurosciences
provide a wealth of opportunities for individuals with disabilities and
could be incorporated into research focused on disability and
rehabilitation.
Through the following proposed priorities, NIDRR intends to fund
RERCs that advance rehabilitation engineering research in the following
priority research areas: Hearing Enhancement, Accessible Public
Transportation, Prosthetics and Orthotics, Communication Enhancement,
Universal Interface and Information
[[Page 50538]]
Technology Access, and Wheeled Mobility.
Priority 22--Hearing Enhancement
Approximately 28.6 million Americans have an auditory disorder. In
the United States, an estimated 1 to 6 in 1,000 newborns are born
profoundly deaf, and another 2 to 3 out of 1,000 babies are born with
partial hearing loss, making hearing loss the number one birth defect
in America (Kochkin, 2001; Kemper & Downs, 2000; Cunningham & Cox,
2003).
Despite advances in hearing assistive technologies such as digital
hearing aids, cochlear implants, induction loop (IL), frequency
modulation (FM) and infrared (IR) assistive listening systems, and
video relay, many challenges and opportunities for future research and
development exist (Stika, Ross, & Cuevas, 2002; Schow et al., 1993).
For example, there is a need for new fitting methods for hearing aids
and cochlear implants that adaptively adjust signal processing
parameters such as compression threshold, compression ratio, gain, and
frequency to maximize performance goals for an individual, both in the
clinic and in the field (Stika, Ross & Cuevas, 2002; Schow, Balsara,
Smedley & Whitcomb, 1993). In addition, there is a need to explore how
rehabilitation or training can be provided so that individual users of
hearing enhancement technologies can readily adopt new technologies and
adapt to the new stimulation and information being received (Schow et
al., 1993).
Accordingly, NIDRR seeks to fund an RERC that researches and
develops innovative models of aural rehabilitation tools, services, and
training, in order to improve assessment and fitting of hearing
enhancement technologies and to increase the availability, knowledge,
and use of hearing enhancement devices and services.
References
Cunningham, M. & Cox, E.O. (2003). Hearing assessment in infants and
children: Recommendations beyond neonatal screening. Pediatrics,
111(2): 436-440.
Kemper, A.R. & Downs, S.M. (2000). A cost-effectiveness analysis of
newborn hearing screening strategies. Archives of Pediatric and
Adolescent Medicine, 154(5): 484-488.
Kochkin, S. (2001). MarkeTrak VI: The VA and direct mail sales spark
growth in hearing aid market. The Hearing Review, 8(12): 16-24, 63-
65.
Schow, R., Balsara, N., Smedley, T., & Whitcomb, C. (1993). Aural
rehabilitation by ASHA audiologists: 1980-1990, American Journal of
Audiology, 2(3): 28-37.
Stika, C.J., Ross, M., & Cuevas, C. (2002). Hearing Aid Services and
Satisfaction: The Consumer Viewpoint, Hearing Loss: the Journal of
Self Help for Hard of Hearing People, 23(3): 25-31.
Priority 23--Accessible Public Transportation
Inaccessible transportation is a major barrier to independent
living and limits the ability of individuals with disabilities to
participate fully in their communities. One-third of individuals with
disabilities report that inadequate transportation is a significant
problem, and they are twice as likely to have inadequate transportation
than individuals without disabilities (N.O.D./Harris Survey, 2004).
Addressing the problems of accessibility of public transportation may
help to provide the same degree of convenience, connection, and safety
the general public enjoys when traveling via plane, train, or bus.
Points of entry and exit, public rights-of-way, communications, and
bus and rail stations and stops are just a few of the areas posing
transportation accessibility problems for individuals with
disabilities. The physical dimensions and space limitations of the
transport vehicle may prohibit easy entry, transfer to vehicle seats,
or use of the services and facilities available on a plane, train, or
bus. In addition, costs, physical ability, and perceptions of safety
are all considered barriers to public transportation (Peck & Hess,
2006).
Accordingly, NIDRR seeks to fund an RERC on Accessible Public
Transportation to address the need for improvements in the
accessibility of public transportation, provide safe and dignified
travel for individuals with disabilities, and increase community
participation by individuals with disabilities. The focus of this RERC
is on travel via air, rail, and bus.
References
N.O.D./Harris Survey of Americans with Disabilities (2004). Harris
Interactive, 111 Fifth Avenue, New York, NY 10003.
Peck, M. & Hess D. (2006). Barriers to Using Public Transit among
Diverse Older Adults: Implications for Social Work.
http://sswr.confex.com/sswr/2007/techprogram/P7047.HTM
Priority 24--Prosthetics and Orthotics
In the United States, it is estimated that there are 1.2 to 1.9
million individuals living with limb loss (Adams, Hendershot, & Marano,
1999). In addition, it is estimated that 75 percent of individuals with
limb loss use a prosthetic device (Nielsen, 2002). The majority of
amputations are generally the result of peripheral vascular disease.
Cancer, congenital limb loss, and trauma are the other major causes of
amputation. It is difficult to accurately estimate orthotic use in the
United States, because orthotics are used by many different pathology
populations (stroke, spinal cord injury, cerebral palsy, orthopedic
impairment) and orthoses are not often used on a permanent basis.
Increased knowledge and understanding about prosthetics and
orthotics, and a greater emphasis on objective measures, such as
performance, efficacy, and energy expenditures, that inform clinical
practice should lead to the development of new concepts and devices to
improve the quality, cost-effectiveness, and delivery of prosthetic and
orthotic fittings.
Accordingly, NIDRR seeks to fund an RERC that researches and
develops innovative prosthetic and orthotic technologies and designs to
enhance the ability of individuals with limb loss and impaired limb
function to perform activities of daily living, to have expanded
employment options, to participate in sports and leisure activities,
and to improve their health and participation outcomes.
References
Adams, P.F., Hendershot, G.E., & Marano, M.A. (1999). Current
estimates from the National Health Interview Survey, 1996. National
Center for Health Statistics. Vital Health Stat 10(200).
Nielsen, C. (2002). Issues Affecting The Future Demand for
Orthotists and Prosthetists: Update 2002. A study updated for the
National Commission on Orthotic and Prosthetic Education, May 2002.
Priority 25--Communication Enhancement
``Approximately 1.3 percent of all individuals [in the United
States] (i.e., more than 3.5 million Americans) have such significant
communication disabilities that they cannot rely on their natural
speech to meet their daily communication needs.'' (Beukelman, 2005).
For these individuals, augmentative and alternative communication (AAC)
strategies would facilitate participation and independence.
The number of individuals who may benefit from AAC will continue to
grow as the American population ages and the associated prevalence of
acquired communication disorders increases. Also, improvements in
medical practices and technologies have resulted in increased survival
rates among at risk infants and children, which, in turn, has
[[Page 50539]]
led to an increase in the number of individuals with moderate to severe
disabilities (Hack et al., 2005). In addition, the prevalence of autism
spectrum disorders (ASD) has increased and more individuals with ASD
and their caregivers are actively seeking, and expecting to find,
intervention services that include AAC (Blackstone, 2005).
Accordingly, NIDRR seeks to fund an RERC that enhances
communication for individuals with communication disabilities, promotes
greater participation of individuals with communication disabilities in
employment and education, increases independence for these individuals,
and researches and develops innovative technologies and techniques to
improve the state of the science and usability of AAC technology.
References
Beukelman, D.R. & Mirenda, P. (2005). Augmentative and Alternative
Communication: Supporting children and adults with complex
communication needs. (3rd edition). Baltimore: Paul H. Brookes
Publishing, p.3.
Blackstone, S.W. (2003). Overview and Update. Augmentative
Communication News. 15:4, 2-3.
Hack, M., Taylor, H., Drotar, D., Schluchter, M., Cartar, L.,
Andreias, L., Wilson-Costello, D., & Klein, N. (2005). Chronic
Conditions, Functional Limitations, and Special Health Care Needs of
School-Aged Children Born with Extra Low Birth Weight in the 1990's.
Journal of the American Medical Association (JAMA), 294(3), 318-325.
Priority 26--Universal Interface and Information Technology Access
Information technologies have the potential to provide or increase
access to professional, educational, social, and economic resources
among individuals with disabilities (Gorski & Clark, 2002).
Unfortunately, large discrepancies in the rates of use of information
technologies exist between individuals with and without disabilities.
According to data collected by the Bureau of Labor Statistics and the
U.S. Census, 57.6 percent and 54.4 percent of individuals without
disabilities use a computer at home and access the Internet at home,
respectively. These same data suggest that only 30.2 percent and 26.4
percent of individuals with disabilities use a computer at home and
access the Internet at home, respectively. In addition, while 63.6
percent of individuals without disabilities access the Internet at some
location, only 30.8 percent of individuals with disabilities do so
(Dobransky & Hargittai, 2006).
Information technology access development efforts are utilizing V2
Information Technology Access Interface standards to build and test new
universally designed interfaces that accommodate individuals with and
without disabilities (International Committee for Information
Technology Standards, 2006). These ``smart devices'' would
automatically offer the user the appropriate interface and adapt to the
way in which the user interacts with it (Horn & West, 2005).
Despite the promise of a universally designed information
technology (IT) interface or device, most currently existing IT devices
still need to be retrofitted with customized input and output
interfaces so individuals with disabilities can use them. Further
research on the effectiveness of existing alternative input and output
interfaces and the design specifications necessary to construct
universally designed IT interfaces and devices of the future is needed.
Accordingly, NIDRR seeks to fund an RERC that enhances the
effectiveness of currently available input and output IT interfaces and
devices used by individuals with varying disabilities to facilitate
community participation and independent living.
References
Dobransky, K. & Hargittai, E. (2006). The disability divide in
Internet access and use. Information, Communication & Society. 9(3),
313-334.
Gorski, P. & Clark, C. (2002). Multicultural Education and the
Digital Divide: Focus on Disability. Multicultural Perspectives.
4(4), 28-36.
Horn, P. & West, F. (2005). Introduction. IBM systems Journal.
44(3), 1-2.
International Committee for Information Technology Standards (2006).
V2--Information Technology Access Interfaces. Gaithersburg, MD:
National Institute of Standards and Technology. See:
http://v2.incits.org/.
Priority 27--Wheeled Mobility
Among the United States population of individuals aged 15 years and
older, 2.7 million individuals use a wheelchair or similar device (2002
SIPP data cited in Steinmetz, 2006). As more individuals with
disabilities advance in age and as more aging individuals acquire
disabilities, the number of wheeled-mobility device users will increase
(White House Conference on Aging, 2005). Addressing the needs of this
diverse population requires engineering and related fields to develop
new solutions to existing problems and provide innovation and
advancement in wheeled mobility.
Despite advances in knowledge in wheelchair propulsion technique,
secondary injury prevention, wheelchair-user interface, and wheelchair
skills training, many challenges and opportunities for future research
and development exist. For example, over-use injuries resulting from
long-term wheelchair use are still a major problem (Arthanat & Strobel,
2006; Van der Woude, de Groot, & Janssen, 2006; Van der Woude, Janssen,
& Vegger, 2005). In addition, there is a need for more information on
the ergonomics of wheelchair and scooter design and use within and
across different environments (e.g., work, home, school, and outdoors)
(Arthanat & Strobel, 2006; Van der Woude, de Groot, & Janssen, 2006).
Advances in wheelchair technology may provide users with greater
functional potential, including increases in participation and
activity, and decreases in secondary injuries, such as pressure sores
and repetitive strain injuries. Accordingly, NIDRR seeks to fund an
RERC that improves understanding of the ergonomics, design,
development, testing, and use of wheelchairs and scooters within and
across different environments.
References
Arthanat, S. & Strobel, W. (2006). Wheelchair ergonomics:
Implications for vocational participation. Journal of Vocational
Rehabilitation, 24, 97-109.
Steinmetz, E. (2006). Current Population Reports: Americans with
Disabilities 2002. Washington, DC: U.S. Department of Commerce,
Economics and Statistics Administration, U.S. Census Bureau. See:
http://www.census.gov/prod/2006pubs/p70-107.pdf.
Van der Woude, L.H., de Groot, S., & Janssen, T.W.J. (2006). Manual
wheelchairs: Research and innovation in rehabilitation, sports,
daily life and health. Medical Engineering & Physics, 28(9), 905-
915.
Van der Woude, L.H., Janssen, T.W.J., & Vegger, D.J. (2005). 3rd
International Congress ``Restoration of wheeled mobility in SCI
rehabilitation: State of the art III'': its background. Technology
and Disability, 17, 55-61.
White House Conference on Aging (2005). Final Report to the
President and Congress: The Booming Dynamics of Aging: From
awareness to action. See: http://www.whcoa.gov/about/about.asp#report.
Proposed Priorities
The Assistant Secretary for Special Education and Rehabilitative
Services proposes the following six priorities for the establishment of
(a) An RERC for Hearing Enhancement (priority 22); (b) an RERC for
Accessible Public Transportation (priority 23); (c) an RERC for
Prosthetics and Orthotics (priority 24); (d) an RERC for Communication
Enhancement (priority 25); (e) an RERC for Universal Interface and
Information Technology Access (priority 26); and (f)
[[Page 50540]]
an RERC for Wheeled Mobility (priority 27). Within its designated
priority research area, each RERC will focus on innovative
technological solutions, new knowledge, and concepts that will improve
the lives of individuals with disabilities.
(a) RERC for Hearing Enhancement (Priority 22). Under this
priority, the RERC must research and develop methods, systems, and
technologies that will assist hearing professionals with the process of
matching hearing enhancement assistive technologies to individuals with
hearing loss and associated conditions such as tinnitus. This includes
improving the compatibility of hearing enhancement technologies with
various environments such as school, work, recreation, and social
settings.
(b) RERC for Accessible Public Transportation (Priority 23). Under
this priority, the RERC must research and develop methods, systems, and
devices that will promote and enhance the ability of individuals with
disabilities to safely, comfortably, and efficiently identify
destination information, board and disembark, and use services and
facilities on various types of public transportation systems such as
buses, passenger trains, and airplanes. This RERC must emphasize the
principles of universal design in its product research and development.
(c) RERC for Prosthetics and Orthotics (Priority 24). Under this
priority, the RERC must increase the understanding of the scientific
and engineering principles pertaining to human locomotion, reaching,
grasping, and manipulation, and incorporate those principles into the
design and fitting of prosthetic and orthotic devices.
(d) RERC for Communication Enhancement (Priority 25). Under this
priority, the RERC must research and develop augmentative and
alternative communication technologies and strategies that will enhance
the communicative capacity of individuals of all ages with significant
communication disorders across environments (i.e., education,
employment, recreation, social).
(e) RERC for Universal Interface and Information Technology Access
(Priority 26). Under this priority, the RERC must research and develop
innovative technological solutions for, and promote universal access
to, current and emerging information technologies and technology
interfaces that promote a seamless integration of the multiple
technologies used by individuals with disabilities in the home, the
community, and the workplace. This RERC must work collaboratively with
the RERC on Telecommunication Access, the RERC on Mobile Wireless
Technologies, and the NIDRR-funded Information Technology Technical
Assistance and Training Center.
(f) RERC for Wheeled Mobility (Priority 27). Under this priority,
the RERC must research and develop innovative technologies and
strategies that will improve the current state of the science, design
standards, and usability of wheeled mobility devices and wheelchair
seating systems.
Under each priority, the RERC must be designed to contribute to the
following outcomes:
(1) Increased technical and scientific knowledge base relevant to
its designated priority research area. The RERC must contribute to this
outcome by conducting high-quality, rigorous research and development
projects.
(2) Innovative technologies, products, environments, performance
guidelines, and monitoring and assessment tools as applicable to its
designated priority research area. The RERC must contribute to this
outcome through the development and testing of these innovations.
(3) Improved research capacity in its designated priority research
area. The RERC must contribute to this outcome by collaborating with
the relevant industry, professional associations, and institutions of
higher education.
(4) Improved focus on cutting edge developments in technologies
within its designated priority research area. The RERC must contribute
to this outcome by identifying and communicating with NIDRR and the
field regarding trends and evolving product concepts related to its
designated priority research area.
(5) Increased impact of research in the designated priority
research area. The RERC must contribute to this outcome by providing
technical assistance to public and private organizations, individuals
with disabilities, and employers on policies, guidelines, and standards
related to its designated priority research area.
(6) Increased transfer of RERC-developed technologies to the
marketplace. The RERC must contribute to this outcome by developing and
implementing a plan for ensuring that all technologies developed by the
RERC are made available to the public. The technology transfer plan
must be developed in the first year of the project period in
consultation with the NIDRR-funded Disability Rehabilitation Research
Project, Center on Knowledge Translation for Technology Transfer.
In addition, under each priority, the RERC must--
Have the capability to design, build, and test prototype
devices and assist in the transfer of successful solutions to relevant
production and service delivery settings;
Evaluate the efficacy and safety of its new products,
instrumentation, or assistive devices;
Provide as part of its proposal, and then implement, a
plan that describes how it will include, as appropriate, individuals
with disabilities or their representatives in all phases of its
activities, including research, development, training, dissemination,
and evaluation;
Provide as part of its proposal, and then implement, in
consultation with the NIDRR-funded National Center for the
Dissemination of Disability Research (NCDDR), a plan to disseminate its
research results to individuals with disabilities, their
representatives, disability organizations, service providers,
professional journals, manufacturers, and other interested parties;
Conduct a state-of-the-science conference on its
designated priority research area in the fourth year of the project
period, and publish a comprehensive report on the final outcomes of the
conference in the fifth year of the project period; and
Coordinate research projects of mutual interest with
relevant NIDRR-funded projects, as identified through consultation with
the NIDRR project officer.
Executive Order 12866
This notice of proposed priorities has been reviewed in accordance
with Executive Order 12866. Under the terms of the order, we have
assessed the potential costs and benefits of this regulatory action.
The potential costs associated with this notice of proposed
priorities are those resulting from statutory requirements and those we
have determined as necessary for administering this program effectively
and efficiently.
In assessing the potential costs and benefits--both quantitative
and qualitative--of this notice of proposed priorities, we have
determined that the benefits of the proposed priorities justify the
costs.
Summary of Potential Costs and Benefits
The benefits of the Disability and Rehabilitation Research Projects
and Centers Programs have been well established over the years in that
similar projects have been completed successfully. These proposed
priorities
[[Page 50541]]
will generate new knowledge and technologies through research,
development, dissemination, utilization, and technical assistance
projects.
Another benefit of these proposed priorities is that the
establishment of new DRRPs, new RRTCs, and new RERCs will support the
President's NFI and will improve the lives of individuals with
disabilities. The new DRRPs, RRTCs, and RERCs will generate,
disseminate, and promote the use of new information that will improve
the options for individuals with disabilities to perform regular
activities in the community.
Intergovernmental Review
This program is not subject to Executive Order 12372 and the
regulations in 34 part 79.
Applicable Program Regulations: 34 CFR part 350.
Electronic Access to This Document
You may view 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.
(Catalog of Federal Domestic Assistance Numbers 84.133A Disability
Rehabilitation Research Projects, 84.133B Rehabilitation Research
and Training Centers and 84.133E Rehabilitation Engineering Research
Centers Program)
Program Authority: 29 U.S.C. 762(g), 764(a), 764(b)(2), and
764(b)(3).
Dated: August 27, 2007.
William W. Knudsen,
Acting Deputy Assistant Secretary for Special Education and
Rehabilitative Services.
[FR Doc. E7-17199 Filed 8-30-07; 8:45 am]
BILLING CODE 4000-01-P