[Federal Register: June 29, 1998 (Volume 63, Number 124)]
[Notices]
[Page 35475-35480]
From the Federal Register Online via GPO Access [wais.access.gpo.gov]
[DOCID:fr29jn98-136]
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_______________________________________________________________________
Part V
Department of Education
_______________________________________________________________________
National Institute on Disability and Rehabilitation Research; Final
Funding Priorities and Inviting Applications for New Rehabilitation
Research Training Centers for Fiscal Years 1998-1999; Notice
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DEPARTMENT OF EDUCATION
National Institute on Disability and Rehabilitation Research
AGENCY: Department of Education.
ACTION: Notice of final funding priorities for fiscal years 1998-1999
for Rehabilitation Research and Training Centers.
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SUMMARY: The Secretary announces final funding priorities for two
Rehabilitation Research and Training Centers (RRTCs) under the National
Institute on Disability and Rehabilitation Research (NIDRR) for fiscal
years 1998-1999. The Secretary takes this action to focus research
attention on areas of national need. These priorities are intended to
improve rehabilitation services and outcomes for individuals with
disabilities.
EFFECTIVE DATE: These priorities take effect on July 29, 1998.
FOR FURTHER INFORMATION CONTACT: Donna Nangle. Telephone: (202) 205-
5880. Individuals who use a telecommunications device for the deaf
(TDD) may call the TDD number at (202) 205-9136. Internet:
Donna__Nangle@ed.gov
Individuals with disabilities may obtain this document in an
alternate format (e.g., Braille, large print, audiotape, or computer
diskette) on request to the contact person listed in the preceding
paragraph.
SUPPLEMENTARY INFORMATION: This notice contains final priorities under
the Disability and Rehabilitation Research Projects and Centers Program
for two RRTCs related to: (1) aging and mental retardation; and (2)
disability statistics.
These final priorities support the National Education Goal that
calls for every adult American to possess the skills necessary to
compete in a global economy.
The authority for the Secretary to establish research priorities by
reserving funds to support particular research activities is contained
in sections 202(g) and 204 of the Rehabilitation Act of 1973, as
amended (29 U.S.C. 761a(g) and 762).
Note: This notice of final priorities does not solicit
applications. A notice inviting applications is published in this
issue of the Federal Register.
Analysis of Comments and Changes
On May 4, 1998, the Secretary published a notice of proposed
priorities in the Federal Register (63 FR 24718-24721). The Department
of Education received three letters commenting on the notice of
proposed priorities by the deadline date. Technical and other minor
changes--and suggested changes the Secretary is not legally authorized
to make under statutory authority--are not addressed.
Aging With Mental Retardation
Comment: The RRTC should be required to carry out research and
develop models of service that support aging in place and showcase best
practices that provide for an institutional admission diversion. In
conjunction with this requirement, the RRTC should be required to
develop informational materials that would help people with mental
retardation reach a better understanding of what happens (and may
happen) to them as they age. These materials and information should
illustrate and guide the steps they can take to maintain a healthy
lifestyle as older adults.
Discussion: Under the second and third required activities of the
priority, an applicant could propose to carry out research and develop
models of service that support aging in place and showcase best
practices that provide for an institutional admission diversion. The
peer review process will evaluate the merits of this proposal. However,
NIDRR has no basis for requiring all applicants to carry out this
research.
In regard to the commenter's suggestion that RRTC should be
required to develop informational materials, the second general RRTC
requirement states that the RRTC must develop and disseminate
informational materials based on knowledge gained from the Center's
research activities, and disseminate the materials to persons with
disabilities, their representatives, service providers, and other
interested parties. Therefore, if an applicant proposes to carry out
the research suggested by the commenter, no further requirements are
necessary in order for the RRTC to develop this informational material.
Changes: None.
Comment: The requirement to ``identify, develop, and evaluate
accommodations that help maintain employment'' is not among the most
significant issues facing persons aging with mental retardation and
should be eliminated or made optional.
Discussion: NIDRR acknowledges that for the oldest segment of the
population of persons aging with mental retardation, maintaining
employment is not as significant an issue as others included in the
priority. However, there are a substantial number of persons aging with
mental retardation who are employed and face barriers to maintaining
employment as they age. Applicants have the discretion to emphasize or
deemphasize specific activities included in the priority depending upon
the importance the applicant attaches to the activity. An applicant
could deemphasize this activity, and the peer review process will
evaluate the merits of the proposal. NIDRR declines to eliminate the
activity because the knowledge gained from this research could prove to
be beneficial to those persons aging with mental retardation who are
employed.
Changes: None.
Comment: The required activity on health should be revised to
include: development of a model of medical education applicable to
managed care; research on coincident conditions in older age;
development of practice guidelines and standards for both women's and
men's health; identification of care practices to address very old
persons; and an examination of dementia care models that further
community living.
Discussion: Under the first activity of the priority, an applicant
could propose to carry out all of the projects included in the comment.
The peer review process will evaluate the merits of the proposal.
However, NIDRR has no basis for requiring all applicants to carry out
this research.
Changes: None.
Comment: The RRTC should be required to identify aging models that
are successful with the general population and demonstrate their
applicability with persons aging with mental retardation.
Discussion: Under the first and third activities, an applicant
could propose to identify aging models that are successful with the
general population and demonstrate their applicability with persons
aging with mental retardation. The peer review process will evaluate
the merits of the proposal. However, NIDRR has no basis for requiring
all applicants to carry out this research.
Changes: None.
Comment: More and more States are developing consumer-directed
models of supporting adults with mental retardation. However, not
enough empirical data exist about the effectiveness of these service
models. The topic of self-direction or consumer direction should be
incorporated into the third required activity.
Discussion: NIDRR agrees that integrating research on consumer
choice or self-direction in the activities of the RRTC is important and
needed.
Changes: The priority has been revised to require the RRTC to
address issues of self-direction in all of the required activities
except the fourth activity.
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Rehabilitation Research and Training Centers
The authority for RRTCs is contained in section 204(b)(2) of the
Rehabilitation Act of 1973, as amended (29 U.S.C. 760-762). Under this
program, the Secretary makes awards to public and private
organizations, including institutions of higher education and Indian
tribes or tribal organizations, for coordinated research and training
activities. These entities must be of sufficient size, scope, and
quality to effectively carry out the activities of the Center in an
efficient manner consistent with appropriate State and Federal laws.
They must demonstrate the ability to carry out the training activities
either directly or through another entity that can provide that
training.
The Secretary may make awards for up to 60 months through grants or
cooperative agreements. The purpose of the awards is for planning and
conducting research, training, demonstrations, and related activities
leading to the development of methods, procedures, and devices that
will benefit individuals with disabilities, especially those with the
most severe disabilities.
Description of Rehabilitation Research and Training Centers
RRTCs are operated in collaboration with institutions of higher
education or providers of rehabilitation services or other appropriate
services. RRTCs serve as centers of national excellence and national or
regional resources for providers and individuals with disabilities and
the parents, family members, guardians, advocates or authorized
representatives of the individuals.
RRTCs conduct coordinated, integrated, and advanced programs of
research in rehabilitation targeted toward the production of new
knowledge to improve rehabilitation methodology and service delivery
systems, to alleviate or stabilize disabling conditions, and to promote
maximum social and economic independence of individuals with
disabilities.
RRTCs provide training, including graduate, pre-service, and in-
service training, to assist individuals to more effectively provide
rehabilitation services. They also provide training including graduate,
pre-service, and in-service training, for rehabilitation research
personnel.
RRTCs serve as informational and technical assistance resources to
providers, individuals with disabilities, and the parents, family
members, guardians, advocates, or authorized representatives of these
individuals through conferences, workshops, public education programs,
in-service training programs and similar activities.
RRTCs disseminate materials in alternate formats to ensure that
they are accessible to individuals with a range of disabling
conditions.
NIDRR encourages all Centers to involve individuals with
disabilities and individuals from minority backgrounds as recipients of
research training, as well as clinical training.
The Department is particularly interested in ensuring that the
expenditure of public funds is justified by the execution of intended
activities and the advancement of knowledge and, thus, has built this
accountability into the selection criteria. Not later than three years
after the establishment of any RRTC, NIDRR will conduct one or more
reviews of the activities and achievements of the Center. In accordance
with the provisions of 34 CFR 75.253(a), continued funding depends at
all times on satisfactory performance and accomplishment.
General RRTC Requirements
The following requirements apply to the RRTCs pursuant to these
absolute priorities, unless noted otherwise. An applicant's proposal to
fulfill these requirements will be assessed using applicable selection
criteria in the peer review process.
The RRTC must provide: (1) Applied research experience; (2)
training on research methodology; and (3) training to persons with
disabilities and their families, service providers, and other
appropriate parties in accessible formats on knowledge gained from the
Center's research activities.
The RRTC must develop and disseminate informational materials based
on knowledge gained from the Center's research activities, and
disseminate the materials to persons with disabilities, their
representatives, service providers, and other interested parties.
The RRTC must involve individuals with disabilities and, if
appropriate, their representatives, in planning and implementing its
research, training, and dissemination activities, and in evaluating the
Center.
The RRTC must conduct a state-of-the-science conference and publish
a comprehensive report on the final outcomes of the conference. The
report must be published in the fourth year of the grant.
Priorities:
Under 34 CFR 75.105(c)(3), the Secretary proposes to give an
absolute preference to applications that meet the following priorities.
The Secretary proposes to fund under this competition only applications
that meet one of these absolute priorities.
Priority 1: Aging With Mental Retardation
Background
There are an estimated 550,000 adults 40 years and older with
mental retardation (McNeil, J., ``Special Report on Mental Retardation
and Mental Illness,'' Bureau of the Census, Survey of Income and
Program Participation, 1997). This population has aging-related health
and social care needs specific to their condition (McCarthy, J. and
Mullan, E., ``The Elderly with a Learning Disability (Mental
Retardation): An Overview,'' International Psychogeriatrics, 8 (3),
pgs. 489-501, 1996).
Current research has begun to identify secondary conditions that
are causally related to aging with mental retardation. For instance,
there is evidence that persons aging with mental retardation and a
lifelong history of certain medications (e.g., psychotropic, anti-
seizure) have a higher risk of developing secondary conditions such as
osteoporosis or tardive dyskinesia (Adlin, M., ``Health Care Issues,''
Older Adults with Developmental Disabilities: Optimizing Choice and
Change, Baltimore, Paul H. Brookes Pub. Co., pgs. 49-60, 1993). Persons
with Downs Syndrome have a higher prevalence of Alzheimer's disease at
an earlier age than the general population (Janicki, M., ``Practice
Guidelines for the Clinical Assessment and Care Management of
Alzheimer's Disease and Other Dementias Among Adults with Intellectual
Disability,'' Journal of Intellectual Disability Research, 40, pgs.
374-382, 1996). In addition, persons aging with mental retardation
experience aging-related conditions like hypertension, osteoarthritis,
heart disease, obesity, and high cholesterol levels. Treating such
conditions in persons aging with mental retardation is complicated by
difficulty in communicating about nutrition, exercise, and prescribed
treatment protocols (Edgerton, R. ``Some People Know How to Be Old,''
Life Course Perspectives on Adulthood and Old Age, American Association
on Mental Retardation Monograph Series, pgs. 53-66, 1994) and by poor
health maintenance practices (Edgerton, R. et al., ``Health Care for
Aging People with
[[Page 35478]]
Mental Retardation,'' Mental Retardation, 32 (2), pgs. 146-150, April,
1994).
The health status and needs of older women with mental retardation
have received little research attention and merit special
consideration. We have limited information on the availability of
screening for breast or cervical cancers, onset and reactions to
menopause, and treatment for osteoporosis in menopausal and post-
menopausal women, or the general health status of women with mental
retardation as they age (Murphy, L., Aging with Developmental
Disabilities: Women's Health Issues, Texas Arc, 1997).
Approximately 80 percent of adults with mental retardation live at
home, often with their families of origin, and many are known to the
service system (Seltzer, M., ``Aging Parents with Co-Resident Adult
Children: The Impact of Lifelong Caregiving,'' Life Course Perspectives
on Adulthood and Old Age, American Association on Mental Retardation,
pgs. 3-18, 1994). A major issue facing older family caregivers is
planning for the future of their children aging with mental
retardation. A shortage of alternative living arrangements and the
aging of family members contribute to this concern (Heller, T.,
``Support Systems, Well-being, and Placement Decision-making Among
Older Parents and Their Adult Children with Developmental
Disabilities,'' Older Adults with Developmental Disabilities;
Optimizing Choice and Change, pgs. 107-122, 1993). For many families,
planning for the future financial needs of their members with mental
retardation is a particular concern.
There has been little research examining family caregiving
throughout the life of the person aging with mental retardation,
particularly analysis of sibling roles in the caregiving process.
Cross-sectional studies have suggested that older family caregivers
perceive less personal burden than do younger caregivers (Hayden, M.,
``Support, Problem-Solving/Coping Ability, and Personal Burden of
Younger and Older Caregivers of Adults with Mental Retardation,''
Mental Retardation, 35, pgs. 364-372, 1997). With increasing age, there
appears to be greater acceptance of the family member and greater
reciprocity in caregiving as the child with mental retardation takes on
caregiving roles with aging parents (Heller, T., ``Adults with Mental
Retardation as Supports to their Parents: Effects on Parental
Caregiving Appraisal,'' Mental Retardation, 35, pgs. 338-346, 1997).
For adults living in residential settings, family involvement has
been low. However, such involvement has many benefits for the adult
including increasing social interaction, oversight of residential
conditions, provision of recreational opportunities, assistance with
financial planning activities (Feinstein, C., ``A Survey of Family
Satisfaction with Regional Treatment Centers and Community Services to
Persons with Mental Retardation in Minnesota,'' Philadelphia: Conroy
and Feinstein Associates, 1988). Older adults with mental retardation
have lower rates of family involvement than younger adults (Hill, B.,
Living in the Community: A Comparative Study of Foster Homes and Small
Group Homes for People with Mental Retardation, Minneapolis: University
of Minnesota, Center for Residential and Community Services, 1989).
Approximately 40 percent of working age persons with mental
retardation work outside the home (McNeil, J., ``Current Population
Reports: Americans With Disabilities,'' U.S. Census Bureau, P70-61,
1997). Research indicates that as persons with mental retardation grow
older, they experience new work-related problems because of functional
decline and changing job requirements. Furthermore, many individuals
with mental retardation and their employers are unaware of the
resources and services available to help them solve these problems
(Parent, W., ``Social Integration in the Workplace; An Analysis of the
Interaction Activities of Workers with Mental Retardation and their Co-
workers,'' Education and Training in Mental Retardation, 27, pgs. 28-
37, 1992).
Many individuals aging with mental retardation have limited access
to assistive technology that might help them cope with aging-related
functional limitations such as decreased mobility. Assistive technology
has generally been underutilized by persons with mental retardation of
all ages because few devices successfully incorporate accommodations
that assist persons with cognitive impairments in their use (Wehmeyer,
M., ``The Use of Assistive Technology by People with Mental Retardation
and Barriers to This Outcome: A Pilot Study,'' Technology and
Disability, 4, pgs. 195-204, 1995). Also, staff and families often are
insufficiently aware of assistive technology solutions or of options
for its funding.
Information on health care utilization rates and educational and
employment status of persons with mental retardation is not readily
available. Although a number of Federal agencies, some States, and
private research institutions collect mental retardation data, too
often these data are unanalyzed. Secondary analysis of existing data on
mental retardation would help identify research questions and gaps in
service for persons with mental retardation and their families.
Priority 1
The Secretary will establish an RRTC on Aging with Mental
Retardation to assist individuals aging with mental retardation and
their families to prevent secondary conditions, maintain general
overall health, plan for the future, and maximize independence. The
RRTC shall:
(1) Identify, develop, and evaluate programs that promote health,
including early recognition and treatment of secondary conditions, with
special emphasis on the needs of women aging with mental retardation;
(2) Investigate determinants of the role played by the family of
origin in providing care for persons aging with mental retardation,
with special emphasis on adults in residential settings and the role of
siblings in the caregiving process;
(3) Identify, develop, and evaluate techniques that assist
individuals with mental retardation and their families to plan for
future needs, including future financial needs;
(4) Analyze and disseminate information from national data sets and
public health surveillance data on adults with mental retardation to
identify health care utilization, educational, and employment patterns;
(5) Identify, develop, and evaluate accommodations that help
maintain employment;
(6) Identify best practices in the use of assistive technology or
universal design to compensate for physical and psychological
consequences of aging with mental retardation.
In carrying out these purposes, the RRTC must:
* Coordinate with other relevant research and demonstration
activities sponsored by the National Center on Medical Rehabilitation
Research at the National Institutes of Health, the National Institute
on Mental Health, the National Institute on Aging, the Rehabilitation
Services Administration, the Department of Veteran Affairs, the Social
Security Administration, the Health Care Financing Administration, and
the Rehabilitation Research Training Centers on Managed Care and
Personal Assistance Services; and
* Address issues of consumer choice or self-direction in all
of the activities except the fourth activity.
[[Page 35479]]
Priority 2: Disability Statistics
Background
A number of Federal, State, and private agencies collect
information on persons with disabilities. While some of this
information is analyzed, significant amounts of unanalyzed data are
generated. The National Health Interview Survey, the Survey of Income
and Program Participation, the California Work and Health Survey, other
surveys, population data, information on program participation, data on
institutions, and market research profiles provide many indicators
about the lives of persons with disabilities. Policy makers, program
directors, and others need information on the incidence, prevalence and
distribution of disabilities, as well as the integration of persons
with disabilities into society. Likewise, reliable information on use
of services such as long-term care, transportation, vocational
rehabilitation and personal care assistance is extremely valuable to
individuals with disabilities and their organizations, planners,
researchers and policy makers.
The 1994-95 National Health Interview Survey on Disability (NHIS-D)
conducted by the National Center for Health Statistics was developed,
in part, to meet the demands for data from numerous agencies
(Verbrugee, L. M., ``The Disability Supplement to the 1994-95 National
Health Interview Survey,'' for the National Center for Health
Statistics). The 1994-95 NHIS-D offers an excellent opportunity to
analyze many variables related to persons with disabilities.
Researchers can use the NHIS-D to determine access to health care and
personal services, use of assistive technologies, and community
participation, among other key descriptors.
The major Federal agencies that routinely collect information on
disability publish only a small fraction of statistical information
derived from that data. Most agency data collections are driven by
statutory requirements and agencies report statistics about receipt of
program services and subsets of eligible individuals. These constraints
limit the usefulness of the data that are collected. Easier access to a
full range of data on disability for policy makers and others may be
assured, in part, by providing a central resource for disability
statistics and information and an organized and comprehensive system
for the collection, analysis, and synthesis of the data. A disability
statistics center can use existing data to conduct meta-analyses
focused on problems such as employment, use of health care and social
services, household situations, family composition, and educational
levels.
Researchers, policy makers and others have begun to work within the
framework of the ``New Paradigm of Disability,'' a contextual model of
disability that recognizes the role of the built environment and of
social and cultural factors in the disablement-enablement process. Most
national surveys fail to measure the role of environmental factors in
the operational definitions of disability used, tending to focus solely
on health problems as the locus of disability. (Kirchner, C., ``Looking
Under the Streetlamp: Inappropriate Use of Measures Just Because They
Are There'' Journal of Disability Policy Studies, 7:77-90. 1996). The
Americans with Disabilities Act (ADA) emphasizes barrier removal,
accessibility, and reasonable accommodations. Barriers may be physical
or may involve programmatic exclusions and other social obstacles.
Despite increasing recognition that data systems must be enhanced to
meet newly developing information needs, such as those suggested by the
New Paradigm of Disability and the ADA, there is a lack of
environmental measures that have been tested for accuracy and
reliability. This has been an impediment to the development of survey
and census measures of disability at the national and State levels.
New survey measures must be developed to accurately and reliably
depict disability in the context of individual health and environmental
factors. The resulting questions must take into account the interaction
between the individual and the environment and examine the effects of
that interaction on the ability to carry out daily activities and
normative social roles. This includes examination of the immediate
living arrangements of the person's household and the larger community
environment. Architectural accessibility features, assistive
technologies, transportation, and other accommodations and supports
must be addressed.
With increased global interest in disability, researchers must be
aware of new developments in the World Health Organization sponsored
International Committee on Impairments, Disabilities, and Handicaps,
and consider international data sets for purposes of comparison with
U.S. data and, as appropriate, to generate hypotheses to be tested
against U.S. data.
Given these needs and opportunities in the promotion and use of
disability statistics, a Center that can identify major sources and
perform secondary analyses of existing data, including meta-analyses on
important topics, will be a cornerstone of a future disability data
initiative. The Center can also contribute to the future of disability
research through the development, testing, and dissemination of data
collection items that address the New Paradigm of Disability.
Priority 2
The Secretary will establish an RRTC to improve collection and
analysis of disability statistics to guide development of disability
policies. The RRTC shall:
(1) Conduct secondary analyses of critical and relevant data sets,
including estimates of the incidence, prevalence, and distribution of
various disabilities, and disseminate analytical reports;
(2) Develop new measures, designed for inclusion in general
population surveys, addressing the effect of physical, policy, and
social environments on persons with disabilities; and disseminate these
to survey designers, researchers, and statistical agencies;
(3) Conduct meta-analyses on key variables such as, but not limited
to, employment, income and health status, using a range of relevant
existing data sets on disability; and analyze the policy implications
based upon the results of these analyses;
(4) Identify major gaps in demographic and program data on the
disabled population and develop strategies for addressing those gaps;
and
(5) Serve as a resource to researchers, consumers and consumer
groups, planners, and policy makers for statistical information on
disability and develop and implement a marketing plan to support
dissemination of that information.
In carrying out the purposes of the priority, the RRTC must
coordinate with relevant activities sponsored by the Centers for
Disease Control and Prevention, the Office of the Assistant Secretary
for Planning and Evaluation in the Department of Health and Human
Services, the Bureau of the Census, the Department of Labor, and the
National Institutes of Health.
Electronic Access to This Document
Anyone may view this document, as well as all other Department of
Education documents published in the Federal Register, in text or
portable document format (pdf) on the World
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Wide Web at either of the following sites:
http://ocfo.ed.gov/fedreg.htm
http://www.ed.gov/news.html
To use the pdf you must have the Adobe Acrobat Reader Program with
Search, which is available free at either of the preceding sites. If
you have questions about using the pdf, call the U.S. Government
Printing Office at (202) 512-1530 or, toll free at 1-888-293-6498.
Anyone may also view these documents in text copy only on an
electronic bulletin board of the Department. Telephone: (202) 219-1511
or, toll free, 1-800-222-4922. The documents are located under Option
G--Files/Announcements, Bulletins and Press Releases.
Note: The official version of this document is the document
published in the Federal Register.
Applicable Program Regulations: 34 CFR Parts 350.
Program Authority: 29 U.S.C. 760-762.
(Catalog of Federal Domestic Assistance Numbers 84.133B,
Rehabilitation Research and Training Centers)
Dated: June 23, 1998.
Judith E. Heumann,
Assistant Secretary for Special Education and Rehabilitative Services.
[FR Doc. 98-17113 Filed 6-26-98; 8:45 am]
BILLING CODE 4000-01-P