[Federal Register: May 4, 1998 (Volume 63, Number 85)]
[Page 24717-24721]
From the Federal Register Online via GPO Access [wais.access.gpo.gov]

[[Page 24717]]


Part VII

Department of Education
National Institute on Disability and Rehabilitation Research; Notice of
Proposed Funding Priorities for Fiscal Years 1998-1999 for 
Rehabilitation Research and Training Centers

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National Institute on Disability and Rehabilitation Research; 
Notice of Proposed Funding Priorities for Fiscal Years 1998-1999 for 
Rehabilitation Research and Training Centers

SUMMARY: The Secretary proposes 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 

DATES: Comments must be received on or before June 3, 1998.

ADDRESSES: All comments concerning these proposed priorities should be 
addressed to Donna Nangle, U.S. Department of Education, 600 Maryland 
Avenue, S.W., room 3418, Switzer Building, Washington, D.C. 20202-2645. 
Comments may also be sent through the Internet: comments@ed.gov
    You must include the term ``Mental Retardation-RRTC's'' in the 
subject line of your electronic message.

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) 205-2742. Internet: 
    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 

SUPPLEMENTARY INFORMATION: This notice contains proposed priorities 
under the Disability and Rehabilitation Research Projects and Centers 
Program for two RRTCs related to: aging with mental retardation and 
disability statistics.
    These proposed 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).
    The Secretary will announce the final priorities in a notice in the 
Federal Register. The final priorities will be determined by responses 
to this notice, available funds, and other considerations of the 
Department. Funding of a particular project depends on the final 
priority, the availability of funds, and the quality of the 
applications received. The publication of these proposed priorities 
does not preclude the Secretary from proposing additional priorities, 
nor does it limit the Secretary to funding only these priorities, 
subject to meeting applicable rulemaking requirements.

    Note: This notice of proposed priorities does not solicit 
applications. A notice inviting applications under this competition 
will be published in the Federal Register concurrent with or 
following the publication of the notice of final priorities.

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 
    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 
    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 
    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 
    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.

Proposed General RRTC Requirements

    The Secretary proposes that the following requirements apply to 
these RRTCs pursuant to these absolute priorities unless noted 
otherwise. An applicant's proposal to fulfill these proposed 
requirements will be assessed using applicable selection criteria in 
the peer review process. The Secretary is interested in receiving 
comments on these proposed requirements:
    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.

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    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 
    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.


    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.

Proposed Priority 1: Aging With Mental Retardation

    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 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 

[[Page 24720]]

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.
Proposed Priority 1
    The Secretary proposes to 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 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.

Proposed Priority 2

    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 
    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

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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.
Proposed Priority 2
    The Secretary proposes to 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; 
    (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 Wide Web at either of the 
following sites:


    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 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.

Invitation to Comment

    Interested persons are invited to submit comments and 
recommendations regarding these proposed priorities. All comments 
submitted in response to this notice will be available for public 
inspection, during and after the comment period, in Room 3424, Switzer 
Building, 330 C Street S.W., Washington, D.C., between the hours of 
9:00 a.m. and 4:30 p.m., Monday through Friday of each week except 
Federal holidays.
    Applicable Program Regulations: 34 CFR Parts 350 and 353.

    Program Authority: 29 U.S.C. 760-762.

(Catalog of Federal Domestic Assistance Numbers 84.133B, 
Rehabilitation Research and Training Centers)

    Dated: April 28, 1998.
Judith E. Heumann,
Assistant Secretary for Special Education and Rehabilitative Services.
[FR Doc. 98-11709 Filed 5-1-98; 8:45 am]