[Federal Register: April 21, 1997 (Volume 62, Number 76)]
[Notices]
[Page 19431-19439]
From the Federal Register Online via GPO Access [wais.access.gpo.gov]
[DOCID:fr21ap97-140]
[[Page 19431]]
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Part IV
Department of Education
_______________________________________________________________________
National Institute on Disability and Rehabilitation Research; Notice
[[Page 19432]]
DEPARTMENT OF EDUCATION
National Institute on Disability and Rehabilitation Research
AGENCY: Department of Education.
ACTION: Notice of Proposed Priorities for Fiscal Years 1997-1998 for
Rehabilitation Research and a Knowledge Dissemination and Utilization
Project.
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SUMMARY: The Secretary proposes priorities for the Rehabilitation
Research and Training Center (RRTC) Program and the Knowledge
Dissemination and Utilization (D&U) Program under the National
Institute on Disability and Rehabilitation Research (NIDRR) for fiscal
years 1997-1998. The Secretary takes this action to focus research
attention on areas of national need to improve rehabilitation services
and outcomes for individuals with disabilities, and to assist in the
solutions to problems encountered by individuals with disabilities in
their daily activities.
DATES: Comments must be received on or before May 21,1997.
ADDRESSES: All comments concerning these proposed priorities should be
addressed to David Esquith, U.S. Department of Education, 600
Independence Avenue, SW., Switzer Building, Room 3424, Washington, DC
20202-2601. Internet: NPP__D&U@ed.gov
FOR FURTHER INFORMATION CONTACT: David Esquith. Telephone: (202) 205-
8801. Individuals who use a telecommunications device for the deaf
(TDD) may call the TDD number at (202) 205-2742. Internet:
David__Esquith@ed.gov
SUPPLEMENTARY INFORMATION: This notice contains proposed priorities to
establish RRTCs for research related to persons who are late-deafened
or hard-of-hearing, substance abuse, rural rehabilitation, and medical
rehabilitation services and outcomes. In addition there is a D&U
project on parenting.
These proposed priorities support the National Education Goal that
calls for all Americans to possess the knowledge and skills necessary
to compete in a global economy and exercise the rights and
responsibilities of citizenship.
The Secretary will announce the final funding 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 particular projects depends on the final
priorities, 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 these
competitions will be published in the Federal Register concurrent
with or following publication of the notice of the final priorities.
Rehabilitation Research and Training Centers (RRTCs)
Authority for the RRTC program of NIDRR 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.
Under the regulations for this program (see 34 CFR 352.32) the
Secretary may establish research priorities by reserving funds to
support particular research activities.
Description of the Rehabilitation Research and Training Center
Program
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 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 and other rehabilitation 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.
NIDRR encourages all Centers to involve individuals with
disabilities and minorities as recipients in research training, as well
as clinical training.
Applicants have considerable latitude in proposing the specific
research and related projects they will undertake to achieve the
designated outcomes; however, the regulatory selection criteria for the
program (34 CFR 352.31) state that the Secretary reviews the extent to
which applicants justify their choice of research projects in terms of
the relevance to the priority and to the needs of individuals with
disabilities. The Secretary also reviews the extent to which applicants
present a scientific methodology that includes reasonable hypotheses,
methods of data collection and analysis, and a means to evaluate the
extent to which project objectives have been achieved.
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
The Secretary proposes that the following requirements will apply
to these RRTCs pursuant to the priorities unless noted otherwise:
[[Page 19433]]
Each RRTC must conduct an integrated program of research to develop
solutions to problems confronted by individuals with disabilities.
Each RRTC must conduct a coordinated and advanced program of
training in rehabilitation research, including training in research
methodology and applied research experience, that will contribute to
the number of qualified researchers working in the area of
rehabilitation research.
Each Center must disseminate and encourage the use of new
rehabilitation knowledge. They must publish all materials for
dissemination or training in alternate formats to make them accessible
to individuals with a range of disabling conditions.
Each RRTC must involve individuals with disabilities and, if
appropriate, their family members, as well as rehabilitation service
providers, in planning and implementing the research and training
programs, in interpreting and disseminating the research findings, and
in evaluating the Center.
Priorities
Under 34 CFR 75.105(c)(3), the Secretary proposes to give an
absolute preference to applications that meet one of the following
priorities. The Secretary proposes to fund under these competitions
only applications that meet one of these absolute priorities:
Proposed Priority 1: Maintaining the Employment Status and Addressing
the Personal Adjustment Needs of Individuals Who Are Late-Deafened or
Hard-of-Hearing
Background
Individuals whose hearing is impaired, but who can understand
conversational speech with, or without, amplification are hard-of-
hearing (HOH). Adults who are late-deafened (L-D) become deaf after
having experienced hearing as well as speech and language development.
Adults who are late-onset HOH and those who are L-D have common and
different employment-related and personal adjustment needs. A third
group of persons who are considered hearing-impaired are those persons
who are prelingually deaf. Because the prelingually deaf have been and
continue to be the focus of other NIDRR-funded research, this proposed
priority is for research that addresses the needs of adults who are L-D
or late-onset HOH.
According to data from the Bureau of the Census, the number of
individuals who have a functional limitation in hearing normal
conversation is approximately 10.9 million (McNeil, J., ``Americans
with Disabilities: 1991-1992,'' Household Economic Studies, P70-33,
December 1993). The National Center for Health Statistics (NCHS)
estimates the number of persons who are HOH ranges from 20 million to
22 million (``National Health Survey,'' Series 10, No. 188, 1994). The
NCHS studies use the ``Gallaudet Hearing Scale'' which is self-
reporting and quantifies the amount of interference with hearing in
ordinary day-to-day situations. According to the Association of Late-
Deafened Adults, the number of persons who are L-D is estimated to be
between 800,000 and 1.5 million. For 1991 and 1992, of all persons 21
to 64 years old who had some functional limitation hearing normal
conversation, 3,335,000 individuals or 63.6 percent were employed,
while 189,000 individuals, or 58.2 percent of those who were totally
unable to hear normal conversation, were employed (McNeil, J., 1993).
Over the years, NIDRR has supported a number of research efforts to
address the problems caused by various hearing impairments. At various
times these efforts have included: developing hearing aids and
telecommunication devices; enhancing the use and teaching of sign
language interpreters; developing interventions for ``low-functioning''
deaf persons with multiple disabilities; developing more effective
interventions and service models for hearing impaired vocational
rehabilitation clients; and studying mental health issues of persons
who are deaf, HOH, or L-D.
As the population ages, as people recover from serious illness with
hearing impairments, and as environmental factors contribute to the
incidence of hearing loss, it has become clear that there is a growing
population of persons who experience disabling hearing loss as adults.
The time of onset is likely to be in older adulthood, but this
population is distinguished by the fact that the hearing loss occurs
after the person has developed spoken language, has completed
substantial formal education, and may have worked, married, had
children, or developed social relationships--as a hearing person with
``normal'' speech.
These individuals face major adjustment problems in all phases of
their lives, and may undergo depression and disruption in family or
community life, as well as in their ability to perform their work and
maintain their career. Such individuals need to learn ways to maintain
communication skills--both receptive and expressive--and frequently
need interventions to enable them to maintain speech quality (i.e.,
volume, modulation, articulation). Because they socialize and work with
colleagues, family, and friends in a hearing and speaking environment,
and because of their age, they are not likely to make a transition to
deaf culture even if they do learn some sign language. Most will depend
on lip-reading, amplification, or written communication. Multiple
personal adjustment and work performance issues confront these
individuals ranging from safety (e.g., driving and traffic noise, fire
alarms, public announcement warning systems) to following instructions
at work, to communicating with doctors, dentists, and therapists about
their health and medications.
The impact of partial or complete hearing loss may have compound
effects on the work status of individuals who are L-D or HOH. In
addition to the functional impact of the hearing loss on an employee's
performance, the employee may be unfamiliar with his or her civil
rights and concerned about disclosing his or her condition for fear of
dismissal, demotion, or loss of potential career advancement. This fear
of disclosure not only produces additional anxiety, but also may delay
or prevent the employee from obtaining needed assistance. Even if the
employee discloses his or her condition, human resource personnel,
family counselors, and other employment and social service providers
may not be familiar with the sundry impacts that hearing loss and
impairment can have on work performance and personal life. The
inability of human resource personnel, family counselors, and others to
provide effective services can increase the individual's sense of
isolation and anxiety.
Factors such as early identification, family support, and the
provision of reasonable accommodations can play an important role in
enabling the individual to adjust to the hearing impairment and
maintain employment, family, and community status. Providing such
individuals with appropriate assistive technology (e.g., assistive
listening devices, realtime computer assisted captioning) in a timely
manner can make a significant difference in job performance and morale.
The onset of a hearing impairment or the increased loss of hearing
ability also can have a significant impact on the personal life of an
individual who is L-D or HOH. It is not uncommon for those individuals
to experience feelings of disorientation and alienation and to withdraw
from family and friends. That
[[Page 19434]]
withdrawal reinforces the individual's isolation and can, in extreme
instances, lead to secondary complications such as alcohol and drug
abuse.
Proposed Priority 1
The Secretary proposes to establish an RRTC for the purpose of
conducting research on the maintenance of employment status and
personal adjustment of persons who are L-D or HOH. The RRTC will:
(1) Identify and analyze the factors that negatively impact the
employment status and the personal life of persons who are L-D or HOH;
(2) Develop and disseminate interventions that address these
employment and personal adjustment problems, including early
identification, reasonable accommodations, counseling, and assistive
technology;
(3) Develop information materials on effective interventions and
disseminate those materials to employers, human resource organizations,
appropriate counseling organizations, and organizations representing
persons who are L-D or HOH;
(4) Identify materials that address the rights of persons who are
L-D or HOH under the ADA, and other disability rights laws, disseminate
these materials to organizations representing those persons, and inform
those organizations about opportunities to receive training and
technical assistance from entities such as the Disability and Business
Technical Assistance Centers (DBTACs); and
(5) Develop training and technical assistance materials and provide
training and technical assistance to employers, human resource
organizations, appropriate counseling organizations, and organizations
representing persons who are L-D or HOH to enable them to address
effectively the employment and personal adjustment problems experienced
by persons who are L-D or HOH.
In carrying out the purposes of the priority, the RRTC shall:
* Identify and address the employment and personal
adjustment issues that are common to both persons who are L-D and those
who are HOH, as well as those issues that are unique to each
population; and
* Coordinate with NIDRR's other research projects addressing
individuals who are L-D or HOH, the DBTACs, and the Assistive
Technology Projects.
Proposed Priority 2: Improving Vocational Rehabilitation Outcomes for
Individuals Who Are Substance Abusers
Background
In 1993, NIDRR funded the establishment of a three-year RRTC on
Substance Abuse and Disability to address the vocational rehabilitation
needs of two major categories of eligible individuals served by the
State Vocational Rehabilitation (VR) Services program. The two
categories of VR eligible individuals were: (1) Those whose substance
abuse has resulted in a work disability; and (2) those who have some
other disability but whose substance abuse interferes with their
ability to benefit from vocational rehabilitation services.
In addition, the 1993 priority authorizing the RRTC limited the
scope of substance abuse to substances other than alcohol abuse
(although the presence of alcohol abuse in conjunction with other
substance abuse was within the scope of the RRTC). For the purposes of
this priority, NIDRR is proposing to expand the scope of the priority
to include alcohol abuse with or without the presence of other
substance abuse. NIDRR is particularly interested in receiving public
comments on expanding the scope of substance abuse addressed by the
RRTC.
Individuals with a disability that results in a substantial
impediment to employment and who can benefit from VR services,
including those individuals whose disabling condition is due to
substance abuse, are eligible for services through the State Vocational
Rehabilitation (VR) Services Program, authorized under Title I of the
Rehabilitation Act. Program data for fiscal year 1995 show that
substance abuse was reported as the primary disabling condition for
51,339 eligible individuals who exited the program in that year. Of the
51,339 individuals with a primary disability of substance abuse, 22,708
persons' primary disabling condition was alcohol abuse and 28,631
persons' primary disabling condition was drug abuse. Of the 40,766
eligible individuals with a primary disabling condition of substance
abuse who received services before exiting the program, 21,718 (53
percent) achieved an employment outcome (Rehabilitation Services
Administration, Caseload Services data, 1995).
There are also individuals with disabilities served by the State VR
program for whom substance abuse is a co-existing, and sometimes
hidden, condition. In addition to those individuals who exited the VR
program in 1995 for whom substance abuse was reported as the primary
disabling condition, another 33,808 individuals were reported to have a
secondary disability of substance abuse. Findings from a State-wide
survey of alcohol, tobacco, illicit drugs, and medication among
applicants for vocational rehabilitation services from Michigan
Rehabilitation Services indicate that while alcohol use patterns
approximate the general population, the percent of applicants who
report current tobacco use or lifetime use of illicit drugs appear
considerably higher than the general population (Moore, D. and Li, L.,
``Substance Abuse Among Applicants for Vocational Rehabilitation
Services,'' Journal of Rehabilitation, Vol. 60, No. 4, pgs. 48-53,
1994).
Unrecognized or untreated substance abuse as a co-existing
condition can be a greater barrier to employment than the primary
disability. Chief among those barriers are complications of
psychological and social adjustment to the disability, impaired
learning processes, decreased chances for vocational preparation and
employment, and increased risk of adverse medical effects from the
intersection of abused substances with treatment medications.
One of the primary modes of transmission of HIV is through
injection drug use when an HIV-infected syringe is shared between
individuals. The higher incidence of intravenous drug abuse in socio-
economically depressed communities means that resultant HIV is
concentrated among individuals who lack health care, have low education
and little prior work experience, and lack access to transportation,
assistive technology, and other community supports that facilitate
vocational rehabilitation and job maintenance. Substance abuse also
leads to more high risk sexual behaviors, further increasing the
incidence of HIV infection in this population. The presence of HIV
infection can be a complicating factor in the vocational rehabilitation
of substance abusers. There is a need for research on the specific
vocational rehabilitation needs of substance abusers with HIV.
The need for an expanded understanding of the relationship between
vocational rehabilitation, substance abuse, and disability has been
further underscored by recent changes in legislation, including welfare
reform and discontinuance of Social Security Insurance and Social
Security Disability Insurance benefits for individuals who previously
were eligible based on addictions to alcohol and other drugs. The
removal of substantial numbers of substance abusers from income
supports
[[Page 19435]]
and medical assistance is likely to cause strains on the vocational
rehabilitation service delivery system by increasing the demand for
services, decreasing the ``comparable benefits'' dollars available for
VR services, decreasing access to general health care during
rehabilitation, and increasing client financial instability. Changes in
the management and financing of health care in both the public and
private sector, including managed care, may also have an impact on VR
agencies' financial arrangements with third party payers and access to
comparable benefits for substance abuse treatment.
Although there is an increasing prevalence of substance abuse among
a diverse population of individuals undergoing rehabilitation, many
service providers communicate that they have an inadequate
understanding about substance abuse and co-existing disability and that
this adversely impacts their ability to address the problem effectively
(Heinemann, A. W., ``An Introduction to Substance Abuse and Physical
Disability,'' Substance Abuse and Physical Disability, New York: The
Haworth Press, 1993). Practitioners in a growing number of disciplines
within the rehabilitation field need information about substance abuse
and co-existing disability, including rehabilitation educators,
vocational rehabilitation counselors, health care providers,
independent living specialists, community-based rehabilitation
providers, rehabilitation administrators, chemical dependence
counselors, and directors of State vocational rehabilitation programs.
In order to address this need and because there are other Federal
agencies that focus significant resources on individuals whose sole or
primary disability is substance abuse, NIDRR is proposing that this
RRTC focus its efforts, although not exclusively, on issues affecting
individuals with co-existing disabilities. Particular emphasis would be
given to VR eligible individuals for whom substance abuse is not their
sole or primary disabling condition, but whose substance abuse
interferes with their ability to benefit from vocational rehabilitation
services. NIDRR is particularly interested in receiving public comments
on this emphasis.
Proposed Priority
The Secretary proposes to establish an RRTC for the purpose of
improving vocational rehabilitation outcomes for VR eligible
individuals whose substance abuse has resulted in a work disability, or
who have some other disability that results in a substantial impediment
to employment but whose substance abuse interferes with their ability
to benefit from vocational rehabilitation services. The RRTC shall:
(1) Conduct epidemiological studies to advance the understanding of
the relationship between substance abuse and disability among
individuals who are eligible for the State Vocational Rehabilitation
Services program, including determining the relative prevalence of
substance abuse among persons with more severe disabilities; (2)
Develop, identify, and evaluate information about effective methods for
providing vocational rehabilitation services to individuals who are
substance abusers;
(3) Investigate the impact of recent legislative changes (including
welfare reform and SSA eligibility) and changes in health care
management and financing of substance abuse treatment on the provision
of vocational rehabilitation services to individuals who are substance
abusers; and
(4) Disseminate informational materials and provide technical
assistance and training to VR eligible individuals whose substance
abuse has resulted in a work disability, or who have some other
disability that results in a substantial impediment to employment but
whose substance abuse interferes with their ability to benefit from
vocational rehabilitation services, vocational rehabilitation
personnel, and related rehabilitation disciplines concerning effective
strategies for providing vocational rehabilitation services.
In carrying out the purposes of the priority, the RRTC shall:
* Give special emphasis to issues affecting the vocational
rehabilitation of individuals with co-existing disabilities,
particularly issues affecting VR eligible individuals for whom
substance abuse is not their sole or primary disabling condition, but
whose substance abuse interferes with their ability to benefit from
vocational rehabilitation services.
* Address the vocational rehabilitation needs of individuals
with HIV/AIDS who are VR eligible individuals whose substance abuse has
resulted in a work disability, or who have some other disability that
results in a substantial impediment to employment but whose substance
abuse interferes with their ability to benefit from vocational
rehabilitation services;
* Where appropriate, address the needs of transitioning
special education students who may have substance abuse problems, their
special education teachers, and administrators; and
* Coordinate with projects on substance abuse supported by
the Substance Abuse and Mental Health Services Administration and with
NIDRR centers and projects on vocational rehabilitation and emerging
disability populations.
Proposed Priority 3: Improving Employment and Independent Living
Outcomes for Persons With Disabilities in Rural Areas
Background
Between 11 and 15 million persons living in rural areas have a
chronic or permanent disability, a higher per capita rate of disability
than exists in cities with populations over 50,000 (Young, C. and
O'Day, B., ``Issues in Rural Independence: Funding,'' Rural Monograph
Series.'' Compared to their counterparts in metropolitan areas, persons
with disabilities in rural areas have higher rates of activity
limitation (16.4% versus 14.6%), work limitation (14.2% versus 10.9%),
and personal care limitation (4.7% versus 3.8%) (LaPlante, M. et al.,
``Disability Statistics Report #7,'' Disability in the United States:
Prevalence and Causes, 1992, Institute for Health and Aging, University
of California, San Francisco, July, 1996). Persons with disabilities in
rural areas face challenges that are quite different from their peers
living in and around metropolitan areas. The quality of life for many
people with disabilities residing in rural America is characterized by:
(1) Limited job opportunities; (2) inadequate health care; (3)
isolation and inadequate transportation; (4) lack of accessible
housing; and (5) underfunded social services.
For many rural areas, social and economic vitality hinges on
overcoming the problems posed by remoteness from urban centers--such as
the lack of easy access to advanced education, medical knowledge, and
enterprise development opportunities. People with disabilities living
in rural communities often live a long distance from vocational
rehabilitation (VR) agencies, independent living centers (ILCs), and
other social service agencies. Although these resources have great
potential for reducing the impact of disability, service delivery
challenges limit their availability in rural areas.
Currently, Federal, State, and local initiatives such as
Empowerment Zones (EZ) or Enterprise Communities (EC) are addressing
community and economic development in rural areas. The Federal
government, working across agency lines and in a new partnership with
State and local government and the private sector, has provided
distressed communities with the tools they need
[[Page 19436]]
and flexibility they desire, in the form of block grants, tax breaks
and waivers. In return, EZ/EC communities--residents, community
leaders, businesses, State and local governments and schools--must
demonstrate that they are taking responsibility for their own futures
by developing and implementing a plan to utilize these tools. The U.S.
Department of Agriculture (USDA) is authorized to designate three rural
EZs and thirty ECs.
These projects are intended to demonstrate that innovative economic
development and service delivery approaches can make a difference for
people with disabilities living in rural areas. It is important for
individuals with disabilities living in rural communities participate
in long-range community development planning. Their involvement is
crucial to ensure that the unique needs of people with disabilities for
employment, economic self-sufficiency, transportation, affordable and
accessible housing, and access to generic community facilities are
addressed. Research is needed to study current approaches, and to
develop new models, for increasing their participation in public and
private economic development and services improvement initiatives.
The health problems experienced by people with disabilities living
in rural areas are complicated by the burden of travelling long
distances and the general shortage of primary health care providers. As
a result, people with disabilities living in rural areas may experience
a high rate of secondary conditions each year such as pressure sores,
physical deconditioning, urinary tract infections, depression and pain
(Seekins, T. et al., ``A Descriptive Study of Secondary Conditions
Reported by a Population of Adults with Physical Disabilities Served by
Three Independent Living Centers in a Rural State,'' Journal of
Rehabilitation, Vol. 60, No. 2, pgs. 47-51, 1994). Proper education,
support delivered by health clinics and independent living centers, and
utilization of telemedicine can dramatically improve the health of
adults with disabilities and reduce medical service utilization.
The USDA's Rural Utilities Service, which funds telecommunications
infrastructure in many rural areas, provides grants to link rural
health clinics with larger hospitals to better serve rural residents.
The U.S. Department of Health and Human Services' (DHHS') Health Care
Financing Administration funds Rural Telemedicine Grants which
demonstrate and collect information on the feasibility, costs,
appropriateness, and acceptability of telemedicine for improving access
to health services for rural residents and reducing the isolation of
rural practitioners. The intended beneficiaries of these grants are
rural health care providers, patients, and rural communities which gain
from this program.
Changes in health care policy, such as managed care, are
significantly affecting the lives of people with disabilities living in
rural areas. For example, managed care emphasizes primary care and
control of access to specialized services. Persons with significant
disabilities in rural areas, however, have difficulty obtaining primary
care and often need extensive services and access to highly specialized
providers to prevent death or further disability (``Medicaid Managed
Care: Serving the Disabled Challenges State Programs,'' U.S. General
Accounting Office (GAO)/Health, Education, and Human Services-96-136).
The use of telecommunications technologies may be a critical
element in efforts to provide social services as well as maintain and
foster economic development. Advanced telecommunications technologies--
the Internet, videoconferencing and high-speed data transmission--offer
rural areas the chance to overcome some of the problems they face as a
result of their geographic isolation. These technologies can link rural
areas with other communities and expertise to improve medical services,
create new jobs, and increase rural residents' access to education
(``Rural Development: Steps Toward Realizing the Potential of
Telecommunications Technologies,'' GAO/Resources, Community, and
Economic Development-96-155).
Interactive technology can link isolated rural settings with
comprehensive services at distant facilities. With these linkages, the
distant facility can review X-rays, CAT scans, and other medical
evidence to diagnose an illness and prescribe treatment without having
the patient make long, and sometimes difficult, trips to the larger
institution. Colleges and schools can offer classes, and even degree
programs, to students in remote locations. Large businesses can
establish or maintain branch offices in rural areas by using
videoconferencing or on-line access to hold meetings and conduct
business. There is a need to design ways to apply these emerging
interactive technologies on the lives of people with disabilities
living in rural areas, particularly as Federal and other public and
private programs expand their uses of interactive technology.
Proposed Priority 3
The Secretary proposes to establish an RRTC for the purpose of
examining means to improve the employment status and ability of persons
with disabilities to live independently in rural areas. The RRTC shall:
(1) Identify, analyze and evaluate the impact of rural economic
development strategies in improving the employment outcomes and
economic status of people with disabilities living in rural
communities;
(2) Identify and examine issues of access to health care for
persons with disabilities living in rural areas, particularly those
issues contributing to the onset of secondary conditions;
(3) Develop and evaluate strategies to increase the participation
of people with disabilities in local public planning for community
development;
(4) Identify, develop, and evaluate strategies to improve rural
transportation, accessible housing, and access to generic community
facilities services for people with disabilities;
(5) Identify and evaluate strategies to improve the use of
telecommunications technologies for the delivery of health, employment,
education, and social services to people with significant disabilities
living in rural communities; and
(6) Develop training and informational materials and provide
training and information to persons with disabilities, and providers of
health care, vocational rehabilitation, and independent living
services, on effective strategies for improving the employment, health,
and independent living outcomes of people with disabilities living in
rural areas.
In carrying out the purposes of the priority, the RRTC shall:
* Coordinate with NIDRR-funded research, training and
demonstration activities on delivery of rehabilitation and independent
living services in rural areas, including those sponsored by RSA and
the RRTC on managed care;
* Where appropriate, address the needs of transitioning
special education students and their special education teachers and
administrators;
* Coordinate with rural projects affecting persons with
disabilities funded by USDA and DHHS; and
* Address the needs of persons with disabilities in rural
communities in all parts of the country, including persons from ethnic
and racial minority backgrounds.
[[Page 19437]]
Proposed Priority 4: Medical Rehabilitation Services and Outcomes
Background
Medical rehabilitation services are provided to individuals with
disabilities to restore maximum function and independence.
Traditionally, these services were provided by physicians, nurses, and
allied health professionals in hospitals and rehabilitation centers.
Medical rehabilitation service consumers comprise a wide range of
diagnostic groups including individuals with stroke, orthopedic
conditions, brain injury, spinal injury, and neurologic conditions. The
need for medical rehabilitation services for persons with disabilities
is expected to continue to grow in the coming decades because of
increased chances of survival after trauma, disease, or birth anomaly,
increased prevalence of disability related to the general aging of the
population, and the increased incidence of individuals with
disabilities acquiring secondary disabilities or chronic conditions as
a result of increased longevity. Despite large growth projections, the
impact of the projected increase in need for medical rehabilitation has
not been extensively investigated in relation to long-term costs and
outcomes.
Changes in the organization and delivery of health services issues
are having a significant impact on the delivery and outcomes of
comprehensive medical rehabilitation services. Recent trends, such as
decreased length of stay associated with the high costs of inpatient
care, have contributed to the growth of rehabilitation programs in sub-
acute facilities, such as skilled nursing homes, and increased use of
outpatient and home health care. Many rehabilitation hospitals, as well
as medical rehabilitation programs within hospitals, have been
influenced significantly by program consolidations, changes in
ownership, third-party reimbursement provisions, and related factors
that have decreased the number of beds and the average length of
patient stay. At the same time, demand is increasing for sub-acute
rehabilitation and general outpatient physical medicine (``Adapting to
a Managed Care World: The Challenge for Physical Medicine and
Rehabilitation,'' Lewin-VHI Workforce Study, American Academy of
Physical Medicine and Rehabilitation, 1995).
The effectiveness of the treatments and therapeutic interventions
that are generally used in clinical practice are, for the most part,
not evaluated in terms of their impact on long-term functional outcomes
or their cost. The cost-effectiveness and impact of alternative
rehabilitative strategies should be evaluated rigorously in order to
obtain information that will contribute to cost-effective, rational,
and fair decisions regarding the provision of treatment and services.
Medical rehabilitation services need an enhanced validated outcome
measurement system to inform decisions in management issues facing
health care consumers, providers, and insurers. Increasingly, payers
are seeking to base decisions of whether to provide coverage for
selected services or interventions on the basis of proven efficacy or
cost-effectiveness as determined by rigorous scientific evidence such
as that gained through randomized controlled trials.
Functional Assessments (FAs) can be used to evaluate an
individual's ability to carry out activities of daily living and
instrumental activities of daily living such as eating, bathing, moving
from place to place, dressing, doing household chores or other
necessary business, and taking care of personal hygiene. Data from FAs
also are used to predict post-rehabilitation functioning, and to
evaluate rehabilitation services. Improving rehabilitation practices
and outcomes requires an ability to assess the status and changes in
function in many areas. Multiple measures of function and activities of
daily living are needed in all rehabilitation settings, including in
the home and community. The increased use of telemedicine and
multimedia technology is rapidly changing the manner in which
functional assessment measures are generated and shared among members
of the rehabilitation team. Functional outcome measures are of
increasing importance in medical economics, benefits planning, managed
care, and program evaluation (Ikegami, N., ``Functional Assessment and
Its Place in Health Care,'' New England Journal of Medicine, Vol. 332,
pgs. 598-599, 1995).
There is a need to collect and analyze data to determine the
organization and delivery of rehabilitative care, including such
parameters as facility and program sizes (i.e., economies of scale) and
the number and mix of health care providers needed to serve various
disability groups. Few data are available to define optimal strategies
for outpatient services, nor are there methods to apply FAs or gather
patient outcome data in non-hospital settings.
Improving rehabilitation medicine and ensuring that disabled
individuals will have access to needed medical rehabilitation in the
future requires: an ability to assess functional status and changes in
status in many functional areas; the ability to evaluate rehabilitation
outcomes for individuals with various diagnoses, characteristics, and
interventions; and the ability to apply these measures in health
services policy research in order to affect policy and funding
decisions in the health care delivery context.
In the past, NIDRR has supported the development and application of
the ``Functional Independence Measure'' (FIM), a criterion-referenced
scale that has been widely accepted in inpatient rehabilitation
settings, and also the development of the ``Craig Handicap Assessment
and Reporting Technique'' (CHART), which contains scales for assessing
the World Health Organization (WHO) dimensions of handicap, and is
currently being refined to measure cognitive components of handicap.
NIDRR currently supports an RRTC on Functional Assessment that has
contributed to the scientific measurement of medical rehabilitation
through applications of the FIM, refinement of the CHART, and
management and analysis of the Uniform Data System (UDS), a collection
of data from the application of FIM measures in many institutions.
Current measurement systems, such as the FIM and the UDS, have made
significant contributions, but need modifications to increase their
utility and applicability in the new environment of rehabilitation
care. For example, many practitioners and theorists have suggested that
the FIM does not make adequate provision for the role of assistive
technology in attaining functional levels. Like the FIM, most
functional assessment measurement systems were designed for use in an
inpatient setting. These systems need to be evaluated and modified to
measure functional status and functional change outside of hospital and
clinical settings, either in community-based facilities or in real-
world environments of daily living. The FIM, for example, needs further
refinement to address the social and environmental dimensions of
disablement. The UDS at present contains data on a limited number of
disabilities, and those measurements again are not community-based.
NIDRR also has supported a center on medical rehabilitation
services that has looked at such factors as supply and demand for
rehabilitation facilities and practitioners, financing, and evaluation
of the outcomes of rehabilitation medicine. This center has also
addressed the changing context for the delivery of medical
rehabilitation and access to medical rehabilitation by various
population groups. Both of these
[[Page 19438]]
centers have made contributions to the maturing of the field of medical
rehabilitation and its ability to evaluate and document its
interventions and outcomes.
However, it is now clear that the field needs a larger and more
integrated effort to refine measures of functional ability, changes in
ability over the lifespan or in response to medical rehabilitation
interventions, and to apply the measurement system in the changing
environment in which medical rehabilitation is delivered. NIDRR
therefore is proposing a large-scale effort to involve significant
leaders in the classification and measurement of function, the
evaluation of rehabilitation interventions, and the broader application
of knowledge to the organization and management of medical
rehabilitation services in today's environment.
Proposed Priority 4
The Secretary proposes to establish an RRTC for the purpose of
examining the impact of changes in the field of rehabilitation medicine
and developing improved measures for assessing individual function and
the impact of medical rehabilitation services. The RRTC shall:
(1) Identify and evaluate validated functional outcome measures
that can be used or modified for assessing the impact of medical
rehabilitation services in a wide range of rehabilitation settings,
with particular emphasis on measures that can be adapted for use in
outpatient and community-based settings, including those that use
telemedicine and multimedia technology;
(2) Develop or improve measures to assess the impact of the social
and physical environment in achieving quality rehabilitation outcomes,
including the use of assistive technology in attaining functional
outcomes;
(3) Identify or develop uniform database elements and standards
based on validated individual measures at the person level for
determining the cost-effectiveness and functional impact of specific
rehabilitation interventions used by medical rehabilitation and allied-
health disciplines across multiple settings and disability populations;
(4) Identify obstacles to the use of validated functional outcomes
measures in a wide range of settings in which medical rehabilitation
services are provided, and in decisions to provide and assess the
effectiveness of medical rehabilitation treatments, and develop
strategies and evaluate pilot projects to overcome those obstacles;
(5) Identify strategies for determining the long-term results of
medical rehabilitation care, including use of assistive technology;
(6) Analyze how models for the organization of medical
rehabilitation services affect outcomes and costs, and how the
demographic, economic, and presenting conditions of consumers affect
their utilization of rehabilitation services and the outcomes that are
achieved; and
(7) Develop an information dissemination and training program to
enable consumers, providers, researchers, policy makers, and relevant
others in health and rehabilitation settings to assess the quality of
medical rehabilitation services.
In carrying out the purposes of the priority, the RRTC shall:
* Coordinate with rehabilitation medicine research and
demonstration activities sponsored by NIDRR, the National Center on
Medical Rehabilitation Research, Veterans Affairs, and the Health Care
Financing Administration; and
* Support two National Conferences as follows: (1) A
conference on the use of functional outcome measures to improve medical
rehabilitation practices and interventions, and (2) a conference on
improving validity and reliability in the measurement of rehabilitation
outcomes.
Knowledge Dissemination and Utilization Projects
Authority for the D&U program of NIDRR is contained in sections 202
and 204(a) 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. Under the regulations for this
program (see 34 CFR 355.32), the Secretary may establish research
priorities by reserving funds to support particular research
activities.
Priority
Under 34 CFR 75.105(c)(3), the Secretary proposes to give an
absolute preference to applications that meet the following priority.
The Secretary proposes to fund under this competition only applications
that meet this absolute priority:
Proposed Priority 5: Parenting With a Disability Technical Assistance
Center
Background
Approximately one in eleven families with children at home includes
one or more parents with a disability (LaPlante, M., ``Disability in
the Family,'' presented at the annual meeting of the American Public
Health Association, Atlanta, GA, 1991). This proportion can be expected
to increase as a correlate of the gains that persons with disabilities
have achieved in their efforts to live and work independently in the
community. In the course of becoming parents and rearing children,
persons with disabilities may encounter a variety of attitudinal,
physical, medical, and legal barriers. They may also find
misinformation or an absence of information regarding advances in
fields that address issues related to parenting.
NIDRR has been addressing the physical barriers and reproductive
issues faced by parents with disabilities through a variety of research
and development projects. Since 1993 NIDRR has supported a
Rehabilitation Research and Training Center on Families in which one or
more adult parent or guardian has a disability. The Center has
investigated a wide range of parenting issues, including the assistive
technology needs of parents with disabilities, training obstetricians
to deal with the needs of women with disabilities, and needs of mothers
with visual disabilities. The Center has created and identified a wide
range of valuable information for parents and professionals. In
addition, over the last ten years, NIDRR has supported research
projects on the design and development of new adaptive equipment for
parents with physical disabilities and parenting assessment techniques.
A wide array of parenting equipment has been developed, for example, a
lifting harness and an adapted baby bathing cart. Information is also
available on the social service needs of parents with disabilities. As
a result of these and other research, training, and development
efforts, a substantial body of knowledge now exists related to
parenting with a disability.
Persons with disabilities who want to become, or remain parents,
may need information and technical assistance. A NIDRR-sponsored focus
group on women and disabilities held in 1994 recommended that NIDRR
explore issues related to sexuality, reproductive health, pregnancy and
parenting for women with disabilities, including ``the level of
information that women have about these topics'' (``Focus Group on
Women and Disabilities,'' unpublished ``Report of Proceedings,'' NIDRR,
pg. 8, July, 1994). Parents with disabilities and prospective parents
with disabilities need information about related advances in the field
of assistive technology and medicine, public policy
[[Page 19439]]
and legal developments, and parenting resources.
One source of information and valuable experience is persons with
disabilities who are parents. These individuals have a wealth of
knowledge and can not only share their experiences and practical
information, but also serve as uniquely qualified sources of support.
Currently, this ``parent to parent'' networking is primarily informal
and limited in scope.
Persons with disabilities may encounter substantial attitudinal and
legal barriers in their efforts to become pregnant, gain or maintain
custody, or adopt children. Barbara Faye Waxman, an expert on
reproductive rights, notes that laws allowing sterilization of persons
with disabilities remain on the books in some States and that social
service agencies are often too quick to put the non-disabled children
of parents with disabilities up for adoption (Mathews, J., ``The
Disabled Fight to Raise Their Children,'' Washington Post Health
Section, August 18, 1992). Most States treat disability as prima facie
evidence of parental unfitness and a possible detriment to the child
(Conly-Jung, C., ``The Early Parenting Experiences of Mothers with
Visual Impairments and Blindness,'' Dissertation, California School of
Professional Psychology, Alameda, CA, pg. 21, May, 1996). One important
strategy in the effort to overcome these attitudinal and legal barriers
is providing social service, legal, and medical professionals with
information that dispels stereotypes and describes advances in the
related fields that enable persons with disabilities to provide a safe
and nurturing environment for their children.
Proposed Priority 5
The Secretary proposes to establish a center for the purpose of
providing technical assistance and disseminating parenting information
to persons with disabilities and to social service, medical, and legal
service providers. The technical assistance center will:
(1) Identify and disseminate technological, legal, and medical
information on parenting, pregnancy, custody, and adoption to parents,
and prospective parents with disabilities, and service providers in
related field of social services, law, and medicine;
(2) Develop training materials on parenting with a disability and
disseminate those materials to organizations and institutions of higher
education that provide pre-service and in-service training to
professionals in related fields of social services, law, and medicine,
as well as to organizations representing persons with disabilities;
(3) Provide technical assistance on parenting with a disability to
persons with disabilities and service providers, including making
referrals and serving as a clearinghouse of technical information; and
(4) Develop and establish a parent-to-parent network that enables
experienced parents with disabilities to voluntarily provide
information and support to persons with disabilities interested in
becoming or remaining parents.
In carrying out the purposes of the priority, the technical
assistance center shall:
* Collect and synthesize information from other NIDRR-
funded projects and centers that could be relevant to parenting with a
disability including, but not limited to, the Assistive Technology
Projects;
* Collaborate with other NIDRR and OSEP-funded projects and
centers that address issues related to parenting and to disability
rights of persons with disabilities; and
* Establish a national toll-free telephone hotline and
publish a quarterly newsletter.
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, Mary Switzer Building, 330 C Street S.W., Washington, D.C.,
between the hours of 9:00 a.m. and 5:00 p.m., Monday through Friday of
each week except Federal holidays.
Applicable Program Regulations
34 CFR Parts 350, 352, and 355.
Program Authority: 29 U.S.C. 760-762.
(Catalog of Federal Domestic Assistance Numbers: 84.133B,
Rehabilitation Research and Training Center Program, 84.133D,
Knowledge Dissemination and Utilization Program)
Dated: April 11, 1997.
Judith E. Heumann,
Assistant Secretary for Special Education and Rehabilitative Services.
[FR Doc. 97-10200 Filed 4-18-97; 8:45 am]
BILLING CODE 4000-01-P