[Federal Register Volume 62, Number 42 (Tuesday, March 4, 1997)]
[Notices]
[Pages 9886-9892]
From the Federal Register Online via the Government Publishing Office [www.gpo.gov]
[FR Doc No: 97-5241]
[[Page 9885]]
_______________________________________________________________________
Part IV
Department of Education
_______________________________________________________________________
National Institute on Disability and Rehabilitation Research; Notice
Federal Register / Vol. 62, No. 42 / Tuesday, March 4, 1997 /
Notices
[[Page 9886]]
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
research and demonstration projects, rehabilitation research and
training centers, and a knowledge dissemination and utilization
project.
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SUMMARY: The Secretary proposes priorities for the Research and
Demonstration Project (R&D) Program, 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 April 3, 1997.
ADDRESSES: All comments concerning these proposed priorities should be
addressed to David Esquith, U.S. Department of Education, 600
Independence Avenue, S.W., Switzer Building, Room 3424, Washington,
D.C. 20202-2601. Internet: [email protected]
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) 205-8133. Internet: David--
Esquith@ed.gov
SUPPLEMENTARY INFORMATION: This notice contains proposed priorities to
establish R&D projects for model systems for burn injury and traumatic
brain injury, RRTCs for research related to aging with a spinal cord
injury and severe problem behaviors, and a D&U project to improve the
utilization of existing and emerging rehabilitation technology in the
State vocational rehabilitation program.
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.
Research and Demonstration Projects
Authority for the R&D program of NIDRR is contained in section
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 agencies
and private agencies and organizations, including institutions of
higher education, Indian tribes, and tribal organizations. This program
is designed to assist in the development of solutions to the problems
encountered by individuals with disabilities in their daily activities,
especially problems related to employment (see 34 CFR 351.1). Under the
regulations for this program (see 34 CFR 351.32), the Secretary may
establish research priorities by reserving funds to support the
research activities listed in 34 CFR 351.10.
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 this program only
applications that meet one of these absolute priorities:
Proposed Priority 1: Burn Injury Rehabilitation Model System
Background
Each year more than 2.0 million persons (about one percent of the
population of the United States) receive a burn injury. Of these, 6,500
to 12,000 do not survive; 500,000 require medical care and result in
temporary disability with respect to home, school, or work activities;
and 70,000 to 100,000 are severe enough to be admitted to a hospital
(Rice, D.P. and MacKenzie, E.J., ``Cost of Injury in the United States:
A Report to Congress,'' Atlanta, GA: Centers for Disease Control,
1989).
In 1994, NIDRR provided funding to establish Burn Injury
Rehabilitation Model Systems of Care. These R&D projects focused
primarily on developing and demonstrating a comprehensive,
multidisciplinary model system of rehabilitative services for
individuals with severe burns, and evaluating the efficacy of that
system through the collection and analysis of uniform data on system
benefits, costs, and outcomes. NIDRR's multi-center model systems
program is designed to study the course of recovery and outcomes
following the delivery of a coordinated system of care including
emergency care, acute care management, comprehensive in-patient
rehabilitation, and long-term interdisciplinary follow-up services.
Burn rehabilitation requires interventions as soon as possible
after admission to hospitals and has treatment implications for several
years following hospital discharge. Burn trauma often causes injuries
and impairments in addition to the burn, and many individuals with burn
injuries have secondary complications related to the burn condition.
These may include open wounds, contractures, neuropathies, cosmetic
abnormalities, deconditioning, bony deformities, hypersensitivity to
heat and cold, amputation, psychosocial distress, chronic pain, and
scarring. The complicated nature of burn injuries, the difficulty of
treatment, and the risk of infection with possible loss of function
requires interventions quickly and frequently to attempt to maintain a
functional lifestyle and return to living independently. Minimization
of physical deterioration and prevention of further impairment and
functional limitation is critical and research is needed to find the
appropriate procedures for clinical applications. Research is needed to
develop and refine methods to determine the effectiveness of
interventions to prevent, manage, and reduce medical complications that
contribute to short- and long-term disability in burn patients.
Improved measures are needed of an individual's functional ability
as a result of burn rehabilitation interventions. Functional assessment
brings objectivity to rehabilitation by establishing appropriate,
uniform descriptors of rehabilitation care and changes in individual
capacity to perform activities of daily living or other measurable
elements of an individual's major life activities (Granger, C. and
Brownscheidle, C., ``Outcome Measurement in Medical Rehabilitation,''
International Journal of
[[Page 9887]]
Technology Assessment in Health Care, 11:2, 1995). Increasingly, health
and rehabilitation services require effectiveness and impact measures
to evaluate their services as a part of procedures for cost-
reimbursement and billing for services. With greater emphasis on
individual choice in services delivery, consumers and advocates are
likewise advocates for functional assessment measures as encoders of
service effectiveness. Few existing functional assessment measures,
however, address the specialized and complex combination of
psychosocial and medical challenges encountered by an individual who
has experienced severe burn injury (Rucker, K., et al., ``Analysis of
Functional Assessment Instruments for Disability Rehabilitation
Programs,'' SSA Contract No. 600-95-2194, Virginia Commonwealth
University, 1996).
Burn injuries can produce emotional problems, such as post-
traumatic stress disorders, anxiety, and depression. These problems may
result from a variety of causes (e.g., reaction to cosmetic
alterations, changes in functional abilities, changes in work status,
restrictions on recreational activities) (Cromes, G.F. and Helm, P.A.,
``Burn Injuries,'' in Medical Aspects of Disability, pgs. 92-104,
1993). The aesthetic disability of disfigurement is frequently more
severe than the physical disability and may result in profound social
consequences for those afflicted (Hurren, J.S., ``Rehabilitation of the
Burned Patient: James Laing Memorial Essay for 1993,'' Burns, Vol. 21,
No. 2, 1995). The more severe the burn, the greater the likelihood of
long-term psychosocial adjustment issues related to both physical and
psychosocial problems, that affect quality of life. Although
psychosocial adjustment is a critical factor in the long-term recovery
of burn injury patients, there continues to be limited emphasis on
research in the area of psychosocial rehabilitation and its
relationship to quality of life. Family and friends play an important
role and provide major support in the psychological recovery of burn
patients. Research in this area needs to address the role of the family
and personal advocacy systems in providing support during the burn
injury rehabilitation process.
Difficulty with long-term follow-up of all patients after hospital
discharge has always been a problem, but it is even more difficult when
the individual lives far from the specialized rehabilitation unit.
Problems are also encountered with those individuals living in rural
areas, where access to burn injury rehabilitation, including mental
health services, may be quite limited due to lack of proximity to
specialized practitioners, limited access to technological advances,
and hospital closures.
Return-to-work and educational pursuits are important measures of
rehabilitation success. Work is an important source of satisfaction,
self-respect, and dignity, as well as an arena for socialization for
individuals who have experienced burn injury (Salisbury, R., ``Burn
Rehabilitation: Our Unanswered Challenge,'' 1992 Presidential Address
to the American Burn Association, April, 1992). However, the efficacy
of vocational rehabilitation interventions for this population has not
been documented adequately. The physical, psychosocial, and emotional
factors that lead to successful employment have not been clearly
identified. Research is needed to examine relationships between
vocational interventions and supports, employment, functional capacity,
and degree of burn injury, including secondary complications.
Proposed Priority 1
The Secretary proposes to establish Burn Injury Rehabilitation
Model Systems R&D projects for the purpose of demonstrating a
comprehensive, multidisciplinary model system of rehabilitative
services for individuals with severe burns. An R&D project must:
(1) Identify and evaluate techniques to prevent secondary
complications;
(2) develop and evaluate outreach programs to improve follow-up
services for rural populations;
(3) develop and evaluate measures of functional outcome for burn
rehabilitation; and
(4) identify and evaluate interventions, including vocational
rehabilitation interventions, to improve psychosocial adjustment,
quality of life, community integration, and employment-related
outcomes.
In carrying out these purposes, the R&D project must:
Participate in clinical and systems analysis studies of
the burn injury rehabilitation model system by collecting and
contributing data on patient characteristics, diagnoses, causes of
injury, interventions, outcomes, and costs to a uniform, standardized
national data base as prescribed by the Secretary; and
Consider collaborative projects with other model systems.
Proposed Priority 2: Traumatic Brain Injury Model Systems
Background
An estimated 1.9 million Americans experience traumatic brain
injury (TBI) each year (Collins, J.F., ``Types of Injuries by Selected
Characteristics: US 1985-87,'' National Center for Health Statistics,
Vital Health Stat 10 (175), 1990). Incidence is highest among youth and
younger adults. Young males have the highest incidence rates of any
group (``Disability Statistics Abstract,'' No. 14, Disability
Statistics Rehabilitation Research & Training Center, University of
California, San Francisco, November, 1995). Each year approximately
70,000 to 90,000 TBI survivors enter a life of continuing, debilitating
loss of function; an estimated 5,000 survivors experience seizure
disorders; and 2,000 enter into a persistent vegetative state. The
number of people surviving head injuries has increased significantly
over the last 25 years as a result of faster and better emergency
treatment, more rapid and safer transport to specialized treatment
facilities, and advances in medical treatment (National Foundation for
Brain Research, Washington, DC, 1994).
In 1987, NIDRR provided funding to establish TBI Model Systems of
Care. These R&D projects focused primarily on developing and
demonstrating a comprehensive, multidisciplinary model system of
rehabilitative services for individuals with TBI, and evaluating the
efficacy of that system through the collection and analysis of uniform
data on system benefits, costs, and outcomes. NIDRR's multi-center
model systems program is designed to study the course of recovery and
outcomes following the delivery of a coordinated system of care
including emergency care, acute neuro-trauma management, comprehensive
in-patient rehabilitation, and long-term interdisciplinary follow-up
services.
The TBI Model Systems serve a substantial number of patients,
allowing the projects to conduct clinical research and program
evaluation, which maximize the potential for project replication. In
addition, the TBI Model Systems have the advantage of a complex data
collection and retrieval program with the capability to analyze the
different system components and provide information on project cost
effectiveness and benefits. Information is collected throughout the
rehabilitation process, permitting long-term follow-up on the course of
injury, outcomes, and changes in employment status, community
integration, substance abuse and family needs. The TBI Model Systems
projects serve as
[[Page 9888]]
regional and national models for program development and as information
centers for consumers, families, and professionals.
The TBI Model Systems National Database reports that the average
length of stay in acute care has decreased approximately 50 percent,
from 30 days in 1989 to 15 days in 1996; and the average length of stay
in in-patient rehabilitation has decreased 38 percent, from 52 days in
1989 to 32 days in 1996. With the changing patterns of service
delivery, there continues to be a need to establish and evaluate new
rehabilitation interventions and strategies. Specialized measurement
tools have been developed by the TBI Model Systems to assess progress
and describe clinical and functional outcomes. Refinement of these
measurement tools is necessary to demonstrate the effectiveness of
rehabilitation interventions in in-patient and outpatient settings.
After the individual is discharged from an in-patient setting, there is
an ongoing need for outpatient and community reintegration services in
order to continue therapeutic interventions and the educational and
referral process. As the average length of stay in in-patient settings
decreases, there is a greater need to evaluate outpatient and community
reintegration programs.
Findings from a multi-center investigation of employment and
community integration following TBI highlight the need for post-acute
rehabilitation programs with particular emphasis on vocational
rehabilitation (Sander, A., et al., Journal of Head Trauma
Rehabilitation, Vol. 11, No. 5, pgs. 70-84, 1996). Kreutzer states that
employment and productivity, relating to others in the community, and
independently caring for oneself at home are important quality-of-life
components (``TBI: Models and Systems of Care,'' Conference Syllabus,
Medical College of Virginia, April, 1996). As functional recovery
progresses during the first year or more after the injury, the focus of
rehabilitation shifts from medical intervention and physical
restoration to psychosocial and vocational adaptation. The ultimate
goal of psychosocial and vocational rehabilitation is community
reintegration and employment. It is important to emphasize that
services aimed at community reintegration must consider not only
attributes and limitations of the injured individuals, but also the
social, educational, and vocational systems in which the individual
will function. In addition, rates of competitive employment decrease
substantially from pre-injury levels. Head injury frequently results in
unemployment, and there are significant relationships between risk
factors (e.g., substance abuse) and this changed employment status.
However, there is no reliable information regarding the magnitude of
risk associated with different factors, or with different levels of
these factors (Dikmen, S., et al., ``Employment following Traumatic
Head Injuries,'' Archives of Neurology, Vol. 51, February, 1994).
A major disability like TBI has a profoundly disorganizing impact
on the lives of individuals with TBI and their families. Questions
involving community, family, and vocational restoration, as well as
generic concerns about future happiness and fulfillment, are common
(Banja, J., & Johnston, M., ``Ethical Perspectives and Social Policy,''
Archives of Physical Medicine Rehabilitation, Vol. 75, SC-19, December,
1994). Even individuals who have integrated well into society
experience adverse psychosocial effects. Employment instability,
isolation from friends, and increased need for support are a few of the
problems encountered by individuals with TBI. Families often function
as the primary support system for individuals with TBI after they are
discharged. There is a clear need for research to develop family
treatment strategies and explore their effect on outcomes for
individuals with TBI.
The health care costs associated with TBI are staggering. The
direct medical costs of TBI treatment have been estimated at more than
$4 billion annually (Max, W., et al., ``Head Injuries: Costs and
Consequences,'' Journal of Head Trauma Rehabilitation, Vol. 6, pgs. 76-
91, 1991). In view of current scrutiny of all health care spending,
which may result in pressures to constrict or deny rehabilitation care
to individuals with traumatic brain injury, it is important to gather
information on the efficacy and cost-effectiveness of various treatment
interventions and service delivery models. Credible outcome monitoring
systems are needed to establish guidelines by which fair compromises
can be reached (Johnston, M. & Hall, K., ``Outcomes Evaluation in TBI
Rehabilitation, Part I: Overview and System Principles,'' Archives of
Physical Medicine and Rehabilitation, Vol. 75, December, 1994). A
greater emphasis on outcomes measurements and management will foster
the gathering of information on efficacy and cost-effectiveness.
Violence-induced TBI is increasingly common, and has significant
implications for rehabilitation and community reintegration. According
to the 1991 National Health Interview Survey data, violence was
responsible for nine percent of all non-fatal TBIs. In addition,
violence was a cause of injury in 30 percent of the 684 external injury
cases in the TBI Model Systems database (a higher frequency due, in
part, to the urban setting of one of the TBI Model Systems). The
frequency of violence as a cause of TBI, in part, can be attributed to
the fact that the individuals most likely to sustain TBI (i.e., males
under age 18) are also those most likely to be involved in crimes and
violence. The increase in violence as a cause of brain injury may have
consequences with regard to rehabilitation costs, treatment
interventions and long-term outcomes. For example, individuals with
violence-related injuries show more difficulties with community
integration skills one year following injury, which evidences itself in
areas of social integration and productivity. Further research is
needed to examine whether individuals who sustain a TBI as a result of
violence require specialized rehabilitation interventions.
Proposed Priority 2
The Secretary proposes to establish Model Systems TBI R&D projects
for the purpose of demonstrating a comprehensive, multidisciplinary
model system of care for individuals with TBI. An R&D project must:
(1) Investigate efficacy of alternative methods of service delivery
interventions after in-patient rehabilitation discharge;
(2) Identify and evaluate interventions that can improve vocational
outcomes and community integration;
(3) Develop key predictors of rehabilitation outcome at hospital
discharge and at long-term follow-up;
(4) Determine relationships between cost of care and functional
outcomes; and
(5) Examine the implications of violence as a cause of TBI on
treatment interventions, rehabilitation costs, and long-term outcomes.
In carrying out these purposes, the R&D Systems project must:
Participate in clinical and systems analysis studies of
the traumatic brain injury model system by collecting and contributing
data on patient characteristics, diagnoses, causes of injury,
interventions, outcomes, and costs to a uniform, standardized national
data base as prescribed by the Secretary;
Consider collaborative projects with other model systems;
and
[[Page 9889]]
Coordinate research efforts with other NIDRR grantees that
address TBI-related issues.
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 l973, 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 such
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:
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 3: Effective Interventions for Children and Youth
With Disabilities Who Exhibit Severe Problem Behaviors
Background
In recent years researchers have focused on the application of non-
aversive approaches to reduce and eliminate severe problem behaviors
(SPBs) exhibited by children and youth with disabilities. This has been
the case because of ethical concerns about aversive interventions
expressed by disability professionals, parents, and advocates, as well
as research findings which indicate that aversive interventions are
largely ineffective in eliminating or reducing SPBs over an extended
period of time. Because of their disruptive nature, SPBs such as
physical aggression, self-injury, violence, and property destruction
are among the primary obstacles to full inclusion of children and youth
with disabilities in age-appropriate community-based activities and
regular education settings. School and community-based program
personnel need effective methods to reduce and eliminate SPBs in order
to provide these children and youth with disabilities with
opportunities to learn, play, and work with their non-disabled peers.
Previous research in this area has improved our understanding of
the early indicators of SPBs. For example, children with disabilities
who display minor self-injurious behavior during the preschool years
are strong candidates to exhibit more SPBs within two years (Hall, S.,
``Early Intervention of Self-
[[Page 9890]]
injurious Behavior in Young Children with Intellectual Disabilities:
Naturalistic Observation,'' Presented at the Annual Meeting of the
American Association of Mental Retardation, San Francisco, June, 1995).
Further research is needed on how severe problem behavior patterns
develop and whether early intervention efforts can reduce, and perhaps
prevent, SPBs.
Preliminary research has also indicated that problem behaviors can
be reduced by understanding the antecedents to and function of the
behavior. Accordingly, children and youth with disabilities who exhibit
SPBs may be able to learn to self-manage their problem behaviors.
While there are encouraging indications that non-aversive
approaches can be effective in reducing and eliminating SPBs, there is
a need to develop effective interventions that can be maintained over
extended periods of time. Treatments of self-injurious behaviors are
particularly problematic in regard to long-term effectiveness. Research
has shown that children who exhibit self-injurious behaviors, even
after intensive non-aversive treatment programs, may revert to self-
injury at high rates within a few months of intervention (Durand, V.M.,
et al., ``The Course of Self-injurious Behavior Among People with
Autism,'' Paper presented at the Annual Meeting of the Berkshire
Association for Behavior Analysis and Therapy, Amherst, MA. 1995).
Information from functional assessments can be used to develop
educational plans and address inappropriate behavior. Functional
assessment is the general label assigned to describe a set of processes
(e.g., interviews, rating, rating scales, direct observations, and
systematic experimental analyses of specific situations) for defining
the events in an environment that reliably predict and maintain
behaviors. More research needs to be been done in order to expand the
application of functional assessments with children and youth with
disabilities who exhibit severe behavior problems.
Under normal circumstances, children and youth with disabilities
who exhibit SPBs in school and the community are also exhibiting these
behaviors at home. In order for non-aversive approaches to be
implemented consistently across environments, parents and other
caregivers must not only consent to the approach, but also be capable
of implementing the approach effectively in the home environment. The
non-aversive strategies that are developed must be compatible with the
home environment, and take into account providing parents and guardians
with the skills they need to implement the program effectively.
Proposed Priority 3
The Secretary proposes to establish an RRTC for the purpose of
providing school and community-based program personnel with effective
methods to reduce and eliminate SPBs in children and youth with
disabilities. The RRTC shall:
(1) Develop and evaluate non-aversive interventions that reduce and
eliminate severe behavior problems exhibited by children and youth with
disabilities;
(2) Investigate the etiology of SPBs for the purpose of developing
prevention and early intervention strategies;
(3) Investigate the durability and maintenance of effective non-
aversive interventions;
(4) Investigate the effectiveness of self-management strategies;
(5) Develop and evaluate functional assessments to address SPBs in
educational and community-based settings;
(6) Develop materials and provide training to educators, community-
based program personnel, parents, and caregivers who address SPBs; and
(7) Develop and disseminate informational materials and provide
technical assistance to local and State educational agencies to address
SPBs.
In carrying out the purposes of the priority, the RRTC shall
disseminate materials and coordinate training activities with related
projects supported by the Office of Special Education Programs,
including the Regional Resource Centers and Parent Information Centers.
Proposed Priority 4: Aging With Spinal Cord Injury
Background
Persons who experience a spinal cord injury (SCI) and related
conditions are surviving in significant numbers to late middle age and
beyond. Less than fifty years ago the average life expectancy for a
spinal cord injured individual in the United States was approximately
three years post-injury; today life expectancy approaches that of the
general population (Enders, A., ``Issues and Options in Technology for
Disability and Aging,'' National Conference on Disability and Aging,
Institute for Health and Aging, San Francisco, 1986). Estimates of
spinal cord injury prevalence in America range from 180,000 to 250,000
with between 7,000 and 10,000 new spinal cord injuries each year
(National Spinal Cord Injury Statistical Center, The University of
Alabama at Birmingham, 1995). One of four individuals who previously
sustained a spinal cord injury is now at least 20 years post-onset. The
average age of a SCI survivor is now about 48 years and about 20
percent of SCI survivors are over age 60.
Many SCI survivors develop new medical, functional, and
psychological problems that threaten their independence. In addition,
many experience job loss, barriers to accessing proper health
maintenance and caregiver/personal assistance services, loss of
financial assistance, and economic hardship. Persons aging with SCI are
susceptible to multiple health maintenance problems including
cardiovascular, urinary tract infections, pressure sores, hypertension,
fractures, blood in the urine or bowel problems, diabetes, respiratory
and neurological problems (Whiteneck, G. (Ed.), Aging with a Spinal
Cord Injury, 1992). The leading medical cause of death and further
disability that affects people with SCI is now premature cardiovascular
disease of the atherosclerotic kind. Whiteneck, using data from
England, found that cardiovascular disease is now tied with genito-
urinary problems as the leading cause of death in people aging with
SCI.
Individuals aging with a SCI also experience complications as a
result of osteoporosis and lower extremity fractures (Garland, D.E.,
``Bone Mineral Density about the Knee in SCI Patients with Pathological
Fractures,'' Contemporary Orthopaedics, 1992 and Garland, D.E.,
``Osteoporosis Following SCI,'' Journal of Orthopaedic Research, 1992).
Garland discovered a high prevalence of carpal tunnel syndrome, which
increased with the length of time after injury. In addition, Sie found
an increased prevalence of general upper extremity pain and shoulder
pain with time since injury in both paraplegic and tetraplegia
individuals (Sie, I., ``Upper Extremity Pain in the Post-Rehabilitation
SCI Injured Patient,'' Archives of Physical Medicine and
Rehabilitation, 1992). Shoulder pain occurs in about 50 percent of
people with paraplegia secondary to prolonged wheelchair use. Pain,
fatigue and weakness are also commonly reported but accommodations for
them are poorly understood.
Further research is needed to determine the changes in functional
ability to perform activities of daily living (ADL) and work. Research
related to work performance and employment status indicates that ten
years after the SCI, the employment rate peaks at about 40 percent for
persons with paraplegia
[[Page 9891]]
and at 28 percent for persons with quadriplegia, and sharply declines
about 18 years after the post-injury (SCI Model Systems Annual Report,
1992). Interventions are needed to maintain the employment status of
people aging with SCI and prevent job loss due to premature aging
effects.
As people age and their functioning changes, the need for
assistance from others (i.e., family, friends, and paid caregivers)
increases. Strategies to best assist the caregiver, in turn, to help
the person who is aging with SCI need to be developed. Moreover, there
is no ``typical'' caregiver, some are spouses, some are parents, and
some are children. Fifty percent of people with SCI receive help
exclusively from their families, and an additional 19 percent receive
substantial help from their families. Living with family is the most
frequently reported living situation, occurring in over 90 percent of
cases (Nosek, M.A., ``Personal Assistance: Key to Maintaining Ability
of Persons with Physical Disabilities,'' Applied Rehabilitation
Counselor, Vol. 21, 1990).
Declining or unstable support systems for people aging with SCI are
also a major concern. Since parents of aging SCI individuals are often
elderly, they are also at risk of poor health or death. Spousal support
providers may experience ``burn-out'' and stress, or develop health
problems. There are few alternatives to the informal support system. As
individuals with SCI age, access to proper health care, especially with
the growing trend toward managed care, is becoming a bigger problem.
There is need for research on maintaining independence in the community
for people aging with SCI through both the informal and formal systems
of care.
Psychological well-being for individuals aging with SCI is also of
major concern. Depression is a very important issue requiring
additional study because of its bearing on quality of life, its
importance for overall health, and its relationship to suicide (Schulz,
R., ``Long Term Adjustment to Physical Disability: The Role of Social
Support Service of Control and Self Blame,'' Journal of Personality and
Social Psychology, 5, pgs. 1162-1172, 1985). The research indicates
that over 40 percent of people who have sustained functional changes as
a consequence of aging with SCI show high levels of distress and
depression. Pilot data on treatment are available from the NIDRR-funded
centers, but a full treatment procedure for stress and depression needs
to be developed.
Proposed Priority 4
The Secretary proposes to establish an RRTC for the purpose of
conducting research on rehabilitation techniques that assist
individuals aging with SCI to maintain employment and independence in
the community. The RRTC shall:
(1) Identify, develop, and evaluate interventions that maintain
employment for individuals aging with SCI;
(2) Identify, develop, and evaluate rehabilitation techniques that
will assist individuals aging with SCI to cope with changes in
functional abilities, changes in ADL, and the impact of these
techniques on quality of life;
(3) Investigate how formal and informal systems of care could be
improved to address the impact of problems associated with long-term
care givers and personal service assistants;
(4) Develop a program of information dissemination and training for
individuals aging with SCI and those who provide services to them;
(5) Develop regimens to minimize or take account of the impacts of
aging with SCI and develop materials that support these regimens for
individuals with SCI, their families, service providers and educators;
and
(6) Develop materials for individuals with SCI, their families,
service providers and educators that will provide a better
understanding of the natural course of SCI as persons age.
In carrying out the purposes of the priority, the RRTC shall
coordinate with all other relevant SCI research and demonstration
activities, including those sponsored by the National Center on Medical
Rehabilitation Research, RSA, Paralyzed Veterans of America, National
Spinal Cord Injury Association and NIDRR-funded SCI projects.
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: Improving the Utilization of Existing and Emerging
Rehabilitation Technology in the State Vocational Rehabilitation
Program
Background
One of the more persistent issues in the rehabilitation of
individuals with disabilities has been maximizing the use of existing
and emerging rehabilitation technology in the service settings of the
State Vocational Rehabilitation (VR) programs.
As defined in Section 7(13) of the Rehabilitation Act, as amended
(Act), rehabilitation technology means ``the systematic application of
technologies, engineering methodologies, or scientific principles to
meet the needs of and address the barriers confronted by individuals
with disabilities in areas which include education, rehabilitation,
employment, transportation, independent living and recreation'' and
includes ``rehabilitation engineering, assistive technology devices,
and assistive technology services.'' Under Section 101(a)(5)(C) of the
Act, designated VR agencies must describe in their State plan how the
State will provide a broad range of rehabilitation technology services
at each stage of the rehabilitation process. As appropriate,
rehabilitation technology services are provided to individuals with
disabilities served by State VR programs under an Individualized
Written Rehabilitation Program.
Rehabilitation technology, and information about rehabilitation
technology, is generated by a variety of sources including, but not
limited to, NIDRR-funded Rehabilitation Engineering and Research
Centers, the Assistive Technology program funded under the Technology-
Related Assistance for Individuals with Disabilities Act of 1988,
ABLEDATA, the Department of Veterans Affairs Research and Development
projects, and manufacturers in the private sector. While many of these
sources may undertake dissemination activities, too often
rehabilitation counselors and related vocational rehabilitation service
providers are unaware of existing or emerging rehabilitation
technologies, resulting in a number of problems for clients of the
State vocational rehabilitation system.
The provision of inappropriate rehabilitation technology can result
in nonuse. The nonuse of a device may lead to decreases in functional
abilities, freedom, and independence. On a
[[Page 9892]]
service delivery level, device abandonment represents ineffective use
of limited funds by Federal, State, and local government agencies,
insurers, and other provider organizations (Phillips, B. and Hongxin,
Z., ``Predictors of Assistive Technology Abandonment,'' Assistive
Technology, Vol. 5, No. 1, pg. 36, 1993).
If vocational rehabilitation personnel are unfamiliar with an
emerging technology, their clients are disadvantaged by not having
access to recent developments in the field. These developments may be
more effective and economical than existing rehabilitation technology.
Because of the costs that can be involved, the decision to utilize a
particular rehabilitation technology, even if the technology is
outdated, can be difficult to reverse or modify.
Information barriers related to rehabilitation technology also
apply to secondary students with disabilities who increasingly complete
their education with the help of assistive devices (Everson, J.,
``Using Person-centered Planning Concepts to Enhance School-to-Adult
Life Transition Planning,'' Journal of Vocational Rehabilitation, Vol.
6, 1996). In order to ensure their continued access to technical
accommodation as part of their transition to employment and independent
living, special education and vocational rehabilitation personnel
involved in their transition must have proper training and access to
current information.
Assigning inappropriate or outdated rehabilitation technology to
consumers can be avoided if vocational rehabilitation personnel are
provided with comprehensive and current information on existing and
emerging rehabilitation technology. Rehabilitation counselors and
related vocational rehabilitation service providers gain access to
information about rehabilitation technology from various sources
including, but not limited to, their pre-service and in-service
training, memberships in professional organizations, conferences, and
more recently through the information superhighway. Because the field
of rehabilitation technology is developing rapidly, and because it is a
technically diverse and complex field, it has been a challenge for
rehabilitation personnel development programs to keep pace with
rehabilitation technology. There is a growing need for dissemination of
information about rehabilitation technology, including the development
of pre-service and in-service resources, in order to promote improved
rehabilitation professional training on rehabilitation technology.
Proposed Priority 5
The Secretary proposes to establish a knowledge dissemination and
utilization project for the purpose of improving the ability of
rehabilitation professionals to more effectively use rehabilitation
technology in providing services to individuals through the State VR
Services program. The proposed D&U project must:
(1) evaluate the pre-service and in-service rehabilitation
professional training materials that address rehabilitation technology
and identify strengths and deficiencies in those materials;
(2) Based on this evaluation, develop training materials that will
improve the ability of rehabilitation counselors and related
professionals to utilize existing and emerging rehabilitation
technology;
(3) Disseminate these materials to pre-service and in-service
rehabilitation professional training programs;
(4) As needed, provide technical assistance to these pre-service
and in-service training programs to maximize the use of the materials;
and
(5) Using a variety of strategies, disseminate information about
existing and emerging rehabilitation technology to rehabilitation
counselors, special educators involved with the transition of secondary
students, and related rehabilitation professionals.
In carrying out the purposes of the priority, the proposed D&U
project must:
Coordinate with the Assistive Technology projects to avoid
duplication of effort;
Develop information about existing and emerging
rehabilitation technology from a wide variety of sources; and
On a regular basis, update the information and materials
that are developed.
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
3423, Mary Switzer Building, 330 C Street S.W., Washington, D.C.,
between the hours of 8:00 a.m. and 3:30 p.m., Monday through Friday of
each week except Federal holidays. APPLICABLE PROGRAM REGULATIONS: 34
CFR Parts 350, 351, and 352.
Program Authority: 29 U.S.C. 760-762.
Dated: February 27, 1997.
(Catalog of Federal Domestic Assistance Numbers: 84.133A, Research
and Demonstration Projects, 84.133B, Rehabilitation Research and
Training Center Program, 84.133D, Knowledge Dissemination and
Utilization Program)
Judith E. Heumann,
Assistant Secretary for Special Education and Rehabilitative Services.
[FR Doc. 97-5241 Filed 3-3-97; 8:45 am]
BILLING CODE 4000-01-P
