[Federal Register Volume 62, Number 245 (Monday, December 22, 1997)]
[Notices]
[Pages 66922-66929]
From the Federal Register Online via the Government Publishing Office [www.gpo.gov]
[FR Doc No: 97-33259]
[[Page 66921]]
_______________________________________________________________________
Part IV
Department of Education
_______________________________________________________________________
National Institute on Disability and Rehabilitation Research; Proposed
Funding Priorities for Fiscal Years 1998-1999 for Certain Centers and
Projects; Notice
Federal Register / Vol. 62, No. 245 / Monday, December 22, 1997 /
Notices
[[Page 66922]]
DEPARTMENT OF EDUCATION
National Institute on Disability and Rehabilitation Research;
Notice of Proposed Funding Priorities for Fiscal Years 1998-1999 for
Certain Centers and Projects
SUMMARY: The Secretary proposes funding priorities for four
Rehabilitation Research and Training Centers (RRTCs) and two Disability
and Rehabilitation Research Projects (DRRPs) under the National
Institute on Disability and Rehabilitation Research (NIDRR) for fiscal
years 1998-1999. The Secretary takes this action to focus research
attention on areas of national need. These priorities are intended to
improve rehabilitation services and outcomes for individuals with
disabilities.
DATES: Comments must be received on or before January 21, 1998.
ADDRESSES: All comments concerning these proposed priorities should be
addressed to Donna Nangle, U.S. Department of Education, 600 Maryland
Avenue, S.W., room 3418, Switzer Building, Washington, D.C. 20202-2645.
Comments may also be sent through the Internet: comment@ed.gov
You must include the term Disability and Rehabilitation Research
Projects and Centers in the subject line of your electronic message.
FOR FURTHER INFORMATION CONTACT: Donna Nangle. Telephone: (202) 205-
5880. Individuals who use a telecommunications device for the deaf
(TDD) may call the TDD number at (202) 205-2742. Internet:
Donna__Nangle@ed.gov.
Individuals with disabilities may obtain this document in an
alternate format (e.g., Braille, large print, audiotape, or computer
diskette) on request to the contact person listed in the preceding
paragraph.
SUPPLEMENTARY INFORMATION: This notice contains proposed priorities
under the Disability and Rehabilitation Research Projects and Centers
Program for four RRTCs related to: secondary conditions of spinal cord
injuries (SCI); neuromuscular diseases (NMD); multiple sclerosis (MS);
and community integration for persons with traumatic brain injury
(TBI). The notice also contains proposed priorities for two Disability
and Rehabilitation Research Projects related to: dissemination and
utilization of research information to promote independent living; and
supported living and choice for persons with mental retardation.
These proposed priorities support the National Education Goal that
calls for every adult American to possess the skills necessary to
compete in a global economy.
The authority for the Secretary to establish research priorities by
reserving funds to support particular research activities is contained
in sections 202(g) and 204 of the Rehabilitation Act of 1973, as
amended (29 U.S.C. 761a(g) and 762).
The Secretary will announce the final priorities in a notice in the
Federal Register. The final priorities will be determined by responses
to this notice, available funds, and other considerations of the
Department. Funding of a particular project depends on the final
priority, the availability of funds, and the quality of the
applications received. The publication of these proposed priorities
does not preclude the Secretary from proposing additional priorities,
nor does it limit the Secretary to funding only these priorities,
subject to meeting applicable rulemaking requirements.
Note: This notice of proposed priorities does not solicit
applications. A notice inviting applications under this competition
will be published in the Federal Register concurrent with or
following the publication of the notice of final priorities.
Rehabilitation Research and Training Centers
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.
Description of Rehabilitation Research and Training Centers
RRTCs are operated in collaboration with institutions of higher
education or providers of rehabilitation services or other appropriate
services. RRTCs serve as centers of national excellence and national or
regional resources for providers and individuals with disabilities and
the parents, family members, guardians, advocates or authorized
representatives of the individuals.
RRTCs conduct coordinated, integrated, and advanced programs of
research in rehabilitation targeted toward the production of new
knowledge to improve rehabilitation methodology and service delivery
systems, to alleviate or stabilize disabling conditions, and to promote
maximum social and economic independence of individuals with
disabilities.
RRTCs provide training, including graduate, pre-service, and in-
service training, to assist individuals to more effectively provide
rehabilitation services. They also provide training including graduate,
pre-service, and in-service training, for rehabilitation research
personnel 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.
RRTCs disseminate materials in alternate formats to ensure that
they are accessible to individuals with a range of disabling
conditions.
NIDRR encourages all Centers to involve individuals with
disabilities and individuals from minority backgrounds as recipients of
research training, as well as clinical training.
The Department is particularly interested in ensuring that the
expenditure of public funds is justified by the execution of intended
activities and the advancement of knowledge and, thus, has built this
accountability into the selection criteria. Not later than three years
after the establishment of any RRTC, NIDRR will conduct one or more
reviews of the activities and achievements of the Center. In accordance
with the provisions of 34 CFR 75.253(a), continued funding depends at
all times on satisfactory performance and accomplishment.
Proposed General Requirements
The Secretary proposes that the following requirements apply to
these RRTCs pursuant to these absolute priorities unless noted
otherwise. An applicant's proposal to fulfill these
[[Page 66923]]
proposed requirements will be assessed using applicable selection
criteria in the peer review process. The Secretary is interested in
receiving comments on these proposed requirements:
Each RRTC must provide: (1) Training on research methodology and
applied research experience; and (2) training on knowledge gained from
the Center's research activities to persons with disabilities and their
families, service providers, and other appropriate parties.
Each RRTC must develop and disseminate informational materials
based on knowledge gained from the Center's research activities, and
disseminate the materials to persons with disabilities, their
representatives, service providers, and other interested parties.
Each RRTC must involve individuals with disabilities and, if
appropriate, their representatives, in planning and implementing its
research, training, and dissemination activities, and in evaluating the
Center.
The RRTC must conduct a state-of-the-science conference in the
third year of the grant and publish a comprehensive report on the final
outcomes of the conference in the fourth year of the grant.
Priorities
Under 34 CFR 75.105(c)(3) the Secretary proposes to give an
absolute preference to applications that meet the following priorities.
The Secretary proposes to fund under this competition only applications
that meet one of these absolute priorities.
Proposed Priority 1: Secondary Conditions of Spinal Cord Injuries
Background
There are approximately 10,000 new cases of SCI each year and the
prevalence of SCI is estimated between 183,000 and 230,000 persons
(University of Alabama-Birmingham, ``Facts and Figures at a Glance,''
Spinal Cord Injury Factsheet, August, 1997). The etiology of SCI has
been very well documented and the medical characterization of this
condition is well established (Maynard, F. M., et al., ``International
Standards for Neurological and Functional Classification of Spinal Cord
Injury--American Spinal Cord Injury Association'' Spinal Cord, 35(5),
pgs. 266-274, May, 1997). Past medical advances have improved the
probability of surviving SCI, and ongoing developments and improvements
in clinical care have increased the life expectancy and quality of life
of persons with SCI (Ditunno, J. F. and Formal,
C. S., ``Chronic Spinal Cord Injury,'' New England Journal of Medicine,
330(8), pgs. 550-556, February, 1994). However, the life expectancy of
individuals with SCI is still lower than the general population, and
people who are living with SCI continue to be at higher risk than the
general population for a number of secondary conditions. For the
purposes of this priority, a secondary condition is a condition that is
causally related to a disabling condition (i.e., occurs as a result of
the primary disabling condition) and that can be pathological, an
impairment, a functional limitation, or an additional disability (Pope,
A. M. and Tarlov,
A. R., ``Prevention of Secondary Conditions,'' Disability in America,
pgs. 214-241, 1991).
Pressure ulcers, respiratory complications, urinary tract
infections (UTIs), pain, and obesity are commonly reported secondary
conditions of SCI (Lemons, V.R. and Wagner, F.C., Jr., ``Respiratory
Complications After Cervical Spinal Cord Injury,'' Spine, 9(20), pgs.
2315-2320, 1994; Anson,
C. A. and Shepherd, C., ``Incidence of Secondary Complication in Spinal
Cord Injury,'' International Journal of Rehabilitation Research, 19(1),
pgs. 55-66, March, 1996). Depression in SCI is also often identified as
a secondary condition (Elliott, T. R. and Frank, R. G., ``Depression
Following Spinal Cord Injury,'' Archives of Physical Medicine and
Rehabilitation, Vol. 77, pgs. 816-823, 1996). Continued research
efforts directed toward the prevention and treatment of secondary
conditions of persons with SCI will improve their health and well-
being.
Despite past efforts, pressure ulcers remain a daunting problem
with respect to both prevention and treatment. Most approaches to
pressure ulcer management emphasize prevention (Ditunno, J. F., op.
cit.). There is little systematic evidence on how individuals with SCI
manage a pressure ulcer once one develops (Fuhrer, M. J., et al.,
``Pressure Ulcers in Community-Resident Persons with Spinal Cord
Injury: Prevalence and Risk Factors,'' Archives of Physical Medicine
and Rehabilitation, 74, pgs. 1172-1177, 1993).
Respiratory-related conditions have now replaced UTIs as the major
cause of death in the SCI population, particularly among individuals
with cervical level injuries (University of Alabama-Birmingham, op.
cit.). Pneumonia continues to be one of the most common secondary
conditions. Secretion management is often problematic due to impaired
cough (Ditunno, J. F. and Formal, C. S., op. cit.). The effectiveness
of current therapeutic interventions to reduce the incidence of
respiratory conditions appears to be marginal (Lemons, V. R. and
Wagner, F. C., Jr., op. cit.).
Urinary tract infections are a common secondary condition in SCI.
Antibiotic prophylaxis is not generally recommended. Other possible
strategies, such as vaccination, immunotherapy, and the use of receptor
analogs have been suggested, but there is not yet sufficient data on
the effectiveness (Galloway, A., ``Prevention of Urinary Tract
Infection in Patients with Spinal Cord Injury--A Microbiological
Review,'' Spinal Cord, 35(4), pgs. 198-204, April, 1997). There are
possible psycho-social-vocational factors that impact bladder
management programs (NIDRR 1992 Consensus Statement, ``The Prevention
and Management of Urinary Tract Infections Among People with Spinal
Cord Injuries,'' Journal of American Paraplegia Society, 15(3), pgs.
194-204, July, 1992).
Pain is a secondary condition that affects a significant number of
persons with SCI (Yezierski, R. P., ``Pain Following Spinal Cord
Injury: the Clinical Problem and Experimental Studies,'' Pain, 68(2-3),
pgs. 185-194, 1996). Previous research has resulted in a number of
classification schemes for SCI pain; however, there is no standardized
classification system, limiting comparability of findings from the
literature. The numerous individual variations in pain as a secondary
condition accompanying SCI impede research progress in the alleviation
of pain (Stover, S. L., et al., ``Management of Neuromusculoskeletal
System,'' Spinal Cord Injury: Clinical Outcomes from Model Systems,
Chapter 8, pgs. 154-155, 1995).
Obesity can contribute to health-related problems in the general
population. Obesity in SCI, particularly morbid obesity, is more likely
to contribute to health-related problems. This condition is closely
tied to nutritional status and the ability to engage in physical
activity or exercise. Limitations on the latter are likely to
contribute significantly to the problems stemming from this secondary
condition (Blackmer, J. and Marshall, S., ``Obesity and Spinal Cord
Injury: An Observational Study,'' Spinal Cord, 35(4), pgs. 245-247,
April, 1997).
Depression is more common among persons with SCI than among the
general population. There is some evidence that depression is higher
among persons whose SCI is of relatively short duration compared to
others who have had a longer time to
[[Page 66924]]
adjust (Steins, S. A., et al., ``Spinal Cord Injury Rehabilitation:
Individual Experience, Personal Adaptation, and Social Perspectives,''
Archives of Physical Medicine and Rehabilitation, Vol. 78, March,
1997). Proper diagnosis and treatment of depression in persons with SCI
has not yet been well established (Elliott, T. R. and Frank, R. G., op.
cit.). Prevention and treatment for depression and other psychosocial
adjustment problems may include increasing opportunities for social
interactions through community participation (Rintala, D. H., et al.,
``The Relationship Between the Extent of Reciprocity with Social
Supporters and Measures of Depressive Symptomatology, Impairment,
Disability, and Handicap in Persons with Spinal Cord Injury,''
Rehabilitation Psychology, 39(1), pgs. 15-27, 1994).
There is a linkage between maintaining the health of persons with
SCI and the prevention of secondary conditions. Health maintenance
activities may include, but are not limited to, following accepted
medical protocols, proper diet, weight control, and exercise. Persons
with SCI are increasingly realizing the importance of and seeking
access to health maintenance activities (Edwards, P., ``Health
Promotion Through Fitness for Adolescents and Young Adults Following
Spinal Cord Injury,'' SCI Nursing, 13(3), pgs. 69-73, September, 1996).
Because of the differences in exercise tolerance among different
levels of SCI, one uniform exercise protocol can not be applied to all
individuals. Exercise options for persons with SCI will be expanded
when appropriate exercise protocols are developed for the different
levels of injury (Rimmer, J. H., ``Fitness and Rehabilitation Programs
for Special Populations,'' Brown & Benchmark, Madison, WI, Chapter 7,
1994). Little is known about the synergistic effects of exercise, diet,
and nutrition. Questions remain as to whether and how these lifestyle
factors work together to promote health and prevent secondary
conditions.
The availability and dissemination of information about this injury
tends to be concentrated in speciality areas. This problem can be
frustrating to newly-injured individuals and their family members.
Rapidly accessing the most up-to-date clinical information can also be
problematic for non-specialty health professionals.
Proposed Priority 1
The Secretary proposes to establish an RRTC on Secondary Conditions
of Spinal Cord Injuries to improve general health, well-being, and
community integration of persons with spinal cord injury. The RRTC
shall:
(1) Investigate and evaluate interventions to prevent and treat
secondary medical conditions, including but not necessarily limited to
pressure ulcers, respiratory complications, UTIs, pain, and obesity;
(2) Investigate and evaluate interventions to prevent and treat
depression; and
(3) Develop and evaluate exercise protocols, stress management
techniques and diet and nutrition regiments.
In carrying out the purposes of the priority, the RRTC must
coordinate with all other relevant SCI research activities, including
the NIDRR-sponsored Model SCI Systems, those sponsored by the National
Center for Medical Rehabilitation Research, the Centers for Disease
Control, and NIDRR's RRTCs on Aging with A Disability, Personal
Assistance Services, and Managed Care.
Proposed Priority 2: Neuromuscular Diseases
Background
Neuromuscular disease is a taxonomic category that describes
diseases of the peripheral neuromuscular system, both acquired and
hereditary. This category encompasses diseases such as amyotrophic
lateral sclerosis, post-polio, Guillan-Barre, muscular dystrophy,
myasthenia gravis, and other muscular atrophies and myopathies. NMDs
affect approximately 400,000 children and adults in the United States
(LaPlante, M., et al., Disability in the United States: Prevalence and
Causes, 1992). Conditions associated with these disorders include
progressive weakness, limb contractures, spine deformity, and impaired
pulmonary function. Cardiac involvement and intellectual impairment
occur with some NMDs. The progression of these degenerative diseases
takes three stages: ambulatory, wheelchair, and prolonged survival
(Bach, J. R. and Lieberman, J. S., ``Rehabilitation of the Patient with
Disease Affecting the Motor Unit,'' Rehabilitation Medicine: Principles
and Practice, pg. 1099, 1993). Past research efforts have focused on
documenting the impairment and disability profiles of neuromuscular
disease as well as on mitigating the functional consequences of NMD.
Functional independence and community integration continue to challenge
persons with NMDs.
Among the functional independence issues that affect persons with
NMD are preserving respiratory function, maintaining muscle strength,
assuring good nutrition, and combating muscle fatigue. Respiratory
insufficiency due to progressive muscle wasting is one of the leading
causes of illness and death among persons with NMDs (Bates, D.,
Respiratory Function in Disease, pgs. 371-379, 1989). For persons with
NMDs, maintaining or improving muscle strength is a major functional
concern. The relationships among conditioning exercise, functional
strength, and fatigue is not well understood in this population. For
example, exercise has been shown to be effective in improving strength
and endurance at particular points in the disease progress, but many
questions remain and the optimal use of exercise across different NMD
categories is not known (Brinkmann, J. R., and Ringel, S. P.,
``Effectiveness of Exercise in Progressive Neuromuscular Disease,''
Journal of Neurological Rehabilitation, Vol. 5, pgs. 195-199, 1991).
Finally, feeding problems in patients with NMDs are frequently
underestimated and poorly analyzed (Willig, T. N., et al., ``Swallowing
Problems in Neuromuscular Disorders,'' Archives of Physical Medicine
and Rehabilitation, Vol. 75, No. 11, pgs. 1175-1181, 1994).
Persons with NMDs must maintain functional independence to maximize
their ability to participate in home, work, educational, recreational,
and other community activities. For instance, respiratory problems
often require mechanical ventilation. Home ventilation has been shown
to be useful for a growing number of patients with NMDs (Winterholler,
M., et al., ``Recommendation of Bavarian Muscle Centers of the German
Neuromuscular Disease Society for Home Ventilation of Neuromuscular
Diseases of Adult Patients,'' Nervenarzt, Vol. 68, No. 4, pgs. 351-357,
1997). Despite its technical simplicity, home ventilation leads to a
number of social, medical and infrastructural problems (Paraplegia,
Vol. 31, pgs. 93-101, 1993).
Many persons with NMDs have had limited opportunity for educational
and work experiences. Research has demonstrated the ``alteration of
cognitive functions'' in some NMD diagnoses, creating special
challenges to pursuing education (Fardeau-Gautier, M. and Fardeau, M.,
``Socioeconomic Aspects of Neuromuscular Diseases,'' Myology: Basic and
Clinical, 1994). Previous research found a significant relationship
between psychosocial adjustment and unemployment for some persons with
NMD (Fowler, W. M., Jr., ``Employment Profiles in Neuromuscular
Diseases,'' American Journal of Physical Medicine &
[[Page 66925]]
Rehabilitation, Vol. 76, No. 1, pgs. 26-37, 1997).
In addition to issues of functional capacity and community
integration, there is an emerging policy issue related to diagnosis of
NMDs. Rapid development in genetic knowledge and technologies has
increased the ability to test asymptomatic NMD individuals for late-
onset diseases, disease susceptibilities, and carrier status. Genetic
criteria may be replacing diagnostic and clinical classification
systems as a method of identifying NMDs (Fowler, W. M., Jr.,
``Impairment and Disability Profiles of Neuromuscular Diseases,''
American Journal of Physical Medicine & Rehabilitation, Vol. 74, No. 5,
pg. S61, 1995). These developments raise ethical, legal and financial
issues related to appropriate timing for tests and communication of
results (``American Society of Human Genetics and American College of
Medical Genetics Report--Points to Consider: Ethical, Legal, and
Psychosocial Implications of Genetic Testing in Children and
Adolescents,'' American Journal of Human Genetics, Vol. 57, pgs. 1233-
1241, 1995).
Because of the number of very rare diseases that are included in
the proposed World Federation of Neurology Classifications of NMD and
the low incidence and prevalence of the more well-known NMDs, the
availability and dissemination of information about these diseases is
problematic. This difficulty is characteristic of cases where there is
both a limited amount of information and a very small audience. This
problem can be frustrating to newly-diagnosed individuals and their
family members. Rapidly accessing the most up-to-date clinical
information can also be problematic for the non-specialist physicians,
as evidenced by the well-known difficulty in diagnosing these diseases
(Swash, M. and Schwartz, M. S., Neuromuscular Diseases: A Practical
Approach to Diagnosis and Management, pg. 3, 1988).
Proposed Priority 2
The Secretary proposes to establish an RRTC on NMDs to promote the
functional independence and community integration of persons with NMDs.
The RRTC shall:
(1) Investigate and evaluate interventions to preserve functional
capacity;
(2) Investigate and evaluate techniques for enhancing community
integration;
(3) Examine the risks and benefits related to the use of genetic
testing; and
(4) Establish and maintain a clearinghouse on NMDs.
In carrying out the purposes of the priority, the RRTC shall
coordinate with research activities by the National Institute on
Neurological Disorders and Stroke, and other related NIDRR-funded
projects relevant to the priority.
Proposed Priority 3: Multiple Sclerosis
Background
Multiple sclerosis is a disease capable of producing significant
disability, particularly in the young adult population. The most
frequent age of onset is between 20 and 45 years, with a mean onset age
of 33. The female to male ratio is nearly 2:1 and the white to non-
white ratio is also nearly 2:1. The total population of individuals
with MS in the United States is estimated at 250,000-350,000. The
causes of MS are unknown, although autoimmune, viral, genetic, and
environmental factors are considered to have potential causal
significance (Smith, C. & Schapiro, R., ``Neurology,'' Multiple
Sclerosis, pg. 7, 1996).
Multiple Sclerosis randomly attacks the central nervous system and
may manifest itself over several decades in a wide range of
disabilities including, but not limited to, inability to walk, loss of
bowel and bladder control, blindness, mild alteration of sensation,
paralysis of limbs, impaired speech, sexual dysfunction, extreme
fatigue, poor coordination, spasticity, and cognitive dysfunction. The
course of MS is unpredictable. The disease may wax and wane.
Significant manifestation can be brought on by heat, overwork, or a
common cold and followed by return to a state with little evidence of
active disease. Sometimes there are manifestations with no apparent
trigger. A small group of those with the disease experience continued
evolving neurological deficits. Generally, progression, severity and
specific symptoms cannot be foreseen.
Various interventions may alleviate some of the manifestations.
While medications may slow the disease course, there is no cure for MS.
Coping and planning can be difficult and exhausting for those who make
continual adjustments in daily activity. Work schedules or family plans
may be disrupted by the sudden onset of fatigue. Driving and
independent activity may be difficult due to MS-related impairments.
Bladder difficulties may cause a person to avoid activities.
Maintaining healthy lifestyle habits can assist persons with MS to
maintain maximum function despite the disease. Exercise can strengthen
muscles when possible or can help maintain muscle tone for those that
are affected, although the potential for overexercise must be
understood. Adequate rest is critical for persons with MS and
relaxation techniques can be aids as well (Chan, A., ``Physical
Therapy,'' Multiple Sclerosis, pg. 87, 1996). Various diets have been
suggested, as have vitamin and nutritional supplements. However, the
evidence supporting the value of those measures is inconclusive.
Alcohol or substance abuse can be problems for persons with the disease
whose neurological deficits have caused decreased tolerance. Any
substance that places extra strain on the already-impaired nervous
system must be used with extreme caution. Drug interactions can be a
danger if the person is on prescribed medication (Lechtenberg, R.,
Multiple Sclerosis Fact Book, pg. 171, 1989).
It is difficult to assess the employment status of persons with MS.
This is due in part to the nature of the disease and its variable
impact on individuals' ability to work. Information on the employment
status of persons with MS may be available through a secondary analysis
of databases such as the 1994-95 National Health Interview Survey
Disability Supplement. Persons with MS may require unique work
accommodations such as sustained cooler environments, rest breaks, and
flexible work schedules.
Rehabilitation techniques are available to assist the person with
MS in daily life, including at the workplace. Medications can be
effective for treating fatigue, bladder, bowel, or sexual difficulties.
Physical therapists commonly recommend mobility aids and devices to
help with visual impairments or difficulties using the hands. At times,
as when mobility impairments occur, there may be hesitation or
unwillingness on the part of the person with MS, physicians, or health
care coverage providers, to use assistive technologies, believing that
the problem will go away (Iezzoni, L., ``When Walking Fails,'' The
Journal of the American Medical Association, Vol. 276, No. 19, pg.
1609, 1996).
While the life expectancy for persons with MS is nearly identical
to that of healthy individuals, various manifestations of MS can be
expected over the course of decades. As a person with MS ages,
depression, cognitive dysfunction, and other emotional or physical
health problems may play increasingly larger roles. Treatment and
rehabilitation modalities may be different if a manifestation is caused
by aging, as opposed to MS.
[[Page 66926]]
NIDRR is particularly interested in receiving public comments on
whether this RRTC should pursue two research questions related to
rehabilitation interventions: (1) the extent to which women with MS
require unique rehabilitation interventions, and (2) whether
alternative models of providing rehabilitation interventions may be
needed for persons of different cultural, economic, minority, ethnic or
geographic backgrounds.
Proposed Priority 3
The Secretary proposes to establish an RRTC on MS to promote the
health and wellness, and improve the functioning and employment status
of persons with MS. The RRTC shall:
(1) Identify, develop, and evaluate health promotion and wellness
activities, including those that address substance abuse.
(2) Identify, develop, and evaluate rehabilitation techniques to
manage and improve functioning, including those that address coping
with the uncertain course of MS and depression, stress, and cognitive
dysfunction;
(3) Investigate the employment status of persons with MS;
(4) Identify, develop, and evaluate workplace accommodations; and
(5) Investigate the interaction between aging and MS.
In carrying out the purposes of the priority, the RRTC shall
collaborate with the Consortium of MS Centers and the RRTC on Substance
Abuse.
Proposed Priority 4: Community Integration for Persons with Traumatic
Brain Injury
Background
Each year approximately 1.9 million Americans experience traumatic
brain injuries (Collins, J. F., ``Types of Injuries by Selected
Characteristics: US 1985-1987,'' National Center for Health Statistics,
Vital Health Stat, 10 (175), 1990). Brain injury is frequently a
childhood injury, and incidence is highest among youth and young
adults, particularly males (NIDRR Rehabilitation Research and Training
Center, University of California, San Francisco, Disability Statistics
Abstract, No. 14, November, 1995). The number of people surviving brain
injuries has increased significantly over the last 25 years due to
improved emergency medical services and advances in acute care.
Community integration is the primary aim of rehabilitation after
serious trauma. For the purposes of this priority, community
integration is defined as integration into home-like settings, social
networks, and productive activities such as employment, school, or
volunteer work (Willer, B., et al., ``Assessment of Community
Integration for Traumatic Brain Injury,'' Journal of Head Trauma
Rehabilitation, Vol. 8, No. 2, pgs. 75-87, June, 1993). Living
independently, pursuing avocational activities, volunteering,
educational endeavors, employment, and participation in social
activities outside the home are important community integration
outcomes.
Sequelae to TBI include problems of cognition resulting in memory
and learning difficulties and personality and behavior problems,
including irritability and impulsivity, that impact on community
integration outcomes. In addition, individuals with severe TBI often
experience fatigue, limited attention span, information processing
problems, visual perception difficulties, and depression. Furthermore,
alcohol use at the time of injury, as well as pre-or post-injury heavy
drinking, has been related to worse post-injury outcomes (Kreutzer, J.
S., ``A Prospective Longitudinal Multi-center Analysis of Alcohol Use
Patterns Among Persons with TBI,'' The Journal of Head Trauma
Rehabilitation, Vol. 11, No. 5, pg. 58, October, 1996).
Persons who experience the physical and mental consequences of TBI
require a variety of programs and services to be successfully
reintegrated in the community. These resources may include schools,
libraries, recreation centers, health facilities, drug treatment
programs, housing, transportation, and police and law enforcement
services. Often these programs and services are not fully accessible to
this population because their needs are not known or recognized.
The sequelae of TBI contribute to significant difficulties
obtaining and retaining employment post-injury. Because of the
demographics of head injury, some of the survivors may not have worked
prior to the injury. Those who were employed face challenges in seeking
to return to work. Despite increasing emphasis on vocational
rehabilitation, investigation of long-term outcomes has indicated
unemployment rates ranging from 34 percent to 75 percent at two to 15
years after injury. A recent longitudinal investigation revealed
unemployment rates for rehabilitation patients as high as 76 percent
during the first four years after injury (Sander, A. M.,
``Neurobehavioral Functioning, Substance Abuse, and Employment after
Brain Injury: Implications for Vocational Rehabilitation,'' Journal of
Head Trauma Rehabilitation, 12 (5), pgs. 28-41, 1997). Past research
has examined the efficacy of supported employment and other strategies
for improving employment outcomes for individuals with TBI. Successful
strategies consider the structure and culture of the workplace in
linking these to the needs of individuals with TBI to succeed in
employment settings (Wehman, P. H., et al., ``Return to Work for
Persons with Severe Traumatic Brain Injury: A Data-based Approach to
Program Development,'' Journal of Head Trauma Rehabilitation, 10 (1),
pgs. 27-39, 1995).
The prevalence of TBI in children is documented by the National
Pediatric Trauma Registry located at the RRTC on Rehabilitation and
Childhood Trauma. Most injured children are one to 14 years of age.
Children with disabilities face numerous problems transitioning from
rehabilitation to educational settings. Educators may be unaware of the
impact of TBIs on school performance and uncertain of effective
educational programming. Establishing a stronger link between hospitals
and school professionals is an essential step toward improving
educational and functional outcomes (Farmer, J. E., et al.,
``Educational Outcomes in Children with Disabilities; Linking Hospitals
and Schools,'' NeuroRehabilitation, Vol. 5, No. 1, pgs. 49-56, 1995).
Families of people with TBI exhibit high levels of distress,
depression and anxiety. As a result, they may experience isolation and
diminished social interaction and diminished ability to make decisions
regarding medical, ethical, and financial issues. Even 15 years post-
injury, family members of persons with TBI report tension, friction,
and distress (Gervasio, A. H., ``Kinship and Family Members''
Psychological Distress after TBI: A Large Sample Study,'' The Journal
of Head Trauma Rehabilitation, 12(3), pgs. 14-16, 1997).
Because of improved treatment and increased survival rates, many
more people with TBI are living to middle age and beyond. For people
with TBI who live with their families, both their aging and that of the
caregivers may create problems. This is especially true for those
people who live with their parents following head injury. Shortages of
affordable and accessible housing, personal assistance services, and
respite care may pose threats to community integration and require
additional community resources.
Proposed Priority 4
The Secretary proposes to establish an RRTC on Community
Integration of Persons with TBI to assist families to
[[Page 66927]]
cope, and to improve community resources, employment outcomes, and
educational programming. The RRTC shall:
(1) Identify and evaluate model programs and services that support
community integration;
(2) Identify, develop, and evaluate strategies to improve
employment outcomes, including obtaining initial employment and
successful return-to-work;
(3) Identify and evaluate effective practices that link
rehabilitation and education professionals to facilitate identification
and appropriate educational programming for children;
(4) Identify and evaluate techniques to assist families to cope;
and
(5) Investigate the impact of aging on community integration;
In carrying out the purposes of the priority, the RRTC must:
Coordinate research efforts with the TBI Model Systems
projects, other NIDRR TBI projects and centers, and the RRTC on
Substance Abuse; and
Address the needs of persons with TBI who are substance
abusers.
Disability and Rehabilitation Research Projects
Authority for Disability and Rehabilitation Research Projects
(DRRPs) is contained in section 202 of the Rehabilitation Act of 1973,
as amended (29 U.S.C. 761a). DRRPs carry out one or more of the
following types of activities, as specified in 34 CFR 350.13--350.19:
research, development, demonstration, training, dissemination,
utilization, and technical assistance. Disability and Rehabilitation
Research Projects develop methods, procedures, and rehabilitation
technology that maximize the full inclusion and integration into
society, employment, independent living, family support, and economic
and social self-sufficiency of individuals with disabilities,
especially individuals with the most severe disabilities. In addition,
DRRPs improve the effectiveness of services authorized under the
Rehabilitation Act of 1973, as amended.
Proposed Priority 5: Improving Research Information Dissemination and
Utilization to Promote Independent Living
Background
One of the persistent concerns in the area of knowledge
dissemination and utilization is the gap between information generated
from disability and rehabilitation research and its utilization by
persons with disabilities in their efforts to live independently in the
community. Persons with disabilities can draw from a wealth of
information derived from research, such as universal design concepts,
consumer-directed personal assistance strategies, the availability of
assistive technology, peer counseling techniques, housing options, and
self-care techniques. This information can help provide persons with
disabilities with the knowledge to exercise control over their lives,
reduce their reliance on others in making decisions, perform everyday
activities, and participate more fully in community life.
To generate baseline data on information dissemination related to
independent living, the National Center for the Dissemination of
Disability Research (NCDDR) conducted a nationwide survey asking
persons with disabilities about their perceptions of the usefulness of
research-based disability information, their knowledge of where to
obtain that information, and their current modes of receiving
information. Seventy-two percent of survey respondents affirmed that
disability research information is useful to them. Twenty percent
reported that they do not know if it is useful to them, and eight
percent responded that the information is not useful. The survey also
asked the respondents if they knew how to find information from
disability research. Forty-eight percent responded they did, and 32
percent responded that they did not know how to find the information
(NCDDR, ``Research Exchange,'' Vol. 2, No. 4, 1997).
Even if research information is in the public domain, it may not be
accessible to persons with disabilities. Highly technical language,
obscure journal articles, and under-publicized or prohibitively
expensive conference presentations exemplify some of the barriers that
persons with disabilities face in their efforts to access research
information. There may also be physical barriers when research
information is not available in alternate formats (e.g., braille, large
print, tape recording) for persons with sensory disabilities.
NIDRR has funded information dissemination and utilization efforts
related to living independently in the community, using a variety of
techniques, media, and dissemination strategies. NIDRR also
disseminates information through national information databases and
dissemination programs, such as the National Rehabilitation Information
Center (NARIC) and ABLEDATA, a database that contains information on
more than 22,000 assistive devices. Many Centers for Independent Living
(CILs) provide information and referral activities both in person, in
print, and electronically. In addition, there are fully established
consumer-run publications, television networks, electronic bulletin
boards, and world wide web pages that provide independent living
information.
The Internet is a primary medium for the dissemination of
disability information. The Internet allows this information to be
available to persons with disabilities in daily life settings, rather
than requiring travel to workshops and conferences. The NCDDR survey
showed that over 50 percent of the persons with disabilities living
independently indicated that they have never used the Internet to
obtain information, 25 percent reported using it often or very often.
Although many persons with disabilities do not currently own
computers or contract with Internet provider services themselves, many
institutions, such as public libraries, churches, or places other than
employment or educational sites are increasingly providing alternate
points of free access. Also, the decreasing costs of web TV and other
accessing equipment are expected to make this resource more universally
available in the future.
Proposed Priority 5
The Secretary proposes to establish a DRRP on Improving Research
Information Dissemination and Utilization to Promote Independent
Living. The DRRP shall:
(1) Using the NCDDR survey results as baseline information, further
assess the use of research information to promote independent living;
(2) Identify the barriers to increased use of research information
by persons with disabilities;
(3) Based on the input of persons with disabilities, identify
research that promotes independent living;
(4) Develop and implement strategies to disseminate research
information to promote independent living, using a variety of
innovative methods and media;
(5) Develop and disseminate strategies that other information
providers, such as CILs, NIDRR-funded grantees, and consumer
publications, can use to increase the utilization of research to
promote independent living, and provide technical assistance to those
entities to increase the dissemination and utilization of this
information; and
(6) Develop and implement strategies to assist persons with
disabilities to increase their use of existing and future information
technologies such as the Internet.
[[Page 66928]]
In carrying out the purposes of the priority, the DRRP must:
Include information and activities that feature concepts
of consumer choice, independence, personal autonomy and self-direction;
and
Coordinate activities with the NCDDR.
Proposed Priority 6: Supported Living and Choice for Persons With
Mental Retardation
Background
Personal autonomy and choice are primary rehabilitation goals for
persons with mental retardation. Supported living has emerged as a
viable approach toward achieving these goals. In order for the
potential impact of supported living to be realized, information on
supported living must be provided to a wide array of parties involved
with promoting choice and community living for persons with mental
retardation.
Based on the National Health Interview Survey on adults living in
the general household population and surveys of people in formal
residential support programs, about .78 percent or 1,250,000 of the
adult population of the U.S. can be identified as being limited in a
major life activity and having a primary or secondary condition of
mental retardation.
NIDRR has supported research and demonstrations in the area of
mental retardation and developmental disabilities since 1965.
Throughout this time, researchers have addressed issues involving
deinstitutionalization, mainstreaming, transition from school to work,
supported employment and the overall supports persons with mental
retardation and developmental disabilities need to live as
independently as possible in the community.
Supported living refers to the development and provision of
assistance, including natural supports, to enable persons with mental
retardation to live in settings and participate in activities that
contribute to their personal goals and quality of life (Abery, B. H.,
et al., ``Research on Community Integration of Persons with Mental
Retardation and Related Conditions: Current Knowledge, Emerging
Challenges and Recommended Future Directions,'' Prepared for the NIDRR
Long Range Planning Process, pg. 4, May, 1996). Supported living
intends to increase control and choice of services and supports that
persons with mental retardation receive.
Access to community services and community supports varies greatly
by State. Information on trends in supported community living and
innovative models of successful community living can assist States to
initiate and improve effective services. In addition to parents and
family members, direct service personnel such as group home staff,
foster family members and job coaches, are primary sources of support
and services for persons with mental retardation living in the
community.
In the past decade, there has been growing concern about
recruitment and retention of direct service personnel. Research has
shown high turnover rates of between 55 percent and 73 percent annually
(Braddock, D., & Mitchell, D., ``Residential Services and Developmental
Disabilities in the United States: A National Survey of Staff
Compensation, Turnover, and Related Issues,'' American Association on
Mental Retardation, Washington, DC, 1992). In order to attract and
retain competent direct service personnel, service providers must
provide staff with information and training on effective and innovative
approaches to promote independence. Agency trainers and managers
require information about effective training techniques that teach
support providers how to encourage self advocacy and choice making to
persons with mental retardation. In addition, public awareness
activities that educate both the public and policymakers on the
importance of direct service workers can enhance the image of community
workers and the individuals with developmental disabilities they assist
(Larson, S. A., et al., ``Residential Services Personnel: Recruitment,
Training and Retention,'' Challenges for a Service System in
Transition, pg. 321, 1994).
Recent developments in two major Federal programs significantly
affect the nature and extent of community-based services for persons
with mental retardation: the Personal Responsibility and Work
Opportunity Reconciliation Act of 1996 (welfare reform) and Medicaid.
Recent welfare reforms provide States with increased flexibility in the
delivery of community-based public services. The Medicaid program is
the primary source of payment for both health care and community-based
long term care services for persons with mental retardation and their
families. Providing training and technical assistance on supported
living to policymakers and services providers involved in the
administration of welfare and Medicaid programs will enable them to
take advantage of new opportunities to shape integrated and flexible
programs for persons with mental retardation.
Proposed Priority 6
The Secretary proposes to establish a Dissemination, Training, and
Technical Assistance Project to promote supported living and choice for
persons with mental retardation. The Project shall:
(1) Identify and synthesize research findings on state-of-the-art
models of supported living;
(2) Develop and disseminate materials based on the synthesis and
provide training and technical assistance to consumers, families,
service providers, State policy makers and State agencies; and
(3) Develop and disseminate training materials for direct service
staff with input from consumers and family members.
In carrying out the purposes of the priority, the Project shall
disseminate materials and coordinate training activities with relevant
units of the Department of Health and Human Services, State public and
private managed care representatives, individuals with disabilities and
other NIDRR Centers addressing related issues.
Electronic Access to This Document
Anyone may view this document, as well as all other Department of
Education documents published in the Federal Register, in text or
portable document format (pdf) on the World Wide Web at either of the
following sites:
http://ocfo.ed.gov/fedreg.htm
http://www.ed.gov/news.html
To use the pdf you must have the Adobe Acrobat Reader Program with
Search, which is available free at either of the preceding sites. If
you have questions about using the pdf, call the U.S. Government
Printing Office toll free at 1-888-293-6498.
Anyone may also view these documents in text copy only on an
electronic bulletin board of the Department. Telephone: (202) 219-1511
or, toll free, 1-800-222-4922. The documents are located under Option
G--Files/Announcements, Bulletins and Press Releases.
Note: The official version of this document is the document
published in the Federal Register.
Invitation To Comment
Interested persons are invited to submit comments and
recommendations regarding these proposed priorities. All comments
submitted in response to this notice will be available for public
[[Page 66929]]
inspection, during and after the comment period, in Room 3424, Switzer
Building, 330 C Street S.W., Washington, D.C., between the hours of
9:00 a.m. and 4:30 p.m., Monday through Friday of each week except
Federal holidays.
Applicable Program Regulations
34 CFR parts 350 and 353.
Program Authority: 29 U.S.C. 760-762.
(Catalog of Federal Domestic Assistance Number 84.133A, Disability
and Rehabilitation Research Projects, and 84.133B, Rehabilitation
Research and Training Centers)
Dated: December 16, 1997.
Judith E. Heumann,
Assistant Secretary for Special Education and Rehabilitative Services.
[FR Doc. 97-33259 Filed 12-19-97; 8:45 am]
BILLING CODE 4000-01-P
