[Federal Register: December 22, 1997 (Volume 62, Number 245)]
[Page 66921-66929]
From the Federal Register Online via GPO Access [wais.access.gpo.gov]


[[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

[[Page 66922]]


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 

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: 
    Individuals with disabilities may obtain this document in an 
alternate format (e.g., Braille, large print, audiotape, or computer 
diskette) on request to the contact person listed in the preceding 

SUPPLEMENTARY INFORMATION: This notice contains proposed priorities 
under the Disability and Rehabilitation Research Projects and Centers 
Program for 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 
    The Secretary may make awards for up to 60 months through grants or 
cooperative agreements. The purpose of the awards is for planning and 
conducting research, training, demonstrations, and related activities 
leading to the development of methods, procedures, and devices that 
will benefit individuals with disabilities, especially those with the 
most severe disabilities.

Description of Rehabilitation Research and Training Centers

    RRTCs are operated in collaboration with institutions of higher 
education or providers of rehabilitation services or other appropriate 
services. RRTCs serve as centers of national excellence and national or 
regional resources for providers and individuals with disabilities and 
the parents, family members, guardians, advocates or authorized 
representatives of the individuals.
    RRTCs conduct coordinated, integrated, and advanced programs of 
research in rehabilitation targeted toward the production of new 
knowledge to improve rehabilitation methodology and service delivery 
systems, to alleviate or stabilize disabling conditions, and to promote 
maximum social and economic independence of individuals with 
    RRTCs provide training, including graduate, pre-service, and in-
service training, to assist individuals to more effectively provide 
rehabilitation services. They also provide training including graduate, 
pre-service, and in-service training, for rehabilitation research 
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 
    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 
    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.


    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

    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-
    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 
    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 
    (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

    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 
    (2) Investigate and evaluate techniques for enhancing community 
    (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

    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 
    (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 

Proposed Priority 4: Community Integration for Persons with Traumatic 
Brain Injury

    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 
    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; 
    (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
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

    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 
    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; 
    * Coordinate activities with the NCDDR.

Proposed Priority 6: Supported Living and Choice for Persons With 
Mental Retardation

    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 
    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 
    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:


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]