66922 Federal Register / Vol. 62, No. 245 / Monday, December 22, 1997 / Notices

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:

DonnalNangle@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 inservice 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
Federal Register / Vol. 62, No. 245 / Monday, December 22, 1997 / Notices 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-ofthe-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 CommunityResident 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 healthrelated 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
66924 Federal Register / Vol. 62, No. 245 / Monday, December 22, 1997 / Notices

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 newlyinjured 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, postpolio, 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 &
Federal Register / Vol. 62, No. 245 / Monday, December 22, 1997 / Notices 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 newlydiagnosed 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 wellknown 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 MSrelated 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 alreadyimpaired 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.
66926 Federal Register / Vol. 62, No. 245 / Monday, December 22, 1997 / Notices

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 preor 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 Databased 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
Federal Register / Vol. 62, No. 245 / Monday, December 22, 1997 / Notices 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-towork;

(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, consumerdirected 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.
66928 Federal Register / Vol. 62, No. 245 / Monday, December 22, 1997 / Notices

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
Federal Register / Vol. 62, No. 245 / Monday, December 22, 1997 / Notices 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