26030 Federal Register / Vol. 63, No. 90 / Monday, May 11, 1998 / Notices

DEPARTMENT OF EDUCATION

National Institute on Disability and

Rehabilitation Research; Notice of

Final Funding Priorities for Fiscal

Years 1998–1999 for Certain Centers

and Projects

AGENCY: Department of Education.

ACTION: Notice of final funding priorities

for fiscal years 1998–1999 for certain

centers and projects.

SUMMARY: The Secretary announces final

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.

EFFECTIVE DATE: This priority takes effect

on June 10, 1998.

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 final 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). This notice also

contains final 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 final 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).

Note: This notice of final priorities does

not solicit applications. A notice inviting

applications is published in this issue of the

Federal Register.

Analysis of Comments and Changes

On December 22, 1997, the Secretary

published a notice of proposed

priorities in the Federal Register (62 FR

66922–66929). The Department of

Education received seventeen letters

commenting on the notice of proposed

priority by the deadline date. Technical

and other minor changes—and

suggested changes the Secretary is not

legally authorized to make under

statutory authority—are not addressed.

General

Comment: The ‘‘Description of

RRTCs’’ indicates that ‘‘RRTCs are

operated in collaboration with

institutions of higher education or

providers of rehabilitation services or

other appropriate services.’’ RRTCs

should be operated in collaboration

with institutions of higher education

and (emphasis added) providers of

rehabilitation service providers.

Discussion: The collaboration

requirement included in the

‘‘Description of RRTCs’’ is statutory. No

further restrictions are permissible by

law.

Changes: None.

Comment: An RRTC should be

located in a region of high occurrence of

the disorder being studied. In addition,

in order to be more representative of

other locations where services might be

provided, an RRTC should be located in

small or medium-sized community, and

not in a densely populated urban area.

Discussion: The commenter’s

suggestion would have the effect of

restricting eligibility in violation of the

statute. In addition, an RRTC’s access to

the target population or the replicability

of its findings are not necessarily

limited by the physical location of the

grantee.

Changes: None.

Comment: Applicants’ previous

dissemination efforts, including their

publication record, should be used as an

indicator of their future performance.

Discussion: The quality of an

applicant’s past performance in carrying

out a grant is one of the factors used in

the selection criteria for these RRTCs.

An applicant’s previous publication

record on a grant would be considered

in this evaluation. Placing too much

emphasis on an applicant’s previous

publication record in evaluating an

application may unfairly disadvantage

excellent new researchers or prove an

unreliable indicator of future

dissemination efforts related specifically

to an RRTC.

Changes: None.

Comment: Two commenters suggested

that the requirements for conducting a

state-of-the-science conference and

publishing a final report should be more

flexible. A second commenter suggested

that the state-of-the-science conference

should be held in the fourth year when

more data will be available to present

and discuss.

Discussion: The information from the

state-of-the-science conference will be

used, in conjunction with NIDRR’s

program reviews and other inputs in the

determination of future research issues

and as part of NIDRR’s Government

Performance and Results Act database.

The budget planning process requires

this information to be available during

the fourth year of a five year grant. As

long as the report is available in the

fourth year of the grant, NIDRR agrees

that grantees should have as much

flexibility as possible in regard to the

scheduling of the state-of-the-science

conference.

Changes: The state-of-the-science

conference requirement has been

revised to allow grantees total discretion

in scheduling the conference.

Comment: The training requirements

of the RRTC should include ‘‘nontraditional’’ methods such as using the

Internet and satellite video

conferencing.

Discussion: Applicants have the

discretion to propose the training

methods that a project will use, and the

peer review process will evaluate the

merits of the methods. An applicant

could propose to include training

methods using the Internet and satellite

video conferencing. However, requiring

all projects to include training methods

using the Internet and satellite video

conferencing could exclude equally

effective training methods.

Changes: None.

Comment: NIDRR received a comment

in response to the proposed priority on

Multiple Sclerosis that suggested that

NIDRR require the RRTC to collaborate

with a number of different entities.

Discussion: This comment prompted a

general review of all of the collaboration

and coordination requirements

contained in the proposed RRTC

priorities to determine their

appropriateness and consistency. That

review revealed some inconsistency in

language requiring clarification.

Changes: The RRTC priorities have

been revised to clarify that having met

the stated collaboration or coordination

requirements, each RRTC has the

authority to collaborate or coordinate
Federal Register / Vol. 63, No. 90 / Monday, May 11, 1998 / Notices 26031

with other entities carrying out related

activities.

Priority 1: Secondary Conditions of

Spinal Cord Injury

Comment: The wording in the first

and second activities should be changed

from ‘‘prevent and treat’’ to ‘‘prevent or

treat.’’ Prevention and treatment

protocols are very different, and

requiring investigators to develop

prevention as well as treatment

protocols would require too many

projects. In addition, rather than being

required to address all five of the

conditions, the RRTC should have the

discretion to address four out of the five

secondary conditions listed in the first

activity.

Discussion: While NIDRR agrees that

prevention and treatment protocols are

very different, such protocols are

needed. Similarly, the five secondary

conditions listed are widespread and

problematic. The funding provided to

this project should enable a grantee to

pursue both types of protocols as well

as all of the five conditions included in

the priority.

Changes: None.

Comment: The RRTC should be

required to conduct training workshops

to educate patients, families, service

providers, and health care providers.

Discussion: In part, the RRTC must

meet the general training requirement to

provide ‘‘* * * training on knowledge

gained from the Center’s research

activities to persons with disabilities

and their families, service providers,

and other appropriate parties.’’

Applicants have the discretion to

approach this and other training

requirements broadly, and can propose

to ‘‘educate’’ target audiences on other

information as long as it is in addition

to the knowledge gained from the

Center’s research activities. The peer

review process will evaluate the merits

of each applicant’s proposed training

activities.

Changes: None.

Comment: One commenter indicated

that a significant and growing number of

persons who experience spinal cord

injuries are from minority backgrounds

and live in urban areas, and that many

of those injuries are a result of violence,

including gunshot wounds which

present unique secondary

complications. The same commenter

indicated that women with spinal cord

injuries experience different

complications from those faced by men

with spinal cord injuries, including

problems related to sexuality,

reproduction, and other genito-urinary

problems. The commenter suggested

that the RRTC should place a special

emphasis on the unique needs of

persons from minority backgrounds who

live in urban areas, as well as on

women, because of the unique

rehabilitation management and

community re-entry issues facing both

groups.

Discussion: NIDRR agrees that both of

these groups of persons with SCI face

unique rehabilitation challenges that

merit special emphasis.

Changes: The priority has been

revised to place a special emphasis on

the unique needs of persons with SCI

from minority backgrounds who live in

urban areas as well as women with SCI.

Priority 2: Neuromuscular Diseases

Comment: Is the RRTC expected to

research the genetic discrimination that

could become a problem, or to

determine the ethical and psychosocial

implications of this research? Is the

RRTC intended to address how knowing

the information made available through

genetic testing may affect potential

physical and pyschosocial outcomes?

Discussion: NIDRR prefers to provide

applicants with the discretion to

propose a line, or lines, of investigation

on the issue of examining the risks and

benefits related to the use of genetic

testing. An applicant could propose to

answer the questions that the

commenter poses, and the peer review

process will evaluate the merits of the

approach.

Changes: None.

Priority 3: Multiple Sclerosis

Comment: The proposed priority

solicited comments on whether the

RRTC should investigate: (1) The unique

needs of women with MS, and (2)

alternative models of care for persons of

different cultural, economic, minority,

ethnic, or geographic backgrounds. For

the most part, the commenters indicated

that these were potentially important

topics worthy of exploratory research

activities. The commenters indicated

that not enough is known about the

differences between the needs of men

and women with MS, or between the

needs of persons from different cultural,

economic, minority, ethnic, or

geographic backgrounds. The

commenters suggested that the first step

in this research should be to determine

if those differences exist. The one

commenter who expressed support for

an investigation of the unique needs of

women, suggested that the RRTC

investigate the extent to which MS

affects women in relation to hormonally

mediated events (e.g., pregnancy,

menstruation, and menopause), and the

programs and services that may be

needed to promote effective functioning.

In light of these comments, NIDRR

believes that the first line of inquiry on

these issues should be to determine if

there are differences between the needs

of men and women with MS, as well as

between diverse groups of populations.

Changes: The priority has been

revised to require the RRTC to

investigate if differences exist between

the needs of: (1) Men and women with

MS; and (2) persons with MS from

different cultural, economic, minority,

ethnic, or geographic backgrounds.

Comment: Two commenters suggested

that health promotion and wellness be

addressed separately from substance

abuse in the priority’s first required

activity.

Discussion: There are advantages to

investigating substance abuse within the

context of health promotion and

wellness. However, an applicant could

propose to investigate substance abuse

in a separate project, and the peer

review process will evaluate the merits

of this proposal.

Changes: None.

Comment: Two commenters suggested

that the RRTC address the educational

needs of employers regarding reasonable

accommodations.

Discussion: The fourth activity of the

RRTC involves research on workplace

accommodations. The RRTC is required

to 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 (emphasis

added). NIDRR expects employers to be

included as ‘‘other interested parties’’ in

regard to the fourth activity.

Changes: None.

Comment: The RRTC should address

the impact of the Americans with

Disabilities Act (ADA).

Discussion: The third activity of the

RRTC requires the RRTC to investigate

the employment status of the persons

with MS. An applicant could propose to

address the impact of the ADA as part

of this investigation, and the peer

review process will evaluate the merits

of this research. However, requiring all

applicants to carry out this line of

investigation could exclude other

equally meritorious lines of

investigation on the employment status

of person with MS.

Changes: None.

Comment: NIDRR should establish

three RRTCs related to MS and: (1)

Medical rehabilitation, (2) psychosocial

and vocational rehabilitation; (3) health

care delivery and policy.

Discussion: At this time, and in light

of other priorities, devoting the
26032 Federal Register / Vol. 63, No. 90 / Monday, May 11, 1998 / Notices

additional resources that would be

necessary to support three RRTCs on

these topics for persons with MS is not

feasible.

Changes: None.

Comment: The RRTC should

collaborate with the National Multiple

Sclerosis Society, the American

Academy of Neurology, the American

Society of Neurorehabilitation, the

Paralyzed Veterans of America, and the

RRTC on Managed Care.

Discussion: When a priority requires

collaboration or coordination with one

or more entities, the rationale is that the

RRTC could not carry out the purposes

of the priority without the required

collaboration or coordination. All of the

entities listed in the comment are good

candidates for collaboration, and an

applicant could propose to collaborate

with any or all of them. However, the

RRTC could carry out its purposes

without collaborating with these

entities. Therefore, the priority has not

been revised to require collaboration

with the agencies listed in the comment.

Changes: None.

Comment: The state-of-the-science

conference should be held in

conjunction with the annual meeting of

the Consortium of Multiple Sclerosis

Centers.

Discussion: An applicant could

propose to carry out the state-of-thescience conference in conjunction with

the annual meeting of the Consortium of

Multiple Sclerosis Centers (CMSCs).

However, the conference could be

successful even if it were not held in

conjunction with the annual meeting of

the CMSCs. Therefore, it is not

necessary to require it.

Changes: None.

Priority 4: Community Integration for

Persons With Traumatic Brain Injury

Comment: In addition to identifying

and evaluating programs for successful

community integration of persons with

TBI, the RRTC should develop such

programs. The RRTC should also

investigate the factors that support or

serve as barriers to community

integration.

Discussion: It is feasible and

necessary for the RRTC to not only

identify and evaluate programs that

support community integration, but also

develop these programs. In the process

of carrying out these development and

evaluation activities, the RRTC will

need to investigate the factors that

support or serve as barriers to

community integration. Therefore, it is

unnecessary to specifically state it as a

requirement.

Changes: The priority has been

revised to require the RRTC to not only

identify and evaluate, but also develop

model programs and services that

support community integration.

Comment: While there are a few

assessment tools that are used to

measure community integration and the

quality of life of persons with TBI, better

assessment tools are needed. The RRTC

should develop outcome measures to

delineate the full breadth of the

community integration challenges faced

by individuals with TBI.

Discussion: Development of improved

assessment tools will make a significant

contribution to other activities of the

RRTC as well as to the field. NIDRR

expects that the RRTC will fully

consider the possibility of improving

existing assessments before undertaking

to develop a new assessment.

Changes: The priority has been

revised to require the RRTC to either

identify, improve, and evaluate, or

develop and evaluate an assessment that

measures the community integration of

persons with TBI.

Comment: The requirement to

investigate the impact of aging on

community integration should be

expanded to include persons who incur

TBI at an advanced age.

Discussion: The requirement to

investigate the impact of aging on

community integration does not have to

be revised in order for an applicant to

include persons who incur TBI at an

advanced age. NIDRR expects a wide

range of ages of onset to be included

among the sample population in order

for the sample to be representative of

the target population of persons with

TBI. Therefore, it is unnecessary to

require it.

Changes: None.

Comment: The RRTC should address

the community integration of persons

with TBI from minority backgrounds.

Discussion: NIDRR agrees that persons

with TBI from minority backgrounds,

particularly those from urban areas who

are victims of violence, have unique

community integration needs.

Changes: The priority has been

revised to require the RRTC to address

the unique community integration

needs of persons from minority

backgrounds.

Comment: NIDRR should be more

specific in describing the nature and

scope of the research that it expects the

RRTC to carry out.

Discussion: NIDRR makes every effort

to be as least prescriptive as possible

when it establishes an RRTC’s

requirements in order to encourage

innovation and in recognition of the

expertise of potential applicants. NIDRR

depends on its peer review process to

ensure the appropriateness and quality

of the nature and scope of the research

that an RRTC carries out.

Changes: None.

Comment: NIDRR should clarify

whether the research into the impact on

aging on community integration should

address aging support systems as well as

aging of the human organism. These are

two very different issues.

Discussion: NIDRR prefers to provide

applicants with the discretion to

propose a line, or lines, of investigation

on the issue of the impact of aging on

community integration. An applicant

could propose either, or both,

approaches that the commenter

describes, and the peer review process

will evaluate the merits of the approach.

Changes: None.

Priority 6: Supported Living and Choice

for Persons With Mental Retardation

Comment: In addition to identifying

and synthesizing research findings on

state-of-the-art models of supported

living, the project should develop

descriptions of the nature of the

organizations that approximate the

ideals of supported living and the

transformations that traditional

community organizations are going

through to adopt supported living

approaches and ideals.

Discussion: An applicant could

propose to develop descriptions of the

nature of the organizations that

approximate the ideals of supported

living and the transformations that

traditional community organizations are

going through to adopt supported living

approaches and ideals. The peer review

process will evaluate the merits of these

descriptions. NIDRR declines to require

all applicants to develop these

descriptions because it is not necessary

in order to identify and synthesize

research findings on state-of-the-art

models of supported living.

Changes: None.

Comment: The project should be

expanded to include all persons with

developmental disabilities in addition

to those with mental retardation.

Discussion: If persons with

developmental disabilities who are not

mentally retarded could benefit from the

RRTC’s materials and information, an

applicant could propose to include

them in the target population as long as

it is in addition to persons with mental

retardation. The peer review process

will evaluate the merits of this proposal.

NIDRR declines to require all applicants

to include persons with developmental

disabilities who are not mentally

retarded out of concern that applicants

will underserve persons with mental

retardation.
Federal Register / Vol. 63, No. 90 / Monday, May 11, 1998 / Notices 26033

Changes: None.

Comment: The third activity of the

project should be revised: to require the

project to: (1) Undertake public

awareness activities to educate the

public and policymakers on the

importance of direct support workers;

and (2) become familiar with existing

training materials prior to development

of new training materials in order to

avoid duplication.

Discussion: An applicant could

propose to undertake public awareness

activities to educate the public and

policymakers on the importance of

direct support workers as part of the

second activity required by the priority.

The peer review process will evaluate

the merits of these public awareness

activities.

In regard to becoming familiar with

existing training materials prior to

development of new training materials

in order to avoid duplication, NIDRR

expects that all applicants would carry

out such a review as a matter of routine.

Therefore, it is unnecessary to require it.

Changes: None.

Comment: If agencies cannot find or

keep qualified workers, the viability of

supported living is at risk. The project

should carry out research, training, and

demonstration activities on strategies to

address direct support worker

recruitment, retention, and training.

Discussion: Research, training, and

demonstration activities on strategies to

address direct support worker

recruitment, retention, and training is

critically important to the success of

supported living. These suggested

activities are outside the scope of this

project, however, NIDRR plans to

establish an RRTC on Community

Integration for Persons with Mental

Retardation in FY 98 that will carry out

these activities.

Changes: None.

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.

General Requirements

The following requirements apply to

these RRTCs pursuant to these absolute

priorities unless noted otherwise. An

applicant’s proposal to fulfill these

proposed requirements will be assessed

using applicable selection criteria in the

peer review process.

The 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.

The 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.

The 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 and publish a

comprehensive report on the final

outcomes of the conference. The report

must be published in the fourth year of

the grant.

Priorities

Under 34 CFR 75.105(c)(3), the

Secretary gives an absolute preference to

applications that meet the following

priorities. The Secretary will fund under

this competition only applications that

meet one of these absolute priorities.

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
26034 Federal Register / Vol. 63, No. 90 / Monday, May 11, 1998 / Notices

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, Volume

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. and Formal, C. S., 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 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

adjust (Steins, S. A., et al., ‘‘Spinal Cord

Injury Rehabilitation: Individual

Experience, Personal Adaptation, and

Social Perspectives,’’ Archives of

Physical Medicine and Rehabilitation,

Volume 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 and 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.
Federal Register / Vol. 63, No. 90 / Monday, May 11, 1998 / Notices 26035

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.

Priority 1

The Secretary will establish an RRTC

on Secondary Conditions of Spinal Cord

Injuries to improve general health, wellbeing, 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

regimens.

In carrying out the purposes of the

priority, the RRTC must:

• Address the unique needs of

persons with SCI from minority

backgrounds who live in urban areas as

well as women with SCI; and

• Coordinate with the NIDRRsponsored Model SCI Systems, the

RRTCs on Aging with a Disability,

Personal Assistance Services, and

Managed Care, and related research or

training activities sponsored by the

National Center for Medical

Rehabilitation Research, the Centers for

Disease Control, and other entities.

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 a 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,

Volume 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,

Volume 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, Volume 68, No. 4,

pgs. 351–357, 1997). Despite its

technical simplicity, home ventilation

leads to a number of social, medical and

infrastructural problems (Paraplegia,

Volume 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 and

Rehabilitation, Volume 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 and

Rehabilitation, Volume 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, Volume 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
26036 Federal Register / Vol. 63, No. 90 / Monday, May 11, 1998 / Notices

diseases (Swash, M. and Schwartz, M.

S., Neuromuscular Diseases: A Practical

Approach to Diagnosis and

Management, pg. 3, 1988).

Priority 2

The Secretary will 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 must coordinate with

related research or training activities

sponsored by the National Institute on

Neurological Disorders and Stroke, and

other entities.

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. and 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,

Volume 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.

Priority 3

The Secretary will 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;

(5) Investigate the interaction between

aging and MS;

(6) Investigate if differences exist

between the needs of: (a) Men and

women with MS; and (b) persons with

MS from different cultural, economic,

minority, ethnic, or geographic

backgrounds.

In carrying out the purposes of the

priority, the RRTC must collaborate

with the Consortium of MS Centers, the

RRTC on Substance Abuse, and other

entities carrying out related research or

training activities.

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
Federal Register / Vol. 63, No. 90 / Monday, May 11, 1998 / Notices 26037

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, Volume 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, Volume 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, Volume

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.

Priority 4

The Secretary will establish an RRTC

on Community Integration of Persons

with TBI to assist families to cope, and

to improve community resources,

employment outcomes, and educational

programming. The RRTC shall:

(1) Either identify, improve, and

evaluate, or develop and evaluate an

assessment that measures community

integration.

(2) Identify, develop, and evaluate

model programs and services that

support community integration;

(3) Identify, develop, and evaluate

strategies to improve employment

outcomes, including obtaining initial

employment and successful return-towork;

(4) Identify and evaluate effective

practices that link rehabilitation and

education professionals to facilitate

identification and appropriate

educational programming for children;

(5) Identify and evaluate techniques to

assist families to cope; and

(6) Investigate the impact of aging on

community integration;

In carrying out the purposes of the

priority, the RRTC must:

• Coordinate with the TBI Model

Systems projects, the RRTC on

Substance Abuse, other entities carrying

out related research and training

activities;

• Address the needs of persons with

TBI who are substance abusers; and

• Address the unique community

integration needs of persons from

minority backgrounds.

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
26038 Federal Register / Vol. 63, No. 90 / Monday, May 11, 1998 / Notices

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.

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,’’ Volume 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.

Priority 5

The Secretary will 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.

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.

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.
Federal Register / Vol. 63, No. 90 / Monday, May 11, 1998 / Notices 26039

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., and 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.

Priority 6

The Secretary will 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 must 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

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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.

APPLICABLE PROGRAM REGULATIONS: 34

CFR Parts 350 and 353.

Program Authority: 29 U.S.C. 760–762.

Dated: May 5, 1998.

(Catalog of Federal Domestic Assistance

Number 84.133A, Disability and

Rehabilitation Research Projects, and

84.133B, Rehabilitation Research and

Training Centers)

Judith E. Heumann,

Assistant Secretary for

Special Education and

Rehabilitative Services.

[FR Doc. 98–12378 Filed 5–8–98; 8:45 am]

BILLING CODE 4000–01–P

DEPARTMENT OF EDUCATION

[CFDA Nos.: 84.133A and 84.133B]

Office of Special Education and

Rehabilitative Services, National

Institute on Disability and

Rehabilitation Research; Notice

Inviting Applications for New Awards

Under the Disability and Rehabilitation

Research Project and Centers Program

for Fiscal Year (FY) 1998

Note to Applicants: This notice is a

complete application package. Together

with the statute authorizing the

programs and applicable regulations

governing the programs, including the

Education Department General

Administrative Regulations (EDGAR),

this notice contains information,

application forms, and instructions

needed to apply for a grant under these

competitions.

This program supports the National

Education Goal that calls for all

Americans to possess the knowledge

and skills necessary to compete in a

global economy and exercise the rights

and responsibilities of citizenship.

The estimated funding levels in this

notice do not bind the Department of

Education to make awards in any of

these categories, or to any specific

number of awards or funding levels,

unless otherwise specified in statute.

Applicable Regulations: The

Education Department General

Administrative Regulations (EDGAR),

34 CFR Parts 74, 75, 77, 80, 81, 82, 85,

86, and 350.