[Federal Register Volume 63, Number 90 (Monday, May 11, 1998)]
[Notices]
[Pages 26030-26039]
From the Federal Register Online via the Government Publishing Office [www.gpo.gov]
[FR Doc No: 98-12378]



[[Page 26029]]

_______________________________________________________________________

Part VI





Department of Education





_______________________________________________________________________



National Institute on Disability and Rehabilitation Research; Notice of 
Final Funding Priorities and Notice Inviting Applications for New 
Awards for Fiscal Years 1998-1999 for Certain Centers and Projects; 
Notices

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

[[Page 26030]]



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: 
Donna__N<a href="/cdn-cgi/l/email-protection#82e3ece5eee7c2e7e6ace5edf4"><span class="__cf_email__" data-cfemail="3958575e555c795c5d175e564f">[email protected]</span></a>
    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 
``non-traditional'' 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

[[Page 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

[[Page 26032]]

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-
the-science 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.

[[Page 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 in-service training, for rehabilitation research 
personnel and other rehabilitation personnel.
    RRTCs serve as informational and technical assistance resources to 
providers, individuals with disabilities, and the parents, family 
members, guardians, advocates, or authorized representatives of these 
individuals through conferences, workshops, public education programs, 
in-service training programs and similar activities.
    RRTCs disseminate materials in alternate formats to ensure that 
they are accessible to individuals with a range of disabling 
conditions.
    NIDRR encourages all Centers to involve individuals with 
disabilities and individuals from minority backgrounds as recipients of 
research training, as well as clinical training.
    The Department is particularly interested in ensuring that the 
expenditure of public funds is justified by the execution of intended 
activities and the advancement of knowledge and, thus, has built this 
accountability into the selection criteria. Not later than three years 
after the establishment of any RRTC, NIDRR will conduct one or more 
reviews of the activities and achievements of the Center. In accordance 
with the provisions of 34 CFR 75.253(a), continued funding depends at 
all times on satisfactory performance and accomplishment.

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-of-the-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

[[Page 26034]]

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 health-related problems in the general 
population. Obesity in SCI, particularly morbid obesity, is more likely 
to contribute to health-related problems. This condition is closely 
tied to nutritional status and the ability to engage in physical 
activity or exercise. Limitations on the latter are likely to 
contribute significantly to the problems stemming from this secondary 
condition (Blackmer, J. and Marshall, S., ``Obesity and Spinal Cord 
Injury: An Observational Study,'' Spinal Cord, 35(4), pgs. 245-247, 
April, 1997).
    Depression is more common among persons with SCI than among the 
general population. There is some evidence that depression is higher 
among persons whose SCI is of relatively short duration compared to 
others who have had a longer time to 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.

[[Page 26035]]

    The availability and dissemination of information about this injury 
tends to be concentrated in speciality areas. This problem can be 
frustrating to newly-injured individuals and their family members. 
Rapidly accessing the most up-to-date clinical information can also be 
problematic for non-specialty health professionals.

Priority 1

    The Secretary will 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 regimens.
    In carrying out the purposes of the priority, the RRTC must:
    <bullet> Address the unique needs of persons with SCI from minority 
backgrounds who live in urban areas as well as women with SCI; and
    <bullet> Coordinate with the NIDRR-sponsored 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, post-polio, Guillan-Barre, muscular dystrophy, 
myasthenia gravis, and other muscular atrophies and myopathies. NMDs 
affect approximately 400,000 children and adults in the United States 
(LaPlante, M., et al., Disability in the United States: Prevalence and 
Causes, 1992). Conditions associated with these disorders include 
progressive weakness, limb contractures, spine deformity, and impaired 
pulmonary function. Cardiac involvement and intellectual impairment 
occur with some NMDs. The progression of these degenerative diseases 
takes three stages: ambulatory, wheelchair, and prolonged survival 
(Bach, J. R. and Lieberman, J.S., ``Rehabilitation of the Patient with 
Disease Affecting the Motor Unit,'' Rehabilitation Medicine: Principles 
and Practice, pg. 1099, 1993). Past research efforts have focused on 
documenting the impairment and disability profiles of neuromuscular 
disease as well as on mitigating the functional consequences of NMD. 
Functional independence and community integration continue to challenge 
persons with NMDs.
    Among the functional independence issues that affect persons with 
NMD are preserving respiratory function, maintaining muscle strength, 
assuring good nutrition, and combating muscle fatigue. Respiratory 
insufficiency due to progressive muscle wasting is 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 newly-diagnosed individuals and their 
family members. Rapidly accessing the most up-to-date clinical 
information can also be problematic for the non-specialist physicians, 
as evidenced by the well-known difficulty in diagnosing these

[[Page 26036]]

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 MS-related impairments. 
Bladder difficulties may cause a person to avoid activities.
    Maintaining healthy lifestyle habits can assist persons with MS to 
maintain maximum function despite the disease. Exercise can strengthen 
muscles when possible or can help maintain muscle tone for those that 
are affected, although the potential for overexercise must be 
understood. Adequate rest is critical for persons with MS and 
relaxation techniques can be aids as well (Chan, A., ``Physical 
Therapy,'' Multiple Sclerosis, pg. 87, 1996). Various diets have been 
suggested, as have vitamin and nutritional supplements. However, the 
evidence supporting the value of those measures is inconclusive. 
Alcohol or substance abuse can be problems for persons with the disease 
whose neurological deficits have caused decreased tolerance. Any 
substance that places extra strain on the already-impaired nervous 
system must be used with extreme caution. Drug interactions can be a 
danger if the person is on prescribed medication (Lechtenberg, R., 
Multiple Sclerosis Fact Book, pg. 171, 1989).
    It is difficult to assess the employment status of persons with MS. 
This is due in part to the nature of the disease and its variable 
impact on individuals' ability to work. Information on the employment 
status of persons with MS may be available through a secondary analysis 
of databases such as the 1994-95 National Health Interview Survey 
Disability Supplement. Persons with MS may require unique work 
accommodations such as sustained cooler environments, rest breaks, and 
flexible work schedules.
    Rehabilitation techniques are available to assist the person with 
MS in daily life, including at the workplace. Medications can be 
effective for treating fatigue, bladder, bowel, or sexual difficulties. 
Physical therapists commonly recommend mobility aids and devices to 
help with visual impairments or difficulties using the hands. At times, 
as when mobility impairments occur, there may be hesitation or 
unwillingness on the part of the person with MS, physicians, or health 
care coverage providers, to use assistive technologies, believing that 
the problem will go away (Iezzoni, L., ``When Walking Fails,'' The 
Journal of the American Medical Association, 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

[[Page 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 pre-or post-injury heavy 
drinking, has been related to worse post-injury outcomes (Kreutzer, J. 
S., ``A Prospective Longitudinal Multi-center Analysis of Alcohol Use 
Patterns Among Persons with TBI,'' The Journal of Head Trauma 
Rehabilitation, 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 Data-based Approach to 
Program Development,'' Journal of Head Trauma Rehabilitation, 10 (1), 
pgs. 27-39, 1995).
    The prevalence of TBI in children is documented by the National 
Pediatric Trauma Registry located at the RRTC on Rehabilitation and 
Childhood Trauma. Most injured children are one to 14 years of age. 
Children with disabilities face numerous problems transitioning from 
rehabilitation to educational settings. Educators may be unaware of the 
impact of TBIs on school performance and uncertain of effective 
educational programming. Establishing a stronger link between hospitals 
and school professionals is an essential step toward improving 
educational and functional outcomes (Farmer, J. E., et al., 
``Educational Outcomes in Children with Disabilities; Linking Hospitals 
and Schools,'' NeuroRehabilitation, 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-to-work;
    (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:
    <bullet> Coordinate with the TBI Model Systems projects, the RRTC 
on Substance Abuse, other entities carrying out related research and 
training activities;
    <bullet> Address the needs of persons with TBI who are substance 
abusers; and
    <bullet> 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

[[Page 26038]]

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, 
consumer-directed personal assistance strategies, the availability of 
assistive technology, peer counseling techniques, housing options, and 
self-care techniques. This information can help provide persons with 
disabilities with the knowledge to exercise control over their lives, 
reduce their reliance on others in making decisions, perform everyday 
activities, and participate more fully in community life.
    To generate baseline data on information dissemination related to 
independent living, the National Center for the Dissemination of 
Disability Research (NCDDR) conducted a nationwide survey asking 
persons with disabilities about their perceptions of the usefulness of 
research-based disability information, their knowledge of where to 
obtain that information, and their current modes of receiving 
information. Seventy-two percent of survey respondents affirmed that 
disability research information is useful to them. Twenty percent 
reported that they do not know if it is useful to them, and eight 
percent responded that the information is not useful. The survey also 
asked the respondents if they knew how to find information from 
disability research. Forty-eight percent responded they did, and 32 
percent responded that they did not know how to find the information 
(NCDDR, ``Research Exchange,'' 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:
    <bullet> Include information and activities that feature concepts 
of consumer choice, independence, personal autonomy and self-direction; 
and
    <bullet> 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.

[[Page 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

    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; <a href="http://www.ed.gov/
news.html">http://www.ed.gov/
news.html</a>.
    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.

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


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