[Federal Register: May 11, 1998 (Volume 63, Number 90)]
[Notices]
[Page 26029-26039]
From the Federal Register Online via GPO Access [wais.access.gpo.gov]
[DOCID:fr11my98-124]
[[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
[[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.
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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__Nangle@ed.gov
Individuals with disabilities may obtain this document in an
alternate format (e.g., Braille, large print, audiotape, or computer
diskette) on request to the contact person listed in the preceding
paragraph.
SUPPLEMENTARY INFORMATION: This notice contains 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:
* 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 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:
* 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
[[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:
* 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.
[[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; http://www.ed.gov/
news.html.
To use the pdf you must have the Adobe Acrobat Reader Program with
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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
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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