[Federal Register Volume 63, Number 143 (Monday, July 27, 1998)]
[Notices]
[Pages 40156-40163]
From the Federal Register Online via the Government Publishing Office [www.gpo.gov]
[FR Doc No: 98-20009]
[[Page 40155]]
_______________________________________________________________________
Part II
Department of Education
_______________________________________________________________________
National Institute on Disability and Rehabilitation Research: Final
Funding Priorities (Fiscal Years 1998-1999) for Certain Centers and
Projects; Notice
Federal Register / Vol. 63, No. 143 / Monday, July 27, 1998 /
Notices
[[Page 40156]]
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
SUMMARY: The Secretary announces final funding priorities for two
Disability and Rehabilitation Research Projects (DRRPs) and three
Rehabilitation Research and Training Centers (RRTCs) 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 August 26, 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 two DRRPs related to a burn data coordinating project and
collaborative research for traumatic brain injury (TBI) model systems.
This notice also contains final priorities for three RRTCs related to
employment opportunities for American Indians, community integration
for persons with mental retardation, and policies affecting families of
children with disabilities.
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 was published in the
Federal Register on July 2, 1998 (63 FR 36298).
Analysis of Comments and Changes
On June 8, 1998 the Secretary published in separate parts two
notices of proposed priorities in the Federal Register. One notice
included two proposed priorities related to a burn data coordinating
project and collaborative research for traumatic brain injury (TBI)
model systems (63 FR 31320-31321). The second notice included three
proposed priorities related to employment opportunities for American
Indians, community integration for persons with mental retardation, and
policies affecting families of children with disabilities (63 FR 31324-
313290). The Department of Education received 17 letters commenting on
the notices of proposed priorities 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.
Disability and Rehabilitation Research Projects
Priority 1: Burn Data Coordinating Project
Comment: Three commenters identified qualifications that applicants
for the Burn Data Coordination Project should possess. The commenters
suggested that applicants for the burn data coordinating project should
demonstrate: an understanding of burn care, an understanding of the
burn model systems database, and the ability and motivation to
collaborate with the database currently being generated by the American
Burn Association. In addition, the commenters suggested that applicants
should have experience in the development, coordination, and management
of multi-center databases and possess the technology to respond to
idiosyncratic hardware and software needs and issues that each burn
model system brings to the common database.
Discussion: An applicant's qualifications are addressed in the peer
review process and evaluated on the basis of the competition's
selection criteria. The qualifications identified by the commenter will
be evaluated in the peer review process. It is unnecessary to include
these qualifications in the priority.
Changes: None.
Comment: The Burn Data Coordinating Project should be affiliated
with an institution that is currently operating a Burn Model Systems
Project.
Discussion: NIDRR recognizes the advantages of having the Burn Data
Coordination Project administered by an entity that is affiliated with
an institution that is currently operating a Burn Model Systems
Project. However, NIDRR does not believe that this affiliation is a
prerequisite qualification and is unwilling to limit eligible
applicants to current Burn Model Systems projects.
Changes: None.
Comment: One commenter suggested that the Burn Data Coordination
Project's autonomy and authority should be clearly defined, strict time
frames should be required for transmission of data and other summary
reports to the model systems from the data center, and the procedures
that are currently being developed to use scannable forms and score
certain instruments should be continued.
Discussion: These suggestions relate to the administration of the
Burn Data Coordination Project grant and the project's relationship
with the Burn Model Systems Projects. Following the awarding of the
grant, NIDRR will work cooperatively with the Burn Data Coordination
Project and the Burn Model Systems Projects to address and resolve
these issues. It is not necessary to revise the priority in order to
address these administrative matters.
Changes: None.
Comment: Clarification is needed on the requirement for the Burn
Data Coordinating Project to collaborate with the Spinal Cord and TBI
Model Systems data collection activities.
Discussion: NIDRR believes that communication between the Burn,
Spinal Cord, and TBI Model Systems data collection projects may result
in improved performance of their common data collection activities and
could lead to mutually beneficial collaborative activities. In order to
provide the project with as much discretion as possible, the priority
indicates that this collaboration should be carried out ``as
appropriate.''
Changes: None.
Priority 2: Collaborative Research for Traumatic Brain Injury Model
Systems
Comment: The priority should be revised to address the needs of
individuals in correctional facilities.
Discussion: An applicant could propose to address the needs of
individuals with TBI in correctional facilities. The peer review
process will evaluate the merits of the proposal. However, NIDRR
declines to specify any particular subpopulations of research subjects.
Changes: None.
Comment: The priority should be revised to require projects to use
the TBI Model Systems database.
Discussion: NIDRR recognizes the advantages of using the TBI model
systems database and expects that a
[[Page 40157]]
number of applicants will propose collaborative research projects that
use the database. Because there may be highly meritorious collaborative
research projects that do not use the database, NIDRR declines to limit
the scope of research to only those that use the database.
Changes: None.
Comment: The priority should be revised to require collaboration
with more than one Model System.
Discussion: NIDRR recognizes the advantages of collaboration with
more than one Model System. However, there may be highly meritorious
research projects that involve only one Model System. NIDRR declines to
require that applicants collaborate with more than one Model System in
order to provide applicants with as much discretion as possible.
Changes: None.
Comment: The meaning of collaboration should be clarified.
Discussion: The selection criteria on collaboration (see 34 CFR
350.54(k)) provide all applicants with guidance on the meaning of
collaboration for the purpose of the priority. No further guidance is
necessary.
Changes: None.
Comment: Any non-Model System applicant should demonstrate
equivalent levels of data quality control as achieved by the Model
System.
Discussion: The peer review process will evaluate the merits of the
research that applicants propose, including the level of data quality
control. It is not necessary to revise the priority in order to address
the quality of the data that applicants' propose to collect.
Changes: None.
Comment: The priority should be revised to include collaborative
projects on costs of rehabilitative interventions and their
relationship to the effects of those interventions.
Discussion: An applicant could propose to address the costs of
rehabilitative interventions and their relationship to the effects of
those interventions. The peer review process will evaluate the merits
of the proposal. However, NIDRR has no basis for requiring all
applicants to carry out this research.
Changes: None.
Comment: In the Background statement to the priority, one of the
examples of the collaborative research that could be carried out under
the priority is assessment and treatment of persons with mild TBI.
Individuals with mild TBI are not currently captured by the Model
System database. Collaborative research on this topic, though very
important, would involve a brand new effort, and one for which existing
Model Systems offer no special advantages.
Discussion: The fact that assessment and treatment of persons with
mild TBI was one of a number of examples included in the Background
statement does not bind or encourage applicants to propose this
research.
Changes: None.
Comment: The priority should be revised to acknowledge need for an
assessment tool to measure community integration of persons with TBI.
Discussion: An applicant could propose to carry out research
contributing to the development of these tools. The peer review process
will evaluate the merits of the research. However, NIDRR has no basis
for requiring all applicants to carry out this research.
Changes: None.
Rehabilitation Research and Training Centers
Priority 1: Employment Opportunities for American Indians
Comment: The fourth activity should be revised to require the RRTC
to provide a technical assistance training program to counseling staff
from community based service programs, American Indian Vocational
Rehabilitation Projects supported under Section 130 of the
Rehabilitation Act, and State VR agencies that serve American Indians.
Discussion: In part, the general RRTC training requirement
specifies that the RRTC must provide training to persons with
disabilities and their families, service providers, and other
appropriate parties in accessible formats on knowledge gained from the
Center's research activities. No further requirements are necessary for
the RRTC to carry out the training suggested by the commenter.
Changes: None.
Comment: The priority should be expanded to include two new
activities: (1) analyzing existing data to determine the specific risk
factors for severe disabilities among American Indian people, and
developing primary and secondary prevention strategies that address
these risk factors in order to achieve long-term reduction in lifestyle
risk factors that contribute to disability; and (2) developing and
evaluating a model Independent Living Service program.
Discussion: NIDRR acknowledges the importance of the suggested
activities, however, the purpose of this RRTC is to improve the
employment status of American Indians with disabilities. The suggested
activities are not sufficiently related to the purpose of the RRTC to
be added to the priority. Also, adding them to the priority is not
feasible in light of the resources available to the RRTC.
Changes: None.
Comment: It would be interesting to assess whether American Indians
with disabilities seek seasonal subsistence employment such as ricing,
fishing, hunting, sheepherding, and berrypicking. The priority should
include culturally-specific strategies for employment such as
subsistence employment.
Discussion: An applicant could propose to carry out research on
subsistence employment. The peer review process will evaluate the
merits of the research. However, NIDRR has no basis for requiring all
applicants to carry out this research.
Changes: None.
Discussion: The RRTC is expected to be national in scope and
address the needs of American Indians with disabilities in all parts of
the country.
Changes: None.
Priority 2: Community Integration for Persons With Mental Retardation
Comment: Recreation and leisure should be included in the RRTC's
efforts in studying effective and cost-beneficial approaches for
community integration.
Discussion: An applicant could propose to integrate recreation and
leisure into the research activities of the RRTC. The peer review
process will evaluate the merits of the research. However, NIDRR has no
basis for requiring all applicants to integrate recreation and leisure
into the research activities of the RRTC.
Changes: None.
Disability and Rehabilitation Research Projects
Authority for Disability and Rehabilitation Research Projects
(DRRPs) is contained in section 202 of the Rehabilitation Act of 1973,
as amended (29 U.S.C. 761a). DRRPs carry out one or more of the
following types of activities, as specified in 34 CFR 350.13-350.19:
research, development, demonstration, training, dissemination,
utilization, and technical assistance. Disability and Rehabilitation
Research Projects develop methods, procedures, and rehabilitation
technology that maximize the full inclusion and integration into
society, employment, independent living, family support, and economic
and social self-sufficiency of individuals with disabilities,
especially individuals with the most severe disabilities. In addition,
DRRPs improve the effectiveness of services authorized
[[Page 40158]]
under the Rehabilitation Act of 1973, as amended.
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: Burn Data Coordinating Project
Background. In 1994 NIDRR established the Burn Injury
Rehabilitation Model Systems of Care (Burn Model Systems) by awarding
three 36-month projects. In 1997 NIDRR reestablished the Burn Model
Systems with the award of four 60-month projects. These projects
develop and demonstrate a comprehensive, multidisciplinary model system
of rehabilitative services for individuals with severe burns, and
evaluate the efficacy of that system through the collection and
analysis of uniform data on system benefits, costs, and outcomes. The
projects study the course of recovery and outcomes following the
delivery of a coordinated system of care including emergency care,
acute care management, comprehensive inpatient rehabilitation, and
long-term interdisciplinary follow-up services.
The Burn Model Systems projects serve a substantial number of
patients, allowing the projects to conduct clinical research and
program evaluation. In addition, the Burn Model Systems projects
utilize a complex data collection and retrieval program with the
capability to analyze the different system components and provide
information on project effectiveness and benefits. The projects are
intended to establish appropriate, uniform descriptors of
rehabilitation care. Information is collected throughout the
rehabilitation process. Systematic burn injury care permits long-term
follow-up on the course of injury and the identification of continuing
needs and results in areas such as functional outcome, health and
rehabilitation services, procedures for cost-reimbursement and billing
and community integration. The Burn Model Systems projects serve as
regional and national models for program development and as information
centers for consumers, families, and professionals.
In order to take full advantage of the data collected by individual
Burn Model System projects, there is a need for a project to assist the
projects in their research efforts and establish and maintain a
combined database for short-and long-term outcome evaluations
(functional, health, psycho-social and vocational status measures) and
financial assessments (rehabilitation, professional and hospital
charges) for various burn care and injury rehabilitation strategies.
Priority 1: The Secretary will establish a Burn Data Coordinating
Project for the purpose of maintaining a common database of burn care
and injury rehabilitation information compiled by the Burn Model
Systems projects supported by NIDRR. The project shall:
(1) Establish and maintain a common database through the data
collection, entry, transfer, editing, quality control, issues
resolution, and integration efforts of NIDRR's Burn Injury
Rehabilitation Model Systems' projects;
(2) Provide technical assistance to the Burn Model Systems projects
in the compilation of common data values from each Burn Injury Model
System into a single quality information database for both joint and
site specific management reporting, center evaluations and research
analyses;
(3) Develop management reports on each Burn Injury Model System
project's database-related activities and on trends that can be
combined with and compared to other national data systems for
evaluation of burn injury outcomes;
(4) Provide technical assistance to the Burn Model System projects
in the preparation of scientific articles by providing statistical and
analytical support;
(5) Provide technical assistance to the Burn Model Systems projects
in the design, implementation, and analysis of specialized clinical
studies that assess new burn injury rehabilitation methodologies; and
(6) Provide technical assistance to the Burn Model Systems projects
in the clinical and systems analysis studies by collecting and
analyzing data on patient characteristics, diagnoses, causes of injury,
interventions, outcomes, and costs within a uniform standardized
database.
In carrying out these purposes, the project must:
As appropriate, collaborate with other model systems (such
as spinal cord and traumatic brain injury model systems) data
collection activities; and
Link Burn Injury Model Systems, NIDRR Staff, and the
project as required to facilitate database interactions and information
dissemination opportunities.
Priority 2: Collaborative Research for Traumatic Brain Injury Model
Systems
Background. In 1987 NIDRR funded four research and demonstration
projects to establish the Traumatic Brain Injury Model Systems of Care
(TBI Model Systems) for individuals in need of comprehensive,
multidisciplinary rehabilitative services. At present NIDRR supports
five TBI Model Systems projects to study the course of recovery and
outcomes following the delivery of a coordinated system of care
including emergency care, acute neuro-trauma management, comprehensive
inpatient rehabilitation, and long-term interdisciplinary follow-up
services. The TBI Model Systems projects collect and analyze uniform
data from projects on system benefits, costs, and outcomes.
The TBI Model Systems projects serve a substantial number of
individuals, allowing the projects to conduct clinical research and
program evaluation, and maximize the potential for project replication.
In addition, the systems have a complex data collection and retrieval
program with the capability to analyze different system components and
provide information on cost effectiveness and benefits. Information is
collected throughout the rehabilitation process, permitting long-term
follow-up on the course of injury, outcomes, and changes in employment
status, community integration, substance abuse and family needs. The
TBI Model Systems projects serve as regional and national models for
program development and as information centers for consumers, families,
and professionals.
On January 21, 1998, NIDRR published a notice in the Federal
Register inviting applications to establish 10 additional TBI Model
Systems projects (63 FR 3240). In conjunction with the establishment of
these new TBI Model Systems projects, NIDRR is establishing
collaborative research projects to broaden knowledge and encourage
multi-institutional studies of outcomes, rehabilitation interventions
and service delivery system innovation for individuals with traumatic
brain injury. The following are examples of collaborative research
topics that the proposed project could carry out: evaluation of
emerging pharmacologic interventions; examination of the effects of
specific type and intensity of rehabilitative treatments; aging with
TBI; secondary conditions of TBI; assessment and treatment in mild
traumatic brain injury; impact of environmental factors on long term
outcomes; impact of substance abuse on memory; and implications of
managed care on availability and type of care for persons with TBI.
Priority 2: The Secretary will establish collaborative research
projects for the
[[Page 40159]]
purpose of improving the knowledge about rehabilitation outcomes in
order to improve the lives of persons with TBI, their families, and
caregivers. A collaborative research project shall:
(1) Investigate rehabilitation interventions or service delivery
issues; and
(2) Disseminate information based on that investigation to TBI
Model Systems projects and other appropriate rehabilitation settings.
In carrying out the purposes of the priority, the project must:
Collaborate with one or more of the 17 NIDRR TBI Model
Systems projects that are directed by the following individuals: (1)
Dr. Thomas Novack, University of Alabama--Birmingham, AL, (205) 934-
3454; (2) Dr. Karyl Hall, Santa Clara Valley Medical Center--San Jose,
CA, (408) 295-9896; (3) Dr. Gale Whiteneck, Craig Hospital--Englewood,
CO, (303) 789-8204; (4) Dr. Anthony Stringer, Emory University--
Atlanta, GA, (404) 712-5667; (5) Dr. Mel B. Glenn, The Spaulding
Rehabilitation Hospital--Boston, MA, (617) 720-6821; (6) Dr. Mitchell
Rosenthal, Wayne State University/Rehabilitation Institute of
Michigan--Detroit, MI, (313) 745-9769; (7) Dr. James F. Malec, Mayo
Foundation--Rochester, MN, (507) 255-5199; (8) Dr. Mark Scherer,
Mississippi Methodist Rehabilitation Center--Jackson, MS, (601) 364-
3490; (9) Dr. Brick Johnstone, University of Missouri--Columbia, MO,
(573) 882-6290; (10) Dr. Mark V. Johnston, Kessler Medical
Rehabilitation Research and Education Corporation--West Orange, NJ,
(973) 414-4734; (11) Dr. Flora Hammond, Charlotte-Mecklenburg Hospital
Authority--Charlotte, NC, (704) 355-4300; (12) Dr. John Corrigan, Ohio
State University--Columbus, OH, (614) 293-3830; (13) Dr. Randall M.
Chestnut, Oregon Health Services University--Portland, OR, (503) 494-
4314; (14) Dr. John Whyte, Moss Rehabilitation Research Institute--
Philadelphia, PA, (215) 456-9597; (15) Dr. Walter High, Jr., The
Institute for Rehabilitation and Research--Houston, TX, (713) 666-9550;
(16) Dr. Jeffrey S. Kreutzer, Medical College of Virginia--Richmond,
VA, (804) 828-9055; and (17) Dr. Sureyya S. Dikmen, University of
Washington--Seattle, WA, (206) 685-7529; and
Once a year, participate in the TBI Model Systems project
directors' meeting.
Rehabilitation Research and Training Centers
The authority for RRTCs 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.
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 requirements will be assessed
using applicable selection criteria in the peer review process:
The RRTC must provide: (1) applied research experience; (2)
training on research methodology; and (3) training to persons with
disabilities and their families, service providers, and other
appropriate parties in accessible formats on knowledge gained from the
Center's research activities.
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.
[[Page 40160]]
Priority 1: Employment Opportunities for American Indians
Background. On August 1, 1997, the U.S. population of American
Indians, including Alaskan Native and Aleut, was 2.3 million. This
population has the highest rate of disability of any racial or ethnic
group. One in three American Indians aged 15 and over reports having a
disability; about one in seven reports having a ``severe'' disability.
One in two American Indians aged 65 or over has a severe disability
(U.S. Department of Commerce, Bureau of the Census, Census Facts For
Native American Month, October, 1997). American Indians have the
highest unemployment rates, the lowest family incomes, and highest
percentage of people living below the poverty level (U. S. Department
of Commerce, Bureau of the Census, Current Population Reports, Special
Studies Series, P 23-189, pg. 51, July, 1995). The nation's several
hundred reservations have a 50 percent average unemployment rate (Kalt,
J. ``Development Strategies for American Indians,'' Social Policy
Research Bulletin, pg. 21, fall, 1996).
In addition, American Indians have the most severe health problems
of all U.S. groups, including the shortest life expectancy and highest
infant mortality rate. American Indians experience alcohol and
substance abuse, sensory impairment, diabetes mellitus, learning
disabilities, fetal alcohol syndrome, and accidents and injuries at
alarming rates when compared to the general population (U.S. General
Accounting Office, Indian Health Service, Basic Services Mostly
Available; Substance Abuse Problems Need Attention, GAO/HRD-93-48,
April, 1993). American Indians have the nation's highest school dropout
rates and the lowest postsecondary attainment rates. Only 66 percent of
American Indians have high school diplomas, compared to a 78 percent
rate for whites and Asian-Americans (U. S. Department of Education,
Office of Educational Research and Improvement, National Assessment of
Vocational Education, Final Report to Congress, Volume IV Access to
Programs and Services for Special Populations, pg. 70, July, 1994).
Although some data on employment and on disability are available,
there is little specific information on employment of American Indians
with disabilities. In addition, although general disability rates are
available for this population, there is little information on the
distribution of disability within the population. Many factors may have
an impact on the employment status of, and the delivery of, employment
services to American Indians with disabilities. These factors include,
but are not limited to health status, poverty, educational level, and
availability of culturally relevant vocational rehabilitation services.
State vocational rehabilitation (VR) agencies provide employment
services to American Indians with disabilities who meet the eligibility
criteria for the Vocational Rehabilitation Services Program authorized
by the Rehabilitation Act of 1973 (the Act). In 1996, VR agencies
assisted approximately 1600 American Indians with disabilities to
achieve an employment outcome. However, data from the Rehabilitation
Services Administration (RSA) indicate that American Indians served
under the program achieve employment outcomes at a lower rate compared
to other populations receiving vocational rehabilitation services (RSA
Case Service Reports, RSA-911, 1991-1996).
Geographic, cultural, language, and political factors affect the
ability of State agencies to deliver services to this population,
particularly those individuals residing on reservations. Approximately,
one-third of American Indians live on reservations or trust lands. Most
reservations have populations of less than one thousand and are located
in rural areas. Many of these Indian communities are in isolated areas
where poor roads and populations spread out over many miles. In
addition, tribes are often sovereign political entities with specific
powers of self-governance, thus affecting access to populations on
reservations.
In recognition of this problem, Congress amended the Act in 1978 to
authorize grants for American Indian Vocational Rehabilitation Service
Projects (Section 130 Projects) to support tribal vocational
rehabilitation programs. These discretionary grant projects, also
administered by RSA, are awarded to the governing bodies of Indian
tribes located on Federal and State reservations to provide VR services
for American Indians who are individuals with disabilities residing on
reservations. There are currently 39 such projects.
Nearly two-thirds of American Indians live in urban areas. Much of
the urban Indian population is assimilated and dispersed throughout
urban census tracts, making it difficult for Vocational Rehabilitation
agencies to identify and serve this population (The National Urban
Indian Policy Coalition, Report to the White House Domestic Policy
Council, April, 1995). The lack of culturally sensitive definitions of
disability in national data collection efforts, such as the National
Health Interview Survey or the Survey of Income and Program
Participation, further complicates this problem.
Cultural and language barriers significantly impede delivery of
employment services, including vocational rehabilitation programs.
There are 557 federally recognized tribes, speaking about 200 languages
and dialects. Cultural barriers affect knowledge, understanding, and
acceptance of disability and contemporary medical and health practices.
In addition, concepts such as self-sufficiency, self-determination and
self-advocacy may have very different meanings across Indian cultures.
Priority 1: The Secretary will establish an RRTC to improve the
employment status of American Indians with disabilities. The RRTC
shall:
(1) Investigate and analyze existing data, demographic and other,
relevant to disability and employment outcomes and recommend
methodological improvements to enhance the usefulness and
comprehensiveness of such data for the purpose of planning and
evaluating employment services, including vocational rehabilitation
services (as set forth in 34 CFR 361.48), for Indians with
disabilities;
(2) Analyze existing employment and vocational rehabilitation
service strategies for American Indians with disabilities and identify
those that have produced successful employment outcomes, taking into
consideration the actual employment opportunities that exist on and off
the reservation, and examine how these strategies might be applied to
the Section 130 Projects;
(3) Develop and evaluate model employment services, including
vocational rehabilitation services, for American Indians with
disabilities, incorporating best practices from the review of existing
services, taking into account cultural issues and reflecting needs of
American Indians on and off the reservations as well as the Section 130
Projects; and
(4) Disseminate both the recommendations for data collection
improvements and the results of the evaluation of model employment
services to a range of relevant audiences, using appropriate accessible
formats.
In carrying out the purposes of the priority, the RRTC must:
As appropriate, carry out separate analyses for Indians
with disabilities who live on the reservation and for those who live
off the reservation; and
Collaborate with the Section 130 Projects, and coordinate
with the
[[Page 40161]]
Rehabilitation Services Administration, the Bureau of Indian Affairs
and the Indian Health Service, the RRTC on Disability Statistics, and
other entities carrying out related research or training activities.
Priority 2: Community Integration for Persons With Mental Retardation
Background. Since 1965, NIDRR has supported research and
demonstrations in the area of developmental disabilities, particularly
in the area of mental retardation. During these years, researchers have
addressed issues involving deinstitutionalization, special education,
transition from school to work, supported employment and the overall
supports persons with mental retardation need to live in the community.
Based on the 1994-1995 National Health Interview Survey-Disability
Supplement 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 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. Until the Disability
Supplement survey was conducted, information was not available about
individuals with mental retardation who are not participants in
specialized programs, but live in the community with their families or
on their own.
Many persons with mental retardation and their families receive
long-term services and supports through State developmental disability
authorities (SDDAs) that are funded primarily by the State or Federal
Medicaid program. According to the results of a recent membership
survey conducted by the National Association of State Directors of
Developmental Disabilities Services (NASDDS), many SDDAs are currently
designing or launching large scale system change initiatives. This is
due, in part, to Medicaid reforms, managed care initiatives and budget
constraints. Seventy-one percent of the respondents said that cost
containment is a major factor prompting system change. The initiatives
differ in their specifics but share several common themes:
decentralizing authority to local managing entities; shifting to less
categorical budgeting; promoting greater flexibility in the purchase
and provision of community services and supports; and embracing self
determination to define a new relationship between the system and
individuals and their families (NASDDS, Community Services Reporter,
pg. 3, Jan, 1998).
Since 1981, the Medicaid Home and Community Based Services (HCBS)
waiver has facilitated flexibility and service innovation. HCBS waivers
afford States the flexibility to develop and implement creative
alternatives to placing Medicaid eligible individuals in facilities
such as nursing homes. The HCBS waiver program recognizes that many
individuals at risk of being placed in a long-term care facility can be
supported in their own homes and communities, preserving their
independence and ties to family and friends at a cost no higher than
that of institutional care. Services that may be provided in HCBS
waiver programs are case management, homemaker services, home health
aide services, personal care services, adult day health services,
habilitation, and respite care. Other services States may request
include transportation and meal services. States have the flexibility
to design each waiver program and select the mix of waiver services
that best meet the needs of the population they wish to serve. HCBS
waiver services may be provided statewide or may be limited to specific
geographic subdivisions.
However, in the last several years, States have attempted to
contain Medicaid spending through the application of managed care
approaches. Long-term care services, including Medicaid-funded
intermediate care facilities for persons with mental retardation and
HCBS waiver services for persons with mental retardation, account for
35 percent of all Medicaid spending. Programs serving persons with
mental retardation are not likely to be exempt from these cost
containment measures (Center on Human Policy, Information Package on
Managed Care and Long-term Supports for People with Developmental
Disabilities, pg. 3, June, 1997).
There is little information available on the use and outcomes of
managed care practices in providing long-term supports to persons with
mental retardation. Currently, States are implementing various models
to consolidate health and long-term care services under one managed
care organization. This approach is intended to be cost-effective and
improve service coordination. Under some of these models, support
networks for persons with mental retardation that now stand alone,
could become subspecialty branches of larger care delivery systems
(Ashbaugh, J. and Smith, G., ``MCARE Policy Brief,'' Integration of
Health and Long-term Care Services: A Cure in Search of and Illness,''
No. 1, pg. 12, 1997). Some observers have voiced concern that the use
of consolidated models may lead to reduced funding for services.
Organizations representing persons with mental retardation have
proposed integrated models that combine under a single umbrella
organization, health and long-term supports in a configuration uniquely
suitable for this population.
Emerging practice suggests that people with mental retardation
should play leading roles in determining the substance of their lives
and that services should be developed as needed to support their
preferences. For example, some current service delivery models may
provide new options for individuals and their families to self manage
their chosen services through vouchers, individual budgets or cash. The
field is moving past traditional service delivery approaches to become
more responsive to the demands of service recipients and to promote
self determined lifestyles. Services developed around the specific
needs and choices of an individual may produce better outcomes and cost
savings.
There are a number of emerging models for system redesign.
Participant driven managed supports refer to a variety of strategies
for administering systems to increase their effectiveness and
efficiency, while maintaining a commitment to community integration and
self determination (Agosta, J., et al., ``MCARE Policy Brief,''
Developmental Disability Services at the Century's End: Facing the
Challenges Ahead, No. 2, pg. 4, 1997). The consumer managed care
approach assumes that consumers with limited budgets will spend more
prudently in order to get the most value for their money and increase
their use of natural supports in lieu of public supports. Accordingly,
consumer choice will spawn a competitive market economy where those
providers representing the most value to all consumers will survive
(Smith, G. and Ashhbaugh, J., Managed Care and People with
Developmental Disabilities: A Guidebook, pg. 8, 1996).
Coupled with States' efforts toward containment of long-term care
costs, most States have long waiting lists for services. Waiting lists
are expected to grow in the future due to increased longevity and
higher expectations of families. After examining state-by-state data
regarding the status of requests for residential, day care, vocational
and other community support services, a 1997 Arc study found that
218,000 requests for community based support services remained
unanswered. In addition to individuals living in institutions and
nursing homes, these waiting lists include students exiting
[[Page 40162]]
from special education programs and individuals living at home with
caregivers. There is a need to understand the methods and procedures
that States are using to provide community based services, as well as
to identify ways in which service systems can be redesigned to better
respond to the needs of persons with mental retardation and their
families.
Residential direct care providers (e.g., group home staff members,
foster family members, roommates in supported living arrangements) are
the primary providers of support, training, supervision and personal
assistance to persons with mental retardation in home and community
settings (Larson, S. A., et al., ``Residential Services Personnel,''
Challenges for a Service System in Transition, pg. 313, 1994). In
community residential settings, there have been few attempts to study
the effects of staff orientation and in-service training programs on
important outcomes for persons with mental retardation as well as on
direct service personnel (Larson, S. A., ibid., pg. 326). As the
service delivery system changes, training for these providers will be
essential. In addition, it will be important to determine what training
efforts contribute to the desired outcomes of fuller community
participation and autonomy for persons with mental retardation.
Priority 2: The Secretary will establish an RRTC to improve
community integration outcomes for individuals with mental retardation.
The RRTC shall:
(1) Investigate effective and cost-beneficial approaches to assist
families to support members with mental retardation at home, or in
homes of their own;
(2) Describe and analyze efforts to redesign policy and services in
selected state systems serving persons with mental retardation and
their families;
(3) Identify and analyze State policies and practices in the
management of Medicaid resources that foster or impede access to
supports and services;
(4) Identify and analyze policies that foster or impede (e.g.,
result in individuals being placed on waiting lists for community-based
services) the full participation and integration of persons with mental
retardation into their communities;
(5) Analyze the outcomes of the implementation of consumer-
controlled services, personal assistance, and individual control-of-
service purchasing in areas of quality of life and cost effectiveness;
and
(6) Identify outcomes of training for residential direct care
providers and the long-term costs and benefits of specific training
strategies.
In carrying out the purposes of the priority, the RRTC must
coordinate with research and demonstration activities sponsored by the
Health Care Financing Administration, the Administration on
Developmental Disabilities, the Office of Disability, Aging, and Long-
term Care Policy in the Department of Health and Human Services, and
other entities carrying out related research or training activities.
Priority 3: Policies Affecting Families of Children With Disabilities
Background. The 1992 National Health Interview Survey (NHIS)
estimates that 4 million children and adolescents, or 6.1 percent of
the U.S. population under 18 years of age, have disabilities. The NHIS
broadly defines disability to include any limitation in activity due to
a chronic health condition or impairment. Among children under age
five, 2 percent are limited in play activities and among children 5-17,
5.5 percent have school related disabilities. In addition, the NHIS
estimates that 3.8 million families, or 5.5 percent of all families,
contain one or more children with disabilities.
Families of children with disabilities must interact with at least
three large service systems: health care, human and social services,
and educational systems. It is often difficult to assess the impact of
policies, service systems, and service delivery practices because the
organizational structures and the services provided under the auspices
of public and private institutions vary. The integration and
coordination of these systems can be inferred from the patterns of
interagency relationships involving client referrals, information flows
and resource exchanges (Morrissey, J. P., et al., ``Methods for System-
Level Evaluations of Child Mental Health Service Networks'' Outcomes
for Children and Youth with Behavioral and Emotional Disorders and
Their Families: Programs and Evaluation Best Practices, pg. 299, 1998).
For the purposes this priority, the policies affecting families of
children with disabilities include, but are not limited to, those in
the areas of health care (including mental health), human and social
services (including legal systems such as juvenile services), and
public and private education.
Families who have children with disabilities often need assistance
with accessing and financing services, information about caring for
their child, support from other families, community based respite care,
and case management services. Case management services are intended to
ensure that services are delivered in an effective and efficient
manner. Numerous models of case management currently exist. However,
there is little extant research on the effectiveness, either at the
family or system level, of case management services for families who
have children with disabilities.
Numerous methodological problems limit the study of the complex
service systems surrounding children with disabilities and their
families. Current methods of measuring service coordination and
examining roles in service delivery systems are not structured to
assess the needs of children and their families (Koren, P. E., et al.,
``Service Coordination in Children's Mental Health: An Empirical Study
from the Caregivers Perspective,'' Journal of Emotional and Behavioral
Disorders, 5(3), pg. 164, 1997). Measurement issues become even more
complex when the focus of a study moves from the individual and family
level to the State and local service system level or when policy
analysis is required. There is currently a shortage of methods for
assessing the interrelationship between Federal, State, and local
policy, service systems, and outcomes for families of children with
disabilities. The limited availability of data and methodological tools
needed for scientific measurement of the impact of systemic and policy
reforms on families of children with disabilities serves as a barrier
to increasing our understanding of the relationship between policy and
outcomes. Recent major changes in Federal policies for social services,
child care, family preservation and support services, and related
educational and health care services may be having profound impacts
upon these families.
Changes at the Federal level may be having an impact at the State
and local level. However, little is known or documented about the
effects of Federal policy changes on State and local service systems
and families of children with disabilities.
Under new Federal and State legislation, States have more
flexibility to administer human service programs. Policymakers and
legislators have new opportunities to shape integrated and flexible
programs to better serve the needs of families and their children with
and without disabilities. Some States are experimenting with a
decategorization of State and Federal funding streams so that local
communities can reshape their service systems through the use of
vouchers. Some State and local agencies are conducting demonstrations
of family
[[Page 40163]]
support programs that decentralize public services for families of
children with disabilities.
The impact of devolution from a system with authority at the
Federal level and management of public services at the State level, to
a system of both authority and management at the local level has not
been documented. Information is needed on these practices and other
interventions, the family benefits associated with these policies and
practices, and the consequences of practice and policy change in order
to facilitate implementation of policies and programs that are
sensitive to the needs of families of children with disabilities and to
promote effective models of care for families of children with
disabilities.
In addition to policy changes in the social services arena, health
care systems are changing rapidly the way they provide services to
consumers. Families of children with disabilities, and the health care
providers that serve them, are facing many challenges that differ from
the coverage and access issues that are present for the general
population. Even families of children with disabilities that use few
medical services often require special knowledge or accommodations when
they do access the health care system. Many States have little or no
experience in assuring that their health care providers meet the
specialized needs of families of children who have disabilities. These
challenges are further complicated by the high cost of services for
children with disabilities.
Among children enrolled in Medicaid, the average per-person health
care costs in 1992 were seven times higher for disabled than
nondisabled children. Compared with nondisabled children in the general
population, some disabled children use twice as many physician visits
and five times as many ancillary services, such as physical therapy.
Under current policies and practices, the potential exists to use
medical necessity standards to prevent disabled children from receiving
therapy or equipment when they need it to maintain existing levels of
functioning (U.S. General Accounting Office, Medicaid Managed Care:
Serving the Disabled Challenges States Programs, (GAO/HEHS Publication
No. 96-136) pg. 16, 1996). Research is needed on health care policies
and service delivery practices in order to develop long-term strategies
to remove service delivery barriers that exist in the health care
system and to facilitate establishment of policies that support access
to services for families of children with disabilities.
Frequently, children with disabilities who are participating in
special education programs and their families have needs that are
addressed by health care or social service agencies. As public schools'
regular and special education programs restructure, opportunities may
arise to expand successful service delivery strategies and develop new
ones to fill in existing gaps in the service delivery systems. The
development of integrated, community-based services for children with
disabilities and their families is an essential component of this
reform effort (Duchnowski, A. J., et al., ``Integrated and
Collaborative Community Services in Exceptional Student Education,''
Special Education Practice: Applying the Knowledge, Affirming the
Values and Creating the Future, pgs. 177-188, 1997).
Many communities have begun initiatives to create more responsive
family-centered service delivery systems. Mechanisms for interagency
coordination at the State and local levels are necessary to ensure
optimal service delivery conditions. Service coordination should
involve linkages between education agencies, health care systems, and
social services systems. In addition, due to the changing demographics
of society, little is known about the influence of culture, ethnicity
and socioeconomics on how families seek and receive services for their
children with disabilities.
Basic information sharing, coordination and collaboration between
agencies that provide services to families of children with
disabilities is limited. There is a need to evaluate current best
practices in service delivery coordination and collaboration, develop a
methodology for analyzing collaboration among agencies, establish
principles for coordination and collaboration, and develop performance
indicators that foster partnerships.
Priority 3: The Secretary will establish an RRTC to assess the
impact of policies on service delivery and outcomes for families of
children with disabilities. The RRTC shall:
(1) Develop an analytical framework, including tools for assessing:
family characteristics and policies, structure of service systems,
service delivery processes, interagency coordination and collaboration,
and outcomes for families with disabled children;
(2) Using the methodology developed above, determine the
effectiveness of specific policies, implementation strategies, service
delivery procedures, and coordination practices in meeting the needs of
families of children with disabilities;
(3) Identify the impact of specific characteristics of interagency
collaboration and coordination on families of children with
disabilities; and
(4) Assess the impact of specific policies on access to services of
families from diverse cultural, linguistic, ethnic and socioeconomic
backgrounds.
In carrying out these purposes, the RRTC must:
Disseminate materials and coordinate research and training
activities with the Maternal and Child Health Bureau, the
Administration on Developmental Disabilities, the Office of Policy and
Planning in the Department of Health and Human Services, the Office of
Special Education, the Federal Interagency Coordinating Council, and
other entities carrying out related research or training activities;
and
Establish practical statistical methodologies and
measurement tools that specifically assess the policies affecting
families of children with disabilities.
Electronic Access to This Document
Anyone may view this document, as well as all other Department of
Education documents published in the Federal Register, in text or
portable document format (pdf) on the World Wide Web at either of the
following sites:
http://ocfo.ed.gov/fedreg.htm
http://www.ed.gov/news.html
To use the pdf you must have the Adobe Acrobat Reader Program with
Search, which is available free at either of the preceding sites. If
you have questions about using the pdf, call the U.S. Government
Printing Office at (202) 512-1530 or, 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.
Program Authority: 29 U.S.C. 760-762.
(Catalog of Federal Domestic Assistance Numbers 84.133B,
Rehabilitation Research and Training Centers)
Dated: July 22, 1998.
Judith E. Heumann,
Assistant Secretary for Special Education and Rehabilitative Services.
[FR Doc. 98-20009 Filed 7-24-98; 8:45 am]
BILLING CODE 4000-01-P
