[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]]

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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__N[email protected]
    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.

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    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