[Federal Register: February 23, 2000 (Volume 65, Number 36)]
[Notices]
[Page 9181-9186]
From the Federal Register Online via GPO Access [wais.access.gpo.gov]
[DOCID:fr23fe00-105]
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Part VI
Department of Education
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National Institute on Disability and Rehabilitation Research; Notice of
Proposed Funding Priorities for Fiscal Years (FY) 2000-2001 for
Rehabilitation Research and Training Centers (RRTCs); Notice
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DEPARTMENT OF EDUCATION
National Institute on Disability and Rehabilitation Research;
Notice of Proposed Funding Priorities for Fiscal Years (FY) 2000-2001
for Rehabilitation Research and Training Centers (RRTCs)
AGENCY: Office of Special Education and Rehabilitative Services,
Department of Education.
SUMMARY: The Assistant Secretary for the Office of Special Education
and Rehabilitative Services proposes funding priorities for three
Rehabilitation Research and Training Centers (RRTCs) under the National
Institute on Disability and Rehabilitation Research (NIDRR) for FY
2000-2001. This notice contains proposed priorities for one RRTC
related to rehabilitation for persons with long-term mental illness and
two RRTCs related to independent living. The Assistant 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. The proposed priorities
refer to NIDRR's Long Range Plan (the Plan). The plan can be accessed
on the World Wide Web at: http://www.ed.gov/legislation/FedRegister/
other/1999-12/68576.htm
DATES: Comments must be received on or before March 24, 2000.
ADDRESSES: All comments concerning these proposed priorities should be
addressed to Donna Nangle, U.S. Department of Education, 400 Maryland
Avenue, S.W., room 3414, Switzer Building, Washington, D.C. 20202-2645.
Comments may also be sent through the Internet: Donna__Nangle@ed.gov
You must include the term ``Disability and Rehabilitation Research
Projects and Centers'' in the subject line of your electronic message.
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) 205-4475. 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:
Invitation To Comment
We invite you to submit comments regarding these proposed
priorities.
We invite you to assist us in complying with the specific
requirements of Executive Order 12866 and its overall requirement of
reducing regulatory burden that might result from these proposed
priorities. Please let us know of any further opportunities that we
should take to reduce potential costs or increase potential benefits
while preserving the effective and efficient administration of the
program.
During and after the comment period, you may inspect all public
comments about this priority in room 3414, Switzer Building, 330 C
Street, SW., Washington, DC, between the hours of 9 a.m. and 4:30 p.m.,
Eastern time, Monday through Friday of each week except Federal
holidays.
Assistance to Individuals With Disabilities in Reviewing the
Rulemaking Record
On request, we will supply an appropriate aid, such as a reader or
print magnifier, to an individual with a disability who needs
assistance to review the comments or other documents in the public
rulemaking record for these proposed priorities. If you want to
schedule an appointment for this type of aid, you may call (202) 205-
8113 or (202) 260-9895. If you use a TDD, you may call the Federal
Information Relay Service at 1-800-877-8339.
These proposed 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. 762(g) and 764). Regulations governing this program
are found in 34 CFR part 350.
We will announce the final priorities in a notice in the Federal
Register. We will determine the final priorities after considering
responses to this notice and other information available to the
Department. This notice does not preclude us from proposing or funding
additional priorities, subject to meeting applicable rulemaking
requirements.
Note: This notice does not solicit applications. In any year in
which the Assistant Secretary chooses to use any of these proposed
priorities, we invite applications through a notice published in the
Federal Register. When inviting applications we designate each
priority as absolute, competitive preference, or invitational.
Rehabilitation Research and Training Centers
The authority for the RRTC program is contained in section
204(b)(2) of the Rehabilitation Act of 1973, as amended (29 U.S.C.
764(b)(2)). 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 Assistant Secretary may make awards for up to 60 months
through grants or cooperative agreements. The purpose of the awards is
for planning and conducting research, training, demonstrations, and
related activities leading to the development of methods, procedures,
and devices that will benefit individuals with disabilities, especially
those with the most severe disabilities.
Description of Rehabilitation Research and Training Centers
RRTCs are operated in collaboration with institutions of higher
education or providers of rehabilitation services or other appropriate
services. RRTCs serve as centers of national excellence and national or
regional resources for providers and individuals with disabilities and
the parents, family members, guardians, advocates or authorized
representatives of the individuals.
RRTCs conduct coordinated, integrated, and advanced programs of
research in rehabilitation targeted toward the production of new
knowledge to improve rehabilitation methodology and service delivery
systems, to alleviate or stabilize disabling conditions, and to promote
maximum social and economic independence of individuals with
disabilities.
RRTCs provide training, including graduate, pre-service, and in-
service training, to assist individuals to more effectively provide
rehabilitation services. They also provide training including graduate,
pre-service, and in-service training, for rehabilitation research
personnel and other rehabilitation personnel.
RRTCs serve as informational and technical assistance resources to
providers, individuals with disabilities,
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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.
Proposed Priority 1: Long-term Mental Illness
Background
The Surgeon General estimates that approximately 20 percent of the
U.S. population experience a mental disorder in any given year, that 9
percent of the adult population have a diagnosable major mental
illness, and that a subpopulation of 5.4 percent of the population is
considered to have a significant mental illness (Kessler, et. al. 1994,
1996). The costs to society of mental illness are substantial. The
indirect costs of mental illness in 1990, stemming from lost
productivity at work, school, or home, were estimated at $78.6 billion
(Rice and Miller, 1996). As the population grows, the needs of a
growing number of individuals with a significant mental illness are not
being met. Only one in four adults with a diagnosable mental disorder
receives treatment and one third of children and adolescents needing
mental health services are treated (Manderscheid & Henderson, 1998).
The lives of individuals with long-term mental illnesses are
complicated by inadequate community resources, lack of access to new
medications and psychosocial treatments, unemployment, and lack of
options for long-term care. Many individuals also experience
homelessness, family disruptions, chronic medical conditions, alcohol
and substance abuse, incarceration, and social isolation, as well as
the potential for periodic exacerbation.
Quality is an important factor in the delivery of effective mental
health services. Defining quality services is not an easy task, nor is
there ready consensus on all components of the concept. The Institute
of Medicine states that quality of services is ``the degree to which
health services for individuals and populations increase the likelihood
of desired health outcomes and are consistent with current professional
knowledge'' (Marder, 1999). However, measuring the quality of services
provided to individuals with significant mental illness, as well as
measuring outcomes, present numerous challenges because of the periodic
and chronic nature of the illness, and the ongoing need for intensive
therapeutic services and long-term support. Practitioners, policy
makers, and consumers continue to ask questions about how to adequately
meet the multifaceted needs of individuals with significant mental
illness.
Generally, family members and consumers want community-based
support services and treatment programs that are accessible and
designed to meet long-term needs. The potential for individuals with
serious mental illness to be maintained in the community rather than in
institutions, work productively, live independently, and participate in
rehabilitation planning is increased when a comprehensive support
system is available in community settings. Research on consumer
participation and community-based programs has provided evidence that
there is a positive relationship between the level of consumer
participation and therapeutic outcomes (Kent & Read, 1998).
Proponents of community-based service programs and support systems
long have advocated that consumers be empowered to participate in the
decisionmaking process. However, one reason individuals with
disabilities have limited opportunities to participate in decisions
about their services are related to the lack of consensus on a
definition for self-determination. Self-determination is defined and
implemented differently (Ward, 1999) depending on the program,
philosophy, and purposes for implementing a self-determination model.
However, there are some common concepts in the definitions for self-
determination; NIDRR includes factors such as consumer control, choice,
self-direction, empowerment, leadership, and self-advocacy (Ward &
Roger, 1999) as potential elements of self-direction. While most mental
health professionals support the concept of self-determination, not all
agree that individuals with psychiatric disabilities should have
control over or participate in planning and decisionmaking activities
(Kent & Read, 1998).
Individuals with psychiatric disabilities are not yet full
participants in the disability self-determination movement. It is
widely alleged that professionals in the psychiatric disabilities
community continue to use medical compliance as a control mechanism and
as a determining factor for awarding patients certain privileges. The
right to choose among treatment options is often regarded as a
privilege that is earned through medical compliance (Chamberlain &
Powers, 1999).
Obstacles to the development and implementation of self-
determination efforts include controversy over whether severe mental
illness is a lifelong process or whether recovery is possible. Some
discussants of this issue suggest that the need for extensive, lifelong
support and the severity of the illness preclude using a self-
determination approach. In addition, the impact of self-determination
approaches on quality of services are unknown. Methodologies,
indicators, and standards for measuring quality of care within self-
determination models would facilitate understanding the impact of this
approach on rehabilitation outcomes. In particular, research that
addresses questions about the ability of individuals with serious
mental illnesses to make decisions about treatment and medication
management is lacking. Traditionally, program planning and treatment
decisions in the mental health field have been made by clinicians, and
often involve maintaining patients on medication without consumer input
or choice.
Policies and service systems tend to be based on a paternalistic
model that restricts consumer control and input. However, there is
evidence that consumer and family involvement in decisionmaking and
program planning have the potential to foster higher quality services
and responsiveness from providers. The effectiveness service models
incorporating self-determination and their relationship to
rehabilitation outcomes has not been evaluated. There has not been
adequate study of the impact of elements of self-determination models
on the rehabilitation process. Similarly, there have not been adequate
studies of the impact of the various components of self-determination
models on the rehabilitation process.
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Better understanding of the implications of self-determination for
rehabilitation outcomes potentially will answer questions related to
competency, patient rights, recovery, outcomes, and policies. Research
addressing these issues, describing standards for quality, and
establishing outcome measures for consumer driven decisions is lacking
in the research literature. Studies evaluating self-determination will
potentially further the understanding of the rehabilitation process for
individuals with significant mental illness, and identify strengths,
weaknesses, and needed improvements in the existing models.
The Plan emphasizes the importance of independent living and
community integration. Central to independent living is the recognition
that each individual has a right to independence that comes from
exercising maximal control over his or her life. These activities
include making decisions involved in managing one's own life,
sustaining the ability and opportunity to make choices in performing
everyday activities, and minimizing physical and psychological
dependence on others. Independent living is a concept that also
emphasizes participation and equity in the right to share in the
opportunities, risks, and rewards available to all citizens.
Proposed Priority 1: Improving Service and Supports for Individuals
with Long-Term Mental Illness
The Assistant Secretary, in collaboration with the Substance Abuse
and Mental Health Services Administration and the Center for Mental
Health Services, proposes to establish an RRTC for the purpose of
improving services and supports for individuals with long-term mental
illness. In carrying out these purposes, the Center must:
(1) Develop measures that can be applied to evaluate self-
determination activities in terms of rehabilitation outcomes, quality
of services, and availability of community resources;
(2) Identify and assess self-determination direction theories,
models, and activities, as well as the barriers to participation in
self-determination activities for individuals with disabilities;
(3) Develop and evaluate management tools to enable service
providers to support self-determination;
(4) Develop, conduct, and evaluate, training on self-determination
and consumer choice to improve understanding and support of self-
determination; and
(5) Assess policies of service providers and payers in terms of
their implications for fostering or impeding self-determination, and
identify strategies for policy improvements.
In addition to the activities proposed by the applicant to carry
out these purposes, the RRTC must:
(1) Conduct in the third year of the grant, a state-of the-science
conference on self-determination for persons with significant and
persistent mental illness and publish a comprehensive report in the
fourth year of the grant; and
(2) Address in its research the specific needs of minority
populations with LTMI.
Two Proposed Priorities on Independent Living
Background
The mission of NIDRR emphasizes developing knowledge that will
``improve substantially the options for disabled individuals to perform
regular activities in the community, and the capacity of society to
provide full opportunities and appropriate supports for its disabled
the Plan, published on December 7, 1999 (64 FR 68575)).'' Much of
NIDRR's work reflects the components of the Independent Living (IL)
philosophy: consumer control, self-help, advocacy, peer relationships
and peer role models, and equal access to society, programs, and
activities. NIDRR has funded subject-specific RRTCs in IL since 1980
and supports other projects that incorporate principles of IL.
Most recently, NIDRR has funded one RRTC on Centers for Independent
Living (CIL) management and services and a second on IL and disability
policy. The last year of the five-year project period for the awards
was 1999. In light of the research agenda established in the Plan, and
input obtained from the Rehabilitation Services Administration (RSA)
and other Federal agencies and constituents, in various meetings that
addressed related themes, NIDRR has identified critical issues in
independent living to be addressed at this time. There is a continuing
need to fund two Centers that study independent living and community
integration.
Living independently and achieving community integration to the
maximum extent possible are issues at the crux of NIDRR's mission.
NIDRR is committed to the creation of a theoretical framework with
measurable outcomes that is based upon the experiences of individuals
with disabilities. The new paradigm of disability embodied in the Plan
requires analysis of the extent to which socioenvironmental factors
help or hinder individuals with disabilities in attaining full
participation in society. Questions as basic as defining independent
living in the context of diverse socioeconomic factors must be
addressed. Current challenges to independent living derive from the
changing characteristics of both the IL service system and the
disability population.
Substantial administrative, advocacy, strategic and service-
delivery issues affect the daily activities of Centers for Independent
Living (CILs). Critical issues include funding and resource management,
quality staffing, and relationships with other agencies key to the
success of CILs. The issue of financial management of CILs calls for a
balanced approach to identify existing policies, regulations, models,
and programs that serve to hinder or help in establishing sound fiscal
operation. Financial management requires expertise in fiscal analysis,
budgeting, understanding grant requirements and program rules,
accounting, auditing, and fundraising.
CILs, which spend substantial amounts of money on personnel, are
subject to staffing problems typical of human service organizations and
small businesses, including recruitment problems, training and
competency development, and retention problems. Staffing problems may
impede the ability of CILs to deliver individualized information and
support services. An essential step in strengthening continuity in
services is to recruit, train, and retain first line managers.
CILs lack documentation of the competencies required for IL
management. Awareness of competency needs is key to developing
successful recruitment strategies and staff development programs. For
example, innovative recruitment strategies are needed to attract youth
with disabilities who are transitioning from school to independent
living to work in CIL service programs. Creative efforts to attract
young persons entering the job market as employees could assist the
CILs in understanding the needs of youth with disabilities as consumers
as well. Career development, with pathways to more responsible
positions in CILs, can be a key to the retention of competent staff.
CILs exist in a framework of public agencies, nonprofit
organizations, and the local business sectors. The ability to form
effective partnerships and cooperative working relationships with
appropriate entities is essential to successful CIL operation.
Historically, relationships with State Vocational Rehabilitation
agencies, Statewide
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Independent Living Councils, and State Consumer Advocacy Organizations
have been at the heart of CIL operations and responsibilities. Recent
developments in the area of employment services and entitlement
benefits for individuals with disabilities pose additional challenges
for CILs by introducing new actors, new clients, and new rules. Passage
of the Workforce Investment Act of 1998 and the Work Incentives
Improvement Act of 1999 might provide new opportunities for CILs to
play a role in the process of vocational rehabilitation.
A challenge to facilitating independent living and community
integration is the changing universe of disability. Demographic, social
and environmental trends affect the prevalence and distribution of
various types of disability as well as the demands of those
disabilities on social policy and service systems. Within the universe
of disabilities are: (1) changing etiologies for existing disabilities;
(2) growth in segments of the population with higher prevalence rates
for certain disabilities; (3) the consequences of changes in public
policy and in health care services and technologies; and (4) the
appearance of new disabilities.
The CILs and consumer organizations can prepare to address changing
needs of diverse populations with attention to the infrastructure of
resource availability and management strategy. At the same time, there
is a need to frame the history and role of the independent living
movement within the context of theories of society and social movements
and organizational and group structure. Such a framework could identify
ways to: (1) reach out to underserved populations, (2) collaborate with
key organizations that might not be perceived as traditional disability
advocates, and (3) recognize the role of environmental factors on
successfully living independently and achieving community integration.
A sound theoretical base can be drawn upon to develop policy and
service-delivery models that can help maximize social participation for
individuals with disabilities.
Researchers have identified an association between disabilities and
poverty, especially among youth (Fujiura G et al., ``Disability Among
Ethnic and Racial Minorities in the United States,'' Journal of
Disability Policy Studies, Vol. 9, No. 2, pgs. 112-130, 1998). The
growing number of individuals aging with long-standing disabilities, as
well as the increase in the population of older persons who acquire
disabilities as they age, is another aspect of a changing disability
population. Newer etiologies of disability, such as HIV/AIDS, multiple
chemical sensitivity and environmental illness, challenge IL concepts,
services, and research. CILs and other organizations can serve as a
resource to teach youth, aging persons, and underserved populations
about independent living. There may be an opportunity for CILs to
develop strong alliances with parent information training centers and
schools (from pre-school through postsecondary programs) and with the
aging and underserved populations through appropriate partnerships.
As an example of the role of demographic factors, disability has a
disproportionate impact upon African Americans, Hispanic Americans, and
American Indians. An array of culturally-sensitive service-delivery
models, community organizations, and other resources is necessary to
provide services to individuals from minority backgrounds.
Organizations with grassroots orientations, including CILs, are in a
unique position to help identify the specific needs of individuals from
those affected populations. Model strategies in other countries might
be adapted to reach unserved and underserved populations in the United
States.
Physical environment, including the built environment, can pose
numerous obstacles that confound living independently. Individuals with
disabilities living in rural communities may be isolated from CILs and
vocational rehabilitation services. Isolation resulting from distance,
lack of available transportation, lack of monetary resources to support
social services, limited job opportunities, lack of a health care
delivery system, and unavailability of accessible and affordable
housing can be problems for rural Americans. Similar problems may
confront persons from minority backgrounds in inner cities and remote
areas, persons who are homeless, and migrants. For all populations, and
for all salient issues that affect independent living and community
integration, the social and economic costs and benefits of various
strategies must be evaluated.
The Plan discusses research on physical inclusion, including the
identification and evaluation of models that facilitate housing that
are consistent with consumer choice. In addition to physical and
economic accessibility, model housing approaches must maximize
community integration and ability to participate in a range of
normative activities.
Proposed Priority 2: Improved Management of CIL Programs and
Services
The Assistant Secretary proposes to establish an RRTC on IL
management, services and strategies that will conduct research and
training activities and develop and evaluate model approaches to
enhance the capacity of CILs to operate and manage effective advocacy
and service programs and maintain effective external partnerships. In
carrying out this purpose, the Center must:
(1) Develop a database of existing CIL funding and economic
resources, and identify innovative and best practices in creating
secure economic foundations for CILs;
(2) Working in collaboration with appropriate entities, design and
test several options for generating funding from alternative sources,
including business development strategies and analyze policy-related
and programmatic consequences of various funding options, especially
those independent of public financing;
(3) Identify best practices and develop and test programs for CILs
in expanding services to youth with disabilities and their families,
including those from diverse cultural backgrounds, and in interfacing
with education and transition programs to prepare children and youth
for independent living;
(4) Develop and test strategies to enable CILs to benefit from
management models of other successful community-based organization or
organizations. Develop and test innovative models of cost-effective
training to improve core competency skills in geographically dispersed
and culturally and linguistically diverse CIL staff, including but not
limited to those from Indian tribes and tribal organizations, and
evaluate strategies for improved recruitment and retention of CIL staff
from diverse backgrounds;
(5) Review CIL and vocational rehabilitation agency policies
related to collaborations, and design strategies for innovative
partnerships to promote employment outcomes for individuals with
disabilities;
(6) Coordinate activities with and provide instruments, curricula,
methodologies, and resource guides, as well as research findings,
including but not necessarily limited to distance learning and web-
based technologies, to the RSA training and technical assistance
provider under Part C of Title VII of the Rehabilitation Act; and
(7) Provide training and information for CILs, policy makers,
administrators, and advocates on research findings and identified
strategies.
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In carrying out these purposes, the Center must coordinate with
other NIDRR and OSERS grantees and community-based organizations that
focus upon independent living and with the National Center for the
Dissemination of Disability Research. The RRTC on improved management
of CIL programs and services will be funded jointly by NIDRR and RSA
and will be required to work closely with the RSA grantee providing
training, technical assistance, and transition assistance to CILs and
Statewide Independent Living Councils under Part C of Title VII of the
Rehabilitation Act.
Proposed Priority 3: IL and the New Paradigm of Disability
The Assistant Secretary proposes to establish an RRTC on IL and the
New Paradigm of Disability that will facilitate the development of
innovative independent living strategies to meet the challenges of the
21st century. This Center will promote an understanding of independent
living concepts and practices in the context of the physical and social
environments noted in the new paradigm of disability, including
assessment of the application of independent living to the changing
universe of disability. In carrying out these purposes, the Center
must:
(1) Develop an analytical framework for research on living
independently that incorporates the definition of IL, the contextual
framework of disability and an accessible community, and the changing
universe of disability as articulated in the Plan, and is grounded in
social science theory and methods;
(2) Identify and evaluate strategies to promote accessible cost-
effective advocacy and generic community services for individuals with
significant disabilities, and address specifically at least one
changing universe population;
(3) Evaluate the use of peer networks and communication channels to
assist individuals with disabilities to maintain wellness, access
community services, and participate in community life;
(4) Assess the concept and application of independent living for
diverse populations of cultural and linguistic minorities, including
but not limited to those from Indian tribes and tribal organizations,
and identify and evaluate culturally appropriate independent living
approaches and strategies to assist individuals within these groups to
attain self-determined independent living goals; and
(5) Provide training and information for CILs, policy makers,
administrators, and advocates on research findings and identified
strategies.
In carrying out these purposes, the project must coordinate with
other NIDRR and OSERS grantees and community-based organizations that
focus on independent living, the Center on Emergent Disability, the
National Center for the Dissemination of Disability Research, and the
RSA training and technical assistance provider under Part C of Title
VII of the Rehabilitation Act.
Applicable Program Regulations: 34 CFR Part 350.
Program Authority: 29 U.S.C. 760-762.
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(Catalog of Federal Domestic Assistance Number 84.133B,
Rehabilitation Research and Training Centers)
Dated: February 17, 2000.
Curtis L. Richards,
Acting Assistant Secretary for Special Education and Rehabilitative
Services.
[FR Doc. 00-4259 Filed 2-22-00; 8:45 am]
BILLING CODE 4000-01-U