[Federal Register Volume 62, Number 73 (Wednesday, April 16, 1997)]
[Notices]
[Pages 18633-18638]
From the Federal Register Online via the Government Publishing Office [www.gpo.gov]
[FR Doc No: 97-9801]
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DEPARTMENT OF HEALTH AND HUMAN SERVICES
Administration for Children and Families
[Program Announcement No. 93631-97-01]
Developmental Disabilities: Request for Public Comments on
Proposed Developmental Disabilities Funding Priorities for Projects of
National Significance for Fiscal Year 1997
AGENCY: Administration on Developmental Disabilities (ADD),
Administration for Children and Families (ACF).
ACTION: Notice of request for public comments on developmental
disabilities tentative funding priority for Projects of National
Significance for Fiscal Year 1997.
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SUMMARY: The Administration on Developmental Disabilities,
Administration for Children and Families, announced that public
comments are being requested on tentative funding priorities for Fiscal
Year 1997 Projects of National Significance prior to being announced in
its final form.
We welcome specific comments and suggestions on this proposed
announcement and funding priority which will assist in bringing about
the increased independence, productivity, integration, and inclusion
into the community of individuals with developmental disabilities.
DATES: The closing date for submission of public comments is June 16,
1997.
ADDRESSES: Comments should be sent to: Bob Williams, Commissioner,
Administration on Developmental Disabilities, Administration for
Children and Families, Department of Health and Human Services, Room
329-D, HHH Building, 200 Independence Avenue, S.W., Washington, D.C.
20201.
FOR FURTHER INFORMATION CONTACT: Adele Gorelick, Program Development
Division, Administration on Developmental Disabilities, 202/690-5982.
SUPPLEMENTARY INFORMATION:
Part I
Background
A. Goals of the Administration on Developmental Disabilities
The Administration on Developmental Disabilities is located within
the Administration for Children and Families, Department of Health and
Human Services (DHHS). Although different from the other ACF program
administrations in the specific constituency it serves, ADD shares a
common set of goals that promote the economic and social well-being of
families, children, individuals and communities. Through national
leadership, we see:
Families and individuals empowered to increase their own
economic independence and productivity;
Strong, healthy, supportive communities having a positive
impact on the quality of life and the development of children;
Partnerships with individuals, front-line service
providers, communities, States and Congress that enable solutions which
transcend traditional agency boundaries;
Services planned and integrated to improve client access;
and
[[Page 18634]]
A strong commitment to working with Native Americans,
individuals with developmental disabilities, refugees and migrants to
address their needs, strengths and abilities.
Emphasis on these goals and progress toward them will help more
individuals, including those with developmental disabilities, to live
productive and independent lives integrated into their communities. The
Projects of National Significance Program is one means through which
ADD promotes the achievement of these goals.
Two issues are of particular concern with these projects. First,
there is a pressing need for networking and cooperation among
specialized and categorical programs, particularly at the service
delivery level, to ensure continuation of coordinated services to
people with developmental disabilities. Second, project findings and
successful innovative models of projects need to be made available
nationally to policy makers as well as to direct service providers.
B. Purpose of the Administration on Developmental Disabilities
The Administration on Developmental Disabilities is the lead agency
within ACF and DHHS responsible for planning and administering programs
which promote the self-sufficiency and protect the rights of
individuals with developmental disabilities.
The Developmental Disabilities Assistance and Bill of Rights Act
(42 U.S.C. 6000 et seq.) (the Act), as amended provides assistance to
States and public and private nonprofit agencies and organizations to
assure that individuals with developmental disabilities and their
families participate in designing, and have access to, culturally
competent services, supports and other assistance and opportunities
that promote independence, productivity and integration and inclusion
into the community.
The Act points out that:
Disability is a natural part of the human experience that
does not diminish the right of individuals with developmental
disabilities to enjoy the opportunity for independence, productivity
and inclusion into the community;
Individuals whose disabilities occur during their
developmental period frequently have severe disabilities that are
likely to continue indefinitely;
Individuals with developmental disabilities often require
lifelong specialized services and assistance, provided in a coordinated
and culturally competent manner by many agencies, professionals,
advocates, community representatives, and others to eliminate barriers
and to meet the needs of such individuals and their families;
The Act further finds that:
Individuals with developmental disabilities, including
those with the most severe developmental disabilities, are capable of
achieving independence, productivity, and integration and inclusion
into the community, and often require the provision of services,
supports and other assistance to achieve such;
Individuals with developmental disabilities have
competencies, capabilities and personal goals that should be
recognized, supported, and encouraged, and any assistance to such
individuals should be provided in an individualized manner, consistent
with the unique strengths, resources, priorities, concerns, abilities
and capabilities of the individual;
Individuals with developmental disabilities and their
families are the primary decision makers regarding the services and
supports such individuals and their families receive and play decision-
making roles in policies and programs that affect the lives of such
individuals and their families; and
It is in the nation's interest for individuals with
developmental disabilities to be employed, and to live conventional and
independent lives in families and communities.
Toward these ends, ADD seeks: to enhance the capabilities of
families in assisting individuals with developmental disabilities to
achieve their maximum potential; to support the increasing ability of
individuals with developmental disabilities to exercise greater choice
and self-determination and to engage in leadership activities in their
communities; and to ensure the protection of legal and human rights of
persons with developmental disabilities.
Programs funded under the Act are:
Federal assistance to State developmental disabilities
councils;
State system for the protection and advocacy of individual
rights;
Grants to university affiliated programs for
interdisciplinary training, community services, technical assistance,
and information dissemination; and
Grants for Projects of National Significance.
Technical assistance to enhance the quality of State
development disabilities councils, protection and advocacy systems, and
university affiliated programs; and
Other projects of sufficient size and scope that hold
promise to expand or improve opportunities for individuals with
developmental disabilities, including:
--technical assistance for developing information and referral systems;
--educating policy makers;
--Federal interagency initiatives;
--enhancing participation of racial and ethnic minorities in public and
private sector initiatives in developmental disabilities;
--transition of youth with developmental disabilities from school to
adult life; and
--special pilots and evaluation studies to explore the expansion of
programs under part B (State developmental disabilities councils) to
individuals with severe disabilities other than developmental
disabilities.
Section 162(d) of the Act requires that ADD publish in the Federal
Register proposed priorities for grants and contracts to carry out
Projects of National Significance. The Act also requires a 60-day
period for public comment on proposed priorities. After analyzing and
considering such comments, ADD must publish in the Federal Register
final priorities and solicit applications for funding based on the
final priorities selected.
The following section presents the proposed priority areas for
Fiscal Year 1997 Projects of National Significance. We welcome specific
comments and suggestions. We would also like to receive suggestions on
timely topics related to specific needs in the development disabilities
field.
Please be aware that the development of the final funding priority
is based on the public comment response to this notice, current agency
and Departmental priorities, needs in the field of developmental
disabilities and the developmental disabilities network, etc., and the
availability of funds for this fiscal year.
Part II
Fiscal Year 1997 Proposed Priority Areas for Projects of National
Significance
ADD is interested in all comments and recommendations which address
areas of existing or evolving national significance related to the
field of developmental disabilities.
ADD also solicits recommendations for project activities which will
advocate for public policy change and community acceptance of all
individuals with developmental disabilities and families so that such
individuals receive the culturally competent services, supports, and
other
[[Page 18635]]
assistance and opportunities necessary to enable them to achieve their
maximum potential through increased independence, productivity, and
integration into the community.
ADD is also interested in activities which promote the inclusion of
all individuals with developmental disabilities, including individuals
with the most severe disabilities, in community life; which promote the
interdependent activity of all individuals with developmental
disabilities and individuals who are not disabled; and which recognize
the contributions of these individuals (whether they have a disability
or not), as such individuals share their talents at home, school, and
work, and in recreation and leisure time.
No proposals, concept papers or other forms of applications should
be submitted at this time. Any such submission will be discarded.
ADD will not respond to individual comment letters. However, all
comments will be considered in preparing the final funding solicitation
announcement and will be acknowledged and addressed in that
announcement.
Please be reminded that, because of possible funding limitations,
the proposed priority areas listed below may not be published in a
final funding solicitation for this fiscal year.
Comments should be addressed to: Bob Williams, Commissioner,
Administration on Developmental Disabilities, Department of Health and
Human Services, Room 329-D HHH Building, 200 Independence Avenue, S.W.,
Washington, D.C. 20201.
Proposed Fiscal Year 1997 Priority Area 1: Managed Care and Disability
The delivery systems and financing through which health care is
provided to the nation's population have undergone monumental changes
over the past three decades. For the majority of its history, the
health care system in the United States has utilized a fee-for-service
model; services are provided and then the bill is paid based on what
was done (retrospective payment system). We are now moving toward a
prospective or prepayment based approach where a provider is paid a set
fee based on the number of patients to be served and services are
rendered only as needed. This system is synonymous with managed care
which promises to control costs and improve access to a coordinated
continuum of services. To the public and private sectors it presents a
solution to uncontrollable expenditures. For children and adults with
developmental disabilities and their families, the trend towards
managed care presents a mix of risks, challenges and opportunities.
If the managed care system of health delivery is to meet the
expectations of the public and private sectors and provide appropriate
quality acute health care and long-term services to people with
developmental disabilities and their families, a number of challenges
and fundamental questions must be addressed:
How can community long-term services and supports that are
consumer responsive and non-medical be integrated in acute health care
under a managed care plan?
How can managed care avoid imposing a medical model of care that is
inconsistent with extensive, inclusive, consumer responsive, community
long-term services and supports?
How will the core values of disability policy (non-
discrimination, inclusion/participation, consumer choice) be
incorporated into managed care if it is to provide quality, appropriate
acute and long-term services and supports?
How can States and others best ensure the meaningful
involvement of people with developmental disabilities and their
families throughout the process of designing and planning a managed
care system?
What are the elements of a managed care system that is
cost-effective, outcomes-oriented, and consumer-sensitive to the
segment of the population with developmental disabilities?
What is ``state-of-the-art managed care'' for this special
health care group?
How do we ensure the practices under managed care (i.e.,
gatekeepers, restrictive definitions of medical necessity, biased
utilization review criteria) when applied to individuals with
developmental disabilities who may need more, or different, health care
services to maintain their health and function effectively is non-
discriminatory?
To support our goal of independence, productivity, and integration,
ADD is interested in ideas to empower individuals with developmental
disabilities and their families to take a leadership role in their
States on managed care, welfare reform, and other emerging concerns.
This could be accomplished through a national center to provide
technical assistance in leadership development to enable the people
most affected to be effective players in their communities and States.
This center should be directed from a consumer perspective yet
represent a consortium of the developmental disabilities network,
independent living, self-advocates, parents, and organizations
representing minority communities. This consortium should be replicated
at the State level in a collaboration to develop and implement
strategies to foster/facilitate disability and parent leadership in
managed care, welfare reform, and other significant areas.
Leadership development requires not only skills but knowledge. This
center must acquire state-of-the-art general and technical information
and numerous aspects and issues that individuals with developmental
disabilities and parents of children with developmental disabilities
will need to participate in State-level activities and processes. It
will be necessary to have a resource pool of consultants that can be
utilized as needed.
PNS projects on leadership development and individuals of color
with developmental disabilities, cultural competency of the DD network,
and personal assistance service have developed training materials,
curricula, strategies, linkages, legislative proposals, policies, and
more. The center should build upon these projects.
This is one idea that ADD has concerning this topic but it is also
interested in any proposed priorities and approaches addressing this
area.
Proposed Fiscal Year 1997 Priority Area 2: Technical Assistance and
Knowledge Transfer on Welfare Reform and Individuals with Developmental
Disabilities and their Families
Over a million children and adults with disabilities and their
families will be directly affected by the implementation of all aspects
of the Personal Responsibility and Work Opportunity Reconciliation Act.
Such individuals and families should have an equal opportunity to
realize the full promise of Welfare Reform, including the chance to
work their way out of poverty, while keeping their families health,
safe and intact.
Significant research, best practices and lessons learned exist in
regard to assisting children and adults with the full range of
disabilities to live, work and become contributing members of their
families, communities and nation. States, communities, businesses,
disability constituencies and others can benefit from technical
assistance aimed at assisting them to transfer, adapt and apply such
knowledge and practice to Welfare Reform activities.
Such technical assistance should seek to better equip these major
stakeholders with the skills, knowledge and expertise
[[Page 18636]]
necessary to apply what is already known to work for persons with
developmental disabilities and their families to the Welfare Reform
context in respect to:
(1) Assuring the basic civil rights of, and equal opportunity for,
individuals with developmental disabilities and their families on the
Temporary Assistance for Needy Families (TANF) Program;
(2) Making work pay for low-income parents with developmental
disabilities and parents of children with developmental disabilities on
TANF;
(3) Encouraging job/business creation by and for low-income
families and individuals with developmental disabilities;
(4) Increasing the access and responsiveness of Head Start and
Child Care Programs to families of children with developmental
disabilities and parents with developmental disabilities;
(5) Supporting and strengthening poor families experiencing
developmental disabilities;
(6) Promoting the healthy and safe development of children with
developmental disabilities and their families;
(7) Making welfare reform work for teen parents and other at-risk
young people with developmental disabilities;
(8) Making tribal welfare reform work for Native Americans with
developmental disabilities and their families;
(9) Making welfare reform work for refugees and legal immigrants
with developmental disabilities and their families; and
(10) Enhancing child support enforcement.
ADD proposes to fund a national technical assistance and knowledge
transfer center on effective Welfare Reform for people with
developmental disabilities and their families. The mission of such a
center would be to work with States, the disability community,
businesses and others to enhance the likelihood that adults and
children with developmental disabilities as well as their families on
TANF would have an opportunity to benefit from all aspects of Welfare
Reform. Specifically, the center would work with all relevant
stakeholders to:
Track and report on trends and practices in welfare reform
affecting children and adults with developmental disabilities;
Convene working conferences to develop and share
strategies for responding to opportunities and risks in Welfare Reform
for such individuals and families;
Conduct, sponsor, assist in and disseminate relevant
research findings pertaining to: (i) the effects of Welfare Reform on
persons with developmental disabilities and their families; and, (ii)
relationships between disability, poverty, gender, ethnicity and
dependency on Aid to Families with Dependent Children (AFDC) and TANF;
Function as a clearinghouse on all relevant information,
emerging knowledge, policy, best practices and research;
Broker technical assistance, especially peer-to-peer
consultations, designed to assist such stakeholders to work together to
apply to Welfare Reform research and best practices regarding what
works for persons with developmental disabilities and their families;
Assist researchers conducting large-scale evaluations of
Welfare Reform to assure that such studies are designed and carried out
with sensitivity to a wide range of disability policy concerns;
Track, synthesize, disseminate, facilitate the adaptation
and/or replication of best or promising approaches, as well as lessons
learned, especially those supported by investments of ADD in DD
Councils, Protection and Advocacy Systems, University Affiliated
Programs, Projects of National Significance and other Federal or State
agencies or foundations;
Expand leadership development opportunities among
individuals and families experiencing developmental disabilities in
economically disadvantaged communities; and,
Sponsor forums, on-line conferences and other ongoing
exchanges to facilitate a greater understanding of the impacts of
Welfare Reform on individuals with developmental disabilities and their
families on the part of States, the disability community, foundations,
researchers and others.
Proposed Fiscal Year 1997 Priority Area 3: Technical Assistance and
Knowledge Transfer on Self-Determination and Responsible Leadership by
and for Individuals with Developmental Disabilities and Families of
Children with Developmental Disabilities
All Americans, including people with developmental and other
disabilities, should experience opportunities and a sense of community
and responsibility in their lives. In fact, one of the central tasks
facing us is to devise ways we as individuals, families, communities
and a nation can actively promote the responsibility people with
disabilities have for their own and our collective lives and futures.
Federal legislation such as the Developmental Disabilities Act, the
Individuals with Disabilities Education Act and the Americans with
Disabilities Act are all grounded in the fundamental principle that
persons with disabilities and their families have a critical need, and
as a matter of right ought, to be primary decision-makers in any
decision affecting their lives and futures.
The majority of the progress we have made as a society in this
regard in the past quarter century has shown us that responsible
leadership for and by people with developmental and other disabilities
and their families is a prerequisite to increasing independence,
productivity, integration and inclusion of such individuals and their
families. ADD and individual DD Councils, Protection and Advocacy
Systems and University Affiliated Programs have found that developing,
nurturing and sustaining strategic, creative and responsible leadership
on the part of individuals with developmental and other disabilities
and their families have been among the most high-yielding long-term
investments made.
Through Projects of National Significance, in particular, ADD has
assisted its grantees to develop and replicate a variety of innovative,
successful approaches to develop leadership and self-determination
among people with developmental disabilities and their families. Most
notably, this has taken the form of early and formative support of such
endeavors as Partners in Policy, the active participation of families
of children with developmental disabilities in designing and
implementing of State family support policies and programs, the Home of
Your Own initiative, personal assistance system change projects, and
targeted leadership efforts among people of color with developmental
disabilities.
Now more than ever, the States, the disability community and others
require support and assistance in strategically working through the
cumulative effects Welfare Reform, SSI changes, managed care and
Medicaid restructuring might have on adults and children with
developmental disabilities as well as their families. Responsible
leadership by people with developmental and other disabilities and
their families, is value driven and recognizes the new and emerging
realities facing State and local governments today. Such leadership is
critical to finding responsible and cost effective ways to strengthen
the abilities and opportunities of individuals with developmental
disabilities and families of children with developmental
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disabilities to exercise choice and self-determination throughout their
daily lives. This is true in respect to most people with developmental
disabilities and families of children with developmental disabilities,
but is particularly the case in regard to those living in poverty.
To address this set of challenges and opportunities, ADD proposes
to fund a national technical assistance and knowledge transfer center
on self-determination and 21st Century leadership development. The
mission of such a center would be to work with all relevant
stakeholders to expand and sustain responsible leadership by and for
people with developmental disabilities and families of children with
developmental disabilities in shaping and guiding the implementation of
policies, practices and approaches which enhance their own self-
determination and self-efficacy.
Specifically, the center would seek to strengthen and expand
leadership for the 21st Century by and for people with developmental
disabilities and families of children with developmental disabilities
through:
Building, expanding and strengthening what works in this
regard.
Brokering technical assistance, especially peer-to-peer
consultations, designed to assist such stakeholders to work together to
apply research and best practices to enhance the self-determination and
self-efficacy of persons with developmental disabilities and families
of children with developmental disabilities (especially in States and
communities that have not taken part in similar initiatives relating to
Partners in Policy, family support, home ownership, personal
assistance, self-determination, etc.).
Expanding self-determination opportunities and roles for
young people with and without developmental disabilities (ages 12-25)
as well as individuals with significant developmental disabilities and
families of children with developmental disabilities from economically
disadvantaged communities.
Convening working conferences to develop and share
strategies for enhancing self-determination in the context of the
changing roles of the State and Federal Governments, governmental
reinvention activities, a heightened focus on achieving results and
cost effectiveness, welfare reform, changes in SSI, managed care and
proposals for Medicaid restructuring.
Conducting, sponsoring, assisting in and disseminating
relevant research findings pertaining to the prospects for enhancing
self-determination and influencing policy in the changing Federal and
State context described above.
Functioning as a clearinghouse on all relevant
information, emerging knowledge, policy, best practices and research.
Tracking, synthesizing, disseminating, facilitating the
adaptation and/or replication of best or promising approaches, and
lessons learned, especially those supported by investments of ADD in DD
Councils, Protection and Advocacy Systems University Affiliated
Programs, Projects of National Significance and other Federal or State
agencies or foundations.
Sponsoring forums, on-line conferences and other ongoing
exchanges to facilitate a greater understanding of the impacts of
welfare reform on individuals with developmental disabilities and their
families on the part of States, the disability community, foundations,
researchers and others.
Proposed Fiscal Year 1997 Priority Area 4: The National Center for the
Analysis of Major Trends and Outcomes Data Regarding Individuals with
Developmental Disabilities and Their Families
ADD together with Developmental Disabilities Councils, Protection
and Advocacy Systems, University Affiliated Programs and Projects of
National Significance are responsible for helping to bring about the
increased independence, productivity, integration and inclusion of all
individuals with developmental disabilities in every aspect of American
life. In enacting Federal legislation such as the Developmental
Disabilities Act, the Individuals with Disabilities Education Act and
the Americans with Disabilities Act, the Congress also has found that
persons with disabilities and their families have a critical need and
as a matter of right should be primary decision-makers in any decision
affecting their lives and futures. ADD and its grantees, therefore,
have significant roles in strengthening the capabilities and expanding
the opportunities of individuals with developmental disabilities and
families of children with developmental disabilities to exercise choice
and self-determination throughout their daily lives. It is critical to
recognize that a variety of other broad governmental, economic and
social forces influence much more directly the achievement of these
vital national aims.
Accurately measuring, tracking and reporting on the extent to which
our society is progressing toward these goals is crucial to assessing
both the overall effectiveness of the ADD programs and that of the
Nation as a whole in carrying on this endeavor.
ADD has supported a number of initiatives particularly through PNS,
and ongoing projects designed to strengthen, expand and sustain our
collective understanding of the changing status of Americans with
developmental disabilities. This has taken the form of both the
formative and ongoing support for such endeavors as:
The three national data collection and dissemination
projects;
The development of the ADD Management Information System;
The Data Trends Conference cosponsored with NIDRR;
The AAUAP data collection project; and
The disability supplement to the National Health Interview
Survey.
To build on these and other efforts and to further foster the
pursuit of excellence through its leadership and that of its programs,
ADD proposes to fund a National Center for the Analysis of Major Trends
and Outcomes Data Regarding Individuals with Developmental Disabilities
and Their Families. The mission of such a center would be to work with
all relevant stakeholders around a number of tasks that could include
the following:
(1) Build and expand upon all current and past efforts undertaken
by ADD and all others in this area;
(2) Identify, synthesize, and report on major data sources on major
trends affecting the lives, well being and futures of all Americans,
including those with developmental and other disabilities as well as
their families;
(3) Identify, synthesize, and report on major data sources on major
trends specific to the lives, well-being and futures of individuals
with developmental disabilities and their prospects for their increased
independence, productivity, integration and inclusion and greater
choice and self-determination throughout their everyday lives;
(4) Develop, continually improve, and work with ADD, its programs
and all other relevant Federal, State and private entities to infuse
outcome measures and other indicators accurately reflecting the status
of persons with developmental disabilities and the families of children
with developmental disabilities into major surveys and studies;
(5) Develop in close consultation and collaboration with
individuals with developmental disabilities and families of children
with developmental disabilities a prototypical survey
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instrument to assess the extent to which such individuals and families
believe they have opportunities to exercise meaningful choice and self-
determination and to carry out personal responsibilities in life; and
(6) Develop a prototypical public opinion survey instrument which
can be reliably and cost effectively administered to a representative
national sample of the general public at least once every five years.
(Federal Catalog of Domestic Assistance Number 93.631--Developmental
Disabilities--Projects of National Significance)
Dated: April 10, 1997.
Bob Williams,
Commissioner, Administration on Developmental Disabilities.
[FR Doc. 97-9801 Filed 4-15-97; 8:45 am]
BILLING CODE 4184-01-M
