[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

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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