Developmental Disabilities: Request for Public Comments on Proposed Developmental Disabilities Funding Priorities for Projects of National Significance for Fiscal Year 1997

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

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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