Developmental Disabilities: Request for Public Comments on Proposed Developmental Disabilities Funding Priorities for Projects of National Significance for Fiscal Year 1999

DEPARTMENT OF HEALTH AND HUMAN SERVICES

Administration for Children and Families

[Program Announcement No. 93631-99-02]

Developmental Disabilities: Request for Public Comments on

Proposed Developmental Disabilities Funding Priorities for Projects of

National Significance for Fiscal Year 1999

AGENCY: Administration on Developmental Disabilities (ADD), ACF, DHHS.

ACTION: Notice of request for public comments on developmental

disabilities tentative funding priorities for Projects of National

Significance for Fiscal Year 1999.

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SUMMARY: The Administration on Developmental Disabilities (ADD)

announced that public comments are being requested on tentative funding

priorities for Fiscal Year 1999 Projects of National Significance prior

to being announced in its final form.

We welcome comments and suggestions on this proposed announcement

and funding priorities that 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 applications is June 21,

1999.

ADDRESSES: Comments should be sent to: Sue Swenson, Commissioner,

Administration on Developmental Disabilities, Administration for

Children and Families, Department of Health and Human Services, 370

L'Enfant Promenade, S.W., Room 300F, Washington, D.C., 20447.

FOR FURTHER INFORMATION CONTACT: Administration for Children and

Families (ACF), Pat Laird, 370 L'Enfant Promenade, S.W., Room 300F,

Washington, D.C., 20447, 202/690-7447.

SUPPLEMENTARY INFORMATION: This announcement consists of two parts:

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

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

that promote the self-sufficiency and protect the rights of individuals

with developmental disabilities.

The 1996 Amendments (Public Law 104-183) to the Developmental

Disabilities Assistance and Bill of Rights Act (42 U.S.C.6000 et seq.)

(the Act) supports and provides assistance to States and public and

private nonprofit agencies and organizations to assure that individuals

with developmental disabilities and their families participate in the

design of 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

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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 as a part of 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, to engage in leadership activities in their

communities, as well as to ensure the protection of their legal and

human rights.

Programs funded under the Act are:

Federal assistance to State developmental disabilities

councils;

State system for the protection and advocacy of

individual's rights;

Grants to university affiliated programs for

interdisciplinary training, exemplary services, technical assistance,

and information dissemination; and

Grants for Projects of National Significance.

C. Description of Projects of National Significance

Under Part E of the Act, demonstration grants and contracts are

awarded for projects of national significance that support the

development of national and State policy to enhance the independence,

productivity, and integration and inclusion of individuals with

developmental disabilities through:

Data collection and analysis;

Technical assistance to enhance the quality of State

developmental 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 the development of information and referral

systems;

--Educating policy makers;

--Federal interagency initiatives;

--The enhancement of 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.

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 period of 60

days for public comment concerning such proposed priorities. After

analyzing and considering such comments, ADD must publish in the

Federal Register final priorities for such grants and contracts, and

solicit applications for funding based on the final priorities

selected.

The following section presents the proposed priority areas for

Fiscal Year 1999 Projects of National Significance. We welcome specific

comments and suggestions. We would also like to receive suggestions on

topics which are timely and relate to specific needs in the

developmental 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., as well

as the availability of funds for this fiscal year.

Part II

Fiscal Year 1999 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 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 people with developmental disabilities and

people without disabilities; and which recognize the contributions of

these people (whether they have a disability or not), who 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: Sue Swenson, Commissioner,

Administration on Developmental Disabilities, Administration for

Children and Families, Department of Health and Human Services, 370

L'Enfant Promenade, S.W., Room 300F, Washington, D.C. 20447.

Proposed Fiscal Year 1999 Priority Area 1: Ongoing Data Collection and

Information Dissemination

The purpose of this priority area is to fund projects through a

cooperative agreement to collect data on public expenditures,

employment and economic status, residential services, and other factors

as they impact on the independence, productivity, integration and

inclusion into the community of persons with developmental

disabilities. ADD is particularly interested in the maximum use of

already existing databases and in fostering the broadest dissemination

to and use of the data by consumers, families and advocacy audiences.

Recently both public and private organizations have focused on data

regarding people with disabilities. In 1998 the National Organization

on Disability sponsored a Louis Harris survey on employment of adults

with disabilities in the United States to determine whether their

quality of life had improved since the passage of the Americans with

Disabilities Act (ADA). In 1994 and 1995 a Disability Supplement was

included in the National Health Interview Survey (NHIS). The NHIS is a

household survey that has been conducted by the U.S. Bureau of the

Census annually since 1957 and is supported by the National Center for

Health Statistics. The NHIS focuses on the civilian, non-

institutionalized population in the United States. Each year the NHIS

randomly samples approximately 46,000 households with 116,000 members.

The Disability Supplement

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was included in this survey to identify a range of items necessary for

gathering baseline data on disability, including developmental

disabilities in this country. Other organizations are attempting to

develop usable data on particular aspects of the lives of people with

disabilities as well as include disability as a demographic factor in

general surveys.

In December 1998 the ADD hosted a roundtable on data. This was a

two-day discussion by representatives from Federal agencies, non-profit

organizations, and universities involved with generating and

synthesizing data about people with developmental and other

disabilities. This roundtable addressed programmatic issues such as

waiting lists, aging and disability, and employment as well as concrete

data and information issues. Data issues included the quality of data

states maintain, the focus of information collected on people in

institutions and group homes, and who is and should be included in the

developmental disabilities population.

ADD has funded successful projects on data and information,

including:

University of Minnesota: National Recurring Data Set

Project on Residential Services--Ongoing National and State-by-State

Data Collection and Policy/Impact Analysis on Residential Services for

Persons with Developmental Disabilities (Charles Lakin: 612/624-5005)

University of Illinois at Chicago: Sixth National Study of

Public Mental Retardation/Developmental Disabilities Spending (David

Braddock: 312/413-1647)

Boston Children's Hospital: Access to Integrated

Employment: National Data Collection on Day and Employment Services for

Citizens with Developmental Disabilities (William Kiernan: 617/355-

6506)

Prevalent throughout the Roundtable discussion was the expanding

role of states in the delivery of human services and the differences in

what human services they deliver and the substance and extent of such

services. For this reason ADD is interested in funding a special study

as a part of the public expenditure project. This study would focus on

state funding of human services programs for people with disabilities

and, in particular, people with developmental disabilities.

ADD anticipates that this additional study will be a 12-month

comprehensive investigation and analysis of expenditures at the state

level on supports and services for people who have disabilities and,

within this population, people who have developmental disabilities.

Such an analysis could be a nation-wide comparison of states or involve

a selection of states. The study would not involve income maintenance

programs, but would include state expenditures for supports and

services relating to housing, medical care, employment or vocational

training, transportation, education, including efforts to enhance

inclusive education, and personal assistance and other supports for

independent living.

ADD's interest in such a study is also based on the devolution of

the authorities for human services programs to state governments. The

study should demonstrate how states are using their resources to

provide supports and services for all people with disabilities and

specifically for people with developmental disabilities.

Possible areas of focus for the special study include:

Describing how services, supports, and assistance

available at the state-level ensure accessibility, provide reasonable

accommodations and in other ways create community environments to

ensure the success of the ADA.

Comparing states (or selected states) regarding types and

comprehensiveness of services and supports.

Listing services available in some states for replication

by other states.

The Roundtable discussion reinforced the significant role the

states play in the delivery of human services especially since welfare

reform. With its passage has come an increased attention to the

employment status of people with disabilities. There is much that still

needs to be known about the employment issues impacting on individuals

with developmental disabilities. As part of the data project on

employment, ADD is proposing information collection and analysis by

state on these issues including services and follow-up from state

vocational rehabilitation agencies, subsequent long-term employment,

and impediments to long-term employment. The use of existing databases

funded or maintained by U.S. Department of Education and Labor and

others should be utilized in this effort.

The data collection projects on public expenditures, employment,

and residential services, should consider including activities which

would:

Identify, collect and disseminate new databases.

Modify, expand and/or reformulate existing databases.

Project and model the cost-benefit impact of alternative

future decisions based on the analysis of discrete programmatic options

in the areas of residential services and employment.

Connect, integrate or analyze available databases.

ADD is considering the addition of a data collection project to

measure and track the participation of children with developmental

disabilities in general education curricula and settings, and spending

associated with such inclusion. The project would use existing state

and local databases to analyze the relationships between student and

family outcomes, program designs and fiscal commitments. Such a project

would be intended to help legislatures, advocates, states, local school

districts, and school boards understand relationships between program

designs and costs so that they can identify the most cost-effective

models of program design and delivery of IDEA-funded and locally-funded

supports. The goal would be to provide reliable and useful information

to support the full inclusion of children with developmental

disabilities in American public schools.

Proposed Fiscal Year 1999 Priority Area 2: Breaking Through the Glass

Ceiling to Attain First Class Citizenship

``The right to enjoying the privileges of membership or citizenship

touches all parts of the American Dream and the equality of opportunity

envisioned by our founders. The importance of these dreams continues

for today's multicultural society: having a home, family and friends;

going to school; being a part of the community; and, critically, having

a job.'' (Presidential Task Force on the Employment of Adults with

Disabilities, Re-charting the Course, November 1998)

The May 1998 publication of the ``Disability Statistics Abstract''

reports that the 1994 Harris poll of Americans with Disabilities

indicated that 63 per cent of respondents said their quality of life

had improved during the previous four years. However, trend data show

only slow improvements in the lives of people with disabilities as

measured by such things as more opportunities for employment and

improved economic status, greater freedom of movement and ease of

access, and increased levels of social integration.

In the release of its 1998 progress report on the status of

disability policy, the National Council on Disability stated that ``The

country continues to move forward, however the rate of progress is

slower and less steady than many in the disability community had hoped

when the Americans with Disabilities Act (ADA) was enacted in 1990.

Federal policy remains rife with

[[Page 19372]]

inconsistent messages and unrealistic requirements for people with

disabilities who rely on federal programs like Social Security

disability benefits, vocational rehabilitation, Medicaid, Medicare,

special education, and Temporary Assistance for Needy Families (TANF).

In addition, the backlash against civil rights for children and adults

with disabilities continues to motivate attempts to weaken laws such as

the Individuals with Disabilities Education Act (IDEA) and ADA.''

Through Projects of National Significance, in particular, ADD has

assisted its grantees in developing and replicating a variety of

innovative and successful approaches to increased leadership

development and self-determination among people with significant

disabilities and their families. Most notably, this has taken the form

of early and formative support of such endeavors as Partners in

Policymaking, the active participation of families of children with

disabilities in the design and implementation 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 who have developmental disabilities.

ADD's programs are State-based, and so are systems that serve

Americans with developmental disabilities. In fact, data measuring the

delivery of services and supports to people with developmental

disabilities and their families show little comparability from State to

State. To respond to State flexibility, devolution, and States' ongoing

needs for input from stakeholders, DD network programs in most States

provide some form of training or leadership development to people with

developmental disabilities and their families. Many people have been

trained to interact effectively on their own behalf with State systems

designed to serve them, and with State policymakers.

However, some issues, problems, programs and systems are inherently

national (such as civil rights) or are national in scope (such as the

design of federal systems including entitlements). ADD believes that

devolution will increase, not decrease the demand for national

stakeholders. In order to address the growing need for advocates who

have the skills and experience to function in national arenas, ADD

proposes to deliver skills-based training to people who have

distinguished themselves as graduates of State-based training programs.

Although ADD recognizes that many State leaders have developed

tremendous skills on their own over the years, we are particularly

interested in providing further training to people who have become

experienced, thoughtful, and responsible advocates as a result of

State-based training programs.

To address this set of challenges and opportunities, ADD proposes

to fund a national policy training academy. The purpose of such an

academy would be to provide opportunities for experienced state leaders

who are adults with developmental disabilities and families of children

with developmental disabilities gain the necessary knowledge and skills

to shape and guide the implementation of policies, practices and

approaches which enhance their own self determination.

Specifically, the Academy would seek to strengthen and expand

national leadership for the 21st Century by and for people with

developmental disabilities and families of children with disabilities

through:

Building a network of individual and family leaders in

disability.

Developing systemic strategies for identifying and

involving grassroots disability leaders.

Disseminating best practices, curricula, guides, and

informational materials on self-determination and leadership

development.

Providing experiential learning opportunities that will

enable individuals to acquire and deepen their knowledge and skills in

the areas of: the operations of the legislative and executive branches;

the programs and processes of significant federal agencies; the

capacity of computer technology; the resources of national advocacy

organizations; grant writing and reviewing; and the development of non-

profit organizations.

It is envisioned that the main activities of the Academy will occur

in Washington, DC over segments of time to gain the most benefit from

national resources. Therefore, ADD is interested in knowing whether DD

Councils, UAPs, P&As or other agencies would be willing to provide

travel stipends to support participation of local people in this

Academy.

Proposed Fiscal Year 1999 Priority Area 3: Reinventing Quality:

Ensuring and Enhancing That Community Living Settings and Services Are

Responsive to People With Developmental Disabilities

In 1993, the Federal government presented its response to

improving how it does business--The National Performance Review, the

Federal government's ``reinvention'' project. When the Review asked

Americans what they expect from government services this is what they

heard:

``Ask us what we want.''

``Don't tell us, `That's not my department.' ''

``Treat us with courtesy, respect, and enthusiasm.''

``Make it easy.''

``Provide reliable, timely help.''

This is the same thing that Americans with disabilities and their

families expect from all levels of government. According to a

publication issued by the American Association on Mental Retardation

(AAMR), ``Shaping Our Destiny--A Provider's Guide to Quality Community

Services'', people with developmental disabilities and their families

``should have an equal right to quality services and supports--

including clear, relevant service standards, and reliable, timely

help.'' This guide further states that, ``Merely delivering services in

the community doesn't make them quality services. Community services

are quality services when they are flexible, reliable, and complete

enough to meet an individual's needs.'' The guide explains that the old

system of service delivery is not based on individually-designed

services; that new service standards must be developed that ensure that

everybody understands how community services and supports are supposed

to work and that the new standards focus on results or outcomes that

are meaningful to the people who use the supports. Most importantly,

the guide emphasizes that these new service standards do not come from

the Federal government, but are the products of each organization's

interactions with its customers. Contained in the guide are examples of

quality projects and ways to interact with stakeholders by service

providers.

The ``quality revolution'' described in the AAMR publication

reflects a trend in the States toward outcome-focused quality assurance

systems in residential services for individuals with developmental

disabilities. The status of the States' activities toward implementing

an outcome-based approach was the subject of a 1996 report ``Compendium

of State Outcome-Focused Quality Assurance Systems'' by the Human

Services Research Institute (HSRI). It found that there was a general

sense in the States ``that traditional quality assurance, in particular

comprehensive licensure and certification surveys, focuses too heavily

on environment and process and not enough on outcomes for the

individual (consumer) or on `quality of life' issues. Across the States

there appears to be a relationship between the evolution of

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the State's mental retardation/developmental disabilities service

system and the degree of quality assurance reform toward an outcome-

focused system.''

``Reinventing Quality--The 1998 Sourcebook of Innovative Programs

for the Quality Assurance and Quality Improvement of Community

Services'', Institute on Community Integration/University of Minnesota,

reaffirms this trend in the States as reported by HSRI and reasserts

the need to change the service standards to reflect the evolution to

community-based, individual needs. In the background section of this

book, it states ``Recent years have seen a shift in long-term care for

persons with developmental disabilities from large institutions to

community settings. But people receiving community services can fully

realize the potential for improved quality of life afforded by this

movement only if quality assurance expectations and activities are

changed significantly from those originally developed for institutional

care.'' Efforts to improve the quality of community services have

demonstrated many innovative and comprehensive quality assessment and

enhancement practices that are contained in the Sourcebook. It is these

efforts that ``may help others to fashion their own responses that not

only protect the basic safety and well-being of individuals, but also

encourage and support their preferred choices, personal growth, and

individual lifestyles.'' One set of efforts described is consumer and

family monitoring initiatives. Eight programs are profiled outlining

their attempts at gaining insight into the quality of life of residents

at group homes and other smaller facilities and providing feedback for

quality enhancement.

It is obvious that ``monitoring'' in the traditional sense of the

word is no longer an acceptable method for determining the quality of

services and supports to people with developmental disabilities and

their families. Thus, ADD is very interested in supporting models that

demonstrate the effectiveness and cost efficiency of using volunteer

surveyors of community residencies to gather objective information on

the quality of life or outcomes experienced by their residents. The

purpose of these projects would be to assist in the development of

quality assurance improvements in their states. Projects should

consider how their activities could contribute to an integrated service

system based on person-centered outcomes. Any tools or instruments of

measurement used should have as their focus the needs of the

individual. These tools or instruments should be tested for reliability

or validity and be standardized. Also, any tools/instruments should

offer interpretive guidelines for those expected to use them. These

projects would be expected to include in their community surveying

multiple community settings (rural and urban), different types of

housing (group homes, supported living, ownership) and all ranges of

disability from mild to severe, especially those with limited

communication skills. Projects should address cultural and geographic

issues in their surveying as well. Consideration should be given to any

issues regarding liability and insurance that may effect the

implementation of the project. Models that ADD would seriously consider

for funding should incorporate recruitment of consumers and family

members and advocates, training of prospective surveyors, and direct

observation and contact of residents.

(Federal Catalog of Domestic Assistance Number 93.631--Developmental

Disabilities--Projects of National Significance)

Dated: April 14, 1999.

Sue Swenson,

Commissioner, Administration on Developmental Disabilities.

[FR Doc. 99-9862 Filed 4-19-99; 8:45 am]

BILLING CODE 4184-01-P