[Federal Register Volume 64, Number 75 (Tuesday, April 20, 1999)]
[Notices]
[Pages 19369-19373]
From the Federal Register Online via the Government Publishing Office [www.gpo.gov]
[FR Doc No: 99-9862]


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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

[[Page 19370]]

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