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

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URL: https://www.frixlaw.com/law-library/documents/fr%3A99-9862

## Record

- **Collection:** Federal Register
- **Document type:** Notice
- **Published:** April 20, 1999
- **Citation:** 64 FR 19369

## Text

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

[[Page 19371]]

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

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Source: Frix Law Library, https://www.frixlaw.com/law-library/documents/fr%3A99-9862. Public record. Not legal advice.