To amend the Developmental Disabilities Assistance and Bill of Rights Act to extend authorizations of appropriations through FY 2004, to amend the formulas for allotments of funds to States and Protection and Advocacy Systems, and for other purposes.

Be it enacted by the Senate and House of Representatives of the United States of America in Congress assembled, That this Act may be cited as the Developmental Disabilities Assistance Amendments of 1999".

Description of Reauthorization

Enclosed for the consideration of the Congress is the Administrations draft bill entitled the "Developmental Disabilities Assistance Amendments of 1999." The bill amends programs for individuals with developmental disabilities (DD) under the Developmental Disabilities Assistance and Bill of Rights Act (the Act), and extends authorizations for these programs through FY 2004. The bill provides authorizations of appropriations of approximately $120 million for FY 2000. Of this amount, $64,803,000 will support State DD Councils, $26,718,000 will fund State Protection and Advocacy systems (P&As); $17,461,000 will go to University Affiliated Programs (UAPs); and $10,250,000 will fund Projects of National Significance (PNS), with such sums as necessary authorized for FYs 2001-2004.

The bill replaces the current set of four Federal priority area activities (relating to community living, employment, child development, and system coordination and community education) with six life goal activities that comply with existing Government Performance and Results Act (GPRA) reporting requirements. These life goal activities include education, employment, health, housing, community support, and self-determination. The outcome measures were developed in collaboration with consumer and program representatives, and will promote independence, productivity, and integration and inclusion in the community of individuals with DD.

The bill substantially revises the formula for allotting appropriations among State DD Councils and P&As. Current law requires the formula to take into account "the extent of need for services for persons with DD." This requirement has proven difficult to administer. The only data available on numbers and location of persons with DD are incomplete and ill-suited to the DD Act's purposes. The best available data (on numbers of children receiving supplemental security income (SSI)) are ill-suited for distribution of DD funding for a number of reasons: the data are unavailable for the territories; changes in the SSI eligibility standards or definition of disability can affect DD Act funding distribution in unpredictable ways; and use of means-tested SSI numbers effectively disregards persons above SSI eligibility levels (and may even penalize States that have been most effective in placing individuals with DD in employment).

Using SSI data as a factor in determining allocations results in unpredictable, arbitrary and inequitable differences in funding levels among States.

The revised allotment formula is based on general population instead of using imperfect data (e.g., SSI) as a proxy for individuals with DD. It further simplifies application of the formula by replacing the minimum allotment guarantee for small States with an equivalent base allotment for all States. The formula includes a hold-harmless provision that phases out after FY 2002. Beginning in FY 2003, a new incentive allotment, from the final 5 percent of funds available, would be awarded to States that achieve benchmarks established by the Secretary in regulations with respect to outcomes related to life goal activities under their plans.

The bill also amends part D of the Act (UAPs) in its entirety, by consolidating into a single UAP grant what are currently separate amounts for the basic grant and for training initiative projects. Other amendments incorporate the life goal activities, to foster collaborative efforts with other DD Act programs and responsiveness to GPRA requirements. These amendments make program organization, purposes, and requirements easier to understand and eliminate redundant and obsolete provisions.

Finally, the bill amends part E of the Act (PNS) to provide authority for the Secretary to enter into interagency agreements with other Federal agencies to carry out PNS activities or activities of common interest related to the purposes of part E. For such purposes the Secretary is authorized to transfer funds appropriated under this part to such other agencies, and to receive and use funds from such agencies. This authority, modeled on current authority of the Department of Education (DoED), will substantially enhance HHS's ability to collaborate with other Federal agencies, including DoED, on joint initiatives.

Developmental Disabilities Programs

There are nearly four million Americans with developmental disabilities. Developmental disabilities are severe, chronic disabilities attributable to mental and/or physical impairment which manifest before age 22 and are likely to continue indefinitely. They result in substantial limitations in three or more areas: self-care, receptive and expressive language, learning, mobility, self-direction, capacity for independent living, and economic self-sufficiency, as well as the continuous need for individually planned and coordinated services.

The major goal of the programs is a partnership with state governments, local communities, and the private sector to assist people with developmental disabilities to reach maximum potential through increased independence, productivity, and community integration. They address all elements of the life cycle: prevention; diagnosis; early intervention; therapy; education; training;employment; and community living and leisure opportunities.

Program Specific Information

Developmental Disabilities Councils Program

Under Part B of the Act, the Developmental Disabilities Council program provides financial assistance to each State to support the activities of a Developmental Disabilities Council in that State. Councils are uniquely composed of individuals with significant disabilities, parents and family members of people with developmental disabilities, and representatives of State agencies that provide services to individuals with developmental disabilities. Together, this group of individuals develops and implements a statewide plan to address the Federally-mandated priority of employment, and optionally any of three other Federal priorities (case management, child development, and community living) as well as one optional State priority.

The emphasis of the Councils is to increase the independence, productivity, inclusion and integration into the community of people with developmental disabilities, through a variety of systemic change, capacity building, and advocacy activities on their behalf, including development of a State Plan, which lays out activities for demonstration of new approaches to enhance their lives; training activities; supporting communities to respond positively; educating the public about their abilities, preferences, and needs; providing information to policy-makers to increase their opportunities; and eliminating barriers.

Fiscal Year 1999 appropriations provided $64,803,000 to support these activities.

This program is authorized under Part B of the Act.

Information on the following can be found at:



    2102 Weatherton Dr.
    Wilmington, DE 19810
    Phone: (302) 529-7270
    FAX: (302) 529-7271
    Web Page:
    Executive Director: Phyllis Guinivan, Ph.D.
    Office of Governmental Relations
    9305 Forest Haven Drive
    Alexandria, VA 23309
    Phone: (703) 780-8285
    FAX: (703) 780-0223
    Executive Director:Ed Burke
    1234 Massachusetts Ave. N.W.Suite 103
    Washington, D.C. 20005
    Phone: (202) 347-1234
    FAX: (202) 347-4023
    Web Page:
    Executive Director:Susan A. Zierman

Protection and Advocacy Program for People with Developmental Disabilities (PADD)

The Developmental Disabilities Assistance and Bill of Rights Act provides for each State to establish a Protection and Advocacy (P&A) System to empower, protect, and advocate on behalf of persons with developmental disabilities. This system must be independent of service-providing agencies. The P&As are authorized to provide information and referral services and to exercise legal, administrative and other remedies to resolve problems for individuals and groups of clients. The P&As are also required to reach out to members of minority groups that historically have been underserved. In addition to the PADD program, which serves people with developmental disabilities, the P&A also includes components mandated by several other Federal programs to serve people with disabilities and mental illness.

The PADD program in each State has a significant role in enhancing the quality of life of persons with developmental disabilities in every community. The PADD is mandated to:

The P&A systems are required to provide an annual opportunity for the public to comment on the objectives, priorities, and activities of the system. This gives clients and others in the community an opportunity to voice their concerns and needs to the P&A. In order to safeguard the rights of clients and prospective clients, each P&A is also required to establish a grievance procedure for any problems which may be experienced.

Fiscal Year 1999 appropriations provided $26,718,000 to support these activities.

This program is authorized under Part C of the Act.

UniversityAffiliated Programs for People with Developmental Disabilities Administration on Developmental Disabilities

The University Affiliated Programs is a discretionary grant program providing for operational and administrative support to University Affiliated Programs in the States as part of a national network to support interdisciplinary training, exemplary services, technical assistance, and information/dissemination activities.

The mission of University Affiliated Programs (UAPs) is to serve as liaisons between academic expertise and institutions of higher learning and service delivery systems so as to positively affect the lives of individuals with developmental disabilities and their families by increasing their independence, productivity, and integration into communities.

The UAPs have evolved considerably during their history since 1963. Fifield and Fifield, in their 1995 historical survey of UAPs, consider their evolution to have occurred within three periods. The first period (1963-1974) emphasized the construction of institutions, closely associated with Universities, and predominantly serving persons with mental retardation, at which clinical services, diagnosis and treatment, and the training of personnel and centralized expertise were provided. The second period (1975-1986) emphasized community-based service, developmental concepts, providing services through a person's full life span, and emerging environmental concerns. This period included the expansion of the definition of developmental disabilities to include autism and learning disabilities. It also saw the creation of the three major components of the present developmental disabilities system: State Developmental Disabilities Planning Councils, Protection and Advocacy Agencies, and University Affiliated Facilities (renamed as University Affiliated Programs (UAPs)). The third period (1987 to present) has emphasized a consumer focus, as exemplified by the completion of an extensive national consumer satisfaction evaluation study ("The 1990 Report"), and brought the issues of consumer empowerment, independence and inclusion into major focus.

Currently, UAPs engage in four broad tasks: conducting interdisciplinary training, promoting exemplary community service programs, providing technical assistance at all levels from local service delivery to community and state governments, and conducting research and dissemination activities. UAPs provide community training and technical assistance to family and individual support service organizations, working with individuals with developmental disabilities, family members of these individuals, professionals, paraprofessionals, students, and volunteers. Direct exemplary service programs and the provision of training and technical assistance may include activities in the areas of family support, individual support, personal assistance services, clinical services, prevention services, health, education, vocational and other direct services. The UAPs continue to contribute to the development of new knowledge through research, development and field testing of models, and the evaluation of existing as well as innovative practices.

Over the past decade, the network of UAPs has increased from 40 at the time of the 1987 reauthorization to its present total of 61, with 60 additional training initiative projects in the areas of early intervention, community services, positive behavioral supports, assistive technology, community transition, the Americans with Disabilities Act, aging, and special concerns. Fiscal year 1995 marked the completion of the legislative mandate that every State and Territory be served by at least one university affiliated program, and saw the addition of the Guam UAP. This expansion and development of new programs is concurrent with an increased impetus for excellence, accountability and involvement of consumers and consumer organizations.

Fiscal Year 1999 appropriations provided $17,461,000 to support these activities.

This program is authorized under Part D of the Act.

Projects of National Significance (PNS) Administration on Developmental Disabilities

Under Projects of National Significance (PNS), the Administration on Developmental Disabilities awards grants and contracts to:

These Projects focus on the most pressing issues affecting people with developmental disabilities and their families. Project issues transcend the borders of States and territories, while project designs are oriented to permit local implementation of practical solutions. Examples include:

This program is authorized under Part E of the Act.