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.

The Developmental Disabilities programs comprise three State-based programs that collaborate from different mandated activity areas. A fourth program addresses issues that are of concern to residents across the nation.

Developmental Disabilities Grant Programs

Four grant programs will receive $114.2 million in FY 1998. The same amount has been requested in FY 1999:

State Developmental Disabilities Councils

Formula grants support Councils in the States to promote capacity building and advocacy activities, the development of a consumer and family-centered comprehensive system, and a coordinated array of culturally competent services, supports, and other assistance designed to help people with developmental disabilities achieve independence, productivity, and integration and inclusion into the community. The Councils address employment issues, and may also address community living activities, child development activities, system coordination and community education activities, and other activities.

These state grants are allotted on the basis of population, financial need, and need for service. Fifty-five states and territories receive Council grants. For FY 1998, $64.8 million is available; the same amount has been proposed for FY 1999.

Protection and Advocacy (P&A) Program

The Protection and Advocacy (P&A) Program provides for the protection and advocacy of legal and human rights through formula grants to States. The P&A systems advocate on behalf of, and provide advocacy services to, persons with developmental disabilities in areas related to their disabilities, including: education, abuse and neglect, institutional and habilitation services, guardianship and housing issues. These systems have provided individual advocacy to about 40,000 clients per year, pursued class-action advocacy on behalf of hundreds of thousands per year, and also provided training and information and referral services to additional thousands.

These State grants are allotted on the basis of population, financial need, and need for service. Fifty-six States and territories receive P&A grants. For FY 1998, $26.7 million is available, and for FY 1999, the same amount has been proposed.

University Affiliated Programs (UAP)

UAP is a discretionary grant program for public and private, non-profit agencies affiliated with a university. Annual grants provide for interdisciplinary training, exemplary services, technical assistance, and information/dissemination activities.

The program is designed to garner additional assistance for a national network of UAPs. UAPs support activities which address individual needs from birth to old age, a variety of service issues from prevention to early intervention to supported employment, and a broad range of disabilities.

The UAP now consists of 61 programs which have provided clinical and community-based service and technical assistance to community services personnel. In addition, 61 UAPs receive supplemental training grants for early intervention, community-based programs, and other activities.

For FY 1998, $17.5 million is available in grants for operational and administrative support as part of a national network. For FY 1999, the same amount has been requested.

Projects of National Significance (PNS)

PNS funds are awarded to public or private, non-profit institutions to enhance the independence, productivity, integration and inclusion into the community of people with developmental disabilities. Monies also support the development of national and state policy.

These Projects focus on the most pressing issues affecting people with developmental disabilities and their families. Issues transcend the borders of states and territories, but must be addressed in a manner which allows for local implementation of practical solutions. Examples include:

• Data collection and analysis;
  
  
• Technical assistance to program components;
  
  
• Projects which explore the transition of youth with developmental disabilities from school to work;
  
  
• Projects which enhance participation of people with developmental disabilities from minority and ethnic groups;
  
  
• Projects which develop strategies for self-advocacy and leadership skills among people with developmental disabilities and their families;
  
  
• Projects which develop training and ongoing programs for inclusion of children with developmental disabilities in child care settings;