2003–2004 Bi-Annual Report to Congress

A Message from Commissioner Patricia A. Morrissey

Administration on Developmental Disabilities

The American dream belongs to everyone. This belief provides a foundation for the work that the Administration on Developmental Disabilities (ADD) and its many grantees (180 plus) do on behalf of individuals with developmental disabilities and their families.

There are approximately 4.5 million individuals with developmental disabilities in the United States. Developmental disabilities are severe, life-long disabilities attributable to mental and/or physical impairments, manifested before age 22. Developmental disabilities result in substantial limitations in three or more areas of major life activities:

• capacity for independent living
• economic self-sufficiency
• learning
• mobility
• receptive and expressive language
• self-care
• self-direction

Fortunately, we have strong Federal policies and Executive Branch leadership to help these individuals and families realize their dreams to live and thrive in communities across America.

ADD carries out its mandate through the direction given to us in the Developmental Disabilities Assistance and Bill of Rights Act of 2000 (P.L. 106–402). The law states:

The purpose of this title (Title I, P.L. 106–402) is to assure that individuals with developmental disabilities and their families participate in the design of and have access to needed community services, individualized supports, and other forms of assistance that promote self-determination, independence, productivity, and integration and inclusion in all facets of community life, through culturally competent programs authorized under this title…

The rationale for this legislation and many other Federal laws is that historically, individuals with disabilities have often been isolated and segregated from the mainstream of society. Individuals with developmental disabilities still experience discrimination in critical areas such as employment, housing, public accommodations, education, transportation, communication, recreation, institutionalization, health services, voting, and access to public services. Discrimination is experienced in various forms, including the failure to make modifications to existing facilities, policies, and practices. Individuals with developmental disabilities are frequently offered lesser services, programs, activities, benefits, jobs, or other opportunities.

Through the DD Act and other laws such as the Americans with Disabilities Act, the Social Security Act, the Rehabilitation Act, and the Individuals with Disabilities Education Act, each of which addresses one or more of the forms of discrimination faced by individuals with disabilities, ADD’s grantees are empowered to:

• Help individuals with developmental disabilities and their families to become effective advocates for themselves;
• Build the capacity among service providers and other professionals to treat individuals with developmental disabilities in an appropriate and respectful way; and
• Bring about changes in human service systems and communities so that individuals with developmental disabilities and their families have more choices and control over services and supports.

ADD and its grantees are also empowered by two new initiatives of President George W. Bush related to individuals with disabilities. First, President Bush launched the New Freedom Initiative on February 1, 2001. The purpose of the New Freedom Initiative is to fully integrate Americans with disabilities into the mainstream population, allowing them full access to voting, employment, education, home ownership, community activities, transportation, and many other aspects of life and liberty that all Americans should enjoy. Through Federal Government actions and public-private partnerships, three broad goals are being addressed. Those goals are to:

1. Increase access to assistive and universally designed technologies;
2. Expand educational opportunities for Americans with disabilities; and
3. Promote full access to community life.

Second, on June 18, 2001, the President signed the Executive Order on Olmstead (Olmstead v. L.C., 527 US 581 (1999)), Executive Order 13127, in which he directed Federal agencies to address the decision in the Olmstead case. In that decision, the Supreme Court determined that the Americans with Disabilities Act required states to place qualified individuals with mental disabilities in community settings rather than institutions whenever treatment professionals determine that such placement is appropriate, the affected persons do not oppose such placement, and the state can reasonably accommodate the placement, taking into account the resources available to the state and the needs of others with disabilities. In the Executive Order, the President directed the Federal Government to assist states and localities to implement the Olmstead decision quickly, so as to ensure that all Americans have the opportunity to reside near their families and friends, live more independently, engage in productive employment, and participate in daily community life.

Finally, ADD and its grantees are empowered by Secretary Michael Leavitt’s goals for the Department of Health and Human Services to:

• Transform the health care system by eliminating inequalities;
• Modernize Medicare and Medicaid so that individuals with disabilities will be cared for in their home and community; and
• Protect life, family, and human dignity by advocating that individuals with disabilities be cared for with dignity and respect by the health care system and by rewarding self-reliance and work.

ADD’s grantees help individuals with developmental disabilities and their families in many different ways. The DD Act directs them to assist individuals with developmental disabilities through activities in one or more areas, including: quality assurance, education and early intervention, child care, health, employment, housing, transportation, recreation, and other services available or offered to individuals in a community, including formal and informal community supports, that affect their quality of life. In addition, what ADD’s grantees do with the funds they receive from ADD is influenced by the suggestions and advice they receive from individuals with developmental disabilities and their families. The DD Act requires grantees to collect and consider their suggestions and advice.

By listening to and caring about individuals with developmental disabilities, by having a strong, but flexible law behind them, and by sharing a common mission with the President and Secretary Leavitt, ADD’s grantees play a central role in bringing the American dream to individuals with developmental disabilities and their families.

This report tells stories about ADD’s grantees and how they have changed lives—through technology, new jobs, new opportunities, empowerment training, and protection of rights. Here are some highlights.

• As the result of grantees’ efforts, individuals with developmental disabilities are more independent and self-sufficient. In Minnesota, individuals with developmental disabilities have been taught document scanning and now have white collar jobs in technical and medical environments. In rural Arkansas, a mobile van allows individuals with developmental disabilities to have access to dental services for the first time. In Mississippi, a Smart Car has been developed that allows individuals with developmental disabilities to drive. In Georgia, an ongoing study is tracking the experiences of individuals with developmental disabilities who recently moved from institutional placements to homes in the community, thereby enabling state officials to ease future transitions.
• As a result of grantees’ efforts, children with developmental disabilities are integrated through inclusive education, early intervention, and child care. New Mexico and Indiana train child care providers to work with children with developmental disabilities. Connecticut offers training for parents and professionals. New York provides early intervention services that allow for access to appropriate resources and services. Montana and Massachusetts support programs that teach students with developmental disabilities social and career skills in order to ease the transition from school to work. Other grantees are promoting inclusion of children with developmental disabilities at all stages of education.
• Through grantees’ efforts, individuals with developmental disabilities have better quality services and support. Ohio has a “report card system” that allows people with developmental disabilities to “grade” care providers. California provides activities and community involvement opportunities to seniors with developmental disabilities.
• Through the work of grantees, individuals with developmental disabilities are trained and active in self-advocacy. Now, in every state, after many years of having little voice in laws and services that are important to them, individuals with developmental disabilities are creating change. Some initiatives that are helping to facilitate this change include self-advocacy and system advocacy training in Alaska and Tennessee, outreach in Hispanic communities in Illinois, and the availability of legal information over the telephone in Arizona.
• Through grantees’ efforts, individuals with developmental disabilities have their complaints of abuse, neglect, discrimination, and other civil rights violations addressed in varied settings. In addition to addressing rights violations on a case-by-case basis, many states and Territories support programs to prevent these violations from occurring in the first place. Wyoming provides a variety of resources specially designed for people with developmental disabilities who become victims of crime. California provides individuals with developmental disabilities and their families and caregivers with health and safety training designed to minimize risk of abuse and keep people with developmental disabilities safe.

ADD’s grantees are committed to bringing the American dream to individuals with developmental disabilities. This report documents and celebrates their efforts to secure choices and control for individuals with developmental disabilities and their families. Through the efforts of ADD’s grantees, individuals with developmental disabilities have greater freedom and independence regarding where and with whom they live, and where they work. They have better access to health care, education, child care, transportation, and recreation and are protected from abuse, exploitation, and denial of rights. It is a great story and a powerful record!

Together, we believe these policies, grants, and advocacy activities establish a powerful record of achievement in service to individuals and families challenged by developmental disabilities.

/s/
Patricia A. Morrissey, Ph.D.
Commissioner
Administration on Developmental Disabilities