2005–2006 Bi-Annual Report to Congress

A Message from Commissioner Patricia A. Morrissey

Administration on Developmental Disabilities

The American dream belongs to everyone.

The Administration on Developmental Disabilities (ADD) is built on this belief, and in partnership with our grantees, we work to make that dream accessible to Americans with developmental disabilities. We believe that if the rights of any segment of society are denied, all people's rights are imperiled.

Historically, people with developmental disabilities have often been treated as second class citizens—segregated in educational settings, deprived of personal autonomy, left out of public policy, and not fully included in their communities. Fortunately, this is changing. The voices of people with developmental disabilities are being heard, and changes in policy are a testament to the power of those voices. ADD is committed to ensuring that those voices continue to be heard—and understood. We are dedicated to the ongoing fight for the personal and civil rights of individuals with developmental disabilities.

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

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

“The purpose of this title (Title I, P.L. 106-402(b)) 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”

This legislation exists to address a problem: that historically, individuals with disabilities have often been isolated and segregated from the rest society. Individuals with disabilities experience discrimination every day. Manifestations of discrimination include archaic policies and practices that do not fully meet the needs of Americans with developmental disabilities as well as facilities and programs that have not been modified to permit inclusion of people with disabilities. Individuals with developmental disabilities may experience inferior services, programs, activities, benefits, jobs, or other opportunities.

In order to combat this discrimination, ADD directs four grant programs authorized by the DD Act. The four ADD grant programs are: University Centers for Excellence in Developmental Disabilities (UCEDDs), State Councils on Developmental Disabilities (Councils), State Protection and Advocacy Agencies (P&As), and Projects of National Significance (PNS).

ADD grantees in each State work cooperatively with other grantees and with individuals, businesses, and communities to form statewide networks of support that are tailored to positively impact the specific needs people with developmental disabilities within a particular State, city, or community. For example, the needs of individuals with developmental disabilities in rural Arkansas may be significantly different from the needs of individuals in midtown Manhattan. Because ADD funding supports at least three grantees in every State, grantees are able to meet the specific needs of the people and communities with whom they are most familiar.

ADD’s grantees reach out to individuals with developmental disabilities and their families in a variety of ways. The DD Act directs grantees to assist individuals with developmental disabilities by providing support in one or more areas, including: child care, education and early intervention, health, employment, housing, transportation, and recreation. In addition, ADD grantees are directed by the DD Act to sponsor projects in quality assurance to protect the civil and human rights of people with developmental disabilities, protect them from abuse and neglect, and ensure that they have access to high quality services and supports.

People with developmental disabilities and their families influence how grantees use the funds they receive from ADD. As required by the DD Act, grantees to consider the suggestions, knowledge, experience, and opinions of individuals with developmental disabilities to shape the standards by which programs and policies operate.

ADD and its grantees are also empowered by two initiatives of President George W. Bush related to individuals with disabilities. First, President Bush launched the New Freedom Initiative on February 1, 2001. The New Freedom Initiative is intended 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. These 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 Executive Order 13127 in which he directed Federal agencies to address the decision in the Olmstead case (Olmstead v. L.C., 527 US 581 (1999)). In that decision, the Supreme Court held that the Americans with Disabilities Act requires States to place qualified individuals with mental disabilities in community settings rather than institutions whenever possible.

This report tells stories about ADD’s grantees and how they have changed lives – through assisting individuals with developmental disabilities to advocate for themselves and through ensuring access to education, fostering integration into communities, embracing new technologies, and providing opportunities.

Highlights include:

• As a result of grantees’ efforts, children with developmental disabilities and their families have access to better child care options. The Arkansas UCEDD supports the “Welcome the Children” project in order to ensure that quality child care programs are available to Spanish-speaking families affected by disabilities.
• Grantees worked to ensure that the educational needs of children with developmental disabilities were met as the child progressed from pre-school through elementary and secondary school and into adulthood. One example involves “Carl,” an 11-year-old Navajo boy with developmental disabilities who was attending a public school in an extremely segregated setting. Carl’s parents requested the help of the Arizona P&A, and through their advocacy, Carl received comprehensive independent evaluations and is now placed in the regular classroom for a majority of the school day.
• Grantees supported programs that helped individuals with developmental disabilities lead healthy lives. For example, the Texas Council funded several projects that allowed parents to train pediatric residents on the delivery of longterm care to children with chronic illness or disabilities. The Houston Project trained 43 pediatric residents and 13 new parent teachers. In San Antonio, 25 pediatric residents and two parent teachers were trained.
• As a result of grantees’ work, people with developmental disabilities were able to obtain or maintain employment opportunities consistent with their interests, abilities, and needs. The Alaska UCEDD supports the Self-Employment Training Grant program, designed to help individuals with developmental disabilities find success and fulfillment in self-employment.
• Grantees worked to increase the availability of accessible, reliable transportation. The Pennsylvania Council developed and supported the Persons with Disabilities Transportation Program. This service provides transportation for individuals with disabilities, especially in rural areas where other transportation options are minimal.
• Grantees increased the inclusion of people with developmental disabilities in community activities, public events, social gatherings, and other everyday diversions. New Hampshire’s P&A is working to improve the restaurant experience for diners with disabilities. The Rolling Gourmet offers diners with disabilities the ability to review restaurants and have their reviews publicized for other diners to consider when choosing a restaurant.
• Grantees helped improve the quality of life for individuals with developmental disabilities. In Vermont, a Family Support project funded by a PNS grant empowered families to train other families to be self-advocates. Local parents who have encountered the service system first-hand were hired on a part-time basis to assist other parents in navigating the service system. Peer navigators also provide guidance, comfort, and encouragement to families in crisis. A statewide management team, which includes family members, assists the peer navigators with identifying resources and locating services.

I am proud to lead the Administration that oversees these efforts, and I believe that the achievements of these grantees have done much to advance the civil and personal liberties of individuals with developmental disabilities, helping to secure the rights and improve the lives of the larger community. Through the efforts of ADD’s grantees in Fiscal Years 2005 and 2006, individuals with developmental disabilities received child care and early intervention services that addressed their needs early, providing a foundation for a better life.

They received quality educational services in classrooms with their neighbors and peers. Programs and other support were made available to help them live healthier lives, pursue careers that interested and excited them, and have access to transportation that allowed them to travel to the places they wanted to go. They were able to enjoy recreational and social activities, and become contributing members of their communities. They received services that not only helped them as individuals, but supported their families as a whole. I believe that by empowering individuals and families to make choices and advocate for themselves, we improve their quality of life, both in the present and in future generations.

I am pleased to present this report as a record of the achievements of ADD’s grantees. This report documents and celebrates the efforts of ADD’s grantees to secure choices and control for Americans with developmental disabilities and their families, and to support these individuals in the pursuit of their dreams.

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