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

Executive Summary

As required by the Developmental Disabilities Assistance and Bill of Rights Act of 2000 (DD Act), the fiscal year 2003-2004 report is based on the analysis of individual grantee reports submitted annually to this Department. The report has been organized to reflect the achievements of ADD’s grantees: the State Councils on Developmental Disabilities (Councils), Protection and Advocacy Agencies (P&As), University Centers for Excellence in Developmental Disabilities (UCEDDs), and Projects of National Significance (PNS).

ADD’s goal and responsibility 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.

In order to best showcase ADD’s achievements, this report is structured around ADD’s Program Assessment Rating Tool (PART) Long Term Goals and Annual Measures, which were approved by the Office of Management and Budget (OMB) in fiscal year 2002.

The PART was developed to assess the effectiveness of Federal programs and help inform management actions, budget requests, and legislative proposals directed at achieving results.

The PART examines various factors that contribute to the effectiveness of a program and requires that conclusions be substantiated with evidence. The PART assesses if and how program evaluation is used to inform program planning and to corroborate program results.

ADD’s PART measures are the same measures used to evaluate its results in compliance with the Government Performance and Results Act (GPRA). Highlights of this report, as structured by the PART/GPRA performance measures, are as follows. It should be noted that these numbers, and other statistics throughout this report, are measures of persons served by each grantee in specific issue areas. In a given year, one person may be assisted by multiple programs; these statistics refer to the number of services rendered rather than the number of people served:

Individuals with developmental disabilities are more independent and self-sufficient as a result of employment, transportation, housing, and health services

Employment:

• Through the activities of 61 UCEDDs, 70,806 people participated in projects that helped individuals with developmental disabilities to acquire, retain, or advance in employment.
• Forty Councils reporting on this priority made employment more available or obtainable for 2,937 people with developmental disabilities.
• Thirty-nine P&As reporting on this priority supported 391 people with developmental disabilities in obtaining or maintaining employment consistent with their interests, abilities, and needs.

Transportation:

• UCEDD projects resulted in 32,965 people with developmental disabilities having increased access to accessible, reliable transportation.
• Twenty-two Council programs aimed at improving transportation options helped 17,241 people with developmental disabilities get to work, school, church, health appointments, and other important needs and services, furthering their independence.
• Thirty-three P&As helped 165 people with developmental disabilities determine ways of getting where they needed to go.

Housing:

• UCEDDs enabled 37,000 people to participate in projects promoting equal access to community housing, including assistance related to renting, owning, or modifying an apartment or house.
• Twenty-eight Councils made housing more accessible for 2,867 people with developmental disabilities by participating in deinstitutionalization efforts and ensuring that those with independence can continue to maintain it.
• Due to the efforts of P&As, 494 individuals were able to obtain or retain a residence and live where and with whom they chose.

Health:

• Through UCEDD projects, 110,752 people participated in activities that allowed individuals with developmental disabilities to acquire the knowledge and skills to gain access to appropriate health services.
• Council activities in 24 States increased health care availability for 8,666 individuals by educating health professionals on the needs of people with developmental disabilities, teaching self advocacy, and encouraging facility accessibility conversions.
• A total of 52 P&As increased access to affordable health care for 1,362 individuals with developmental disabilities by providing them with advice, advocacy training, legal intervention, or other forms of assistance.

Children with developmental disabilities are integrated through inclusive education, early intervention, and child care

• Due to the efforts of UCEDDs, 38,989 people participated in projects that allow families of children with developmental disabilities to have access to appropriate, accessible child care services.
• UCEDD projects allowed 136,359 people to participate in activities supporting the increased availability of inclusive and appropriate education for people with developmental disabilities.
• Sixteen Councils worked to increase availability of quality child care for 2,048 families who needed accessible child care.
• Councils in 43 States increased the knowledge, capabilities, and self-advocacy skills of 27,351 students with developmental disabilities and their families to ensure the schools they attend are providing inclusive and appropriate local educational opportunities.
• A total of 15 P&As assisted 35 families in finding or maintaining child care that met the needs of both the parent and the child.
• By working with parents, educators, school administrators, and policy makers, 56 P&As helped to ensure that 11,289 students with developmental disabilities gained or maintained access to appropriate educational opportunities in their local area.

Individuals with developmental disabilities have better quality services and support

• UCEDD programs allowed 62,024 people to participate in activities that improve services, support, and assistance available to people with developmental disabilities. Through the activities of 46 Councils, quality assurance was advanced for 87,358 people with developmental disabilities, increasing their safety or personal welfare and maintaining their personal authority through training in self advocacy, information dissemination, and public awareness.
• Thirty-nine Councils helped 45,636 people with developmental disabilities and their families take advantage of available local community services.
• A total of 56 P&As secured or maintained quality assistance for 5,917 people with developmental disabilities, increasing their safety and/or personal welfare and helping them to maintain their personal authority.

Individuals with developmental disabilities are trained and active in self-advocacy

• Through the efforts of 48 Councils, 41,200 people with developmental disabilities were trained in leadership, self-advocacy, and self-determination, ensuring their ability to make choices for their lives.
• The activities of 39 Councils helped 1,851 people with developmental disabilities or their family members to attain membership on public and private bodies and boards, enabling them to speak out on behalf of themselves and others with disabilities.

Individuals with developmental disabilities have their complaints of abuse, neglect, discrimination, or other human or civil rights violations addressed

• A total of 56 P&As investigated and, if necessary, corrected instances of abuse, neglect, discrimination, or rights violations, ensuring that people with developmental disabilities live free from abuse and neglect, and preserving their ability to make choices for their lives.

The information highlighted above is a representative sample of the activities performed in fiscal years 2003 and 2004 in order to improve the lives of people with developmental disabilities.

ADD is pleased with the achievements of its grantees and with the significant progress that has been made, but recognizes the need for additional improvement of the services and opportunities available to individuals with developmental disabilities. We look forward to continued work with our partners and grantees to continue to meet the challenges that lie ahead, and to strive to achieve a better way of life for all Americans.

Additional data are provided throughout the body of this report, and detailed statistical tables are available in Appendix A.

How this Report is Structured

Chapter 1: The Administration on Developmental Disabilities provides an overview of the major ADD grant programs established through the DD Act, explaining the unique role that each grant program plays in improving the lives of people with developmental disabilities.

In Chapter 2, detailed examples of ADD program achievements are structured around OMB’s PART Performance measures.

Additionally, the report provides information regarding accountability (Chapter 3) and Projects of National Significance (Chapter 4).

Chapter 5: DD Network Collaborative Projects, Activities, and Progress gives an overview of how collaboration allows ADD’s grantees to maximize the impact their programs have on the lives of people with developmental disabilities. Chapter 6: Technical Assistance and Interagency Activities provides information about the technical assistance ADD offers its grantees, and discusses ADD’s participation in interagency committees. Chapter 7: New Freedom Initiative Activities explains the Supreme Court’s Olmstead Decision and President George W. Bush’s New Freedom Initiative, and ADD’s contribution to that initiative.

Appendix A of this report provides detailed statistical information regarding the outcomes of the various initiatives supported by ADD’s grantees. Appendix B lists contact information for all grantees.

Though it cannot possibly describe the entire scope of activities conducted by ADD’s grantees, ADD hopes that this report will give readers a sense of how these programs work to improve the lives of all Americans and to help individuals with developmental disabilities achieve greater independence and self-sufficiency.