2003–2004 Bi-Annual Report to Congress

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.