2005–2006 Bi-Annual Report to Congress

Executive Summary

The Administration on Developmental Disabilities (ADD) is committed to the idea that the American dream belongs to everyone. Our mission, and the mission of our grantees, is to help Americans with developmental disabilities in their pursuit of the American dream.

ADD grantees share a mission and vision: helping individuals with developmental disabilities to achieve greater independence and self-sufficiency in all facets of private and community life. Through education, advocacy, and the implementation of diverse projects, ADD grantees help individuals with developmental disabilities receive quality care and education, protect their health, excel in the careers of their choice, travel freely, live independently, participate in activities they find fulfilling, and make informed choices about the kinds of services and supports they receive.

In the past, people with developmental disabilities have often been on the receiving end of change, having very little voice in the laws that affect them, the kinds of services that are available to them, or the accommodations made for them in health, housing, education, and employment. Today, people with developmental disabilities are creating change by advocating for their rights and shaping the world around them. ADD encourages programs that promote and support that change. Through these programs, ADD is helping individuals with developmental disabilities to create an environment of self-sufficiency, inclusion, and acceptance for the current population as well as for future generations.

As required by the Developmental Disabilities Assistance and Bill of Rights Act of 2000 (DD Act), the Fiscal Year 2005–2006 report is based on the analysis of individual grantee reports submitted annually to this department. This report reflects the achievements of ADD’s four grant programs:

• University Centers for Excellence in Developmental Disabilities (UCEDDs);
• State Councils on Developmental Disabilities (Councils);
• Protection and Advocacy Systems (P&As); and
• Projects of National Significance (PNS).

Each type of grantee has a specific role to play and each complements the others, strengthening the reach and power of their respective State DD Network. Because each grantee has a distinctly different focus, their individual statistics and achievements should not be compared directly to one another. Data reflected in these pages are from individual grantees. The DD Act directs grantees to spend funds on initiatives recommended by people with developmental disabilities, family members and advocates. The law does not require grantees to engage in activities in each area of emphasis, thus the data reflects what people in a State consider important.

The information highlighted below is a representative sample of the activities undertaken by ADD’s grantees in Fiscal Years 2005 and 2006. For each grant program, we 1) highlight in an area of emphasis how a specific grantee had a positive impact on the lives of people with developmental disabilities and 2) provide national data for the same area of emphasis.

Please note that these numbers, and other statistics throughout this report, are measures of persons served by each grantee in specific issue areas. The DD Act directs grantees to spend funds on issues that individuals with developmental disabilities, families, and advocates have asked the grantees to address. Grantees have the flexibility to focus on one or more areas of emphasis listed in the DD Act: employment, health, education and early intervention, housing, transportation, child care, recreation, and quality assurance.

Public input from individuals with developmental disabilities is the basis of each grantee’s annual planning process: how many areas to invest in, the amount invested, and what to do with the ADD funDs received. Thus, given that any grantee’s program focus is subject to change each year, ADD does not promote or endorse comparisons among grantees, programs, or across years for individual grantees or across grantees.

The outcome measures shown in these pages are a representative sample of outcome measures reported in the grantees’ annual Program Performance Reports.

UCEDDs EMPLOYMENT

The Illinois UCEDD created the Partner for Inclusive Employment (P.I.E.) Coalition to address the issue of a high unemployment rate among people with disabilities. P.I.E. coalition members come from government agencies, non-profit groups, advocacy organizations, and corporate entities. The focus of this grass-roots effort is to develop and implement an industry-friendly protocol for people with disabilities in the job market.

The P.I.E. model is a Job-Match Fair where job-seekers and employers are both prescreened, promoting successful matches between both. The program was nominated as a finalist for the Midwest region's Council of State Governments' Innovations Award.

The National Picture

In Fiscal Year 2006, 113,195 people participated in Nationwide UCEDD projects aimed at helping individuals with developmental disabilities to acquire, retain, or advance in employment in integrated settings in a community. Because UCEDDs only recently initiated their current system of data collection, comparative statistics are not available for Fiscal Year 2005.

Councils CHILD CARE

In Louisiana, the Council funded Partnerships For All Children Together (Project PACT). This project was designed to enhance and expand the capacity of child care providers to support and include young children with disabilities within community child care environments in the Greater New Orleans area. Project PACT uses a community building process designed to establish and maintain long-term relationships across child care providers and administrators, early intervention specialists, early intervention system administrators, and families. General knowledge workshops are offered free to any interested family member, child and family care providers, and early intervention specialists. The project also provides long-term, intensive support to a selected group of child care providers that have enrolled children with disabilities. Project PACT coordinates on-site follow-up to support families, child care providers, and early intervention specialists in addressing the individual needs of young children with disabilities.

The National Picture

In Fiscal Year 2005, 3,092 families of children with developmental disabilities across the Nation benefited from expanded availability of affordable, appropriate child care with accessible facilities. In Fiscal Year 2006, 2,636 people were reached.

P&As Education

“Maggie’s” mom contacted the Alabama P&A because she was concerned about her daughter’s education. Maggie was nine years old at the time, and has autism. At the time her mother contacted the P&A, Maggie had been taken out of school and was being home schooled because her mother objected to Maggie’s educational placement—a selfcontained classroom and access to non-disabled peers only for lunch and gym. Maggie’s mom wanted her daughter educated in a regular education classroom. She believed Maggie could handle such a placement and would benefit academically and socially from more interaction with the larger school community. The P&A represented Maggie at an Individualized Education Program (IEP) meeting, advocating for an appropriate educational placement with supports. As a result of the P&A's intervention, Maggie has returned to school and is receiving a significant amount of time on a daily basis in the regular education classroom. She receives only math and language arts instruction in the self-contained class, and the remainder of her day is spent in an inclusive environment, interacting with her peers.

The National Picture

In Fiscal Year 2005, P&As worked with parents, educators, school administrators, and policy makers Nationally to ensure that 11,736 students with developmental disabilities gained or maintained access to appropriate educational opportunities in their local areas. In Fiscal Year 2006, 12,242 people were reached.

Projects of National Significance

In New Mexico, a Family Support 360 program has partnered with a Native-American nonprofit organization to provide a comprehensive array of culturally appropriate services to families who have a child with a developmental disability. Project staff with laptops travel to four Pueblos, work with tribal leaders, and visit families in need at their own homes. A steering committee comprised of families, tribal members, and key agencies oversees the implementation of the four centers. This project recognizes the sensitive need to balance tribal sovereignty with State and Federal laws.

The National Picture

In Fiscal Years 2005 and 2006, PNS grants funded 21 Family Support 360 programs as well as 15 Youth Centers and several data collection projects. 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 in the services and opportunities available to individuals with developmental disabilities. We look forward to working with our partners and grantees to continue to meet the challenges that lie ahead, and to create a bridge to a better way of life for all Americans.

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.

Chapter 2: Collaboration, gives examples of ADD collaboration among ADD’s grantees.

Chapters 3, 4, and 5 provide profiles of grantee programs and an overview of outcome statistics, structured around ADD’s areas of emphasis.

Additionally, the report provides information regarding Projects of National Significance (Chapter 6) and Accountability (Chapter 7).

Chapter 8: Emergency Preparedness gives an overview of ADD’s grantees efforts to ensure that the disability community is informed and protected in the event of an emergency.

Chapter 9: Technical Assistance and Interagency Activities provides information about the technical assistance ADD offers its grantees and discusses ADD’s participation in interagency committees.

Chapter 10: 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 this report is not a comprehensive reflection of all the support which ADD and its grantees provide, it is a comprehensive sampling 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.