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

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.