The American Dream Belongs to Everyone:

A Report to Congress, the President, 
and the National Council on Disability 

Fiscal Years 2003-2004 

Prepared by the 

Administration on Developmental Disabilities 

Administration for Children and Families 

U.S. Department of Health and Human Services 

The American Dream Belongs to Everyone: A Report to Congress, the President, and the National Council on Disability 

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. 

2

The American Dream Belongs to Everyone: A Report to Congress, the President, and the National Council on Disability 

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, ADDs 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 Leavitts goals for the 
Department of Health and Human Services to: 

Transform the health care system by eliminating inequalities; 

The American Dream Belongs to Everyone: A Report to Congress, the President, and the National Council on Disability 

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. 
ADDs 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 ADDs 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, ADDs grantees play a central role in bringing the American dream to individuals with 
developmental disabilities and their families. 

This report tells stories about ADDs 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. 

The American Dream Belongs to Everyone: A Report to Congress, the President, and the National Council on Disability 

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. 
ADDs 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 ADDs 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. 

Patricia A. Morrissey, Ph.D. 

Commissioner 
Administration on Developmental Disabilities 

The American Dream Belongs to Everyone: A Report to Congress, the President, and the National Council on Disability 

The American Dream Belongs to Everyone:
A Report to Congress, the President, and the National Council on Disability
Prepared by the 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 ADDs 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). 

ADDs 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 ADDs achievements, this report is structured around ADDs 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. 

ADDs 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. 

The American Dream Belongs to Everyone: A Report to Congress, the President, and the National Council on Disability 

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. 

The American Dream Belongs to Everyone: A Report to Congress, the President, and the National Council on Disability 

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 

The American Dream Belongs to Everyone: A Report to Congress, the President, and the National Council on Disability 

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 OMBs 
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 ADDs 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 ADDs participation in interagency committees. Chapter 7: New 
Freedom Initiative Activities explains the Supreme Courts Olmstead Decision and President 
George W. Bushs New Freedom Initiative, and ADDs contribution to that initiative. 

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

Though it cannot possibly describe the entire scope of activities conducted by ADDs 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. 

The American Dream Belongs to Everyone: A Report to Congress, the President, and the National Council on Disability 

Chapter 1: The Administration on Developmental Disabilities 

The U.S. Department of Health and Human Services, through the Administration for Children 
and Families, has delegated responsibility to the Administration on Developmental Disabilities 
(ADD) to manage four grant programs. These programs are authorized under the Developmental 
Disabilities Assistance and Bill of Rights Act of 2000 (DD Act) to ensure that individuals with 
developmental disabilities and their families not only receive the services and supports they 
need, but also help to plan and design those services. 

The four ADD grant programs are: 

Protection and Advocacy Agencies; 
State Councils on Developmental Disabilities; 
University Centers for Excellence in Developmental Disabilities Education, Research, 
and Service; and 
Projects of National Significance. 
Each ADD grant program plays a unique role in the lives of people with developmental 
disabilities through a range of activities such as: 

Upholding and advancing their civil and human rights; 
Researching and planning of long-term systems change; 
Training health care professionals and other specialists; 
Educating policymakers and the public; 
Testing innovative service models to determine their effectiveness; 
Training individuals as self-advocates; and 
Disseminating cutting-edge research findings. 
ADDs grant programs received funding from ADD in the amounts of $144.8 million 
and $149.9 million in fiscal years 2003 and 2004, respectively. 

ADD grantees in each State work collaboratively with other grantees and with consumers, 
businesses, and communities to form statewide networks of support that are tailored to meet the 
needs of individuals with developmental disabilities. Under the DD Act, ADD programs are 
required to support capacity building activities that will benefit people with developmental 
disabilities as well as individuals with other types of disabilities. Capacity building activities are 
defined as activities intended to build a system for sustaining and expanding the successful 
delivery of services, support and other assistance to individuals with developmental disabilities 
and their families. 

ADD is required by the DD Act to prepare a report, at least every two years, for the President, 
Congress, and the National Council on Disability, detailing the recent goals and outcomes of 
these four programs. 

The American Dream Belongs to Everyone: A Report to Congress, the President, and the National Council on Disability 

State Councils on Developmental Disabilities (Councils): Councils are composed of 
individuals with significant disabilities, their parents and family members, and representatives of 
State agencies that provide services to such individuals. Council members develop and support 
local and system-wide services that enable persons with developmental disabilities to achieve 
their maximum potential and participation in their communities, thereby leading independent and 
fulfilling lives. 

Councils help people with developmental disabilities by: 

Developing a State Plan that lays out activities for demonstration of new approaches for 
enhancing their lives; 
Conducting training activities; 
Educating the public about their abilities, preferences, and needs; 
Providing information to policymakers to increase their opportunities; 
Supporting their inclusion in communities; and 
Eliminating barriers to full participation in community life. 
Grants are allotted on the basis of population, financial need, and service 
needs to the 55 Councils. In fiscal year 2003, ADD had $71.1 million 
available for grants to the Councils. In fiscal year 2004, $73.1 million was 
available for Council grants. 

Protection and Advocacy Agencies (P&As): P&As protect and advance the legal and human 
rights of individuals with developmental disabilities. The DD Act requires each State to 
establish a P&A system to empower, protect, and advocate on behalf of persons with 
developmental disabilities. P&A agencies must be independent of service-providing agencies. 
P&As are authorized to provide information and referral services, and to exercise legal, 
administrative, and other remedies to resolve problems for individuals and groups of clients. 
P&As are also required to reach out to people who traditionally have been unserved or 
underserved. The following Federal laws other than the DD Act give P&As the power to assist 
people with types of disabilities other than developmental disabilities, including mental illnesses: 

Protection and Advocacy for Individuals with Mental Illness (PAIMI) Act  42 U.S.C. 
10801 et seq. 42 C.F.R.  51.1 to 51.46; 
Protection and Advocacy of Individual Rights (PAIR)  29 U.S.C. 794e; and 
Assistive Technology for Individuals with Disabilities (PAAT)  29 U.S.C. 3012(a)(1). 
The DD Act authorizes P&As to investigate incidents of abuse and neglect. When necessary, the 
P&As obtain or help clients to obtain records of previous abuse or neglect. The P&As help 
people with disabilities navigate the legal system to achieve resolution. Although individuals 
with developmental disabilities compose less than two percent of the total population of the 
United States, they are among the most vulnerable members of society. P&As often begin 
working on a case to help a single individual and conclude by attempting to correct the 
underlying problem, be it abuse, neglect, discrimination, lack of information, misinformation, or 

The American Dream Belongs to Everyone: A Report to Congress, the President, and the National Council on Disability 

service system failure. P&As ensure that individuals with developmental disabilities have the 
ability to exercise their rights to make choices, contribute to society, and live independently. 

Fifty-seven P&As receive grants on the basis of population, financial need, and 

service needs. In fiscal years 2003 and 2004, available grant monies from ADD 

were $36.3 million and $38.4 million, respectively. 

University Centers for Excellence in Developmental Disabilities Education, Research, and 
Service (UCEDDs): ADD administers a discretionary grant program providing for operational 
and administrative support to UCEDDs in all U.S. States and Territories as part of a national 
network to support interdisciplinary training, exemplary services, technical assistance, and 
information dissemination activities. UCEDDs serve as liaisons between academic spheres and 
service delivery systems to positively affect the lives of individuals with developmental 
disabilities and their families by increasing their independence, productivity, and integration into 
communities. 

Activities of UCEDDs include: providing interdisciplinary pre-service preparation and in-service 
training of leadership, professional and paraprofessional personnel; research on developmental 
disabilities and living with such disabilities, offering community service training for persons 
with developmental disabilities, their families, professionals, and volunteers; and dissemination 
of information and findings which validate best practices and contribute new knowledge to the 
field of developmental disabilities. 

In fiscal year 2003, $25 million was available in grants from ADD for the 61 
UCEDDs. In fiscal year 2004, $27 million was available.

Projects of National Significance (PNS): Short-term projects (between one and five years) 
provide ADD with the opportunity to work on targeted issues important to the developmental 
disabilities community. PNS projects focus on emerging areas of concern for persons with 
developmental disabilities and their families by working with the developmental disabilities 
network in one or more States and other interested public and private non-profit entities. 

Project issues transcend the borders of States and Territories, while project designs are oriented 
to permit local implementation of practical solutions. Examples of PNS activities include: data 
collection and analysis; technical assistance to Councils, P&As, and UCEDDs; technical 
assistance to develop information and referral systems; family support projects; youth projects; 
projects which improve supportive living and quality of life opportunities; projects to educate 
policymakers; and efforts to pursue Federal interagency initiatives. 

In fiscal years 2003 and 2004, ADD had available $12.4 million and $11.6 
million, respectively, to support PNS discretionary grants. 

The American Dream Belongs to Everyone: A Report to Congress, the President, and the National Council on Disability 

Presidential Initiatives: Some of the projects that ADD grantees execute originate from 
Presidential initiatives. In February of 2001, President Bush announced the 
New Freedom Initiative, a plan that delineates aggressive goals to improve 
the lives of people with disabilities. The initiative outlines the Bush 
Administration's determination to increase access to assistive technology, 
expand educational opportunities, promote community inclusion, increase 
access to transportation, and encourage independent living and 
homeownership for people with disabilities. Because the New Freedom Initiative is directly 
related to disability, ADD and its grantees have a major role in its implementation. ADD's 
efforts complement the work of many other agencies within the Department of Health and 
Human Services, as well as other Federal agencies within the Department of Education, 
Department of Housing and Urban Development, the Department of Labor, and the Department 
of Transportation. 

The American Dream Belongs to Everyone: A Report to Congress, the President, and the National Council on Disability 

Chapter 2 

2.1 Individuals with developmental disabilities are more independent and self-sufficient as 
a result of employment, transportation, housing, and health services 
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. To 
reach that goal, ADD grantees often focus on employment, housing, transportation, and health 
services, among other areas. Through education, advocacy, and the implementation of diverse 
projects, ADD grantees help individuals with developmental disabilities excel in the careers of 
their choice, travel freely, live independently, and make informed choices about the kind of 
services and supports they receive. 

In the 21st century, new technology and forward-thinking projects are helping ADD and its 
partners to achieve these goals. Changing technology impacts the lives of individuals with 
developmental disabilities on a daily basis, offering everything from new job opportunities to 
improved accessibility. 

Employment 

Locating and/or maintaining reliable employment is one of the most important steps individuals 
can take towards personal and financial independence. Yet this step can be significantly more 
difficult for individuals with developmental disabilities than it is for the general population. 
People with disabilities have an employment rate of about 30 percent, in comparison with 70 
percent of the population as a whole. Fourteen percent of people with disabilities who are 
seeking work are unemployed, compared with five percent of the population as a whole.1 

The Minnesota Governors Council on Developmental Disabilities (GCDD), funded by ADD 
under the State Councils on Developmental Disabilities (Council) grant program, is one of many 
ADD grantees calling attention to the ability of people with developmental disabilities to fill 
positions created by new technology. Through a digital imaging demonstration project, 18 
workers with developmental disabilities were employed by the Minnesota Department of Human 
Services to scan approximately 28,600 pages of records. 

At the conclusion of this pilot project, two individuals with developmental disabilities gave a live 
demonstration of scanning procedures at the December 2003 Association of Minnesota Counties 
Conference in Minneapolis. The project resulted in the creation of a resource package designed 
to teach other organizations how to replicate the digital imaging program, and this information 
has been shared with hundreds of agencies. GCDD also developed a marketing presentation to 
prompt other agencies to consider the savings that can be realized by converting paper records to 
electronic formats, as well as the availability of people with developmental disabilities who want 
to work and are well able to perform digital imaging functions. As a result, 22 individuals with 
developmental disabilities were employed by two government agencies to scan records. 

Laplante, Mitchell P.; Kennedy, J.; Kaye, H. Stephen; and Wenger, Barbara L.; Disability Statistics Abstract No. 11 Disability and 
Employment, Disability Statistics Rehabilitation Research and Training Center, University of California- SF, published by US Dept. of 
Education, National Institute on Disability and Rehabilitation Research (NIDRR); 1996. 

The American Dream Belongs to Everyone: A Report to Congress, the President, and the National Council on Disability 

The following table, and others like it in this report, represent the outcomes of the many projects 
funded and sponsored by ADDs three grantees: State Councils on Developmental Disabilities 
(Councils), Protection and Advocacy Agencies (P&As), and University Centers for Excellence in 
Developmental Disabilities Education, Research, and Service (UCEDDs). It should be noted 
that many of these programs require longer than one year to yield noticeable results. 

Council Employment Statistics 

Adults have jobs of 
their choice through 
Council efforts 
Employers provided 
vocational support to 
students on the job 
FY 2003 FY 2004 FY 2003 FY 2004 
Total 5,156 2,937 995 1,164 
Number of 
Councils 
35 40 24 24 

Like the technology job market, the health care field is growing rapidly and presents significant 
career opportunities for individuals with developmental disabilities. The U.S. Department of 
Labor projected that 12 of the 25 fastest-growing occupations during the 1996-2006 period 
would be in health-care related fields. The health care field encompasses widely diverse jobs, 
and some of the many career options include nurses, nurses aides, dental assistants, pharmacy 
packaging, and medical records specialists. 

The Center of Self-Determination at Oregon Health & Science University, an ADD-funded 
University Center for Excellence in Developmental Disabilities (UCEDD), has proposed a 
project to increase the number of individuals with developmental disabilities in health care and 
human services jobs. This project will allow at least 200 individuals to participate in health care 
training and will assist at least 100 individuals in unsubsidized employment in these career areas. 

UCEDD Employment Statistics 

Number of people reached through 
UCEDDs 
Activities in Employment 
FY 2003 FY 2004 
Total 29,990 70,806 

P&A Employment Statistics 

Adults obtained or maintained 
employment due to P&A interventions 
FY 2003 FY 2004 
Total 524 391 
Number of P&As 40 30 

Health Care 

The American Dream Belongs to Everyone: A Report to Congress, the President, and the National Council on Disability 

While the health care field offers numerous career opportunities, obtaining quality health care 
services can present challenges for some people with developmental disabilities. Individuals 
may require support when filling out insurance forms, filing claims, or making medical 
decisions. They may need assistance securing transportation to and from health care services or 
finding a qualified medical professional with the training to work effectively with individuals 
with disabilities. The process can be overwhelming. 

Many grantees focus on simplifying this process by bringing medical information and health care 
services directly to the individual. One example of this is a mobile dental services project 
funded by the Nevada Council on Developmental Disabilities. The Donated Dental Services 
Program received initial funding from the Council as a demonstration project in collaboration 
with the Community College of Southern Nevada. The project matched patients geographically 
with dentists who volunteered to donate their services to the program. The project also included 
a mobile dental facility (Miles for Smiles) to travel to the various elementary schools in the Las 
Vegas area to provide free dental care and education about dental hygiene. The Donated Dental 
Services program serves an average of 38 people with developmental disabilities per year and 
now includes training college interns both in dental services and in advocating for systems 
change in health care for people with DD. The successful program has now been fully 
incorporated into the Colleges dental health care system, and fiscal year 2003 was the last year 
Council funding was required. 

The American Dream Belongs to Everyone: A Report to Congress, the President, and the National Council on Disability 

Council Health Care Statistics 

Number of People with 
Developemental Disabilities

30000 

FY 2003 

25000 

20000 

15000 

10000 

5000 

0 

17,682 
8,666 
12,730 
15,463 
8,312 
9,074 

FY 2004 
People have needed health People involved in systems People trained in systems 
services through Councils' advocacy on health care advocacy on health issues 
efforts 

Health related Activities 

Partners for Inclusive Communities, Arkansas UCEDD, is improving health care services to 
individuals with developmental disabilities by funding a continuing education training program 
to help medical professionals treat and communicate with people with developmental disabilities 
in an effective and appropriate manner. Training is provided to individuals in a broad range of 
medical professions, including physical therapists, speech therapists, occupational therapists, 
social workers, nurses, dieticians, and other health care professionals currently practicing in the 
state of Arkansas. 

Professionals living in rural areas of Arkansas face a series of challenges in developing and 
maintaining skills to work effectively with people who have disabilities. Training received may 
be outdated because of the many changes in the field of disabilities in recent years. New 
concepts are just starting to become a part of pre-service training in universities. Most 
continuing education is offered in larger sites and requires rural professionals to travel long 
distances at considerable costs. Partners for Inclusive Communities provides these professionals 
with training programs that meet their needs. 

The program collaborates with local and state agencies, professional organizations, and self-
advocacy groups to identify and develop training topics to be presented in one-day and two-day 
sessions. 

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Some training sessions, for example, have focused on providing updated information on 
emerging trends and current changes in the provision of services for persons with developmental 
disabilities. The training includes information on recent changes in the field of developmental 
disabilities. 

Other topics include sensitivity training designed to facilitate positive relationships between 
medical professionals and families. Two-day sessions entitled The Tears and Cheers of Parents 
and Professionals are now being presented. Professionals, consumers, and family members 
serve as presenters as appropriate. 

UCEDD Health Care Statistics 

Number of people reached through 
UCEDDs 
Activities in Health care issue and 
training 
FY 2003 FY 2004 
Total 167,011 110,752 

P&A Health Care Statistics 

Number of people who obtained or 
maintained health care due to P&A 
interventions 
FY 2003 FY 2004 
Total 1,749 1,362 
Number of P&As 50 52 

Transportation 

With the achievement of getting a job or securing appropriate medical services comes the need 
for reliable transportation. A persons ability to find and maintain employment, consult the 
health care professional of his or her preference, live in the location of his or her choosing, and 
participate in community activities is dependent on transportation to and from these services. 
This can pose greater difficulties for people with developmental disabilities than it does for the 
general population. Without access to transportation, even simple activities such as buying 
groceries and paying bills can be difficult or impossible to pursue. 

For people with developmental disabilities, reliable and accessible transportation can be the key 
to a more independent and self-sufficient life. Many individuals with developmental disabilities 
have no access to transportation at all or have to rely on family or friends to transport them. The 
availability of accessible transportation, either public or privately owned, provides an individual 
with a degree of personal freedom that would not be possible otherwise. 

The Mississippi Council on Developmental Disabilities is addressing this need for reliable and 
accessible transportation through an initiative intended to facilitate the development of a smart 
car designed to be used by people with developmental disabilities who are unable to have a 
regular vehicle modified to suit their needs. Initial development of the car was completed in 
fiscal year 2004. 

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Even with existing technologies for sedans, minivans, and vans, some individuals with 
developmental disabilities are unable to drive cars with standard adaptations. The smart car is 
the worlds first dedicated low-speed commuter car designed to be driven by a state-of-the-art 
drive-by-wire system. The research team anticipates that elements of adaptive technologies 
being employed in the project have the potential to help individuals with developmental 
disabilities overcome some physical, cognitive, and sensory limitations. Additionally, the team 
is looking into the possibility of developing a rear-entry system to accommodate a single 
wheelchair user. While the initial funding for the project has come to an end, the research is 
ongoing as Mississippi State Universitys Center for Advanced Vehicular Systems continues to 
work on the smart car. 

In the Commonwealth of the Northern Mariana Islands (CNMI), the Council 
collaborated with CNMI Legislators and a local business to establish transportation service 
systems for individuals with developmental disabilities on two islands, Tinian and Rota. A new 
van and seed money was provided by the Council to assist with the start up costs. The Council 
also provided orientation and training to the van operators and collaborated with the Department 
of Public Safety to instruct the van operators on CPR. Council efforts leveraged funds from Real 
Choice Systems Change to help offset the high cost of operating new systems. To ensure 
continued interest in addressing transportation issues and needs of residents with developmental 
disabilities from other islands, the council formed a transportation task force to explore 
increasing the availability of accessible transportation while maintaining the cost 
effectiveness and feasibility of several transportation service systems. 

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Council Transportation Statistics 

Number of People 
with 
Developmental Disabilities

30000 

FY 2003 

25000 

20000 

15000 

3,875 

10000 

5000 

0 

9,200 
17,141 
4,944 
4,655 
3,509 

FY 2004 
People have transportation People active in systems People trained in system 
services through Council advocacy about transportation advocacy about transportation 
efforts 

Transportation Related Activities 

The effect that transportation issues can have on other aspects of an individuals life can be seen 
in the story of Carlos, a young man with developmental disabilities. Carlos had a part-time job 
at a local grocery store. He enjoyed the work and performed the job functions well. However, 
when he missed several days of work due to difficulties with transportation, his employer 
threatened to fire him. Concerned about the possibility of losing his job, Carlos contacted the 
Louisiana Advocacy Center, Louisianas Protection and Advocacy Agency (P&A). The 
Advocacy Center staff assisted Carlos in obtaining more reliable transportation, thus ensuring 
that he would miss fewer days of work. He gained the independence afforded by reliable 
transportation, which allowed him to maintain self-sufficiency by keeping his job. 

P&A Transportation Statistics 

Number of people who have access to 
appropriate transportation due to P&A 
interventions 
FY 2003 FY 2004 
Total 201 165 
Number of P&As 32 33 

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UCEDD Transportation Statistics 

FY 2004 
32,965 
Number of people reached through 
UCEDDs
activities in transportation issues 

UCEDD Transportation statistics were not available for FY 2003. 

Housing 

Safe, independent, and accessible housing provides individuals with freedom and self-
sufficiency. Independent living allows individuals to achieve independence and become part of a 
community. It also gives people with developmental disabilities housing options other than 
nursing homes and group settings. 

Deborah is a 39-year old woman with developmental disabilities. She is deaf and 
communicates exclusively through sign language. As a result of misunderstandings and 
behavioral problems caused by Deborahs inability to communicate with those around her, she 
was repeatedly placed in living conditions that were more restrictive than her health care 
provider believed were necessary. For years, she lived in state institutions. Her involvement 
with the community was limited, and she became increasingly frustrated with her inability to 
communicate her needs to those around her. 

Staff of the South Carolina P&A recognized that many of the problems associated with 
Deborahs living situation could be alleviated by simply facilitating more effective 
communication. A Certified Sign Language Interpreter was brought in to work with Deborah 
and, as a result, P&A was able to better understand what Deborah wanted and needed, in order to 
help advocate on her behalf. 

Deborah moved out of the institution and into a home in the community. She attends regular 
church services. Her church has a large deaf population and provides a sign language interpreter. 
Additionally, she has become involved with the deaf community and is participating in many 
group activities that were impossible in her previous living environment. 

P&A Housing Statistics 

Number of people who have access to 
accessible housing due to P&A 
interventions 
FY 2003 FY 2004 
Total 591 494 
# of P&As 49 49 

Steps are being taken across the nation to reduce the number of individuals who live in 
institutional settings and to help people like Deborah find appropriate housing in the community. 

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The Georgia Institute on Human Development and Disability, an ADD-funded UCEDD, is 
sponsoring an ongoing study on Georgia citizens who have moved from institutional placements 
to community living. The study focuses on 38 individuals who formerly lived at Rivers 
Crossing, a residential facility for individuals with developmental disabilities in Athens, Georgia. 
These individuals moved from the facility to community residences across the state in the 
summer of 1996. By gaining access to long-term data from successful institutional closures, 
state officials can strengthen the transition process for future individuals moving from 
institutions to the community. 

Two initial phases of the study have been completed, but the project is ongoing in order to 
complete a comprehensive, multi-phase follow-up study of these individuals. Each follow-up 
phase focuses on housing, daily activities, employment, satisfaction, friendships, support, health, 
community roles, and future plans. Emphasis is also placed on changes in providers, moves 
from one residence to another, and community inclusion and choice. Project staff members 
conduct interviews with the individuals who moved from Rivers Crossing, their families, and 
their residential providers to learn about their lives and to assess the strengths and weaknesses of 
their transition into the community. 

Approximately one conference presentation per year will be developed from the follow-up study. 
When the study is complete, several detailed reports will provide information about the lives of 
people with developmental disabilities that will be used by policy makers and program 
administrators to improve the quality of community services in Georgia. 

UCEDD Housing Statistics 

Number of people reached through 
UCEDDs 
Activities in housing issues 
FY 2003 FY 2004 
Total 11,802 37,000 

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Council Housing Statistics 

Number of People with 
Developmental Disabilities

FY 2004 

8000 

FY 2003 

7000 

6000 

5000 

4000 

3000 

2000 

1000 
0 

4,616 
2,567 
444 
765 
1,973 
1,729 

Individuals have homes of their People moved from congregate Units of affordable, accessible 
choices through Council efforts settings to homes in community housing made available 

Housing Related Activities 

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2.2 Children with developmental disabilities are integrated through inclusive education, 
early intervention, and child care 
The Connecticut Council on Developmental Disabilities (Council) is currently funding the 
fourth year of the Understanding Special Education Project. During the three previous years that 
the project has been active, more than 916 parents and educational professionals in 93 school 
districts have participated in a 10-hour course designed to equip them with the skills they need to 
negotiate the special education system and improve its effectiveness for students with 
disabilities. 

As a result of the training provided by this project, parents reported feeling better equipped to 
advocate for their children and to actively participate in planning their child's education program. 
Educators reported having increased knowledge of special education laws and an improved 
ability to work collaboratively with families. 

Education-related initiatives like Connecticuts Understanding Special Education Project are an 
important component of the services that ADD and its partners provide. Developmental 
disabilities, by definition, begin before the age of 22. Therefore, the vast majority of individuals 
with developmental disabilities require assistance with education and early intervention issues. 
State Councils, P&As, and UCEDDs work extensively in this field: 

1. 
State Councils on Developmental Disabilities (Councils) work to educate parents, 
educators, and the community about inclusive education issues. 
2. 
Protection and Advocacy Agencies (P&As) focus substantially on educational issues. 
Historically, 80-90% of the workload and cases handled by P&As deal with securing an 
education in an inclusive setting for children with developmental disabilities. P&As have 
been involved in a large number of landmark cases and work closely with other 
collaborative partners, especially Councils and UCEDDs. 
3. 
University Centers for Excellence in Developmental Disabilities Education, Research, 
and Service (UCEDD), as mandated by law and by virtue of residing in universities, often 
work on promoting or securing inclusive educational opportunities for children with 
developmental disabilities, either by training the teachers or by educating the public. 
By working collaboratively as well as individually, ADD grantees are meeting the educational 
needs of individuals with developmental disabilities as they progress from early childhood 
through elementary and secondary school and into adulthood. Areas of focus include early 
intervention and child care, inclusive education, and the transition from school into the working 
world. 

Early intervention is a process that begins, between birth and three years of age, by correctly 
identifying children who have disabilities and making an assessment of their needs. Early 
intervention services are authorized in the Individuals with Disabilities Education Act (IDEA) to 
help children prepare for school by ensuring not only an appropriate education but access to 
necessary services and community support. 

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Through the funding of early intervention activities, New Yorks UCEDD, the Strong Center for 
Developmental Disabilities, is helping to ensure that children with developmental disabilities 
have the advantage of the best possible resources and services from the very beginning of their 
lives. The UCEDD-funded Regional Early Childhood Direction Center serves 11 counties, 
providing information, support, and referral assistance to parents and professionals who are 
concerned about a child with special needs or a developmental delay. Children are eligible for 
the service if they are between birth and five years of age, and are having problems performing 
the same functions as other children their age. This may include problems with: 
Sitting; 

Crawling; 
Walking; 
Eating; 
Speaking; 
Hearing; 
Seeing; 
Playing; and 
Getting along with others. 
The staff provides free consultation and assistance to parents and professionals and helps link the 
child and parent to the appropriate service. 

After developmental disabilities have been initially identified, it is important to secure the 
services and supports that will provide the child with a quality education, an independent 
lifestyle, and inclusion in the community. One of the first challenges that the parents of a child 
with developmental disabilities often face is locating accessible, affordable child care staffed 
with appropriately trained professionals. 

In New Mexico, the State Council on Developmental Disabilities is taking steps to expand the 
availability of appropriate child care with inclusive practices and staff trained to care for children 
with developmental disabilities. Through a Council-funded project, training and technical 
assistance that emphasizes inclusion is being provided to child care workers. Previously, 
training provided through the state child care certification agency did not include information on 
issues related to integration of children with disabilities in child care settings. The Council-
funded training has been well received, and the program has had a high rate of participation. In 
FY 2004, the new training model was expanded to include additional communities, and an effort 
is well underway to promote systems change through the initiation of this training on a statewide 
basis. 

Indianas UCEDD is taking similar steps to assure access to appropriate, inclusive child care. 
Through a collaborative partnership with several other agencies, the UCEDD created the 
Indiana Partnership for Inclusive Child Care. This project aims to develop a model inclusive 
child care system and to facilitate the coordination of a statewide system of accessible, family-
centered, developmentally appropriate child care. Emphasis is placed on providing supports, 
training and technical assistance for enhanced integration, as well as on coordination of existing 
community-based child care services. The project is also intended to increase retention of child 

The American Dream Belongs to Everyone: A Report to Congress, the President, and the National Council on Disability 

care providers and ensure consistency, thus increasing stability of care and continuity of services 
for children with developmental disabilities. In fiscal year 2004, the project was in its early 
stages, and over a three-year period, across all ninety-two Indiana counties, children with 
developmental disabilities and their families will benefit from improved child care services. 

The project includes resource and referral services to families. It also provides training and 
technical assistance to providers, families, and the community at large, as well as innovative 
distance learning technologies for outreach to underserved areas. Materials and procedures 
developed by the project will be incorporated into manuals and CD-ROM's and made available 
on the web. The project is constructed to allow replication by other states, thus enhancing and 
increasing inclusive child care in communities across the nation. 

When children with developmental disabilities are ready to move into a preschool or 
kindergarten setting, it is essential that they are provided with an environment that will create a 
foundation for successful lifelong learning. 

In Maine, the families of six preschool students with autism were concerned that their right to an 
appropriate early education was at risk. The children were attending a neighborhood pre-school 
as part of their early intervention program. The school offered developmental therapy as well as 
other services to meet the needs of the children, and the parents were pleased with the education 
their children were receiving. However, the local education agency decided to take measures 
that would require the children to travel outside of their community to attend a different 
preschool that served only children with disabilities. The parents of these children contacted the 
Disability Rights Center, Maines Protection and Advocacy Agency (P&A) for people with 
developmental disabilities. P&A advocated for the children and worked with the parents and the 
school. Through the efforts of the P&A staff, the children were able to remain in their integrated 
neighborhood program, rather than being isolated in a separate school. 

The following table represents the outcomes of the many projects funded and sponsored through 
ADDs three grant programs: State Councils on Developmental Disabilities (Councils), 
Protection and Advocacy Agencies (P&As), and University Centers for Excellence in 
Developmental Disabilities Education, Research, and Service (UCEDD). It should be noted that 
many of these programs require longer than one year to yield noticeable results. Also, a variety 
of factors may cause the numbers of individuals reached to fluctuate from one year to the next. 
Grantees may choose different areas to emphasize based on the needs of their communities, 
significant success in one year may mean that fewer people need assistance the next, and 
different projects may have varied approaches or goals that yield differing numbers. 

Council Child Care Statistics 

State Children in inclusive child 
care settings through 
Council efforts 
FY 2003 FY 2004 
Total 4,918 2,048 

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Number of 

12 

16

Councils 
P&A Child Care Statistics 

Obtained or maintained 
child care services due to 
P&A intervention 
FY 2003 FY 2004 
Total 56 35 
Number of 
P&As 
16 15 

The success of the P&As efforts in Maine was important because the children were allowed to 
remain in their local school, interacting with their peers. The P&As intervention helped to build 
a foundation for the parents to advocate for the childrens future needs. It also helped to educate 
the school district about the importance of inclusive education, which will hopefully lead to 
systems change. 

Inclusive education means that all students are based in age appropriate regular classrooms, and 
can access the services or special programs necessary to meet their individual needs. 

Every child has a right to belong to a community and to share common experiences with family, 
neighbors, and friends. Children with developmental disabilities have a right to a free, 
appropriate education in their local schools, rather than being isolated in separate special 
education programs. Working side by side with peers with varied skills and strengths helps all 
children to develop the skills necessary to live in a diverse community in the future. 

Historically, children and young adults with developmental disabilities were segregated from 
their peers who were not disabled for a variety of reasons. This separation compromised the 
quality of the education provided to children with developmental disabilities, and denied them 
the social interaction and community inclusion that they wanted and needed. These practices are 
changing, and ADD and its grantees advocate for inclusive education. Inclusive classrooms 
provide students with developmental disabilities with opportunities to build skills for interacting 
with people who do not have disabilities. Placing all students together teaches understanding 
and acceptance to younger generations, which in turn may build a foundation for community 
inclusion in the future. 

Mark is a young man with cerebral palsy who wanted to spend his last year of high school in 
an inclusive environment. He had always been educated in segregated settings, despite 
continued assurances from his school district that he would be moved to an inclusive school. 
When discussing vocational training as part of Marks education, the district only gave Mark the 
option of pursuing a career as a janitor, a job for which he was neither inclined nor suited. 
Additionally, this recommendation did not reflect Marks strengths and interests, namely his 
enthusiasm for auto mechanics. 

Concerned that the school district was not meeting Marks needs, Mark and his parents contacted 
Equip for Equality (EFE), the P&A in their state of Illinois. EFE filed for due process and the 
district was ordered to complete a comprehensive vocational evaluation. EFE also helped Mark 

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to enroll in his neighborhood high school for his senior year. He was accompanied to classes by 
an aide and received a modified curriculum, but was continuously with his peers. When Mark 
graduated from high school with his classmates, he received a standing ovation. 

Washingtons Special Education Advocacy Project is one of many ADD grantees projects 
designed to give families like Marks the information and resources they need to advocate for an 
appropriate education. The project, funded by the Washington State Developmental Disabilities 
Council, is in its fifth year. It provides several services to concerned parents and educators. An 
overview of these services is provided below: 

Ongoing information about special education issues is provided to interested individuals 
through an email list serve. 
Project staff present information at community meetings and keep the community 
informed about special education legislation and policy issues. 
Parents and professionals receive training so that they are better able to influence school 
district policy on inclusion. 
Parent coordinators develop and disseminate pertinent materials and information to 
parents and community members. The coordinators also assist parents in understanding 
their rights under the Individuals with Disabilities Education Act (IDEA), including 
connecting parents to legal advice through the Washington Protection and Advocacy 
System and other local resources to resolve compliance issues with school districts. 
The project ensures that families like Marks have the tools they need to make decisions about 
the kind of education that is appropriate for their child and the resources to overcome any 
obstacles that may they face in carrying out those decisions. This supports ADDs goal of 
capacity building. Capacity building activities are activities intended to build a system for 
sustaining and expanding the successful delivery of services, support and other assistance to 
individuals with developmental disabilities and their families. This can mean empowering a 
community, organization, or individual to gain the capacity to advocate for individual rights and 
bring about systems change. 

When Mark attended his neighborhood high school, one of the modifications made was 
providing him with an aide that accompanied him to his classes. Aides, assistants, or 
paraprofessionals can help ensure a students success in an inclusive setting. Paraprofessionals 
help in the inclusive classroom in a variety of ways and have a direct effect on students 
academic performance. They provide tutoring, implement teacher-developed instruction, provide 
personal care for students with developmental disabilities, observe the student and provide 
suggestions related to instruction, and participate in team meetings. 

The Center on Disability & Community Inclusion, an ADD-funded UCEDD in Vermont, is 
partnering with the State Department of Education to address the use of paraprofessionals in an 
integrated educational setting. The Vermont project is designed to develop, implement, and 
evaluate a model for the effective use of paraprofessionals to support students with disabilities in 

The American Dream Belongs to Everyone: A Report to Congress, the President, and the National Council on Disability 

general education classes. The model includes ten steps that can be used by teams of school 
personnel to utilize the recommended practices in ways that meet unique needs of individual 
schools and the students they serve. This approach provides school districts with a proven model 
that can be effectively replicated throughout Vermont and across the Nation, in any classroom 
from preschool through high school. 

FY 2004 Council Education Statistics 

2,541 Students transitioned 
from school to community 
and jobs 
2,424 Children transitioned 
from early intervention and 
pre-school to inclusive 
schools/classrooms 
18,432 Infants and young 
children have the 
services/support they 
needed to reach 
developmental goals 
27,351 Students have the 
education and support they 
need to reach their 
developmental goals 
P&A Education Statistics 

Students obtained or 
maintained inclusive 
education due to P&A 
interventions 
FY 2003 FY 2004 
Total 11,117 11,289 
Number 
of P&As 
57 56 

29

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UCEDD Education Statistics 

State Number of people reached 
through UCEDDs 
Activities in Education 
FY 2003 FY 2004 
Total 78,049 136,359 

When students like Mark graduate from high school, it is important that they receive the 
assistance they need to make a smooth transition to a higher education institution or the working 
world. For any student, the period after graduation is difficult, as he or she learns to live alone, 
handle finances, and make decisions affecting the future. Students with developmental 
disabilities face unique challenges during this transitional period, and often require additional 
services and supports to successfully make the adjustment to the working world. 

In the interest of providing programs that help ease the shift from a school setting into the 
community, the Massachusetts Council on Developmental Disabilities helped to fund the 
Northampton School Department's project "Northampton Opportunities to Work (NOW)." The 
project was designed to provide community supports and normalized activities to 16-22 year old 
individuals with developmental disabilities. In an effort to ease the transition, the program 
reached out to these students before they left the Northampton Public Schools and special 
education services. NOW provided innovative community-based supports to complement and 
reinforce school-based instructional activities. Additionally, business owners and other potential 
employers from the community visited the schools to discuss their expectations as employers. 

In Missouri, the University Center for Excellence in Developmental Disabilities at the 
University of Missouri-Kansas City sponsors a program called Continuing Education for People 
with Developmental Disabilities (ACED). ACED offers adults with developmental disabilities 
the opportunity to attend non-credit classes in an integrated educational and social environment. 
The Missouri Department of Elementary and Secondary Education encouraged the development 
of the project to enhance the high school transition and post-high school educational 
opportunities of people with developmental disabilities. 

Each semester, approximately 150 individuals with developmental disabilities enroll in classes 
ranging from horseback riding lessons to sessions on how to navigate the public bus system. 
Class size is small, with about 12 students per class. The program teaches independent living 
skills and provides life-enhancing experiences. The courses provide students with educational, 
social, and recreational opportunities and help the students become part of the community. 

The University of Montana Rural Institute, Montanas UCEDD, implemented a similar project to 
help make the school-to-work transition successful. The Graduate to Work Project aims to 
increase access to community employment for students with developmental disabilities 
graduating from Montana schools. Piloted in Missoula, Montana, the program was designed to 
be easily replicated by other locales. The project emphasizes individually driven vocational 
planning. The individualized approach better matches students to jobs, increasing job 

The American Dream Belongs to Everyone: A Report to Congress, the President, and the National Council on Disability 

satisfaction and retention while reducing the cost and duration of outside supports. 

2.3 Individuals with developmental disabilities have better quality services and support 
Part of ADDs mission is to promote independence by ensuring that individuals with 
developmental disabilities have access to appropriate, accessible services that allow them to lead 
a full and self-sufficient life as a part of an integrated community. 

Individuals with developmental disabilities need clear and consistent information regarding 
services and supports, as well as access to training and tools to enable them to make informed 
decisions, choose between service providers, and manage various services. 

ADD grantees provide individuals with services that allow them to participate in recreational and 
cultural activities, advocate for their personal rights, and move from institutional settings to 
homes in the community. Grantees constantly work to protect the rights of individuals with 
developmental disabilities and to improve the quality, accessibility, and flexibility of the services 
provided to them. 

ADD encourages programs that rely on the personal knowledge, experience, and voices of 
people with developmental disabilities to shape the standards by which programs are expected to 
operate. 

In an effort to make sure these voices are heard and understood, the Ohio Council on 
Developmental Disabilities (Council) funded My Voice, My Choice, a five-year project that 
was in its fourth year in 2004. The purpose of the grant was to develop a report card that 
would allow individuals with developmental disabilities to grade service providers, thereby 
promoting informed choice for individuals and accountability for service providers. 

This report card, which has been developed and tested in a pilot grogram, gives individuals with 
developmental disabilities a method to voice their opinions regarding their service providers. It 
also allows them to use the comments of others to make informed choices about the services they 
receive. 

The first four years of the project have been dedicated to developing and testing a statistically 
reliable report card that is user-friendly and allows for maximum participation by individuals 
with developmental disabilities and their guardians. Approximately 14,225 people were 
contacted to participate in the project during the first statewide pilot, and 4,905 individuals or 
their guardians were included in the final data pool. 

Quality assurance programs like Ohios My Voice, My Choice project exist to ensure that 
people with developmental disabilities have the facts, skills, opportunities, and supports needed 
in order to live free of abuse, neglect, rights violations, and inappropriate restriction. These 
projects expand the ability for individuals with developmental disabilities to live independent, 
productive lives as a part of an inclusive community. They also promote capacity building and 
system change. Capacity building activities are activities intended to build a system for 
sustaining and expanding the successful delivery of services, support, and other assistance to 

The American Dream Belongs to Everyone: A Report to Congress, the President, and the National Council on Disability 

individuals with developmental disabilities and their families. Systemic change means a 
sustainable transferable and replicable change in some aspect of service or support availability, 
design or delivery that promotes positive or meaningful outcomes for individuals with 
developmental disabilities and their families. These quality assurance activities are mandated by 
law in the Developmental Disabilities Assistance and Bill of Rights Act of 2000, as outlined 
below. 

Section 102(23) of the Developmental Disabilities Assistance and 
Bill of Rights Act of 2000 states that the term quality assurance 
activities: 
means advocacy, capacity building, and systemic change 
activities that result in improved consumer and family-centered 
quality assurance and that result in systems of quality assurance 
and consumer protection that(
A) include monitoring of services, supports, and assistance 
provided to an individual with developmental disabilities that 
ensures that the individual(
i) will not experience abuse, neglect, sexual or financial 
exploitation, or violation of legal or human rights; and 
(ii) will not be subject to the inappropriate use of 
restraints or seclusion; 
(B) include training in leadership, self-advocacy, and self-
determination for individuals with developmental disabilities, 
their families, and their guardians to ensure that those 
individuals(
i) will not experience abuse, neglect, sexual or financial 
exploitation, or violation of legal or human rights; and 
(ii) will not be subject to the inappropriate use of 
restraints or seclusion; or 
(C) include activities related to interagency coordination and 
systems integration that result in improved and enhanced 
services, supports, and other assistance that contribute to and 
protect the self-determination, independence, productivity, and 
integration and inclusion in all facets of community life, of 
individuals with developmental disabilities. 

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Helping individuals with developmental disabilities find the services and supports they need to 
participate fully in the community is an integral part of the quality assurance activities performed 
by ADD grantees. Creating inclusive communities helps build a foundation for acceptance of 
disability as a part of life. Most people with developmental disabilities are capable of leading 
independent lives as productive and valuable members of their communities, although some 
individuals need support and services to do so. 

In the interest of encouraging community integration during all phases of life, the California 
Council on Developmental Disabilities funded the Harmony Project, which partnered 23 senior 
citizens with developmental disabilities with seniors who shared common interests but did not 
have disabilities. Together, the integrated group of seniors participated in culturally sensitive 
inclusive activities at 11 Orange County senior centers. 

The goal of this program, which expects to soon serve 40 senior citizens with developmental 
disabilities, is to provide meaningful community integration to an underserved segment of the 
senior population. By allowing the same flexibility and choice experienced by the general 
population, it offers senior citizens with developmental disabilities a retirement-age-appropriate 
alternative to traditional day programs. Attendance and activities are based on personal interest 
and choice, rather than a rigid programming schedule dictated by the staffing patterns of a 
program or home catering exclusively to individuals with developmental disabilities. 

The first phase of the program was extremely well-received, not only by the participants with 
developmental disabilities, but also by the senior citizens in the general population. In teaching 
the senior citizens without disabilities about people with developmental disabilities, empathy 
training on an individual basis proved to be more successful than formal group presentations. 

Culturally-sensitive, multi-lingual outreach was an important component of the program. ADD 
strongly encourages its grantees to fund programs that reach out to underserved or unserved 
groups, such as minority communities with cultural or language barriers that can restrict access 
to appropriate services. To make sure that they reached out to individuals who did not speak or 
read English well, Harmony Project staff advertised the program through flyers written in 
specific languages, articles in local newspapers published in multiple languages, and outreach 
activities conducted at various cultural festivals. Person-centered planning allowed the program 
to meet the needs of ethnically diverse senior citizens by providing individuals with appropriate 
transportation, flexible schedules, and staff members who spoke the primary language of each 
individual and his or her family. 

Margaret, a senior citizen with developmental disabilities and a participant in the Harmony 
Project, was unknown to the developmental disability service system in California before she 
enrolled in the program. Margaret lives at home with her 96-year-old mother, neither of whom 
previously participated in activities outside of their home. Margaret now chooses to participate 
in social and recreational activities up to four times a week, which fosters a new-found sense of 
inclusion in the community and enhances her quality of life. 

The American Dream Belongs to Everyone: A Report to Congress, the President, and the National Council on Disability 

The following table, like other tables in this report, represents the outcomes of the many projects 
funded and sponsored by ADDs three grant programs. It should be noted that many of these 
programs require longer than one year to begin to yield noticeable results, and therefore statistics 
for fiscal year 2004 may not yet represent the full impact of these programs. 

Council Quality Assurance Activities 

Number of people 
who benefited from 
Council Quality 
Assurance Activities 
FY 2003 FY 2004 
Total 103,275 87,158 
Number of 
Councils 
44 45 

Council Community Support Activities 

Number of people 
who received 
formal/informal 
supports through 
Council efforts 
FY 2003 FY 2004 
Total 58,795 45,436 
Number of 
Councils 
40 38 

Like Margaret, Kate is an adult with developmental disabilities who was able to begin 
participating in her community because of services offered by ADDs partners. Because of 
behavioral issues, Kate used to reside on the campus of a large regional center for individuals 
with developmental disabilities. After some of these behavioral problems were resolved, Kates 
family was eager to begin transition planning so that Kate could reside in a smaller state-run 
group home in the community. The Legal Center, Colorados Protection and Advocacy Agency 
(P&A) became involved in Kates case at the request of her parents. The Legal Centers staff 
helped Kate and her family to understand the details of the transition process and the benefits of 
living in a more integrated setting. 

In order to help Kate succeed in a more self-sufficient environment, the Legal Centers staff 
helped her to secure supplemental services, including a supported employment arrangement. 
Kate initially found the transition into the community-based home to be difficult, but the Legal 
Centers staff persisted in their efforts to help her adjust. Kate now enjoys a more independent 
life in an integrated setting. 

Appropriate services, such as Kates supported employment arrangement, are a crucial step 
towards leveling the playing field so that individuals with developmental disabilities can 
participate in the community without arbitrary restrictions and are able to make the choices that 
determine the courses of their lives. 

The American Dream Belongs to Everyone: A Report to Congress, the President, and the National Council on Disability 

Jamal, a young adult with cerebral palsy, initially contacted the Guam Legal Services Center, 
Guams P&A, because of difficulty obtaining legally-mandated services required under the 
Individuals with Disabilities Education Act (IDEA). The Legal Services Center agreed that the 
Department of Education had failed to provide an appropriate education, and staff members 
successfully represented Jamal in a due process hearing. During the hearing, it became apparent 
that the lack of educational services had also impacted Jamals ability to develop employment 
skills. After successfully obtaining a decision for compensatory education time and a provision 
of appropriate assistive technology, the Legal Services Center further advocated for Jamal, 
helping him to receive training and transition services that allow him to pursue the employment 
of his choice. 

P&A Quality Assurance Statistics 

Number of people who 
obtained or maintained 
quality services and 
supports as result of 
P&A intervention 
FY 2003 FY 2004 
Total 16,955 5,917 
Number 
of P&As 
57 56 

Often, individuals like Jamal have access to services intended to help them, but sometimes the 
services are ineffective. ADD grantees help to improve existing services so that they meet the 
needs of individuals with developmental disabilities. In Jamals case, the educational services 
being provided were inadequate, and the Guam P&A helped to resolve the problem and educate 
the Department of Education about the rights of individuals with developmental disabilities. 
Because of Jamals efforts and P&As assistance, it is likely that the Department of Education 
will improve the way it provides services to individuals with developmental disabilities, thereby 
promoting long-term systemic change. Systemic change means a sustainable transferable and 
replicable change in some aspect of service or support availability, design or delivery that 
promotes positive or meaningful outcomes for individuals with developmental disabilities and 
their families. 

Many other ADD-funded programs are targeting specific services that need improvement and 
working with individuals with developmental disabilities to find out how these services can 
better meet their needs. Through these efforts, individuals are helped in the short-term. In the 
long term, ineffective systems are changed, eliminating a source of problems for future 
generations. Promoting system change is an important part of quality assurance activities 
performed by ADDs partners. 

The Schiefelbusch Institute for Life Span Studies, Kansas University Center for Excellence in 
Developmental Disabilities (UCEDD), is partnering with disability organizations, service 
providers, and state agencies in Kansas to improve personal attendant services and increase 
opportunities for Kansans with disabilities to exercise choice over all aspects of the services they 
receive. This effort focuses on increasing personal care attendant options for people with 

The American Dream Belongs to Everyone: A Report to Congress, the President, and the National Council on Disability 

developmental disabilities who are eligible for the Kansas Medicaid Waiver program and on 
empowering them to personally manage their attendant care services. 

In order for some individuals with developmental disabilities to live and participate fully in their 
communities, personal care attendants must be available in the individuals homes, at work, and 
when they are away from home. The goal of the program is threefold: 

1. 
Address availability issues: Individuals report a lack of availability of qualified 
attendants and a lack of access to consistent information about services. Activities are 
planned to address these issues as well as consumers access to personal care attendants 
regardless of location. 
2. 
Maximize control: Consumers need to have maximum control in exercising choice over 
all aspects of personal assistant services and to have sufficient training to be able to direct 
these services. A pilot program with service providers and consumers served by three 
Community Developmental Disability Organizations (CDDOs) was conducted in order to 
develop an effective model. 
3. 
Create support infrastructure: Individuals with developmental disabilities and/or their 
families/guardians need support in developing and exercising management skills, in 
obtaining and evaluating customer feedback, in using customer feedback to identify and 
correct problems, and in creating a plan for dealing with recurring issues. Data was 
collected regarding these needs, and efforts are underway to improve supports and 
services related to attendant care. 
Delawares UCEDD, The Center for Disability Studies, is helping people with developmental 
disabilities learn to provide important services, not just receive them. By promoting volunteer 
opportunities and other ways to serve the community, the Delaware Service Inclusion Project is 
helping people like Margaret, Kate, and Jamal to take an active role in their community, while 
developing skills that will be useful throughout their lives. The project has worked with state 
and local service organizations such as AmeriCorps, Jaycees, Lions Clubs and other groups to 
encourage the inclusion of people with developmental disabilities in service activities. Some of 
the steps taken by project staff to achieve this goal included: 

Conducting a needs assessment of current service opportunities and the recruitment 
strategies of civic organizations; 
Developing relationships between service projects and disability organizations; 
Providing training to increase service project staffs awareness of disabilities issues; 
Making presentations to individuals with developmental disabilities to increase 
awareness of volunteer opportunities in Delaware; and 
Producing, publishing, and disseminating materials that promote volunteer opportunities 
for Delawareans with disabilities. 
As a result, a large number of individuals with developmental disabilities have become active 
members of various civic organizations. Through involvement in inclusive community service 
organizations, individuals with developmental disabilities play an active role in improving their 
community and promoting causes that are important to them. By working as volunteers, they 

The American Dream Belongs to Everyone: A Report to Congress, the President, and the National Council on Disability 

build confidence, develop leadership and teamwork skills, learn to make the most of the 
resources available, and share ideas, successes, and goals. 

The table below represents UCEDD activities in fiscal years 2003 and 2004. Information was 
tracked differently in fiscal year 2003, and activities in community support refer to projects 
that improved the quality of services and supports available to people with developmental 
disabilities, thereby allowing greater inclusion in the community. 

UCEDD Quality Assurance Statistics 

Number of people reached through 
UCEDDs 
Activities in Quality Assurance 
Number of people reached through 
UCEDDs 
Activities in Community Support 
FY 2004 
62,024 
FY 2003 
99,296 

The American Dream Belongs to Everyone: A Report to Congress, the President, and the National Council on Disability 

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

ADD encourages its grantees to fund programs that aim not just to resolve a specific problem or 
seek justice in a specific case, but to seek long-term solutions through strengthening the human 
service systems and training individuals with developmental disabilities to advocate for 
themselves. 

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 their 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. 

To support these goals, Tennessees University Center for Excellence in Developmental 
Disabilities (UCEDD) sponsored the Self-Determination Project, which teaches self-advocacy 
skills to students with developmental disabilities in high schools, middle schools, and elementary 
schools. Instructors work directly with the students and their support networks to teach 
approaches that promote empowerment, advocacy, and self-direction. The project provides 
opportunities for students to learn about themselves, take a strong role in the Individual 
Education Program (IEP) process, and learn how to best take advantage of resources that will 
lead to employment after graduation. 

In addition to teaching self-advocacy skills that enable individuals to take an active role in 
planning their own lives, ADDs grantees teach them how to use these skills to influence the 
laws and policies that impact all individuals with developmental disabilities. 

Partners in Policymaking is one program that has been particularly successful in teaching self-
advocacy skills nationwide. Partners in Policymaking was created by the Minnesota 
Governor's Council on Developmental Disabilities in 1987. It is an innovative, competency-
based leadership training program for adults with disabilities and parents of young children with 
developmental disabilities. Since 1987, Partners programs have been implemented in 46 states, 
the Northern Mariana Islands, the Netherlands, the U.S. Virgin Islands and the United 
Kingdom. 

Alaska is one of the many states that have found success with Partners in Policymaking. 
Supported by the state Council in cooperation with the UCEDD, the project provides hands-on 
training and technical assistance to help individuals with developmental disabilities and their 
families acquire the necessary skills to effectively advocate for systems change. Additionally, 
the program organizes and facilitates statewide training for community and regional 
development. 

The American Dream Belongs to Everyone: A Report to Congress, the President, and the National Council on Disability 

Projects like Partners in Policymaking are important on several levels. They promote capacity 
building by empowering individuals, organizations, and/or communities to gain the skills they 
need to advocate for individual rights and bring about systemic change. Capacity building 
activities are defined as activities intended to build a system for sustaining and expanding the 
successful delivery of services, support and other assistance to individuals with developmental 
disabilities and their families. Systemic change means a sustainable transferable and replicable 
change in some aspect of service or support availability, design or delivery that promotes 
positive or meaningful outcomes for individuals with developmental disabilities and their 
families. Additionally, these programs help ensure that policies regarding individuals with 
developmental disabilities are shaped by the people they influence the most  the individuals 
themselves and their family members. 

The Hawaii Council on Developmental Disabilities (Council) also funded a Partners in 
Policymaking project. Hawaii operates a Partners in Policymaking Leadership Academy that 
teaches self-advocacy and leadership skills; to date, the training program has been completed by 
149 individuals with developmental disabilities or their family members. Additionally, the 
Council has helped 90 self-advocates and family members from Oahu and the neighbor islands to 
meet with legislators and staff to share their personal stories and express concerns about issues 
that impact the lives of individuals with developmental disabilities. Legislative advocacy 
training was provided to more than 120 individuals with developmental disabilities and their 
families. 

The American Samoa Council on Developmental Disabilities recently helped form a new 
organization to promote self-advocacy. The Center for Families of Developmental Disabilities 
helps families to build community capacity for the delivery of information, training, and support 
to individuals with developmental disabilities and their parents and family members who are 
unserved or underserved, particularly in remote areas. An important part of the Centers work is 
to help parents understand the Individuals with Disabilities Education Act (IDEA) and learn how 
to most effectively advocate for their childrens rights. 

Similarly, West Virginias Council supports The Fair Shake Network, an organization that 
provides self-advocacy training and support for people with disabilities and their families. 
Activities include training and education about the legislative process, civil rights, and other 
important issues. The Fair Shake Network also provides education and technical assistance to 
public officials about issues affecting people with disabilities, such as employment, 
transportation, health care, education, housing and personal assistance services. 

The American Dream Belongs to Everyone: A Report to Congress, the President, and the National Council on Disability 

Council Self-Advocacy Statistics 

41,200 People attained 
membership on public and 
private bodies and other 
leadership coalitions 
1,851 People trained in 
systems advocacy about 
quality assurance 
33,874 People active in systems 
advocacy about quality 
assurance 
36,569 People trained in 
leadership, self-advocacy, and 
self-determination 
Equip for Equality, the P&A in Illinois, has created the Latino Outreach and Advocacy Project 
as a means to teach self-advocacy skills to an underserved population. The project has 
significantly improved the service delivery system for Latinos with developmental disabilities. 
The community is receiving better access to legal advocacy services and training, which are 
being delivered in a more culturally sensitive manner. The P&As work, especially on 
educational services, has been particularly critical in the wake of the closing of the National 
Center for Latinos with Disabilities. The P&A staff has also been assisting Latino parent groups 
to establish themselves as viable non-profit organizations, thereby improving the capacity of the 
Latino community to independently advocate for themselves and their families. 

Like education, employment is important because it provides a foundation of competency and 
self-sufficiency upon which an individual can build for the rest of his or her life. Individuals 
with developmental disabilities have the right to pursue the careers of their choice free from 
discrimination. P&As often work to educate individuals with disabilities about their legal rights 
concerning employment and help take appropriate actions if these rights are violated. 

The Arizona Center for Disability Law, Arizonas P&A, has developed the ADA Employment 
and Vocational Rehabilitation Rights Legal Advice Line. The advice line promotes knowledge 
of state and federal law protecting people on the basis of disability, including the Americans with 
Disabilities Act. Attorneys staffing the ADA Employment Line advise individuals with 
developmental disabilities, as well as their families and job coaches, about advocating for people 
with disabilities. The Employment Line operates three hours a day, four days a week, and 
provides a valuable and accessible source of information. 

The American Dream Belongs to Everyone: A Report to Congress, the President, and the National Council on Disability 

2.5 Individuals with Developmental Disabilities have their complaints of abuse, neglect, 
discrimination, or other human or civil rights violations corrected 
All people  both individuals with disabilities and members of the general population  have 
the right to lives free of abuse, neglect, exploitation, and rights violations. ADD supports 
programs that seek to eliminate discrimination based on disability and to ensure that all 
individuals with developmental disabilities have access to the supports necessary to make their 
voices heard and have their complaints of abuse, neglect, discrimination, and other illegal 
practices investigated and appropriately addressed. 

Grantees also provide legal support when rights in these areas are violated, thereby helping 
individuals on a case-by-case basis as well as working to create systemic change and foster an 
environment wherein these discriminatory practices are a thing of the past. Systemic change 
means a sustainable transferable and replicable change in some aspect of service or support 
availability, design or delivery that promotes positive or meaningful outcomes for individuals 
with developmental disabilities and their families. 

Protection and Advocacy Agencies (P&As) are charged with investigating and addressing 
instances of abuse, neglect, and discrimination. State Councils on Developmental Disabilities 
(Councils) and University Centers for Excellence in Developmental Disabilities (UCEDDs) are 
not directly involved in legal activities related to these issue areas. However, both the Councils 
and the UCEDDs empower individuals with developmental disabilities to be less vulnerable to 
abuse, neglect, and discrimination through training and educational activities that allow 
individuals to protect their rights, increase their safety and personal welfare, and maintain their 
personal authority. 

In fiscal years 2003 and 2004, several Councils undertook projects to educate people with 
developmental disabilities and their families and caregivers about discrimination, abuse, and 
neglect and to help individuals to understand and protect their rights, often by training them to be 
effective self-advocates. 

Maines Council provided financial and other types of support to Speaking Up for Us 
(SUFU), the states self-advocacy organization for individuals with developmental 
disabilities. Local SUFU groups met regularly and members learned from each other 
about protecting themselves from abuse and taking care of their health, among other 
issues. 
In California, more than 2,600 individuals with developmental disabilities, family 
members, providers, and professionals have received personal health and safety training 
designed to minimize the risk of abuse and keep individuals with disabilities safe. 
Through Council projects in Northern and Southern California training was provided on 
topics such as Providing Personal Care Safely and with Dignity, Personal Care 
Protocols, Respecting Yourself, Personal Safety and Healthy Relationships, and 
other topics designed to improve the ability of individuals with disabilities to live free 
from abuse or neglect. 

The American Dream Belongs to Everyone: A Report to Congress, the President, and the National Council on Disability 

The Colorado Council worked with a legislative representative to stop a bill that would 
reduce protections and recourse for children in residential facilities who experienced 
abuse or neglect. 
Like the Councils, UCEDDs educate individuals with disabilities, their families, their caregivers, 
and other community stakeholders about the rights of people with disabilities and methods for 
the prevention of abuse and neglect. 

In North Dakota, the Center for Persons with Disabilities (NDCPD), the states UCEDD, is 
working directly with service providers to ensure that caregivers for individuals with 
developmental disabilities are properly trained in order to minimize the potential for instances of 
abuse and neglect. 

Together with an independent contractor, NDCPD created an online course for caregivers. The 
course focuses on strategies for preventing abuse and neglect, and participants learn how to: 

Recognize risk factors for staff as perpetrators and individuals as potential victims; 
Develop coping skills for staff members in challenging situations; 
Identify corporate and environmental supports that foster positive relationships; 
Implement positive practices that decrease the likelihood of mistreatment; and 
Recognize and report the occurrence of mistreatment. 
While many people who work in the disability service community may benefit from this course, 
it is written specifically to meet the needs of the direct support staff who have contact with 
people with disabilities on a regular basis. 

In North Carolina, psychologists are providing training to individuals who work with children 
with developmental disabilities who have been the victims of abuse. The Clinical Center for the 
Study of Development and Learning (CDL) at the University of North Carolina at Chapel Hill is 
North Carolinas UCEDD. CDL psychologists provide regular training and consultation to 
offices of the North Carolina Mentor Network, which provides direct service to children and 
adults with developmental disabilities, many of whom have been the victims of severe abuse. 
The staff also provides continuing education to therapeutic foster parents and other direct service 
providers. The benefits of this approach are a better trained workforce and greater support for 
innovative service. 

In Wyoming, efforts are being made to help individuals with developmental disabilities who 
have been the victims of a crime. Being a crime victim is a terrifying experience for anyone, but 
for individuals with disabilities, the trauma of the crime is often compounded by the fact that 
there are no available resources to help them process the event and seek closure. In a joint 
venture with the U.S. Department of Justices Office for Victims of Crime and the Association of 
University Centers for Excellence in Developmental Disabilities, the Wyoming Institute for 
Disabilities (UCEDD) is taking steps to help people with developmental disabilities who become 
victims of crime. 

The American Dream Belongs to Everyone: A Report to Congress, the President, and the National Council on Disability 

The project has led to the creation of the Victims of Crime with Disabilities Resource Guide, 
which provides an online, searchable database of training, technical assistance, and general 
informational resources focusing on victims of crime with disabilities. The web site has several 
hundred entries including books, videos, training programs, and training products all geared 
towards the disability and victim assistance fields. 

All of these projects lead to the empowerment of individuals with developmental disabilities, 
their friends and families, and the people who provide their care. While P&As do provide 
education about the rights of individuals with developmental disabilities, they also provide direct 
advocacy and support if these rights are violated. 

In New Jersey, the state P&A was consulted because of several falls experienced by Peter, 
who has developmental disabilities, is blind, and resides in a state developmental center. Peter 
sometimes engages in self-injurious behavior, and a report by the developmental center stated 
that Peter had fallen in the bathroom and sustained a head wound requiring closure with staples. 
His sister contacted the P&A because of concerns that his safety was being neglected. Peters 
family requested a special Interdisciplinary Team meeting, and a plan was developed to enhance 
Peters safety through staff education and modifications to his environment. In addition, Peters 
psychiatrist provided new medication to reduce Peters self-injurious behavior. After the 
changes had been implemented, P&A staff visited Peter to monitor his condition. Peter and his 
family are pleased with his progress and with the developmental center staffs attentiveness to 
his needs. 

The Alabama P&A intervened to investigate allegations of abuse after Frank, an adult with 
developmental disabilities, was discharged from a large developmental center and placed in a 
smaller group home in the community. Frank was attending a day program that was separate 
from his residential program, and both his guardian and the day program staff were concerned 
that Franks needs were not being adequately addressed by his residential programs staff. 
There were allegations of rights violations, abuse, and neglect. The P&A visited Frank at his 
residence and identified a number of concerns, including inability to exercise religious beliefs, 
unreliable transportation, inadequate staff training/education, lack of adequate food, and 
inadequate opportunities for community integration. The P&A sent a memo to the Regional 
Mental Retardation Services Office outlining the identified concerns. P&A staff then worked 
with various regional and state services offices to successfully remedy concerns identified at 
Franks residential program. Frank and his family are now happy with his living situation and 
with the quality of the care he receives. 

In addition to the investigation of concerns related to the safety and well-being of people like 
Peter and Frank, P&As investigate potential discriminatory practices and work with involved 
parties to find appropriate solutions. 

As discussed earlier in this report, one of the most important rights of any individual in this 
country is the right to a free, appropriate education. Having access to education sets the stage for 
success at every phase of life. It opens doors and broadens prospects for the future. ADDs 
grantees sponsor a number of programs to promote inclusive education practices, but 
occasionally, intervention is necessary in individual cases to address discriminatory practices. 

The American Dream Belongs to Everyone: A Report to Congress, the President, and the National Council on Disability 

Through correcting individual instances of discrimination, P&As educate school districts about 
the legal ramifications of such practices, and help to foster long-term system change. 

Miguel, a child with developmental disabilities living in Maryland, was not 
being provided with appropriate educational services by his school district. His rights, as 
outlined under the Individuals with Disabilities Education Act (IDEA), were being violated. The 
school district refused to accept the diagnosis of Autism/Aspergers Syndrome, refused to 
provide the necessary special education supports and accommodations required by IDEA, 
illegally placed Miguel in a home teaching program, and attempted to place him in a program for 
children with emotional disturbances. The P&A filed a complaint with the Maryland State 
Department of Education on Miguels behalf. It was found that the school district had violated 
Miguels educational rights and owed him compensatory educational services. A new 
Individualized Education Program (IEP) was developed for Miguel, and he was placed in an 
appropriate program that meets his needs. 

In Rhode Island, the parents of Pablo, an 8-year-old boy with developmental disabilities, 
contacted their states P&A because Pablos school was refusing the one hour of inclusion 
required in Pablos IEP. In the prior year, Pablo had one hour of inclusion, but the school district 
stated that time in an inclusive setting was going to be decreased due to behavioral problems. 
Pablos parents wanted his level of inclusion to be increased, not decreased. Also, due to 
behavior issues, Pablo was not allowed to go on a school field trip. The P&A represented Pablo 
at an IEP meeting, and due to staff efforts, Pablo was able to maintain his current hour of 
inclusion, with quarterly reviews scheduled to increase inclusion time. The P&A also helped to 
develop a behavior plan and educate the school department on disability-related behavior. The 
P&A advised the school that failure to include the client in field trips was discriminatory and 
illegal. 

Complaints of abuse, 
neglect, discrimination, 
or rights violation were 
investigated 
FY 2003 FY 2004 
Total 57 56 
# of P&As 10,056 9,939 

The American Dream Belongs to Everyone: A Report to Congress, the President, and the National Council on Disability 

Chapter 3: Accountability 

The Administration on Developmental Disabilities (ADD) uses Monitoring and Technical 
Assistance Review System (MTARS) site visits to evaluate three of its grant programs: 

1. 
State Developmental Disabilities Councils (Councils); 
2. 
State Protection and Advocacy Systems (P&As); and 
3. 
University Centers for Excellence in Developmental Disabilities Education, Research and 
Services (University Centers, UCEDDs). 
MTARS benefits ADD, the States experiencing an MTARS review, and all ADD grantees 
nationwide. ADD relies on MTARS as a significant component of its Federal stewardship 
and uses the information obtained from MTARS reviews to strengthen its position when 
justifying its programs to Federal oversight agencies. States learn how to become even 
more effective, and all grantees gain through the sharing of innovative practices that are 
highlighted through the MTARS process. 

The MTARS process provides opportunities for consumers and program peers to participate with 
Federal program officials in their review and assessment of the Council, P&A and UCEDD 
grantees within a State. The MTARS process focuses on a grantees: 

Program compliance with the DD Act; 
Organizational structure for effective implementation of the DD Act; 
Accountability and achievement of program goals; 
Collaboration with other ADD programs within the State; 
Technical assistance needs; and 
Innovative practices. 
In 2004 MTARS evolved from primarily focusing on grantee compliance with the law to the 
multi-element approach bulleted above. The traditional compliance model did little to promote 
collaboration among grantees in a State, a theme emphasized in the DD Act. Moreover, 
throughout the Federal Government, there is increased emphasis on accountability and on 
justifying programs and budgets by showing their positive impact on people. It is no longer 
sufficient only to describe procedures or processes. This new Federal climate is an opportunity 
to bring more attention to the collaboration among a States DD network grantees, to the effect 
they have in the State on issues affecting people with developmental disabilities and to the 
benefits of technical assistance that fosters partnerships, promotes collaboration, and encourages 
program compliance and effectiveness. 

During an MTARS evaluation, grantees are asked to demonstrate compliance with the law by 
documenting how they meet requirements regarding such areas as governance, authority and 
independence, monitoring and evaluation, reporting and recordkeeping, and fiscal management. 
They are also asked to demonstrate accountability with information regarding progress on 
achieving goals, activities and outcomes tied to goals, resources targeted on goals, processes to 
verify and validate program outcome data, costs associated with goals and evidence of consumer 
satisfaction. Finally, they are asked to provide evidence of collaboration within the DD network. 
This includes information on the number of projects that include substantive joint efforts with 

The American Dream Belongs to Everyone: A Report to Congress, the President, and the National Council on Disability 

other ADD grantees in the state, the extent of collaboration within a given project, the areas 
addressed by these joint efforts, and the impact of collaboration on project outcomes. 

Technical assistance to ADD grantees is not limited to the needs that arise during an MTARS 
review. ADD, through its technical assistance contracts and other resources is ready to help 
grantees at any time to remedy issues and address areas where help is needed to yield better 
outcomes. Because MTARS is comprehensive in scope, intensive, involves follow-up activities, 
and has many opportunities for dialogue with ADD staff, peers, and consumers, it is 
advantageous for grantees to disclose areas where they would like to improve so that technical 
assistance resources can be activated early in the MTARS process. 

The MTARS is one vehicle ADD uses to identify best practices that can be added to the 
strategies used by other grantees to do an even better job. ADD is proud of all the good work 
that grantees do each day to better the lives of individuals with developmental disabilities and 
seeks innovative practices to recognize, promote, and disseminate throughout the nation. 

The outcomes of the MTARS in 2004 revealed a number of strengths, some weaknesses, and 
some innovative practices. In one State, the recent structural and leadership changes were found 
to strengthen the organizations. The strong collaboration within one State with regard to joint 
needs assessment and development of goals and priorities laid a strong foundation to fulfill 
recommendations to build collaboration in other areas. One review identified the need for 
increased outreach across a State and for parent leadership training programs. One review 
revealed a number of strengths in a university based program, including the scope and quality of 
the research and clinical services; the resources made available at the local, state and national 
levels; the efficacy of training in terms of student outcomes; the quality and commitment of 
faculty and staff; and the breadth of effective collaboration across State agencies and 
organizations. An innovative practice in one States attempt to enhance the independence of 
people with impairments caused by brain injuries or autism was teaching them to use personal 
digital assistants (PDAs) to remember to perform daily activities. These MTARS visits 
supported ADDs stewardship role, gave assistance to grantees to improve their programs, and 
shared worthwhile ideas throughout the grantee network. 

MTARS Review Recipients in Fiscal Years 2003 and 2004 

Region 2003 2004 
I MA 
II 
III VA 
IV AL 
V WI 
VI TX AR 
VII KS, NE 
VIII CO, UT 
IX 
X 

The American Dream Belongs to Everyone: A Report to Congress, the President, and the National Council on Disability 

Chapter 4: Projects of National Significance 

An individual with a developmental disability acquires the disability before the age of 22 and 
often faces the need for a wide range of services and supports in order to engage in activities of 
daily living. The right combination of services and supports helps individuals with 
developmental disabilities and their families stay together, participating in the full range of 
community life. 

To help ensure that those services best meet the needs of people with developmental disabilities, 
ADD funds Projects of National Significance (PNS), which are short-term projects that provide 
ADD with the opportunity to work on targeted issues that are important to the developmental 
disabilities community. 

These projects focus on the most pressing issues affecting people with developmental disabilities 
and their families. Project issues transcend the borders of States and Territories, while project 
designs are oriented to permit local implementation of practical solutions. Over the years, PNS 
funds have supported families and caregivers, increased community living options, promoted 
inclusive education, developed quality assurance standards, explored avenues to promote self-
determination, assisted with family leadership development, and increased opportunities for self-
advocates to be involved in system change initiatives. Examples of PNS projects in fiscal years 
2003 and 2004 include youth center grants and family support projects. 

Youth Information, Training, and Resource Centers Grant. 

In fiscal year 2004, 15 organizations across the country were awarded three-year grants to 
undertake projects which enable them to design information, resource, and training centers for 
youth (13  17 years old) and emerging leaders (18  30 years old) with developmental 
disabilities. Grants were awarded to organizations in California, Delaware, District of 
Columbia, Iowa, Illinois, Maryland, Minnesota, New Mexico, North Carolina, Oklahoma, 
Oregon, and Washington. Centers will help youth and individuals with developmental 
disabilities on national and local levels. 

Three of the grantees are working to become national resource centers, expanding their existing 
national networks. All of the grantees plan to serve youth with developmental disabilities and 
emerging leaders in unserved and underserved communities. Each grantee was awarded up to 
$100,000 annually for three years from ADD to support their model youth center. 

On-going Data Collection and Information Dissemination 

Under Projects of National Significance, ADD has funded a nationwide study of public financial 
commitments and programmatic trends in developmental disabilities services and supports. The 
Project is a "benchmarking" study of states performance as they work to implement President 
Bushs New Freedom Initiative and the U.S. Supreme Courts Olmstead decision, both of which 
promote community living and greater independence. 

The American Dream Belongs to Everyone: A Report to Congress, the President, and the National Council on Disability 

The Project will: 

Analyze developmental disabilities financial and programmatic trends in each state and 
the District of Columbia; 
Identify trends and innovations in the financing of family support, supported living, and 
supported employment; 
Complete a special study of Medicaid spending for special education; and 
Conduct in-depth analyses of developmental disabilities services and supports in 
individual states, including a special study of family support in California in 
collaboration with the University of California. 
Family Support 360 

While many service programs are available in this country, human service systems often fail to 
meet the diverse needs of an individual with developmental disabilities and his or her family. A 
family may need several services and many human service systems address primarily one need, 
such as health, education, or employment. These systems usually focus on one individual, not 
the person and his or her family. 

Funded under Projects of National Significance, Family Support 360 projects help not only the 
individual with disabilities, but also his or her entire family. These families often need 
assistance securing services and help when a service is not available, not coordinated with other 
services, or is not delivering what the family needs. 

Family Support 360: 
Is in-step with President Bushs New Freedom Initiative; 

Empowers and strengthens families; 
Increases responsiveness to the needs of individuals and families; 
Promotes more public-private partnerships to assist people; 
Encourages wiser spending of money; and 
Reduces duplication of effort. 
Family Support 360 grants are funded through Title I, Subtitle E, Projects of National 
Significance (42 USC 15081 through 15083), of the Developmental Disabilities Assistance and 
Bill of Rights Act of 2000 (42 USC 15000 et seq.) (DD Act). In fiscal year 2003 ADD gave 31 
planning grants to help states design a one-stop center to meet the many needs of individuals 
with disabilities and their families. In fiscal year 2004, ADD awarded nine additional planning 
grants, as well as 21 implementation grants to help states meet the goals set in the planning stage. 
These projects are working with diverse human service agencies and public and private groups to 
help families. 

The goal of every one-stop is to assist a family to stay together as a family and thrive. Each 
implementation grant is to provide family support to 50 families of individuals with 
developmental disabilities through a one-stop. The families helped are to be members of 

The American Dream Belongs to Everyone: A Report to Congress, the President, and the National Council on Disability 

unserved or underserved populations. Through the one-stop a family will have a family 
assessment and participate in the development of its individual family plan. The plan is to 
include the services and supports (e.g., health and/or mental health care, housing, counseling 
and/or marriage education, parenting skills development, child care, employment, transportation, 
respite care, personal assistance care, financial assistance and/or management) the family needs 
that may be provided by public human service agencies and/or private community- and faith-
based groups. Services and supports are for any family member as needed, not just the member 
with a developmental disability. As a familys plan is implemented, if the family encounters a 
problem, it is to have access to assistance from a navigator employed by the one-stop, who is to 
help resolve the problem. 

In order to be a Family Support 360 implementation grantee, an applicant had to be designated as 
the recipient by the governor in the application. In addition, the applicant had to involve a local 
elected official or his or her designee and agree to work with other grantees of ADD in the state 
in the operation of the one stop. The other state grantees include the State Developmental 
Disabilities Council, the State Protection and Advocacy Agency, and the University Center(s) for 
Excellence in Developmental Disabilities. 

Grant funds are used for operating the one-stops. Other federal, state, and local funding streams, 
as well as support from faith-based and community organizations, cover services and supports 
included in the plans of eligible families. 

Each of the Family Support 360 implementation grantees was one of 31 grantees that received a 
Family Support 360 one-year planning grant of $100,000 in 2003, awarded on a competitive 
basis. In 2004, these 31 grantees competed with each other again for implementation grants 
($250,000 per year for five years), and ADD was able to award implementation grants to 21 of 
the grantees. In 2004 ADD also funded another round of one-year planning grants at $100,000 
each. 

Grantees and their public and private partners have the opportunity to: 
Focus on families in depth; 

Develop the capacity to work with many systems; 
Become more culturally aware; and 
Take the time to learn from families what really works for them. 
These grants: 
Support the emergence of new leaders in delivery of human services; 

Achieve greater credibility with customers; 
Generate greater buy-in and impact on communities; 
Demonstrate new models that others want to replicate for reaching and serving people; 
Increase public and private partnerships, fostering trust and collaboration efforts; 
Provide families the services and supports they need, when they need it; and 
Show policy makers and administrators something that works. 

The American Dream Belongs to Everyone: A Report to Congress, the President, and the National Council on Disability 

Distribution of Family Support 360 Grants to States and Territories 

Name of State/Territory FY 2003 Planning Grant FY 2004 Implementation Grant FY 2004 Planning Grant 
Alabama Yes 
Alaska Yes Yes 
American Samoa 
Arizona 
Arkansas 
California 
Colorado Yes Yes 
Connecticut Yes 
Delaware Yes 
District of Columbia Yes Yes 
Florida Yes 
Georgia Yes 
Guam 
Hawaii Yes Yes 
Idaho Yes Yes 
Illinois Yes 
Indiana 
Iowa Yes 
Kansas 
Kentucky Yes 
Louisiana 
Maine 
Maryland Yes Yes 
Massachusetts Yes Yes 
Michigan Yes Yes 
Minnesota Yes Yes 
Mississippi Yes 
Missouri Yes Yes 
Montana 
Nebraska 
Nevada Yes 
New Hampshire Yes Yes 
New Jersey Yes 
New Mexico Yes Yes 
New York 
North Carolina Yes Yes 
North Dakota Yes 
Northern Mariana Islands Yes Yes 
Ohio Yes 
Oklahoma Yes Yes 
Oregon Yes Yes 
Pennsylvania 
Puerto Rico Yes 
Rhode Island Yes Yes 
South Carolina 
South Dakota Yes Yes 
Tennessee Yes 
Texas 
Utah Yes Yes 
Vermont Yes Yes 
Virgin Islands Yes 
Virginia Yes 
Washington Yes 
West Virginia 
Wisconsin Yes Yes 
Wyoming Yes 
Totals 31 21 9 

50

The American Dream Belongs to Everyone: A Report to Congress, the President, and the National Council on Disability 

Chapter 5: DD Network Collaborative Projects, Activities, and Progress 

As discussed earlier in this report, ADD manages several grant programs three of which are: 
State Councils on Developmental Disabilities (Councils), University Centers for Excellence in 
Developmental Disabilities (UCEDDs), and Protection and Advocacy Agencies (P&As). 

Collaboration among all three ADD grantees in a State or Territory (the DD Network) is crucial 
in order to maximize the impact these programs have on the lives of people with developmental 
disabilities. Through collaboration, the partners bring their unique role and capabilities to the 
table and coordinate their resources to achieve common goals and bring about systems change. 

In addition to collaboration among sister DD entities, ADD grantees and DD networks also 
cooperate with other local, state, and national organizations to maximize their ability to provide 
the best services possible. 

In its purest form, collaboration encompasses interdependent systems and a shared vision. 
Partners make decisions jointly and initiate strategic planning to identify shared goals, outcomes, 
and resources. 

There are several steps, or phases, that help States and Territories move towards full 
collaboration. 

1. 
Contribution: States and Territories make progress towards full collaboration when 
each grantee contributes to and affects what the other grantees are doing -- exchanging 
ideas, providing input, responding to input received, and supporting each other's efforts. 
2. 
Coordination: Next, grantees compare needs, share the workload to achieve outcomes, 
pool resources, and sponsor joint activities. 
3. 
Cooperation: This involves an awareness of other programs, missions, limitations, and 
challenges; a willingness to assume complementary roles, eliminate redundancy, and 
adopt joint goals; and the ability to recognize, accept, and use the strengths and needs of 
partners, to do more than we could do alone. 
The following are examples of collaborative projects that took place during fiscal years 2003 and 
2004. 

In Colorado the P&A spearheaded what resulted in a collaborative strategic planning effort 
across the three programs to move people who were in an institutional setting into the 
community. In 1997, there were 160 residents at the Grand Junction Regional Center, and the 
network wanted to reduce this number by moving people into the community. The network 
collaboratively decided to co-sponsor a two-day planning retreat to bring together various 
representatives from the community at which time they developed a unified effort with the 
following goal: 

The American Dream Belongs to Everyone: A Report to Congress, the President, and the National Council on Disability 

To reduce the number of people with developmental disabilities living on the Grand Junction 
campus to zero, but with the condition that every person who moves off campus wants to move 
to the community is safe and is receiving appropriate, good quality service in the community. 

The P&A, the Council, and the UCEDD agreed to accept responsibility for the initiative and to 
form a steering group to move the strategic planning effort forward. 

By 2004, there remained just over 60 residents at the Grand Junction Regional Center. Although 
the network fell short of their intended goal of zero residents, they felt much progress had been 
achieved through the collaborative effort. Evaluative information from the effort supports this 
perspective. Survey responses measuring participants satisfaction with the initiative indicated 
overall satisfaction with how the move was planned and how community services were being 
provided. 

In Virginia the developmental disabilities network has developed a successful collaborative 
working relationship. This working relationship enables the network to address both statewide 
and national issues relating to developmental disabilities. The executive directors of the Council, 
P&A, and UCEDD maintain effective and consistent communication. They have one regularly 
scheduled meeting a month, but are in frequent contact to discuss projects and current 
happenings in the state. 

Each of the three grantees provides input into the planning process of the other grantees, 
contributes to the other grantees newsletters, and has representatives on the other grantees 
boards of directors. They jointly participate in activities to improve special education 
experiences, to train professionals to prevent maltreatment of individuals with disabilities, and to 
address community living issues inherent in the Olmstead decision. All three programs 
participate in Partners in Policymaking. The Council and P&A work together on the Youth 
Leadership Forum and the Council and UCEDD are sponsors of New Voices, an initiative to 
provide self-advocacy and other system change opportunities to people with developmental 
disabilities who have been isolated and have not previously participated in such activities. 

In Idaho the Council convened a task force to examine supported living in the State. Both P&A 
and UCEDD were represented on that task force. The task force also served in an advisory 
capacity to a contract funded by the Council to conduct research on how to amend two Home 
and Community Based Services waivers for persons with developmental disabilities to 
encourage the use of supported living. A report was released in June and is being used, in part, 
to assist with the development of the self-determination waiver. Recommendations from the 
report have also been incorporated into changes in billing procedures for supported living 
services statewide. A copy of the report was also provided to Region X Centers for Medicare 
and Medicaid Services during their Idaho site visit. 

The three network components in Mississippi are involved in an initiative entitled Justice for 
All that is designed to support individuals with developmental disabilities and people with 
disabilities who are victims of crime. The Council funds the initiative with the UCEDD. All 

The American Dream Belongs to Everyone: A Report to Congress, the President, and the National Council on Disability 

three serve on a Youth Leadership initiative through a local private/non-profit organization 
entitled Coalition for Citizens with Disabilities. 

The Alabama DD Network partners collaborated on the Meet Your Neighbor (MYN) project. 
The UCEDD served as the lead agency, while the Council provided funds for that project. Both 
the Council and P&A served on the committee and supported the UCEDD during that project. 
The project resulted in a video and an informational packet to make the community aware of 
what individuals with disabilities can do and how they can be a productive part of a community. 

In New Jersey, the Elizabeth M. Boggs Center on Developmental Disabilities, the Protection and 
Advocacy Agency, and the Council on Developmental Disabilities, together with other partners, 
collaborated to create a conference, The Latino Community and Disabilities; Confronting the 
Barriers. The conference, held on September 17 -18, 2004, focused on building awareness and 
strategies for disability service providers to serve Latino communities and helping community 
and faith-based organizations to identify and support the needs of children and adults in their 
communities. 

Each year in Arkansas, the Arkansas Governors Developmental Disabilities Council plans a 
state conference attended by people with disabilities and their family members, direct support 
professionals and service providers. The conference is designed to further the cause of 
individuals with developmental disabilities. Over the 14-year history of the conference, 
attendance has grown from 150 to approximately 800 individuals. The 2004 conference was 
entitled: KEYS to COMMUNITY - Unlocking the Door to Independence for People with 
Disabilities. As with previous conferences the Disability Rights Center (P&A) and Partners for 
Inclusive Communities (UCEDD) collaborated in the planning of the conference and conducted 
various workshops. The 2004 conference was held September 16  17, 2004, in Hot Springs, 
Arkansas. The Arkansas network partners are also involved in the needs assessments meeting 
which takes place in the State prior to development of the Five-Year State Plan and annual state 
plan modifications. They generally hold between three and six public forums/local meetings 
each year. 

The Wisconsin Council on Developmental Disabilities, the Waisman Center UCEDD and the 
Wisconsin Coalition for Advocacy (WCA) work together as a DD network on many activities. 
Examples of how they coordinate include joint public hearings, regular joint meetings of 
executive directors, participation in one anothers boards and committees, work groups with 
members across the network, and shared funding and resources. The Wisconsin ADD network 
has a longstanding involvement with the Survival Coalition, a community-wide initiative, and 
DAWN, a grass roots self-advocacy coalition, in which the Council has taken the lead in 
supporting activities. In addition, the UCEDD assumed the lead role in the Health Disparities 
Initiative, for which they coordinated planning for a conference, solicited state-wide input, and 
drafted a summary document. The WCA has the lead role for the networks special education 
initiatives, advocacy and litigation. 

The Council, the P&A and the University Center in Louisiana cooperated with one another to 
initiate and advocate for legislation to create the states official Olmstead planning group and all 
three agencies continue to work together in the Olmstead planning process. The Council is 

The American Dream Belongs to Everyone: A Report to Congress, the President, and the National Council on Disability 

assisting in a project of the states University Center to develop an introductory curriculum for 
Direct Support Professionals (DSPs) and recommendations for creating a comprehensive system 
of educational opportunities and career advancement for DSPs. 

The DD network in Arizona identified students, family members, and educators as having a lack 
of knowledge about appropriate transition services. To rectify the situation the network agencies 
took a threefold approach. The network provides training and support to students, family 
members, and educators to facilitate self-determination and successful transition outcomes. 
Additionally, the network is making plans to initiate a public awareness campaign in order to 
educate the general public on the community integration of individuals with developmental 
disabilities. Finally, the Arizona network has identified a lack of qualified related service 
personnel as a result of the job requirements and the prospective compensation and plans to 
identify barriers and implement systems change activities. 

The Utah P&A, the Disability Law Center (DLC), performed an annual needs assessments 
focused on how best to serve the rural population. They found that people wanted to be taught 
self-advocacy skills, especially around physical access issues and education. The DD Network 
has decided to address this systemic issue collaboratively. The Council and P&A hired a shared 
staff person to assist with outreach, education and training. The UCEDD worked with the staff 
person to provide the training. A space was donated by a mental health service provider in the 
community. This office serves southern Utah and is closely located to the two state operated 
facilities. 

The state of Nebraska implemented a Statewide Telehealth Network to create an opportunity for 
all hospitals and public health departments to connect, providing services including video 
conferencing for patient consultations, provider and public education, administrative meeting 
capabilities, emergency alert follow up capabilities, and data transmission. The Telehealth 
system is capable of linking all acute care hospitals and affords an opportunity for secure two-
way interactions. The Nebraska UCEDD provided telehealth services as a joint venture between 
the Munroe-Meyers Institute and the Nebraska Departments of Health and Human Services and 
Education. The joint project provides a comprehensive link between providers at the Munroe-
Meyer Institute and community providers for children with special health care needs and 
developmental disabilities. The network increases access to specialty services throughout 
Nebraska, offering enhanced health care options to rural communities. 

The American Dream Belongs to Everyone: A Report to Congress, the President, and the National Council on Disability 

Chapter 6: Technical Assistance and Interagency Activities 

Technical Assistance 

The Administration on Developmental Disabilities (ADD) uses technical assistance (TA) to help 
meet agency goals and to advance the mission of ADD. ADD endorses the use of technical 
assistance for grantees when they have a need that they cannot address independently or if the 
population's needs cross program or State lines. Technical assistance can take many different 
forms. TA contractors are called on to help build capacity for greater service, provide training to 
personnel, improve interagency communication, facilitate cross-agency collaboration, streamline 
administrative processes, collect information, implement technology advances, and provide 
expert advice in a wide range of areas. The targeted result of technical assistance is a greater 
ability for ADD and its grantees to meet ongoing needs and sustain progress. 

In fiscal years 2003 and 2004, ADD funded several contracts that provided technical assistance 
and/or training to grantees, and to ADD as a whole, including the following: 

National Association of Councils on Developmental Disabilities (NACDD); 
National Association of Protection and Advocacy Systems/Training and Advocacy 
Support Center (NAPAS/TASC); 
Association of University Centers on Disabilities (AUCD); 
Disability Advocacy Training and Technical Assistance (DAT2A); and 
Z-Tech Corporation  Online Data Collection (OLDC), Information Dissemination. 
Other sources of technical assistance that may be arranged directly by ADD grantees include the 
following: 

Peer developmental disabilities program consultation and assistance; 
National organizations and foundations; 
Private providers and agencies; and 
National experts. 
Technical Assistance to State Councils on Developmental Disabilities 

An ADD Technical Assistance contract through the National Association of Councils on 
Developmental Disabilities (NACDD) encouraged and supported individuals with developmental 
disabilities and family members to attend and speak at an annual conference in Washington, DC. 
The Developmental Disabilities Assistance and Bill of Rights Act of 2000 (DD Act) requires that 
individuals with developmental disabilities and their families participate in the design of 
community services, supports, and assistance that promote self-determination, independence, 
productivity, and integration and inclusion in all facets of community life. ADD supports 
consumers and families attending the annual TA Institute to benefit from their leadership and 
networking abilities and to foster skills development. Through the TA contract, NACDD has 
provided significant assistance to State Councils on Developmental Disabilities on Olmstead and 
the New Freedom Initiative. Information on the Olmstead Decision can be found in 
Chapter 7: New Freedom Initiative Activities. Additional information on the New Freedom 
Initiative can be found in the Chapter 1: An Introduction to ADD, and in Chapter 2: 
Challenges and Opportunities. 

The American Dream Belongs to Everyone: A Report to Congress, the President, and the National Council on Disability 

NACDD technical assistance helped to move individuals out of institutions and increased home 
and community based services and supports. TA also helped increase the number of direct 
support staff available to provide assistance for individuals with disabilities ensuring or 
increasing the stability of their independent living arrangement. NACDD facilitated conference 
calls on the topics and generated resources and reports from literature reviews. 

Technical Assistance to Protection and Advocacy Agencies 

The Training and Advocacy Support Center (TASC) provided training and technical assistance 
to help P&A staff enhance their ability to effectively advocate on behalf of all people with 
disabilities. Using the phone, e-mail and listservs, the contract responded to approximately 
6,000 specific requests for information on a range of topical areas including abuse and neglect, 
ADA Titles I, II, and III, community integration, education; housing, employment, criminal 
justice, voting and management (including human resource) issues. 

Additionally, the contract provided four major training sessions to approximately 1,000 P&A 
staff and/or Board members at the Skills Building Conference, the new CEO meeting and 
training, the P&A Annual Conference, and the Fiscal Managers Training. In addition, the 
contract provided teleconference and web-based trainings on emerging topics. 

Technical Assistance to University Centers for Excellence in Developmental Disabilities 

Technical assistance was provided to the UCEDD network through a variety of activities. 
Through the contract with the Association of University Centers on Disabilities, UCEDDs are 
provided regular updates and information about issues pertinent to developmental disabilities. 
The ADD staff also provides technical assistance on individualized basis. In addition, technical 
assistance visits are conducted to address individual program needs. Wisconsin received a 
Technical Assistance visit in fiscal year 2004, and technical assistance was provided to programs 
through the States that were reviewed through the MTARS process, including Nebraska, Texas, 
Colorado, Utah, Wisconsin, Arkansas, Alabama, and Virginia. 

Technical Assistance for Projects of National Significance, Family Support 360 

In fiscal year 2004, BETAH Associates of Bethesda, Maryland was awarded a contract to 
provide technical assistance to ADDs Family Support 360 grantees. BETAH staff coordinated 
the annual grantee technical assistance institute, hosting conference calls, providing expert 
knowledge upon request, and facilitating peer-to-peer grantee learning and problem solving. 
Additionally, BETAH fostered collaboration between ADDs Family Support 360 initiative and 
the Administration on Agings (AoAs) and Center for Medicare and Medicaids (CMSs) Aging 
and Disability Resource Centers. 

Information Collection and Dissemination 

ADD received technical assistance from Z-Tech Corporation to facilitate the collection and 
dissemination of information on ADD programs and developmental disabilities. The Online 
Data Collection System makes it possible for ADD to meet the reporting requirements of the DD 
Act and the Government Performance and Results Act of 1993 (GPRA), have quality assurance 
measures, and maintain communication between the grantees and ADD. In 2003 and 2004, 

The American Dream Belongs to Everyone: A Report to Congress, the President, and the National Council on Disability 

information was gathered, through Program Performance Reports, from 112 grantees. Z-Tech 
maintained the frequently asked questions and general content/appearance of the ADD web site 
and produced electronic and hard-copy publications to make collected information available to 
ADD headquarters and regional staff, grantees, consumers, the public, and other agencies. 

Interagency Activities 

The Administration on Developmental Disabilities has been working with interagency 
committees in the interest of individuals with developmental disabilities. Below are the 
interagency committees with whom ADD worked during this report period. 

For OMB, ADDs Commissioner co-chairs a working group to simplify data collection 
across eight federal Protection and Advocacy Systems grant programs. 
The Commissioner, as a representative of HHS, is a member of the U.S. delegation to the 
United Nations participating in the development of a disability rights treaty. 
For the Secretary, the Commissioner of ADD serves on the Interagency Committee on 
Muscular Dystrophy, the Interagency Autism Coordinating Committee (IACC), and the 
Interagency Committee on Disability Research. 
ADD, as ACFs representative, serves on multiple working groups led by the Secretarys 
Office on Disability related to the Presidents New Freedom Initiative (e.g., emergency 
preparedness, services to youth with co-occurring disabilities, employment, direct care 
workers, services to infants who are deaf, and youth in transition). 
ADD also serves as ACF representative on the United We Ride Interagency work group 
triggered by the Presidents Executive Order to improve transportation options for older 
citizens and individuals with disabilities. 
ADD coordinates ACFs responses to action plan updates related to disability for the 
Secretary and President on the New Freedom Initiative and the White House Commission 
on Mental Health, and coordinates the preparation of information about services to 
individuals with disabilities from unserved and underserved populations (e.g., homeless, 
Native Americans, Hispanics). 
ADD, in conjunction with the Child Care Bureau, Head Start, and the Office of Special 
Education Programs in the U.S. Department of Education is working to increase access to 
and participation in early care and education programs for children with disabilities. 
ADD promotes, among its grantees, awareness of and participation in public campaigns 
initiated by the Secretary related to womens health and the Medicare Prescription Card. 
In FY 2004 ADD expanded an existing grant to the Arc of the United States so that it 
could develop a website in plain English on the prescription drug card program. Funding 
for this website came through an interagency agreement, in which the Centers for 
Medicare and Medicaid Services transferred $12,000 to ADD. 

The American Dream Belongs to Everyone: A Report to Congress, the President, and the National Council on Disability 

Chapter 7: New Freedom Initiative Activities 

Olmstead Decision 

On June 22, 1999, the Supreme Court held in its landmark Olmstead decision that Title II of the 
Americans with Disabilities Act (ADA) requires States, whenever possible, to place qualified 
individuals with mental disabilities in community settings rather than in institutions. 

Since then, each State has worked to address the Olmstead Decision. For example, in 2002 a 
Task Force was established in Virginia to focus on Olmstead related activities. Virginias DD 
Council took an active role in helping with initiatives to obtain consumer input into the work of 
the Olmstead Task Force and report and funded the research initiative to gather and analyze data 
in support of Olmstead report recommendations. The Council developed formal 
recommendations and submitted them to the Secretary of Health and Human Resources 
regarding next steps in implementing the Olmstead plan. The Council is a member of 
Virginias Olmstead implementation team. 

In Iowa the Council has participated in Olmstead related activities since the first focus groups 
were held throughout the state. The Council participated in the development of the State plan 
and continues to participate in the Olmstead Real Choices Consumer Task Force. The 
Governors Executive Order 27 names the Olmstead Real Choices Consumer Task Force as a 
resource state agencies can tap as they identify and prioritize barriers to community living and 
develop plans for effective, efficient use of their resources in support of ADA goals. In response 
to the Executive Order, State agencies, with help from the Real Choices project, are providing a 
self-assessment of their effectiveness in promoting community living for people with disabilities. 
State agencies have designated specific staff to coordinate Olmstead-related activities and have 
provided preliminary plans to the Office of the Governor. 

New Freedom Initiative 

On February 1, 2001, within two weeks of taking office, President George W. Bush announced 
his New Freedom Initiative (NFI), one of his first major acts in office. This initiative is aimed at 
eliminating barriers that restrict Americans with disabilities seeking to participate in their 
communities through its four key components. 

1. Increasing access to assistive and universally designed technologies: 
Increase Federal investment in assistive technology research and development; and 
Increase funding for low-interest loan programs to purchase assistive technologies. 
2. Expanding educational opportunities for Americans with disabilities: 
Increase funding for the Individuals with Disabilities Education Act; and 
Focus on reading in early grades. 

The American Dream Belongs to Everyone: A Report to Congress, the President, and the National Council on Disability 

3. Integrating Americans with disabilities into the workforce: 
Provide resources to help small businesses comply with the Americans with 
Disabilities Act (ADA); and 
Promote awareness and utilization of Disabled Access Credit to assist small 
businesses in complying with the ADA 
4. Promoting full access to community life: 
Signing of an Executive Order 13217, on June 18, 2001, for swift implementation of 
the Olmstead Decision in a manner that respects the proper roles of the Federal 
government and States. The Executive Order articulated NFI goals to address 
barriers to full integration: 
a) Integrate Americans with disabilities into the workforce; 
b) Promote comprehensive array of community-based services and supports; 
c) Promote safe, decent housing and homeownership; 
d) Promote integration into and sustained participation in the workforce; 
e) Increase access to assistive and universally designed technology; 
f) Expand transportation options; and 
g) Promote full access to community life. 

DD Activities Supporting the New Freedom Initiative 

Colorado UCEDD 

The Colorado Youth WINS (Work Incentive Network of Supports) Youth Transition Process 
Demonstration (YTPD) was funded by the Social Security Administration. The overarching goal 
of the demonstration project was to remove major barriers and disincentives to work for youth, 
aged 14-25, who receive, or who are likely to receive payments through programs such as 
Supplemental Security Income (SSI) or Child Disability Benefits (CDB). The project, which 
promoted economic self-sufficiency and career advancement for disabled youth, utilized a two-
prong approach to achieve this system goal: 

1. A Transition Team located in each selected community and housed at the local 
workforce center provided specialized and intensive transition services and training to 
youth and their families; and 
2. A mix of federal waivers (SSA and U.S. Department of Labor) applied to participating 
youth to eliminate or greatly reduce many of the current regulatory barriers to 
employment. 
Florida Council 

The Florida Shake-A-Leg Miami Program developed an innovative, family-centered mentoring 
program for children with disabilities. Assistance was provided to high school students in an 
inclusive environment. The program served 532 participants and exceeded the target number of 
participants. 

Illinois UCEDD 

The Partner for Inclusive Employment (PIE) coalition was created as a partnership between the 
Institute on Disability and Human Development (the Illinois UCEDD) and the Westside Jobs 
Collaborative to address the issue of a 70% unemployment rate among people with disabilities. 

P.I.E. coalition members came from government agencies, non-profit groups, advocacy 
organizations, and corporate entities. The focus of this grass-roots effort was to develop and 

The American Dream Belongs to Everyone: A Report to Congress, the President, and the National Council on Disability 

implement an industry friendly protocol for people with disabilities in the job market. The P.I.E. 
model was a Job-Match Fair where job-seekers and employers are both pre-screened, which 
promoted successful matches between the two. P.I.E. was nominated as one of the finalists for 
the Midwest region's Council of State Governments' Innovations Award. 

Iowa UCEDD 

The Iowa Department of Human Services (DHS) subcontracted their Real Choices Systems 
Change grant to the Iowa UCEDD. The project included policy analysis, research (e.g. 
clinical screening/assessment protocols for level of care decision-making), training, and 
information sharing initiatives. The UCEDD worked with the Olmstead Task Force to 
amend Iowas existing waivers to add self-directed services that would allow individuals to 
cash out and use resources with more flexibility and with greater consumer control. 

Maryland Council 

The Maryland Council received a Medicaid Infrastructure Grant to assist with operational 
aspects of the Medicaid Buy-In Program Implementation. The federal grant was also used to 
assist Maryland in planning for a statewide system of Personal Assistance Services to support 
people with disabilities in competitive employment. The Council, along with the Maryland 
Coalition for Work Incentives Improvement, advised the State about the needs of people with 
disabilities and the urgency for the program. The Maryland Coalition for Work Incentives 
Improvement also worked to provide information to people with disabilities and their 
families about the Ticket to Work Program that began in November 2003. The Coalition 
drafted and distributed Lets Talk Ticket fact sheets. 

Minnesota UCEDD 

The Minnesota UCEDD carried out a two-component study on assistive technology. The first 
component was the development of a bibliography summarizing research on which cognitive 
technologies were being used, or could potentially be used, by persons with intellectual and/or 
developmental disabilities. The second component of the research involved interviews and 
surveys of public officials in State MR/DD agencies and reviews of State budgetary documents 
and published material on the methods of financing assistive technology for persons with 
intellectual and/or developmental disabilities. The study explored mounting a state-by-state, 
nationwide study of the financing of AT, including State agency Medicaid programs, public 
school special education programs, and State vocational rehabilitation agencies. 

Missouri Council 

The Missouri Council partnered with the Department of Mental Health and the UCEDD to obtain 
an Independence Plus Grant that will offer support in studying the states Medicaid waiver and to 
expand services that support increased independence and choices when the next waiver is 
written. Staff and Council Members have also been active in the Real System Change efforts to 
develop and implement a curriculum to inform individuals in habilitation centers and nursing 
homes of their rights to obtain community services and supports. The Council has also 
encouraged and supported the Department of Mental Healths efforts to close down some beds in 
State institutions where the buildings were aging and deteriorating and significant numbers of 
residents had shown interest in community services. Council members have provided leadership 
in the Department of Mental Healths system redesign, encouraging them to build and support a 

The American Dream Belongs to Everyone: A Report to Congress, the President, and the National Council on Disability 

stronger network of community options and to provide greater opportunities for independence 
and choice. 

New York Council 

The New York Council collaborated with the State Department of Labor and the States 
workforce development authorities to facilitate access for people with disabilities to One-Stop 
services and supports. The Council also supported the Office of Mental Retardation to develop 
self-employment as a viable option for day services and employment, including self-
employment. Over 30 individuals were given assistance to establish their own business 
enterprises. This project also worked with the State vocational rehabilitation agency to 
implement a self-employment demonstration pilot. The Council, in collaboration with the 
Department of Health, the State Office for the Aging, and the State Education Departments 
Independent Living Programs, funded six Independent Living Centers to implement a local 
community transition process for people with disabilities in nursing home placements, or at risk 
of such placements. 

Texas UCEDD 

The Texas Center for Disability Studies (UCEDD) managed the Texas Assistive Technology 
Partnership. Services of the project included providing: information and advice to individuals 
and organizations about a wide range of assistive technology (AT) issues; training and technical 
assistance to AT professionals and others who help people with disabilities access and use 
technology; assistance to policymakers at all levels of the service delivery system to assure that 
technology access is incorporated into public policies for education, employment, community 
services and supports, health care and telecommunications, as required by laws like the ADA and 
IDEA; and statewide research on technology trends and consumer experience and satisfaction 
with technology access.