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

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

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Through the DD Act and other laws such as the Americans with Disabilities Act, the Social 

Security Act, the Rehabilitation Act, and the Individuals with Disabilities Education Act, each of 

which addresses one or more of the forms of discrimination faced by individuals with

disabilities, ADD’s grantees are empowered to:

 Help individuals with developmental disabilities and their families to become effective 

advocates for themselves;

 Build the capacity among service providers and other professionals to treat individuals 

with developmental disabilities in an appropriate and respectful way; and

 Bring about changes in human service systems and communities so that individuals with 

developmental disabilities and their families have more choices and control over services

and supports.

ADD and its grantees are also empowered by two new initiatives of President George W. Bush 

related to individuals with disabilities. First, President Bush launched the New Freedom 

Initiative on February 1, 2001. The purpose of the New Freedom Initiative is to fully integrate 

Americans with disabilities into the mainstream population, allowing them full access to voting, 

employment, education, home ownership, community activities, transportation, and many other 

aspects of life and liberty that all Americans should enjoy. Through Federal Government actions 

and public-private partnerships, three broad goals are being addressed. Those goals are to:

1. Increase access to assistive and universally designed technologies;

2. Expand educational opportunities for Americans with disabilities; and

3. Promote full access to community life.

Second, on June 18, 2001, the President signed the Executive Order on Olmstead (Olmstead v. 

L.C., 527 US 581 (1999)), Executive Order 13127, in which he directed Federal agencies to 

address the decision in the Olmstead case. In that decision, the Supreme Court determined that 

the Americans with Disabilities Act required states to place qualified individuals with mental 

disabilities in community settings rather than institutions whenever treatment professionals 

determine that such placement is appropriate, the affected persons do not oppose such placement, 

and the state can reasonably accommodate the placement, taking into account the resources 

available to the state and the needs of others with disabilities. In the Executive Order, the 

President directed the Federal Government to assist states and localities to implement the 

Olmstead decision quickly, so as to ensure that all Americans have the opportunity to reside near 

their families and friends, live more independently, engage in productive employment, and 

participate in daily community life.

Finally, ADD and its grantees are empowered by Secretary Michael Leavitt’s goals for the

Department of Health and Human Services to:

 Transform the health care system by eliminating inequalities;
The American Dream Belongs to Everyone: A Report to Congress, the President, and the National Council on Disability

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 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 selfreliance and work.

ADD’s grantees help individuals with developmental disabilities and their families in many 

different ways. The DD Act directs them to assist individuals with developmental disabilities 

through activities in one or more areas, including: quality assurance, education and early 

intervention, child care, health, employment, housing, transportation, recreation, and other 

services available or offered to individuals in a community, including formal and informal 

community supports, that affect their quality of life. In addition, what ADD’s grantees do with 

the funds they receive from ADD is influenced by the suggestions and advice they receive from 

individuals with developmental disabilities and their families. The DD Act requires grantees to 

collect and consider their suggestions and advice.

By listening to and caring about individuals with developmental disabilities, by having a strong, 

but flexible law behind them, and by sharing a common mission with the President and Secretary 

Leavitt, ADD’s grantees play a central role in bringing the American dream to individuals with 

developmental disabilities and their families.

This report tells stories about ADD’s grantees and how they have changed lives – through 

technology, new jobs, new opportunities, empowerment training, and protection of rights. Here 

are some highlights.

 As the result of grantees’ efforts, individuals with developmental disabilities are more 

independent and self-sufficient. In Minnesota, individuals with developmental 

disabilities have been taught document scanning and now have white collar jobs in 

technical and medical environments. In rural Arkansas, a mobile van allows individuals 

with developmental disabilities to have access to dental services for the first time. In 

Mississippi, a Smart Car has been developed that allows individuals with developmental 

disabilities to drive. In Georgia, an ongoing study is tracking the experiences of 

individuals with developmental disabilities who recently moved from institutional 

placements to homes in the community, thereby enabling state officials to ease future 

transitions.

 As a result of grantees’ efforts, children with developmental disabilities are integrated 

through inclusive education, early intervention, and child care. New Mexico and Indiana 

train child care providers to work with children with developmental disabilities. 

Connecticut offers training for parents and professionals. New York provides early 

intervention services that allow for access to appropriate resources and services.

Montana and Massachusetts support programs that teach students with developmental 

disabilities social and career skills in order to ease the transition from school to work. 

Other grantees are promoting inclusion of children with developmental disabilities at all 

stages of education.
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 Through grantees’ efforts, individuals with developmental disabilities have better quality 

services and support. Ohio has a “report card system” that allows people with 

developmental disabilities to “grade” care providers. California provides activities and 

community involvement opportunities to seniors with developmental disabilities.

 Through the work of grantees, individuals with developmental disabilities are trained and 

active in self-advocacy. Now, in every state, after many years of having little voice in 

laws and services that are important to them, individuals with developmental disabilities 

are creating change. Some initiatives that are helping to facilitate this change include

self-advocacy and system advocacy training in Alaska and Tennessee, outreach in 

Hispanic communities in Illinois, and the availability of legal information over the 

telephone in Arizona.

 Through grantees’ efforts, individuals with developmental disabilities have their 

complaints of abuse, neglect, discrimination, and other civil rights violations addressed in 

varied settings. In addition to addressing rights violations on a case-by-case basis, many 

states and Territories support programs to prevent these violations from occurring in the 

first place. Wyoming provides a variety of resources specially designed for people with 

developmental disabilities who become victims of crime. California provides

individuals with developmental disabilities and their families and caregivers with health 

and safety training designed to minimize risk of abuse and keep people with 

developmental disabilities safe.

ADD’s grantees are committed to bringing the American dream to individuals with 

developmental disabilities. This report documents and celebrates their efforts to secure choices 

and control for individuals with developmental disabilities and their families. Through the 

efforts of ADD’s grantees, individuals with developmental disabilities have greater freedom and

independence regarding where and with whom they live, and where they work. They have better 

access to health care, education, child care, transportation, and recreation and are protected from 

abuse, exploitation, and denial of rights. It is a great story and a powerful record!

Together, we believe these policies, grants, and advocacy activities establish a powerful record 

of achievement in service to individuals and families challenged by developmental disabilities.

/s/

Patricia A. Morrissey, Ph.D. 

Commissioner

Administration on Developmental Disabilities
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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 ADD’s grantees: the State Councils on Developmental Disabilities (Councils), Protection and 

Advocacy Agencies (P&As), University Centers for Excellence in Developmental Disabilities 

(UCEDDs), and Projects of National Significance (PNS).

ADD’s goal and responsibility is to assure that individuals with developmental disabilities and 

their families participate in the design of and have access to needed community services, 

individualized supports, and other forms of assistance that promote self-determination, 

independence, productivity, and integration and inclusion in all facets of community life.

In order to best showcase ADD’s achievements, this report is structured around ADD’s Program 

Assessment Rating Tool (PART) Long Term Goals and Annual Measures, which were approved 

by the Office of Management and Budget (OMB) in fiscal year 2002.

The PART was developed to assess the effectiveness of Federal programs and help inform 

management actions, budget requests, and legislative proposals directed at achieving results. 

The PART examines various factors that contribute to the effectiveness of a program and 

requires that conclusions be substantiated with evidence. The PART assesses if and how 

program evaluation is used to inform program planning and to corroborate program results.

ADD’s PART measures are the same measures used to evaluate its results in compliance with 

the Government Performance and Results Act (GPRA). Highlights of this report, as structured 

by the PART/GPRA performance measures, are as follows. It should be noted that these 

numbers, and other statistics throughout this report, are measures of persons served by each 

grantee in specific issue areas. In a given year, one person may be assisted by multiple 

programs; these statistics refer to the number of services rendered rather than the number of 

people served:

Individuals with developmental disabilities are more independent and self-sufficient as a 

result of employment, transportation, housing, and health services

Employment:

Through the activities of 61 UCEDDs, 70,806 people participated in projects that helped 

individuals with developmental disabilities to acquire, retain, or advance in employment.

Forty Councils reporting on this priority made employment more available or obtainable for

2,937 people with developmental disabilities.
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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.
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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
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our partners and grantees to continue to meet the challenges that lie ahead, and to strive to 

achieve a better way of life for all Americans.

Additional data are provided throughout the body of this report, and detailed statistical tables are 

available in Appendix A.

How this Report is Structured

Chapter 1: The Administration on Developmental Disabilities provides an overview of the major 

ADD grant programs established through the DD Act, explaining the unique role that each grant 

program plays in improving the lives of people with developmental disabilities.

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

PART Performance measures.

Additionally, the report provides information regarding accountability (Chapter 3) and Projects 

of National Significance (Chapter 4).

Chapter 5: DD Network Collaborative Projects, Activities, and Progress gives an overview of 

how collaboration allows ADD’s grantees to maximize the impact their programs have on the 

lives of people with developmental disabilities. Chapter 6: Technical Assistance and 

Interagency Activities provides information about the technical assistance ADD offers its 

grantees, and discusses ADD’s participation in interagency committees. Chapter 7: New 

Freedom Initiative Activities explains the Supreme Court’s Olmstead Decision and President 

George W. Bush’s New Freedom Initiative, and ADD’s contribution to that initiative.

Appendix A of this report provides detailed statistical information regarding the outcomes of the 

various initiatives supported by ADD’s grantees. Appendix B lists contact information for all 

grantees.

Though it cannot possibly describe the entire scope of activities conducted by ADD’s grantees, 

ADD hopes that this report will give readers a sense of how these programs work to improve the 

lives of all Americans and to help individuals with developmental disabilities achieve greater 

independence and self-sufficiency.
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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.

ADD’s 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.

State Councils on Developmental Disabilities (Councils): Councils are composed of 

individuals with significant disabilities, their parents and family members, and representatives of
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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 

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.
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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.
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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.
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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 Governor’s 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.

1 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

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The following table, and others like it in this report, represent the outcomes of the many projects 

funded and sponsored by ADD’s 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

UCEDD’s

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
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Health Care

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 College’s dental health care system, and fiscal year 2003 was the last year 

Council funding was required.
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Council Health Care Statistics

30000

FY 2004

FY 2003

25000

8,666 15,463 9,074

20000

Number of People with

Developemental Disabilities 15000

10000

17,682 12,730 8,312

5000

0

People have needed health 

services through Councils' 

efforts

People involved in systems 

advocacy on health care

People trained in systems 

advocacy on health issues

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 selfadvocacy 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

UCEDD’s

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 person’s 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 world’s 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 University’s 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

30000

FY 2004

FY 2003

25000

20000

Number of People 

with

Developmental Disabilities

15000

17,141 4,655 3,875

10000

5000

9,200 4,944 3,509

0

People have transportation People active in systems People trained in system

services through Council 

efforts

advocacy about transportation advocacy about transportation

Transportation Related Activities

The effect that transportation issues can have on other aspects of an individual’s 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, Louisiana’s 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

Number of people reached through

UCEDD’s

activities in transportation issues

FY 2004

32,965

UCEDD Transportation statistics were not available for FY 2003.

Housing

Safe, independent, and accessible housing provides individuals with freedom and selfsufficiency. 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 Deborah’s 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 

Deborah’s 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

8000 FY 2004

FY 2003

7000

2,567

6000

5000

Number of People with

Developmental Disabilities 4000

3000

1,729

2000

1000

4,616

765

444 1,973

0

Individuals have homes of their People moved from congregate 

choices through Council efforts settings to homes in community

Units of affordable, accessible 

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 Connecticut’s 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 York’s 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 Councilfunded 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.

Indiana’s 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, familycentered, 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
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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, Maine’s 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 

ADD’s 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

Councils 12 16

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&A’s efforts in Maine was important because the children were allowed to 

remain in their local school, interacting with their peers. The P&A’s intervention helped to build 

a foundation for the parents to advocate for the children’s 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 Mark’s 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 Mark’s strengths and interests, namely his 

enthusiasm for auto mechanics.

Concerned that the school district was not meeting Mark’s 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.

Washington’s Special Education Advocacy Project is one of many ADD grantees’ projects 

designed to give families like Mark’s 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 Mark’s 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 ADD’s 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 student’s 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
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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

27,351 Students have the 

education and support they 

need to reach their 

developmental goals

18,432 Infants and young 

children have the 

services/support they 

needed to reach 

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
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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, Montana’s 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
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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 ADD’s 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 Ohio’s “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
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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 selfdetermination 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.
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The following table, like other tables in this report, represents the outcomes of the many projects 

funded and sponsored by ADD’s 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 ADD’s 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, Kate’s 

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, Colorado’s Protection and Advocacy Agency 

(P&A) became involved in Kate’s case at the request of her parents. The Legal Center’s 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 Center’s 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 

Center’s staff persisted in their efforts to help her adjust. Kate now enjoys a more independent 

life in an integrated setting.

Appropriate services, such as Kate’s 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.
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“Jamal,” a young adult with cerebral palsy, initially contacted the Guam Legal Services Center, 

Guam’s 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 Jamal’s 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 Jamal’s 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 Jamal’s efforts and P&A’s 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 ADD’s 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
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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.

Delaware’s 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 staff’s 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
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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

UCEDD’s

Activities in Quality Assurance

Number of people reached through

UCEDD’s

Activities in Community Support

FY 2004

62,024

FY 2003

99,296
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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, Tennessee’s 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, ADD’s 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 selfadvocacy skills nationwide. “Partners in Policymaking” was created by the Minnesota 

Governor's Council on Developmental Disabilities in 1987. It is an innovative, competencybased 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.
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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 Center’s work is 

to help parents understand the Individuals with Disabilities Education Act (IDEA) and learn how 

to most effectively advocate for their children’s rights.

Similarly, West Virginia’s 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.
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Council Self-Advocacy Statistics

1,851 People trained in 

systems advocacy about 

quality assurance 36,569 People trained in 

leadership, self-advocacy, and 

self-determination

41,200 People attained 

membership on public and 

private bodies and other 

leadership coalitions

33,874 People active in systems 

advocacy about quality 

assurance

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&A’s 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, Arizona’s 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.
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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.

 Maine’s Council provided financial and other types of support to “Speaking Up for Us 

(SUFU),” the state’s 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.
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 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 state’s 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 Carolina’s 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 Justice’s 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.
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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. Peter’s 

family requested a special Interdisciplinary Team meeting, and a plan was developed to enhance 

Peter’s safety through staff education and modifications to his environment. In addition, Peter’s 

psychiatrist provided new medication to reduce Peter’s 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 staff’s 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 Frank’s needs were not being adequately addressed by his residential program’s 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 

Frank’s 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. ADD’s 

grantees sponsor a number of programs to promote inclusive education practices, but 

occasionally, intervention is necessary in individual cases to address discriminatory practices.
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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/Asperger’s 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 Miguel’s behalf. It was found that the school district had violated 

Miguel’s 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 state’s P&A because Pablo’s school was refusing the one hour of inclusion 

required in Pablo’s 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. 

Pablo’s 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
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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 grantee’s:

 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 State’s 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
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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 State’s 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 ADD’s 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
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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 selfdetermination, assisted with family leadership development, and increased opportunities for selfadvocates 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 

Bush’s New Freedom Initiative and the U.S. Supreme Court’s Olmstead decision, both of which 

promote community living and greater independence.
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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 Bush’s 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
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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 faithbased groups. Services and supports are for any family member as needed, not just the member

with a developmental disability. As a family’s 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.
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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
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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:
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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
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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 Governor’s 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 another’s 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 network’s 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 state’s official Olmstead planning group and all 

three agencies continue to work together in the Olmstead planning process. The Council is
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assisting in a project of the state’s 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 twoway 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 MunroeMeyer 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.
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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.
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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 ADD’s 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 ADD’s Family Support 360 initiative and 

the Administration on Aging’s (AoA’s) and Center for Medicare and Medicaid’s (CMS’s) 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,
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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, ADD’s 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 ACF’s representative, serves on multiple working groups led by the Secretary’s 

Office on Disability related to the President’s 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 President’s Executive Order to improve transportation options for older 

citizens and individuals with disabilities.

 ADD coordinates ACF’s 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 women’s 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.
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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. Virginia’s 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 

Virginia’s 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 

Governor’s 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.
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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 twoprong 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
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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 Iowa’s 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 “Let’s 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 state’s 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 Health’s 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 Health’s system redesign, encouraging them to build and support a
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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 State’s 

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 selfemployment. 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 Department’s 

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.