The American Dream Belongs to Everyone: 

A Report to Congress, the President, 

and the National Council on Disability

Fiscal Years 2005-2006

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.

The Administration on Developmental Disabilities (ADD)

is built on this belief, and in partnership with our grantees, 

we work to make that dream accessible to Americans with 

developmental disabilities. We believe that if the rights of 

any segment of society are denied, all people's rights are 

imperiled.

Historically, people with developmental disabilities have 

often been treated as second class citizens—segregated in

educational settings, deprived of personal autonomy, left out of public policy, and not

fully included in their communities. Fortunately, this is changing. The voices of people 

with developmental disabilities are being heard, and changes in policy are a testament to 

the power of those voices. ADD is committed to ensuring that those voices continue to 

be heard—and understood. We are dedicated to the ongoing fight for the personal and 

civil rights of individuals with developmental disabilities.

Developmental disabilities are severe, life-long disabilities attributable to mental and/or 

physical impairments, manifested before age 22. Developmental disabilities result in 

substantial limitations in three or more areas of major life activities:

 capacity for independent living 

 economic self-sufficiency

 learning 

 mobility

 receptive and expressive language 

 self-care

 self-direction

ADD carries out its mandate through the direction given to us in the Developmental

Disabilities Assistance and Bill of Rights Act of 2000 (DD Act). The law states:

“The purpose of this title (Title I, P.L. 106-402(b)) is to assure that individuals 

with developmental disabilities and their families participate in the design of and 

have access to needed community services, individualized supports, and other 

forms of assistance that promote self-determination, independence, productivity, 

and integration and inclusion in all facets of community life, through culturally 

competent programs authorized under this title”...
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This legislation exists to address a problem: that historically, individuals with disabilities 

have often been isolated and segregated from the rest society. Individuals with

disabilities experience discrimination every day. Manifestations of discrimination 

include archaic policies and practices that do not fully meet the needs of Americans with 

developmental disabilities as well as facilities and programs that have not been modified 

to permit inclusion of people with disabilities. Individuals with developmental 

disabilities may experience inferior services, programs, activities, benefits, jobs, or other 

opportunities.

In order to combat this discrimination, ADD directs four grant programs authorized by 

the DD Act. The four ADD grant programs are: University Centers for Excellence in 

Developmental Disabilities (UCEDDs), State Councils on Developmental Disabilities 

(Councils), State Protection and Advocacy Agencies (P&As), and Projects of National 

Significance (PNS).

ADD grantees in each State work cooperatively with other grantees and with individuals, 

businesses, and communities to form statewide networks of support that are tailored to 

positively impact the specific needs people with developmental disabilities within a 

particular State, city, or community. For example, the needs of individuals with 

developmental disabilities in rural Arkansas may be significantly different from the needs 

of individuals in midtown Manhattan. Because ADD funding supports at least three 

grantees in every State, grantees are able to meet the specific needs of the people and 

communities with whom they are most familiar.

ADD’s grantees reach out to individuals with developmental disabilities and their families

in a variety of ways. The DD Act directs grantees to assist individuals with 

developmental disabilities by providing support in one or more areas, including: child 

care, education and early intervention, health, employment, housing, transportation, and 

recreation. In addition, ADD grantees are directed by the DD Act to sponsor projects in 

quality assurance to protect the civil and human rights of people with developmental 

disabilities, protect them from abuse and neglect, and ensure that they have access to high 

quality services and supports.

People with developmental disabilities and their families influence how grantees use the 

funds they receive from ADD. As required by the DD Act, grantees to consider the 

suggestions, knowledge, experience, and opinions of individuals with developmental 

disabilities to shape the standards by which programs and policies operate.

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

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

Initiative on February 1, 2001. The New Freedom Initiative is intended to fully integrate

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

voting, employment, education, home ownership, community activities, transportation,

and many other aspects of life and liberty that all Americans should enjoy.
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Through Federal Government actions and public-private partnerships, three broad goals 

are being addressed. These goals are to:

1. Increase access to assistive and universally designed technologies;

2. Expand educational opportunities for Americans with disabilities; and

3. Promote full access to community life.

Second, on June 18, 2001, the President signed Executive Order 13127 in which he 

directed Federal agencies to address the decision in the Olmstead case (Olmstead v. L.C.,

527 US 581 (1999)). In that decision, the Supreme Court held that the Americans with

Disabilities Act requires States to place qualified individuals with mental disabilities in 

community settings rather than institutions whenever possible.

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

through assisting individuals with developmental disabilities to advocate for themselves 

and through ensuring access to education, fostering integration into communities, 

embracing new technologies, and providing opportunities.

Highlights include:

 As a result of grantees’ efforts, children with developmental disabilities and their 

families have access to better child care options. The Arkansas UCEDD supports 

the “Welcome the Children” project in order to ensure that quality child care 

programs are available to Spanish-speaking families affected by disabilities.

 Grantees worked to ensure that the educational needs of children with 

developmental disabilities were met as the child progressed from pre-school 

through elementary and secondary school and into adulthood. One example 

involves “Carl,” an 11-year-old Navajo boy with developmental disabilities who 

was attending a public school in an extremely segregated setting. Carl’s parents 

requested the help of the Arizona P&A, and through their advocacy, Carl received 

comprehensive independent evaluations and is now placed in the regular 

classroom for a majority of the school day.

 Grantees supported programs that helped individuals with developmental 

disabilities lead healthy lives. For example, the Texas Council funded several 

projects that allowed parents to train pediatric residents on the delivery of longterm care to children with chronic illness or disabilities. The Houston Project 

trained 43 pediatric residents and 13 new parent teachers. In San Antonio, 25 

pediatric residents and two parent teachers were trained.

 As a result of grantees’ work, people with developmental disabilities were able to 

obtain or maintain employment opportunities consistent with their interests, 

abilities, and needs. The Alaska UCEDD supports the Self-Employment Training 

Grant program, designed to help individuals with developmental disabilities find 

success and fulfillment in self-employment.
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 Grantees worked to increase the availability of accessible, reliable transportation.

The Pennsylvania Council developed and supported the Persons with Disabilities 

Transportation Program. This service provides transportation for individuals with 

disabilities, especially in rural areas where other transportation options are 

minimal.

 Grantees increased the inclusion of people with developmental disabilities in 

community activities, public events, social gatherings, and other everyday 

diversions. New Hampshire’s P&A is working to improve the restaurant 

experience for diners with disabilities. The Rolling Gourmet offers diners with 

disabilities the ability to review restaurants and have their reviews publicized for 

other diners to consider when choosing a restaurant.

 Grantees helped improve the quality of life for individuals with developmental 

disabilities. In Vermont, a Family Support project funded by a PNS grant 

empowered families to train other families to be self-advocates. Local parents 

who have encountered the service system first-hand were hired on a part-time 

basis to assist other parents in navigating the service system. Peer navigators also 

provide guidance, comfort, and encouragement to families in crisis. A statewide 

management team, which includes family members, assists the peer navigators 

with identifying resources and locating services.

I am proud to lead the Administration that oversees these efforts, and I believe that the 

achievements of these grantees have done much to advance the civil and personal 

liberties of individuals with developmental disabilities, helping to secure the rights and 

improve the lives of the larger community. Through the efforts of ADD’s grantees in 

Fiscal Years 2005 and 2006, individuals with developmental disabilities received child 

care and early intervention services that addressed their needs early, providing a 

foundation for a better life. They received quality educational services in classrooms 

with their neighbors and peers. Programs and other support were made available to help

them live healthier lives, pursue careers that interested and excited them, and have access 

to transportation that allowed them to travel to the places they wanted to go. They were 

able to enjoy recreational and social activities, and become contributing members of their 

communities.

They received services that not only helped them as individuals, but supported their 

families as a whole. I believe that by empowering individuals and families to make 

choices and advocate for themselves, we improve their quality of life, both in the present 

and in future generations.

I am pleased to present this report as a record of the achievements of ADD’s grantees. 

This report documents and celebrates the efforts of ADD’s grantees to secure choices and 

control for Americans with developmental disabilities and their families, and to support 

these individuals in the pursuit of their dreams.
The American Dream Belongs to Everyone: A Report to Congress, the President, and the National Council on Disability

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/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

Fiscal Years 2005-2006

Executive Summary

The Administration on Developmental Disabilities (ADD) is committed to the idea that 

the American dream belongs to everyone. Our mission, and the mission of our grantees, 

is to help Americans with developmental disabilities in their pursuit of the American 

dream.

ADD grantees share a mission and vision: helping individuals with developmental 

disabilities to achieve greater independence and self-sufficiency in all facets of private 

and community life. Through education, advocacy, and the implementation of diverse 

projects, ADD grantees help individuals with developmental disabilities receive quality 

care and education, protect their health, excel in the careers of their choice, travel freely, 

live independently, participate in activities they find fulfilling, and make informed 

choices about the kinds of services and supports they receive.

In the past, people with developmental disabilities have often been on the receiving end 

of change, having very little voice in the laws that affect them, the kinds of services that 

are available to them, or the accommodations made for them in health, housing, 

education, and employment. Today, people with developmental disabilities are creating 

change by advocating for their rights and shaping the world around them. ADD 

encourages programs that promote and support that change. Through these programs, 

ADD is helping individuals with developmental disabilities to create an environment of 

self-sufficiency, inclusion, and acceptance for the current population as well as for future 

generations.

As required by the Developmental Disabilities Assistance and Bill of Rights Act of 2000 

(DD Act), the Fiscal Year 2005-2006 report is based on the analysis of individual grantee 

reports submitted annually to this department. This report reflects the achievements of 

ADD’s four grant programs:

• University Centers for Excellence in Developmental Disabilities (UCEDDs);

• State Councils on Developmental Disabilities (Councils);

• Protection and Advocacy Systems (P&As); and

• Projects of National Significance (PNS).

Each type of grantee has a specific role to play and each complements the others, 

strengthening the reach and power of their respective State DD Network. Because each 

grantee has a distinctly different focus, their individual statistics and achievements should
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not be compared directly to one another. Data reflected in these pages are from individual 

grantees. The DD Act directs grantees to spend funds on initiatives recommended by 

people with developmental disabilities, family members and advocates. The law does not 

require grantees to engage in activities in each area of emphasis, thus the data reflects 

what people in a State consider important.

The information highlighted below is a representative sample of the activities undertaken 

by ADD’s grantees in Fiscal Years 2005 and 2006. For each grant program, we 1) 

highlight in an area of emphasis how a specific grantee had a positive impact on the lives 

of people with developmental disabilities and 2) provide national data for the same area 

of emphasis.

Please note that these numbers, and other statistics throughout this report, are measures of 

persons served by each grantee in specific issue areas. The DD Act directs grantees to 

spend funds on issues that individuals with developmental disabilities, families, and 

advocates have asked the grantees to address. Grantees have the flexibility to focus on 

one or more areas of emphasis listed in the DD Act: employment, health, education and 

early intervention, housing, transportation, child care, recreation, and quality assurance. 

Public input from individuals with developmental disabilities is the basis of each 

grantee’s annual planning process: how many areas to invest in, the amount invested, and 

what to do with the ADD funs received. Thus, given that any grantee’s program focus is 

subject to change each year, ADD does not promote or endorse comparisons among 

grantees, programs, or across years for individual grantees or across grantees.

The outcome measures shown in these pages are a representative sample of outcome 

measures reported in the grantees’ annual Program Performance Reports.

UCEDDs EMPLOYMENT

The Illinois UCEDD created the Partner for Inclusive Employment (P.I.E.) Coalition 

to address the issue of a high unemployment rate among people with disabilities. P.I.E. 

coalition members come from government agencies, non-profit groups, advocacy 

organizations, and corporate entities. The focus of this grass-roots effort is to develop and 

implement an industry-friendly protocol for people with disabilities in the job market.

The P.I.E. model is a Job-Match Fair where job-seekers and employers are both prescreened, promoting successful matches between both. The program was nominated as a 

finalist for the Midwest region's Council of State Governments' Innovations Award.

THE NATIONAL PICTURE

In Fiscal Year 2006, 113,195 people participated in Nationwide UCEDD projects 

aimed at helping individuals with developmental disabilities to acquire, retain, or 

advance in employment in integrated settings in a community. Because UCEDDs 

only recently initiated their current system of data collection, comparative statistics 

are not available for Fiscal Year 2005.
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Councils CHILD CARE

In Louisiana, the Council funded Partnerships For All Children Together (Project 

PACT). This project was designed to enhance and expand the capacity of child care 

providers to support and include young children with disabilities within community child 

care environments in the Greater New Orleans area. Project PACT uses a communitybuilding process designed to establish and maintain long-term relationships across child 

care providers and administrators, early intervention specialists, early intervention system 

administrators, and families. General knowledge workshops are offered free to any 

interested family member, child and family care providers, and early intervention 

specialists. The project also provides long-term, intensive support to a selected group of 

child care providers that have enrolled children with disabilities. Project PACT 

coordinates on-site follow-up to support families, child care providers, and early 

intervention specialists in addressing the individual needs of young children with 

disabilities.

THE NATIONAL PICTURE

In Fiscal Year 2005, 3,092 families of children with developmental disabilities across 

the Nation benefited from expanded availability of affordable, appropriate child care 

with accessible facilities. In Fiscal Year 2006, 2,636 people were reached.

P&As EDUCATION

“Maggie’s” mom contacted the Alabama P&A because she was concerned about her 

daughter’s education. Maggie was nine years old at the time, and has autism. At the time 

her mother contacted the P&A, Maggie had been taken out of school and was being home 

schooled because her mother objected to Maggie’s educational placement -- a selfcontained classroom and access to non-disabled peers only for lunch and gym. Maggie’s 

mom wanted her daughter educated in a regular education classroom. She believed 

Maggie could handle such a placement and would benefit academically and socially from 

more interaction with the larger school community. The P&A represented Maggie at an 

Individualized Education Program (IEP) meeting, advocating for an appropriate 

educational placement with supports. As a result of the P&A's intervention, Maggie has 

returned to school and is receiving a significant amount of time on a daily basis in the 

regular education classroom. She receives only math and language arts instruction in the 

self-contained class, and the remainder of her day is spent in an inclusive environment, 

interacting with her peers.

THE NATIONAL PICTURE

In Fiscal Year 2005, P&As worked with parents, educators, school administrators, 

and policy makers Nationally to ensure that 11,736 students with developmental 

disabilities gained or maintained access to appropriate educational opportunities in 

their local areas. In Fiscal Year 2006, 12,242 people were reached.
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Projects of National Significance

In New Mexico, a Family Support 360 program has partnered with a Native-American 

nonprofit organization to provide a comprehensive array of culturally appropriate 

services to families who have a child with a developmental disability. Project staff with 

laptops travel to four Pueblos, work with tribal leaders, and visit families in need at their 

own homes. A steering committee comprised of families, tribal members, and key 

agencies oversees the implementation of the four centers. This project recognizes the 

sensitive need to balance tribal sovereignty with State and Federal laws.

THE NATIONAL PICTURE

In Fiscal Years 2005 and 2006, PNS grants funded 21 Family Support 360 programs 

as well as 15 Youth Centers and several data collection projects.

ADD is pleased with the achievements of its grantees and with the significant progress 

that has been made, but recognizes the need for additional improvement in the services 

and opportunities available to individuals with developmental disabilities. We look 

forward to working with our partners and grantees to continue to meet the challenges that 

lie ahead, and to create a bridge to a better way of life for all Americans.

How this Report is Structured

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

the major ADD grant programs established through the DD Act, explaining the unique 

role that each grant program plays in improving the lives of people with developmental 

disabilities.

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

Chapters 3, 4, and 5 provide profiles of grantee programs and an overview of outcome 

statistics, structured around ADD’s areas of emphasis.

Additionally, the report provides information regarding Projects of National Significance

(Chapter 6) and Accountability (Chapter 7).

Chapter 8: Emergency Preparedness gives an overview of ADD’s grantees efforts to 

ensure that the disability community is informed and protected in the event of an 

emergency.

Chapter 9: Technical Assistance and Interagency Activities provides information about 

the technical assistance ADD offers its grantees and discusses ADD’s participation in 

interagency committees.
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Chapter 10: New Freedom Initiative Activities explains the Supreme Court’s Olmstead 

Decision and President George W. Bush’s New Freedom Initiative, and ADD’s 

contribution to that initiative.

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

of the various initiatives supported by ADD’s grantees. Appendix B lists contact 

information for all grantees.

Though this report is not a comprehensive reflection of all the support which ADD and its

grantees provide, it is a comprehensive sampling of how these programs work to improve

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

greater independence and self-sufficiency.
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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 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:

 University Centers for Excellence in Developmental Disabilities Education, 

Research, and Service;

 State Councils on Developmental Disabilities; 

 Protection and Advocacy Systems; 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.

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 three programs outlined below.

University Centers for Excellence in Developmental Disabilities Education, 

Research, and Service (UCEDDs): ADD administers a discretionary grant program to 

provide 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, original research, 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.

UCEDDs are uniquely positioned to facilitate the flow of disability-related information 

between the community and the academic world. This network of independent yet 

interlinked Centers represents a tremendous national resource for addressing issues 

relating to persons with disabilities and their families, including:
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• Interdisciplinary preservice, preparation, and continuing education;

• Research;

• Information dissemination; and

• Community services, which include training, technical assistance, direct services and 

model demonstrations.

ADD awards core funds to each UCEDD to support the operation and administration of 

the Center. In turn, UCEDDs are required, to the extent possible, to utilize the ADD 

funds as infrastructure support to leverage additional public and private funds to 

successfully implement the mandated core functions (Section 154(a)(3)(F)). Section

154(a)(3)(C) of the DD Act states the UCEDDs must “use the funds made available

through the grant to supplement, and not supplant, the funds that would otherwise be 

made available for [core function] activities.” Thus, ADD funding is used to support the 

organizational foundation of the UCEDD, which allows the Centers to pursue other 

sources of support to carry out core function activities. UCEDDs will leverage funding 

from a variety of sources to carry out core function activities, including federal, State, 

and local agencies as well as private foundations, donations, and fee for services.

Activities of UCEDDs include: providing interdisciplinary training for professionals, 

researching developmental disabilities, and offering training by and for people with 

developmental disabilities and their families.

In Fiscal Year 2005, ADD had $31.5 million available for grants to 64 UCEDDs. In

Fiscal Year 2006, ADD had $33.2 million available and funded three new UCEDDs.

State Councils on Developmental Disabilities (Councils): Councils, appointed by 

Governors, are composed of individuals with significant disabilities, their parents and 

family members, and representatives of State agencies that provide services to such 

individuals. Council members develop and support local activities and initiatives to 

improve services that enable persons with developmental disabilities to achieve their 

maximum potential and participation in their communities, thereby leading independent 

and fulfilling lives. These efforts focus on systems change, capacity building, and 

advocacy – having discussions, testing ideas, and educating others so that the services 

and supports available to people with developmental disabilities work to their benefit.

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;
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 Providing information to policymakers to increase the opportunities for 

individuals with developmental disabilities;

 Supporting the inclusion of individuals with developmental disabilities in 

communities; and

 Eliminating barriers to full participation in community life.

In Fiscal Years 2005 and 2006, $72.5 million and $71.8 million, respectively, 

was available to support 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 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. 

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.

In Fiscal Year 2005, $38.1 million was available in grants from ADD for the

P&As. In Fiscal Year 2006 the amount was $37.9 million.

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
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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 2005 and 2006, ADD made available $11.5 million and $11.4 

million, respectively, to support PNS discretionary grants.

ADD’s Areas of Emphasis

In order to advance their shared mission, ADD’s grantees may do work in any of eight 

distinct issue areas, referred to as ADD’s areas of emphasis:

• Child Care,

• Education and Early Intervention,

• Health,

• Employment,

• Transportation,

• Housing,

• Recreation, and

• Quality Assurance.

Through programs that target each of these areas of emphasis, the grantees increase the 

ability of individuals with disabilities to achieve their maximum potential and to 

participate fully in their communities, thereby leading independent and fulfilling lives. 

Based on the individual needs of their States, the grantees chose which areas of emphasis 

on which to focus in any given year.

Child Care

One of the first challenges that parents of a child with 

developmental disabilities face is locating accessible, affordable 

child care staffed with appropriately trained professionals. 

Through programs that facilitate research, education, training, and

system change, grantees are improving the ability of child care and early education 

systems to meet the needs of children with disabilities in a nurturing, inclusive 

environment.

Education and Early Intervention

Developmental disabilities, by definition, begin before the age of

22. Therefore, the vast majority of individuals with 

developmental disabilities require assistance with education and
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early intervention issues. All three types of ADD grantees work extensively to provide 

support in these areas.

Each child with developmental disabilities has different circumstances and needs, and 

ADD’s three types of grantees meet those needs in different ways. UCEDDs, as 

mandated by law and by virtue of being affiliated with 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. 

Councils work to educate parents, educators, and the community about inclusive 

education issues. P&As focus substantially on educational issues, and work to ensure 

that students receive an appropriate education in an inclusive setting. Historically, the 

majority 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.

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.

Health

Obtaining quality health care services can present challenges for people 

with developmental disabilities. Individuals may require support when 

filling out insurance forms, filing claims, or making medical decisions. 

They may need assistance in the sometimes overwhelming process of 

securing transportation to and from health care services or finding a 

qualified medical professional with the training to work effectively with 

individuals with disabilities. Through the initiatives of grantees, people 

with developmental disabilities are receiving medical services that meet

their needs, thereby improving not only their health, but the quality of their lives.

Housing

While the classic symbol of the American Dream is to obtain a home of 

one’s own, finding a home can be a significant challenge for individuals 

with disabilities. Safe, independent, and accessible housing provides 

individuals with freedom and self-sufficiency. Independent living opens 

doors and allows individuals to achieve independence and become part

of a community; providing people with developmental disabilities living options other 

than in nursing homes and group settings. ADD encourages programs which give 

individuals with developmental disabilities community-based alternatives to institutional
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living. Grantee programs work to help people find accessible, affordable housing in their 

communities, thereby increasing their independence.

Employment

Participation in the work force is key to participating in society. Locating 

and maintaining employment is one of the most important steps individuals 

can take towards personal and financial independence. Through granteesponsored programs, people with developmental disabilities receive the 

support they need to achieve independence and fulfillment in careers of 

their choice.

Transportation

A person’s ability to find and maintain employment, consult 

his or her choice of a health care professional, choose a place 

to live, and participate in community activities is dependent 

on transportation to and from these locations. 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. Grantees work to increase the availability of accessible transportation, thereby 

allowing individuals with disabilities to get to work, medical appointments, and other 

activities that provide a degree of personal freedom that would not be possible otherwise.

Recreation

People use recreational activities to relieve stress, connect with 

friends, be creative, or escape from their daily lives. For people 

with disabilities, recreation can be an important way to improve 

health and fitness, as well as an opportunity for community 

interaction. Through recreation-focused projects, grantees ensure

that people with developmental disabilities make decisions about their leisure time, and 

pursue their interests with others.

Quality Assurance

Part of ADD’s mission is to promote independence by ensuring 

that individuals with developmental disabilities have access to 

services that allow them to lead full and self-sufficient lives as a 

member of an integrated community. Grantees support this 

mission through programs that allow individuals with disabilities

to participate in recreational and cultural activities, advocate for their personal rights, live

where they choose, and otherwise exercise choice and control over their lives. Grantees
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work to protect the rights of individuals with developmental disabilities, and to improve 

the quality, accessibility, and flexibility of the services available to them. Through these 

efforts, individuals are helped in the short and long term, and 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 grantees.

New Freedom Initiative:

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, Department 

of Labor, and the Department of Transportation.
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Chapter 2: DD Network Collaborative Projects and Activities

The Developmental Disabilities Assistance and Bill of Rights Act (DD Act) requires 

ADD work to ensure that people with developmental disabilities and their families 

receive the services and supports they need and participate in planning and designing 

those services. The DD Act established eight areas of emphasis for ADD programs;

employment, education and early intervention, child care, health, housing, transportation,

recreation, quality assurance, and formal and informal community supports. ADD meets 

the requirements of the DD Act by supporting the following three programs: University 

Centers for Excellence in Developmental Disabilities Education, Research, and 

Development (UCEDDs); State Councils on Developmental Disabilities (Councils); and

Protection and Advocacy Systems (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. The DD Network partners are designed to fit together like the 

pieces of a puzzle; together they create a cohesive net of opportunities and supports that 

ensures that no individual is left behind. Through collaboration, the partners bring their 

unique and complementary roles and capabilities to the table and coordinate their 

resources to achieve common goals and support systems change.

With their respective roles and skills, the DD Network partners may focus on different 

elements of the same goal(s) or different goals, but the collective results they achieve 

contribute directly and positively to the ability of individuals with developmental 

disabilities to live in and contribute to their communities.

ADD grantees individually and as State DD Networks also cooperate with other local, 

State, and national organizations to maximize their ability to provide the varied 

opportunities, services, and supports to individuals with developmental disabilities and 

their families.

Collaboration can take many forms. ADD has shared information about collaboration 

with its grantees. In its strongest form, collaboration encompasses interdependent systems 

and a shared vision. Partners make decisions jointly and initiate strategic planning to 

identify shared goals, outcomes, and resources.

ADD fully supports its grantees in their efforts toward full collaboration, and believes 

that a collaborative network that underwrites opportunities, services, and supports is the 

best way to achieve full independence, inclusion, and support for individuals with 

disabilities in every State.

The programs profiled in the following pages serve as just a few examples of the 

collaborative achievements of DD Networks in Fiscal Years 2005 and 2006.
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In Alaska, the DD Network works together with a variety of stakeholders to increase the 

employment rate of Alaskans with disabilities. One specific example is the development 

and implementation of a statewide benefits planning and assistance system, which 

includes outreach, training and technical assistance, direct service provision and quality 

assurance.

As a direct result of this partnership, the following outcomes were achieved in FY 2005 

and 2006:

• Continued implementation of policy by the Division of Vocational 

Rehabilitation requiring that all vocational rehabilitation consumers on public 

assistance receive benefits analysis and, if needed, benefits counseling;

• Information and referral contacts were made available to 388 individuals;

• Through 43 overview training sessions held across the State, 413 individuals 

with disabilities, family members, service providers, State agency staff, advocates 

and school district personnel had access to appropriate training;

• Skills gained by training participants indirectly benefited 4,142 individuals 

with disabilities;

• 40 people were certified as benefits counselors; and

• A cadre of 25 active benefits counselors is available statewide.

In New Jersey, the DD Network formed the Cultural Competence Collaborative in order 

to enhance the capacity of disability services to address the increasing cultural diversity 

in the State. The Network developed a series of Cultural Awareness Days (based on the 

model of The Boggs Center DD Lecture Series), planned in collaboration with leaders 

from various ethnic communities, to ask them to teach the disability community about 

their cultural communities in New Jersey. The Network also formed the Latinos and 

Disabilities Planning Task Force. The Task Force created a Latinos and Disabilities 

listserv and sponsored several conferences.

In Oklahoma, the DD Network grew concerned about the ability of individuals with 

disabilities to respond quickly and effectively in the face of an unexpected disaster. 

Hurricanes Katrina and Rita, as well as wildfires in Oklahoma, highlighted the urgent 

need for improved disaster preparedness for individuals with disabilities. As a result, the 

DD Network, operating together as the Redlands Partners, developed a plan to increase 

the awareness of community members with disabilities and to distribute needed disaster 

preparedness information. Additionally, the Redlands Partners, on an ongoing basis, 

provide and encourage others to disseminate information to community resource people 

and first responders who serve as points of contact and assistance for people with 

disabilities in Oklahoma.
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The Texas Community Integration Project (TCIP) is a collaborative project of the Texas 

DD Network that assists people with disabilities of all ages. TCIP works to help move 

people with disabilities out of institutions, such as nursing facilities or State schools, and 

into homes in the community. The project demonstrates how people who wish to live in 

the community can do so safely and successfully, and has increased the numbers of 

individuals who actually move. In addition, project staff facilitate improvements in the 

process through which people living in institutions can access community support 

services. Private and governmental entities recognize the expertise of project staff and 

have requested their assistance when nursing homes have closed.

Originally a project working only in the San Antonio area, the Council and its DD 

Network expanded the project to five additional sites: Houston, Waco/Temple, Corpus 

Christi, El Paso, and Dallas. In Fiscal Year 2006, the project provided extensive supports 

that allowed 49 people to move from congregate settings to their own homes. In

addition, 150 other people received the information and support that helped them move

from a nursing home to a community home.

In Kentucky, the DD Network collaborated on various projects over the past several 

years. This collaboration led the three ADD grantees to develop a joint brochure and web 

site (www.kyddnetwork.org). They not only share their collaboration but demonstrate

the link among the three grantees and how they support each other on their mutual goals.

The three grantees also put out a joint newsletter.

One of the many collaborative initiatives undertaken by the Kentucky DD Network is the

Preservice Health Training Project. Obtaining quality health care services for 

themselves or their family can present difficulties for some people with developmental 

disabilities, and finding a talented medical professional who is trained to work with 

people with disabilities can often be a challenge. Therefore, the DD Network developed 

a collaborative project to help overcome some of these challenges by expanding the pool 

of trained professionals and improving health care for people with developmental 

disabilities.

The DD Network is formatting cross-disciplinary training modules that can be 

incorporated into existing course work in medicine, allied health, and nursing programs 

throughout Kentucky. A core team of medical and nursing school faculty as well as 

individuals with disabilities and their family members are helping to design a set of

‘virtual patients’ modules for medical students in Kentucky. The web-based, interactive 

modules feature virtual patients with developmental disabilities. Students being 

instructed through these modules are required to choose how best to provide care to the

virtual patients. In addition to the modules, the faculty at the universities receive manuals 

and other materials that they can use in the classroom.

This project has drawn national attention, resulting in several presentations which have 

led at least seven universities outside of the State of Kentucky to express an interest in 

using the Preservice Health Training Modules.
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The Building Leadership Series (BLS) is a collaborative workshop project of the Indiana 

Developmental Disabilities Network. In FY 2006, 20 self-advocates completed three two 

day workshops over a three month period. Self-advocates are people with

developmental disabilities who advocate for themselves and teach others to do the same. 

All workshops are co-trained with staff from the DD Network and self-advocates. The 

training includes a mix of interactive activities, video, discussion, role play and lecture. 

Workbooks accompany each topical area. Selected participants are able to receive a 

workshop attendance stipend, meals and overnight lodging. Support staff, where needed, 

also receive compensation, meals and lodging. Participants have commented on how 

much they learned and committed to personal action steps upon arriving back home.

New friendships developed and personal growth was evident for all participants.

In Georgia, the three grantees joined forces to create the Children’s Freedom Initiative. 

The goal of this initiative is that no child in Georgia will have to live in an institution. 

The initiative is centered on the belief that children belong with loving families and 

complies with the Supreme Court’s Olmstead decision which held that Title II of the 

Americans with Disabilities Act (ADA) requires States, whenever possible, to place 

individuals with mental disabilities in community settings rather than in institutions.

Currently, it is estimated that 140 – 150 of Georgia’s children are living in nursing homes 

and State hospitals. The Georgia DD Network is taking steps to change that.

“John” was one of the many children helped by the Children’s Freedom Initiative.

John loves country music, fireworks, go-cart rides, and Veggie Tales videos. By 2005, 

however, John had been living in an institution for six years- half of his young life. 

Fireworks and go-carts, along with other favorite family activities, were only available on 

John’s occasional visits home. Music and videos were played in his room in a nursing 

home where most of the other residents were senior citizens. John loved being outside, 

but did not often get the opportunity to go out. He spent his days lying in bed, or 

occasionally sitting in a chair in the nursing home hallway.

John’s mother wanted to bring him home. However, she couldn’t afford the services that 

John would need. The State would pay for John’s nursing home care, but not for the 

supports that would allow him to receive the care he needed to live his life at home with 

his family.

As part of the Children’s Freedom Initiative, the DD Network worked cooperatively to 

bring together a diverse group of stakeholders at a summit to “ensure that children who 

live in facilities are given the chance to live with permanent, loving families” and to 

“imagine a future where no child will live in an institution.”

During the 2005 legislative session of the General Assembly, House Resolution 633 was 

introduced to look into this issue. This resolution resulted in the creation of an oversight 

committee. The non-legislative members of the committee are persons with disabilities, 

family members, and representatives from the DD Network.

In conjunction with this project, the P&A and the Council jointly funded "Longing For

Home," the powerful video/DVD about the initiative. In addition, UCEDD-affiliated
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graduate student Katie Bailey interviewed six families whose children were or are now 

institutionalized in Georgia and wrote stories for a publication called From Loving Arms. 

UCEDD staff disseminated over 1000 copies of this publication. A picture of John was 

featured on the cover.

The Georgia legislature approved funds to allow all of the children in Georgia's stateadministered institutions to go home. Next year, the DD Network will work with the 

legislature to tackle the issue of children in private facilities & nursing homes.

With the help of the Children’s Freedom Initiative and the P&A’s advocacy efforts, John 

at last went home to live with his family in February 2006. He has a swing in his 

backyard, and is receiving good support from his school. Through encouraging

flexibility in the law, and by working together in a manner that capitalized on all their 

strengths, the DD Network was able to improve the lives of families across the State.
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Chapter 3: University Centers for Excellence in Developmental

Disabilities Education, Research, and Service (UCEDDs):

University Centers for Excellence in Developmental Disabilities (UCEDDs) are uniquely 

positioned to facilitate the flow of disability-related information between the community 

and the academic world. The network of independent yet interlinked UCEDDs

represents a tremendous national resource for addressing issues relating to persons with 

disabilities and their families.

There is at least one UCEDD program in each State and Territory, with some States 

having multiple centers. UCEDDs engage in a variety of activities and serve as liaisons 

between academic environments and service delivery systems, positively affecting the 

lives of individuals with developmental disabilities and their families. This is 

accomplished through the implementation of four core functions that frame the UCEDD 

program:

• Interdisciplinary presence, preparation, and continuing education;

• Research;

• Information dissemination; and

• Community services, which include training, technical assistance, direct services, 

and model demonstrations.

Activities of UCEDDs include: providing interdisciplinary training for professionals; 

researching developmental disabilities; and offering training by and for people with 

developmental disabilities and their families.

The following is just a small sample of UCEDD activities in Fiscal Years 2005 and 2006, 

framed around ADD’s areas of emphasis: child care, education and early intervention, 

health, employment, transportation, housing, recreation, and quality assurance. Because 

UCEDDs only recently initiated their current system of data collection, comparative 

statistics are not available for Fiscal Year 2005.

Child Care

Outcome Statement: In Fiscal Year 2006, 44,924 people participated in UCEDD projects 

that allow the families of children with developmental disabilities to have access to 

appropriate, accessible child care services.

The Arkansas UCEDD supports the Welcome the Children project in order to ensure 

that quality child care programs are available to Spanish-speaking families affected by 

disabilities. The Spanish-speaking community in Arkansas has grown rapidly in recent
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years, and child care providers, early childhood educators, and other professionals have 

been greatly affected by this population growth. However, most child care programs 

have received little training to assist them in adapting their services to work more 

effectively with Spanish-speaking children and their families.

Welcome the Children uses proven materials to provide training to early childhood 

professionals and others who work with Spanish-speaking children, with and without 

disabilities. Part of the projects goal is to train child care workers to recognize early

signs of developmental disabilities, so that appropriate early intervention can begin while 

the child is young. Two seven-hour training modules have been developed. Module 1, 

Cultural Diversity, covers recognition and acceptance of cultural and linguistic diversity. 

Module 2, Second Language Development and Assessment in Early Childhood, covers

the first language and second language acquisition process for young children, how to

assess children for language difference vs. language delay, and strategies for working 

with families to reinforce classroom activities.

To ensure that these training materials will be available statewide, Welcome the Children 

is developing the capacity of local trainers to provide these training sessions to 

professionals in early childhood programs. This is being accomplished through the 

development of community teams that consist of volunteer local trainers and other 

individuals who provide expertise and ideas to assist the trainers.

The Indiana UCEDD supports the Healthy Child Care Indiana project, a partnership of 

over 15 entities working to ensure the availability of safe and healthy child care and 

education for all children. Indiana has experienced the highest incidence of death in the 

U.S. for children attending child care and education programs. Goals of the Partnership 

include: developing a system to increase the effectiveness of informal professional 

development activities, development and provision of a statewide child care health 

consultant project, and working to increase the inclusion of the National Health and

Safety Standards and other nationally recognized standards in child care and education 

rules and regulations.

Resources developed by the Partnership include a Health Resources guide to programs 

serving young children and their families, a child care health consultant training manual 

and training program, a State-wide web-based calendar of training events for early care 

and education professionals, a report that compares Indiana's child care rules with the 

National Health and Safety Standards, a report about the provision of professional 

development for the early care and education field, and a report on providers interest and 

need for child care health consultation.
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Education and Early Intervention

Outcome Statement: In Fiscal Year 2006, 371,720 people participated in UCEDD projects 

supporting the increased availability of inclusive and appropriate education for people with 

developmental disabilities.

ADD’s grantees work to ensure that developmental disabilities are identified as early as 

possible in a child’s life, thereby ensuring that treatment and services begin early.

The South Dakota UCEDD organizes early intervention services on the South Dakota 

Native American Reservations. This creates local access to comprehensive and culturally 

appropriate systems of health and developmental services to identify developmental 

concerns from birth through five years of age and to provide linkage to appropriate 

services.

The UCEDD has broken traditional barriers by taking the services to the families on the 

reservations instead of expecting these families to travel long distances to have their 

children evaluated for developmental delays.

Programs like South Dakota’s are crucial because they give a child a head start. Once a 

child is actually diagnosed with a developmental disability, ADD’s grantees work to 

ensure that the child receives a high-quality inclusive education. 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 become an active, valued 

member of their communities throughout their lives.

Historically, when being educated, children and young adults with developmental 

disabilities were segregated from their peers who were not disabled. 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 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.
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The Vermont UCEDD partnered with the Vermont State Department of Education to 

address the use of paraprofessionals in an integrated educational setting. The 

Paraeducator Support Demonstration Project is designed to develop, implement, and 

evaluate a model for the effective use of paraprofessionals to support students with 

disabilities in 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 across the Nation, in any 

classroom from preschool through high school.

Often, one of the largest gaps in educational services provided to students with

developmental disabilities is in the transition from the school environment into the 

community and the working world. Montana’s UCEDD implemented a project designed 

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, an approach that better matches students to jobs, 

increasing job satisfaction and retention while reducing the cost and duration of outside 

supports.

Health

Outcome Statement: In Fiscal Year 2006, 524,703 people participated in UCEDD projects 

that allowed individuals with developmental disabilities to acquire the knowledge and skills 

to gain access to appropriate health services.

The Oregon UCEDD works to combat violence against women with disabilities, which 

has been identified as a serious health issue. In addition to domestic violence issues, 

women with disabilities face an increased risk for abuse by caregivers or personal 

assistants. Unfortunately, this problem has remained well-hidden, and many women with 

disabilities are unable to access the resources they need to end violence. The goals of the 

Oregon Violence Against Women with Disabilities Technical Assistance Center 

include increasing awareness about violence against women with disabilities and building 

the capacities of various community organizations to provide an accessible, coordinated, 

community response to violence against women with disabilities.

Key elements include:

• An Advisory Council that brings together leaders from various organizations to 

shape a response and oversee the activities of the Center;

• On-site peer mentor-based training and technical assistance to facilitate strategic 

planning;
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• Flexible “mini-grant” funding to support the education/training needs of rural 

communities;

• A clearinghouse of resources related to ending violence against women with 

disabilities, including video tapes, public service announcements, curriculum, and 

protocols for identifying and reporting abuse; and

• Comprehensive dissemination of information and materials through statewide 

video conferences, an interactive web site, and a State conference on ending 

violence against women with disabilities.

Housing

Outcome Statement: In Fiscal Year 2006, 524,703 people participated in UCEDD projects 

that increased their ability to live where and with whom they chose.

The New Hampshire UCEDD partnered with a national organization on inclusion to 

ensure that individuals with disabilities have access to “accessible” community-based 

housing. The Center for Housing and New Community Economics (CHANCE) is 

designed to improve and increase access to integrated, affordable, and accessible housing 

coordinated with, but separate from, personal assistance and supportive services. 

CHANCE's purpose is to offer alternatives to approaches that segregate, congregate, and 

control people with disabilities.

The UCEDD works in all aspects of CHANCE in partnership with ADAPT, a national 

organization that focuses on promoting services in the community for people with 

disabilities.

The development of community housing and services for people with disabilities has 

been a major national policy direction for the past 20 years. Unfortunately, the 

administrative structures supporting community services typically promote congregate 

and agency controlled approaches to housing and personal assistance services. While the

number of people living in institutions and large facilities has decreased, the vast majority

of individuals residing "in the community" live in residences owned and controlled by 

someone else.

Through this initiative, the UCEDD collaborates with a broad coalition of people and 

organizations concerned with housing, economics, personal assistance services, and 

advocacy. The coalition includes people with disabilities and their families, as well as 

people from Federal, State, and local agencies. Collaboration between the private and 

public sectors is encouraged and facilitated.
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Employment

Outcome Statement: In Fiscal Year 2006, 113,195 people participated in UCEDD projects 

aimed at helping individuals with developmental disabilities acquire, retain, or advance in 

employment in integrated settings in a community.

The Alaska UCEDD supports the Self-Employment Training Grant program, designed 

to help individuals with developmental disabilities find success and fulfillment in selfemployment. Individuals who are under-employed or unemployed frequently express a 

desire to be self-employed; yet they are often discouraged and dismissed by traditional 

funding sources. Risk is a major factor that prevents people from pursuing selfemployment. Common barriers include:

• Counselors, caseworkers, and other service providers who tend to be unfamiliar 

with entrepreneurship and sources of business assistance;

• Local administration and management issues, such as high worker caseloads, 

limited awareness on the part of caseworkers, and the need for additional 

caseworker training; and

• A 'work first' philosophy which discourages participation in any activity that 

potentially delays employment entry.

Self-employment can be of particular value as an employment option when individuals 

have recurring illnesses, transportation issues, and difficulty with supervisory interactions 

or working at a particular time of the day. Self-employment, particularly home based 

micro-enterprises, offers more flexibility and autonomy.

The Alaska program develops self-employment training curriculum and materials for 

dissemination to Job Centers, One Stops, local and State boards, and consumers. The 

program also increases Job Center and One-Stop capacity to utilize self-employment as a 

Statewide option for consumers.

The Illinois UCEDD created the Partner for Inclusive Employment (P.I.E.) Coalition 

to address the 70 percent unemployment rate among people with disabilities. P.I.E. 

coalition members come from government agencies, non-profit groups, advocacy 

organizations, and corporate entities. The focus of this grass-roots effort is to develop 

and implement an industry-friendly protocol for people with disabilities within the job 

market. The P.I.E. model is a Job-Match Fair where job-seekers and employers are both 

pre-screened, which promotes successful matches between the two. The program was 

nominated as one of the finalist for the Midwest region's Council of State Governments' 

Innovations Award.

In Minnesota, the UCEDD is increasing literacy in order to enhance employment 

opportunities for American Indians with developmental disabilities. The Literacy as the
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Path to Employment (LPE) project is a comprehensive and collaborative model to 

improve the literacy levels, future employment, and earnings of American Indian adults 

with disabilities. The project seeks to measure the effectiveness of implementing the 

Wilson Reading System (WRS), a proven curriculum for adults with disabilities, within 

the context of Minnesota’s American Indian communities. The ultimate goal is that of 

empirically examining the impact of WRS in improving the literacy and employment 

outcomes of American Indian adults with disabilities.

The project works directly with the American Indian communities to ensure the cultural 

appropriateness of strategies and approaches used. The project team achieves success 

by:

• Incorporating American Indian cultural perspectives within the implementation of 

the WRS;

• Providing extensive training and technical assistance to staff on the WRS program;

• Employing new and innovative strategies to engage adult American Indians in 

improving their literacy skills to access, secure, and maintain successful 

employment;

• Developing approaches of integrating WRS into current literacy programs;

• Researching, in collaboration with the Federal contractor, the effectiveness of the 

WRS system and its impact on improving the employment outcomes of American 

Indians with disabilities;

• Systematically conveying the importance and value of client literacy development 

through workshops, state/regional meetings, and informational materials; and

• Disseminating project information and results to Minnesota’s Workforce Centers, 

high schools, adult and postsecondary education programs, and American Indian 

community organizations.

Transportation

Outcome Statement: In Fiscal Year 2006, 8,500 people participated in UCEDD projects 

designed to increase the capacity for inclusion of people with developmental disabilities in 

community activities, public events, and social gatherings.

The State of Connecticut is committed to designing and implementing a State Action 

Plan for responsive, comprehensive, coordinated community transportation systems for 

people with low income, older adults, and people with disabilities. To be truly
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successful, a transportation coordination initiative must take into account the needs of 

those who use the system. The Connecticut UCEED works with transportation partners 

to ensure that the interests of people with disabilities are represented in the action plan. 

The UCEDD serves a pivotal role in facilitating information gathering and developing 

consensus around transportation priorities. The UCEDD will:

• Support a series of Regional Forums with disabled consumers of transportation 

services;

• Implement a day-long Transportation Institute with consumers, State legislators, 

State policy makers and State agency representatives; and

• Assist with the development of Technical Advisory Committees that will help the 

State in the development and implementation of a State Human Services 

Transportation Action Plan.

The Alabama UCEDD, in partnership with the DD Network, has identified accessible, 

reliable transportation as one of the greatest needs for people with disabilities in the State. 

The Van Fair project addresses this need not only by providing transportation, but also

by providing specific training in self-advocacy. The goals of this project are as follows:

• To provide accessible transportation to work, appointments, school, shopping, 

recreation, and other needs for people with disabilities living within a 50 mile radius 

of the Civitan International Research Center;

• To provide Statewide training to individuals with disabilities, their family members, 

policy-makers, and others regarding the need for accessible transportation in 

Alabama, barriers to accessible transportation, and solutions to the barriers; and

• To collect and disseminate information regarding the use of accessible transportation 

through the project, demographics of the users, the numbers of specific requests for 

different needs.

Activities include scheduling rides on a first-come, first-served basis; providing 

transportation and advocacy training statewide to a total of twelve faith communities, 

disability agencies and organizations, and community and volunteer services; and to 

develop a brief survey containing information regarding the utilization of this project, the 

demographics of the users, and other significant information that can be used in planning 

and systems changes.

The expected outcomes of this project include, but are not limited to: greater inclusion in 

the community for people with disabilities; reliable, accessible transportation for people 

with disabilities living in Central Alabama; more competency in advocating for better 

statewide accessible transportation; and current, specific data regarding transportation 

needs and solutions, to be disseminated to legislators, policy-makers and consumers, in
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an effort to provide better planning, funding, and implementation of statewide systems 

changes in accessible transportation.

Recreation

Outcome Statement: In Fiscal Year 2006, 8,939 people participated in UCEDD projects

that helped to increase the capacity for inclusion of people with developmental disabilities in 

community activities, public events, and social gatherings.

The Tennessee UCEDD partnered with Full Circle Art, a group of independent artists, to 

hold inclusive workshops for youth and adults. Together they collaborated to create art, 

which culminated in an exhibit “Common Ground.” The workshops included drumming, 

movement, and dance.

Additionally, for several summers, the UCEDD has collaborated with national and local 

disability organizations to hold day camps focused on building specific skills, including 

recreation and art. The Frist Center for the Visual Arts has been an annual partner for 

Explorers Unlimited Academic Camp for students with Down Syndrome. The Frist 

Education staff provides art instruction, which each year is related to a major exhibit and 

culminates in a field trip to the Frist Center to view the exhibit.

Music instruction also has been incorporated into camp curricula, taking advantage of 

Vanderbilt’s Blair School of Music and Nashville’s extensive music resources. Teens and 

young adults with Williams Syndrome who attend the annual Music Camp work with 

professional songwriters and musicians to write and record an original song, which is 

performed live at the Grand Ole Opry.

Quality Assurance

Outcome Statement: In Fiscal Year 2005, 217,492 people participated in UCEDD projects 

that helped them to be included in their communities, to live free from abuse and neglect, 

and to make choices for their lives.

Quality assurance activities have many purposes, one of which is to increase the 

community inclusion of individuals with developmental disabilities. The Hawaii 

UCEDD sponsors the Alliance for Inclusion Advancement-Hawaii (AIA-HI), the 

purpose of which is to engage persons with disabilities age 14 and over in service and 

volunteerism. AIA-HI has created two Local Inclusion Collaborative Networks (LINCs) 

on O’ahu and the Big Island of Hawaii to facilitate this development.

AIA-HI has worked for several years with Martin, who has cerebral palsy. After years of
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volunteering in various capacities, for many organizations, Martin has become an 

employee at the local Center for Independent Living and was recently elected President 

of the first advocacy committee for those with developmental disabilities, called the Self 

Advocacy Advisory Committee (SAAC).

The Delaware UCEDD aims to facilitate community inclusion for people with 

disabilities through a program called Community Connectors. Since its inception in

2003, Community Connectors has partnered with adults with disabilities, helping them

pursue personal interests and become involved in their communities. Twenty-five people 

participated in the program during Fiscal Years 2005 and 2006.

The project’s main objectives are three-fold: to provide support to help individuals 

become an active community participant; to support participants in identifying, 

developing, and attaining personal life goals; and to monitor and evaluate the progress of 

life enrichment activities for program participants.

Community Connectors is built on two programs: the Individual Program and the Group 

Program. With support from a staff of graduate and undergraduate students from the 

University of Delaware, participants in the Individual Program create personal goals, 

make plans to achieve those goals, seek out opportunities of interest, and engage in 

activities. They then meet with staff two to four times per month to share progress and 

successes, or brainstorm solutions to challenges they may have encountered.

For people who want a less structured experience, the Group Program provides a 

wonderful opportunity to socialize, build friendships, and gain new experiences. Twice a 

month, adults with and without disabilities join together at a variety of events – from 

watching movies and football games to volunteering and pottery classes.
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Chapter 4: State Councils on Developmental Disabilities

State Councils on Developmental Disabilities are appointed by governors and funded by 

ADD to promote and build advocacy, systems change, and capacity building in the eight 

areas of emphasis so that individuals with developmental disabilities can lead full lives in 

their communities. Councils advocate for the establishment of public policy that helps 

individuals with developmental disabilities to gain increased control over their lives.

Each of the 55 Councils - one in each State, the District of Columbia, and four U.S. 

Territories - work to increase the independence, productivity, and community integration 

of all people with developmental disabilities.

Council members include individuals with developmental disabilities, family members, 

advocates, and State agency representatives. This diverse membership uniquely positions 

the Council as an objective observer and analyzer of State services, trends, and resources. 

From these observations, Councils develop a five-year State Plan designed to show new 

ways to improve the delivery of services so that individuals with developmental 

disabilities have the opportunity to exercise their individual rights and obtain their 

personal goals. In order to carry out the State Plan and their respective missions,

Councils utilize varied activities, including:

• Involving and supporting people with disabilities and family members in leadership 

roles;

• Educating communities to welcome individuals with developmental disabilities;

• Informing policymakers about disability issues;

• Funding projects to show new ways for people with disabilities to work, play, and 

learn; and

• Seeking information from the public and from State and national sources.

By partnering with individuals with developmental disabilities and their families, as well 

as with organizations that pursue similar goals, Councils build coalitions that effectively 

change public policy and service delivery. Thus, Councils are valued as collaborators 

and catalysts for innovative ideas that positively impact the lives of people with 

developmental disabilities.

The following is just a small sample of Council activities in Fiscal Years 2005 and 2006, 

framed around ADD’s areas of emphasis: child care, education, health, employment, 

transportation, housing, recreation, and quality assurance.
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Child Care

Outcome Statement: Due to the work of Councils in Fiscal Year 2005, 3,092 families of 

children with developmental disabilities benefited from expanded availability of affordable, 

appropriate child care with accessible facilities. In Fiscal Year 2006, 2,636 people were 

reached.

In Louisiana, the Council funded Partnerships for All Children Together (Project 

PACT). The project was designed to enhance and expand the capacity of child care 

providers to support and include young children with disabilities within community child 

care environments in the Greater New Orleans area. Project PACT uses a communitybuilding process designed to establish and maintain long-term relationships across child 

care providers and administrators, early intervention specialists, early intervention system 

administrators, and families.

Training modules were developed and tested in the first year of the project and updated 

as necessary. General knowledge workshops are offered free to any interested family 

members, child and family care providers, and early intervention specialists. The project 

also provides long-term, intensive support to a selected group of child care providers that 

have enrolled children with disabilities. Project PACT coordinates on-site follow-up to

support families, child care providers, and early intervention specialists in addressing the 

individual needs of young children with disabilities (e.g., adapting activities and 

materials, embedding individual instructional goals into ongoing activities, and using 

naturalistic teaching strategies).

Following Hurricane Katrina in 2005, several of the child care centers involved in the 

project were no longer able to operate. However, the project continued with the 

remaining centers and added new ones. In 2006, Project PACT began sharing the 

curriculum developed by the project and providing support to other organizations 

interested in replicating this process in other areas of the State.

Education and Early Intervention

Outcome Statement: In Fiscal Year 2005, Councils helped to enhance the knowledge, 

capabilities, and self-advocacy skills of 19,803 students with developmental disabilities and 

their families, in order to ensure the schools they attend are providing inclusive, appropriate, 

and local educational opportunities. In Fiscal Year 2006, 33,003 students were reached.

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. Placing all students together teaches understanding and acceptance to 

younger generations, which in turn may build a foundation for community inclusion in 

the future.
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In order to encourage and promote proactive and innovative inclusive education 

strategies, the New Jersey Council on Developmental Disabilities sponsors a 

Fellowship Program in Inclusive Education. The Fellowship Program was created to 

encourage, acknowledge, and expand promising practices in including children with 

disabilities in all aspects of the public education system. Any individual or group who 

encourages the inclusion of students with disabilities in all areas of school life is

eligible. Fellows must embrace the concept that children with disabilities have the right 

to be educated in the least restrictive environment. They must be committed to making 

that concept a reality for their students. Nominees must demonstrate a commitment to 

the identified practice or concept. The utilization of fellowship awards must be 

explicitly described.

In North Dakota, the Council provided funding for a project that helped families to 

provide information and one-on-one emotional support to other parents raising children 

with disabilities or special health care needs. This network also provided training to 

medical, education, and other professionals as well as to child care providers on issues 

pertaining to raising children with special needs. 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.

Health

Outcome Statement: In Fiscal Year 2005, Councils helped 25,180 individuals with 

developmental disabilities by educating health professionals on the needs of people with 

developmental disabilities, teaching self advocacy, and encouraging facility accessibility 

conversions. In Fiscal Year 2006, 12,271 individuals were reached.

The Texas Council funded several projects that allowed parents to train pediatric 

residents on the delivery of long-term care to children with chronic illness or disabilities. 

The Houston Project trained 43 pediatric residents and 13 new parent teachers. In San 

Antonio, 25 pediatric residents and two parent teachers were trained. The Driscoll 

Children’s Hospital in Corpus Christi trained 46 residents in all components of the 

program, presented information on the program to a medical school in Dallas, and is also 

training dental assistants.

Employment

Outcome Statement: In Fiscal Year 2005, Councils expanded the availability of job 

training, equal employment information, inclusive work environments, and job placement 

for 3,838 people with developmental disabilities. In Fiscal Year 2006, Councils reached

4,582 people with developmental disabilities.
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The Nevada Council sponsors the Nevada Business Leadership Network (BLN), an 

employer-led initiative working to establish quality employment opportunities for 

Nevada citizens with developmental disabilities. The BLN increases employer 

awareness, appreciation of, responsiveness to, and hiring of people with disabilities by:

• Facilitating employer leadership development and expanding its steering committee 

comprised of area employers;

• Conducting public education activities (mentoring and training for both employers 

and job seekers) to improve attitudes/competencies;

• Providing technical support to individual employers to improve recruitment efforts 

and hiring results; and

• Partnering with community rehabilitation providers and school districts.

The Tennessee Employment Consortium (TEC) was established through a Challenge 

Grant from the Council. TEC is comprised of stakeholders from across the State, and 

includes family members, employment services providers, the Tennessee Division of 

Rehabilitation Services, the University of Tennessee Center on Disability and 

Employment, The Arc of Tennessee, People First of Tennessee, and the Tennessee 

Microboard Association.

The work of the TEC had specific success related to the number of individuals who 

achieved community employment through Consortium activities. In Fiscal yeas 2005 and

2006, TEC activities helped 63 individuals to find meaningful jobs in their communities.

The training implemented by TEC for job coaches was also productive. 

Training was implemented on several fronts with positive outcomes:

• Job Coach Training (JCT) was provided to 1,219 job coaches

• Thirty-five trainers received Job Coach Train-the-Trainer training and were approved 

to deliver JCT

• Twenty-five new job coaches were hired

• Eighty-eight job developers received Job Development Training

• More than160 people participated in Project Income, a training targeted to people 

with disabilities and family members about employment and the benefits of 

employment
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Transportation

Outcome Statement: In Fiscal Year 2005, Councils increased flexible, affordable 

transportation options for 15,766 individuals with developmental disabilities, increasing 

their personal freedom. In Fiscal Year 2006, Councils reached 14,642 individuals with

developmental disabilities.

In Nebraska, the Council worked in collaboration with the State DD Network to improve 

transportation options for individuals with developmental disabilities. Transportation had 

been identified by all grantees as a high priority, as Nebraska is a very rural State with

few communities having access to public transportation. The concern was not only about 

access, but also about the rising cost of transportation services and the lack of flexibility 

for consumers. In addition, statutes required that all transportation paid for by Nebraska 

Health and Human Services must be provided by commercial carriers, such as taxi 

companies or bus services.

Therefore, the Council funded the Munroe-Meyer Institute (Nebraska’s UCEDD) to hold 

several statewide video-conferences on Transportation: Exploring Solutions. These 

conferences included the major stakeholders in the State such as the Public Service 

Commission, which regulates transportation; the Department of Roads, which oversees 

public transportation systems; the Health and Human Services System, which is the payer 

of much of the transportation for people with disabilities; and consumers and advocates. 

These conferences provided opportunities for the parties to speak to each other and 

discuss perceived barriers. The DD Network decided to approach a State senator to 

discuss their concerns with him including any needed change in State law which might 

improve transportation services. Representatives of the Council, the P&A, and the 

UCEDD developed a survey which identified a number of concerns including the lack of 

choice by individuals because of the requirement that they must use a taxi for their 

transportation. Based upon these concerns, the DD Network, along with other disability 

advocates, agreed to try to make a small change to the current statute by adding language 

to allow non-legally responsible relatives to be reimbursed for eligible transportation 

services.

Recognizing that there would be vocal opposition by the taxi lobby, advocates came 

together to organize strong testimony at the bill hearing. The senators were so impressed 

by the testimony that they amended the bill to include not only family but friends as well 

to be potential transportation providers. The bill was passed. Representatives from all 

three Network agencies were present when the Governor signed the bill into law.

This change will give individuals with disabilities more control over who provides them 

transportation. It will also result in cost savings to programs including Medicaid. State 

senators were able to see that disability advocates were not just asking for more funding 

but also coming up with solutions that give individuals more choice as well as result in a 

cost savings.
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The Pennsylvania Council developed and supported the Persons with Disabilities 

Transportation Program, which provides transportation for individuals with 

disabilities, a service which is particularly important in rural areas where other 

transportation options are minimal. Nearly 9,000 individuals have registered for the 

service and more than 400,000 trips have been taken. Forty-five percent of all trips are 

made for work. Forty-seven percent of regular users were able to get or keep a job 

because the transportation program was available.

Housing

Outcome Statement: In Fiscal Year 2005, Councils made housing more accessible for

2,400 people with developmental disabilities by participating in deinstitutionalization 

efforts, and by ensuring that those with independence can continue to maintain it. In Fiscal 

Year 2006, Councils reached 1,557 individuals with developmental disabilities.

The Virginia Council’s Transportation and Housing Alliance (THA) grant to the 

Thomas Jefferson Planning District Commission brought stakeholders and advocates 

together with experts in planning, housing, and transportation. Alliance members 

developed the THA Toolkit, which localities can use to assess needs and plan 

transportation and housing for people with disabilities in coordination with land use. The 

toolkit provides localities and Planning Districts with new opportunities for coordinated 

needs-based planning and growth. The use of the toolkit is being promoted by the 

Virginia General Assembly's Disability Commission as a means by which localities can 

meet comprehensive planning requirements specified in the Code of Virginia §15.2-

2223. Revisions to this Code section, which will be effective in July, 2007, include a 

requirement that localities determine and plan for the current and future needs of 

residents who are elderly or are people with disabilities. The toolkit is also being tested 

by the Virginia Housing and Development Authority as a possible new market study 

assessment, which is required of developers that apply for low income housing tax 

credits.

In the District of Columbia, the Council has taken steps to inform and involve the 

community regarding accessible housing. Two community forums were held as part of 

the D.C. Council Quality Assurance Advocacy initiative. Leadership representatives 

from the DC Housing Authority, DC Department of Housing & Community 

Development, DC Housing Finance Agency, University Legal Services, DC Office on 

Human Rights, Affordable Housing Alliance, and a private developer served as panelists 

and addressed over 124 individuals regarding the process for utilizing housing services 

and alternatives. Discussions focused on accessible and affordable housing and specific 

questions related to housing and how to make appointments for follow-up if necessary. 

As a result of these forums, one self advocate with developmental disabilities was able to 

get the “right” resources communicating to bring to fruition the installation of a much 

needed elevator in his home.
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The Wisconsin Council supported the development of Movin' Out, originally a group of 

families who wanted home ownership for their sons and daughters. Since 1997, Movin’ 

Out has helped more than 700 people with disabilities purchase or renovate homes for 

accessibility, safety and home maintenance needs. “Sue,” met with a Movin’ Out 

Housing Counselor to develop a plan. The first step was figuring out how she could save

money without jeopardizing her SSI and Medicaid benefits. Movin’ Out referred Sue and 

her family to an attorney who helped them to establish a trust to protect her income. Sue 

worked hard for three years and made sacrifices in order to save enough money for a

down payment. Whenever her friends went out for a movie, Sue stayed home and put 

away the amount of money she would have spent. Sue and her counselor met with a 

mortgage lender and although she qualified for three down payment assistance programs, 

it still wasn’t enough for a down payment. Finally, working with the city of Madison, 

Sue traded her Section 8 rent voucher for a voucher that could be used to offset her 

mortgage. Sue located a condo in a location that works well for her, and is a proud new 

homeowner.

Recreation

Outcome Statement: In Fiscal Year 2005, Councils facilitated the inclusion and 

participation of 8,305 individuals with disabilities in events or social gatherings they chose. 

In Fiscal Year 2006, Councils assisted 9,167 individuals to participate in recreation.

Access to community recreational opportunities for people with developmental 

disabilities continues to be a priority for the Idaho Council on Developmental 

Disabilities. Council funds were awarded to a project to develop Idaho’s first universally 

accessible playground. Children of all abilities and ages, as well as adults, have been 

playing on “The Grand Voyage” at Adventure Island Playground. Located in 

Meridian’s Settler’s Park just outside of Boise, Adventure Island makes available 

exploratory and physical play opportunities. In its present state, the playground is 

approximately 75 percent complete while a community volunteer planning team

continues to raise the remaining necessary funds.

SPLORE, a Salt Lake City, Utah, nonprofit organization, was awarded a grant by the 

Utah Developmental Disabilities Council for the second year of a pilot program 

providing inclusive outdoor recreation experiences to children with disabilities in Utah 

elementary schools. The pilot program, called the Experience Your Abilities Program, 

creates opportunities for elementary age students with disabilities to develop social 

relationships with their peers without disabilities by participating in inclusive outdoor 

recreation activities together.

The Experience Your Abilities Program helps the public school system to provide a 

positive educational experience, both academically and socially, to students of all 

abilities. The program opens the door for inclusive social interactions between students 

with disabilities and students without disabilities. By participating in safe, fun and 

challenging outdoor recreation activities together students are able to have a shared
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experience and find a commonality with one another. Evaluations from the first year 

show the program is highly effective in fostering healthy social relationships, higher selfconcept, sensitivity to the needs of others and positive behavioral changes. Activities 

included hiking, indoor and outdoor rock climbing, snowshoeing, cooperative games, 

adaptive cycling, equestrian activities, and exploration of local nature centers.

The Iowa Council funded Community Change Projects. Community teams led by 

people with developmental disabilities could write proposals to apply for seed money to 

make the change they want to see in their community. The purpose was to increase the 

leadership skills of people with developmental disabilities as well as to increase 

community integration.

Davenport, Iowa is located on the Mississippi and Rock rivers. Many lifestyle choices 

and recreation opportunities in the area involve water sports. People with mobility 

limitations do not have the same opportunity to participate in one of the most popular 

water sports; water skiing. The Davenport Team (comprised of two people with 

developmental disabilities, a physical therapist, a Recreation Therapist and an outdoor 

outfitter) used the seed money from the Council to purchase three ski cages and one sitski. They leveraged additional money for a weekend-long adaptive waterskiing clinic. 

Fifteen skiers with disabilities participated. Fifty volunteers were trained to assist. The 

event was held in coordination with a local ski club that spent a day learning how to 

adequately support persons with disabilities. Three of the skiers with disabilities skied in 

the ski club show Sunday after receiving training.

“Craig” is a 40 year old with a developmental disability. He had a strained relationship 

with his 11-year-old son. Craig learned how to ski the first day and brought his son with 

him on the second day of skiing. The two spent the day growing closer as they enjoyed 

the water. At the end of the day Craig’s son wanted to enroll in a free kids ski clinic.

After 25 years of living with paraplegia, “Jackie” attended the ski clinic to glide over the 

water, feel the spray against her face and “experience the rush of physical exertion.”

She didn’t make it the first time but tried again. “I amazed myself.” Her mother and 

relatives were there to watch with tears in their eyes.

Quality Assurance

Outcome Statement: In Fiscal Year 2005, Councils empowered 79,139 individuals with 

developmental disabilities to make choices and have control over their lives through training 

in leadership and self-advocacy. In Fiscal Year 2006, Councils assisted 72,806 people.

The New York Council provides funding to the Partners in Policymaking training 

program. The New York State program provides 40 people with developmental 

disabilities or their families with hands-on training in the areas of community building,
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advocacy, the legislative process, policymaking, inclusive education, housing and 

employment from experts in the field. Participants develop significant skills so that they 

can better advocate for themselves and family members.

“Kate” is the proud parent of four sons ranging in age from 17 to 24 years old. She 

entered the Partners in Policymaking program to hone her advocacy skills for two of her 

sons who have developmental disabilities. She says, “My knowledge-base grew through 

Partners and I have been more effective at all levels of advocacy.” Kate has recruited 

several members of her community to pursue the Partners in Policymaking training.

Thanks to exposure to the legislative process and public speaking through the Partners in 

Policymaking program, Kate has secured legislative funding for Family Support program 

enhancements in her area.

The Indiana Council designed the project Count Us IN to increase the numbers of 

people with disabilities engaged in the electoral process while also reaffirming the 

significant contribution people with disabilities can make to the electoral process. To 

energize people with disabilities, several educational seminars were conducted which 

covered voting rights, participation and volunteer opportunities. The American 

Association of People with Disabilities provided consultation and technical assistance 

through out the project. Booklets and voting guides were developed to familiarize people 

with disabilities about the voting process. Booklets were also published that targeted 

County and local election officials regarding access issues and disability awareness. 

Additionally, a number of presentations were made before various advocacy groups and 

providers of services.
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Chapter 5: Protection & Advocacy Systems

ADD funds Protection & Advocacy Systems (P&As) in each U.S. State and Territory, 

and in one Native American Consortium, to uphold and advance the civil and human 

rights of people 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 systems 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.

The following pages contain a small sampling of P&A activities conducted in Fiscal 

Years 2005 and 2006, framed around ADD’s areas of emphasis: child care, education, 

health, employment, transportation, housing, recreation, and quality assurance.

Child Care

Outcome Statement: In Fiscal Year 2005, P&As expanded appropriate, inclusive child 

care opportunities for 67 children with developmental disabilities and their families. In 

Fiscal Year 2006, P&As reached 63 people.

In Illinois, the P&A successfully advocated for a change in the hiring process for child 

care professionals and other care providers. The P&A became involved when staff 

investigated a company that provided services to adults with developmental disabilities, 

in order to determine whether the company was employing a direct care worker against 

whom there was a finding of child abuse. During the investigation, the P&A determined 

that while both the child care system and the system of adult services require certain

background checks for potential employees, which include searching their own data bases

for abuse/neglect findings, neither system accesses the abuse data base of the other 

system. This resulted in a substantial gap in each system’s ability to prevent the 

employment of individuals who have abused vulnerable people. Because many direct 

care professionals work within both systems, the P&A immediately called upon the 

affected State agencies to develop a process to access data bases in both systems. The 

P&A continues to supervise this process, which is ongoing.

Education and Early Intervention

Outcome Statement: In Fiscal Year 2005, P&As worked with parents, educators, school 

administrators, and policy makers to ensure that 11,736 students with developmental 

disabilities gained or maintained access to appropriate educational opportunities in their 

local schools. In Fiscal Year 2006, 12,242 people were reached.

“Carl” is an 11-year-old Navajo boy with developmental disabilities who was attending a 

public school, but in an extremely segregated setting. Carl’s parents requested the help
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of the Arizona P&A in obtaining thorough and appropriate evaluations of their son and 

then advocating for a more inclusive educational placement with the proper supports 

and services. The P&A was preparing for the administrative process when the school

expressed an interest in negotiating the matter. Through the P&A’s advocacy, Carl 

received comprehensive independent evaluations and is now placed in the regular 

classroom for most of the school day. The P&A also assisted Carl’s parents in 

developing a more positive and constructive relationship with the school staff.

“Maggie’s” mom contacted the Alabama P&A because she was concerned about her 

daughter’s education. Maggie was nine years old at the time, and she has autism. At the 

time her mother contacted the P&A, Maggie had been taken out of school and was being 

home schooled because Maggie’s mother objected to Maggie’s educational placement --

a self-contained classroom with access to non-disabled peers only for lunch and gym. 

Maggie’s mom wanted her daughter educated in a regular education classroom. She 

believed Maggie could handle such a placement and would benefit academically and 

socially from more interaction with the larger school community. The P&A represented 

Maggie at an Individualized Education Program (IEP) meeting, advocating for an 

appropriate educational placement with supports. As a result of the P&A's intervention, 

Maggie has returned to school and is spending a significant amount of time daily in a 

regular education classroom. She receives only math and language arts instruction in the 

self-contained class and the remainder of her day is spent in an inclusive environment, 

interacting with her peers.

“Mateo” has autism. His family speaks only Spanish, and he was eight years old when 

his parents contacted the P&A in California. Mateo's parents were unable to effectively 

advocate for him in the IEP process because of their inability to speak English, and 

because Mateo’s school district did not provide adequate interpreter services. Mateo 

remained in a special class despite his parents' efforts to integrate him. The P&A 

represented Mateo at his IEP meetings and secured a regular education class placement at 

his neighborhood school, the services of a Least Restrictive Environment (LRE) 

facilitator, extensive curriculum modifications and accommodations, a behavior plan, and 

the assignment of a one-on-on aide for six hours each day. Mateo is now doing well in

his community school.
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Health

Outcome Statement: In Fiscal Year 2005, P&As increased access to affordable health care 

for 1,340 individuals with developmental disabilities by providing advice, advocacy training, 

legal intervention, or other forms of assistance. In Fiscal Year 2006, P&As reached 1,531 

people.

“Joe” is 31⁄2 years old and lives on the Turtle Mountain reservation in North Dakota with 

his parents. The Turtle Mountain Reservation sits just south of the Canadian border. The 

reservation population is 8,307, of which over 96 per cent are American Indians. It is 

estimated that almost 19 percent of these individuals have a disability. Twenty-eight 

percent of the families live below the poverty line. Unemployment is close to 15 percent 

as compared to the four per cent unemployment rate for the State as a whole.

The North Dakota P&A hired a full-time disabilities advocate to start in its new office in

Belcourt, a town on the reservation, in July 2005. The new office was the result of

people with disabilities and family members, who live on the reservation, asking for more 

advocacy services. This was combined with the fact that Turtle Mountain, the smallest 

reservation in the State geographically, is the largest in population (approximately 8,300 

individuals). This new disabilities advocate was able to help Joe receive the medical care 

he needs.

Joe’s primary diagnosis is cerebral palsy and, accordingly, his doctor prescribed a supine 

stander (otherwise known as a standing frame) to facilitate Joe’s neuro-developmental

and orthopedic needs. Payment for the supine stander was denied by Medicaid. Joe’s 

doctor referred his family to the P&A. The P&A provided legal representation and filed 

an appeal on behalf of Joe. The P&A commenced negotiations with Medicaid’s legal 

counsel. The negotiation process brought to light a number of concerns. As a result, the 

supine stander was found to be medically necessary, and the preauthorization request was 

approved. Not only did Joe receive the needed standing device, the case resulted in 

significant change in Medicaid policy. Upon a showing of medical necessity, Medicaid 

will now pay for standing frames for consumers who are need of such equipment.

Employment

Outcome Statement: In Fiscal Year 2005, P&As supported 426 people with developmental 

disabilities in obtaining or maintaining employment consistent with their interests, abilities, 

and needs. In Fiscal Year 2006, P&As assisted 343 people.

The Alaska P&A assisted “Marco” in an employment discrimination case. Marco, who 

is deaf, was terminated from his position with a civilian military contractor. During the 

termination process, the contractor never provided an interpreter. Therefore, Marco did 

not understand why he was being terminated, and was unable to defend himself, or to
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discuss his employment situation. Moreover, the employer thought the Americans with 

Disabilities Act did not apply to him as a military contractor. After a series of 

negotiations, the P&A helped Marco to get his job back, with back pay.

Transportation

Outcome Statement: In Fiscal Year 2005, P&As helped 133 people with developmental 

disabilities locate the solutions necessary to get where they needed to go. In Fiscal Year

2006, P&As assisted 130 people.

In St. Cloud, Minnesota, three high school students wanted to participate in a rite of 

passage anticipated by teenagers across the country – learning to drive a car. The three 

students, who are deaf, called local driver’s education schools to sign up for classes. 

They requested a sign language interpreter, an accommodation that all of the schools 

refused to provide. The students and their parents contacted Minnesota’s P&A and sued 

the schools, charging that they violated federal and State human rights laws by refusing 

to provide interpreters. The schools then agreed to settle the case and provide 

interpreters not only for these particular students, but for any students with hearing 

impairments who wish to take driver’s education in the future.

Housing

Outcome Statement: In Fiscal Year 2005, P&As assisted 408 individuals in obtaining or 

retaining a residence, living where and with whom they chose. In Fiscal Year 2006,P&As 

helped 484 people.

“Maria” is 42 years old, with severe developmental disabilities. When the Kentucky 

P&A staff first met Maria, she was living in a institution, a 400 bed facility that had been 

riddled with problems over the past few years. The Office of the Inspector General 

issued more than 20 citations in 2005 and 2006, and the facility received notice that its

funding would be terminated. Maria had lived at the facility for 16 years. When the staff 

first visited her, she was wearing soiled clothing, sitting on the couch rocking back and 

forth. Facility staff reported that Maria is pleasant and friendly, except when being 

directed to do something she does not like. She then becomes agitated and may bite 

others. Some of the barriers to community living presented by staff at the facility and 

State guardianship services included her medical fragility and risk for falls due to 

problems with balance. Maria had 118 minor injuries in the year prior to the P&A’s 

intervention, including 16 incidents of aggressive behavior toward her from others. 

Through P&A negotiations, including attendance at transition/discharge meetings, the 

team agreed that Maria would benefit from supports in the community. During transition 

it was discovered that Maria had three sisters, all of whom have developmental 

disabilities, and who were currently being served in the community. In 2006, Marie 

moved out of the institution and into the community. Maria now shares a lovely three-
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bedroom home with two housemates in rural Appalachia. She enjoys participating in her 

community and visiting with her sisters.

For several years the Kansas P&A has been a part of the Kansas Statewide Homeless 

Coalition's Summit on Housing and Homelessness. P&A staff attend meetings of the 

Governor's Mental Health Planning Council's subcommittee on Housing and 

Homelessness. Coordinators help with credit checks, background checks, section 8 

applications, transition from the Rescue Mission, and other housing issues. In addition, 

P&A advocacy staff work with Independent Living Centers and local housing authorities 

to find housing for homeless clients/consumers when those issues are part of a disability 

discrimination case.

The South Carolina P&A staff learned that “Gwen” was about to be moved to a more 

restrictive setting because of a change in her health status. Gwen liked the residence in 

which she lived; she didn’t want to leave. The P&A staff worked with Gwen and 

suggested possible alternatives to her local provider, which was concerned about being 

neglectful by not moving Gwen to a more restrictive setting. The P&A helped find 

solutions to better support Gwen in her current environment, and she was able to remain 

in the home of her choosing.

Recreation

Outcome Statement: In Fiscal Year 2005, P&As facilitated participation or inclusion in 

order for 63 individuals to be able to enjoy activities they chose. In Fiscal Year 2006, P&As 

helped 41 individuals access recreation.

From first dates to birthday dinners, restaurants are often a central part of celebrations 

and social interaction. However, when people with disabilities talk about not being able 

to get into a restaurant, they’re not always discussing the difficulty of getting a 

reservation on a Friday night. From parking to restroom access inaccessible 

establishments can create barriers that prevent diners from enjoying a family celebration 

or the best filet mignon in town.

New Hampshire’s P&A, is working to improve the restaurant experience for diners with 

disabilities. The Rolling Gourmet offers diners with disabilities the ability to review 

restaurants and have their reviews publicized for other diners to access when choosing a 

restaurant. It has proved to be a popular program, and 175 New Hampshire restaurants 

have been rated so far.

The interactive guide to restaurant accessibility allows patrons to rate a restaurant in 

multiple categories, including:

• Parking

• Getting into the restaurant

• Inside access

• Restroom access
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• Accommodations

• Overall experience

Not only is this a guide for accessible dining, it also serves as incentive for restaurants to 

improve their ratings.

Quality Assurance

Outcome Statement: In Fiscal Year 2005, P&As secured or maintained quality assistance 

for 5,879 people with developmental disabilities, increasing their safety or personal welfare, 

and maintaining their personal authority. In Fiscal Year 2006, P&As reached 6,084 people.

Quality assurance activities are undertaken by the grantees to ensure that individuals are 

able to live free from abuse and neglect, that they can personally make the choices that 

affect their lives, that they are included in their communities, and that they have access to 

high quality services and supports. Due to the nature of their work, P&As most often 

provide legal services on behalf of individuals with developmental disabilities, protecting 

their rights, freedom, and safety.

The Vermont P&A represented a 19-year-old woman who is deaf, and who has 

developmental disabilities and mental illness. “Jane” had been adopted from a Russian 

orphanage when she was a young child. Jane left her adopted home after it was revealed 

that she, along with other deaf adopted children in the home, had been sexually assaulted 

by the adoptive father over a number of years. The adoptive father was incarcerated and 

Jane did not want to have anything to do with her adoptive mother. She had never 

attended school and had not learned American Sign Language or any other standardized 

communication system. Jane was briefly committed to the psychiatric unit of a local 

hospital, and thereafter was essentially homeless. Her adoptive mother had petitioned to 

be appointed as temporary guardian. Although communication was challenging, Jane 

was able to let the P&A know that she did not want her mother to be her guardian. The 

P&A defeated her mother's request for a temporary guardianship and, at Jane's direction, 

provided advocacy for her to attend an out-of state-deaf school and treatment program. 

Prior to her departure to attend the program, Jane indicated that she was interested in 

having a guardian to protect her interests and ultimately, in the absence of any other 

person willing to act as guardian, the Probate court appointed her mother as limited

guardian with the power to enroll Jane in the out-of-state Deaf School and to maintain her

enrollment. The P&A provided advocacy to maintain Jane’s private health insurance, 

which was funding her schooling out of state. In addition, advocacy was provided, 

through treatment coordination meetings, so that Jane could return to Vermont and live in 

a community-based setting, but not with her adoptive mother.

The Wyoming P&A received several incident reports in which persons with 

developmental disabilities were being injured while being restrained. The P&A 

challenged the provider, which used these actions and its policies that seemed to
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encourage restraint. The P&A obtained materials from the Training and Advocacy 

Support Center and from the National Association of State Mental Health Program 

Directors regarding alternatives to the use of restraint techniques. This information was 

shared with the provider. As a result of P&A advocacy, the provider began following 

crisis de-escalation procedures prior to physical interventions. The provider informed the 

P&A that they were seeking “best practices for dealing with disruptive behavior with the 

least restrictive means possible.” The P&A engaged in follow-up and learned that the 

provider was no longer teaching restraint as a means of crisis intervention. Client 

behavior plans are showing significantly less use of restraint techniques and more use of 

positive behavioral supports.

“Paulo” has Asperger’s Disorder, and he lives in a psychiatric medical institution for 

Children in Iowa. His finger was broken during a restraint. Under the Children’s Health 

Act of 2000, the facility notified Iowa P&A. Advocates investigated the situation and 

determined that the restraint was excessive. The P&A recommended that the facility 

research more appropriate methods to deescalate crisis situations and that restraints such 

as this have been banned in other facilities. As a result of the investigation, the facility 

increased mandatory training to all staff regarding reducing restraint and seclusion. They 

updated their policies regarding restraint procedures.

The Massachusetts P&A provided financial and organizational support to MASS, 

(Massachusetts Advocates Standing Strong), the statewide self-advocacy organization for 

individuals with cognitive disabilities, to combat instances of sexual exploitation and 

other forms of mistreatment. Too often trainings are geared to service providers and

State officials, rather than the individuals with cognitive disabilities themselves. In 

contrast to that approach, the focus of this series of training events was to heighten the 

awareness and understanding of people with cognitive disabilities. The P&A and MASS 

contracted with a self-advocacy organization in Maine, to conduct a series of regional 

train-the-trainers events. The slideshow-centered presentations were very well-received 

and resulted in a core of MASS members who are interested in expanding the trainings to 

an even greater number of people with disabilities.

The Tennessee P&A provided 153 scholarships to persons with disabilities and their 

family members in order for them to attend the Annual Mega Conference. As a result of 

the scholarships the P&A provided, these attendees were empowered and trained in selfadvocacy skills in the areas of special education, access, community integration, 

employment, abuse/neglect and other issues, and learned significant and effective tools in 

order to achieve positive changes in their own lives as well as the lives of other 

Tennesseans with disabilities.

Chapter 6: 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 support helps individuals
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with developmental disabilities and their families stay together and participate 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 projects that 

provide ADD with the opportunity to work on targeted issues that are important to the 

developmental disabilities community.

These projects focus on the most pressing issues affecting people with developmental 

disabilities and their families. Project issues transcend the borders of States and 

Territories, while project designs are oriented to permit local implementation of practical 

solutions. Over the years, PNS funds have supported families and caregivers, increased 

community living options, promoted inclusive education, developed quality assurance 

standards, explored avenues to promote self-determination, assisted with family 

leadership development, and increased opportunities for self-advocates to be involved in 

system change initiatives. PNS funding in Fiscal Years 2005 and 2006 was for Family 

Support 360 projects, youth centers, and data collection activities.

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.

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, help in coordinating services, or aid in finding 

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.
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The goal of every one-stop is to assist a family to stay together as a unit 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 

unserved or underserved populations. Through the one-stop a family will have a family 

assessment and participate in the development of its individual family plan. The plan is 

to include the services and supports (e.g., health and/or mental health care, housing, 

counseling and/or marriage education, parenting skills development, child care, 

employment, transportation, respite care, personal assistance care, financial assistance 

and/or management) the family needs that may be provided by public human service 

agencies and/or private community- and faith-based groups. Services and supports are

for any family member as needed, not just the member with a developmental disability.

As a 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.

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.

One of the strengths of the Family Support 360 approach is the ability of one-stop centers 

to adapt to the unique needs of the communities they serve. The following are examples 

of several approaches or models that have shown successful early results.

Culturally-Sensitive Mobile Services Model
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In New Mexico, the UCEDD, which received the Family Support 360 grant, has 

partnered with a Native-American nonprofit organization to provide a comprehensive 

array of culturally appropriate services for families who have a child with a 

developmental disability. Project staff with laptops travel to four Pueblos, working with 

tribal leaders and visiting families in need at their own homes. A steering committee 

comprised of families, tribal members, and key agencies oversees the implementation of 

the five centers. This project recognizes the sensitive need to balance tribal sovereignty 

with State and Federal laws, as services are being provided to Native-Americans with 

developmental disabilities and their families.

Faith-Based Model

In Minnesota, the State Council on Developmental Disabilities, which received the 

Family Support 360 grant, has teamed up with a local church to address the needs of 

unserved and underserved families in one of Minneapolis’ poorest neighborhoods. An 

open house promoted the availability of the services and resources of the center to both 

families and providers. Interpreter services are provided to Somali and Spanish speaking 

families.

Family Navigators Located with Local Programs Model

In Colorado, family navigators are located in the same office as the staff of a program 

that works with Temporary Assistance for Needy Families (TANF) recipients. 

Navigators provide support to families, as well as ongoing comprehensive training to 

case mangers to improve overall services to families of individuals with disabilities. 

Resources available to families and TANF case workers include assistance with case 

reviews, parent support networks, advocacy with the public school system, advocacy for

inclusive child care, and follow-up services to help families meet their desired outcomes.

Local Peer Navigators Model

In Vermont, local parents who have encountered the service system first-hand were hired 

on a part-time basis to assist other parents in navigating the service system. Peer 

navigators also provide guidance, comfort, and encouragement to families in crisis. A 

statewide management team, which includes family members, assists the peer navigators 

with identifying resources and locating services. The State Agency of Human Services 

oversees the project. The peer navigators are hired, trained, and supervised through a

sub-contact with the UCEDD.

Some individual accomplishments of the Family Support 360 programs in Fiscal Years

2005 and 2006 included:

• Jean P. Snoddy, Director of Colorado Family Support 360 was appointed by the

Governor to the Colorado State Board of Human Services.

• Alaska’s Stone Soup Group (SSG) became a certified Care Coordinating agency 

for the State of Alaska, which included receiving their own Medicaid billing number 

and authorization. This was a “first step” (and project goal) toward building
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sustainability for SSG to provide ongoing care coordination and support for families 

that may be Medicaid billable.

• A team of Idaho Department of Health and Welfare staff and the family support 

coordinator refined the process of supporting families to allow only one contact 

person (the family support coordinator) to talk with families and connect them to the 

correct resources.

• New Hampshire began to convene a Transportation Cooperative, which included 

a Peterborough area State representative.

• Oklahoma partnered with the Community Action Project, an organization that 

created an electronic resource searching tool for individuals and families in 

Oklahoma called the “Benefits Eligibility Systems for Oklahomans” (BESO). The 

BESO system allows the Family Support Coordinators to enter a family’s data into 

the system and be prompted to services the individual or family may be eligible to 

receive.
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Family Support 360 Program Map

The highlighted States/territories on this map represent the locations of Family Support

360 programs.

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. These grants continued to be 

active in Fiscal Years 2005 and 2006. Centers will help youth and individuals with 

developmental disabilities on national and local levels.

Youth Centers address the unique challenges that youth with developmental disabilities 

face, including locating and maintaining appropriate housing, excelling in careers of their 

choice, and making informed decisions about their lives, education, and personal care.

By reaching these young adults early, these programs can impart skills that will increase 

their independence and personal freedom throughout their lives.
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Youth information, resource, and training centers educate youth with developmental 

disabilities about the value of graduating and encourage emerging leaders with 

developmental disabilities to seek and maintain employment.

For purposes of this program, the term “youth” is defined as individuals with 

developmental disabilities between the ages of 13 and 17 while “emerging leaders” refers 

to individuals with developmental disabilities between the ages of 18 and 30 with the 

desire and interest to engage in community leadership and policymaking activities.

As a result of the activities undertaken by these Centers, young people with 

developmental disabilities have increased opportunities to graduate with a standard high 

school diploma and to obtain and retain paying jobs as well as work on additional goals 

important to young adults.

The Youth Centers focus on diverse populations, are located in either rural or urban 

locations, and partner with local organizations in order to offer youth with developmental 

disabilities new opportunities as they transition from adolescence to adult life as 

contributing members of their communities.

Some of the Youth Center achievements in Fiscal Years 2005 and 2006 include:

• Inclusion Research Institute (IRI) – The DC Self-Advocacy Empowerment 

Center has established three Empowerment groups that have been meeting and 

working on advocacy efforts: The Sharpe Health School - 14 youth; the College 

Student and Young Professionals Group - 11 emerging leaders; and the National 

Children’s Center group - 7 emerging leaders. A fourth Empowerment group is 

being established at the Cesar Chavez Public Policy Charter High School.

• Institute for Educational Leadership (IEL) – National Consortium on 

Leadership and Disability-Youth (NCLD- Youth) – NCLD-Youth has been 

developing and revising their various workbooks and curricula, a legislative guide 

and submitted their draft curriculum on disability culture/history to a group of 

youth reviewers. They continue to work with a graphic designer/web master who 

is developing a selection of clip art with disability themes. IEL continues to 

collaborate with various youth groups and programs for youth.

• Iowa Department of Human Services – Self Advocacy and Leadership for 

Youth with Disabilities (SALYD) is currently interviewing for a full time 

director, now has office space and will move in soon. Iowa’s website is up and 

running at http://www.salyd.org. The “side” SALYD-- a potential program 

branch of the organization to conduct outreach, host social events and other 

activities to increase youth participation and youth knowledge about programs 

and opportunities-- is being considered.

• The Maryland Developmental Disabilities Council – Youth Empowerment

Alliance (YEA) The YEA project has completed three modules for their
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trainings. Recently they attended the TASH conference and are implementing 

training programs for youth and emerging leaders that will be similar to one 

another. Prince Georges County is considered the pilot site for the youth 

leadership advisory committee meeting.

• Independence, Productivity, Self-Determination, Integration and Inclusion’s 

(IPSII Inc.) IPSII, Pathways: The Road to Leadership – IPSII has developed 

youth-friendly web-based materials in English and in Spanish. They have the 

unique opportunity to work with the Family Support 360 project within the same 

neighborhood. They are seeking to expand collaboration. The emerging leaders 

are now taking more active leadership roles in the advisory meetings. Pathways 

have developed a leadership training program for non-readers.

• Family Voices – Kids As Self Advocates (KASA) has been working on a white 

paper that will include data from questions that discuss views of youth on 

Standardized testing. KASA has also developed a manual on how to get youth 

involved in leadership roles of organizations and agencies.

• WA Protection and Advocacy System (WPAS) - School to Work – WPAS is 

working with five school districts, each having weekly advocacy clubs that are 

student led. They continue to receive requests from school districts. Upcoming 

events include a parent meeting where emerging leaders and youth will make 

presentations about the experience.

On-going Data Collection and Information Dissemination

In Fiscal Years 2005 and 2006, ADD funded four National projects to examine and 

provide information about financial commitments and programmatic trends in 

developmental disabilities services and supports. Each of the four projects has a different 

focus described in the remaining pages of this chapter.

The State of the States in Developmental Disabilities

The State of the States in Developmental Disabilities is a comparative nationwide 

longitudinal 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. The project:

• Analyzes developmental disabilities financial and programmatic trends in each State 

and the District of Columbia;

• Identifies trends and innovations in the financing of family support, supported living, 

and supported employment in the States;

• Is conducting a special study of Medicaid spending for special education; and
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• Conducts 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.

The project contributes reliable knowledge about the status of services for people with 

developmental disabilities from a State and national perspective.

State of the States in Developmental Disabilities: 2004 – 2007, A Nationwide Study 

of Financial and Programmatic Trends

This project extends 17 years of research, describing day and employment services for 

individuals with developmental disabilities. The project:

• Assesses the effectiveness of State Developmental Disabilities and Vocational 

Rehabilitation agencies in promoting full inclusion of individuals with 

developmental disabilities through employment and other community activities;

• Assesses the employment and economic status of individuals with developmental 

disabilities on a State and National basis;

• Describes and promotes effective State and local policy and practices that enhance 

access to integrated employment at both the systems and individual consumer levels;

• Maintains www.statedata.info, an interactive website that provides accessible charts 

and tables illustrating service system investment in employment services;

• Demonstrates the use of the Geographic Information System (GIS) Technology to 

illustrate patterns of investment in service system outcomes;

• Provides online access to a catalog of best practices in State and local policy that 

promotes access to integrated employment; and

• Provides online access to best practices in job support for individual job seekers, 

family members, and advocates using individual stories.

A number of products will be produced by this project, including journal articles, 

research reports, fact sheets, and guides for consumers and family members.

The National Residential Information System Program: Ongoing Data Collection 

and Information Dissemination on Residential Services for Persons with 

Developmental Disabilities

This project continues more than 20 years of analysis of annual State and national 

statistics on residential services for people with developmental disabilities (DD),
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including State and non-State institutional settings as well as community and home-based 

residential services. The project:

• Utilizes a large multi-State database on individuals with DD to examine the 

associations between personal characteristics, living arrangements, financing and 

support models, State systems and other factors on the achievement of inclusion, selfdetermination, satisfaction, and outcomes;

• Conducts State policy and program surveys on key topics in residential and other 

community services; and

• Maintains clearinghouses of information and resources on consumer-controlled 

housing, the direct support workforce, and community living outcomes.

The project also disseminates information through a variety of formats, which include, 

among others, annual reports; the IMPACT, Policy Research Brief, and Community 

Services Reporters newsletters; the QualityMall.org website; and the “Trends and 

Milestones” feature in Mental Retardation. The activities carried out through this project 

provide timely and accurate information about residential services in the United States 

and on effective, innovative policy development and implementation.

The Medicaid Reference Desk: A Web-Based Information Resource for Adults and 

Children with Developmental Disabilities, Families, Service Brokers, Service 

Providers, and Policymakers

The Medicaid Reference Desk Project is maintaining and expanding an interactive 

website to provide people with developmental disabilities, their families, and the general 

public with timely, accurate State and national level information on Medicaid services. 

The project serves as a nationwide resource by providing research, translation, and 

audio/video recording of comprehensive Medicaid information for each State and 

Territory. The website presents information in plain English that is understandable to 

readers with varied ability levels to read. The project, primarily through its website:

• Provides current State-specific Medicaid services information, including printable 

resource sheets, in everyday language;

• Offers a cognitively accessible, person-centered planning module that will allow a 

person with a developmental disability and/or family member to produce a “proposed 

list” for the service coordinator in his or her State;

• Disseminates information about the project to a variety of audiences through an 

online annual briefing book and printable brochures; and

• Showcases an expanding collection of stories that communicate in everyday language 

the constructive experiences of people with developmental disabilities benefiting

from Medicaid funding to create options and choices in their lives.
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Chapter 7: Accountability

The Administration on Developmental Disabilities (ADD) uses its Monitoring and

Technical Assistance Review System (MTARS) 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 the 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 grantees within the State;

 Technical assistance needs; and

 Innovative practices.

During the MTARS process, 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 their State DD network. This includes 

information on the number of projects that include substantive joint efforts with 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 the MTARS is comprehensive in scope, 

intensive, involves follow-up activities, and has many opportunities for dialogue with
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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.

MTARS Team Structure

The MTARS team structure was revised in Fiscal Year 2005. Generally, the MTARS 

Team is comprised of the following people:

• ADD Central Office Program Specialists

• Regional Office Program Specialist for DD

• Council Peer Reviewer

• P&A Peer Reviewer

• UCEDD Peer Reviewer

• Individuals with developmental disabilities/family members

• Fiscal Reviewer

The MTARS Team is managed by the Team Coordinator, who is an ADD staff person.

ADD divides the larger MTARS Team into three Program Teams. The use of program 

teams makes it possible for reviewers to focus on one program and accomplish more 

during the site visit. The Program Teams are:

1) DD Council Program Team

2) P&A Program Team

3) UCEDD Program Team

Each of the Program Teams consists of a minimum of three people, including a/an:

1) ADD and/or Regional Office staff person

2) Peer

3) Individual/family member

The ADD/Regional Office Staff person serves as the Program Lead for the team.

The fiscal reviewer functions independently of the Program Teams. They schedule with 

the grantees a time during the site visit week to visit the program to conduct the fiscal 

review. They meet with staff responsible for fiscal-related matters. They typically spend 

one day at each program.
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61

The Review Team members presented above is the norm. However, there may be 

instances when additional people accompany the team. For example, an ADD manager 

may participate in MTARS. There may be additional ADD and/or Regional Office staff 

who participate in the review. In addition, individuals with developmental disabilities 

may request to bring a personal support person on the site visit. The personal support 

person is not an active participant. See the Figure on the next page for a overview of the 

MTARS team configuration.

In Fiscal Years 2005-2006, New Hampshire, Delaware, Maryland, Illinois, New mexico, 

South Dakota, and California underwent an MTARS review.
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MTARS Team Configuration

MTARS Team

(Coordinator)

DD Council Program Team P&A Program Team UCEDD Program Team Fiscal Reviewer Others

(ADD Managers, RO staff, ADD staff, 

etc.)

ADD/RO Staff 

(Program 

Lead)

ADD/RO Staff 

(Program 

Lead)

ADD/RO Staff 

(Program 

Lead)

Peer Peer Peer

Individual/ 

Family 

Member

Individual/ 

Family 

Member

Individual/ 

Family 

Member

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Chapter 8: Emergency Preparedness

This chapter of ADD’s Report to Congress, the President, and the National Council on

Disability highlights the work done by ADD and its grantees in Fiscal Year 2005 and 2006 to 

address emergency preparedness, and will discuss the work that remains to be done. It provides 

an overview of:

1. Emergency Preparedness and Individuals with Disabilities

2. The ADD Response after Hurricanes Katrina and Rita

3. Information about The Working Conference on Emergency Management and Individuals 

with Disabilities and the Elderly, sponsored by HHS in June 2006 in collaboration with 

the U.S. Department of Homeland Security (DHS) and other agencies, especially the 

Administration on Aging and the Office on Disability, in which ADD provided central 

coordination, management, and financial responsibility.

Emergency Preparedness and Individuals with Disabilities

In August and September of 2005, Hurricanes Katrina and Rita made landfall in Louisiana, 

uprooting lives across the Gulf Coast. Major damage to the coastal regions of Louisiana,

Mississippi, and Alabama made Katrina the most destructive and costliest natural disaster in the 

history of the United States. These storms highlighted our Nation’s need to improve emergency 

preparedness—not just in relation to natural disasters, but also in order to be able to respond 

effectively in other kinds of emergencies, such as the pandemic flu or terrorist attacks. The 

storms also illustrated the extreme vulnerability of certain segments of our population, including 

individuals with disabilities and the elderly.

The needs, unique situations, and knowledge of people with disabilities, including developmental 

disabilities, must be more effectively integrated throughout the emergency management process. 

While all Americans face difficulties during emergencies, these difficulties are often increased

for people with disabilities and their families.

ADD recognizes that while Federal involvement in emergency management is crucial, 

community organizations and State and local governments are largely the primary first

responders in a disaster. In order to effectively incorporate the needs of the disability community 

into emergency planning at all levels, we must not only plan for individuals with disabilities, we 

must include the disability community itself in all stages of planning. . ADD and its grantees 

firmly believe that the following three steps must be incorporated into emergency preparedness

at all levels:

1. People with experience working with the disability and aging communities must be 

involved in all phases of emergency management: planning, response, and recovery. 

Members of these communities themselves should be involved as well, and must have 

defined roles in shaping response strategies and solutions.

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2. Individuals and organizations involved in emergency management, and individuals and 

organizations focused on disabilities or aging must develop a plan for working together. 

The time to build solid relationships with other organizations is before the waters start to 

rise. By starting now to encourage collaboration between organizations, we can become 

familiar with each other’s operations, and discover ways that our services and planning 

techniques can complement each other.

3. Resource mapping is crucial. Everyone should spend time on documenting the 

availability and location of the resources that will be needed in the event of a disaster --

supplies, equipment, vehicles, housing. During Hurricane Katrina, there were hundreds 

of accessible buses located within a few hundred miles of the disaster area that went 

unused because responders didn’t know where they were or how to get permission to use 

them. In order to have access to the resources needed in a disaster, we must know where 

those resources are and how to quickly access them when they are needed.

ADD and Grantee Response after Hurricanes Katrina and Rita

In the wake of Hurricanes Katrina and Rita, both ADD and its grantees played important roles in 

response and relief. Some of these efforts are highlighted below.

ADD Response

ADD’s decisions and responses were influenced by what its grantees in the affected States told

ADD staff in a series of conference calls on September 7 and 8, 2005.

Recognizing the need to support grantees as well as Federal and State entities in the response and 

recovery effort, ADD partnered with a variety of organizations and agencies in order to provide 

technical assistance and guidance regarding strategies for responding to the needs of evacuees 

with disabilities, including those with developmental disabilities.

In the months after the hurricanes, ADD partnered with and gave guidance and technical 

assistance to the Department of Homeland Security, the Federal Emergency Management 

Agency, the Red Cross, the Administration for Children and Families, Centers for Medicare & 

Medicaid Services, the Substance Abuse and Mental Health Services Administration, the

Administration on Aging, the Department of Agriculture, the Office on Disability, the 

Department of Education, the Interagency Committee on Emergency Preparedness for 

Individuals with Disabilities, and State officials in Louisiana, Mississippi, and Texas.

Most importantly and effectively, ADD engaged and worked through its grantees in Louisiana, 

Mississippi, Texas, Alabama, and Tennessee.

In the months following the hurricanes, ADD conducted three site visits. For the first site visit, 

ADD representatives served as part of a cross agency team, and traveled to Baton Rouge, 

Louisiana; Jackson, Mississippi; and Austin, Texas. There, they met with ADD grantees, State 

officials, local entities, Red Cross personnel, and FEMA representatives.

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This visit laid the groundwork for ADD grantees to work with State agencies and the Red Cross 

in assisting people with disabilities in the response and recovery effort. During the second visit, 

staff were deployed to Louisiana (Baton Rouge and Lafayette) as part of a broader ACF team. 

Both staff members monitored the services provided in the shelters, met with State and FEMA 

officials, and coordinated activities with grantees.

Finally, ADD conducted a two-day visit to Tennessee where she discussed issues related 

response and recovery efforts.

ADD Gulf Coast Grantees’ Responses

The following is an overview of ADD grantees’ activities in the months following hurricanes 

Katrina and Rita. It is by no means a comprehensive account, nor does it address emergency 

preparedness and hurricane relief activities initiated more than six months after the hurricanes.

Many grantees went above and beyond the call of duty to help the victims of the hurricanes, 

particularly in the areas where the most demand was felt -- Louisiana, Mississippi, and Texas. 

Those grantees worked around the clock to ensure that the needs of persons with disabilities 

were met. Many of the grantees’ staff members were themselves displaced. The Louisiana 

UCEDD offices in New Orleans were completely wiped out and the P&A offices in New 

Orleans were badly damaged.

Louisiana Grantees

The Louisiana Developmental Disabilities Council responded rapidly to assist individuals with 

developmental disabilities affected by the storm. Two days after the hurricane hit, essentially 

every staff person at the Council became engaged in assisting people. The Council collaborated 

with the ARC of Louisiana, local ARCs, Families Helping Families, the Down Syndrome 

Association, the Advocacy Center, and the Department of Health and Hospital’s emergency 

response team to identify, locate, and directly assist people to get the supports they need. 

Flexibility was critical, allowing the Council to immediately provide resources and support 

where and how it was critically needed by individuals with developmental disabilities and their 

families.

Examples of how the Council assisted evacuees with disabilities:

• The Council assisted 7 year old “Doug,” a boy with Down Syndrome, and his family by 

personally arranging private transportation from the Baton Rouge Red Cross shelter to 

Lake Charles LA.

• The Council provided bus tickets from Baton Rouge to Dallas for a family with a child 

with severe disabilities being transitioned from a Red Cross shelter because the infirmary 

was being closed.

• The Council provided transportation to “Lily,” a young woman with cerebral palsy and 

her large family from a Red Cross center to a church that will meet her special needs in

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privacy and dignity. The young woman was no longer able to stay in the Red Cross 

shelter because of her specific needs.

The Advocacy Center (the Louisiana P&A) was also actively engaged in helping evacuees with 

disabilities. Together with other organizations in the State, Advocacy Center staff went out in 

teams to work in shelters and identify people with disabilities in need of assistance. Staff 

worked with a housing task force to raise awareness of the need of people with disabilities 

affected by the storm. They visited temporary housing sites where FEMA was staging trailers 

and mobile homes. The Advocacy Center staff worked closely with FEMA and other State 

agencies to ensure that evacuees with disabilities were provided with accessible trailers and

mobile homes. In order to best meet the needs of those impacted by the hurricane, the Advocacy 

Center developed a “Katrina Unit,” which provided specific information about disaster relief to 

seniors and people with disabilities. The Katrina Unit also provided referrals and short-term 

assistance, and fielded a large number of calls related to the need for accessible housing. 

Additionally, the Advocacy Center put together a packet for victims of the hurricanes that 

provided information on issues such as FEMA and other public benefits, housing, and 

transportation.

The Louisiana UCEDD, The Human Development Center (HDC), is part of the School of Allied 

Health Professions (SAHP) within the Louisiana State University Health Sciences Center 

(LSUHSC). Of the 40 full-time staff members, 29 were unable to return to their homes directly 

after Hurricane Katrina. More than a dozen staff lived in the hardest-hit areas of New Orleans.

Despite this, HDC made significant contributions to the hurricane response effort in Louisiana. 

In the days after the hurricane, HDC faculty and staff worked side-by-side with their ADD 

Network partners in shelters to provide services and supports to displaced constituents and to 

obtain information from them to be used for strategic planning and resource allocation. In 

addition, staff members provided leadership in developing and implementing plans to ensure 

availability and access to community housing for displaced citizens with disabilities, and the 

elderly. Finally, HDC documented, and continues to address, what worked, what did not work, 

what is needed, and lessons learned from the perspective of persons with disabilities and their 

families. HDC intends to use this information to develop recommendations and training 

materials that persons with disabilities, their families, and the agencies/providers/ personnel that 

support them can use to ensure a higher level of “emergency preparedness” exists within the 

disability community in the future.

Mississippi Grantees

The Mississippi UCEDD – the Institute for Disability Studies (IDS) - provided extensive case 

management services and outreach to evacuees. In addition to providing general advocacy 

services, UCEDD staff went into the shelters and provided recreational and academic support to 

children, and mental health support to adults. Nine licensed social workers on staff provided 

case management services in the community. Each social worker carried an average caseload of

35 families. A 1-800 phone number was established for families to call for information and 

referrals, and more than 500 families were helped through this hotline. UCEDD staff also

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developed a Hurricane Disaster Resource Directory to distribute to the evacuees at local shelters 

and to other displaced families across the State. The directory, which included phone numbers 

for Federal, non-profit, and faith based organizations providing help to evacuees, was also 

distributed to local agencies and schools. In addition, housing placement and counseling 

services were provided to evacuees.

The Mississippi P&A rented a mobile unit to provide outreach to evacuees across the State. As a 

result, they were able to identify and provide advocacy services to evacuees with disabilities. 

Additionally, the P&A held multiple press conferences to raise awareness regarding the needs of 

individuals with disabilities who were impacted by the storm.

The Mississippi Council sponsored several initiatives. Among other activities, Council 

representatives assisted families with housing needs, trained and then served as helpline 

operators, assisted individuals with equipment needs, and worked to help displaced college 

students with disabilities so that they could continue their education.

Texas Grantees

Texas received a large percentage of evacuees after Hurricane Katrina devastated Louisiana, and 

then faced the need to provide additional services within the State when Hurricane Rita struck 

Texas.

The Texas Developmental Disabilities Council received approval to expand their "Texas 

Community Integration Project" grant. This grant goes to the Texas P&A, and in its original 

form was intended to help fund the P&A’s efforts to help transition people out of institutional 

settings. In the wake of Hurricanes Katrina and Rita, the grant was expanded to specifically 

target Katrina/Rita evacuees who were in danger of institutionalization. The Council also 

expanded its web site, adding 15 pages of resources for evacuees. Additionally, Council 

representatives provided input to the Texas governor’s task force focusing on emergency 

response for people with disabilities.

The Texas UCEDD visited the shelter in San Antonio regularly to provide outreach services to 

people with disabilities. They assisted individuals to help them find more permanent solutions 

post-Katrina. They assisted many families, most particularly those who are relocated to the San 

Antonio area and needed to access special education services.

The Texas P&A, Advocacy, Inc., was also instrumental in reaching out to the evacuees, even 

though their Beaumont offices were significantly damaged. Initially, P&A staff went into 

shelters with two major goals: to assist in identifying individuals with disabilities to ensure their 

needs were identified and met; and to get an overview of the process in place to ensure that 

identification and access to services and supports happened routinely. Through shelter visits 

across the State, P&A staff responded to needs related to housing, assistive technology, 

transportation, medical services and mental health needs, Medicaid, emergency food stamps, 

protective services, family unification, special education, legal services, employment, child care, 

and case management.

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Hurricane Response by Grantees located outside the Gulf Coast Area

While the gulf coast grantees were “in the trenches,” providing daily services to individuals with 

disabilities affected by the hurricanes, grantees across the Nation also stepped in to provide relief 

and assistance wherever they were able. The following is an overview of some of the hurricane 

response activities throughout the country.

It is by no means a comprehensive account, nor does it address emergency preparedness and 

hurricane relief activities initiated more than six months after the hurricanes.

Arkansas P&A. The P&A sent a team out to shelters, left sign up sheets and posters, and shared 

information about P&A advocacy with agencies.

Arkansas UCEDD. The UCEDD developed resource lists for individuals working as crisis 

intervention staff. Included was information such as:

• A list of disability providers across the State;

• A list of aging providers (similar list of community-based providers who serve individuals 

who are elderly including those with disabilities);

• A list of local school district special education coordinators;

• A list of independent living centers;

• A list of organizations that respond to disability specific groups; and

• A list of locations where assistive technology is available or where durable medical 

equipment can be accessed.

These resource lists seemed to be the highest need and were disseminated via the National

Association of Social Workers.

District of Columbia Council: Efforts provided by the District of Columbia as a unit. Grantee 

actions and staff assignments were part of the overall services provided by the DHS as mandated 

by the District’s Emergency Management Plan. Those services included shelter, social services, 

health and mental health, housing and generally accommodating their immediate needs.

District of Columbia P&A: The P&A provided information and advocacy services at the DC 

Armory, a shelter housing several hundred Katrina evacuees.

District of Columbia UCEDD: UCEDD sent teams to San Antonio, Dallas, and Austin and 

coordinated with a team in Houston around children's mental health issues.

Idaho P&A: The P&A provided one senior advocate to the Louisiana P&A to assist in their 

efforts for four weeks.

Iowa Council: The Governor of Iowa positioned State agencies, along with private resources to 

accommodate 5000 evacuees initially. Preparations were made eventually for 1000 evacuees 

and resources were on stand-by. In the end, 19 evacuees came to Des Moines. Two of those

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were elderly with disabilities and were taken immediately to the hospital for care. One woman 

with a disability received assistance to find employment. This was accomplished through State 

agencies that provide direct services.

Iowa P&A: The P&A worked in concert with the Iowa Department of Human Services to be 

sure that accurate assessments were taking place on behalf of evacuees with disabilities arriving 

in Iowa, provided direct assistance in linking those evacuees with services for immediate needs, 

e.g., shelter, food, clothing, etc., and assisted evacuees with disabilities to continue meeting their 

programming needs through the transfer of waiver, Medicaid, Medicare revenue for which they 

were eligible. The director and staff of the P&A were present when the initial evacuees arrived in

Des Moines.

Kansas Council: The Council sent funds to Louisiana Families Helping Families, funded by the 

LA council. Funds were used to assist evacuees with disabilities and their families to find their 

own apartment/house.

Kansas UCEDD: The UCEDD worked closely with a family/parent support group in New 

Orleans (Pyramid Partners), which is a support and advocacy group for parents of children with 

developmental disabilities. Through one of the UCEDD centers this grantee established a 

Pyramid family relief fund and worked immediately with the co-directors of Pyramid to begin to 

trace Pyramid members.

Missouri Council: The Council sent funds to Louisiana Families to Families to support the DD 

Council’s efforts to identify evacuees with disabilities and provide them with services and 

supports.

Nebraska DD Network Combined: The three Nebraska grantees informed Red Cross and other 

emergency service of what the DD Network did and how to reach them. A check with Health and 

Human Service verified that no one who came to Nebraska was institutionalized. Faculty and

staff members provided counseling services to those arriving in Omaha and temporarily placed at 

the Omaha Civic Center. People needing psychotropic drugs were identified and medications

provided. The Council participated in a cross-disability group to identify issues prior to the 

arrival of the evacuees. They produced a list of resources and shared that with the local Red

Cross and the media to insure people were aware of how to contact needed resources. Agencies 

including the three network agencies met to coordinate across disabilities, inform responders 

about people with disabilities and facilitate referrals as needed.

Ohio UCEDD: The UCEDD took care of the medical needs of a family with twins with Spina

Bifida.

Pennsylvania Council: The Council sent funds to Louisiana.

Tennessee UCEDD: The UCEDD offered assistance to multiple State and local agencies, 

churches and other organizations involved in Katrina relief. Faculty and staff provided volunteer 

services on an individual basis in several areas including intake assistance and sorting of 

donations.

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Tennessee P&A: The P&A worked to meet the needs of individuals with disabilities staying in 

local shelters, and to make those shelters as comfortable as possible for everyone staying there. 

Efforts included providing TTY and interpreter services as well as coordinating mental health 

professionals’ visits to various shelters.

Utah P&A: The State received 570 evacuees. Three P&A staff with expertise in legal issues, 

short-term technical assistance, consumer issues, and systems went to Camp Williams to 

observe, monitor, talk with evacuees and work with Utah’s Departments of Health and Human 

Services to ensure the safety, well-being and basic service needs of people with disabilities and 

their families.

Vermont UCEDD: The UCEDD contributed to goods taken down by about 40 trucks from 

Vermont to Mississippi. It sent supplies (wheelchairs, walkers, etc.) to the Mississippi 

Independent Living Council.

West Virginia Council: The Council gave funding to the West Virginia P&A for their work 

with evacuees with disabilities in West Virginia.

The Working Conference on Emergency Management and Individuals with

Disabilities and the Elderly

 I In June 2006, ADD collaborated with the U.S. Department of Homeland Security (DHS) 

to present the Working Conference on Emergency Management and Individuals with

Disabilities and the Elderly. ADD sponsored the conference in cooperation with the 

Administration on Aging (AoA), Office on Disability, Family and Youth Services

Bureau, Children’s Bureau, Substance Abuse and Mental Health Services Administration 

(SAMHSA), Administration for Children and Families (ACF), the Social Security 

Administration (SSA), and DHS’ Office for Civil Rights and Civil Liberties.

This conference was unique both because of its content and its structure. This first of its kind 

conference was exceptional, and included presentations by key national leaders on the complex 

issues facing the disability and aging populations in the face of natural or man-made disasters. 

Senior officials from both HHS and DHS made keynote presentations and were joined by 

colleagues from other Federal agencies. Top experts from State and local governments and the 

private sector also addressed this conference.

The unique structure of the conference brought together Governor-appointed teams from each 

State to connect emergency management officials with key leaders from the disability and aging 

communities. These teams worked together during the conference to identify ways to integrate 

their work within their jurisdictions' emergency management framework. Senior officials from 

each of the Federal Emergency Management Agency’s Regions were present, which facilitated 

cooperative planning among State and Federal officials. This team structure allowed for 

identification and implementation of measurable outcomes and tracking systems in the States.

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Conference Participants included 217 delegates and 191 non-delegates for a total of 408 

attendees in the general assembly. This does not account for the additional speakers, topic 

discussants, facilitators, and others there in administrative capacity. Governors from 44 States 

sent delegations.

Topics of the Emergency Management Conference included:

• Day 1: Estimating populations and the viability of registries.

• Day 2: Accessible transportation and communication.

• Day 3: Coordination and restoration of services.

The goals of the conference for State delegations were to:

• Connect representatives from homeland security, emergency management, special needs, 

aging and disability with each other,

• Have an opportunity to work together and lay out how to strengthen the capacity of their

States to assist target populations in an emergency or disaster,

• Take their consensus-based ideas back to their Governors, and

• Work together for the adoption and implementation of these ideas statewide.

The goals for Federal agencies and national organizations:

Just as State delegations and Regional Groups worked through how to address specific topics, 

meetings of Federal and national groups each afternoon allowed these Government agencies to 

work through the challenge of determining how to facilitate these activities by working together 

at the national level.

Key findings of the Conference:

The key findings of the conference are issues repeatedly identified by State delegates, 

discussants, and speakers. The findings have implications for the Federal government, and 

indicate priority areas where efforts can be focused in further integrating disability and elderly 

issues into emergency plans. While many of these issues are consistent with what has already 

been observed by other entities/reports and are already being addressed by DHS, HHS, and other 

agencies, this conference further demonstrated the benefit of the cross-pollination of ideas, 

actions, and meaningful outcomes across agency and State lines.

Key Findings Related to Guidance and Policy

• Develop a federal term, definition, or model to signify “special needs populations” that can 

be used as a guide for State and local authorities in emergency planning. The definition 

should be based on a functional model rather than a medical model, and be flexible and 

adaptable to accommodate State/local planning.

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• Increase planning support to the local level. Use toolkits, planning templates, best practices, 

and models.

• Develop national standards and reimbursement policy for special needs shelters (i.e., medical 

needs shelters) for State and local authorities.

• Develop clear guidance and best practices related to the creation, maintenance, and use of 

registries.

• Clarify how HIPAA applies to registries in emergency situations.

• Ensure that Medicaid waivers that allow for State-to-State services are part of emergency 

plans.

• Allow Medicaid reimbursement funds to follow the person. In some States there are 

Medicaid protocols which allow the funds to follow the person across agencies in State, but 

no such provisions which provide reimbursement coverage across States.

Key Findings Related to Preparedness and Planning

• Integrate disability and senior organizations and agencies into emergency management 

programs. Reach out to non-traditional disaster agencies, organizations and individuals from 

within these networks.

• Improve communication and coordination among Federal, region, State, Tribal, and local 

agencies in the emergency management, disability, and aging fields.

• Prioritize planning for people with disabilities and the elderly in emergency management.

• Include people with disabilities, the elderly, and caregivers in communication plans and 

public information campaigns.

• Involve the disability and elderly communities in drills and exercises.

• Work with public and private insurance programs about access to prescription drugs and 

policies that put limits on the supply of these drugs.

Key Findings Related to Research and Development

• Conduct more research in the area of emergency planning for people with disabilities and the 

elderly. For example, this would help identify models for issues such as registries,

sheltering, evacuation, etc.

• Maintain the conference website [www.add-em-conf.com].

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• Increase funding and flexibility in funding streams for planning around disability and elderly 

issues.

• Use existing systems for sharing resources, such as the Emergency Mutual Aid Compact 

(EMAC), and incorporate this into planning for people with disabilities and the elderly. This 

will allow States to share resources during emergencies/disasters.

• Increase funding for accessible temporary and long-term housing post-disasters.

The delegates to the conference made a commitment to submit quarterly progress reports for at 

least one year. These reports, and additional conference information and resources, are available 

at http://www.add-em-conf.com/.

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Chapter 9: 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 a grantee wants to tackle 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 crossagency 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 2005 and 2006, ADD funded several contracts that provided technical assistance 

and/or training to grantees, and to ADD as a whole, including the following:

 The National Association of Councils on Developmental Disabilities (NACDD) provides 

technical assistance to State Developmental Disabilities Councils;

 The National Association of Protection and Advocacy Systems/Training and Advocacy 

Support Center (NAPAS [Currently the National Disability Rights Network]/TASC) 

provides technical assistance to State Proection and Advocacy Agencies;

 The Association of University Centers on Disabilities (AUCD) provides technical 

assistance to University Centers for Excellence in Developmental Disabilities;

 EST-Technologies provides provides logistical support to ADD, including for the

Emergency Management Conference;

 BETAH provides technical assistance to Family Support 360 projects and Youth Centers; 

 Z-Tech Corporation maintains the ADD input into Online Data Collection System

(OLDC), maintains ADD’s website, and produces all of our publications ; and

 Westat is designing ADD’s independent evaluation of Councils, P&As, and UCEDDs.

Other sources of technical assistance that may be arranged directly by ADD may come from or 

through any of 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

The ADD Technical Assistance Contract with the National Association of Councils on 

Developmental Disabilities (NACDD) helps to improve performance, compliance and program 

outcomes across the network of State Councils. Self-advocates, family members and Council

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staff work collaboratively to produce a variety of products including a Council member guide for 

self-advocates and family members, workshops on Council leadership, and a fiscal guide for 

Council staff and members.

The contract utilizes a variety of methodologies for communication and sharing of information. 

These include listservs, topic specific conference calls, a national face-to-face conference, online tutorials, and printed materials. In addition, the contract focuses on communities of practice 

in the areas of Council membership, fiscal policies and procedures, and data collection.

The contract also maintains an on-line library of systems change strategies, legislative advocacy, 

support to self-advocates, and demonstration projects, as well as organizational and operational 

practices. This information is generated by the Councils themselves.

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.

In fulfillment of its obligations, the contractor undertook the following activities: governance 

(with input from the P&A Community), publications for the P&As, trainings, needs assessments, 

website and listserv management, reporting assistance, and professional development.

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

Through the contract with the Association of University Centers on Disabilities (AUCD), 

UCEDDs are provided regular updates and information about issues pertinent to developmental 

disabilities. AUCD, a membership organization that supports and promotes a national network of

university-based interdisciplinary programs, has serves as a technical assistance contractor for 

ADD for 20 years. The purpose of the current TA contract is to improve program performance, 

statutory compliance, and program outcomes across the national network of UCEDDs. ADD 

staff also provides technical assistance on an individualized basis. In addition, technical 

assistance visits are conducted to address individual program needs.

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 (FS 360) grantees. BETAH 

continued to provide these services in Fiscal Years 2005 and 2006. The training and technical 

assistance is designed to share knowledge, promote collaboration and understanding, build skills

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and facilitate collaborative problem solving amongst the FS 360 grantees. This is done through 

the FS 360 website, conference calls, the annual Technical Assistance Institute, Regional 

Trainings, research and appropriate materials. BETAH also facilitates linkages between FS 360 

projects and 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 2005 and 2006, 

information was gathered, through Program Performance Reports, from 118 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.

Independent Evaluation

In September 2005, ADD awarded a contract to Westat to conduct Phase I of an independent 

evaluation of the State DD Network. It is aimed at providing feedback to ADD to help improve 

the effectiveness of its programs and policies. It will also serve as a decision-making tool for 

ADD to promote accountability to the public. Phase I of the independent evaluation project 

involves the development of measurement tools for the study and a pilot study. ADD is 

conducting the independent evaluation based on feedback from the Program Assessment Rating 

Tool (PART).

The focus of Westat’s work in the first year was on developing DRAFT performance standards 

for each ADD grant program (Councils, P&As, and UCEDDs), as well as for collaboration. To 

do this, Westat convened working groups for each of the ADD grant programs (DD Councils, 

P&As, and UCEDDs), as well as a collaboration working group to gather information for 

developing the draft performance standards. Through the working groups, Westat compiled a 

large amount of information on the ADD grant programs and on collaboration.

When completed, the independent evaluation will be a high quality, unbiased evaluation to 

demonstrate actual impact on the well-being of individuals with developmental disabilities and 

their families that can be attributed to grantees.

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 2005-2006.

 For OMB, ADD’s Commissioner co-chairs a working group to simplify data collection 

across eight federal Protection and Advocacy Systems grant programs.

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

 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 June 2006, ADD collaborated with the U.S. Department of Homeland Security (DHS) 

to present the Working Conference on Emergency Management and Individuals with 

Disabilities and the Elderly. ADD sponsored the conference in cooperation with the 

Administration on Aging (AoA), Office on Disability, Family and Youth Services Bureau, 

Children’s Bureau, Substance Abuse and Mental Health Services Administration 

(SAMHSA), Administration for Children and Families (ACF), the Social Security 

Administration (SSA), and DHS’Office for Civil Rights and Civil Liberties.

The Office on Disability (OD) advises the Secretary of HHS on disability issues and is charged 

with leading the HHS New Freedom Initiative (NFI). The broader mission of the Office is to 

oversee the implementation and coordination of disability programs, policies, and special 

initiatives. The OD heightens the interaction of programs within HHS and with Federal, State, 

local government entities and private sector, non-government partners, and supports plans and 

initiatives designed to tear down barriers facing people with disabilities, preventing them from 

full participation and contribution in community life. The Office on Disability facilitates 

numerous interagency and interdepartmental initiatives for which ADD is a partner, including

the New Freedom Initiative Work Group which meets monthly providing timely disability based

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

information and to track the efforts of different HHS agencies on projects supporting the NFI. 

Other initiatives for which the ADD and OD partner in include: addressing the needs of children 

and youth with co-occurring developmental disabilities and emotional/substance abuse disorders; 

the HHS department-wide medical home initiative for persons with disabilities to support an 

integrated and coordinated disability based medical home program; emergency preparedness 

addressing the health and human service needs of persons with disabilities during and after an 

emergency; the Office on Disability’s comprehensive service system initiative addressing young 

adults with disabilities; and the December 2007 Ninth International Congress on Children and 

Youth with Special Needs.

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

Chapter 10: New Freedom Initiative

The New Freedom Initiative, one of President George W. Bush’s first major acts of office, is an 

embodiment of the philosophy upon which ADD is built: The American Dream Belongs to 

Everyone.

The New Freedom Initiative was set into motion with the goal of tearing down the barriers to 

equality that face many of the 54 million Americans with disabilities. It is an important step in 

ensuring that all Americans with disabilities can participate more fully in the life of their 

communities and of our country.

This initiative supports States' efforts to meet the goals of the Olmstead v. L.C. Supreme Court 

decision (see below) issued in July 1999 that requires States to administer services, programs, 

and activities "in the most integrated setting appropriate to the needs of qualified individuals 

with disabilities."

New Freedom Initiative

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.

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.

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

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

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; and 

f) Expand transportation options.

ADD believes that the intent and philosophy of the New Freedom Initiative must be incorporated 

into the daily actions, programs, policies, and attitudes of this Nation. All of ADD’s activities 

and the activities of its grantees support the New Freedom Initiative. Through enduring 

commitment to these goals and ideals, we will continue to break down barriers, and increase the 

ability of Americans with disabilities to participate more fully in the life of their communities

and of our country.

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