Biennial Report to Congress, the President, and 

the National Council on Disability

Fiscal Years 2011 and 2012 

Prepared by

Administration on Intellectual and Developmental Disabilities

Administration for Community Living

U.S. Department of Health and Human Services 
2 
Contents

Executive Summary ...................................................................................................................................... 5

Introduction: Administration on Intellectual and Development Disabilities and the Developmental 

Disabilities Act............................................................................................................................................10

Chapter 1: The Developmental Disabilities Network .................................................................................13

 State Councils on Developmental Disabilities (DDCs) .......................................................................13

 Protection and Advocacy Systems (P&As) .........................................................................................14

 University Centers for Excellence in Developmental Disabilities (UCEDDs)....................................15 

 Projects of National Significance (PNS)..............................................................................................16

Chapter 2: Supporting the Core Values of the Developmental Disabilities Act.........................................18

 Meeting the Goals of the Developmental Disabilities Act...................................................................18

National Residential Information System Project (RISP)...................................................................19

State of the States in Developmental Disabilities...............................................................................20

Access to Integrated Employment: National Data Collection on Day and Employment Services for 

Citizens with Developmental Disabilities...........................................................................................21 

Chapter 3: Self-Determination................................................................................. ......22

Chapter 4: Independence .............................................................................................................................26

Chapter 5: Productivity...............................................................................................................................31 

Chapter 6: Integration and Inclusion ...........................................................................................................34

Quality Assurance and Community Supports .....................................................................................34

Family Support Initiatives...................................................................................................................36

Chapter 7: Training and Technical Assistance ...........................................................................................42

Information Collection and Dissemination.........................................................................................48

Chapter 8: Interagency Collaboration .........................................................................................................49

Conclusion: Envisioning the Future............................................................................................................52

Appendix: Program Performance Data .......................................................................................................54

 Protection & Advocacy Agencies (P&As) — Selected Program Data................................................55

 Developmental Disability Councils (Councils) — Selected Program Data.........................................56

 University Centers of Excellence in Developmental Disabilities Education, Research and Service 

(UCEDDs) — Selected Program Data....................................................................................................58 

Appendix: The Protection and Advocacy for Individuals with Mental Illness (PAIMI) Program Activities 

Report For Fiscal Years 2011 And 2012 .................................................................................................... 60

3
4 
Executive Summary

Throughout its history, the Administration on Intellectual and Developmental Disabilities 

(AIDD) has sought to enable individuals with developmental disabilities across the United States 

and its territories to live their best, most fulfilling lives. To help meet these needs, in 2012, the 

U.S. Department of Health and Human Services created a new organization, the Administration 

for Community Living (ACL), to help all Americans—including people with disabilities and 

older adults—to be better able to live at home with the supports they need, participating in 

communities that value their contributions. Comprised of AIDD, the Office on Disability and the 

Administration on Aging (AoA), ACL is charged with working with states, tribes, community 

providers, universities, nonprofit organizations, businesses, people with disabilities and families 

to help people with disabilities and older adults live in their homes and fully participate in their 

communities.

Within this framework, among other responsibilities, AIDD oversees four grant programs 

authorized by the Developmental Disabilities Assistance and Bill of Rights Act of 2000 (DD 

Act). The purpose of the DD Act 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 the Act. 

The DD Act also requires the Secretary to submit a biennial report on the goals and outcomes for 

these programs. This report identifies the goals and outcomes of AIDD’s programs during fiscal 

years 2011 and 2012. 

AIDD’s four grantee programs established by the DD Act are responsible for advancing the 

mandate to provide individuals with developmental disabilities with the information, skills, 

opportunities and support to make informed choices and decisions about their lives; live in 

homes and communities where they can exercise their full rights and responsibilities as citizens; 

pursue meaningful and productive lives; and contribute to their families, communities, states, 

and the nation. 

These four grant programs are: 

• State Councils on Developmental Disabilities (DDCs), which work at the state level to 

advance the interests of individuals with developmental disabilities and promote policies 

and practices that fully meet the needs of all Americans. DDCs are composed of 

individuals with developmental disabilities, family members, advocates and state agency 

representatives, and often focus on empowering individuals with developmental 

disabilities through activities that teach self-advocacy skills and support selfdetermination. 

• Protection and Advocacy Systems (P&As), which work to protect individuals with 

developmental disabilities from abuse and neglect by empowering them and advocating 

5 
on their behalf. P&As are dedicated to the ongoing fight for the personal and civil rights 

of individuals with developmental disabilities. They provide legal support and other 

advocacy services (including mediation, counseling, conflict resolution, and litigation) to 

traditionally unserved or underserved populations to help them navigate the legal system 

to achieve resolution and foster systems change. 

• University Centers for Excellence in Developmental Disabilities Education, 

Research and Service (UCEDDs), which are affiliated with universities and represent an 

expansive national resource for addressing issues, building a professional workforce, 

finding solutions and advancing research related to the needs of individuals with 

developmental disabilities and their families. The UCEDD program is framed by four 

core functions: interdisciplinary pre-service preparation and continuing education of 

students and fellows; research; information dissemination; and community services, 

which include model services, training, technical assistance, and demonstrations.

• Projects of National Significance (PNS), which are often short-term endeavors focusing 

on issues that are of national importance to the developmental disabilities community, 

funding projects that ensure that services meet the needs of people with developmental 

disabilities. PNS funds have supported families, increased community living options, 

developed quality assurance standards, assisted with family leadership development, and 

increased opportunities for self-advocate involvement in system change initiatives. PNS 

funds have also supported long-term data collection projects that help policymakers, 

service providers, individuals with developmental disabilities and their families make the 

most informed policy and individual care decisions. 

The first three of these grantee programs exist in each state and territory and comprise what is 

referred to as the Developmental Disabilities network in their respective state or territory. The 

fourth grantee program, Projects of National Significance, focuses on nationally recognized and 

emerging needs. They support the development of national and state policy that enhance the 

independence, productivity, inclusion and integration into the community for people with 

developmental disabilities.

Through the grant programs, technical assistance and interagency collaboration, AIDD worked 

during FY 2011 and FY 2012, as it has in the past, to embody the core values of the DD Act — 

self-determination, independence, productivity and inclusion and integration in all facets of 

community: 

• Self-determination is represented by successful self-advocacy trainings and conferences, 

and the activities of the National Youth Leadership Network and the National Training 

Initiative for Self-Determination to encourage individuals with developmental disabilities 

and their families to advocate for equal rights and inclusion. For example, in 2011 and 12 

a consortium of UCEDD grantees continued work under the National Gateway to SelfDetermination project, which included a website that provides self-advocates, 

professionals, policy-makers and the general public access to current best practices in 

enhancing self-determination for people with intellectual and developmental disabilities. 

6 
• Independence is represented by strides made in the areas of community living and 

housing through victories in the court system and the successful implementation of 

universal design concepts. It is also advanced in the area of health care as a result of a 

settlement agreement that upholds the Olmstead v. L.C.1 decision in Georgia hospital 

settings, which allows individuals with developmental disabilities to receive public health 

care services in the most integrated settings appropriate to their needs. In addition, 

independence is represented in education by programs that increase opportunities for 

educational advancement in university settings. For example, the Learning Academy at 

the University of South Florida (USF) is a two-year, four-semester transitional experience 

designed to help students with Autism Spectrum Disorder achieve a life of opportunity, 

independence and success. 

• Productivity is exemplified by programs that encourage gainful, meaningful 

employment and development of job skills. In the past two fiscal years, DDCs whose 

work included an emphasis on employment reported that they have assisted more than 

7,200 Americans with disabilities to either maintain or obtain jobs of their choice. 

Productivity was also supported through strides made in securing access to technology 

that enables individuals to participate equally in activities. AIDD continued to invest in the 

national study Access to Integrated Employment conducted by the Institute for Community 

Inclusion (ICI) at the University of Massachusetts Boston. The 2012 report provided statistics 

over a 20-year period from several national datasets that address the status of 

employment and economic self-sufficiency for individuals with DD. Overall, the findings 

indicate that individuals with developmental disabilities have higher levels of 

unemployment, underemployment, low wages, and poverty compared to those without 

disabilities.

 . 

• Integration and inclusion are represented by quality assurance and community activities 

that promote supports and services that make it possible for individuals with 

developmental disabilities to participate in society. These values are also represented in 

the National Residential Information System Project and State of the States in 

Developmental Disabilities, two projects that analyze current conditions for Americans 

living with developmental disabilities. In addition, Family Support 360 projects provide 

opportunities to create one-stop centers to assist unserved and underserved families of 

individuals with developmental disabilities, improve community capacity to support these 

families, and encourage systemic change. In FY 2011 and FY 2012, Family Support 360 

projects served 1,773 families.

2

AIDD is also involved in technical assistance that supports its mission and mandate. These 

technical assistance activities help grantees address problems that cross state lines or respond to 

the needs of clients, and make efficient use of funding. Technical assistance activities include 

1

Olmstead v. L.C. is a Supreme Court ruling made in 1999 that requires states to eliminate unnecessary segregation of individuals with disabilities

in the delivery of public services, and to ensure that individuals with disabilities receive public services in the most integrated setting appropriate 

to their needs. http://www.ada.gov/olmstead/index.htm 2 Compiled from year-end reports from all FS360 grantees.

7 

 
trainings, information dissemination, website maintenance and other support. In FY 2011 and 

FY 2012, AIDD provided training and technical assistance to its grantee programs through grants 

and contracts with a number of organizations: 

• The Information and Technical Assistance Center for Councils on Developmental 

Disabilities (iTACC), operated under a grant to the National Association of Councils on 

Developmental Disabilities, provides technical assistance to DDCs. Through iTACC, 

NACDD assisted the Council members, staff and executive directors with access to 

information, technical assistance and training resources quickly. In FY 2011, 189 

requests were received and completed by iTACC staff and in FY 2012, 266 requests were 

received and completed.

• The Training and Advocacy Support Center (TASC), operated under contract by the 

National Disability Rights Network, (NDRN) provides technical assistance to P&As. For 

example, TASC staff members provide consultation via e-mail and phone on disabilities 

law, organizational management, and board management. Additionally, staff responded 

to more than 1500 programmatic issues per year, especially with regard to abuse, neglect, 

seclusion, restraint, community integration and ADA compliance. Staff also responded 

to nearly 400 P&A management related issues per year.

• The UCEDD Resource Center, operated under contract by the Association of University 

Centers on Disabilities (AUCD), provides technical assistance to UCEDDs. Through this 

project, AUCD provided a number of national training events on topics such as youth 

transition, post-secondary education opportunities for individuals with intellectual and 

developmental disabilities, community integration, alternate assessments, and AIDD 

reporting requirements. In 2012, AUCD launched first ever Leadership Institute to better 

support the development of leaders for the UCEDD network. In partnership with The 

National Leadership Consortium on Developmental Disabilities at the University of 

Delaware, AUCD offered a week long intensive executive development program to 24 

new UCEDD directors, Assistant Directors, Program Directors and others in UCEDDs 

who, in the opinion of the UCEDD's leadership, demonstrate both potential and 

willingness to assume senior leadership roles in the UCEDD network. 

• BETAH Associates provides technical assistance to PNS family support grantees. This 

contract promotes knowledge sharing, builds skills, and facilitates problem-solving 

among grantees. As part of these efforts, in 2012, BETAH held the Family Support 360 

Technical Assistance Institute, an event that received positive ratings from grantees 

regarding its effectiveness.

• The Institute for Community Inclusion (ICI) provides technical assistance to eight 

Partnerships in Employment Systems Change projects (PIE) focused on assisting states 

with systems efforts and identifying, developing, and promoting policies and practices to 

improve transition, post-secondary and competitive employment outcomes for 

individuals with intellectual and developmental disabilities. Technical assistance 

activities included site visits to assist states with incorporating elements of the high 

8 
performing states framework into their systems change efforts as well as to ensure project 

activities focused on systems change efforts. Additional technical assistance efforts 

included monthly coaching calls with PIE project managers, facilitation of peer-to peer 

information exchange, bi-monthly E-news distributed to grantees and stakeholders, 

assistance with legislation and regulations on employment, transition and postsecondary 

options. ICI also facilitated web-based network meeting on topics that included 

Leadership in Transition and Employment, Employment First, Systems Change and 

Sustainability, Medicaid Funding for Employment Services 

AIDD undertook a number of partnerships and collaborative efforts, including work with the 

U.S. Department of Education, U.S. Department of Housing and Urban Development, 

Interagency Autism Coordinating Committee, and with the Office of Child Care, Office of Head 

Start, and the Office of Child Abuse and Neglect in the Administration for Children and 

Families. While much work has been done to improve the lives of individuals with 

developmental disabilities, AIDD is looking toward the future. AIDD conducted a series of 

listening sessions, conferences and other events to inform the development of the AIDD strategic 

framework. AIDD’s mission and the DD Act’s mandates remain the primary focus driving 

AIDD’s and its grantees’ work across the United States and its territories, with the paramount 

goal of enabling successful lives for individuals with developmental disabilities.

This report also includes information from the Center for Mental Health Services (CMHS) of the 

Substance Abuse and Mental Health Services Administration (SAMHSA) on the Protection and 

Advocacy for Individuals with Mental Illness grant program. Section 114(a)(1) of the Protection 

and Advocacy for Individuals with Mental Illness Act of 1986 requires that the AIDD Report 

include a statement describing the activities, accomplishments, and expenditures of State 

Protection and Advocacy Systems which serve individuals with mental illness. This statement is 

prepared by CMHS, SAMHSA and is being forwarded for inclusion in this Report as an 

Appendix. 

9 
Introduction: AIDD and the DD Act

The Administration on Intellectual and Developmental Disabilities (AIDD) is dedicated to 

ensuring that individuals with developmental disabilities and their families are able to fully 

participate in and contribute to all aspects of community life in the United States and its 

territories.

AIDD’s work supports approaches that shape attitudes, raise expectations, change outdated or 

broken systems and empower individuals with disabilities to pursue the lives they imagine for 

themselves. To that end, AIDD provides financial and leadership support to organizations in 

every state and territory in the United States. These bodies assist individuals with developmental 

disabilities of all ages and their families obtain the support they need to achieve all aspects of a 

life envisioned and defined by the DD Act. 

DD Act: Ensuring Access and Support

The Developmental Disabilities Assistance and Bill of Rights Act of 2000 (DD Act) ensures that 

individuals with developmental disabilities and their families have access to community-based 

services and supports to promote opportunities for independence, productivity and inclusion 

through culturally competent programs established and authorized by the law. 

The DD Act establishes four grant programs that are overseen by AIDD: State Councils on 

Developmental Disabilities (DDCs); State Protection and Advocacy Systems (P&As); 

University Centers for Excellence in Developmental Disabilities Education, Research and 

Service (UCEDDs); and Projects of National Significance (PNS). 

These grantees ensure that individuals with developmental disabilities have access to 

opportunities and the necessary supports to be included in community life, have interdependent 

relationships, live in homes and neighborhoods of their choosing, and make contributions to their 

families, communities, states and the nation. Individuals with developmental disabilities and 

their family members influence the grantees and their actions in a variety of ways - through 

public forums, membership on boards, committees and councils, partnership on projects, etc. 

This engagement with individuals with developmental disabilities and family members helps 

grantees determine what areas to invest in and how to use their AIDD funding. Each grantee has 

its own process for choosing these areas. Some grantees use public forums to assess the needs of 

individuals with developmental disabilities. Many of these forums are conducted as a 

collaborative effort across the DD network. P&As are able to use information from their clientinitiated work, which means that someone approaches them with a problem or issue that needs 

solving on a case-by-case basis. They analyze this information to identify trends and areas 

needing to be prioritized. 

Through research, education, advocacy and the implementation of diverse projects, AIDD and its 

grantees help individuals with developmental disabilities receive quality care and education, 

protect their health, excel in careers of their choice, travel freely, live independently, participate 

in activities that they find fulfilling, and make informed choices about the kinds of services and 

supports they receive.

10 
Meeting National Policy Goals 

AIDD’s work significantly relates to the current policy efforts in place to enhance the lives of the 

estimated five million Americans with developmental disabilities.3 AIDD has been working on 

strengthening health care and supports, increasing employment opportunities, expanding 

educational opportunities, protecting civil rights, promoting access to community living, and 

supporting the development and use of accessible technologies. 

Visions for the Future

All Americans, including persons with disabilities and older adults, should be able to live at 

home with the supports they need. To help support this vision and meet these needs, in 2012 the 

U.S. Department of Health and Human Services created the Administration for Community 

Living (ACL). ACL brings together the Administration on Intellectual and Developmental 

Disabilities, the HHS Office on Disability, and the Administration on Aging to serve as the 

Federal agency responsible for increasing access to community supports, while focusing 

attention and resources on the unique needs of people with disabilities and older Americans. 

ACL is charged with working with states, tribes, community providers, universities, nonprofit 

organizations, businesses and families to maximize the independence, well-being, and health of 

older adults, people with disabilities, and their families and caregivers. ACL’s Mission is to 

maximize the independence, well-being, and health of older adults, people with disabilities, and 

their families and caregivers. And ACL’s Vision is that all people, regardless of age and 

disability, live with dignity, make their own choices, and participate fully in society.

AIDD’s priorities within ACL’s strategic framework include: 

• Ensuring the continued protection of the rights of individuals with developmental 

disabilities and preventing their abuse, neglect and exploitation; 

• Empowering individuals with developmental disabilities and their families to access 

home and community-based services and supports that ensure opportunity for full and 

meaningful community participation;

• Promoting “employment first” as a key strategy for individuals with developmental 

disabilities to be contributing and productive members of society participating in the 

competitive, integrated workforce; 

• Supporting the advocacy efforts of individuals with developmental disabilities in order to 

ensure participation in system and service delivery design; and 

• Maintaining effective and responsive management of the DD Act programs.

More information about ACL’s strategic plan for 2013-2018 and AIDD’s strategic framework 

for 2012 – 2017 can be found at http://www.acl.gov/About_ACL/StrategicPlan/Index.aspx. 

3

National Aggregated Data from 2011 Council State Plans.

11 

 
Biennial Report (FY 2011 and FY 2012) 

The Biennial Report to Congress, the President and the National Council on Disability is a 

requirement of the DD Act. This report presents an overview of achievements by AIDD’s 

grantees during FY 2011 and FY 2012 as reported by the grantees in their annual reports to 

AIDD. These achievements were reached using funding from AIDD, state and local communities 

and other sources, and reflect the core values of the Administration: self-determination, 

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

This report offers examples of successful implementation of each of the core values as they have 

been achieved by AIDD grantees, as well as through training and technical assistance programs 

and interagency collaboration. 

12 
Chapter 1: The Developmental Disabilities Network

Developmental disabilities grant programs authorized by the DD Act include three state- and 

territory-based programs that collaborate with each other as well as with other entities in their 

respective states and territory: DDCs, P&As and the national network of UCEDDs. In each 

state4

, these programs form a developmental disabilities network (DD network) that is uniquely 

positioned to meet the diverse needs of individuals with developmental disabilities in that state. 

A fourth program, Projects of National Significance (PNS), is directed toward current and 

emerging needs of individuals with developmental disabilities. These nationwide projects work 

across the DD networks.

While each grantee within the DD networks serves specific and unique purposes, these entities 

were established with overlapping goals that facilitate collaboration and interconnectivity among 

the different units. Because of its structure, each grantee within a state’s DD network is able to 

work cross-functionally to effectively and efficiently fulfill the mandates of the DD Act and its 

core values: self-determination, independence, productivity, integration and inclusion in all 

facets of the community. 

State Councils on Developmental Disabilities (DDCs)

There are 56 DDCs in the United States, its territories, and the District of Columbia. DDCs are 

independent, self-governing organizations that work at the state level to advance the interests of 

individuals with developmental disabilities and promote policies and practices that fully meet the 

needs of all Americans. 

DDCs are committed to the advancement of public policy that helps individuals with 

developmental disabilities gain more control over their lives. They are composed of individuals 

with developmental disabilities, family members, advocates and state agency representatives

appointed by Governors. In part because of their diverse membership, DDCs analyze and 

improve systems, services and trends within a state, and ensure that the voices of people with 

developmental disabilities and their families are heard.

Empowerment through self-advocacy. DDCs often focus on empowering individuals with 

developmental disabilities through activities that teach self-advocacy skills. These activities 

include: 

• Providing workshops that teach individuals with developmental disabilities how to 

advocate for their rights and holding leadership academies that teach them how to mentor 

other individuals; 

• Supporting the growth of local self-advocacy organizations; 

• Providing programs that teach young people advocacy and activism strategies to help 

them influence policies that affect their choices (e.g., education and employment). 

4 In this context, “state” refers to the 50 States, the United States territories, and the District of Columbia.

13 

 
By empowering individuals and their families to advocate not only for themselves, but also to 

seek long-term solutions through systems change, DDCs are creating an environment of selfsufficiency, self-determination, inclusion, and acceptance, both today and for future generations. 

(For details on self-advocacy efforts funded by DDCs, see Chapter 3, Self-Determination.) 

State-level planning and goal implementation. To serve their communities, DDCs design fiveyear state plans that address new ways of improving service delivery so that individuals with 

developmental disabilities have the opportunity to exercise their rights and reach their personal 

goals. To carry out the state plans and their respective missions, DDCs work with different 

groups in many ways to achieve the goals of the DD Act, including: 

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

leadership roles (by law, more than 60 percent of a DDC’s membership must consist of 

individuals with developmental disabilities or their family members); 

• 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. 

For example, the Massachusetts DDC partnered with the Arc of Massachusetts, an advocacy 

organization for people with intellectual and developmental disabilities, to form a coalition of 

statewide cross-disability organizations called the Massachusetts Alliance for 21st Century 

Disability Policy partnership (MA21). This coalition worked to educate individuals, families and 

policymakers on the principles of MA21. 

Protection & Advocacy Systems (P&As) 

Each P&A works to empower, protect and advocate on behalf of individuals with developmental 

disabilities and their families. There are 57 P&As in the United States, its territories, and the 

District of Columbia. There is a P&A for the Native American community. Each P&A is 

independent of service-providing agencies. 

Protecting individuals with developmental disabilities from abuse and neglect is at the core of the 

P&A mission. Along with the other AIDD grantees, P&As are dedicated to the ongoing fight for 

the personal and civil rights of individuals with developmental disabilities. P&As provide legal 

support to individuals with developmental disabilities, as well as other populations of persons 

with disabilities, to help them navigate the legal system to achieve resolution. P&As ensure that 

individuals with disabilities have the ability to exercise their rights to make choices, contribute to 

society and live independently. 

Diverse focus. While their focus is most often legal, P&As also engage in a full range of other 

efforts to promote the rights of individuals with developmental disabilities. P&As often provide 

information and referrals, as well as training and technical assistance to service providers, state 

legislators and other policymakers. They also conduct self-advocacy trainings and raise public 

14 
awareness of legal and social issues affecting individuals with developmental disabilities and 

their families.

Working toward inclusive education. P&As also focus on educational issues, working to 

ensure that students receive an appropriate education in an integrated and inclusive setting. 

Historically, the majority of the workload and cases handled by P&As has dealt with securing an 

education in an inclusive setting for children with developmental disabilities.

Olmstead and other cases. P&As have been involved in a significant number of landmark cases 

and work closely with other partners, especially DDCs and UCEDDs. P&As work to implement 

the U.S. Supreme Court’s 1999 decision in Olmstead v. L.C., which requires states to eliminate 

unnecessary segregation of people with disabilities and ensure that they receive services in the 

most integrated setting.

University Centers for Excellence in Developmental Disabilities Education, Research and 

Service (UCEDDs) 

The 67 UCEDD grants are spread among 68 centers across the United States and its territories. 

UCEDDs differ from the other grantees established by the DD Act in that they are affiliated with 

universities. This affiliation positions UCEDDs to serve as liaisons between academia and the 

community. 

This nationwide network of independent but interconnected centers represents an expansive 

national resource for addressing issues, finding solutions, improving the quality of the 

workforce, and advancing research related to the needs of individuals with developmental 

disabilities and their families. Four core functions frame the UCEDD program:

• Interdisciplinary pre-service preparation and continuing education of students and 

fellows. 

• Research. 

• Information dissemination. 

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

demonstration services. 

Examples of the UCEDDs’ work include the efforts of the Washington UCEDD, which 

collaborates with numerous agencies to provide direct services such as job development, job 

placement, job training, and continued employment support (see Chapter 5, Productivity). In 

Tennessee, the Vanderbilt Kennedy Center UCEDD developed and implemented a 

postsecondary education program for students with intellectual disabilities at Vanderbilt 

University. This two-year nonresidential certification program is the first and only program of its 

kind in the state (see Chapter 6, Integration and Inclusion).

AIDD awards UCEDDs a discretionary grant to public service units of universities, or public or 

nonprofit entities associated with universities. AIDD funding is used to support the 

organizational foundation of UCEDDs, which allows them to pursue other sources of support to 

carry out various activities. UCEDDs leverage funding from a variety of sources, including 

15 
federal, state and local agencies; private foundations and donations; and charging fees for 

services.

Projects of National Significance (PNS) 

Projects of National Significance (PNS) focus on nationally recognized and emerging needs, 

supporting the development of national and state policy that enhances the independence, 

productivity, inclusion and integration into the community for people with developmental 

disabilities. 

In FY 2011, AIDD awarded 43 PNS grants, 10 of which were new that year. PNS funds create 

grants, contracts and cooperative agreements to public and private nonprofit organizations to 

create opportunities for individuals with developmental disabilities to directly and fully 

contribute to and participate in all facets of community life. 

PNS funding supports the development of national and state policies that reinforce and promote 

the self-determination, independence, productivity, and integration and inclusion of individuals 

with developmental disabilities in all facets of community life. These projects are supported by 

families, guardians, advocates and communities, and include family support activities, data 

collection, technical assistance to UCEDDs and DDCs, and other projects that hold promise to 

expand or improve opportunities for individuals with disabilities. 

Short-term projects, long-term differences. Projects are typically short-term (one to five 

years) and focus on the most pressing issues affecting people with developmental disabilities and 

their families. Over the years, PNS funds have supported families and caregivers, increased 

community living options, developed quality assurance standards, assisted with family leadership 

development, and increased opportunities for self-advocate involvement in system change 

initiatives. 

Longitudinal data studies. PNS funds have also supported long-term data collection projects 

that help policymakers, service providers, individuals with developmental disabilities and their 

families make the most informed policy and individual care decisions. These studies look beyond 

data collected by each individual grantee within their specific state and allow for an overarching, higher-level evaluation of the conditions of individuals with developmental disabilities 

within the United States.

Demonstrating and supporting emerging needs and best practices. The projects are intended 

to enable more rapid responses to emerging issues by targeting an unserved or underserved area, 

with the intent of eventually implementing programs on a broader, national level. Examples of 

PNS projects include: 

• Data collection and analysis to track longitudinal trends significant to individuals with 

intellectual and developmental disabilities and their families, such as the residential and 

employment service in each state. For example, the National Residential Information 

System Project continues more than 20 years of analysis of annual state-by-state and 

national statistics and analysis on residential services for people with developmental 

disabilities (see Chapter 2, Supporting the Core Values of the DD Act).

16 
• Programs to assist youth with developmental disabilities in the transition from school to 

the workforce and postsecondary education opportunities. (See Chapter 3, SelfDetermination). 

• Programs to develop self-advocacy and leadership skills among people with 

developmental disabilities. (See Chapter 3, Self-Determination).

• Projects that create employment opportunities for individuals with disabilities. (See 

Chapter 5, Productivity).

• Family support activities, including those for military families, which rely on 

collaborative efforts and community-based solutions to reach unserved and underserved 

families. (See Chapter 6, Integration and Inclusion).

• Programs designed to enhance the participation of minorities in initiatives in 

developmental disabilities. (See Chapter 6, Integration and Inclusion).

17 
Chapter 2: Supporting the Core Values of the DD Act

“The purpose of this title 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, including specifically 

State Councils on Developmental Disabilities in each State to engage in advocacy, 

capacity building, and systemic change activities ... protection and advocacy systems in 

each State to protect the legal and human rights of individuals with developmental 

disabilities ... [and] University Centers for Excellence in Developmental Disabilities 

Education, Research, and Services ... funding for national initiatives to collect necessary 

data on issues that are directly or indirectly relevant to the lives of individuals with 

developmental disabilities; technical assistance to entities who engage in or intend to 

engage in activities consistent with the purpose described in this subsection or the policy 

described in sub-section (c); and other nationally significant activities....”

— Developmental Disabilities Assistance and Bill of Rights Act of 2000 

The DD Act requires that AIDD and its grantees work to ensure that individuals with 

developmental disabilities and their families receive assistance that promotes the core values of 

self-determination, independence, productivity, and integration and inclusion into all aspects of 

community life. These four values represent a broad definition of what it means to be an 

American, participating fully in life in the United States, and relate directly to the four goals of 

the Americans with Disabilities Act: equality of opportunity, full participation, independent 

living, and economic self-sufficiency for all people with disabilities. 

In FY 2011 and FY 2012, AIDD sought, as it had earlier, to embody these values with great 

success, enabling individuals with developmental disabilities and their families across the United 

States to achieve a better quality of life. The examples that follow in this report offer a glimpse at 

the extensive work being done across the country by AIDD grantees. 

Meeting the Goals of the DD Act

Longitudinal data are the basis for AIDD’s strategic mission and provide quantitative support for 

AIDD’s continued efforts to better the lives of individuals with developmental disabilities. The 

data are collected on a national level and have been funded by Projects of National Significance

more than 20 years. The data are used to identify areas of specific need, and are helping 

lawmakers and other stakeholders make the most educated policy and care decisions for 

individuals with developmental disabilities in the United States.

The comprehensive, population-level data collected from grantee annual reports embody the four 

core areas of the DD Act, and are used to analyze the movement of individuals with 

developmental disabilities from segregated environments to integrated and inclusive ones, as 

18 
well as the state of employment opportunities, and the quality and availability of community 

services. 

These longitudinal data studies are the National Residential Information System Project (RISP), 

State of the States in Developmental Disabilities, and Access to Integrated Employment: 

National Data Collection on Day and Employment Services for Citizens with Developmental 

Disabilities. 

National Residential Information System Project (RISP)

RISP continues more than 20 years of analysis of annual state-by-state and national statistics and 

analysis on residential services for people with developmental disabilities, including state and 

non-state institutional settings and community and home-based residential services. With the 

guidance of an advisory group made up of people with intellectual and developmental disabilities 

and their family members, the research is conducted through the Research and Training Center 

on Residential Services and Community Living Institute on Community Integration, the UCEDD 

at the University of Minnesota. 

A PNS-funded project, RISP examines the associations between personal characteristics, living 

arrangements, financing and support models, state systems and other factors on the achievement 

of inclusion, self-determination, satisfaction and other outcomes. It also conducts research on 

state policy and program outcomes relating to 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 collects 

data from states on the number of children and youth with intellectual and developmental 

disabilities living and receiving supports outside the home of biological or adoptive family 

members. 

These data sets provide information that is not available in other national surveys for analyses of 

demographic, service and policy topics specific to people with intellectual and developmental 

disabilities. 

In FY 2011, 71.5 percent of individuals with intellectual and developmental disabilities receiving 

publicly funded supports lived with family members, and 16 percent lived alone or with a 

roommate. These findings beg the question: How are people with disabilities and families being 

supported in their homes to ensure that the family unit stays intact and what happens to people 

with disabilities as their family caregivers start to age?

Furthermore, an estimated 49 percent lived in congregate settings with three or fewer residents, 

26.6 percent lived in congregate settings with four to six residents, 12.6 percent lived in 

congregate settings with 7 – 15 residents, and 12 percent lived in large public or private facilities, 

nursing homes, or public psychiatric facilities, an increase from 9 percent in 2011. Of individuals 

with intellectual and developmental disabilities who did not live with family members in 2011, 

49 percent lived in settings with one to three people (including homes of their own, host homes, 

and small group settings), and 32 percent lived in settings with 6 or fewer residents. RISP data 

regarding state services varies widely. In FY 2011, 18 states served 90 percent or more of all 

19 
citizens with developmental disabilities who lived in congregate settings with six or fewer 

residents, while four states served more than 90 percent of such people in settings for one to 

three people. On the other hand, three states served less than 50 percent of such people in 

settings for fewer than six people. 

RISP disseminates information based on its findings through a variety of formats, including 

annual reports; the IMPACT, Policy Research Brief, and Community Services Reporters 

newsletters; the QualityMall.org website; and the “Trends and Milestones” feature in the journal 

Intellectual and Developmental Disabilities (formerly Mental Retardation). 

The activities carried out through this project provide timely and accurate information about 

residential services and newly implemented policies in the United States so that policymakers, 

service providers, individuals with developmental disabilities and their families can make 

informed decisions regarding housing and community living. 

State of the States in Developmental Disabilities 

State of the States in Developmental Disabilities is administered by the University of Colorado, 

funded in part by AIDD. Established in 1982 to investigate the determinants of public spending 

for intellectual/developmental disabilities services in the United States, the project maintains a 

longitudinal record of revenue, spending and programmatic trends in the 50 states, the District of 

Columbia, and the United States as a whole for fiscal years 1977–2012. 

The project is a benchmarking study of the states’ performances as they work to implement the 

Supreme Court’s Olmstead v. L.C. decision promoting community living, while seeking to 

recover from the recent, severe budgetary challenges of the recession and its aftermath. By 2011, 

77 percent of all spending for all intellectual and developmental disabilities (I/DD) services came 

from Medicaid. Spending for community services was provided by the Home and Community 

Based Services (HCBS) Waiver in addition to other state and local government funding. In the 

same year, 85 percent of all I/DD spending was dedicated to community services. Five states and 

the District of Columbia committed 100 percent of I/DD funds on community services and 24 

states spent at least 90 percent of their I/DD budget on community services.5 This is a vastly 

different trend than 10 years ago when I/DD funding was dedicated to institutional versus 

community services.6

With the guidance of an advisory group of people with intellectual and developmental 

disabilities and their family members, the project provides substantive quantitative data on 

community services and supports, public and private institutions, fiscal efforts in states, and 

demand for services and supports. The project provides a ‘create a chart’ option on its website 

where the public can also customize a report to suit their needs. 

This project provides a significant amount of information to AIDD, other federal agencies, state 

policymakers and other stakeholders. It enables a thorough understanding of supports and service 

5 State of the States. https://www.cu.edu/ColemanInstitute/stateofthestates/index.html 6 State of the States, 9th Edition

20 

 
systems in the United States, and offers both quantitative and qualitative information about the 

living and working status of individuals with disabilities. 

Access to Integrated Employment: National Data Collection on Day and Employment 

Services for Citizens with Developmental Disabilities

The Access to Integrated Employment: National Data Collection on Day and Employment 

Services for Citizens with Developmental Disabilities studies have been in place since 1988, 

extending research describing day7

 and employment services for individuals with developmental 

disabilities and contributing to an understanding of the factors that influence employment at the 

individual, service provider and state levels. 

Conducted by the Institute for Community Inclusion at the University of Massachusetts Boston, 

the project assesses the effectiveness of state intellectual disability and developmental disabilities 

agencies and vocational rehabilitation agencies in promoting full inclusion of individuals with 

developmental disabilities through employment and other community activities, and the 

employment and economic status of individuals with developmental disabilities on a state and 

national basis. The project also identifies “promising practices” that were used by employment 

specialists to find employment-related services for people with intellectual and developmental

disabilities. 

With the guidance of an advisory group consisting of individuals with intellectual and 

developmental disabilities and their family members, the project describes and promotes 

promising state and local policy and practices that enhance access to integrated employment at 

both the systems and individual customer levels. It demonstrates the use of Geographic 

Information System (GIS) Technology to illustrate patterns of investment in service system 

outcomes, and provides online access to a catalog of best practices in state and local policy and 

practice that promotes access to integrated employment, including outcome data collection tools, 

funding structures, and employment policies and initiatives. 

It also implements http://www.statedata.info, an interactive website that provides fully accessible 

on-demand charts and tables illustrating service system investment in day and employment 

services and employment outcomes. 

7 For this data collection project, “day services” refers to facility-based and community-based non-work services for individuals with intellectual 

and developmental disabilities. Community-based non-work includes services focused on supporting people with disabilities to access 

community activities in settings where most people do not have disabilities. Facility-based non-work includes all services that are located in a 

setting where the majority of participants have a disability. Neither service involves paid employment of the participant.

21 

 
Chapter 3: Self-Determination

Self-determination refers to a characteristic of a person that leads them to make choices and 

decisions based on their own preferences and interests, to monitor and regulate their own actions, 

and to be goal-oriented and self-directed.

Self-determination is at the core of the DD Act. As outlined in Section 102, self-determination 

activities are defined as:

“... activities that result in individuals with developmental disabilities, with appropriate 

assistance, having— 

(A) the ability and opportunity to communicate and make personal decisions; 

(B) the ability and opportunity to communicate choices and exercise control over the type 

and intensity of services, supports, and other assistance the individuals receive; 

(C) the authority to control resources to obtain needed services, supports, and other 

assistance;

(D) opportunities to participate in, and contribute to, their communities; and 

(E) support, including financial support, to advocate for themselves and others, to 

develop leadership skills, through training in self-advocacy, to participate in coalitions, to 

educate policymakers, and to play a role in the development of public policies that affect 

individuals with developmental disabilities.”8

For individuals with developmental disabilities, self-determination is an important factor in their 

ability to pursue their own definition of happiness and to make choices that will enable them to 

achieve their goals and aspirations, and protect their rights as individuals within American 

society. Individuals with developmental disabilities who have the degree of control they desire 

over their lives consistent with their capacities, strengths and needs are more likely to express 

satisfaction in other areas of their lives, like employment. 

By providing supports and services to individuals with developmental disabilities to help them 

determine their own futures, AIDD not only is investing in the futures of individuals 

immediately served, but also in the futures of Americans with disabilities in generations to come. 

Self-Advocacy 

Individuals with developmental disabilities and their families are their own best champions. 

They are self-advocates and advocates for their family members, speaking up about their needs 

and rights, and rightly asserting themselves as vital contributors to the national conversation 

about the services and systems that support them. Across the United States, self-advocates and 

advocates are raising their voices for themselves, their peers and their family members, and often 

times do so in partnership with the DD networks in their states. However, more needs to be done 

8 Public Law 106–402, Section 102(27)

22 

 
to ensure that people with disabilities and their families are empowered to speak up and have the 

necessary confidence, skill-set, and policy knowledge to do so. 

In 2011, 49 DDCs directly or indirectly provided $3.67 million in funding across the states to 

self-advocacy organizations that were led by individuals with developmental disabilities.

The following are a few examples of self-advocacy activities that were undertaken throughout 

the nationwide DD network during FY 2011 and FY 2012: 

Indiana DDC 

Council efforts in youth self-advocacy continued with a technology project called My VOICE, 

which focused on multimedia presentations for student-led Individualized Education Plan (IEP) 

meetings. Three high schools within a school district were involved and 89 students used their 

My VOICE presentation to develop their IEPs. In addition, pre-service teachers at a local 

University participated in the project. As a result, many of those students graduated and became 

employed in other districts, using the My VOICE approach to help others in their communities. 

The Consumer Involvement Fund enabled 289 self-advocate and their families attend 

conferences and trainings that provided valuable information and opportunities related to 

developmental disabilities.

Michigan DDC

The Council funded a statewide self-advocacy network of 38 consumer-driven local advocacy 

coalitions called Regional Interagency Consumer Committees and a statewide project entitled 

Connections for Community Leadership (CCL) which provided training on disability identity, 

leadership development, and various handbooks and curricula. Additionally, they hosted the 

second “Her Power Her Pride Her Voice” event for young high school girls with various 

disabilities. Participants challenged the stereotypes of mainstream media through hands-on 

activities, discussions, reflections, and art creation. 

North Dakota P&A

The ND P&A was involved in number of collaborative activities related to self-advocacy and 

health care. For example, the North Dakota Disability Advocacy Consortium (NDDAC), a 

private, not-for-profit organization made up of approximately 16 members with a common 

interests regarding the rights of, and services for, people with disabilities, worked to provide 

information and education regarding health care to individuals with disabilities, their families, 

services providers, and others who are interested. Members include: ND Center for Persons 

with Disabilities, ND Association of Community Providers, P&A, The Arc of ND, The Arc 

Upper Valley, AARP ND, Experience Works, Family Voices North Dakota, Mental Health 

America of ND, ND Association of the Blind, ND APSE, the Federation of Families for 

Children’s Mental Health, The Arc of Bismarck, American People Self Advocacy Association, 

Western Sunrise, Multiple Sclerosis Society. 

Additionally, the ND Disabilities Health Project is a collaborative project whose mission is to 

promote the health and wellness of ND citizens with disabilities, while working to prevent or 

23 
lessen the effects of secondary conditions associated with disabilities. The objectives of this 

collaborative project between the ND Center for Persons with Disabilities at Minot State 

University, the Center for Rural Health at the University of North Dakota, P&A, and the ND 

State Department of Health-Division of Chronic Disease included working to establish a state 

office in the disability division to collect statewide data, analysis and reporting on the health and 

wellness conditions of ND citizens with disabilities and to promote healthy lifestyles, and to 

improve access to healthcare and wellness programs for people with disabilities will be focused 

on through these efforts. 

Hawaii UCEDD 

Living to Our Full Potential, a multi-dimensional project, is targeted to young people with 

mental health challenges, their families and the community at large. The purpose of the project 

was to: build the capacity of youth to determine and forge their destinies; provide a platform 

these individuals to have their voices heard; and to create venues and strategies whereby 

collaborators, working groups, and teams can continue to be inspired, informed and educated 

about best practices, current research and initiatives, while developing professional skills. 

Initiatives included: 

• Developing community engagement programs which promote mental health awareness, 

prevention and build capacity for self-advocacy through the implementation of a skillsbased program for families and youth to support healthy diets and exercise. 

• Developing youth self-advocacy through storytelling, which can positively support 

overall mental health, increase individual and collective self-esteem and reduce stigma in 

the community. Stories continue to have communal efficacy and have the power to unify 

cultures, influence behaviors and support inclusive environments, diversity and selfdetermination. The workshops provided attention to the personal voice, exercises, 

mastery of voice, face and body and the creation of person narratives, culminating in a 

performance and digital storytelling project which can be used for media promotions. 

• Providing an employment training ground for mental health consumers to support a four 

month job internship program in events management. The unit provided leadership and 

training for mental health consumers in the field of events management, a certificate of 

graduation, and a small stipend for each job trainee graduate. The activity timeline 

involved recruiting and outreach, curriculum development and on-site supervision of a 

mental health event. For the Pacific Rim 2011 conference, the job trainees organized a 

five hour forum for and by people with mental health challenges utilizing a social justice 

framework. 

Minnesota UCEDD

Self-Advocacy Online provided an educational and networking website in development for teens 

and adults with intellectual and related cognitive disabilities, targeted at those who participate in 

organized "self-advocacy" groups and activities in the United States. For the vast majority of 

self-advocates, the internet has largely been an untapped resource for learning and collaborating. 

24 
Self-Advocacy Online served as a tool for translating important issues for persons with 

intellectual and related cognitive disabilities to understandable and entertaining interactive 

lessons and information, while connecting individuals and groups to a larger group of learners. 

Too often, self-advocacy groups work in isolation. Although most groups benefit from support 

from a parent organization, with support staff and office resources (e.g., meeting space, 

computers), they often are not connected to other groups and know little about current issues in 

self-advocacy outside of their geographic area. Accordingly, Self-Advocacy Online provided a 

hub for individuals and groups to collaborate and share ideas, while providing necessary 

computer literacy skills in the process. The Self-Advocacy Online web site at can be accessed 

at: http://www.selfadvocacyonline.org 

Self-Advocacy Summits 

In 2011-2012, AIDD funded self-advocacy summits and leadership gatherings of self-advocates 

and partners to gather information around self-advocacy activities and policies in each of the 56 

U.S. states and territories and seek ideas on what AIDD should do to better support selfadvocacy and encourage it through the DD network partners . Before each summit, state teams 

worked together to develop a PowerPoint overview of accomplishments, strengths, and 

challenges in self-advocacy. During each summit, state teams continued to work together to 

develop a plan for possible next steps that could be taken in their own state to strengthen selfadvocacy. Teams developed recommendations for national activities and policies that could help 

strengthen self-advocacy at the national level, and had informal discussions about the roles, 

functions, and needed supports for growing the self-advocacy movement. Overall, the purpose of 

the summits was to strengthen and enhance self-advocacy efforts in the states and nationally. 

During 2011, summits were held in Kansas City, MO; Providence, RI; Columbus, OH; Los 

Angeles, CA; and Atlanta, GA. In 2012, they were held in Baltimore, MD; Honolulu, HI; 

Chicago, IL; and Seattle, WA. AIDD is using this information to enhance our self-advocacy 

efforts in FY 2013 and beyond. 

25 
Chapter 4: Independence

At its core, independence for individuals with developmental disabilities is about the ability to 

determine one’s own future and access the appropriate supports necessary to make those plans a 

reality. Because this may not be possible for all individuals, independence becomes about living 

interdependent lives with the supports one needs and finding the most self-sufficient ways to 

participate in daily life in the United States. 

AIDD’s grantees support and foster independence for individuals with developmental disabilities 

through efforts to improve community living and housing, education and financial independence 

initiatives, and emergency preparedness planning. 

Native American P&A

The Native American Disability Law Center (NADLC) received a grant to address the housing 

needs of persons with developmental disabilities living on the Navajo and Hopi reservations. 

NADLC is based in New Mexico, but has an effective and ongoing relationship with both tribes 

as well as the Navajo Housing Authority (NHA). The grant served two purposes: 1) to improve 

the NHA's policies, procedures and application process to make their housing programs and 

services easier to access by persons with a developmental disability; and 2) to educate persons 

with developmental disabilities and their families about northern Arizona's affordable and 

accessible housing options, and the services and supports available to help people live 

independently in their own communities. At the end of the contract period, two focus groups 

were held with Navajo members to discuss barriers to affordable housing on the reservation and 

ways the NHA policies and procedures could be improved upon. Work continues with the NHA 

to review current policies in place and ways to improve upon them. Legal assistance was 

provided by a team from the NADLC who are experts in this field, as well as able to effectively 

partner and communicate with the NHA. Two thousand housing guide manuals were created for 

distribution to a larger network of partners in northern Arizona as a resource guide to find 

affordable housing, and were distributed to service providers, NHA offices and other community 

partners on the Navajo and Hopi reservations. 

District of Columbia P&A 

University Legal Services for the District of Columbia (ULS) participated in a workgroup 

organized by SchoolTalk to discuss and create a plan for improving alternative dispute resolution 

options in special education disputes in the District. Participants learned about national best 

practices in alternative dispute resolution and broke into small groups to discuss how DC would 

improve its alternative dispute resolution options. 

ULS gave many presentations on the rights of students with disabilities. For example, ULS 

presented to 27 Americorp teachers and classroom aides about the special education process and 

identifying students with special needs and presented to individuals with disabilities and their 

family members at DC Advocacy Partners about the rights of students and families in special 

education. 

26 
ULS submitted comments to the Office of the State Superintendent of Education (OSSE) 

regarding the proposed rules for the early intervention system for infants and toddlers with 

disabilities, encouraging OSSE to expand eligibility to more infants and toddlers, and allow 

individualized family service plans (IFSPs) to continue until a child starts kindergarten, as 

opposed to when they a child turns three years old. 

New York DDC

During FY 2011, the New York DDPC worked to improve educational opportunities for 

individuals with developmental disabilities through: 

• An outreach campaign was undertaken to reach Spanish-speaking families and childcare 

providers with the assistance of CDC. In 2011, “Learn the Signs” materials were 

distributed to approximately 11,400 staff and over 2,500 families. 

• DDPC worked with the NYS Afterschool Network (NYSAN) to develop and implement 

a statewide webinar on inclusion. The webinar was designed to provide information to 

afterschool administrators, providers, and frontline staff about making existing 

afterschool programs more inclusive to youth with disabilities. Informational material 

from the webinar was distributed to over 1200 afterschool, recreation, and fitness 

providers nationally via the National Center on Physical Activity and Disability and the 

NYSAN communications network. 

• The Special Ed Taskforce (SET) Meetings & Inclusion Conference, comprised of more 

than 250 SET members and the participation of more than 500 individuals, promoted 

advocacy, mentoring, training & collaboration in upstate NY. Training topics in 2011 

included: Changes to Special Education Regulations, Mandate Relief, Assistive 

Technology in Reading & Math, Bulling and Harassment, McKinney-Vento, and 

Strengthen the Role of the Parent Member.

• DDPC worked with Think College NY to build capacity in post-secondary institutions to 

effectively include and serve students with developmental disabilities using a community 

of practice/learning approach.

Florida DDC and P&A 

Through workshops and the development and dissemination of1500 DVDs on special education 

law & advocacy, the Council collaborated with Disability Rights Florida to provide information 

to families, school personnel and self-advocates with the purpose of assisting them in advocating 

for improved educational benefits for children with disabilities in schools throughout Florida. 

Through the Universal Education Project, the Council trained 29 district staff in three school 

districts to facilitate programs to be more inclusive. They, in turn, implemented training for 375 

people to implement inclusive programs for children in their schools. This activity was 

undertaken by using the Best Practices in Inclusive Education Assessment (BPIE) tool and 

developing action plans from the results of the assessment. All three school districts made great 

strides in changing attitudes & setting up placements for children with significant disabilities for 

27 
the next school year. Project Discover worked in the area of transition for students from third 

grade through post-school outcomes. Project Discover expanded its reach into a neighboring 

county in order to improve the transition programs for students with significant disabilities in ten

schools. This project assisted 12 students to gain paid & unpaid jobs in the community. More 

than 60 students developed visual resumes & employment portfolios to eventually lead to work 

experiences. 

Virginia UCEDD

The purpose of this initiative was to increase opportunities for older persons and individuals with 

disabilities to use self-direction in order to provide greater choice and control in identifying, 

accessing, and managing the long-term services and supports they need to live successfully in 

their communities. Through enhanced self-direction strategies, the VA Partnership for People 

with Disabilities worked to increase individuals’ abilities to discuss, communicate, and direct 

their choices and gain access to information about the availability and use of supports and 

services, including creative and inclusive options for employment, housing, transportation, health 

care, and other supports that maximize life in the community. 

Connecticut DDC

The Council funded an on-demand transportation study in the Danbury Transportation District. 

The survey, in English and Spanish, was distributed to 300 residents and completed by 224 

residents with developmental disabilities in Greater Danbury to determine the demand for a 

transportation service enabling people to attend meetings and events or work opportunities. The 

survey focused on mobility needs, type of transportation used, and reasons that certain types of 

transportation were not used. The survey also addressed likes and dislikes of transportation 

services, how much a person could or would be able to pay, days and times when transportation 

is needed, and destinations that are challenging to access through existing transportation services. 

The survey indicated that the two most significant negative aspects of transportation options 

were wait times and the need to schedule trips in advance. The study recommended 

enhancement of existing taxi services. Connecticut has implemented accessible taxis in New 

Haven. 

Kansas UCEDD 

The Assistive Technology for Kansans project (ATK), coordinated by the University of Kansas 

at Parsons, and its non-profit partner, Kansas Assistive Technology Cooperative (KATCO) 

operated a telework financial loan program for the purchase of assistive technology devices and 

services necessary for employment by distance. The Kansas Telework Program, directed by 

persons with disabilities, provided the financial guarantee necessary for personal financing of 

devices such as computer hardware and software, adapted peripherals, hearing and vision aids, 

and other devices necessary for work. The establishment of a telework program provided a 

financial mechanism to develop employment opportunities and to support persons with 

disabilities in purchasing assistive technology devices and services needed to work from a 

remote site or at a telework center. 

28 
Program activities focused on developing financial loan services and supports that make working 

by distance an employment option for Kansans who have disabilities. Dissemination and 

outreach efforts for the telework program included public service announcements, media 

campaigns, informational booths at state and regional meetings, direct mailings, articles in 

newsletters, and presentations made to disability and non-disability groups. Information gained 

from operating the telework pilot programs was made available through these efforts. Employers, 

potential employers, assistive technology providers, and durable medical equipment vendors 

were involved in media outreach efforts and included in public awareness efforts. 

Data regarding applicant characteristics, device selection, impact of access to technology, and 

employment outcomes will be collected and shared with the national database. Information and 

outcomes will be shared with policymakers. 

Colorado P&A 

The Colorado P&A conducted 12 investigations of the use of restraint in schools and provided 

half-day training to school staff in a rural school district. For example: A seven-year-old student 

diagnosed with cytomegalovirus (“CMV”) came home from school one day with red abrasions 

on his neck, indicating that he had been strangulated. The Legal Center determined that the 

injury was caused by the mechanical device, a butterfly harness, which was used to help support 

him in his wheelchair. After The Legal Center conducted its investigation into what caused the 

injury, The Legal Center recommended that the school district train its staff on follow up 

procedures that would prevent this sort of injury from happening in the future. Specifically, it 

was recommended that the procedure include a secondary check on mechanical devices that have 

the potential to cause injury when in use. In this case, it appeared that the butterfly harness had 

slipped up to the student's neck while he was riding home on the bus, and because his bib 

covered the harness all the way up to his neck, neither the bus staff nor the school staff were 

able to see that the harness was causing the neck injury.

The Legal Center received allegations that a fifth grade student with autism was being repeatedly 

placed in a “quiet room” in two elementary schools, Jackson and Meridian Elementary. Because 

it was alleged that the student was often placed in the “quiet rooms” with the door shut for nonemergency reasons, The Legal Center contacted the school district’s attorney to discuss the 

allegations. The school district’s attorney agreed to conduct restraint training, along with The 

Legal Center, for the special education staff and school administrators. The training focused 

mainly on seclusion and what seclusion restraint looks like under the Department of Education’s 

Rules for the Administration of the Protection of Persons from Restraint Act (“Restraint Rules”). 

The training, consisting of a PowerPoint presentation, included detailed images of what it looked 

like when a student was placed in seclusion. This was extremely helpful for staff, since many 

members were not aware that leaving a student alone in a room and preventing egress from the 

room would be considered seclusion. In addition, the definition of emergency was explained in 

detail so that students would no longer be placed in seclusion unless there was an actual 

emergency, as defined by the Restraint Rules. The training impacted about 40 people, all of 

whom indicated that they would be better prepared to follow the Restraint Rules in the future.

29 
North Carolina P&A 

In October 2011, Disability Rights NC received a complaint about the use of restraint in a local 

county school system – specifically, that an elementary school student with autism was belted 

into a chair for the majority of the day. After a brief investigation, the Team Attorney 

determined that the student was restrained, the use of restraint was not included in the student’s 

IEP, and its use was not documented appropriately. The Attorney identified nine other students 

who were similarly restrained. Based on that information, Disability Rights NC filed a 

complaint with the U.S. Department of Education, Office for Civil Rights in March 2012. In 

August, OCR issued its findings letter in the case. OCR identified 18 students, including the 

original complaining students, who were subjected to mechanical restraint. The use of restraint 

was not included in the students’ Pies, had not been discussed with their parents, and in many 

cases had not even been reported to the parents, all in violation of Section 504 of the 

Rehabilitation Act. The school system entered into a settlement agreement with OCR. The 

agreement requires the system to provide training for staff, and to convene IEP meetings for all 

18 students to determine (a) whether the use of mechanical restraint is necessary for the student 

and, if so, to put specific information about its use in the student’s IEP, and (b) whether the 

student is due compensatory education services for the use of mechanical restraint during the last 

two schools years. Disability Rights NC is keeping the investigation open until OCR confirms 

that it has approved the implementation of the settlement agreement and that their investigation 

is closed.

30 
Chapter 5: Productivity

The DD Act defines productivity as the engagement in income-producing work that is measured 

by increased income, improved employment status, or job advancement or engagement in work 

that contributes to a household or community. 

To that end, AIDD’s grantees worked in FY 2011 and FY 2012 to increase productivity through 

programs that encourage gainful, competitive, integrated employment and the development of 

job skills. Productivity was also supported through strides made in securing access to technology 

that enables individuals to participate equally in activities.

Assistive technology can improve the functional capabilities of individuals with disabilities. 

These devices, pieces of equipment and other products enable individuals with disabilities to 

adapt to environments and circumstances, making them productive members of society. 

Seventeen UCEDDs and two P&As are the state-wide assistive technology providers. 

The use of assistive technology creates a necessary bridge for individuals with disabilities to 

participate in an activity that they would have been excluded from previously. Through the selfadvocacy of those individuals and many others around the country, school systems, employers, 

landlords and other public bodies are being held accountable to provide reasonable 

accommodations for individuals with disabilities.

Employment is a critical component of community living for most adults, including people with 

intellectual and developmental disabilities. Work is not only the means to economic selfsufficiency, it is also an important way for individuals to contribute to their communities, build a 

network of social relationships and create opportunities for lifelong learning. 

However, obtaining competitive employment in an integrated setting can be difficult. DD 

networks across the United States have been working to ensure that all individuals with 

developmental disabilities have access to the employment opportunities that they desire and that 

allow them to be contributing members of their communities.

Education is one of the key determinants in employment success for students with intellectual 

and developmental disabilities. Even with a diploma, however, youth with intellectual disabilities 

demonstrate the lowest rate of paid employment among students with disabilities (29.8 percent), 

one to four years after exiting high school. Despite these statistics, individuals with intellectual 

disabilities can, and do, succeed in employment.

Arizona DDC

The Sonoran UCEDD at the University of Arizona was funded a one year contract to expand 

Project SEARCH to Maricopa County. Identifying a host business has been time consuming and 

is often a 12-18 month process according to Project SEARCH data gleaned from other programs 

across the country. This is due to identifying host employers, coordinating educational support 

and negotiating agreements that lead to outcomes of competitive employment. First year funding 

for this project has concentrated upon identifying and securing a business site, establishing and 

31 
holding ongoing meetings with an advisory board, developing necessary informal and formal 

contractual agreements, and obtaining necessary support and training from Project SEARCH 

national consultants. As an adjunct to developing competitive employment opportunities, the 

Council has also paid the membership fee for the state DD agency to participate in the State 

Employment Leadership Network (SELN). This initiative will allow the state DD agency to 

benefit from the services offered and coordinated by SELN and other state DD agencies in 

updating identified employment needs, developing a strategic plan for increasing statewide 

competitive employment for persons with DD and partnering with the Council and other key 

organizations in rolling out a structured plan. The state DD agency is in the initial stages of 

assessment and will be developing the strategic plan over the next year.

Tennessee DDC Network

One example of a successful collaboration is the Tennessee Collaborative on Meaningful Work. 

Collaborators include the UT Boling Center UCEDD; the Vanderbilt Kennedy Center UCEDD; 

Tennessee’s Council on Developmental Disabilities; Disability Law & Advocacy Center of 

Tennessee (DLAC); The Arc Tennessee; and the Tennessee Departments of Labor and 

Workforce Development, Education, Children’s Services, Human Services/Division of 

Rehabilitation Services, and Intellectual and Developmental Disabilities. The goals of this 

collaboration are to stimulate and advance systems/policy change statewide; raise the aspirations 

and capacities of people with intellectual disabilities/developmental disabilities (ID/DD), their 

families, service systems, employers and communities regarding competitive work as the first 

choice; and increase access to meaningful work while individuals with ID/DD are still in high 

school and to multiple pathways to future careers after school. This is a statewide effort which 

includes rural communities and students of all racial/ethnic backgrounds. The DD Community 

also assisted the Department of Labor and Workforce Development in implementing strategies to 

increase employment opportunities for persons with disabilities utilizing funding from a $2.9 

million dollar federal grant.

Disability Law & Advocacy Center of Tennessee (DLAC) has spearheaded the formation of the 

Tennessee Transition Coalition. This coalition meets to determine implementation strategies to 

address transition issues across Tennessee. DLAC also collaborated with the Division of Special 

Education Services to promote appropriate procedures for transition from school. 

Tennessee P&A

The Disability Law & Advocacy Center of Tennessee’s (DLAC) worked to ensure that 

individuals served by the Tennessee Department of Intellectual and Developmental Disabilities 

(DIDD) have the opportunity for integrated and competitive employment. As a first step, DLAC 

worked with DIDD on a data collection process regarding clients who are employed outside of 

sheltered workshops in order to determine whether those individuals are in integrated and 

competitive employment or segregated employment. In addition, DLAC advocated for 

competitive and integrated employment as the first choice employment objective for DIDD 

clients. 

32 
Massachusetts UCEDD

 

This project provided training for staff in public vocational rehabilitation, community 

rehabilitation programs and related organizations to increase knowledge and skills acquisition in 

job development/marketing professionals for the purpose of improving employment outcomes 

for persons with disabilities. Major activities included:

• establishing an in-service and pre-service training curriculum in job 

development/marketing; 

• offering a series of flexible and diverse training programs for students, including didactic 

training, distance learning, mentorship experiences and field based work in the area of 

job development/ marketing for persons with disabilities; 

• developing a message board for job placement professionals and community agencies 

employing such professionals addressing the core staff competencies; and

• evaluating the impact of the training by assessing the graduates and their supervisors on 

changes in skill levels, overall satisfaction with the program, and outcomes achieved.

Colorado UCEDD

 

This two-year project worked to develop and evaluate the use of distance technology to deliver 

intervention to families of children with Autism Spectrum Disorders and anxiety who are 

geographically removed from specialty centers. Videoconferencing sessions, online learning 

modules, and phone calls were used to provide long distance trainings. 

33 
Chapter 6: Integration and Inclusion

In the DD Act, Congress finds that “disability is a natural part of the human experience that does 

not diminish the right of individuals with developmental disabilities to live independently, to 

exert control and choice over their own lives, and to fully participate in and contribute to their 

communities through full integration and inclusion in the economic, political, social, cultural, 

and educational mainstream of United States society ...”9

For individuals with developmental disabilities, integration into all aspects of society is often 

achieved through access to community supports, services and technology that are coordinated to 

benefit each person’s unique strengths, resources, priorities, concerns and capabilities. 

Throughout the 2011 and 2012 fiscal years, AIDD and its grantees have worked to ensure that 

individuals with developmental and intellectual disabilities are receiving the appropriate support 

and services.

Quality Assurance and Community Supports

Community supports are among the essential elements that enable individuals with 

developmental disabilities to become fully integrated and included in their communities. These 

supports can be threatened by tightening budgets and economic downturn. DD networks around 

the country have engaged in programming that works to ensure that accessible and flexible 

quality supports and services are available to individuals with developmental disabilities and 

their families. 

Through these efforts, people with disabilities are helped both in the short term and in the long 

term as ineffective systems are either changed or discarded, meaningfully altering the way 

individuals with disabilities are supported in the future. 

Tennessee DDC

The Tennessee DDC invested in a systems change project known as Person-Centered Thinking 

Organizations. The effort was designed to provide training, mentoring, technical assistance, & 

support to agencies wishing to change their business culture by adopting a person-centered

philosophy and the use of person-centered tools, based on the premise that skills change behavior 

and behavior changes values. The goal of the project was to support the implementation of 

person-centered practices across the state by providing training, developing a community of 

practice, and providing ongoing support to the organizations implementing the practices. 

Additionally, TN has 13 credentialed People Planning Together (PPT) trainers who serve as selfadvocates and teach this two-day class to people who receive services from the Department of 

Intellectual and Developmental Disabilities (DIDD). Other Person-Centered accomplishments 

included: setting up a policy review committee at central office in order to ensure newly 

developed policies and procedures are not contrary to a person-centered system; forming a 

9 Public Law 106–402, Section 101

34 

 
leadership team, holding support meetings for coaches, and bringing together parents and 

caregivers from culturally and linguistically diverse backgrounds that have children with special 

needs. 

New Jersey P&A 

Disability Rights New Jersey contracted with an organization of self-advocates to reach out to 

residents of New Jersey's developmental centers regarding community living options. The 

Seeking Ways Out Together (SWOT) team consisted of former residents of developmental 

centers who schedule events on the campuses of the developmental centers to meet with current 

residents to discuss and respond to questions regarding community living. During visits to the 

institutions, SWOT team members discussed community living through graphics and video and 

shared their personal stories of transitioning from an institutional to community setting. The team 

addressed topics such as assistive technology, bullying, and employment options in the 

community. The team began monthly Circle of Peer Support (CPS) meetings. A CPS is designed 

for individuals interested in talking about personal feelings with peers who have "been there, 

done that" as it relates to living in and transitioning from institutional settings to the community. 

Through community living meetings, the residents participated in interactive discussions through 

videos, games, and testimonials by former developmental center residents who have moved to 

the community successfully. 

Alabama DDC 

The Medicaid Waiver Road Show project presented information to families, self-advocates, and 

professionals about Medicaid waivers. Participants received information for each of Alabama’s 

six Home and Community-Based Waiver (HCBW) programs regarding eligibility, services 

offered, the application process, and appeal rights if deemed ineligible. The AL Coalition 

Against Domestic Violence project provided prevention/educational trainings and workshops 

specifically geared to people with DD on healthy relationships, domestic violence, and sexual 

assaults. The trainings focused on students aged 16-21 who were preparing to move from 

secondary education to the community or college. The Sharing the Care (STC) project had 

volunteer community workgroups addressing respite problems in four south Alabama 

communities. STC utilized community volunteers to create resources uniquely needed by their 

caregiver population, and have found ways to offer a variety of volunteer, faith-based, and peer 

to peer respite as well as access financial resources that may already exist for the residents in a 

target community. In each of the four communities, an STC workgroup was formed and 

strategic plans were developed around four major outcomes. Each community will use the 

strategic plan to carry out activities that will increase their volunteer base. During FY 2011, 

more than 2,200 people were been trained in respite options. An unexpected outcome of the 

trainings was that a fifth site in the STC project was added in Tuscaloosa, with a focus on faithbased options for respite services. 

Florida UCEDD

With a focus on in-service training and technical assistance, this project involved comprehensive, 

community-based training for educators, family members, and other support providers, as well as

35 
brief workshops to promote awareness and expand knowledge in positive behavior support. In 

addition, project staff provided individualized technical assistance to school district personnel 

through on-site coaching and phone consultation. 

Positive behavioral support (PBS) involves the assessment and reengineering of environments so 

people with problem behaviors increase social, personal, and professional quality in their lives. 

PBS is the application of behavior analysis and systems change perspectives within the context 

of person-centered values to the intensely social problems created by behaviors such as selfinjury, aggression, property destruction, defiance, and disruption. It is an approach that blends 

values about the rights of people with disabilities with a practical science about how learning and 

behavior change occur. The overriding goal of PBS is to enhance quality of life for individuals 

and their support providers in home, school, and community settings. 

Family Support Initiatives

Family Support Initiatives provide an opportunity for AIDD to support projects that rely on 

collaborative efforts and community-based solutions to reach unserved and underserved families, 

and to encourage systemic change and improved community capacity to support families of 

individuals with developmental disabilities. In 2012, the Family Support Initiatives were no 

longer in operation due to a lack of federal funding. 

Family Support 360 for Military Families 

The purpose of these projects was to implement one-stop centers for military families. While 

many service programs are available in this country, human service systems often fail to meet the 

diverse needs of an individual with developmental disabilities and his or her family. A family 

may need several services, and many human service systems address primarily one need, such as 

health, education, or employment. These systems usually focus on one individual, not the person 

and his or her family. The AIDD projects worked with military families to assist them with 

navigating both systems – civilian and military. Collectively, these projects provided a total of 

250 comprehensive supports in the form of the development of Individual Family Plans (IFP’s) 

and 447 casual supports in the form of information and referrals (I&Rs). Below are examples of 

Family Support 360 for Military Family project activities. 

New Jersey

This project staff participated in several events, including Specialized Training of Military 

Families (STOMP) training and The Exceptional Family Member Programs (EFMP) holiday 

gatherings. In addition, the project staff conducted six-week resource training series for parents, 

offered a one-day Autism workshop, participated in a coat drive on base, and coordinated a 

parent-led support group. Navigators planned and executed their first parent training, Back to 

School Bootcamp, which addressed common challenges experienced by families. Staff also 

worked with EFMP to host two training sessions with Kathie Snow (Disability is Natural). 

Response to the events was exceptional. A core group of ten family leaders participated in a 

comprehensive 30-hour resource training for parents, where they were provided with the 

36 
information, skills, tools and knowledge to not only advocate on behalf of their own children, but 

also to support and educate other families. The grantee entity and project co-coordinated a 

bilingual information clinic that provided information on the IEP process, parent rights, and IEP 

enhancement. A “Reaching for the Stars” awards ceremony was held for program participants 

who reached personal goals that included securing a GED or employment, improving school 

attendance, and improving family relationships.

This project experienced great success as a result of its partnership with Med Group. The FS 360 

supported their efforts to engage the community and helped coordinate a forum and fair that 

boasted more than 100 participants, including base leadership. There were vendors from both on 

and off base. The USO provided supper and Med Group volunteers manned a child-friendly 

space.

Washington Partnerships for Action Voices for Empowerment 

This project participated in and offered a variety of activities. Staff worked with EFMP to 

provide the first EFMP Family Resource Fair, connecting families with resources on and off 

base. They also participated in the Military and Military Kids and Families Summit, a regionwide meeting that opens communication between the community and the military. The Summit 

included a deployment briefing wherein children participated in an actual deployment line and 

received information from vendors that would normally interact with families during the various 

stages of deployment. Quarterly family get-togethers evolved into monthly networking groups 

with specific themes provided by families.

Georgia 

This project developed and piloted the Kids in Crisis program, which was designed to ensure that 

students are not unfairly removed from education placements to more restrictive settings for 

behaviors that may be results of their disabilities. The project also developed two new roles, 

Local Guides and P2P Brokers, to enhance supports. Local Guides provided parents with insight 

into living in a community with a disability. P2P Brokers were parent leaders who worked FS 

360 staff to host events, attend resource fairs, and update the resource database. Statewide 

support (159 counties) was achieved. 

Navigator teams participated in a range of community events that ranged from parent training, to 

sporting activities (Buddy Ball baseball), to social events (e.g., parents night out). The popular 

teen dance became an annual event, more community partners joined the garden project, and 

community socials became quarterly events. In addition, they coordinated a strategic planning 

retreat for its volunteer board of directors, a group largely comprised of parents of individuals 

with developmental disabilities. 

Mississippi

This project offered summer tutoring to help students best prepare for the new school year. 

Attendees were also linked with local mental health programs, vocational rehabilitation, and 

37 
post-secondary programs for resources and services. Staff conducted a parent meeting to discuss 

needs and perceived barriers to accessing services. Issues of importance raised by parents 

included IEP support, social skills training for children, understanding diagnoses, advocating for 

children, identification of community programs, and peer support. 

Staff coordinated a variety of recreational opportunities that ranged from parent nights out, to 

holiday socials, to a day at the zoo. In addition, the project hosted a number of support group 

meetings and parent classes. Staff also provided speakers for other organizations’ trainings and 

support groups. In addition, staff observed that advisory council members, who met regularly, 

developed a sense of project ownership through their involvement in program discussions, 

decisions, and referrals. Council members also approved a project proposal to select 

“Navigators” within their organizations to help FS 360 families navigate the agencies’ respective 

service systems.

Family Support Community Access and Demonstration Projects

The purpose of these grants was to reach unserved and underserved families, and to encourage 

systemic change and improved community capacity to support families of individuals with 

disabilities via collaborative efforts and community-based solutions. Collectively, these projects 

provided a total of 146 comprehensive supports in the form of the development of Individual 

Family Plans (IFP’s) and 405 casual supports in the form of information and referrals (I&Rs). 

Below are examples of two of these project activities. 

PACE Center, MN

This project piloted the family-centered intake and planning process with three families from 

diverse communities (African-American, Hmong, and Somali). Families provided valuable 

feedback that helped refine services in the second project year. During the needs assessment 

stage of working with families, project staff discovered that roughly one third of families 

included more than one individual with developmental disabilities. This was an important note 

for reporting and outcome evaluation. Families participating in comprehensive assistance were 

asked to create family stories documenting their strengths. Twelve families completed this goal. 

Families were trained on the power of a personal story and how they can utilize stories for 

systems change. Through the project, 30 families in need received computers. Advocates helped 

families to set up and use their new equipment. In addition, they offered workshops on parent 

communication, advocating for children (in Spanish), post-secondary transition (in English, 

Spanish, and Somali), and special education (Hmong and Somali interpreters provided).

Georgia 

This project developed and launched its time bank. One Real Community awarded nine minigrants that funded a variety of activities, from a community art project to the development of a 

sensory garden at a local high school. Another Real Community held monthly community 

dinners and developed a Roving Listeners summer youth project that involves monthly youth 

groups. They also partnered with the State Department of Community Health to offer two Asset 

38 
Based Community Development trainings in Atlanta. The project also convened Community 

Builder retreats and Advisory Committee retreats. In addition, each Real Community hosted its 

own events. 

Partnerships in Employment Systems Change Projects 

Partnerships in Employment System Change Projects are a new five-year systems change 

initiative which began in FY2012 to increase employment and post-secondary outcomes for 

youth and young adults with intellectual and developmental disabilities. Each project is led by a 

consortium, including youth and young adults with intellectual disabilities, family members, 

state agency leaders, university centers, advocates, teachers, service providers, and employers. 

Projects have defined an operating plan for improving employment and education through new 

or revised policy development. The project funds a technical assistance provider to assist 

grantees with solving difficult state level policy issues as well as an independent evaluator to 

help determine the effectiveness and outcomes of the project. Below are Partnerships in 

Employment Systems Change project activities. 

Wisconsin

This project held various events to include a Youth Leadership Day. This was a youth track for 

students participating in the pilots. The students learned about legislative advocacy and met with 

their legislators at the State Capitol to discuss employment issues. They also conducted meetings 

with state Senators Luther Olsen, chair of the Senate Education Committee) and continued to 

discuss potential legislative changes that would promote College Workforce Readiness for 

students with disabilities. Proposed changes included: 1) requiring a discussion about VR and 

other agencies providing services to individuals with disabilities no later than 14; 2) adding 

community-based work assessments to age-appropriate transition assessments; 3) 

recommendations for strategy related to academic and school-based preparatory experiences, 

work and career readiness, youth development and leadership, comprehensive community 

connections and family involvement and engagement; 4) providing child with a summary of 

his/her academic achievement and functional performance including post-secondary goals and 

his/her work experiences; and 5) coordinating Individual Learning Plans developed for all 

students with IEP transition plan for students with disabilities. 

Peer to peer mentoring was added to the Children’s Waiver with a focus on employment skills 

support. The school pilots made use of the On the Job Initiative offered by the Division of 

Vocational Rehabilitation for paid summer employment for the pilot students. The OJT provided 

an opportunity for all VR consumers in transition to work for wages before exiting high school 

providing a longer timeframe (up to 500 hours) and a higher wage subsidy (up to 100 percent

reimbursement) to allow an employer to offer competitive employment. Community 

Conversations were held. Outcomes of these meetings included: 1) employees suggesting 

making an inventory of candidates that they could look at on a website; 2) employers and 

community members also wanted to hear more directly from the youth; and 3) suggestion that 

more youth should be out in the community and visible so that the greater community can see 

that they are willing and able to work.

39 
New York

The grantee worked to develop a People First Waiver that significantly affects the state’s DD 

agency funding and delivery of services, including employment. New York’s governor included 

the NYS Olmstead Plan in his State of the State. The plan included goals for achieving integrated 

employment strategies to achieve those goals, performance measures related to transition from 

segregated to integrated employment settings, and baseline/follow-up data on employment of 

people with disabilities.

Access-VR ended its supported employment contracts with provider agencies one year earlier 

than anticipated to align supported employment contracts with contracts for other services (all 

services to follow the five-year funding cycle). The new contract has allowed provider agencies 

to request funding to support targeted job supports activities while students are still in high 

school and allows greater flexibility within NYS for agencies, in partnership with school, to 

promote intensive transition-to-work models. 

OSE and OPWDD worked together to develop a Job Readiness Curriculum that is being used 

across systems. The overall goals were to provide teachers with more effective tools to teach 

job readiness skills during the high school years and 2) to enhance post-school training offered 

by OPWDD and ACCESS-VR. 

Emergency Preparedness

The purpose of these projects was to design a system whereby individuals with developmental 

disabilities and their families can be served and assisted during emergency situations. The 

grantees pool resources, coordinated services and shared expenses in order to effectively train 

individuals with developmental disabilities and family members to prepare for emergencies, and 

trained individuals with developmental disabilities and their families on how to prepared for 

emergency situations and how to return to their regular routine in a timely manner Below are 

specific examples of the activities of Emergency Preparedness projects which are slated to end at 

the end of FY2012.

Delaware 

This project developed a “tool-kit” consisting of a personal emergency readiness planner for 

individuals with developmental disabilities and their families and an accompanying “navigator’s 

guide.” The toolkit included prompts to help individuals with various disabilities prepare a plan 

that addressed their own unique needs during an evacuation or when sheltering in place. 

Navigators were trained to use this toolkit to assist individuals with disabilities in the preparation 

of a customized emergency readiness plan.

Hawaii 

This project identified and adapted Feeling Safe Being Safe (FSBS) curriculum to best meet the 

40 
needs of the target population. Twenty self-advocates have participated in the FSBS train the 

trainer training, professional development and organizational skills training and completed all the 

steps to becoming ‘Certified Host Trainers for the Hawaii Feeling Safe Being Safe Training’. 

Minnesota 

This project trained more than 120 people with severe intellectual and developmental disabilities,

including people who have autism spectrum disorder. The trainings included personal safety 

planning, H1N1 tips for parents and self-advocates, and extreme weather tips. The project also 

trained more than 100 first responders on how to serve people with autism in emergencies.

New Jersey

This project distributed 90 wrist bands to people with disabilities who may have difficulty 

communicating. The wrist band contained a USB drive with Self-Directed Emergency 

Preparedness Plans (S-DEPP) with vital personal and family information. The information was 

then loaded into a USB drive connected to a wrist band a person would be able to wear in case of 

an emergency. The idea was for the individual, who may have difficulty speaking or 

remembering important personal information, to give an emergency shelter worker the USB 

drive so they can retrieve the necessary information. 

North Carolina 

This project hosted a secure website through the University of North Carolina which enabled 

people with disabilities and their families to create PREP plans. The completed website included 

the template for creating an individual or family PREP Plan, as well as information about the 

PREP. 

41 
Chapter 7: Training and Technical Assistance

AIDD awards a number of training and technical assistance projects to help meet and advance 

AIDD’s mission as mandated by the DD Act. Training and technical assistance is used for 

multiple purposes: 

• Building capacity using a variety of strategies, such as training, for greater productivity 

and service; 

• Assisting a grantees by tackling problems that crosses state lines; 

• Assisting individual grantees to carry out its work in a manner that is both responsive to 

the needs of its clients and efficient in its use of taxpayer dollars; 

• Facilitating cross-grantee collaboration to enhance DD Network efforts; and

• Assisting with streamlining administrative processes, collecting information, 

implementing technology advances and providing expert advice in a wide range of areas.

Technical assistance provides AIDD and its grantees a greater ability to meet ongoing needs and 

sustain progress toward more successful, fulfilling lives for individuals with developmental 

disabilities.

In the past two fiscal years, AIDD provided training and technical assistance to each of its 

grantee programs through contracts with a number of organizations: 

• UCEDD Resource Center, implemented under contract by the Association of University 

Centers on Disabilities (AUCD), which provides technical assistance to UCEDDs; 

• Training and Advocacy Support Center (TASC), implemented under contract by the 

National Disability Rights Network (NDRN), which provides technical assistance to state 

P&As; 

• Information and Technical Assistance Center for Councils (iTACC) awarded to the 

National Association of Councils on Developmental Disabilities (NACDD), which 

provides technical assistance to state DDCs; 

• BETAH Associates, which provides technical assistance to the PNS family support 

grantees; 

• Institute for Community Inclusion (ICI) which in under contract to provide technical 

assistance for Project of National Significance Partnerships in Employment Systems 

Change (PIE) grantees.

Technical Assistance for UCEDDs - Association of University Centers on Disabilities 

(AUCD) 

For more than 20 years, AUCD has served as the AIDD technical assistance contractor for the 

national network of UCEDDs. AUCD supports its members in research, education and service 

activities by disseminating information; providing training, research, expert advice and guidance; 

facilitating electronic information sharing; and serving as a resource for federal and state 

42 
policymakers. AUCD also undertakes other activities that promote the viability and use of 

UCEDD resources and expertise nationally and internationally. 

In FY 2011 and FY 2012, AUCD hosted AIDD’s annual technical assistance institutes for 

UCEDD directors which addressed the following topics: 

• Updates from various federal agencies, including the Department of Justice, the 

Department of Education, and , the Centers for Medicare & Medicaid Services; 

• Issues related to health-care reform and the Affordable Care Act; 

• Early childhood; 

• Employment; 

• Seclusion and restraint; 

• Olmstead. 

These institutes were attended by nearly all UCEDD directors who give high ratings on the 

quality of the events. 

 Additionally, AUCD carried out the following activities during FY 2011 and FY 2012: 

Information dissemination. AUCD led the dissemination of topical information from multiple 

UCEDDs and others whose work affects the lives of individuals with developmental disabilities. 

They disseminated the information through multiple channels: electronic newsletters, papers 

and/or reports, topical pages on the UCEDD Resource Center website, and state-of-the-art 

Internet technologies such as real-time online discussions, multipoint video conferencing, and 

web-based audio/video broadcasts on emerging topics that affect individuals with developmental 

disabilities and their families. AUCD also monitored multiple sources of information on topical 

areas related to developmental disabilities and UCEDD operations, and disseminated relevant 

information to the network of 68 UCEDDs through four types of electronic newsletters: 

Announcements (produced 162 issues of the semiweekly newsletter), Resources (83 issues of the 

weekly newsletter), Funding Opportunities (87 issues of the weekly newsletter), and the 

AUCDigest (26 issues of the monthly newsletter). 

Developing and maintaining UCEDD resource webpage. AUCD maintained and updated the 

UCEDD Resource Center webpage (www.aucd.org/urc) with:

• AIDD information, the DD Act, related resources, archived UCEDD Resource Center 

events, meetings, and webinar resources; 

• General information about UCEDD grants, guidance on continuation applications and 

grant modifications, grant management documents and historical documents; 

• UCEDD annual report requirements, technical assistance materials and workgroup 

meeting notes and materials; 

• AIDD Monitoring and Technical Assistance Review System resources, tool, schedules, 

and related resources; 

• Guidelines for onsite technical assistance visits; 

• Promising practice briefs and Consumer Advocacy Council orientation curriculum. 

• National Training Initiative materials; 

43 
• Additional AIDD project information and resources including leadership development, 

inclusive practices, and cultural and linguistic competency.

Convening national training events and maintaining communication. AUCD maintained 

communication with UCEDDs, workgroups, partners and funders through conference calls, 

online meetings, video chat, conferences and other means to inform the development of all 

technical assistance activities. AUCD also disseminated relevant results through compilation, 

analysis and dissemination of state-of-the-art training, research policies and annual publications 

of innovative practices. 

During FY 2011 and FY 2012, AUCD undertook activities to convene UCEDD leadership and 

members: 

• Convened and facilitated a one- and a half-day annual Directors Technical Assistance 

Meeting; 

• Coordinated and convened network partner collaboration meeting for UCEDDs, DDCs 

and P&As; 

• Planned and implemented for 42 participants a new UCEDD Leadership Institute in 

collaboration with The National Leadership Consortium on Developmental Disabilities at 

the University of Delaware to address issues related to /UCEDD senior leadership, and 

supporting emerging leaders from culturally and linguistically diverse backgrounds; 

• Convened meetings of project advisory committee to solicit input regarding national 

emerging needs and feedback on implementation of technical assistance contract; 

• Maintained web portal with links to each of the 68 UCEDD websites and updated a 

UCEDD directory with contact information for each center, its leadership and key staff; 

• Convened and facilitated 1.5-day training sessions to orient 11 new UCEDD Directors 

and key leaders to their roles.

Designing and implementing technical assistance. AUCD designed and implemented targeted 

technical assistance to support UCEDDs as they carry out the mandated core functions and 

address specific topical issues. Technical assistance was administered through training events, 

workgroups, annual Directors Technical Assistance Meetings, onsite technical assistance visits 

and web-based outlets.

Technical assistance for reporting requirements. AUCD provided assistance for AIDD 

reporting requirements and the evaluation of overall program performance through maintenance 

of the National Information Reporting System (NIRS); annual trainings and regular conference 

calls with UCEDD data coordinators; annual Directors’ Technical Assistance Meetings; rapid 

response technical assistance; systematic review, including measurement measures, to further 

develop and revise the AIDD reporting system; and onsite technical assistance. AUCD 

participated in the following activities:

• Planned and implemented new data coordinator orientations, training a total of 27 staff. 

• Supported AIDD’s work to revise the UCEDD program performance report and 

performance measures by conducting a pilot, implementing data management system 

changes, developing resources, and conducting training. 

44 
• Solicited UCEDD input for design changes to NIRS. 

• Provided ongoing technical assistance by e-mail and phone to UCEDDs to solve 

problems, support data entry in NIRS, and develop annual report. 

• Provided AIDD with electronic copies of UCEDD annual reports.10

Technical Assistance for P&As — National Disability Rights Network (NDRN) 

The Training Advocacy and Support Center (TASC) contract is designed to improve program 

performance, statutory compliance and systems change across the P&As. NDRN provides 

training and technical assistance to the 57 P&As across the United States and its territories that 

protect the interests of individuals with disabilities. TASC provided training and technical 

assistance to help P&A staff members enhance their ability to effectively advocate on behalf of 

all people with disabilities. 

NDRN involved the P&As in directing technical assistance toward the most critical needs and in 

identifying and providing technical assistance resources. NDRN recruited P&A staff, board and 

committee members to sit on TASC advisory committees that provide advice on technical 

assistance issues to the contractor and federal staff, and devote time to technical assistance 

resource development through their members. 

In 2012, as a result of NDRN’s technical assistance work for P&As: 

• 82 percent of participating P&As indicated that they have improved their skills in 

protecting individuals from abuse and neglect; 

• 79 percent have improved their skills for pursuing legal or administrative remedies; 

• 81 percent have indicated that they have improved their skills in providing information 

and referrals; 

• 88 percent indicated that they have improved their skills at engaging in advocacy or selfadvocacy; 

• 55 percent indicated that they have improved their skills at engaging in priority setting or 

governance activities, including changing questions to meet the client’s level of 

understanding and stressing self-advocacy rather than just advocating. 

NDRN carried out a wide range of activities under the TASC contract:

• Staff resources were made available to P&As by e-mail and phone, with experts 

providing consultation on disabilities law, organizational management and board 

management. Additionally, staff responded to more than 1500 programmatic issues per 

year, especially with regard to abuse, neglect, seclusion, restraint, community integration 

and ADA compliance. Staff also responded to nearly 400 P&A management related 

issues per year; 

• Training meetings and problem-solving conferences were provided to nearly 1,200 

trainees per year (e.g., annual CEO Meeting, new CEO training, annual Fiscal Manager 

Meeting, new fiscal manager training, annual Legal Directors Meeting and a general 

Annual TASC Conference); 

10 AUCD Contract Year-End Reports, 2011 and 2012. 

45 

 
• Teleconferences and web-based training addressed emerging issues, such as trainings on 

new provisions in the Individuals with Disabilities Education Act, which was carried out 

in six sessions with about 60 attendees per session; 

• Onsite training to 19 P&As was provided to address specific needs. Onsite trainings 

were conducted on board member roles, strategic planning and management issues; 

• Monthly newsletters were produced, including one monthly newsletter on general P&A 

issues, a monthly legal issues newsletter, and multiple monthly Q&A fact sheet; 

• Maintained a website dedicated to TASC that features a calendar of technical assistance 

events and resources such as dockets (a compendium of legal advocacy being carried out 

by other P&As) and manuals in areas of P&A best practices; 

• Manuals were developed to provide guidance to P&A managers on issues and best 

practices (e.g., outreach practices manual, access issues manual, communications 

handbook, guide to practice for P&A attorneys, information and referral manual); 

• Listservs were managed for issues such as legal advocacy, abuse and neglect, and 

education; 

• Three Legal Backup Centers are subcontracted to develop technical assistance resources 

and provide legal advice and support in highly specialized areas of disabilities law, such 

as foster care, Medicaid and health care, and conditions in communities and institutions. 

They have responded to more than 800 requests for technical assistance, supported nearly 

100 legal actions, and developed nearly 50 written technical assistance pieces per year; 

• NDRN continued its Passport to Advocacy learning program, which structures training 

for non-attorney advocates.11

Technical Assistance for Councils — National Association of Councils on Developmental 

Disabilities (NACDD) 

Similar to the technical assistance contract for P&As, the Council technical assistance contract 

works to improve program performance, statutory compliance and systems change across the 

network of Councils in the United States. The project - Information and Technical Assistance 

Center for Councils (iTACC) – identifies and implements program-specific and/or cross-cutting 

initiatives that support the improvement of Council operations and performance. 

In FY 2011 and FY 2012, NACDD used federal and non-federal experts to provide technical 

assistance through a wide array of methods, such as onsite consultations, annual training events 

and webinars. 

AIDD technical assistance institutes. The theme for the 2011 Technical Assistance Institute 

was Maximizing Effect: Strengthening Council Effectiveness and Accountability and was 

attended by 149 people. It featured a keynote by Sam Durbin, an advocate and author of 

“You’re Not the Boss of Me.” Presentations covered topics such as an international view of 

disability rights, accountability, person-centered planning, effective management, employment 

first, and youth leadership. 

11 NDRN Contract Year-End Reports, 2009 and 2010.

46 

 
Information dissemination. (iTACC) hosted a website that is the primary information 

dissemination vehicle to councils, and operated a listserv. In FY 2011, 41 posts were made and 

in FY 2012, 36 posts were made to the listserv. 

Rapid response. Through iTACC, NACDD assisted the DDCs in carrying out congressionally 

mandated activities by providing DDC members, staff and executive directors with access to 

information, technical assistance and training resources quickly. In FY 2011, 189 requests were 

received and completed by iTACC staff and in FY 2012, 266 requests were received and 

completed by iTACC staff. 

Program Performance Report. iTACC assisted with revising the DDC program performance 

report (PPR) template to improve the reporting process and DDC performance measures. The 

PPR is an evaluative tool that the DDCs use to assess progress on the Five Year State Plan. 

iTACC assisted with convening and facilitating workgroup discussions, receiving input from 

DDCs on draft measures, gathering information, and providing their expertise.

DDC Five-Year Plans. NACDD assisted with revising the DDC Five-Year Plan template to 

improve the planning process. The Five-Year Plan is a strategic tool that the DDCs use to guide 

their work. It includes long-term goals and provides guidance to DDCs for using resources. The 

new template emphasizes the use of national data sets, such as the State of the States in 

Developmental Disabilities and the American Community Survey; focuses on emerging issues in 

health care and long-term services and supports, particularly related to the Affordable Care Act; 

and calls for more relevant competitive, integrated employment opportunities for people with 

developmental disabilities.12 

Technical Assistance for Projects of National Significance: Family Support – BETAH 

Associates 

AIDD funds a contract to BETAH Associates to provide technical assistance to AIDD’s family 

support grantees. Awarded in FY 2009, this contract promotes knowledge sharing, collaboration 

and understanding; builds skills; and facilitates collaborative problem solving among Family 

Support 360 grantees. Achievements included: 

• Provided training and technical assistance to 22 grantees (FY 2011-2012). 

• Grantees completed 1,097 family service plans (FY 2011-2012).

• Grantees reported conducting 7,167 information and referral activities (FY 2011-2012). 

• The technical assistance website received 2,346. The Family Support 360 Technical 

Assistance Institute, held May 2nd-4th, 2012, with a theme of Family Support 360: 

Compassion and Collaboration: A Path to Empowerment. The Technical Assistance 

Institute received a 3.36 out of 4.00 rating from the grantees, reflecting its 

effectiveness.

13

12 NACDD Contract Year-End Report, 2009 and 2010. 13 BETAH Associates Contract; Final Report, January 31, 2013.

47 

 
Technical Assistance for Project of National Significance: Partnerships in Employment 

Systems Change (PIE) - Institute for Community Inclusion (ICI)

AIDD funds a cooperative agreement to ICI to provide technical assistance to AIDD’s PIE grants. 

Awarded in 2011, this grant promotes knowledge sharing and resources for systems change, discuss ideas 

to address employment challenges, promotes collaboration and understanding, and build skills. This 

project also provides assistance in developing performance benchmarking for the Partnerships in 

Employment Systems Change grantees. The PIE Annual Meeting was held July 17-18th. Topics 

discussed at the annual meeting included Issues and Solutions Promoting Increased Employment/Career 

Development for Youth and Young Adult: Using indicator data to inform system improvement, legal 

analysis, building local collaborative to inform system improvement, and Making Transition work for 

Students and their Families. 

Information Collection and Dissemination 

ICF International supported the Developmental Disabilities Program Information Resources 

Management (PIRM) contract. ICF ensured that program information resources generated by 

AIDD and its grantees were collected, analyzed, synthesized and disseminated using techniques 

that provide maximum utility to AIDD stakeholders. The PIRM contract provided technical 

assistance for online data collection, statistical and analytical reports, and development and 

maintenance of the AIDD Internet and intranet sites, as well as publication, production and 

information dissemination. 

AIDD websites

AIDD’s internet and intranet sites are crucial for providing information to AIDD grantees, the 

disability community and the general public. The PIRM contract provided development and 

maintenance for these sites and ensured that all online content is accessible and section 508 

compliant.

Publications

ICF used the material gathered through online data collection and other reporting systems to 

develop multiple publications and communications materials for AIDD. Under this contract, ICF 

wrote and/or edited all AIDD publications, including web content; AIDD’s newsletter, the AIDD 

Update; and various brochures providing an overview of IADD’s programs and successes. 

48 
Chapter 8: Interagency Collaboration

Interagency collaboration is an essential part of the work conducted to ensure the successful 

implementation of the DD Act and positive, productive futures for individuals with 

developmental disabilities across the United States. 

Given the complexity of federal, state and local programs and services that touch the lives of 

individuals with disabilities, cross-agency dialogue is essential to address the challenges and 

issues facing this group. 

AIDD has undertaken many partnerships and collaborative efforts over the past two fiscal years. 

Administration for Community Living

As a result of the Community Living Initiative, collaboration occurred within HHS between the 

Administration on Aging, the Administration on Intellectual and Developmental Disabilities, and 

Office on Disability to begin the formation of the HHS Administration for Community Living. 

The leadership and staff of the aforementioned offices worked during 2011 and 2012 to lay the 

groundwork for the new division. 

Affordable Care Act 2402(a) workgroup. 

In 2011 and 2012, AIDD continued participation in the 2402(a) workgroup to develop guidance. 

In order to provide guidance to stakeholders on key aspects of home- and community-based 

services, the HHS Office on Disability has convened a workgroup of representatives from key 

HHS agencies to implement Section 2402(a) of the Affordable Care Act, “Oversight and 

Assessment of the Administration of Home and Community Based Services.” Section 2402(a) 

gives the Secretary authority to encourage states to create an HCBS system that is designed to 

provide individuals, their families, caregivers or other representatives the support and 

coordination needed to design an individualized, self-directed, community-supported life. 

The 2402(a) workgroup developed consensus on several of the key areas of Section 2402(a). 

These include the following topics: 

• Overview of HCBS; 

• Participant direction; 

• Person-centered planning; 

• Quality and system improvements; 

• Participant rights and safeguards; and

• Provider qualifications and workforce development. 

49 
Expanding Opportunities with the Office of Child Care

In 2011, AIDD continued its participation in Expanding Opportunities with the Office of Child 

Care (formerly Child Care Bureau), Office of Head Start and the U.S. Department of Education 

Office of Special Education Programs. Each year, cross-agency teams from three or four states 

participate to develop and implement plans with the goal of increasing inclusive opportunities for 

young children with disabilities to improve the quality of early care and educational programs 

and services in their communities, and to make their findings and resources available to other 

states. In 2011, AIDD supported staff from the UCEDDs in Arkansas, Mississippi, Nevada, and 

South Carolina to participate on the state team. 

AIDD participated in conference calls to discuss the process for identifying participating states, 

assisted in review of applications to determine participating states, notified UCEDD and contract 

staff regarding procedures for participation and support, and implemented an evaluation of the 

initiative. 

Interagency Autism Coordinating Committee 

The AIDD Commissioner is a federal member of the Interagency Autism Coordinating 

Committee (IACC), and staff from AIDD are serving on working groups to assist with updating 

the IACC Strategic Plan for Autism Spectrum Disorders.

The IACC is a federal advisory committee that coordinates all efforts with HHS concerning 

autism spectrum disorder. Through its inclusion of both federal and public members, the 

committee helps ensure that a wide range of ideas and perspectives are represented and discussed 

in a public forum. 

Early Childhood

AIDD staff collaborated with other federal agencies, such as the Administration for Children 

(ACF) and Families on a variety of early childhood initiatives, providing expertise and 

recommendations regarding infants and young children with disabilities when needed. For 

example, staff participated in a cross-agency workgroup led by ACF to develop a resource on 

screening instruments. 

Federal Partners in Transition Workgroup

The workgroup allows federal agency staff to discuss and share information about what their 

respective agencies are currently doing or planning to do in the area of transition. In 

collaboration with representatives from the National Council on Disability, the Departments of 

Education, Justice, Labor and Transportation, the Equal Employment Opportunity Commission 

and the U.S. Social Security Administration, AIDD and other offices within HHS compiled a 

Transition Resource Directory that provides descriptions of federally-supported projects and 

centers that focus on youth transitions. 

50 
Federal Partners workgroup meetings 

Staff participated in monthly conference calls of various federal agencies in HHS concerned with 

early childhood issues. In addition, AIDD led an monthly meetings of an inter-agency 

workgroup that provides funding to the P&As. Agencies included are Rehabilitation Services 

Administration in the U.S. Department of Education, the Social Security Administration, the 

Health Resources and Services Administration in HHS, and the Substance Abuse and Mental 

Health Services Administration, also in HHS. During these calls, the federal partners discuss new 

and on-going issues with the P&As, federal monitoring processes, and evaluation and 

accountability efforts. 

AIDD/Department of Labor-Office of Disability Employment (ODEP)

The purpose of this MOA is to work collaboratively with ODEP to expand and promote 

integrated employment as the first employment option for individuals with developmental and 

other significant disabilities, including intellectual disabilities via both the AIDDs and ODEPs 

employment initiatives. These two initiatives are complementary efforts that reflect the mutual 

commitment of ODEP and the AIDD to the concept of Employment First for all individuals with 

disabilities, regardless of disability label or need for support in finding and retaining 

employment. 

The Competitive Employment Workgroup (CEWG) is an interagency federal partnership 

workgroup aimed at promoting systems change in the area of competitive integrated employment 

and is led by Eve Hill, Deputy Assistant Attorney General, Civil Rights Division at the U.S. 

Department of Justice. AIDD participates in the workgroups and has provided the valuable 

perspective of the DD Community. 

51 
Conclusion: Envisioning the Future

This report offers examples of the successful implementation of each of the core values defined 

by the DD Act: Self-determination, Independence, Productivity, and Inclusion and 

Integration. AIDD grantees have worked tirelessly to embody these values and achieve their 

goals of providing a better, more fulfilling life for individuals with developmental disabilities. 

AIDD’s work to strengthen health care and supports, increase employment opportunities, expand 

educational opportunities, protect civil rights, promote access to community living, and support 

the development and use of accessible technologies has successfully supported the opportunity 

for brighter futures for Americans with developmental disabilities. 

AIDD’s work supports approaches that shape attitudes, raise expectations, change outdated or 

broken systems and empower individuals with disabilities to pursue the lives they imagine for 

themselves. To that end, AIDD provides financial and leadership support to organizations in 

every state and territory in the United States. These bodies assist individuals with developmental 

disabilities of all ages and their families with obtaining the support they need to achieve all the 

aspects of a life envisioned and defined by the DD Act. 

AIDD and its network continue to support the changing needs of individuals with developmental 

disabilities and evaluate their quality of life so that more effective solutions can be devised.

Now, more than ever, these and other collaborations between service systems and the individuals 

they support, among state and federal government agencies, and across the DD network are 

essential to ensuring success and a brighter future for all. 

52 
53 
Appendix: Program Performance Data

54 
Protection & Advocacy Agencies (P&As) — Selected Data

Areas of Emphasis:

Core Outcomes

FY 2011 FY 2012

Area of 

Emphasis 

Description of 

Area of 

Emphasis

Individuals Number of 

P&As

Individuals Number of 

P&As

Employment Adults have jobs 

of their choice

297 39 280 42

Education Students have 

education and 

support they need 

to reach 

educational goals

6,580 57 6,248 55

Housing Have homes of 

their choice

497 48 451 45

Health Have needed 

health services

1,828 54 1,959 53

Child Care Children in 

inclusive child 

care settings

129 23 94 24

Transportation Have 

transportation 

services

103 33 86 28

Quality Assurance Benefit from P&A 

quality assurance 

efforts

103 33 86 28

Complaints of 

Abuse, Neglect, 

Discrimination or 

Rights Remedied

Complaints were 

addressed and 

situation were 

resolved

9,470 56 9,638 56

55
Developmental Disability Councils (DDCs)— Selected Data – FY 2011

Areas of Emphasis Description of Area of 

Emphasis 

Number of Individuals Number of DDCs

Employment Adults have jobs of their choice 2,122 36

Education Students have education & 

support they need to reach their 

educational goals

26,063 25

Housing Have homes of their choice 770 19

Health Have needed health services 10,897 10

Child Care Children in inclusive child care 

settings

538 5 

Transportation Have transportation services 16,134 18

Quality Assurance Benefit from Councils’ quality 

assurance efforts

165,177 41

Formal/Informal 

Community Services

Individuals benefiting from 

formal/informal community 

services

49,261 38

Developmental Disability Councils (DDCs) — Selected Data – FY 2012

DDC Activities Number of Individuals Number of DDCs 

People trained in area related to 

goal/objective

162,531 55

People trained in leadership, selfadvocacy, and self-determination45,243 51

56 
People trained in systems advocacy 49,091 51

People active in systems advocacy 65,477 52

People attained membership on 

public/private bodies and leadership 

coalitions

3,093 48

Programs/policies created or improved 3,656 50

Number of organizations involved in 

coalitions, networks, or partnerships

17,459 53

Organization engaged in systems change 

efforts

13,385 51

Number of public policymakers 

educated

28,853 53

Members of general public reached 25,072,688 52

57
University Centers of Excellence in Developmental Disabilities Education, 

Research and Service (UCEDDs) — Selected Data

Core Functions

FY 2011 FY 2012 

Core 

Functions

Description of Core 

Function

Individuals Number of 

UCEDDs

Individuals Number of 

UCEDDs

Research

Number of researcher 

activities undertaken

80,5891 56 168,625 62

Technical 

Assistance

Interdisciplinary preservice preparation and 

continuing education 1,190,020 65 483,780 65

Direct Services Direct or model 

demonstration services

97,069 51 87,468 57

Information 

Dissemination

Number of individuals 

reached through 

information dissemination 3,363,917 62 7,151,164 64

Trained Professionals trained

40,676 65 52,062 65

58 
59 
Appendix: The Protection and Advocacy for 

Individuals with Mental Illness (PAIMI) 

Program Activities Report For

Fiscal Years 2011 And 2012 

60 
INTRODUCTION

This report summarizes the annual activities for Fiscal Years (FY) 2011 and 2012 of the 

Protection and Advocacy for Individuals with Mental Illness (PAIMI) Program, grantees funded 

and administered by the Substance Abuse and Mental Health Services Administration 

(SAMHSA), Center for Mental Health Services (CMHS), [The Public Health Service (PHS) Act 

at Subpart 3, 42 U.S.C. 290bb - 31(a) and (b) (7)]. Each PAIMI grantee is required to transmit 

an annual report to the Secretary of the Department of Health and Human Services (HHS), that 

describes its program activities, accomplishments, and expenditures during the most recently 

completed FY [42 U.S.C. 10805(a)(7)]. SAMHSA summarizes the grantee activity information 

and prepares a report, which includes aggregate data for the Secretary [the PAIMI Act at 42 

U.S.C. 10824]. 

HISTORICAL OVERVIEW

The Developmental Disabilities Assistance and Bill of Rights Act of 1975, commonly known as 

the DD Act, established systems in each state, the District of Columbia, and five territories to 

protect the legal and human rights of individuals with developmental disabilities [42 U.S.C. 

6041]. These entities, the state Protection and Advocacy (P&A) systems, were governordesignated and approved by the Administration on Developmental Disabilities (ADD), within the 

Administration for Children and Families (ACF). The DD Act authorized formula grants to each 

eligible state P&A system to support activities on behalf of individuals with developmental 

disabilities through the Protection and Advocacy for Developmental Disabilities (PADD) 

Program administered by ADD/ACF. ADD/ACF, the first P&A program, is the lead federal 

agency on matters pertaining to designation or re-designation of a P&A system. In April 2012, 

ADD was renamed, reorganized, and relocated. ADD is now known as the Administration on 

Intellectual and Developmental Disabilities (AIDD), within the Administration for Community 

Living (ACL). 

The PAIMI Act of 1986 [42 U.S.C. 10801 et seq.] extended the DD Act protections to 

individuals with significant (serious) mental illness (adults) and significant (severe) emotional 

impairments (children/youth) at risk for, or in danger of abuse, neglect, and rights violations 

while residing in public or private residential treatment facilities. The same ADD-approved, 

governor-designated state P&A systems that received PADD Program funding were authorized 

to administer the PAIMI Program. 

The PAIMI Act [42 U.S.C. 10801(b)] mandated state P&A systems: 

1) To protect and advocate for the rights of residents with significant (serious) mental illness 

(adults) and significant (severe) emotional impairments (children and youth), residing in 

public and private care and treatment facilities who are at risk for, or in danger of abuse, 

neglect, and rights violations by using administrative, legal, systemic, and legislative, or 

other appropriate remedies on their behalf; 

2) To investigate reports of abuse, particularly incidents involving serious injuries and 

deaths related to the inappropriate use of seclusion and restraint; and

 61 
3) To ensure enforcement of the United States Constitution, federal laws and regulations, 

and state statutes. 

In 1986, there were 56 P&A systems located in each state, the District of Columbia, and five 

territories (American Samoa, Guam, the Commonwealth of the Northern Mariana Islands, the 

Commonwealth of Puerto Rico, and the U.S. Virgin Islands). At that time, 45 P&A systems 

operated as private, non-profit organizations (as designated by the respective state Governors) 

and 11 were state-operated (Alabama, American Samoa, Connecticut, Indiana, Kentucky, New 

York, North Carolina, North Dakota, Ohio, the Commonwealths of Puerto Rico, and Virginia). 

These public/state-operated systems were independent of any agency in the state that provided 

treatment or services (other than advocacy services, to individuals with mental illness [42 

U.S.C.10805 (a) (2)]). 

In 2000, the PAIMI Act was amended by the Children’s Health Act of 2000 (the CHA at 

42 U.S.C. 290 et seq.). The CHA established a 57th P&A system for Native Americans, the 

American Indian Consortium (AIC), which is composed of the Navajo Nation and Hopi tribal 

councils. The AIC serves the Navajo and Hopi residing on tribal lands, as well as other tribes 

residing in areas close to the reservations and the Four Corners region of the Southwest (Utah, 

Arizona, Colorado, and New Mexico). The CHA (42 U.S.C. 290ii) requires that “public or 

private general hospital, nursing facility, intermediate care facility, or other health care facility 

that receives support in any form from any program supported in whole or in part with funds 

appropriated to any federal department or agency shall protect and promote the rights of each 

resident of the facility. This includes the right to be free from physical or mental abuse, corporal 

punishment, and any restraints or involuntary seclusions imposed for purposes of discipline or 

convenience.” Each facility covered under the PAIMI Act shall notify the appropriate agency, as 

determined by the Secretary, of each death that occurs at each such facility, while a patient is 

restrained or in seclusion, of each death occurring within 24-hours after the patient has been 

removed from restraints and seclusion, or where it is reasonable to assume that a patient's death 

is a result of such seclusion or restraint. A notification under this section shall include the name 

of the resident and shall be provided no later than seven days after the date of the death of the 

individual involved (op. cit. at 42 U.S.C. 290ii - 1). This Act clarified that the state P&A 

systems had the authority to investigate incidents of restraint and seclusion in these types of 

facilities.

The PAIMI Act of 2000 also allowed state P&A systems to serve PAIMI-eligible individuals 

who lived in the community, including their own homes; however, individuals residing in care 

and treatment facilities must have priority for program services. In 2005, ADD approved a 

request from the Governor of North Carolina to re-designate the state-operated P&A system to a 

private, nonprofit entity. In FYS 2011 and 2012, there were 10 state operated P&A systems in 

Alabama, American Samoa, Connecticut, Indiana, Kentucky, New York, North Dakota, Ohio, 

and the Commonwealths of Puerto Rico and Virginia. 

FUNDING

Each P&A system must submit an annual application or an update of its program priorities, 

proposed budget, assurances and any other information requested by SAMHSA [PAIMI Act at 

42 U.S.C. 10821]. These awards, subject to availability of appropriations, are based on a 

62 
formula prescribed by the statute. The formula is based equally on the population of each state 

in which there is an eligible system and on the population of each state weighted by its relative 

capital income [42 U.S.C. 10822 (a) (1) (A) (i) and (ii)]. Relative per capita income is the 

quotient of the per capita income of the state. The quotient of one was assigned to American 

Samoa, Guam, the Commonwealth of the Northern Mariana Islands, and the U.S. Virgin Islands 

[42 U.S.C. 10822 (a) (1) (B)]. The Secretary shall use no more than two (2) percent of the 

amount appropriated, commonly known as the set-aside under the PAIMI Act, to provide 

technical assistance and training to eligible systems [42 U.S.C. 10825]. 

The following chart reflects the total annual PAIMI Program grant appropriations, the Technical 

Assistance (TA) set-aside, and the minimum and maximum grant allotments awarded to the 

states and the territories in FY 2011 and 2012. In FY 2012, the PAIMI Program grant was 

reduced by 0.19 percent, a $68,860 reduction in the total awards to the state P&A systems and a 

$1,377 decrease in TA. In FY 2012, California, the largest state P&A system, received $6,037 

less in PAIMI grant funds, the minimum state allotment P&A system grants were reduced by 

$800, and the American Indian Consortium, American Samoa, Guam, the Commonwealth of the 

Northern Mariana Islands, and the U.S. Virgin Islands, each received $400 reduction. 

FY 2011 FY 2012

Total Annual PAIMI Awards $ 36,307,240 $ 36,238,380

To State P&A Systems $ 35,581,095 $ 35,513,612 

Technical Assistance Set-Aside $ 726,145 $ 724,768 

Minimum State Award $ 429,900 $ 429,100 

Maximum State Award $ 3,140,608 $ 3,134,571

Minimum Territory Award $ 230,300 $ 229,900

[See, Appendix - Table 1]

PAIMI PROGRAM ACTIVITIES 

A. Demographic Information

1. Age and Gender 

The following chart summarizes the number of PAIMI-eligible individuals or clients served in 

each FY by age and gender. 

FY 2011 FY 2012

Age in Years

0-4 34 22

5-12 1,323 1,228

13-18 2,543 2,455

19-25 1,342 1,258

26-64 10,440 10,031

65+ 787 920

Unknown 23 23

Total 16,492 15,937

Gender

63 
Male 9,442 8,999

Female 7,050 6,956

Total Served 16,492 15,955

[See, Appendix, Table 2] 

2. Ethnicity and Race 

PAIMI clients served by the P&A systems self-identified their ethnicity and race. The following 

chart provides the ethnicity and racial identities reported by individuals served by the P&A 

systems. The information was self-reported and the individuals/clients served were permitted to 

select one or more races. The totals may exceed the number of PAIMI-eligible persons served. 

Ethnicity FY 2011 FY 2012

Hispanic/Latino 1,509 1,308

Race

American Indian/Alaskan Native 419 388

Asian 191 208

Black/African American 3,467 3,386

Native Hawaiian/Pacific Islander 232 419

White/Caucasian 10,954 10,341

 [See, Appendix, Table 3] 

3. Living Arrangements

P&A systems served individuals who resided in various settings. Examples of these living 

arrangements included: 

Arrangement Type FY 2011 FY 2012

Independently in the community 4,685 4,715

Adult Community residential home 679 631

Psychiatric wards 1,548 1,323

Public and private institutions 3,102 3,059

Legal Detention/Jail 747 794

Homeless 343 372

[See, Appendix, Table 4] 

B. Services to Individuals 

Under the PAIMI Act, state P&A systems are mandated to protect and advocate for the rights of 

individuals with mental illness and authorized to investigate complaints of abuse, neglect, and 

rights violations [42 U.S.C. 10805(a)(1)]. The following table shows the total number of 

individual PAIMI abuse, neglect and rights violation cases opened, investigated, and closed. 

1. Abuse 

Number and types of closed individual abuse complaints include: 

64 
 FY 2011 FY 2012

Abuse Complaints, Investigated and Closed 3,389 2,954

By Complaint Type

Inappropriate/excessive use of restraints 358 358

Inappropriate/excessive medication 216 220 

Involuntary electroconvulsive therapy 12 12

Failure to provide mental health treatment 912 786

Physical assaults resulting in serious injuries 249 128

Sexual assaults 129 120

Staff threats/retaliation/assaults 190 190

[See, Appendix, Tables 5 – 7c] 

Case Example from Fiscal Year (FY) 2011 

INDIANA – failure to provide adequate psychiatric treatment

A 36-year-old Hispanic male, with limited English language skills, had resided in a local 

psychiatric hospital for two years awaiting a competency evaluation. The facility never provided 

him with an interpreter. The P&A interceded and negotiated with the hospital on the client’s 

behalf. The P&A wanted the client to obtain competent interpreter services, adopted a 

comprehensive communication policy, and provided an adequate number of interpreters. The 

P&A intervention resulted in the client receiving translation services that facilitated his ability to 

communicate with facility treatment staff and residents.

NEW MEXICO – excessive restraint

A young woman resident of a local treatment center was restrained for two hours and 37 minutes 

for refusing to attend her program. The length of her restraint exceeded the maximum time 

allowed per state regulations. The P&A staff interviewed her and sent their findings to the 

facility administrator. An internal investigation by the Director of Quality Improvement and 

Facility Operations resulted in major systemic changes in the treatment facility’s operations. 

Examples of these systemic changes included, increased facility staff training (on time 

limitations in restraint and seclusion), banning staff use of prone restraints, holding treatment 

team meetings within five-days of a restraint incident, and implementing policies to allow 

residents private time. 

SOUTH DAKOTA – failure to provide appropriate mental health treatment

A 31-year-old male inmate of state minimum-security prison requested P&A assistance to obtain 

access to medications prescribed prior to his incarceration. The client alleged that prison staff 

had decreased his medications so much that they were ineffective. The client knew that without 

medication he would display behaviors that may prolong his sentence. The P&A staff provided 

him with advice and guidance on how to self-advocate. The client was eventually released from 

prison and returned to the community where he requested further assistance. P&A staff met with 

the client’s parole officer and contacted the community mental health provider and social 

services agency to resolve the client’s medication issue. These efforts resulted in the client’s 

ability to receive his prescribed medications.

65 
TEXAS – seclusion and restraint/discharge planning

A state-operated psychiatric facility resident contacted the P&A for discharge planning 

assistance. A review of the client’s record included numerous incidents of chair restraint and 

periods of prolonged seclusion, sometimes up to 20-hours per day. The client’s presenting issue 

was the facility’s misapplication of the standard for release from restraint and seclusion. The 

direct care staff required that the resident be totally calm prior to release. The P&A successfully 

advocated for a more appropriate behavioral intervention and the development of a safety plan 

for its client. The number of incidents of restraint and seclusion plummeted prior to the client’s 

discharge. In addition, the P&A conducted in-service training for facility staff on appropriate 

restraint and seclusion release criteria consistent with state law and regulations.

WASHINGTON – inappropriate use of seclusion and restraint/facility monitoring

The P&A investigated several complaints involving the inappropriate use of Restraint and 

Seclusion (R&S) on youths residing in a mental health treatment facility. Facility staff used 

R&S after incidents involving property destruction. Findings in two separate P&A 

investigations noted that staff failed to follow established R&S state laws and facility policies. 

P&A intervention resulted in a written agreement requiring the treatment facility to implement 

action plans to correct 13 problem areas identified by the P&A. To ensure compliance, the P&A 

will monitor the residential facility's progress. 

WEST VIRGINIA - inappropriate use of seclusion and restraint/serious injury

A state hospital resident requested P&A assistance after sustaining bruises and being forcibly 

injected with a sedative while being restrained by facility staff. The nursing staff confirmed that 

following the restraint incident, the client received medical care and that a grievance was 

properly reported to, and investigated by, the administration. P&A staff shared this information 

with their client who was satisfied with the hospital’s response. The P&A staff also educated 

their client on how to file a grievance. 

Case Examples FY 2012 

ALABAMA – Failure to provide mental health treatment, abuse & neglect

A 17-year-old youth who resided in a state juvenile correction facility was placed on close 

observation for prior suicide threats. Facility staff denied the teen’s request to have the nurse 

change the dressing on his injured hand. When the teen refused to leave his cell to participate in 

regular facility activities, staff promised to take him to the nurse. When the teen left his cell, a 

staff member reneged on the medical treatment. This upset the teen. He ran from staff, found 

some plastic material in a facility employee workstation, and placed it over his face. The P&A 

reviewed the facility's incident report and video surveillance recordings. The P&A investigative 

findings noted that facility staff deliberately lied to lure the patient from his cell and did not 

implement the patient’s “close observation order” following his suicidal gesture. The facility 

fired the employee who lied to the patient. To ensure that staff implement the facility’s Suicide 

Prevention and Intervention protocol, the P&A recommended that the facility clarify its policies, 

so that suicidal gesture incidents are no longer viewed as safety violations that lead to 

disciplinary actions against facility residents. 

66 
MICHIGAN – physical abuse 

A state ward residing in a residential treatment center was shoved to the ground by a staff person. 

The young woman sustained a back injury. The P&A intervened on their client’s behalf and 

filed a complaint alleging improper physical restraint with the state licensing agency. The 

licensing agency substantiated the P&A’s allegations. The employee was disciplined and all 

facility staff were retrained on proper behavior support and de-escalation protocols. 

NEW JERSEY – seclusion and restraint, abuse and rights violations

The P&A continued to advocate on behalf of three young female residents placed in three state‐

operated psychiatric hospitals. The facilities continued to restrain or seclude the women for 

behaviors attributed to their past traumas (violent sexual and physical abuse). One woman, who 

facility staff placed in four‐point restraints hundreds of times, complained that after each 

incident, she had flashbacks of abuse by a family member. Although earlier efforts by P&A staff 

stopped the use of four‐point restraints on these women, hospital staff continued mistreating 

them, e.g., confining one woman for several months to a small “comfort” room with only one 

exit guarded by facility staff. The hospital did not consider its practice as seclusion and stated 

that it was the result of a behavioral contract signed by the patient. The three women have one‐

to‐one observation orders that provide them with little privacy or autonomy during their 

hospitalization.

TENNESSEE – abuse investigations, staff (Non-death related)

The P&A investigated an allegation that a rural boarding school resident was abused by staff. 

The resident’s mother reported that following an incident with school staff, her son's hand was 

broken and emergency surgery was needed. The facility administration and local law 

enforcement investigated the incident, which resulted in the arrest and termination of the school 

employee. The client’s mother expressed concern about other facility residents at risk for abuse 

(the boarding school specialized in behavioral intervention for adolescent boys with emotional 

impairments and other disabilities). The P&A staff investigation included four unannounced 

facility visits and resulted in educating boarding school faculty, staff and residents about the 

P&A’s responsibilities. 

VIRGINIA – restraint and abuse 

An individual, who retained his capacity for informed consent, was voluntarily admitted to a 

state-operated facility. When he objected to several prescribed psychotropic medications, 

facility staff restrained him and then gave him an intramuscular injection. During one restraint 

incident, the individual sustained a laceration above his right eye when he and the staff fell to the 

floor. The investigation, which substantiated facility staff abuse and violation of their client’s 

rights, resulted in the P&A educating the client on how to self-advocate and to file a 

grievance/complaint process. 

WYOMING – restraint & staff abuse

While reviewing Wyoming State Hospital (WSH) incident reports, P&A staff found several 

incident reports involving one patient who facility staff placed in prone restraint. The P&A used 

its probable cause authority and the hospital provided the name of the patient and his guardian. 

The guardian expressed concern about WSH staff use of inappropriate restraint techniques on the 

ward and authorized the P&A to investigate the incidents. The P&A investigation included 

67 
watching a security video of an incident. During that incident, the patient was held for five 

minutes, placed in prone restraint (face down on the floor) for an hour, secured to a restraint 

board, before being transported to another unit where he was placed in bed in four-point 

restraints. The P&A substantiated the incident of abuse and initiated a conference about its 

investigative findings of abuse by facility staff with the Wyoming Office of the Attorney 

General, the Department of Health (DOH), and WSH administration. P&A intervention resulted 

in WSH and DOH actions to eliminate the use of restraints by facility staff. 

2. Neglect 

Number and types of individual neglect complaints closed per FY included: 

FY 2011 FY 2012

Neglect, Complaints Investigated & Closed

By Complaint Type

 2,658 2,605

Discharge planning 1,134 1,176 

Personal care 292 268 

Mental health diagnoses 147 219 

Medical diagnoses 193 219 

Environmental safety 158 125 

Personal safety 127 115

No written treatment plans 138 124

[See, Appendix, Tables 6a & 6b] 

 

Case Examples from FY 2011 

KANSAS – personal care 

A state psychiatric hospital resident, a veteran with orthopedic issues, requested P&A assistance 

after hospital staff did not allow him to use his wheelchair. The staff also refused to assist him to 

get out of bed and complete daily tasks, which impacted his ability to participate in the facility 

treatment programs and his recovery. A P&A attorney intervened on his behalf and met with the 

client and hospital staff, including the director of the program. The P&A negotiated an 

agreement with the state hospital to allow the resident to use his wheelchair and to provide him 

with assistance when needed. In addition, the Veterans Affairs (VA) doctors informed hospital 

staff of the client’s medical needs. As a result of P&A intervention, the state hospital services 

and the VA follow-up care services provided to the client improved. The P&A educated hospital 

staff on how to better assist other facility residents with similar physical and mobility 

impairments in activities of daily living.

MARYLAND – discharge planning

The P&A intervened on behalf of a 20-year-old female, Residential Treatment Center (RTC), 

facility patient. The client, who had multiple RTC placements, remained in the RTC due to 

inadequate community placement resources. The client’s parents, who were her legal guardians, 

were not involved in her treatment and did not want her discharged to their home. The P&A 

staff met with the resident and her therapist, conducted a record review, and discussed placement 

options with RTC officials. P&A intervention resulted in the client’s discharge from the RTC 

and placement by the Maryland Mental Hygiene Administration in an appropriate community68 
based home with mental health support services. 

MASSACHUSETTS – discharge planning

The P&A intervened on behalf of a 57-year-old male, state psychiatric hospital resident, whose 

discharge was delayed. P&A staff reviewed their client’s facility record and worked with his 

health-care proxy/representative payee and brother on appropriate discharge planning. The client 

had an apartment in the community but his treatment team planned to discharge him to a rest 

home. The client was medication compliant and had no medical conditions that interfered with 

his ability to return to his apartment. Vigorous P&A advocacy resulted in the following 

discharge plan - a brief placement in a step down residence for the client to develop activities of 

daily living skills before returning to his apartment. The P&A’s successful advocacy resulted in 

a Massachusetts Department of Mental Health decision not to place the man under limited 

guardianship. 

NORTH DAKOTA – discharge planning/ recovery 

A 28-year-old female requested P&A assistance with discharge planning and alleged that 

hospital staff did not help her. The hospital staff informed the P&A that it presented options, 

which the client resisted as she wanted placement in a 24-hour supervised living arrangement. 

P&A staff met with the client and unit social worker to discuss, discharge planning. The P&A 

staff also met with the hospital’s psychiatric staff and staff from the human service center that 

served their client’s home community. An agreement was reached and the client agreed to be 

discharged to a crisis facility and receive supportive services from the human service center. 

P&A involvement resulted in achievement of the client’s goal - returning to her home 

community. 

OKLAHOMA – recovery/housing 

P&A assistance was requested by a PAIMI-eligible woman whose publicly funded housing 

refused to grant her an accommodation, as recommended by her therapist. The housing office 

had issued a notice to vacate. The client had no other housing options and faced homelessness. 

P&A staff negotiated with the housing agency to obtain the necessary accommodations, filed a 

grievance on the client’s behalf, and assigned an attorney to accompany the client to the informal 

grievance hearing. P&A intervention resulted in a settlement. The client received the 

accommodation she needed and retained her housing and ability to recover in the community. 

Case Examples from FY 2012 

GEORGIA – discharge planning/self-advocacy 

A 41-year-old mental health client participated in a Certified Peer Specialist training provided by 

the P&A. During one training session, the client met with, and informed the P&A Director of 

Advocacy Education; she was inappropriately discharged from an Assertive Community 

Treatment (ACT) program. The client had received verbal notice from ACT staff of her 

immediate discharge from the program. This action left the client with no support services for 

continued management of her mental health needs and jeopardized her significant progress 

toward health and well-being. The P&A supported the client’s efforts to address the 

inappropriate ACT discharge and lack of referral for services. P&A intervention resulted in the 

client’s access to appropriate mental health supportive services and treatment.

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MARYLAND – failure to provide mental health treatment 

The P&A investigated the failure of state hospital staff to provide necessary treatment to a 

patient. The patient had attempted suicide twice and requested individual therapy from hospital 

psychologists several times before and after his suicide attempts. The client was informed; he 

was not a “priority.’’ The P&A sent the Director of the Mental Hygiene Administration (MHA) 

a request to alert the hospital’s administration of the patient’s risk of suicide and to provide him 

with therapy. As a result of P&A intervention, the hospital assigned a psychologist to provide 

therapy. The P&A followed-up with MHA and hospital administration, to advocate for 

increased patient access to individual therapy with a psychologist. The hospital subsequently 

hired eight psychologists, and now every hospital has the opportunity to request and receive 

individual therapy. 

SOUTH CAROLINA – neglect/environmental safety

The P&A assisted an individual who had problems, while living at the Community Residential 

Care Facility (CRCF), e.g., verbal abuse at the facility. His mental health workers agreed that 

CRCF was not an appropriate environment for him. They felt the facility staff had not provided 

him with appropriate care, which caused him to deteriorate. The P&A investigated. The client 

had an order that relieved his aunt of guardianship responsibilities but also required him to 

remain in a specific facility indefinitely. The P&A requested and obtained, an amended court 

order, which allowed the client to live in a least restrictive setting, appropriate to his needs as 

determined by his treating professionals. The client was moved to a better CRCF and eventually, 

to a less restrictive setting. The P&A successfully advocated for the client’s re-adjudication of 

incapacity, a determination that the client had resolved to win. The client chose where he wanted 

to live. 

VERMONT – discharge planning

The P&A worked with a client who was involuntarily admitted to the Brattleboro Retreat 

facility, for a forensic evaluation. After his evaluation, the facility held the client, after obtaining 

a 90-day Order of Hospitalization and informed the P&A that their client “didn't really need to 

be in the hospital.” The P&A investigated and found that the client had no discharge plan. The 

P&A worked with the client's social worker who stated; the client’s legal status was placed under 

the Department of Mental Health, which was responsible for his discharge plan. The 

development of that plan was related to, recent psychosocial evaluation that recommended 24/7 

supervision for the client. The P&A investigated the discharge plan delay, and substantiated 

that, the client did not require hospitalization, and successfully advocated for the client to receive 

an appropriate discharge plan. 

WYOMING – environmental safety

In 2011, the P&A staff investigated conditions at Wyoming State Hospital (WSH), and identified 

several unsafe conditions in the facility, e.g., mold, dead rodents, asbestos, and impediments to 

safe fire evacuation, at this facility. In FY 2012, the P&A successfully advocated for, closure of 

two units at the WSH and the relocation of all patients, previously housed in those units, to more 

environmentally appropriate facilities. 

3. Rights Complaints 

Number and types of individual rights complaints closed per FY included: 

70 
FY 2011 FY 2012

Total Rights Violation Cases Investigated and Closed 7,086 7,483

By Complaint Type

Guardianship 367 407

Advanced directive problems 140 151

Failure to provide confidentiality 67 66

[See, Appendix, Tables 7a and 7b] 

 

Case Examples from FY 2011 

KENTUCKY – guardianship & discharge planning

A state hospital female resident, requested P&A assistance with discharge planning and 

placement in the community. The P&A intervened, investigated, and found that a year earlier 

the state appointed an emergency guardian for their client. While in the guardian’s care, the 

client was placed in three personal care homes and two psychiatric hospitals, located in different 

counties. With P&A staff help, the client filed a court petition to either, dissolve the emergency 

guardianship or to appoint her son as the new guardian. The court ordered the client’s 

emergency guardian to ensure she was discharged from the state hospital within seven days and 

to assist with her placement into the community. Subsequently, P&A staff notified the guardian 

of their intent to inform the judge of the delay in executing the court’s order. This resulted in the 

guardian's permission to the client's discharge and placement with her son. The client's request 

for an apartment under the Olmstead Housing assistance was approved. At the client’s final 

hearing, the court restored her rights and dissolved her emergency guardianship order. 

MISSOURI - guardianship

A 21-year-old man requested P&A assistance because his public administrator guardian did not 

provide him with warm clothing and placed him on phone restrictions. A P&A advocate 

contacted the guardian who stated; the young man was provided clothes and other monies, 

interviewed the residence facility staff who refuted the guardian’s statement, and substantiated 

the information provided by the facility staff. When questioned by the advocate, the guardian 

insisted, the client must buy clothes from his $30 monthly allowance and phone restrictions were 

necessary behavior modifications. When the guardian informed the client, he could not have a 

pass to visit his family at Christmas; the client expressed his anger and was moved by the 

guardian. The advocate intervened and spoke with the new residential facility staff. They 

granted the client a Christmas pass and provided him with warm clothing. The guardian 

eventually allowed the client one daily phone call. 

Case Examples from FY 2012 

COLORADO – rights violation

A 39-year-old Native American, with a history of placements in mental health treatment 

facilities, requested P&A assistance with discharge from the state hospital. The hospital 

provided the client with only one discharge option – placement in a locked nursing home that 

had no available beds. For several years, the client remained in this “holding pattern.” P&A 

staff investigated, conducted a thorough record review, attended treatment planning meetings, 

consulted extensively with the facility’s treatment team, and worked to obtain their client 

71 
culturally-competent services. The client’s treatment team did not support her request to live in 

the community with appropriate supports. P&A staff met with the hospital superintendent and 

successfully advocated for the client’s transfer to a recovery-peer oriented treatment team. P&A 

intervention also provided the client with more independence and time away from her unit. 

MAINE – rights violation (recreational activities)

During a P&A monitoring visit to a community psychiatric hospital, several adolescent patients 

complained they had no access to outdoor recreation (they spent their days indoors) – a violation 

of state policy. After several informal and unsuccessful meetings to resolve the presenting issues 

with the facility’s administrators, P&A staff filed a complaint with the state about the hospital’s 

regulatory violations. This P&A action resulted in the hospital agreeing to develop a secure 

recreational area for adolescents. 

4. Death Investigations 

The PAIMI Act authorized state P&A systems to investigate incidents of abuse, neglect, and 

deaths that occur in public and private care and treatment facilities on behalf of eligible 

individuals [at 42 U.S.C. 10802 (1), (3), (4), and (5)]. Most states had no mandatory reporting 

statutes, central registries or other statewide systems to capture incidents of restraint, seclusion, 

serious injuries and/or fatalities. Despite state data collection limitations, the state P&A systems 

monitored and investigated the use of restraint and seclusion in residential care and treatment 

facilities, especially incidents involving serious injury or death. States with mandatory reporting 

requirements and central registries often send all state death reports to the P&A system, whose 

staff must then review the information to determine those incidents that require an investigation. 

Deaths reported and investigated by state P&A systems included:

Deaths Reported FY 2011 FY 2012

Source of Report

States 2,475 2,636 

Centers for Medicare & Medicaid Services (CMS) 7 4 

Other 96 138 

Deaths Reported Total 2578 2778

Deaths Investigated FY 2011 FY 2012

By incident type

Seclusion (S) 3 40

Restraints (R) 16 14

Non S or R related 290 469

Deaths Investigated Total 309 523

[See, Appendix, Table 7c.] 

Case Examples from FY 2011 

COLORADO – restraint

The P&A investigated a death at the Colorado Mental Health Institute at Pueblo (CMHI – P). 

After placing a resident in five-point restraints in a prone position, facility staff did not monitor 

his breathing. The staff was unable to release the patient’s leather restraint straps, turn him on 

his back and initiate cardio pulmonary resuscitation before the patient died. After the incident, 

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CMHI – P implemented systemic changes, e.g., the use of prone restraints was prohibited, the 

inclusion of scissors in restraint bags, and continuous face-to-face monitoring of all residents 

placed in restraints. 

NEW JERSEY – medical neglect

A 62‐year‐old Greystone Park Psychiatric Hospital resident died while sitting in the hallway 

floor next to her unit’s medication room. The P&A investigative findings noted discrepancies 

between the unit’s surveillance videotape and hospital staffs’ documentation of the incident. For 

example, the video showed the only physical contact between the patient and unit staff occurred 

when a Licensed Practitioner Nurse (LPN) attempted to arouse the patient with a kick. The LPN 

notified two Registered Nurses (RN) who assessed the patient’s condition as motionless and 

unresponsive, but did administer cardio pulmonary resuscitation. The P&A investigation 

substantiated the staffs’ neglect before referring its findings to the hospital’s nursing 

administration and employee relations for review and appropriate corrective action. 

TENNESSEE – prone restraint

An inmate died after he was placed in prone restraints by Correction Officers (CO) under 

observation of a nurse. The CO did not respond when the inmate complained of his inability to 

breathe. The inmate stopped breathing when the officers finally turned him on his back. 

Resuscitation efforts were unsuccessful. Subsequently, the coroner ruled the death a homicide. 

The P&A investigated and substantiated that the inappropriate use of restraint by the CO and 

possible failure by the RN to recognize potential drug interactions. The P&A provided the 

prison administration with the following recommendations: ensure that equipment and outside 

lighting are maintained nightly; develop and implement a medication review policy (i.e., for 

possible interactions, any risks associated with the use of prone restraint); require medical 

treatment when prisoner complains or exhibits signs of respiratory distress; and, train all prison 

staff involved in this incident on the risks of Sudden In-Custody Death Syndrome. The P&A 

monitored the facility’s compliance with these recommendations.

Case Examples from FY 2012 

NEW JERSEY - suicide 

This P&A reviewed the state Department of Human Services (DHS), death investigation report of 

a 28‐year‐old, Trenton Psychiatric Hospital (TPH) patient who completed suicide while under 

staff supervision. The P&A conducted a secondary death investigation and noted discrepancies in 

DHS’ findings. For example, the patient’s direct care worker, who was assigned to supervise him 

every 15 minutes, reported that the required patient checks were performed. In fact, the worker 

was eating and watching television when the patient died. During his six‐month hospitalization at 

TPH, the patient attempted suicide, eloped repeatedly, was moved from unit to unit, and received 

little or no treatment. The P&A reported its findings, and several other TPH incidents that 

appeared to be a pattern of neglectful practices to the U.S. Department of Justice, Civil Rights 

Division, and the Centers for Medicare and Medicaid Services.

WISCONSIN – restraints & seclusion

Seven months after stopping his medications, a man was placed in a state psychiatric institution. 

Shortly after admission, he was restrained several times for attempting to leave his unit (by 

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rushing towards the door) and often spent his nights in a seclusion room. Following an incident, 

facility staff forced him to the floor, placed him in a "burrito wrap" body restraint, transported 

him to the unit’s seclusion room where he was left in a prone (face down) position. For several 

hours, staff checked his condition by observing him from the window of the locked seclusion 

room. One staff member entered the patient’s room, turned him over and noticed his skin was 

blue (due to a lack of oxygen). Despite staff efforts to resuscitate him, the patient died. The 

P&A investigated, i.e., reviewed the hospital’s incident reports, peer review records, etc. The 

medical examiner attributed the patient’s death to the prone restraint. The state Division of 

Quality Assurance also investigated the incident. The hospital was cited by the state and federal 

government for inadequate care and monitoring of vital systems during restraint interventions. 

The P&A met with the hospital’s administrative, clinical, and security staff and advocated that 

the hospital prohibit staff use of prone restraint, prone transfers and “burrito wrap” holds. 

P&A’s intervention resulted in systemic changes in the facility, e.g., the removal of the "burrito 

wrap" from all units and limited use of prone transfers to emergencies.

5. Intervention Strategies 

The P&A systems are authorized by the PAIMI Act [at 42 U.S.C. 10805 (a) (1) (C)] to pursue 

administrative, legal, and other remedies to ensure protection for individuals with mental illness. 

An individual’s initial complaint may involve multiple issues and P&A systems often use several 

strategies to resolve them. The total strategies used often exceeded the number of complaints 

investigated and closed in a FY, as clients’ initial complaints frequently include multiple issues 

and various strategies are used to resolve them.

 FY 2011 FY 2012 

By Type

Short term assistance 6,668 6,331

Abuse & Neglect Investigations 2,395 2,162

Technical assistance 3,035 2,659

Administrative Remedies 374 737

Negotiation/Mediation 1,740 1,599

Legal 333 287

Total Strategies Used 14,545 13,775

[See, Appendix Table 8] 

Case Examples from FY 2011 

ARIZONA – technical assistance/administrative hearing 

A guardian was provided technical assistance after a PAIMI-eligible received a notice of action 

to terminate a supportive behavioral health housing placement. No alternative housing 

placement was provided and the individual faced possible homelessness. With P&A assistance, 

the guardian successfully advocated for the individual and learned how to file an appeal. P&A 

intervention resulted in the individual’s continued placement in supportive housing. 

CALIFORNIA – short-term assistance/investigation 

The P&A helped a PAIMI-eligible individual with multiple disabilities (visual impairments, HIV 

positive) who complained of “squalid” conditions in his room and board facility. The facility did 

74 
not provide daily meals or any additional domestic services the individual required. The P&A 

investigated the service providers and helped their client file an adult protective services (APS) 

complaint. APS substantiated the client’s allegations. The client moved to a better boarding 

situation. P&A intervention alerted APS to neglectful service providers and the improved the 

living conditions of their client. 

Case Examples from FY 2012

NEW YORK – abuse & neglect investigations

A PAIMI eligible Five Points Correctional (FPC) facility inmate requested P&A assistance. 

The NYS inmate was placed on FPC’s Special Housing Unit managed by the NYS Office of 

Mental Health (OMH). OMH dropped the inmate from the unit’s caseload and refused to

provide him with a requested psychiatric evaluation. The P&A investigated OMH’s failure 

to provide psychiatric treatment (the inmate has had a diagnosis of paranoid schizophrenia). 

The client participated in the Community Orientation and Re-Entry Program (a discharge 

planning program for inmates with serious mental illness). OMH omitted this information 

from the inmate’s current mental health records. The P&A’s investigative findings were 

sent to the OMH Risk Management Director. P&A involvement resulted in the inmate’s 

placement on the OMH caseload, where he was evaluated by a nurse practitioner and 

prescribed psychiatric medication. This P&A investigation insured that prisoners received the 

mental health services mandated by state law.

OHIO – negotiation, short-term assistance

When the P&A was notified that a nursing home closing might leave 33 PAIMI-eligible 

residents without services, its staff visited the facility residents, determined their preferred living 

arrangements and then helped them obtain appropriate placements. P&A intervention resulted in 

the successful transfer of the 33 residents, to community homes of their choice with appropriate 

support services. 

C. Class Action Litigation

To ensure compliance with federal or state laws and regulations and when immediate action is 

needed to protect a group of individuals, state P&A systems may use class litigation [42 U.S.C. 

10805 (a)(1)(B)]. This type of litigation is the strategy of last resort. This complex strategy 

often takes years to resolve the presenting problem, and requires special staff expertise, resources 

and time. These types of cases generally involve a range of issues that impact the lives of 

individuals or groups of individuals with mental illness and other disabilities and their families. 

Class action activities reported by the P&A systems on behalf of PAIMI-eligible individuals 

included: 

 FY 2011 FY 2012

Class Actions Filed 61 57

Individuals Impacted 3,194,230 3,581,553

[See, Appendix, Table 9] 

75 
Case Example from FY 2011 & 2012 

CALIFORNIA – recovery

In November 15, 2010 (FY 2011), the District Court for the Eastern District of California 

approved an interim agreement that required Sacramento County to hire an expert to evaluate its 

adult outpatient mental health services and make recommendations for a more recovery-oriented 

model. In May 2010, the P&A and the two private legal entities jointly filed this legal action and 

alleged; the county’s plan to close outpatient mental health clinics that served approximately 

5,000 individuals, violated the integration mandate of the Americans with Disabilities Act 

(ADA) and state law because it placed thousands of people with mental health needs at risk of 

unnecessary institutionalization. The U.S. Department of Justice filed a Statement of Interest in 

support of plaintiffs’ request that the court stop the county from proceeding with its plans to 

drastically change the mental health service system. In July 2010, the plaintiff’s request was 

granted. This prevented the county from ending contracts with existing non-profit mental health 

providers and opening its own clinics staff with county employees. On January 24, 2012, the 

county signed a Consent Decree. The Court ordered the county to develop a plan to provide a 

continuum of care through the county-operated and county-funded adult outpatient mental health 

system and to consolidate the two county outpatient clinics. [See, Napper et al v. County of 

Sacramento, et al Case 2:10-cv-0871119-JAM-EFP Document 80, Filed 07/01/10]. 

PENNSYLVANIA – right to treatment

The P&A settled a legal action filed on behalf of individuals detained or sentenced to serve time 

in the city of Philadelphia's jails. The lawsuit alleged that overcrowded facilities violated the 

Constitution. The P&A focused on the needs of individuals with serious mental illness 

incarcerated in these overcrowded institutions. Since this case was filed, the city’s jail 

population and the need to place more than one inmate in a cell (triple-celled) were reduced 

substantially. Under the settlement, which benefitted prisoners with mental illness, the city of 

Philadelphia agreed: 1) not to triple-cell prisoners with mental illness without psychiatric 

evaluations; 2) not to allow triple-celling of such individuals for extended time periods; and 3) to 

assure prisoners with mental illness do not miss therapeutic activities during lockdowns due to 

staff shortage, if there are no security issues. 

SOUTH CAROLINA – right to treatment

This P&A represented inmates with serious mental illness in the custody of the South Carolina 

Department of Corrections (SCDOC). While incarcerated, these inmates did not receive 

minimally adequate mental health care or treatment. The P&A and the inmates were represented 

by, pro bono, private counsel. The trial was held in 2012. P&A intervention will impact 2,400 

inmates with SMI in SCDOC custody (T. R. Protection & Advocacy for People with Disabilities, 

Inc. et al. v. South Carolina Department of Corrections, et al). 

D. Group Advocacy 

The majority of P&A systems advocated on behalf of groups of PAIMI-eligible individuals. 

These types of activities were not directed toward individuals, but for the resolution of a range of 

systemic issues impacted specific groups or larger populations throughout a state. Some 

systemic advocacy activities included legal actions to protect the rights, health and safety of 

vulnerable facility residents (see, C. Class Action). Sometimes individual complaints resulted in 

76 
group advocacy. Generally, P&A non-case directed advocacy activities focused on 

implementing changes in administrative policy, procedures, or practices in state agencies, 

residential treatment facilities and other service providers.

FY 2011 FY 2012

Non-Litigation Advocacy 

Number of events 442 368 

Total Number of Individuals Impacted 19,018,946 14,895,684

Policy Change FY 2011 FY 2012

Number of events 626 307

Total Number of Individuals Impacted 16,300,029 14,097,977

[See, Appendix Table 9] 

 

Case Examples from FY 2011 

KANSAS - youths

During a monitoring visit at a private psychiatric hospital, the P&A staff found the facility’s 

restraint and seclusion protocols used by its adolescent treatment programs was not consistent 

with state and federal requirements, e.g., hospital protocols restricted patients to their rooms 

(seclusion) for certain behaviors. The P&A notified the facility of these violations and requested 

immediate suspension of these program practices. The hospital administrators met with the P&A 

staff, acknowledged their facility practices constituted seclusion and restraint, and immediately 

discontinued their use in the adolescent treatment programs. 

MICHIGAN – investigation, rights protection

During a monitoring visit of a state psychiatric institution, the P&A staff learned; facility staff 

conducted unauthorized regular searches of all facility residents and their personal property 

without probable cause. State law allowed searches when staff had reason to believe a resident 

may have contraband or when a resident returned to the hospital following a leave of absence. 

The P&A filed a complaint that substantiated these illegal searches. The state hospital 

immediately stopped the searches. P&A group advocacy affected the rights of the hospital’s 280 

residents.

UTAH – state prisons

The P&A collaborated with a coalition of service providers and state prison officials on behalf 

of individuals with mental illness released from prison without access to mental health services. 

While incarcerated, these individuals were unable to apply for or be reinstated to receive public 

benefits. The P&A advocated that the discharge plans of individuals include assistance with 

applying for benefits, at least 30-days before their release from prison.

Case Examples from FY 2012 

NEBRASKA – facility monitoring 

A P&A case advocate conducted bi-weekly visits to the state’s only remaining state psychiatric 

hospital - the Lincoln Regional Center (LRC). During these visits, the advocate noted hospital’s 

77 
conditions (i.e., safety, cleanliness, security, etc.), reviewed records, conducted intakes, met with 

and provided information to residents (i.e., patient grievance procedures, etc.). The advocate 

raised concerns to the hospital administrator and participated in the hospital’s Women’s Council 

meetings.

NEW YORK – best practice guidelines 

The P&A addressed issues experienced by parents with mental illness, whose children are 

placed in state custody (e.g., child welfare, etc.). The P&A worked with a coalition of

attorneys, advocates, and mental health professionals to improve how the New York City 

Administration Children’s Services (ACS) worked with parents with mental health 

disabilities. In August 2011, the P&A participated on the Mental Health Subcommittee of the 

Adoption and Safe Families Act (ASFA) Coalition that provided a forum for discussion of 

issues from the perspectives of mental health services professionals, disability rights 

advocates and attorneys representing parents and children in the child welfare system. The 

coalition worked to develop guidelines for ACS caseworkers with parents with mental health 

disabilities whose children were in the city’s legal custody. The coalition proposed “best 

practice principles” for guiding caseworker training and manual development. 

RHODE ISLAND – state hospital residents 

Despite repeated attempts, the state hospital’s Internal Investigation Unit (IIU) was unable to 

substantiate allegations that patients were abused when restrained. The P&A advocated and the 

hospital administration agreed to install a camera in the restraint room on one hospital unit. The 

P&A advocated for hospital policies that protected the residents’ rights to informed consent, 

privacy and confidentiality. P&A intervention resulted in a decrease in restraint-related abuse 

complaints. The P&A continued to advocate for hospital policy changes. For most of FY 2011, 

the restraint room camera was inoperable. In FY 2012, P&A staff monitored the camera’s status, 

scheduled regular meetings with state officials, and continued its efforts to further advocate and 

protect hospital patients’ rights until the unit’s camera was repaired.

WASHINGTON – mental health competency

For several years, the P&A successfully encouraged state actions to resolve jail competency 

evaluation delays. As a result, the state passed a new law that improves “the timeliness, 

efficiency, and accountability of forensic resource utilization associated with competency to 

stand trial.” It included performance targets for state hospitals to complete their competency 

evaluation/services. For example, seven days for admission to a state hospital for evaluation, 

treatment, or civil conversion; seven days for completion of an evaluation and report for a 

defendant in jail; and 21 days for completion of an evaluation and report for a defendant in the 

community who makes reasonable efforts to cooperate with the evaluation. These performance 

targets run from the date the state hospital receives the referral, charging documents, discovery, 

and criminal history information and do not create any new entitlement or cause of action related 

to the timeliness of competency services.

E. Education and Training Activities

Each state P&A system received requests for information and referral services from its 

constituents via telephone, e-mail, letter, face-to-face, and walk-in visits. The systems also 

provided information by conducting public education, training, and activities. Many state 

78 
PAIMI Programs met with and provided civil rights informational training to their state 

legislators, consumers, stakeholders, and advocacy groups. Other P&A systems conducted 

mental health law classes for attorneys, graduate students, current and former recipients of 

mental health services, and mental health service professionals. P&A system provided 

information to the public by various means, e.g., the media (newspapers, radio/television public 

service announcements), agency newsletters, websites, publications, investigative reports, and 

list serves. Some P&A systems within sparsely populated states or with large rural populations 

used technology to provide information through webcams, videoconferences, teleconferences, 

webinars, Facebook, and Skype. PAIMI program public education, training, and awareness 

activities included:

Educational or Training Activities

 FY 2011 FY 2012

Information and Referral Requests 40,170 35,785

Public Awareness Events 2, 123 2,340

Public Awareness Attendees 3,878,922 2,970,549

Educational Trainings 2,006 1,922

Total Trained 75,815 142,224

[See, Appendix, Table 10] 

 

Example from FY 2011 

MAINE 

After a local television station presented a PAIMI Advisory Council (PAC) member with a 

prestigious award, she asked the station managers to attend a listening session conducted by 

individuals involved in the mental health field. Her goals were to educate the station’s 

personnel, to sensitize the reporters to the negative public attitudes and other issues experienced 

by individuals with mental illness and their family members, and to encourage the promotion of 

public awareness and community integration by station personnel. The PAC member invited 

representatives from the P&A, National Alliance on Mental Illness (NAMI-Maine), and the state 

mental health authority to the meeting, which included robust discussions. TV station staff 

eagerly received the information and hopefully future reporting will reflect efforts to reduce 

negative public attitudes. 

Example from FY 2012 

MASSACHUSETTS

For several years, Fenway Park, the Red Sox’ home stadium, underwent extensive renovations. 

The P&A was involved in this process. For example, in FY 2011, it continued to provide 

guidance and feedback on the stadium’s physical, architectural, visual and communication access 

issues and etiquette tips on how to interact with and accommodate fans with mental health and 

other disabilities. The P&A trained the Boston Red Sox staff on Title III of the Americans with 

Disabilities Act (ADA), specifically the legal requirements applicable to public places and 

reasonable accommodations for Red Sox fans with disabilities. Over 400 Red Sox personnel, 

e.g., the ushers, ticket takers and security guards that interact with the 76,000 Red Sox game 

fans, attended the P&A training. The P&A continues to work with the Boston Red Sox to ensure 

79 
access for people with disabilities.

F. Accomplishments, Impediments, and Unmet Advocacy Needs

1. Accomplishments

P&A system intervention improved the quality of life for individuals with mental illness and 

resulted in systemic changes. Examples of these accomplishments included:

MAJOR ACCOMPLISHMENTS 

Example from FY 2011 

COLORADO

This P&A conducted 53 investigations of incidents of abuse, neglect and rights violations on 

behalf of PAIMI-eligible individuals in detention and state correctional facilities. The clients 

served were detained in jails in the counties of Adams, Boulder, Denver, Huerfano, Jefferson and 

Summit, as well as, several Colorado Department of Corrections operated facilities. The P&A 

also investigated incidents and advocated for residents of Colorado’s two mental health 

institutes, two private hospitals, two Department of Youth correctional facilities, three nursing 

homes and two residential facilities for children. 

GUAM

The P&A focused on systemic change in how services were provided to minors diagnosed with 

significant emotional impairments. The P&A, Guam Superior Court and legislature ensured, the 

island’s system of care provider ('Fama-gu-on'ta) develop and provide services for minors, 

especially those placed in residential treatment facilities. P&A efforts resulted in the availability 

of more island residential mental health treatment services and the subsequent return home of 

minors previously treated off island. 

MICHIGAN

The P&A reached a settlement of the Michigan Protection and Advocacy Services v. Caruso 

(treatment of inmates with mental illness) case that increased state identification of inmates with 

serious mental illness (from 8 to approximately 20 percent); provided training to more than 9,000 

correctional facility staff (i.e., how to identify mental illness) and increased annual funding for 

mental health services. P&A intervention facilitated the processing of inmates request for, and 

access to, mental health services. 

VIRGINIA

The P&A conducted a systemic investigation focused on identifying patients in state-operated, 

high-security forensic facilities, who were deemed clinically appropriate for a less restrictive 

placement, but never transferred. The P&A used the state’s complaint system and obtained a 

favorable decision from the Virginia Human Rights Committee. The decision required the 

Department of Behavioral Health and Disability Services to develop and implement a plan that 

facilitated the timely transfer of forensic inmates. The P&A monitored implementation of the 

plans. 

80 
Example from FY 2012 

TENNESSEE 

The P&A and represntatives from the Tennessee Department of Mental Health and Substance 

Abuse Services met to dicuss issues related to the well-being of individuals with mental health 

disabilities. This meeting resulted in the signing of a Memorandum of Understanding (MOU). 

The MOU delineates the areas of collaboration between the two entities, i.e., cross-training 

opportunities, joint program initiatives, information sharing, identification of trends and 

intervention strategy planning. 

2. Impediments

Example from FY 2011 

GEORGIA 

The P&A identified; the majority of Georgians with mental health and other disabilities residing 

in state institutions were racial minorities. The P&A focused on the state’s discriminatory 

practice of placing those individuals in congregated and segregated settings, far from any diverse 

racial communities. 

IDAHO 

This P&A reported an increase in challenges to its congressionally mandated access authority as 

a major external impediment. The challenges to P&A access authority to records, facilities and 

individuals drain this minimum allotment, grantee’s resources and impede timely investigation of 

incidents of abuse and neglect, especially when such acts result in serious injury or death to 

Idahoans placed in public and private residential care and treatment facilities. 

NEBRASKA

Insufficient resources impeded this P&A system’s ability to conduct regular and effective 

monitoring of all community-based, residential and treatment facilities that serve Nebraskans 

with mental illness. Nebraska is a large state with a significant number of isolated, congregate 

facilities located in small sparsely populated frontier and rural communities.

Resource limitations affected the P&A’s ability to hire, train new staff, and provide the resources 

needed to visit these facilities.

SOUTH CAROLINA

Budget cuts negatively impacted mental health service delivery in South Carolina’s departments 

of mental health and corrections, as well as county jails. 

TEXAS

The P&A experienced access authority challenges by the Texas Open Government Act (TOGA). 

TOGA provides an entity, the means to protect information from disclosure by requesting an 

opinion from the Texas Attorney General (AG) on whether the information falls under the act’s 

disclosure exceptions. The AG’s Open Records Division (ORD) received regular briefings from 

P&A attorneys on their access authority, which preempts inconsistent state law provisions. 

TOGA increased P&A’s expenditure of considerable resources to defend its congressional 

81 
mandated access authority. The ORD attorneys' rulings on P&A access authority were often in 

favor of the other party. Subsequently, the P&A had to challenge the ORD ruling in federal 

court. 

Example from FY 2012 

ARIZONA

During FY 2010, the Arizona Department of Behavioral Health Services (BHS) revised its death 

reporting process, which affected the reporting of behavioral health system facility deaths. 

Information previously made available to the P&A was now included in the “Quality of Care 

Concern Process” – a peer review. Data compiled by the BHS was now protected by the peer 

review process and no longer available. In FY 2012, the State of Arizona changed its reporting 

requirements for deaths of persons with mental illness. The state also eliminated rules that 

required some licensed facilities to report certain types of incidents and accidents from the rules, 

pending approval by the Arizona Office of Behavioral Health Licensing. The revised state 

protocols impacted the number of incidents involving seclusion, restraint, any resulting serious 

injuries, and deaths reported by behavioral health services providers. 

NORTH DAKOTA

As the North Dakota economy improved, due to the oil industry the state’s infrastructure was 

impacted. The state’s transportation (roads), housing (shortages and skyrocketing cost), 

educational (teacher shortages, overcrowded schools), medical (shortages of professionals), and 

mental health (acute shortage of psychiatrists, psychologists, mental health case managers, etc.) 

systems were adversely impacted. The influx of oil industry workers has made it difficult for 

P&A staff to serve North Dakotans with mental health and other disabilities who reside in the 

more rural, remote areas in this large, sparsely populated frontier state. For example, P&A staff 

had difficulty securing a hotel room at a reasonable rate in or near “oil country”. The P&A’s 

Williston office, in ‘the heart of the oil boom’, is located in an office building currently for sale. 

When its lease expired in June 2013, the P&A stated it would be difficult to find affordable, 

accessible office space in that community.

3. Outreach/Advocacy Services to Unserved and Underserved Populations 

The P&A systems reached out to underserved and unserved populations, such as rural, homeless, 

ethnic and racial minorities. The following vignettes describe those efforts: 

Example FY 2011 

HAWAII

The P&A focused its outreach activities on two minority communities – Filipinos and 

Micronesians – the state’s fastest growing immigrant populations. 

IDAHO

P&A outreach activities focused on the Hispanic community. For example, its staff participated 

in the Mujeres Unidas de Idaho annual conference and attended its monthly luncheons. They 

also collaborated with Catholic Charities, an organization with close ties to the Hispanic 

community. 

82 
Example from FY 2012 

WYOMING

Although Wyoming has few ethnic and racial minorities (13 – 14 percent), the P&A continued 

outreach efforts to recruit members from the Hispanic, African American, and American Indian 

(Shoshone and Arapahoe) communities to serve on its governing board and the PAIMI Advisory 

Council. In FY 2012, the P&A updated its program materials and their accessibility on its 

website. For example, information was provided in Braille and Shoshone, Arapahoe and 

Spanish. The P&A used mass media to disseminate information to all Wyomingites, including 

the unserved and underserved. 

GOVERNANCE 

1. The Governing Authority

The DD Act of 1975 [42 U.S.C. 15043 (a), amended in 2000], which created the state P&A 

systems, mandated that private, non-profit, entities have a multimember governing authority 

(board) to oversee the system [42 U.S.C. 15044]. The DD Act required: the governing boards be 

selected according to the policies and procedures of the system; that board members include 

individuals who broadly represent or are knowledgeable of the needs of individuals served by the 

system; that the majority of board members include persons with disabilities who are current or 

former recipients of disability services, their family members, guardians, authorized 

representatives and advocates; that the system set term limits to ensure rotating membership on 

the board; and that board vacancies be filled within 60-days [respectively, at 42 U.S.C. 15044 (a) 

(1) (A), (B) (i), (ii) and (C) (3) and (4)]. There were 47 private non-profit P&A systems. Stateoperated P&A systems may, but are not required, to have a governing authority. 

Consistent with the DD Act, the PAIMI Act [42 U.S.C. 10805(c)] also required that private P&A 

systems have a multimember governing authority (board) [42 U.S.C. 10805(c) (1) (A)]. Each 

board was responsible for the planning, designing, implementing and functioning of its system 

[42 U.S.C. 10805(c) (2) (A)]. The board must work jointly with its PAIMI Advisory Council 

(PAC) [42 U.S.C. 10805(c) (2) (B)] and establish policies and procedures for the selection of its 

members [42 U.S.C. 10805(c) (1) (B)]. The DD Act included provisions for the Board terms of 

appointment, size, and composition. The PAIMI Act and Rules also require the Advisory 

Council Chair, who must be a current or former recipient (C/FR) of mental health services or a 

family member, sit on the governing board of private, non-profit P&A systems. The board must 

make continuing efforts to ensure its members include racial and ethnic minorities [respectively 

at, 42 U.S.C. 10805(a) (6) (C) and 42 CFR 51.22(b) and (c)]. 

The PAIMI Advisory Council 

Each state P&A system is mandated to establish a PAIMI Advisory Council (PAC) [PAIMI Act 

at 42 U.S.C. 10805(a) (6) (C)] to advise the system on policies and priorities to be carried out in 

protecting and advocating for the rights of individuals with mental illness [at 42 U.S.C. 10805 (a) 

(6) (A)]. The composition of the PAC is also mandated [PAIMI Act at 42 U.S.C. 10805(a) (6) 

(B)]. The Advisory Council chair must be a current or former mental health recipient or a family 

member of such an individual [42 U.S.C. 10805(a) (6) (C) and the PAIMI Rules at 42 CFR at 

51.23(b) (2)]. 

83 
Each PAIMI Advisory Council is required to provide independent advice and recommendations 

to its state P&A system, to work jointly with the governing authority in the development of 

policies and priorities, and to submit a section of the system’s annual report [PAIMI Rules at 42 

CFR 51.23 (a) (1) - (3)]. Council terms of appointment must be staggered, of reasonable 

duration and at least 60 percent of its members must be current or former recipients of mental 

health services or their family members, meet at least three times a year, include ethnic and racial 

minorities, and receive information related to the system’s budget, staff, current program 

policies, priorities and performance outcomes [PAIMI Rules at 42 CFR 51.23(b) (2), (3) and (c)]. 

The PAC, whose size varied per state P&A system, is mandated to provide the governing board 

with advice and recommendations on the annual PAIMI programmatic activities and priorities to 

be funded in a FY. The PAC is expected to convene a minimum of three (3) meetings each 

calendar year and set staggered terms for its members [42 CFR at 51.23 (b)(3)]. The PAIMI Act 

requires the Chair of the PAIMI PAC, sit on the governing board of private, non-profit state 

P&A systems [42 U.S.C. 10805 (a) (6) (A), 42 CFR at 51.22 (b) (3)]. However, any advisory 

council member may serve on the governing board [42 CFR at 51.22(d)]. 

By January 1 of each year, each P&A system is required to submit an annual PAIMI Program 

Performance Report (PPR) to the Secretary HHS [42 U.S.C. 10805 (a)(7)]. The Advisory 

Council is also required to submit a section of that annual PPR as mandated by the PAIMI Act 

(42 U.S.C. 10824) and the PAIMI Rules (42 CFR 51.8). 

The council’s report must: 

• Describe its membership and its PAIMI Program activities; 

• Explain its relationship to the P&A governing board in the previous calendar year; 

• Independently assess the P&A system’s PAIMI Program; 

• Include whether the program accomplished its priorities, goals, and objectives for the 

previous FY. 

In addition to attending meetings, PAIMI Advisory Council members participated in numerous 

activities sponsored or endorsed by the PAIMI Program, e.g., attended in-state and out-of-state 

trainings, served on P&A governing board committees, engaged in systemic and legislative 

advocacy; and participated in special projects. 

TRAINING AND TECHNICAL ASSISTANCE

SAMHSA provided training and technical assistance (T/TA) to the state P&A systems through 

an interagency agreement (IAA) administered by the AIDD. AIDD, which oversees the PADD 

Program, is the first federal protection and advocacy program and is the lead on federal P&A 

system for issues pertaining to designation, re-designation, regulations, etc. SAMHSA supports 

the IAA with funds specifically set-aside for T/TA and limited to a maximum of two percent of 

the annual PAIMI Program appropriation. The Rehabilitation Services Administration (RSA), 

within the Office of Special Education and Rehabilitation Services, U.S. Department of 

Education, administers the Protection and Advocacy for Individual Rights (PAIR) Program, the 

Client Assistance Program (CAP), and the Protection and Advocacy for Assistive Technology 

(PAAT) Program. RSA has a separate IAA with AIDD. This consolidation of federal P&A 

84 
program set-aside funds maximizes each agencies limited resources and contributes to a federal 

partnership among the three agencies that fosters cooperation, information sharing, strategic 

planning, coordination and integration of P&A system activities. 

The Training Advocacy and Support Center (TASC) of the National Disability Rights Network 

(NDRN) was the contractor selected by the AIDD to serve the P&A systems. Under the 

contract, TASC is responsible for T/TA various tasks, some general, and others agency specific, 

e.g., the annual PAIMI Advisory Council training. TASC activities under FYS 2011 and 2012 

contract included the following topics: investigation protocols for incidents of abuse and neglect 

cases involving deaths; seclusion and restraint; community integration (Olmstead); Medicaid 

funding; consumer self-advocacy; the role of PAIMI Advisory Councils; access to jails, prisons, 

and juvenile detention facilities; housing; and outreach strategies for unserved and underserved 

populations, i.e., ethnic, racial minorities, urban, rural, prisons, jails, and detention centers. 

TASC also assisted P&A systems prepare legal briefs when their PAIMI Act investigative and 

access authority were challenged. 

Under the IAA, TASC prepared three publications, [TASC Update (monthly), LegalEASE

(monthly) and the P&A News (quarterly)] that were reviewed and edited by SAMHSA, AIDD 

and RSA and approved by AIDD before they were disseminated to the state P&A systems. 

Under the IAA, TASC staff: 

• Maintained a website accessible to the public and a webpage accessible only to the 

federal partners and the state P&A systems; 

• Developed model guidelines, training manuals, and legal advocacy materials, i.e., 

LegalEASE (monthly) and Case Dockets;

• Analyzed public policy; 

• Established relationships with state P&A system staff; 

• Served as liaison to the state P&A system staff;

• Facilitated information exchanges and requests for assistance from the P&A system staff; 

• Subcontracted with national legal organizations, e.g., the Bazelon Center for Mental 

Health Law, the Center for Public Representation, and other legal experts for P&A 

system consultation services; 

• Promoted the use of the Protection & Advocacy Standards which were developed in 

2009; 

• Identified and disseminated samples of model P&A system policies and procedures;

• Developed P&A system self-assessment procedures, a project started in 2009; and 

• Planned and conducted training on current disability, legal, and advocacy issues, e.g., the 

Annual Conference, the P&A executive director and fiscal management training. 

85 
DATA TABLES FOR FISCAL YEAR 2011-12

Table 1 – State PAIMI Allotments 

Table 2 – Client Age and Gender

Table 3 – Client Ethnicity and Race 

Table 4 – Living Arrangements 

Table 5 – Abuse 

Table 6a – Neglect

Table 6b – Neglect

Table 7a – Rights Violations

Table 7b – Rights Violations

Table 7c – Rights Violations

Table 8 – Intervention Strategies

Table 9 – Group Advocacy Strategies 

Table 10 – Public Awareness & Educational Training Activities

86 
Table 1 – State PAIMI Allotments 

2011 

States Federal Award 

FY 2012

Alabama * $451,372

Alaska $429,100

American Indian Consortium $229,900

American Samoa * $229,900

Arizona $633,443

Arkansas $429,100

California $3,134,571

Colorado $429,546

Connecticut * $429,100

Delaware $429,100

District of Columbia $429,100

Florida $1,642,108

Georgia $933,039

Guam $229,900

Hawaii $429,100

Idaho $429,100

Illinois $1,102,843

Indiana * $610,362

Iowa $429,100

Kansas $429,100

Kentucky * $429,100

Louisiana $429,100

Maine $429,100

Maryland $456,215

Massachusetts $521,358

Michigan $941,212

Minnesota $450,085

Mississippi $429,100

Missouri $551,979

Montana $429,100

Nebraska $429,100

Nevada $429,100

New Hampshire $429,100

New Jersey $686,332

New Mexico $429,100

New York * $1,591,215

North Carolina $880,448

North Dakota * $429,100

North Mariana Islands $229,900

Ohio * $1,069,448

Oklahoma $429,100

Oregon $429,100

Pennsylvania $1,099,025

Puerto Rico * $618,294

Rhode Island $429,100

87 
South Carolina $444,614

South Dakota $429,100

Tennessee $595,224

Texas $2,204,946

Utah $429,100

Vermont $429,100

Virgin Islands $229,900

Virginia * $657,158

Washington $562,766

West Virginia $429,100

Wisconsin $510,809

Wyoming $429,100

Total P&A Award $35,513,612

Technical Assistance $724,768

Total P&A Award $36,238,380

2012 

States Federal Award 

FY 2012

Alabama * $451,372

Alaska $429,100

American Indian Consortium $229,900

American Samoa * $229,900

Arizona $633,443

Arkansas $429,100

California $3,134,571

Colorado $429,546

Connecticut * $429,100

Delaware $429,100

District of Columbia $429,100

Florida $1,642,108

Georgia $933,039

Guam $229,900

Hawaii $429,100

Idaho $429,100

Illinois $1,102,843

Indiana * $610,362

Iowa $429,100

Kansas $429,100

Kentucky * $429,100

Louisiana $429,100

Maine $429,100

Maryland $456,215

Massachusetts $521,358

Michigan $941,212

Minnesota $450,085

Mississippi $429,100

Missouri $551,979

Montana $429,100

Nebraska $429,100

88 
Nevada $429,100

New Hampshire $429,100

New Jersey $686,332

New Mexico $429,100

New York * $1,591,215

North Carolina $880,448

North Dakota * $429,100

North Mariana Islands $229,900

Ohio * $1,069,448

Oklahoma $429,100

Oregon $429,100

Pennsylvania $1,099,025

Puerto Rico * $618,294

Rhode Island $429,100

South Carolina $444,614

South Dakota $429,100

Tennessee $595,224

Texas $2,204,946

Utah $429,100

Vermont $429,100

Virgin Islands $229,900

Virginia * $657,158

Washington $562,766

West Virginia $429,100

Wisconsin $510,809

Wyoming $429,100

Total P&A Award $35,513,612

Technical Assistance $724,768

Total P&A Award $36,238,380

89 
Table 2 – Client Age and Gender

2011 

State

Clients 

Served

Age Gender 

0-4 5-12 13-18 19-25 26-64 65+

Unknow

n

Served 

Total Male Female

Alabama* 360 0 18 137 29 165 11 0 360 231 129

Alaska 115 0 0 1 4 105 5 0 115 56 59

American Indian Consortium 33 0 5 17 3 8 0 0 33 23 10

America Samoa* 49 0 2 5 7 33 2 0 49 15 34

Arizona 231 0 4 16 12 194 5 0 231 113 118

Arkansas 90 0 11 30 5 39 5 0 90 52 38

California 1,266 0 20 74 78 947 147 0 1,266 647 619

Colorado 121 0 5 8 14 90 4 0 121 86 35

Connecticut* 96 0 2 5 11 77 1 0 96 61 35

Delaware 194 0 7 24 10 146 7 0 194 89 105

District of Colombia 120 0 0 3 12 95 10 0 120 64 56

Florida 206 0 16 38 12 128 12 0 206 125 81

Georgia 184 0 2 21 18 137 6 0 184 106 78

Guam 31 0 0 8 2 21 0 0 31 14 17

Hawaii 255 2 33 39 12 162 7 0 255 172 83

Idaho 134 0 5 16 11 98 4 0 134 67 67

Illinois 834 1 65 170 64 479 44 11 834 482 352

Indiana* 168 0 3 10 18 131 6 0 168 113 55

Iowa 70 0 6 13 8 41 2 0 70 44 26

Kansas 587 0 42 50 33 443 19 0 587 289 298

Kentucky* 173 0 27 48 15 69 14 0 173 90 83

Louisiana 115 0 11 23 5 74 2 0 115 74 41

Maine 225 0 21 44 11 141 8 0 225 104 121

Maryland 152 0 6 32 22 82 10 0 152 90 62

Massachusetts 138 1 9 19 14 87 8 0 138 81 57

Michigan 140 0 16 28 15 64 17 0 140 94 46

Minnesota 482 4 40 74 52 295 17 0 482 256 226

Mississippi 162 0 28 75 8 48 3 0 162 107 55

Missouri 240 0 2 12 27 192 7 0 240 141 99

Montana 159 0 17 61 11 65 5 0 159 93 66

Nebraska 73 0 0 0 6 59 8 0 73 32 41

Nevada 89 0 4 5 15 64 1 0 89 43 46

New Hampshire 637 0 28 75 44 433 34 23 637 316 321

New Jersey 376 0 7 45 25 256 43 0 376 235 141

New Mexico 169 0 2 20 10 123 14 0 169 103 66

New York* 488 0 86 143 26 217 16 0 488 293 195

North Carolina 323 0 19 68 25 201 10 0 323 207 116

North Dakota* 191 1 39 42 13 87 9 0 191 115 76

North Mariana Islands 26 2 2 1 2 16 3 0 26 13 13

Ohio* 984 3 50 62 67 719 83 0 984 488 496

Oklahoma 879 0 76 84 46 646 27 0 879 464 415

Oregon 82 0 4 2 13 59 4 0 82 43 39

90 
Table 2 – Client Age and Gender

2011 cont.

Pennsylvania 780 13 135 152 73 364 43 0 780 447 333

Puerto Rico* 127 0 19 16 11 78 3 0 127 83 44

Rhode Island 300 0 14 33 29 199 25 0 300 170 130

South Carolina 131 0 7 85 6 31 2 0 131 84 47

South Dakota 170 0 18 27 13 106 6 0 170 91 79

Tennessee 102 0 10 31 13 44 4 0 102 69 33

Texas 1,491 4 190 286 132 815 64 0 1491 903 588

Utah 343 1 18 26 32 252 14 0 343 168 175

Vermont 149 0 0 11 15 115 8 0 149 79 70

Virgin Islands 38 0 21 0 0 11 1 5 38 21 17

Virginia* 158 0 0 11 13 120 14 0 158 102 56

Washington 534 0 12 33 38 357 94 0 534 305 229

West Virginia 74 0 3 8 6 56 1 0 74 47 27

Wisconsin 201 0 13 29 21 136 2 0 201 128 73

Wyoming 75 0 7 6 5 51 6 0 75 49 26

Total 16,492 34 1,323 2,543 1,342 10,440 787 23 16,492 9,442 7,050

Percentages 100% 0% 8% 15% 8% 63% 5% 0% 100% 57% 43%

91 
Table 3 – Client Ethnicity and Race

2011 

State

Clients 

Served

American 

Indian/ 

Alaska Asian

Black/ 

African 

American

Native 

Hawaiian 

or Pacific White/ 

Caucasian

** 

Other

Hispanic/

Latino

Not 

Hispanic/

Latino

Total

Alabama 359 1 2 181 0 172 3 1 358 359

Alaska 114 16 0 7 1 85 5 1 113 114

American Indian Consortium 33 33 0 0 0 0 0 0 33 33

American Samoa 54 0 2 1 49 2 0 0 54 54

Arizona 194 3 2 12 0 177 0 37 157 194

Arkansas 88 1 0 35 0 51 1 2 86 88

California 1,086 20 35 228 9 725 69 180 906 1086

Colorado 93 2 0 12 0 77 2 28 65 93

Connecticut 78 0 2 18 0 58 0 18 60 78

Delaware 172 0 4 65 0 103 0 22 150 172

District of Columbia 120 1 2 93 0 19 5 5 115 120

Florida * 206 3 1 28 0 169 5 18 188 206

Georgia 178 0 3 88 0 82 5 6 172 178

Guam * 31 0 2 0 26 3 0 0 31 31

Hawaii 265 12 36 9 25 102 81 10 255 265

Idaho 134 4 3 1 0 125 1 12 122 134

Illinois * 806 22 18 302 0 424 40 85 721 806

Indiana 167 0 0 38 129 0 0 6 161 167

Iowa * 70 0 0 0 0 68 2 1 69 70

Kansas 562 13 1 54 0 473 21 19 543 562

Kentucky 173 0 0 38 16 117 2 2 171 173

Louisiana * 113 0 1 62 0 49 1 4 109 113

Maine 225 4 1 2 0 197 21 4 221 225

Maryland 152 0 4 88 0 55 5 4 148 152

Massachusetts 123 2 4 26 0 91 0 15 108 123

Michigan 139 3 1 38 0 91 6 1 138 139

Minnesota 471 23 9 102 0 337 0 11 460 471

Mississippi 161 2 0 81 0 78 0 3 158 161

Missouri 238 4 0 73 0 161 0 2 236 238

Montana 158 9 0 0 1 147 1 3 155 158

Nebraska 72 0 1 1 4 65 1 1 71 72

Nevada 76 2 1 15 0 57 1 13 63 76

New Hampshire 620 2 10 8 1 599 0 15 605 620

New Jersey 367 0 3 95 0 269 0 34 333 367

New Mexico 169 0 0 5 0 164 0 90 79 169

New York 440 1 1 130 1 273 34 48 392 440

North Carolina 316 7 6 128 1 174 0 7 309 316

North Dakota 195 29 2 8 1 153 2 4 191 195

North Mariana Islands 30 0 4 0 20 6 0 0 30 30

Ohio 977 3 3 288 0 683 0 17 960 977

Oklahoma 855 89 5 171 1 589 0 24 831 855

Oregon 78 6 0 5 0 67 0 6 72 78

Pennsylvania 732 3 9 191 0 529 0 48 48 0

92 
Table 3 – Client Ethnicity and Race

2011 cont. 

Puerto Rico* 0 0 0 0 0 0 0 127 127 0

Rhode Island 300 3 3 17 0 277 0 300 27 273

SouthCarolina 131 2 0 54 0 75 0 131 3 128

South Dakota 170 31 2 2 2 127 6 160 13 147

Tennessee 102 0 0 31 0 71 0 102 1 101

Texas 1,434 6 4 335 1 1088 0 1442 448 994

Utah 324 4 1 13 0 306 0 331 17 314

Vermont 141 3 2 4 0 132 0 136 4 132

VirginIslands 38 2 2 30 1 3 0 38 2 36

Virginia* 152 0 4 76 0 72 0 6 6 0

Washington 534 16 16 62 0 440 0 534 68 466

West Virginia 74 3 0 8 0 63 0 74 3 71

Wisconsin 193 6 0 53 0 126 8 206 13 193

Wyoming 75 4 0 1 1 69 0 75 5 70

Total 15,686 419 191 3,467 232 10,954 423 13,768 1,509 12,259

93 
Table 4 – Living Arrangements

2011 

State

Clients 

Served

Independe

nt Living

Parental 

or 

Family 

Home

Community 

Residential 

Home for 

Children/ 

Youth 

0-18 yrs

Adult 

Community

Residential 

Home 

NonMedical 

Community 

Child/Youth 

0-18 yrs

Foster 

Care

Nursing 

Facility

Intermediate 

Care

Public & 

Private 

General 

Hospital

Other 

Health 

Facility

Alabama* 360 20 58 4 86 0 4 5 3 0 0

Alaska 115 68 8 7 1 0 0 0 0 0 0

American Indian Consortium 33 5 18 0 0 0 3 0 0 2 0

American Samoa* 49 6 15 2 2 4 0 0 0 5 2

Arizona 231 140 28 0 12 0 2 1 0 3 0

Arkansas 90 13 19 1 11 0 0 2 2 0 0

California 1,265 631 191 5 52 0 1 36 0 18 1

Colorado 121 12 18 0 1 3 0 8 0 2 3

Connecticut* 96 25 10 0 11 0 0 1 1 20 0

Delaware 194 75 38 1 13 0 4 4 0 0 0

District of Columbia 120 17 9 0 1 0 1 7 0 0 0

Florida 206 37 30 0 5 1 4 6 3 0 1

Georgia 184 22 11 1 15 0 0 0 0 1 0

Guam 31 5 11 1 0 0 0 0 0 0 0

Hawaii 255 64 85 29 0 0 4 0 0 0 0

Idaho 134 58 33 1 7 0 0 5 1 0 0

Illinois 834 218 259 2 30 0 0 88 3 18 1

Indiana* 168 12 13 1 5 0 0 0 0 1 0

Iowa 70 21 18 1 3 0 0 6 0 0 0

Kansas 587 347 94 2 17 0 0 52 3 0 0

Kentucky* 173 6 57 14 0 1 6 5 2 0 6

Louisiana 115 14 35 0 2 0 1 9 2 31 0

Maine 225 75 48 0 0 11 0 3 0 2 0

Maryland 152 14 10 3 4 0 0 1 0 1 0

Massachusetts 138 14 27 0 3 0 0 1 0 0 0

Michigan 140 23 41 3 16 0 0 17 0 1 0

Minnesota 482 118 114 12 67 0 33 0 13 1 3

Mississippi 162 14 81 5 7 4 7 0 0 0 0

94 
Table 4 – Living Arrangements

2011 cont.

Missouri 240 57 18 0 21 2 0 34 2 2 1

Montana 159 24 23 1 4 0 3 4 0 0 1

Nebraska 73 9 1 0 32 0 0 1 0 0 0

Nevada 89 40 10 1 0 0 0 0 0 0 0

New Hampshire 637 244 160 7 7 5 0 1 0 4 0

New Jersey 376 32 59 2 6 0 1 5 0 0 0

New Mexico 169 16 11 7 4 0 0 0 0 0 0

New York* 488 149 41 43 25 19 0 0 2 81 1

North Carolina 323 12 37 1 1 26 3 1 0 6 0

North Dakota* 191 50 80 0 3 0 2 4 0 0 0

North Mariana Islands 26 9 15 0 1 0 0 0 0 0 0

Ohio* 984 334 123 19 28 2 0 71 1 24 1

Oklahoma 879 500 247 1 10 0 10 14 0 13 0

Oregon 78 10 7 1 4 0 0 1 0 0 0

Pennsylvania 759 265 195 6 8 48 5 29 2 8 3

Puerto Rico* 128 57 39 3 6 1 2 1 0 1 1

Rhode Island 305 72 86 1 20 0 0 65 0 5 0

South Carolina 145 10 30 0 4 0 5 1 0 0 0

South Dakota 176 21 48 0 2 3 0 2 0 1 0

Tennessee 73 9 41 1 3 0 0 3 0 0 0

Texas 1,390 155 475 16 27 24 40 12 3 6 0

Utah 464 278 62 0 10 0 0 10 0 2 0

Vermont 117 40 0 1 11 0 0 1 1 0 0

Virgin Islands 47 15 19 2 3 0 0 0 0 0 0

Virginia* 143 10 10 7 5 3 0 0 0 0 0

Washington 463 154 39 15 0 0 2 4 0 3 26

West Virginia 80 14 14 0 3 0 0 3 0 0 0

Wisconsin 189 53 44 2 12 1 0 2 0 0 2

Wyoming 33 2 1 1 0 0 0 1 0 0 0

Total 15,954 4,715 3,314 233 631 158 143 527 44 262 53

Percentages 101% 30% 21% 1% 4% 1% 1% 3% 0% 2% 0%

95 
Table 4 – Living Arrangements

2011 

State Psych

Wards

Public & 

Private

Institutional 

Living

Jail 

Detention

State 

Prison Homeless

Federal 

Facility Unknown

Alabama* 3 129 40 5 2 1 0

Alaska 6 3 0 0 18 4 0

American Indian Consortium 2 2 1 0 0 0 0

American Samoa* 2 4 0 5 0 0 2

Arizona 10 14 3 9 8 1 0

Arkansas 0 42 0 0 0 0 0

California 25 192 37 19 55 3 0

Colorado 36 7 10 18 2 1 0

Connecticut* 0 3 19 0 6 0 0

Delaware 44 2 3 7 3 0 0

District of Columbia 18 49 6 0 12 0 0

Florida 2 81 34 0 2 0 0

Georgia 1 118 11 2 2 0 0

Guam 4 9 1 0 0 0 0

Hawaii 65 0 0 2 6 0 0

Idaho 2 12 4 3 8 0 0

Illinois 24 146 17 11 11 3 5

Indiana* 2 89 17 28 0 0 0

Iowa 0 18 2 1 0 0 0

Kansas 26 29 5 0 10 2 0

Kentucky* 14 52 1 0 0 9 0

Louisiana 6 6 9 0 0 0 0

Maine 18 54 4 0 10 0 0

Maryland 3 105 5 0 6 0 0

Massachusetts 0 91 0 1 1 0 0

Michigan 11 17 8 2 1 0 0

96 
Table 4 – Living Arrangements

2011 cont.

Minnesota 22 58 9 12 2 18 0

Mississippi 0 39 2 2 1 0 0

Missouri 9 59 8 19 7 1 0

Montana 0 89 7 3 0 0 0

Nebraska 0 73 0 0 0 0 0

Nevada 0 26 1 3 8 0 0

New Hampshire 0 118 9 13 24 0 45

New Jersey 9 247 14 1 0 0 0

New Mexico 106 7 17 0 1 0 0

New York* 0 73 8 7 28 5 6

North Carolina 0 211 2 21 2 0 0

North Dakota* 3 29 3 8 9 0 0

North Mariana Islands 0 0 1 0 0 0 0

Ohio* 301 105 46 8 12 1 0

Oklahoma 5 20 24 13 22 0 0

Oregon 42 10 0 1 1 1 0

Pennsylvania 18 100 16 38 18 0 0

Puerto Rico* 3 1 7 1 1 4 0

Rhode Island 17 17 7 3 8 4 0

South Carolina 0 27 63 4 1 0 0

South Dakota 5 81 3 8 2 0 0

Tennessee 3 10 3 0 0 0 0

Texas 399 44 166 4 19 0 0

Utah 7 44 31 6 14 0 0

Vermont 27 9 4 14 3 6 0

Virgin Islands 1 2 3 0 2 0 0

Virginia* 3 99 5 1 0 0

Washington 2 114 87 0 16 1 0

West Virginia 0 40 1 4 1 0 0

Wisconsin 16 7 9 34 6 1 0

Wyoming 1 26 1 0 0 0 0

Total 1,323 3,059 794 340 372 66 58

Percentages 8% 19% 5% 2% 2% 0% 0%

97 
Table 5 – Abuse 

2011 

States

 

Number of 

Abuse 

Complaints 

Closed

Inappropriate/Excessive

Medication

Physical

Restraint 

Chemical

Restraint

Mechanical 

Restraint Seclusion 

Alabama* 77 1 13 0 0 1

Alaska 15 2 5 0 1 0

American Indian Consortium 6 0 0 0 0 0

American Samoa* 6 0 0 0 0 0

Arizona 6 3 1 0 0 1

Arkansas 30 0 5 0 2 0

California 125 21 13 1 5 0

Colorado 21 4 1 0 1 1

Connecticut* 43 0 1 0 0 2

Delaware 36 3 3 0 0 0

District of Columbia 33 8 4 3 1 1

Florida 39 0 4 3 1 0

Georgia 74 5 2 4 1 0

Guam 8 1 0 0 0 0

Hawaii 22 2 0 0 1 2

Idaho 12 1 0 1 0 1

Illinois 175 31 16 8 1 5

Indiana* 60 3 10 1 1 1

Iowa 5 0 0 0 2 0

Kansas 45 2 4 0 1 2

Kentucky* 12 0 4 0 0 0

Louisiana 12 0 0 0 0 3

Maine 53 2 11 0 1 2

Maryland 32 0 4 0 0 3

Massachusetts 37 0 1 1 1 0

Michigan 15 0 6 0 2 1

Minnesota 44 0 2 0 1 0

Mississippi 34 1 2 0 0 2

Missouri 78 26 1 0 1 0

Montana 36 0 5 9 1 3

Nebraska 14 0 0 0 0 0

Nevada 9 1 1 0 0 0

New Hampshire 88 11 1 0 2 0

New Jersey 137 29 0 0 4 0

New Mexico 43 2 6 0 0 0

New York* 201 1 0 13 0 0

North Carolina 139 0 1 5 0 2

North Dakota* 44 0 10 0 1 0

North Mariana Islands 1 0 0 0 0 0

Ohio* 209 5 9 2 3 3

98 
Table 5 – Abuse

2011 cont.

Oklahoma 31 2 1 0 0 6

Oregon 17 0 3 0 0 0

Pennsylvania 167 5 19 0 1 1

Puerto Rico* 10 0 0 0 0 0

Rhode Island 6 0 0 0 0 0

South Carolina 86 0 15 0 0 6

South Dakota 26 5 4 1 1 0

Tennessee 26 1 3 1 0 0

Texas 123 7 18 5 0 1

Utah 60 7 9 2 0 2

Vermont 53 2 9 3 5 3

Virgin Islands 2 0 0 0 0 0

Virginia* 40 3 11 0 1 0

Washington 168 21 5 2 1 26

West Virginia 14 0 2 0 0 1

Wisconsin 35 1 1 0 0 5

Wyoming 14 1 2 0 1 0

Total 2,954 220 248 65 45 87

Percentages 100% 7% 8% 2% 2% 3%

Table 5 – Abuse 

2011

 

States

 

 

Involuntary

Failure to 

Provide Mental 

Health 

Medication ECT Treatment

Aversive 

Behavior 

Therapy Sterilization

Alabama* 1 0 0 0 7

Alaska 0 0 0 0 3

American Indian Consortium 0 0 0 0 1

American Samoa* 1 0 0 0 2

Arizona 2 0 3 0 8

Arkansas 0 0 0 0 6

California 10 0 0 0 35

Colorado 2 0 0 0 6

Connecticut* 11 0 0 0 15

Delaware 1 0 0 0 1

District of Columbia 0 0 0 0 0

Florida 1 0 0 0 14

Georgia 0 0 0 0 13

Guam 0 0 0 0 3

99 
Table 5 – Abuse

2011 cont.

Hawaii 2 0 0 0 0

Idaho 1 0 0 0 2

Illinois 14 0 0 0 34

Indiana 0 0 0 0 4

Iowa* 0 1 0 0 4

Kansas 1 0 0 0 18

Kentucky* 0 0 0 0 2

Louisiana 0 0 0 0 11

Maine 3 0 0 0 0

Maryland 0 0 0 0 5

Massachusetts 1 0 0 0 22

Michigan 0 0 0 0 69

Minnesota 1 2 0 0 27

Mississippi 1 0 0 0 2

Missouri 2 0 0 0 27

Montana 2 0 0 0 8

Nebraska 1 0 0 0 4

Nevada 0 0 0 0 2

New Hampshire 2 2 0 0 37

New Jersey 5 0 0 0 8

New Mexico 0 0 0 0 11

New York* 11 0 0 0 8

North Carolina 3 3 4 0 89

North Dakota* 9 0 0 0 6

North Mariana Islands 4 0 0 1 0

Ohio* 8 1 0 0 67

Oklahoma 0 0 0 0 15

Oregon 0 1 0 0 18

Pennsylvania 3 2 2 0 9

Puerto Rico* 0 0 6 3 0

Rhode Island 1 0 0 0 9

South Carolina 1 0 0 0 43

South Dakota 0 0 0 0 11

Tennessee 0 0 0 0 22

Texas 12 0 0 0 65

Utah 0 0 1 0 10

Vermont 1 0 0 0 19

Virgin Islands 0 0 0 0 0

Virginia* 6 0 0 0 31

Washington 5 0 0 0 38

West Virginia 2 0 0 0 2

Wisconsin 0 0 0 0 19

Wyoming 0 0 0 0 20

Total 131 12 16 4 912

Percentages 4% 0% 0% 0% 27%

100 
Table 5 – Abuse 

2011 

States 

Complaints Concerning 

Failure to 

Provide 

Medical 

Treatment 

Physical Assault 

Sexual 

Assault 

Staff Threats 

of Retaliation Coercion 

Financial 

Exploitation 

Suspicious 

Death Other 

Serious 

Injuries 

Related 

Serious 

Injuries 

Not Related 

Alabama* 4 1 11 4 8 0 0 0 1 

Alaska 1 0 0 2 0 0 2 0 0 

American 

Indian 

Consortium 0 0 1 1 0 0 0 0 0 

American 

Samoa* 0 0 0 0 0 0 2 0 0 

Arizona 2 0 2 0 7 0 1 0 0 

Arkansas 0 2 2 3 1 0 1 0 0 

California 15 4 11 4 14 15 14 3 0 

Colorado 3 1 2 3 3 0 0 2 0 

Connecticut* 1 0 1 0 3 0 2 1 0 

Delaware 2 0 2 2 1 0 6 2 0 

District of 

Columbia 4 1 4 3 1 0 4 3 1 

Florida 0 1 4 3 1 0 5 0 0 

Georgia 3 2 13 7 9 2 0 8 0 

Guam 0 0 0 0 0 0 0 0 0 

Hawaii 4 1 0 9 0 1 0 2 0 

Idaho 1 0 0 2 3 0 0 1 0 

Illinois 16 2 14 6 19 2 15 1 0 

Indiana 6 1 0 1 0 0 1 3 0 

Iowa* 0 0 1 0 1 0 0 0 0 

Kansas 1 2 10 2 3 3 8 1 0 

Kentucky* 0 0 2 0 1 0 1 11 0 

Louisiana 4 2 5 1 3 0 8 0 0 

Maine 20 0 0 0 2 0 8 0 0 

Maryland 2 1 12 1 3 0 0 1 1 

Massachusetts 5 0 1 3 1 4 0 3 0 

Michigan 2 0 4 2 11 0 0 1 0 

Minnesota 7 0 0 0 1 0 6 0 0 

Mississippi 4 0 2 0 3 2 1 0 0 

Missouri 12 1 7 3 1 0 0 4 0 

Montana 5 3 1 7 1 1 0 0 3 

Nebraska 4 1 2 4 0 0 1 0 0 

Nevada 0 0 0 0 0 0 0 0 0 

New 

Hampshire 7 1 0 0 4 1 12 0 0 

New Jersey 13 3 21 1 6 0 0 37 1 

New Mexico 3 1 2 0 4 0 0 0 0 

New York* 2 127 0 16 2 1 2 0 2 

101 
Table 5 – Abuse

2011 cont.

North Carolina 17 0 6 1 13 2 1 3 0

North Dakota* 1 0 7 3 5 2 18 0 0

North Mariana Islands 0 0 0 0 0 0 0 0 0

Ohio* 21 4 6 12 16 296 17 4 6

Oklahoma 3 0 3 0 2 2 2 0 0

Oregon 1 1 1 0 0 3 0 0 0

Pennsylvania 6 61 7 5 16 1 3 0 0

Puerto Rico* 1 0 1 0 0 0 0 0 0

Rhode Island 3 0 1 0 0 0 0 1 2

South Carolina 2 6 0 1 0 0 1 0 0

South Dakota 3 0 0 1 1 0 0 0 0

Tennessee 8 2 11 0 0 0 0 3 0

Texas 1 4 31 4 3 0 9 0 0

Utah 6 2 0 2 1 0 1 1 0

Vermont 3 3 3 3 4 2 1 0 1

Virgin Islands 1 1 1 0 1 1 1 0 0

Virginia* 3 0 1 0 0 0 0 0 2

Washington 11 3 10 6 5 2 5 0 0

West Virginia 0 3 1 0 1 0 1 1 1

Wisconsin 8 0 1 0 5 0 4 0 0

Wyoming 1 1 0 1 0 1 0 2 0

Total 253 249 228 129 190 344 164 99 21

Percentages 7% 7% 7% 4% 6% 10% 5% 3% 1%

102 
 

Table 6a – Neglect 

2011 

States Number of 

Neglect 

Complaints 

Closed 

Failure to Provide for Appropriate 

Resident/ 

Inpatient 

Admission 

Transport 

To/From 

Treatment 

Facility 

Discharge 

Planning 

Mental 

Health 

Diagnostic 

Medical 

Diagnostic 

Personal 

Care 

Safety 

Environment 

Personal 

Safety 

Written 

Treatment 

Plan 

Rehabilitation 

Vocational 

Programming Other 

Alabama* 224 98 1 83 3 5 3 1 6 2 1 21 

Alaska 1 0 0 1 0 0 0 0 0 0 0 0 

American Indian Consortium 2 0 0 0 0 0 2 0 0 0 0 0 

American Samoa* 6 0 0 1 0 0 4 0 0 0 1 0 

Arizona 41 0 0 4 25 3 2 1 4 2 0 0 

Arkansas 15 1 0 7 1 0 3 1 0 0 0 2 

California 79 4 2 24 7 7 13 3 11 4 4 0 

Colorado 28 1 0 13 8 2 0 0 2 2 0 0 

Connecticut* 26 1 0 16 0 4 1 0 2 2 0 0 

Delaware 9 0 0 3 0 1 2 0 1 0 1 1 

District of Columbia 42 0 1 20 1 4 13 0 2 1 0 0 

Florida 43 6 0 16 3 3 6 4 5 0 0 0 

Georgia 109 0 0 62 1 2 2 7 4 3 27 1 

Guam 6 0 0 3 0 1 1 0 0 0 1 0 

Hawaii 17 0 0 8 4 3 1 0 1 0 0 0 

Idaho 10 1 0 9 0 0 0 0 0 0 0 0 

Illinois 238 18 2 130 20 9 22 6 11 8 12 0 

Indiana 11 0 0 4 0 0 2 0 3 2 0 0 

Iowa* 1 1 0 0 0 0 0 0 0 0 0 0 

Kansas 58 3 2 19 4 9 9 2 1 8 1 0 

Kentucky* 2 0 0 0 1 1 0 0 0 0 0 0 

Louisiana 53 0 0 4 1 6 15 2 1 20 1 3 

Maine 26 2 1 16 0 1 2 0 3 1 0 0 

Maryland 16 0 0 12 1 0 0 0 0 0 1 2 

Massachusetts 33 6 0 17 3 2 3 0 2 0 0 0 

Michigan 58 1 0 17 13 5 20 0 2 0 0 0 

Minnesota 79 7 3 17 5 2 27 1 8 6 3 0 

Mississippi 11 0 0 6 1 1 3 0 0 0 0 0 

Missouri 47 1 0 6 4 16 12 2 4 2 0 0 

103 
Table 6a – Neglect

2011 cont. 

Montana 65 0 0 4 3 6 1 39 7 0 0 5

Subtotal 1356 151 12 522 109 93 169 69 80 63 53 35

Table 6a – Neglect

2012 

 

States Neglect 

Complaints 

Closed

Failure to Provide Appropriate

Residential/ 

Inpatient 

Admission

Transport 

To/From 

Treatment 

Facility

Discharge 

Planning

Mental 

Health 

Diagnostic

Medical 

Diagnostic

Personal 

Care

Safety 

Environment

Personal 

Safety

Written 

Treatment 

Plan

Rehabilitation 

Vocational 

Programming Other

Alabama* 147 76 0 30 2 7 2 6 10 2 0 12

Alaska 3 0 0 3 0 0 0 0 0 0 0 0 

American Indian Consortium 3 2 0 1 0 0 0 0 0 0 0 0

American Samoa* 4 0 0 0 0 0 2 2 0 0 0 0 

Arizona 34 0 0 5 13 8 6 0 1 1 0 0

Arkansas 16 0 0 9 0 0 2 0 4 1 0 0 

California 67 6 0 14 13 15 8 4 6 1 0 0

Colorado 41 1 0 18 5 4 0 5 1 7 0 0 

Connecticut* 16 1 0 12 0 1 1 1 0 0 0 0

Delaware 35 2 0 13 0 1 2 7 4 6 0 0 

District of Columbia 34 0 0 19 0 3 5 1 2 4 0 0

Florida 67 3 1 38 0 10 5 4 6 0 0 0 

Georgia 48 1 0 38 0 2 0 4 0 1 2 0

Guam 10 10 0 0 0 0 0 0 0 0 0 0 

Hawaii 10 1 0 1 2 1 1 0 3 0 0 1

Idaho 8 0 0 6 0 0 1 0 1 0 0 0 

Illinois 237 28 1 115 12 14 28 14 9 8 8 0

Indiana 38 0 0 14 1 2 9 2 9 0 1 0 

104 
Table 6a – Neglect

2012 cont. 

Iowa 3 0 0 1 0 0 1 0 1 0 0 0

Kansas 49 2 3 14 2 4 9 2 0 13 0 0 

Kentucky* 5 0 0 3 0 0 0 0 1 1 0 0

Louisiana 20 0 0 2 3 5 3 0 0 1 6 0 

Maine 19 3 0 16 0 0 0 0 0 0 0 0

Maryland 27 1 0 18 1 4 0 2 1 0 0 0 

Massachusetts 39 5 1 28 0 1 0 0 1 0 0 3

Michigan 22 0 0 8 1 1 11 0 0 1 0 0 

Minnesota 61 7 2 13 1 1 24 0 2 10 1 0

Mississippi 67 0 0 7 4 11 22 4 10 9 0 0 

Missouri 15 1 0 7 2 0 1 1 3 0 0 0

Montana 51 2 0 5 2 5 0 27 4 0 0 6 

Subtotal 1196 152 8 458 64 100 143 86 79 66 18 22

105 
 

Table 6b – Neglect 

2011 

States 

Number of Neglect Complaints 

Closed 

Failure to Provide for Appropriate 

Residence 

Inpatient 

Admission 

Transport 

To/From 

Treatment 

Facility 

Discha 

rge 

Planni 

ng 

Mental 

Health 

Diagnos 

tic 

Medic 

al 

Diagno 

stic 

Person 

al Care 

Safety 

Environ 

ment 

Personal 

Safety 

Written 

Treatment 

Plan 

Rehabilita 

tion 

Vocational 

Program 

ming Other 

Nebraska 0 0 0 0 0 0 0 0 0 0 0 0 

Nevada 26 1 0 21 2 1 0 0 0 0 0 1 

New Hampshire 54 2 2 29 1 0 1 0 0 19 0 0 

New Jersey 47 0 0 38 1 3 3 0 2 0 0 0 

New Mexico 18 0 0 3 0 0 12 0 0 0 3 0 

New York* 36 4 5 4 2 2 3 3 0 12 1 0 

North Carolina* 113 18 1 48 5 2 11 26 0 2 0 0 

North Dakota* 52 0 0 7 0 3 24 1 0 16 1 0 

North Mariana Islands 5 0 0 2 1 0 0 2 0 0 0 0 

Ohio* 62 5 1 15 4 6 21 1 2 0 7 0 

Oklahoma 2 0 0 0 0 0 0 1 0 1 0 0 

Oregon 7 0 0 2 2 2 1 0 0 0 0 0 

Pennsylvania 71 5 0 35 0 8 5 7 1 10 0 0 

Puerto Rico* 26 7 0 5 3 2 2 5 2 0 0 0 

Rhode Island 16 1 0 10 1 0 1 0 2 0 0 1 

South Carolina 11 1 0 6 1 2 0 0 1 0 0 0 

South Dakota 82 0 0 68 4 2 3 0 4 1 0 0 

Tennessee 6 0 0 0 0 2 1 1 2 0 0 0 

Texas 400 3 0 215 2 40 14 0 8 1 117 0 

Utah 24 0 0 5 1 0 5 1 2 8 2 0 

Vermont 32 2 0 12 3 0 2 4 2 2 3 2 

Virgin Islands 0 0 0 0 0 0 0 0 0 0 0 0 

Virginia* 43 0 0 35 1 2 0 0 0 0 4 1 

Washington 77 11 1 24 1 13 7 4 14 0 1 1 

West Virginia 13 0 0 7 0 2 1 0 1 1 0 1 

Wisconsin 43 0 0 20 3 5 5 2 4 2 2 0 

Wyoming 36 0 0 1 0 3 1 31 0 0 0 0 

Subtotal 6b 2,658 211 22 1,134 147 193 292 158 127 138 194 42 

106 
Table 6b – Neglect

2011 cont. 

Subtotal 6a 1356 151 12 522 109 93 169 69 80 63 53 35

Total 6a & 6b 4014 362 34 1656 256 286 461 227 207 201 247 77

107 
Table 7a – Rights Violations

2011 

 

States Number of 

Rights 

Complaints 

Closed

Discrimination in: Denial of:

Housing Employment

Reimbursement and 

Entitlement Guardianship

Rights 

Protect or 

Legal 

Assistance Privacy

Recreational 

Opportunities

Alabama* 31 1 0 1 4 2 0 1

Alaska 38 5 1 29 1 0 0 0

American Indian Consortium 10 1 1 2 2 0 0 0

American Samoa* 7 0 1 1 1 0 2 2

Arizona 43 2 0 3 2 23 4 2

Arkansas 45 10 1 0 1 1 1 0

California 591 157 44 180 69 20 17 3

Colorado 27 5 0 3 0 3 5 3

Connecticut* 16 3 1 0 0 6 0 0

Delaware 82 7 0 33 4 5 2 1

District of Columbia 8 2 0 0 0 0 1 0

Florida 110 15 0 8 10 42 1 2

Georgia 7 1 0 2 0 1 1 0

Guam 15 0 0 1 6 0 0 0

Hawaii 208 9 2 41 2 4 0 7

Idaho 77 0 0 63 4 0 0 0

Illinois 406 11 63 17 30 12 10 11

Indiana 15 0 0 2 0 2 0 3

Iowa* 37 4 12 1 4 6 2 0

Kansas 208 63 14 27 9 13 2 0

Kentucky* 18 1 0 1 2 4 1 3

Louisiana 29 0 0 5 3 4 1 2

Maine 106 35 17 4 9 2 2 1

Maryland 6 0 0 3 0 3 0 0

Massachusetts 74 9 12 4 0 7 0 5

Michigan 72 13 3 1 5 11 3 4

Minnesota 142 9 7 4 19 10 2 2

Mississippi 59 2 1 4 3 2 0 0

Missouri 80 6 2 30 20 2 10 2

108 
Table 7a – Rights Violations

2011 cont.

Montana 27 4 1 0 1 8 2 2

Nebraska 2 0 0 1 1 0 0 0

Nevada 53 4 0 12 2 28 1 1

New Hampshire 126 14 8 17 2 3 0 0

New Jersey 69 1 8 1 1 0 3 5

New Mexico 14 0 0 1 7 3 0 0

New York* 143 27 9 33 0 8 4 0

North Carolina 80 4 3 15 6 33 0 7

North Dakota* 67 1 4 5 0 10 0 0

North Mariana Islands 7 0 1 4 0 0 0 0

Ohio* 377 38 38 32 30 116 12 17

Oklahoma 240 26 7 94 2 14 1 1

Oregon 23 7 1 4 3 4 0 0

Pennsylvania 794 104 50 275 9 135 7 3

Puerto Rico* 71 5 7 3 15 0 0 0

Rhode Island 36 14 1 0 3 2 0 0

South Carolina 25 5 0 1 1 2 1 0

South Dakota 53 2 1 12 4 0 2 0

Tennessee 50 1 7 0 0 1 0 5

Texas 455 14 30 10 23 34 10 16

Utah 147 0 0 30 29 83 0 0

Vermont 39 6 3 1 0 8 2 3

Virgin Islands 5 0 1 0 0 2 0 0

Virginia* 47 4 2 1 5 0 3 2

Washington 282 49 21 39 13 47 27 23

West Virginia 17 3 0 1 0 2 2 2

Wisconsin 46 3 8 1 0 6 1 2

Wyoming 13 0 0 0 0 1 2 0

Total 5,875 707 393 1,063 367 735 147 143

Percentages 100% 12% 7% 18% 6% 13% 3% 2%

109 
Table 7b – Rights Violations

2011 

States

Number of 

Rights 

Complaints 

Closed

Denial to: Failure to Provide:

Problems 

with 

Advance 

Directives

Denial of 

Parental 

Rights

 

Visitors

Access to 

Records

 

Confidentiality

Informed 

Consent

 

Education

Alabama* 31 0 0 1 0 20 0 1

Alaska 38 0 1 0 0 1 0 0

American Indian Consortium 10 0 0 0 0 2 0 2

American Samoa* 7 0 0 0 0 0 0 0

Arizona 43 0 5 2 0 0 0 0

Arkansas 45 0 3 1 0 26 0 1

California 591 0 14 3 3 50 8 23

Colorado 27 0 2 2 1 1 0 2

Connecticut* 16 1 2 0 1 1 0 1

Delaware 82 0 3 0 0 22 3 2

District of Columbia 8 0 1 0 3 0 1 0

Florida 110 1 1 1 20 9 0 0

Georgia 7 0 0 0 0 2 0 0

Guam 15 1 1 0 0 5 1 0

Hawaii 208 0 0 0 0 85 58 0

Idaho 77 1 1 0 0 8 0 0

Illinois 406 3 9 10 1 205 6 18

Indiana* 15 0 0 1 0 7 0 0

Iowa 37 0 1 0 0 7 0 0

Kansas 208 12 4 3 24 37 0 0

Kentucky* 18 1 0 0 2 2 0 1

Louisiana 29 0 3 2 0 8 1 0

Maine 106 0 0 0 1 34 0 1

Maryland 6 0 0 0 0 0 0 0

Massachusetts 74 1 0 1 0 35 0 0

Michigan 72 0 0 1 0 30 0 1

Minnesota 142 0 1 2 2 78 3 3

Mississippi 59 0 0 0 2 43 2 0

Missouri 80 3 1 0 0 4 0 0

Montana 27 0 0 0 1 6 0 2

110 
Table 7b – Rights Violations

2011 cont.

Nebraska 2 0 0 0 0 0 0 0

Nevada 53 0 0 1 0 4 0 0

New Hampshire 126 0 0 1 0 80 0 1

New Jersey 69 4 0 1 0 43 0 2

New Mexico 14 0 0 1 1 0 1 0

New York* 143 0 8 7 2 34 5 6

North Carolina 80 0 0 0 0 10 0 2

North Dakota* 67 0 0 0 0 47 0 0

North Mariana Islands 7 0 0 0 0 2 0 0

Ohio* 377 3 15 7 3 38 12 16

Oklahoma 240 0 1 1 1 88 0 4

Oregon 23 0 0 1 2 1 0 0

Pennsylvania 794 3 1 2 0 165 8 32

Puerto Rico* 71 0 2 0 0 39 0 0

Rhode Island 36 0 0 1 1 14 0 0

South Carolina 25 0 0 0 0 15 0 0

South Dakota 53 0 0 0 0 32 0 0

Tennessee 50 0 0 0 0 36 0 0

Texas 455 0 6 2 40 259 0 11

Utah 147 0 0 0 0 0 0 5

Vermont 39 1 1 2 1 9 1 1

Virgin Islands 5 0 0 0 1 1 0 0

Virginia* 47 0 2 0 0 2 25 1

Washington 282 2 5 9 1 11 5 30

West Virginia 17 1 0 1 0 5 0 0

Wisconsin 46 0 0 0 0 24 0 1

Wyoming 13 0 0 0 0 10 0 0

Total 5,875 38 94 67 114 1,697 140 170

111 
Table 7b – Rights Violations

2012 

States

Number of 

Rights 

Complaints 

Closed

Denial to: Failure to Provide:

Problems 

with 

Advance 

Directives

Denial of 

Parental 

Rights

 

Visitors

Access to 

Records

 

Confidentiality

Informed 

Consent

 

Education

Alabama* 50 0 1 0 1 20 0 2

Alaska 41 0 0 1 0 0 0 0

American Indian Consortium 18 0 0 0 0 14 0 0

American Samoa* 9 2 0 0 0 0 0 1

Arizona 35 0 6 1 0 0 0 0

Arkansas 60 0 1 0 0 32 0 1

California 1,045 1 13 7 2 71 4 13

Colorado 30 0 1 1 5 1 0 4

Connecticut* 10 0 0 0 0 1 1 0

Delaware 84 1 1 0 0 16 1 5

District of Columbia 14 0 0 0 4 0 0 0

Florida 76 0 0 1 1 15 1 0

Georgia 31 0 0 0 0 3 0 0

Guam 13 0 0 0 0 5 0 0

Hawaii 149 0 1 0 0 61 48 0

Idaho 106 0 2 0 2 12 0 1

Illinois 539 1 18 6 3 210 4 21

Indiana* 27 1 0 0 0 6 0 0

Iowa 59 0 0 0 1 13 0 0

Kansas 440 1 2 14 44 48 1 8

Kentucky* 8 0 0 0 0 0 0 1

Louisiana 47 0 1 1 0 19 1 0

Maine 88 0 0 0 0 32 0 0

Maryland 32 3 0 0 0 0 0 1

Massachusetts 55 0 0 0 1 29 1 0

Michigan 66 0 1 0 0 35 0 0

Minnesota 216 3 2 2 1 71 35 3

Mississippi 98 0 0 0 0 73 2 0

Missouri 99 4 2 0 1 4 0 0

Montana 18 0 1 0 2 7 0 1

 

112 
Table 7b – Rights Violations

2012 cont.

Nebraska 5 0 0 0 0 0 0 0

Nevada 52 0 0 1 0 4 0 0

New Hampshire 329 0 5 1 0 61 0 6

New Jersey 69 0 1 0 6 31 1 0

New Mexico 55 3 3 0 1 9 0 0

New York* 89 0 6 0 1 10 1 4

North Carolina 77 1 1 0 0 10 0 2

North Dakota* 61 0 0 0 0 42 0 0

North Mariana Islands 17 0 0 1 0 2 0 0

Ohio* 617 0 14 7 15 48 16 12

Oklahoma 379 0 2 2 0 81 1 28

Oregon 20 2 0 0 2 2 0 0

Pennsylvania 634 1 5 3 2 150 10 23

Puerto Rico* 53 1 0 1 0 20 0 0

Rhode Island 44 0 0 0 0 18 1 0

South Carolina 33 0 0 0 0 17 0 1

South Dakota 55 0 1 0 0 35 0 0

Tennessee 56 0 0 0 0 38 0 13

Texas 632 0 6 3 49 328 0 12

Utah 221 0 0 7 0 0 1 5

Vermont 36 0 0 0 0 1 9 0

Virgin Islands 7 0 0 0 0 1 0 0

Virginia* 23 2 1 0 0 2 8 0

Washington 248 1 3 4 2 9 4 26

West Virginia 37 1 0 1 1 7 0 0

Wisconsin 64 0 1 0 0 27 0 0

Wyoming 7 0 0 1 0 0 0 0

Total 7,483 29 102 66 147 1,223 151 194

113 
Table 7c – Rights Violations

2011 

 States

Deaths Reported Death Investigations Conducted

State

Center for 

Medicare 

& Medicaid Other Seclusion

Not Related to 

S\R Total Total Restraint

Alabama* 1 0 0 1 1 0 0 1

Alaska 4 0 0 4 4 0 0 4

American Indian Consortium 0 0 0 0 0 0 0 0

American Samoa* 0 0 0 0 0 0 0 0

Arizona 1 0 0 1 0 0 0 0

Arkansas 0 0 0 0 0 0 0 0

California 11 1 1 9 9 1 3 5

Colorado 0 0 0 0 6 0 0 6

Connecticut* 11 11 0 0 1 0 0 1

Delaware 17 17 0 0 17 0 0 17

District of Columbia 5 0 0 5 3 0 0 3

Florida 6 1 0 5 6 0 0 6

Georgia 7 7 0 0 9 0 0 9

Guam 0 0 0 1 1 0 0 1

Hawaii 0 0 0 0 0 0 0 0

Idaho 2 0 0 2 1 0 0 1

Illinois 18 14 1 3 11 0 2 9

Indiana 2 0 0 2 3 0 0 3

Iowa* 0 0 0 0 0 0 0 0

Kansas 0 0 0 0 0 0 0 0

Kentucky* 15 14 1 0 15 0 0 15

Louisiana 2 0 0 2 2 0 0 2

Maine 1 0 1 0 0 0 0 0

Maryland 83 83 0 0 10 0 0 10

Massachusetts 344 344 0 0 2 0 1 1

Michigan 21 6 0 15 21 0 1 20

Minnesota 0 0 0 0 0 0 0 0

Mississippi 0 0 0 0 0 0 0 0

114 
Table 7c – Rights Violations

2011 cont.

Missouri 215 207 0 8 15 0 0 15

Montana 0 0 0 0 0 0 0 0

Nebraska 0 0 0 0 0 0 0 0

Nevada 0 0 0 0 0 0 0 0

New Hampshire 0 0 0 0 0 0 0 0

New Jersey 51 50 1 0 51 0 0 51

New Mexico 0 0 0 0 0 0 0 0

New York* 1316 1316 0 0 17 0 0 17

North Carolina 103 102 0 1 7 0 1 6

North Dakota* 2 0 0 2 0 0 0 0

North Mariana Islands 1 0 0 1 1 0 0 1

Ohio* 193 192 1 0 1 0 1 0

Oklahoma 0 0 0 0 0 0 0 0

Oregon 0 0 0 0 0 0 0 0

Pennsylvania 40 40 0 0 40 0 0 40

Puerto Rico* 1 0 0 1 1 0 0 1

Rhode Island 1 0 0 1 1 0 0 1

South Carolina 0 0 0 0 0 0 0 0

South Dakota 0 0 0 0 0 0 0 0

Tennessee 3 0 0 3 3 0 1 2

Texas 17 0 0 17 17 0 3 14

Utah 1 1 0 0 1 0 0 1

Vermont 7 0 0 7 7 2 0 5

Virgin Islands 0 0 0 0 0 0 0 0

Virginia* 58 57 0 1 3 0 1 2

Washington 0 0 0 0 4 0 1 3

West Virginia 0 0 0 0 1 0 0 1

Wisconsin 15 10 1 4 15 0 1 14

Wyoming 2 2 0 0 2 0 0 2

Total 2578 2475 7 96 309 3 16 290

Percentages 100% 96% 0% 4% 100% 1% 5% 94%

115 
Table 8 – Intervention Strategies

2011 

States Total 

Intervention 

Strategies

Short 

Term 

Assistance

Abuse Neglect 

Investigation

Technical 

Assistance

Administrative 

Remedies

Negotiation/ 

Investigations

Legal 

Remedies

Alabama* 324 222 60 1 9 27 5

Alaska 55 23 3 0 19 7 3

American Indian Consortium 15 3 0 1 4 0 7

American Samoa* 59 16 11 7 2 22 1

Arizona 309 13 6 287 0 3 0

Arkansas 88 55 3 17 7 6 0

California 1,456 1408 13 5 8 14 8

Colorado 83 18 26 16 0 19 4

Connecticut* 78 53 4 10 10 1 0

Delaware 113 57 5 16 20 9 6

District of Columbia 85 34 12 17 15 7 0

Florida 197 72 51 42 5 24 3

Georgia 186 13 90 8 1 73 1

Guam 24 10 4 0 1 8 1

Hawaii 257 110 49 31 29 36 2

Idaho 143 51 11 75 5 0 1

Illinois 862 312 410 41 16 76 7

Indiana 53 23 22 6 0 2 0

Iowa* 61 39 7 1 1 5 8

Kansas 404 98 5 279 3 5 14

Kentucky* 116 54 16 46 0 0 0

Louisiana 128 97 14 5 3 4 5

Maine 182 63 3 9 18 81 8

Maryland 73 10 51 8 0 3 1

Massachusetts 151 115 5 7 0 23 1

Michigan 240 38 62 25 7 18 90

Minnesota 371 215 2 101 18 34 1

Mississippi 103 48 36 3 1 11 4

Missouri 199 12 31 51 10 85 10

Montana 184 103 71 2 4 0 4

116 
Table 8 – Intervention Strategies

2011 cont.

Nebraska 23 1 20 0 0 1 1

Nevada 99 63 0 34 2 0 0

New Hampshire 254 85 6 148 3 7 5

New Jersey 256 42 153 35 2 20 4

New Mexico 143 94 23 9 2 13 2

New York 566 174 185 123 22 42 20

North Carolina 384 341 14 0 5 23 1

North Dakota* 425 128 153 7 15 117 5

North Mariana Islands 17 0 7 2 1 6 1

Ohio* 953 613 167 105 3 58 7

Oklahoma 298 259 4 1 6 25 3

Oregon 85 37 9 0 0 29 10

Pennsylvania 780 218 7 549 2 3 1

Puerto Rico* 101 15 18 2 10 54 2

Rhode Island 94 22 24 34 2 7 5

South Carolina 103 31 54 1 2 15 0

South Dakota 157 69 6 6 7 66 3

Tennessee 105 28 50 9 0 15 3

Texas 1,120 494 81 106 40 353 46

Utah 342 269 44 6 2 21 0

Vermont 145 77 56 6 4 0 2

Virgin Islands 26 17 4 1 0 2 2

Virginia* 143 65 14 10 14 25 15

Washington 627 0 7 619 0 1 0

West Virginia 57 36 3 6 0 12 0

Wisconsin 564 91 157 99 14 203 0

Wyoming 79 14 46 0 0 19 0

Total 14,545 6,668 2,395 3,035 374 1,740 333

Percentages 100.0% 45.8% 16.5% 20.9% 2.6% 12.0% 2.3%

117 
Table 9 – Group Advocacy Strategies 

2011 

States

Non-Litigation Advocacy Class Action Litigation

Legislative & Regulatory 

Advocacy

Alabama* 10 48,380 0 0 35 902,761

Alaska 3 152 1 300 1 0 

American Indian Consortium 1 8,500 0 0 1 8,500

American Samoa* 2 150 0 0 2 2 

Arizona 4 209,808 2 209,808 2 209,808

Arkansas 2 2,133 0 0 0 0 

California 16 7,816,758 6 55,850 6 2,050,000

Colorado 2 500 0 0 2 4,500

Connecticut* 7 791,719 1 4,000 2 113,207

Delaware 21 1,490 0 0 10 16,410

District of Columbia 3 30,000 3 4,800 3 10,500

Florida 23 35,250 0 0 117 5,662,886

Georgia 29 1,456,812 4 1,456,812 8 1,456,812

Guam 2 0 0 0 0 0 

Hawaii 0 0 2 12,200 2 1,000

Idaho 0 0 0 0 4 74,000

Illinois 1 535,115 3 58,500 5 535,115

Indiana 6 1,095 1 4,476 2 85,791

Iowa* 9 336,139 0 0 3 336,043

Kansas 1 744,000 0 0 2 744,000

Kentucky* 10 874,000 3 874,000 80 874,000

Louisiana 14 2,294 1 250 12 188,691

Maine 14 56,000 1 12,500 48 56,000

Maryland 2 750 1 1,000 1 100,000

Massachusetts 14 894,056 0 0 7 50,716

Michigan 0 0 0 0 2 513,000

Minnesota 2 223 0 0 8 7,470

Mississippi 5 550 0 0 3 4,000

Missouri 7 940 1 3,000 0 0

Montana 0 53,000 0 0 2 53,000

118 
Table 9 – Group Advocacy Strategies

2011 cont.

Nebraska 6 244 0 0 17 23,000

Nevada 1 20,000 0 0 0 25,000

New Hampshire 0 0 1 160 75 100,000

New Jersey 3 6,000 4 25,550 2 16,500

New Mexico 1 150 0 0 4 79,340

New York 1 833 7 10,000 2 4,000

North Carolina 3 7,000 0 0 10 50,000

North Dakota* 0 0 0 0 10 11,487

North Mariana Islands 0 0 0 0 0 0

Ohio* 11 585 3 140,200 30 115,424

Oklahoma 7 6,796 0 0 2 1,500

Oregon 1 800 0 0 3 900

Pennsylvania 4 44,270 1 1,500 4 36,302

Puerto Rico* 5 171 0 0 2 600,000

Rhode Island 5 35,080 0 0 5 46,000

South Carolina 1 168,913 1 2,400 1 4,185

South Dakota 0 0 0 0 0 100

Tennessee 45 933,000 0 0 5 340,000

Texas 1 70,120 1 4,000 4 220,000

Utah 10 1,050 0 0 12 90,339

Vermont 30 1,600 0 0 22 4,250

Virgin Islands 1 28,025 0 0 3 28,000

Virginia* 0 0 0 0 0 0

Washington 14 116,245 12 281,000 32 29,068

West Virginia 3 151,042 1 31,924 4 151,042

Wisconsin 71 3,526,708 0 0 0 263,000

Wyoming 8 500 0 0 7 2,380

Total 442 19,018,946 61 3,194,230 626 16,300,029

119 
Table 10 – Public Awareness & Educational Training Activities

2011 

States

Persons 

Trained

Information & 

Referral

Public 

Awareness 

Events

Public Awareness 

Recipients

Education 

Trainings

Alabama * 540 15 1,099 26 1,226

Alaska 655 3 215 13 196

American Indian Consortium 3,815 2 525 3 324

American Samoa * 833 3 307 7 1,200

Arizona 258 28 4,892 10 303

Arkansas 557 62 6,317 19 762

California 318 208 15,993 161 5,549

Colorado 521 1 5,000 2 55

Connecticut * 338 14 3,125 37 793

Delaware 270 8 1,710 40 892

District of Columbia 10 4 646 42 642

Florida 2,484 66 370,559 27 3,133

Georgia 592 19 4,915 73 2,200

Guam 42 78 57,661 134 1,991

Hawaii 654 281 6,336 60 1,123

Idaho 442 13 1,463 16 423

Illinois 681 42 6,049 141 3,797

Indiana 403 3 600 36 274

Iowa* 26 3 1,085 3 369

Kansas 34 5 35,455 136 5,020

Kentucky * 783 58 1,524 42 500

Louisiana 496 46 2,097 41 1,423

Maine 536 9 275 82 2,378

Maryland 162 1 23 59 1,585

Massachusetts 2,186 9 489,100 18 5,173

Michigan 2,363 21 300,000 23 565

Minnesota 133 4 870 38 2,290

120 
Table 10 – Public Awareness & Educational Training Activities

2011 cont.

Mississippi 334 24 3,294 41 1,196

Missouri 739 34 7,102 15 676

Montana 388 16 370 6 870

Nebraska 186 4 200 10 228

Nevada 779 31 957 10 305

New Hampshire 343 22 1,650 19 566

New Jersey 768 45 12,350 10 220

New Mexico 503 17 3,140 20 471

New York * 936 35 937 23 647

North Carolina 572 149 7,200 13 355

North Dakota * 417 18 761 13 280

North Mariana Islands 112 18 2,374 21 484

Ohio * 51 10 745 16 379

Oklahoma 475 8 3,260 18 1,372

Oregon 1,042 7 185 5 95

Pennsylvania 200 14 4,786 37 1,417

Puerto Rico * 506 52 1,883,613 32 2,107

Rhode Island 272 15 1,091 6 418

South Carolina 614 0 0 8 203

South Dakota 478 97 4,168 11 312

Tennessee 681 96 557,541 21 1,677

Texas 2,580 93 5,340 139 6,102

Utah 629 34 6,524 43 2,539

Vermont 889 19 320 23 143

Virgin Islands 11 14 34,375 11 1,375

Virginia * 3,155 9 217 59 1,484

Washington 1,403 73 9,940 40 2,806

West Virginia 280 19 2,637 5 148

Wisconsin 445 0 0 19 1,545

Wyoming 250 144 6,004 23 1,209

Total 40,170 2,123 3,878,922 2,006 75,815

121 
Table 10 – Public Awareness & Educational Training Activities

2012 

 States

Information & 

Referral

Public Awareness 

Events

Public Awareness 

Recipients

Educational 

Trainings

Total Persons 

Trained

Alabama * 681 4 1,040 4 1,260

Alaska 540 3 215 3 189

American Indian Consortium 3 4 1,544 6 378

American Samoa * 122 51 20,000 5 620

Arizona 315 59 15,054 17 727

Arkansas 398 17 5,744 5 125

California 154 347 19,073 148 4,411

Colorado 709 7 35,600 4 130

Connecticut * 525 30 30,000 15 405

Delaware 458 8 1,710 40 892

District of Columbia 10 4 646 42 642

Florida 2,484 66 370,559 27 3,133

Georgia 592 19 4,915 73 2,200

Guam 42 78 57,661 34 1,991

Hawaii 654 281 6,336 60 1,123

Idaho 442 13 1,463 16 423

Illinois 681 42 6,049 141 3,797

Indiana * 403 3 600 36 434

Iowa 26 3 1,085 6 274

Kansas 34 35 1,240,654 136 5,020

Kentucky * 783 58 1,524 42 500

Louisiana 496 46 2,097 41 1,423

Maine 541 3 250 79 2,098

Maryland 166 17 800 88 3,074

Massachusetts 2,458 15 617,864 18 1,954

Michigan 2,428 6 1,230 31 818

Minnesota 121 9 1,870 39 2,340

Mississippi 237 24 8,034 28 8,034

122 
 Table 10 – Public Awareness & Educational Training Activities

 2012 cont.

Missouri 978 31 8,000 15 457

Montana 441 18 717 18 717

Nebraska 230 51 294,610 5 114

Nevada 698 79 2,394 6 477

New Hampshire 455 0 0 21 1,358

New Jersey 781 31 6,665 17 799

New Mexico 734 24 5,460 24 729

New York * 861 15 933 31 849

North Carolina 1,468 56 3,000 8 490

North Dakota * 386 22 21,067 17 325

North Mariana Islands 183 43 8,000 56 2,331

Ohio * 65 39 1,328 15 530

Oklahoma 500 9 3,080 20 2,238

Oregon 1,043 14 235 7 175

Pennsylvania 10 7 1,550 19 1,111

Puerto Rico * 506 32 2,107 53 4,332

Rhode Island 282 8 1,425 4 92

South Carolina 560 22 10,993 29 805

South Dakota 327 81 3,308 13 331

Tennessee 589 78 11,529 42 1,141

Texas 2,305 18 2,999 99 4,548

Utah 464 24 9,693 33 66,282

Vermont 718 20 269 18 156

Virgin Islands 14 19 1,246 12 336

Virginia * 2,825 34 1,060 17 1,567

Washington 918 33 101,806 54 506

West Virginia 283 22 6,883 10 153

Wisconsin 464 19 1,075 28 628

Wyoming 194 239 5,500 47 232

Total 35,785 2,340 2,970,549 1,922 142,224

123