National Council on Disability 

An independent federal agency making recommendations to the President and 

Congress to enhance the quality of life for all Americans with disabilities and their 

families. 

1 

Letter of Transmittal 

February 15, 2011 

The President 

The White House 

Washington, DC 20500 

Dear Mr. President: 

On behalf of the National Council on Disability (NCD), I am pleased to submit the report 

entitled Rising Expectations: The Developmental Disabilities Act Revisited. The 

Developmental Disabilities Assistance and Bill of Rights Act (Developmental Disabilities 

Act), originally authorized in 1963 and last reauthorized in 2000, established a set of 

programs to improve the lives of people with developmental disabilities (DD), to protect 

their civil and human rights, and to promote their maximum potential through increased 

independence, productivity, and integration into the community. 

NCD conducted a year-long study of how well these programs are meeting the needs of 

people with developmental disabilities and their families. This report presents the 

findings and offers recommendations for changes to help develop a more uniform 

national policy that will support the goals of the Developmental Disabilities Act and 

improve the program supports and services for people with developmental disabilities. 

Since passage of the Developmental Disabilities Act, the United States has witnessed a 

major transformation of what it means to live with a developmental disability. Before the 

Act, professionals routinely advised parents and other relatives to institutionalize family 

members with developmental disabilities. As this report is prepared, more than 

70 percent of people with developmental disabilities who receive residential services 

live in small group homes or on their own in the community. Access to a free 

appropriate public education is the right of and typical for children with DD rather than 

universal exclusion from public education. People with developmental disabilities were 

once expected to die young, and expectations for their lifetime accomplishments were 

small, but today their life expectancies approach that of the general population. They 

are among the ranks of Americans who graduate from high school, pursue post 

secondary education or training, enter the workforce, volunteer, and otherwise 

participate in the daily life of their communities. 

1331 F Street, NW  Suite 850  Washington, DC 20004 

202-272-2004 Voice  202-272-2074 TTY  202-272-2022 Fax  www.ncd.gov 
2 

Despite some identified gains in disability rights, people with developmental disabilities 

continue to face considerable barriers to full integration, maximum independence, and 

self-determination. Support services vary dramatically by state, and long waiting lists 

restrict access to services such as health care, housing, and employment. Major issues 

and needs remain in some areas, including unmet federal requirements for transition 

from school age to adulthood, access to and use of assistive technology, and support to 

children with disabilities in foster care. 

Although the original intent of Congress was that the Administration on Developmental 

Disabilities would encourage collaboration among agencies that manage the key 

domains in the life of people with developmental disabilities, such collaboration is 

lacking. Today, federal developmental disability policy is established, primarily by 

default, through the reimbursement mechanisms of the Centers for Medicare and 

Medicaid Services. 

Congress is expected to reauthorize the Developmental Disabilities Act (the Act) soon, 

making this an opportune time to consider recommendations to ensure that the Act is 

structured appropriately in relation to the new realities and expectations of people with 

developmental disabilities, their families, and the goals of our nation for all Americans. 

The recommendations in this report are intended to address key issues and offer a way 

forward when the Developmental Disabilities Act reauthorization process begins. 

NCD is deeply appreciative of your efforts on behalf of people with disabilities. NCD 

stands ready to work with you, members of your Administration, and the leadership in 

Congress as you work to improve programs and outcomes for people with 

developmental disabilities. 

Sincerely, 

Jonathan Young 

Chairman 

(The same letter of transmittal was sent to the President Pro Tempore of the U.S. 

Senate and the Speaker of the House of Representatives.) 
National Council on Disability Members and Staff 

Members 

Jonathan Young, Ph.D., J.D., Chairman 

Fernando Torres-Gil, Ph.D., Vice Chair 

Linda Wetters, Vice Chair 

Gary Blumenthal 

Victoria Ray Carlson 

Chester A. Finn 

Sara Gelser 

Marylyn Howe 

Lonnie Moore 

Ari Ne’eman 

Dongwoo Joseph “Joe” Pak 

Carol Reynolds 

Pamela Young-Holmes 

Staff 

Aaron Bishop, Executive Director 

Stacey S. Brown, Staff Assistant 

Julie Carroll, Senior Attorney Advisor 

Joan M. Durocher, General Counsel and Director of Policy 

Sharon M. Lisa Grubb, Director of Operations and Administration (Acting) 

Geraldine Drake Hawkins, Ph.D., Senior Policy Analyst 

Anne C. Sommers, Director of Legislative Affairs and Outreach (Acting) 

Carla Nelson, Administrative Specialist 

3 
Acknowledgments 

The National Council on Disability expresses its deepest appreciation to Susan Daniels, 

president, Daniels and Associates, and her colleagues Barbara Butz, Nanette 

Goodman, and John Kregel, for their insightful research and writing of this report. 

A panel of technical advisors and experts provided varied perspectives and valuable 

contributions. 

Technical Advisors: 

Heidi Lawyer 

Sarah Mitchell 

David Mank 

Julie Petty 

Curtis Richards 

Sue Swenson 

Experts: 

Mike Brogioli, National Association of Councils on Developmental Disabilities 

Curt Decker, National Disability Rights Network 

George Jesien, Association of University Centers on Disabilities 

4 
Contents 

Executive Summary .................................................................................................... 13

Chapter 1. Overview and Cross-Cutting Issues ....................................................... 23

1. Introduction .......................................................................................... 23

2. Methodology ........................................................................................ 26

3. History and Context of the Act ............................................................. 27

a. 1963–1975................................................................................... 27

b. 1975–present............................................................................... 29

4. The DD Act .......................................................................................... 34

a. State and Territorial Councils....................................................... 34

b. Protection and Advocacy for People with Developmental 

Disabilities................................................................................. 35

c. University Centers for Excellence in Developmental 

Disabilities................................................................................. 36

d. Projects of National Significance ................................................. 36

e. Family Support Programs ............................................................ 37

f. Direct Support Workforce.............................................................. 38

5. Position of the Federal Office............................................................... 38

6. Monitoring and Evaluation ................................................................... 40

a. Accountability and Oversight ....................................................... 40

b. Outcomes .................................................................................... 42

c. Performance Measures................................................................ 43

d. Developmental Disabilities Program Independent Evaluation 

(DDPIE)..................................................................................... 44

e. Previous Evaluations ................................................................... 47

7. Other Issues That Affect All Programs................................................. 48

a. Collaboration................................................................................ 48

b. Funding Level .............................................................................. 49

c. Areas of Emphasis....................................................................... 49

8. Self-Advocacy...................................................................................... 51

9. Recommendations............................................................................... 53

10. UCEDDs ............................................................................................ 55

11. State and Territorial Councils............................................................. 55

12. Protection and Advocacy ................................................................... 56

13. Projects of National Significance ....................................................... 57

14. Family Support................................................................................... 58

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15. Direct Support Workforce................................................................... 58

16. Self-Advocacy.................................................................................... 59

Chapter 2. University Centers for Excellence in Developmental Disabilities ........ 61

1. Introduction .......................................................................................... 61

2. Program Goals..................................................................................... 63

3. History and Context ............................................................................. 65

4. How the Program Operates ................................................................. 66

a. Core Grant................................................................................... 67

b. Leveraging Other Funding Sources ............................................. 67

c. Five-Year Plans ........................................................................... 69

d. Consumer Advisory Committee ................................................... 70

e. Areas of Emphasis....................................................................... 70

f. National Training Initiatives on Critical and Emerging Needs ....... 72

5. Accomplishments................................................................................. 73

6. Strengths and Weaknesses ................................................................. 74

a. Long History and Stable Programs .............................................. 74

b. Interdisciplinary Focus ................................................................. 74

c. University Affiliation...................................................................... 75

d. Technical Assistance Center ....................................................... 76

e. Consumer Input ........................................................................... 79

f. Follow the Lead of the DD Act ...................................................... 80

7. Major Issue—Funding.......................................................................... 81

a. Leveraging................................................................................... 82

b. Flat Funding................................................................................. 83

c. Closed Competition...................................................................... 84

d. Funding Level .............................................................................. 84

8. Current Monitoring and Evaluation Activities ....................................... 86

a. Annual Report.............................................................................. 86

b. Monitoring and Technical Assistance Review System................. 86

c. Application for Continued Funding and Peer Review................... 87

d. Performance Measures................................................................ 87

9. Promising Practices ............................................................................. 88

a. Coordination with State Agencies ................................................ 88

b. Technical Assistance and Dissemination..................................... 89

c. Research, Policy, and Practice Working Together....................... 89

6 
d. Outreach to the General Population ............................................ 89

e. Infusing Disability Topics into a General Curriculum.................... 90

f. Community Participation............................................................... 90

10. Recommendations............................................................................. 90

Chapter 3. State and Territorial Councils.................................................................. 93

1. Introduction .......................................................................................... 93

2. Program Goals..................................................................................... 93

3. History and Context ............................................................................. 94

4. How the Program Operates ................................................................. 96

a. Independence from State Interference......................................... 96

b. Structure and Function of the Council.......................................... 97

c. Five-Year Plan Guides Activities.................................................. 98

d. Program Performance Report (PPR) ........................................... 99

e. Key Principles .............................................................................. 99

f. Council Areas of Emphasis......................................................... 101

g. Leveraging Resources............................................................... 103

5. Accomplishments............................................................................... 103

a. Development of a National Council Network.............................. 103

b. Visibility...................................................................................... 104

c. Training of Self-advocates and Their Family Members.............. 104

d. Participation in National Disability Rights Activities.................... 104

e. Historical Trends........................................................................ 105

f. Fiscal Effort................................................................................. 105

6. Strengths and Weaknesses ............................................................... 106

a. Positioning Within State Government/Independence from 

Interference............................................................................. 107

b. Flexible Resources .................................................................... 107

c. Organizational Longevity............................................................ 107

d. Ability to Set State-Specific Priorities......................................... 107

e. National Network Partnership .................................................... 108

f. System Navigation and Family Support...................................... 108

7. Major Issues ...................................................................................... 108

a. Governor’s Influence.................................................................. 108

b. Lack of National Leadership on Issues ...................................... 109

c. Lack of Authority or Resources to Impact State and Federal 

Systems .................................................................................. 109

d. Funding/Resources.................................................................... 109

e. Need for Improved Technical Assistance to DD Councils.......... 111

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8. Current Monitoring and Evaluation Activities ..................................... 112

a. Performance Reported Through ADD Annual Report................ 112

b. Outcomes as Measured by GPRA Process............................... 113

9. Promising Practices ........................................................................... 114

a. Leadership in Policymaking ....................................................... 114

b. Leveraging................................................................................. 115

c. Systemic Change Activities........................................................ 115

d. Demonstrating New Service Approaches .................................. 116

10. Recommendations........................................................................... 116

Chapter 4. Protection and Advocacy for Individuals with Developmental 

Disabilities ................................................................................................................. 119

1. Introduction ........................................................................................ 119

2. Program Goals................................................................................... 121

3. History and Context ........................................................................... 122

4. How the Program Operates ............................................................... 124

a. Intervention Strategies............................................................... 124

b. Areas of Emphasis..................................................................... 128

c. Funding...................................................................................... 130

d. Setting Priorities......................................................................... 131

5. Accomplishments............................................................................... 132

6. Strengths and Weaknesses ............................................................... 133

a. Authorities.................................................................................. 133

b. Administrative Structure............................................................. 135

c. Fragmented Funding Structure .................................................. 136

d. Coordination with Other Agencies ............................................. 137

7. Major issues....................................................................................... 138

a. Funding Level ............................................................................ 138

b. National Policy for People with DD ............................................ 139

c. Support from ADD...................................................................... 139

8. Current Monitoring and Evaluation Activities ..................................... 140

9. Promising Practices ........................................................................... 142

a. Information and Referrals .......................................................... 142

b. Self-advocacy Skills................................................................... 142

c. Individual Litigation .................................................................... 142

10. Recommendations........................................................................... 143

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Chapter 5. Projects of National Significance .......................................................... 145

1. Introduction ........................................................................................ 145

2. Program Goals................................................................................... 146

3. History and Context ........................................................................... 147

4. How the Program Operates ............................................................... 147

5. Accomplishments............................................................................... 148

6. Strengths and Weaknesses ............................................................... 149

7. Major Issues ...................................................................................... 150

8. Current Monitoring and Evaluation Activities ..................................... 152

a. Monitoring and Technical Assistance ........................................ 152

b. Evaluation.................................................................................. 153

9. Promising Practices ........................................................................... 153

a. State of the States in Developmental Disabilities....................... 153

b. Residential Information System Project ..................................... 154

c. Access to Integrated Employment: National Data Collection 

on Day and Employment Services for Citizens with 

Intellectual and Developmental Disabilities ............................. 155

d. Partners in Policymaking ........................................................... 156

e. Home of Your Own .................................................................... 157

10. Recommendations........................................................................... 157

Chapter 6. Family Support........................................................................................ 159

1. Introduction ........................................................................................ 159

2. Program Goals................................................................................... 160

3. History and Context ........................................................................... 161

a. Expansion of Target Population................................................. 163

b. Growth in the Demand for Services ........................................... 163

c. Wider Variation in the Age of Caregivers ................................... 163

d. Increasing Cultural Diversity ...................................................... 163

e. Evolution of the Meaning and Structure of “Family” ................... 164

f. Change in Expectations.............................................................. 164

g. Increased Reliance on Medicaid................................................ 164

h. Addition of Other “Players” in the Service System ..................... 165

i. Increased Attention to Parent/Caregiver Training and Familyto-family Groups and Networks............................................... 165

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4. How the Program Operates ............................................................... 166

a. Demonstration Grants to States................................................. 166

b. Family Support 360 Programs ................................................... 166

c. National Clearinghouse and Technical Assistance Center on 

Family Support........................................................................ 167

5. Accomplishments............................................................................... 167

a. Demonstration Grants to States................................................. 168

b. Family Support 360 Programs ................................................... 168

c. National Clearinghouse and Technical Assistance Center on 

Family Support........................................................................ 169

6. Strengths and Weaknesses ............................................................... 169

a. Demonstration Grants to States................................................. 169

b. Family Support 360 Programs ................................................... 169

c. National Clearinghouse and Technical Assistance Center on 

Family Support........................................................................ 170

7. Major Issues ...................................................................................... 170

8. Current Monitoring and Evaluation Activities ..................................... 171

a. Demonstration Grants to States................................................. 171

b. Family Support 360 Programs ................................................... 171

c. National Clearinghouse and Technical Assistance Center on 

Family Support........................................................................ 171

9. Promising Practices ........................................................................... 171

a. Family Navigators Located with Local Programs Model ............ 172

b. Culturally Sensitive Mobile Services Model ............................... 172

c. Faith-Based Model..................................................................... 172

d. Leveraging Medicaid Waiver Funds........................................... 172

10. Recommendations........................................................................... 172

Chapter 7. Direct Support Workers.......................................................................... 175

1. Program Goals................................................................................... 177

2. History and Context ........................................................................... 177

3. How the Program Operates ............................................................... 178

4. Accomplishments............................................................................... 178

5. Strengths and Weaknesses ............................................................... 178

6. Major Issues ...................................................................................... 179

7. Current Monitoring and Evaluation Activities ..................................... 179

8. Promising Practices ........................................................................... 180

9. Recommendations............................................................................. 180

10 
Conclusion................................................................................................................. 181

1. Accomplishments............................................................................... 181

2. Strengths and Weaknesses ............................................................... 182

3. Structure ............................................................................................ 182

Bibliography .............................................................................................................. 183

Appendix A. Interviews........................................................................................... 189

Appendix B. Mission of the National Council on Disability ................................... 193

Endnotes.................................................................................................................... 195

List of Exhibits 

Exhibit 1.1. Timeline of Major Legislative and Policy Initiatives Affecting 

People with Developmental Disabilities, 1960–2010............................. 31

Exhibit 1.2. Funding Level for DD Act Programs, 1988–2008.................................... 1

Exhibit 2.1. Federal Funds Leveraged for UCEDD Research, 2008........................ 68

Exhibit 2.2. Distribution of Total Dollars Leveraged by UCEDDs, 2008 ..................... 1

Exhibit 2.3. Percentage of UCEDDs Reporting Work in Each of the Areas of 

Emphasis, Based on 2008 Annual Reports to ADD .............................. 71

Exhibit 2.4. Core Functions of UCEDDs .................................................................. 81

Exhibit 2.5. Average Funding Level per Center, 1988–2009 (in inflationadjusted 2009 dollars)* ........................................................................... 1

Exhibit 3.1. Evolution of the Councils....................................................................... 95

Exhibit 3.2. Actual and Inflation-adjusted# Appropriations for Councils, 1984–

2008........................................................................................................ 1

Exhibit 4.1. Intervention Strategies Used in Individual Casework PADD 

program, 2008* ................................................................................... 124

Exhibit 4.2. PADD Client Cases by Areas of Emphasis, 2008 ................................... 1

Exhibit 4.3. Sources of Funding for Protection and Advocacy ............................... 131

Exhibit 5.1. Projects of National Significance, 2009............................................... 151

11 
12 
Executive Summary 

Originally authorized in 1963 and last reauthorized in 2000, the Developmental 

Disabilities Assistance and Bill of Rights Act (DD Act, P.L. 106-402) addresses the 

changing needs and expectations of the estimated more than 4.7 million individuals with 

developmental disabilities (DD). Congress set out to establish a set of programs to 

improve the lives of people with DD; to protect their civil and human rights; and to 

promote their maximum potential through increased independence, productivity, and 

integration into the community. Today, these initiatives have evolved into University 

Centers of Excellence in Developmental Disabilities (UCEDDs), State and Territorial 

Councils on Developmental Disabilities (DD Councils), Protection and Advocacy for 

People with Developmental Disabilities (PADD), and Projects of National Significance 

(PNS). 

Over the past 40 years, the United States has witnessed a major transformation of what 

it means to have DD, moving from a medical model to a social model and involving a 

truly interdisciplinary approach to identifying needs and delivering supports and services 

in the community. Despite some identified gains in disability rights, people with DD 

continue to face considerable barriers to full integration, maximum independence, and 

self-determination. Furthermore, major programs funded by the Federal Government 

that affect the lives of people with DD have been established since the inception of the 

DD Act. Most significantly, the growth of the Medicaid program has shifted the system of 

supports for people with DD from one that is funded predominantly by state funds to one 

that is funded predominantly by Medicaid—with joint federal and state funding. 

Currently, there is no national policymaking or funding stream to create effective 

community-based alternatives to Medicaid-funded supports for people with 

developmental and related disabilities. Although the original intent of Congress was that 

the Administration on Developmental Disabilities (ADD) would span agencies that 

manage the key domains in the lives of people with developmental disabilities, today the 

power to affect DD programs is concentrated in the Centers for Medicare and Medicaid 

13 
Services (CMS), and DD policy is generally absent from other departments and 

agencies. 

This report addresses three basic questions: 

● What has the DD Act accomplished in the past 40 years? 

● What are the strengths and weaknesses of the current structure? 

● Is the current structure suited to address the current and future social and 

policy environment? 

The report is divided into seven chapters. Chapter 1 introduces the programs and 

reviews the issues that cut across the different types of grantees. Chapters 2 through 7 

describe and analyze each program type in more detail. The programs are presented in 

the order in which they were legislated, as follows: (2) UCEDDs, (3) DD Councils, 

(4) PADD programs, (5) PNS, (6) Family Support, and (7) Direct Support Workforce 

(DSW). 

To provide a comprehensive review of the DD Act, stakeholders representing consumer 

groups, advocacy organizations, experts, ADD staff, and self-advocates were 

interviewed. Focus groups were held, and documents produced by advocacy groups, 

researchers, and ADD grantees, annual reports, monitoring and technical assistance 

reports, and five-year plans were reviewed. A panel of stakeholders was consulted 

monthly. 

Major findings include: 

● The DD Act has evolved in a nation whose expectations, attitudes, policies, 

and services for people with disabilities have changed and continue to 

change. 

● Congress established a three-pronged approach, with each network partner 

(used in this report to mean UCEDDs, DD Councils, and PADD programs) 

14 
having a distinct role. The UCEDDs provide research to identify successful 

community-based alternatives and train practitioners and leaders. The DD 

Councils advocate for, and educate policymakers on, laws, regulations, and 

policies to enhance community living. The PADD program uses advocacy 

skills and legal avenues to enforce the laws. 

● The DD Act, in conjunction with self-advocates, families, other advocacy 

groups, state and local governments, and other stakeholders, has changed 

the way people with DD live. In many ways, it has been a remarkable change. 

● The majority of professionals, families, and self-advocates interviewed for this 

report concur that people with DD lack access to supports in the community 

to ensure adequate access to health care, housing, and employment. 

Significant issues remain in some areas, including transitions from school age 

to adulthood, use of assistive technology, and support for children with 

disabilities in foster care. 

● Most of the current challenges can be reduced to four underlying issues: the 

system is complex and fragmented; services vary dramatically by state; long 

waiting lists restrict access to services; and attitudes of the public are 

outdated. 

● The ADD is dislocated structurally within the Department of Health and 

Human Services (HHS) and from other federal agencies that develop and 

fund programs for people with DD. Most notably, within HHS CMS has the 

primary responsibility for services and supports to this population. In the 

Department of Education, the Office of Special Education and Rehabilitative 

Services funds and supports disability-related programs. ADD appears to lack 

influence beyond the DD Act programs themselves. 

● ADD is a small office within the HHS Administration on Children and Families 

(ACF). In addition to being overshadowed by larger programs within ACF and 

other disability funding programs within HHS (such as Medicaid), ADD is 

misplaced structurally in terms of focus and philosophy, resulting in low 

visibility and limited influence. Thus no entity is directing federal policy for 

15 
people with DD. Decisions are often deferred to the largest payer: the 

Medicaid system. 

● The perceived “quality” and “effectiveness” of PADD grantees, UCEDDS, and 

DD Councils varies dramatically among states. It is difficult to identify 

consistent performance standards for each program that would be relevant 

across all states. Compounding the challenge, the goals of the DD Act—

advocacy, capacity building, and systemic change—are inherently difficult to 

quantify. Furthermore, ADD does not have an effective system to identify 

underperforming grantees. 

● The DD Act programs have a relatively low level of funding to address a 

relatively broad mandate for a vulnerable population. In 2009, Congress 

appropriated $160 million to the DD Act. Adjusted for inflation, this 

appropriation has remained at the same level for the past 20 years. 

● Congress has recognized the value of the growing self-advocacy movement 

and has written it into the legislation in two places: First, the Act mandates 

that self- advocates be included as members of the DD Councils, on the 

Boards of the PADD agencies, and on the Consumer Advisory Councils for 

the UCEDDs. Second, the DD Act of 2000 requires DD Councils to support 

the establishment and strengthening of at least one statewide self-advocacy 

organization for individuals with DD in each State and Territory. The network 

partners and most self-advocacy organizations interviewed for this report 

would prefer that a separate source of additional funding be established for 

self-advocacy, instead of relying on DD Councils’ funding. 

Recommendations 

1.1 ADD should be reconfigured to assume important public policy development 

responsibilities and receive increased resources to equip it to accomplish this 

new role. In addition, the experience and skill sets of staff assigned to this 

16 
newly positioned agency should reflect its enhanced role in public policy 

development. 

1.2 Congress should require that the Councils review and comment on any 

proposed changes to the state Medicaid plan or waivers that affect individuals 

with DD. Any application from the state to CMS should be accompanied by a 

letter of support or a list of concerns for CMS’s consideration when deciding 

whether to approve the change to the plan. 

1.3 Congress should ask the Government Accountability Office to assess the 

effectiveness of ADD’s collaboration with appropriate federal agencies. The 

purpose is to determine the accessibility and benefits that generic and 

specialized federal programs, services, and supports are providing to 

individuals with DD. 

1.4 ADD, in partnership with the UECDD network, should develop a manageable 

and useful monitoring plan that yields data that accurately reflects the range 

of grantee activities and is useful for program administration and 

improvement. The data should enable ADD to identify underperforming 

grantees and develop an applicable series of interventions and actions. The 

National Core Indicators project could serve as a conceptual framework and 

model to be considered for adoption or adaptation for this activity. 

1.5 Congress should require ADD to identify, analyze, and synthesize trends in 

the needs, goals, activities, outcomes, and major initiatives of state 

DD Council plans, PADD state plans, and UCEDDs statements of work, and 

report the results of this analysis to Congress annually. 

1.6 The Secretary of HHS should require ADD to identify the barriers and 

challenges currently encountered by state DD Councils, PADD programs, and 

UCEDDs when implementing their state plan activities; and document the 

type, amount and cost, and effectiveness of technical assistance or support 

ADD has provided to enable the programs to overcome these challenges. 

17 
1.7 Congress should establish and maintain a dedicated funding source for 

technical assistance from organizations that have demonstrated successful 

experience with the workings and the context of each of the three network 

programs. 

1.8 ADD should revise the Developmental Disabilities Program Independent 

Evaluation to realign it with recommendations 1.4, 1.6, and 1.7. 

1.9 ADD should be staffed and resourced adequately so that it can be an active 

participant in mediating disputes between grantees and state agencies. 

1.10 ADD should coordinate the reapplication process so that a state’s 

DD Councils and UCEDDs are on the same five-year planning cycle. 

1.11 ADD should streamline reporting requirements related to collaboration and 

coordination among the network partners and other entities and emphasize 

the results of meaningful collaboration. 

UCEDDs 

2.1 Congress should review the funding level of university-affiliated programs that 

are similar to UCEDDs and increase the UCEDD appropriations to be 

consistent with these programs and at a level sufficient to meet DD Act goals. 

2.2 ADD should make other federal partners aware of UCEDD network resources 

for multistate research, evaluation, and information dissemination activities. 

2.3 The Secretary of HHS should establish a mechanism to coordinate federally 

funded research on DD and develop a research agenda. 

2.4 Congress should direct the Government Accountability Office to identify areas 

in which shortages of personnel restrict access to needed supports, measure 

the scope of current and future training needs in those areas, assess the 

existing training capacity, and identify options to expand the capacity. 

18 
State and Territorial Councils 

3.1 Congress should reaffirm the critical role played by the DD Councils in 

promoting the independence, productivity, and community integration of 

individuals with DD by raising the annual appropriations for DD Councils in 

order to improve their capacity for systems advocacy and demonstration 

activities. 

3.2 Congress should direct HHS, through ADD and the DD Councils, to launch a 

major new initiative to identify, analyze, and describe eligibility and funding 

inequities in the current Medicaid and state DD system, and to work 

collaboratively with major federal partners, state DD agencies, and state 

Medicaid agencies to eliminate these inequities. 

3.3 ADD should redesign the required state plan development and reporting 

format for DD Councils, which focuses on activities in nine areas of emphasis, 

into a more relevant format that better reflects the systemic change, capacitybuilding, and advocacy roles of DD Councils and the long-term nature of their 

work. 

Protection and Advocacy 

4.1 Congress should increase funding for the PADD program to meet the growing 

need for advocacy and legal services for people with DD. 

4.2 Congress should establish and authorize funding for a Protection and Advocacy 

program specific to the Individuals with Disabilities Education Act to be 

administered through the Department of Education. The new program will meet 

the critical need for legal advocacy related to education for children with DD. 

4.3 Congress should require that ADD and the other five agencies that fund the 

PADD systems streamline their reporting requirements and progress 

indicators so that scarce resources can be used for client services. 

19 
4.4 Congress, in the next DD Act reauthorization, should preserve legal and 

investigative authorities embodied therein. Specifically, the Act should 

(1) ensure that the authorities are not superseded by state or other federal 

laws, (2) clarify that all PADD grantees, regardless of whether they are state 

or nonprofit entities, have the authority to enforce their access authority in 

court against both public and private providers, and (3) oppose legislation that 

restricts the legal authority of the PADD program to represent residents of 

institutions. 

4.5 If a state does not comply with the DD Act section 143 to provide access to 

records, the HHS Secretary should hold ADD accountable for using its 

authority to support PADD grantees. Furthermore, the Secretary should 

request sufficient resources during the budget process to ensure that ADD 

can achieve its mandate. 

Projects of National Significance 

5.1 ADD should develop a transparent system for identifying PNS priorities that 

includes consumers, policymakers, and network partners. 

5.2 ADD should develop an evaluation approach to track the follow up and 

outcomes of PNS programs in order to identify their effectiveness and the 

value of PNS grants. 

5.3 ADD should fund additional data collection initiatives in areas such as health 

care access, direct care workforce issues, and educational outcomes. 

Family Support 

6.1 ADD should convene a meeting of experts, stakeholders, and government 

representatives to identify changes in family support services, policy, and 

philosophy that have occurred since the family support provision was written 

and recommend changes to Title II before the DD Act is reauthorized. 

20 
21 

6.2 Congress should provide direct funding of Title II to ensure that funds are 

used consistent with the intent of the Act, rather than funding family support 

through PNS. The funding should be at a level of at least $15 million. 

6.3 ADD should coordinate intra- and interagency groups with other federal 

partners that work on family support issues. 

Direct Support Workforce 

7.1 Congress should rewrite Title III to provide grants to states to develop, 

implement, and evaluate comprehensive workforce development programs to 

attract, retain, and train direct support professionals who provide support to 

individuals with DD. 

7.2 Congress should add recruitment, retention, and training of the direct care 

workforce to the areas of emphasis in the DD Act. 

7.3 ADD should develop and help fund partnerships with other federal agencies 

to create a unified approach to ensure that an adequate direct care workforce 

is available to serve the needs of people who are aging or have disabilities. 

Self-Advocacy 

8.1 The Secretary of HHS should convene a process to develop a thoughtful 

approach to supporting the fledgling self-advocacy movement that does not 

rely on the scarce resources of the DD network partners. The approach 

should include the input of self-advocates, DD network partners, the Centers 

for Independent Living, and other relevant stakeholders and potential 

partners. 
22 
CHAPTER 1. Overview and Cross-Cutting Issues 

1. Introduction 

Originally authorized in 1963 and last reauthorized in 2000, the Developmental 

Disabilities Assistance and Bill of Rights Act (DD Act, P.L. 106-402) addresses the 

changing needs and expectations of the estimated more than 4.7 million individuals with 

developmental disabilities (DD) (Braddock, Hemp, & Rizzolo, 2008). Congress set out to 

establish a set of programs to improve the lives of people with DD; to protect their civil 

and human rights; and to promote their maximum potential through increased 

independence, productivity, and integration into the community. Today, these initiatives 

have evolved into University Centers of Excellence in Developmental Disabilities 

(UCEDDs), State and Territorial Councils on Developmental Disabilities (DD Councils), 

Protection and Advocacy for People with Developmental Disabilities (PADD) groups, 

and Projects of National Significance (PNS). In the DD Act, Congress authorized two 

additional titles: Family Support and Direct Support Workers, designed to address 

specific issues facing the DD community. These two titles have yet to receive 

appropriations. 

Over the past 40 years, the United States has witnessed a major transformation of what 

it means to have DD, moving from a medical model to a social model and involving a 

truly interdisciplinary approach to identifying needs and delivering supports and 

services. Before the DD Act, professionals routinely advised parents and other relatives 

to institutionalize family members with DD. Today, more than 70 percent of people with 

DD who receive residential services live in small group homes or on their own in the 

community. Today, access to free appropriate public education is the right of children 

with DD rather than universal exclusion from public education. People with DD were 

once expected to die young, and expectations for their lifetime accomplishments were 

small. However, today their life expectancies approach that of the general population 

who graduate from high school, take advantage of continuing education or training 

opportunities, obtain jobs, engage as volunteers, and participate in the daily life of their 

23 
communities. Some of the same trends that improved the lifespan of people with DD 

also helped people with severe disabilities, who have functional similarities (e.g., 

traumatic brain injury, spinal cord injury), to attain new expectations for survival and life, 

including freedom, participation, and contribution. The rising levels of expectations for 

people with DD raise all boats; people with severe disabilities who are excluded from 

the DD definition (and Medicaid-funded community-based supports) have the same 

desire for freedom and full participation. Given current policy and program structures, 

however, it is easier to raise expectations and awareness than it is to serve needs. 

A variety of forces contributed to these changes. Though it is impossible to identify the 

full extent of the DD Act’s contributions, qualitative evidence suggests that in most 

states and for most types of services and supports, DD Act programs appear to have 

been influential. As new goals are attained, expectations continue to rise; the fact of life 

for DD Act programs is that their reach always exceeds their grasp. 

Despite significant gains, people with DD continue to face considerable barriers to full 

integration, maximum independence, and self-determination. Some of these barriers 

result from state programs and policies and the wide variation in financial commitment 

and supports from state to state. Other barriers result from national policies that are 

inconsistent with each other and with the current DD paradigm. 

Furthermore, major programs that affect the lives of people with DD have been 

established since the inception of the DD Act. Most significantly, the growth of the 

Medicaid program has shifted the system of supports for people with DD from one 

funded predominantly by the states to one funded predominantly by Medicaid, a 

federal/state partnership in which states decide what services to provide based on 

federal Medicaid reimbursement policies. This dramatic shift has given the Federal 

Government, through the Centers for Medicare and Medicaid Services (CMS), 

increased authority to shape DD policy. However, CMS is essentially a payment 

organization within the Department of Health and Human Services (HHS); although it 

has taken important steps to innovate the Medicaid program, it is not statutorily tasked 

with using the principles of the DD Act to develop policy or identify services. Many 

24 
innovations in CMS-funded support programs were identified or incubated by DD Act 

programs, but few funding streams exist except for Medicaid. There is no national 

policymaking or funding stream to create effective community-based alternatives to 

Medicaid-funded supports for people with DD and related disabilities. For comparison, 

within HHS, both the Administration on Aging (AoA) and the Substance Abuse and 

Mental Health Services Administration (SAMHSA) fund large state networks of 

community-based and volunteer-rich programs that help reduce reliance on Medicaidfunded individual supports in American communities. 

The original intent of Congress was that ADD would span agencies that managed what 

were seen as the key domains in the lives of people with DD. In the early years of the 

DD Act, these needs were expressed primarily under a “medical model,” mostly at 

National Institutes of Health (NIH, in the then Department of Health, Education and 

Welfare). As the expectations for people with DD grew under an emerging “social 

model,” bureaucratic changes worked against their thoughtful inclusion in national 

systems. When the U.S. Department of Education (DOE) was created in 1979 and split 

from HHS, only minor provisions were made for ADD to have a role through interagency 

coordinating functions. When the Social Security Administration (SSA) was created in 

1995, even fewer provisions were made. Outreach to these and other Departments, 

such as Labor, Housing, and Treasury, is tenuous at best, with the burden being 

assumed by the comparatively minuscule resources of ADD and dependent upon the 

leadership of the agencies. 

What is guiding the policy for this vulnerable population today? The United States 

spends $43.8 billion (Braddock et al., 2008) on Medicaid-funded supports for people 

with DD, and up to $100 billion per year on all programs affecting people with DD. Is 

that spending leading to the outcomes articulated in the DD Act? With a fiscal year (FY) 

2010 budget of $170 million (less than 0.5 percent of total DD spending), DD Act 

programs typically work across all domains at a state level, and are authorized to 

provide systems change, research and training, and legal advocacy. Yet the DD Act 

outcomes have no direct connection to the federal funding of services or program 

25 
design, and no direct policy influence or authority over them. With Congress expected to 

reauthorize the DD Act within the next few years, this is an opportune time to assess 

whether the DD Act is structured appropriately in relation to the new realities and 

expectations of people with developmental disabilities and their families, and the goals 

of the nation on their behalf. 

This report addresses three basic questions: 

● What has the DD Act accomplished in the past 40 years? 

● What are the strengths and weaknesses of the current structure? 

● Is the current structure suited to address the current and future social and 

policy environment? 

Our research revealed that the DD Act and its administration at the federal level have 

significant structural challenges, some of which reflect issues facing the disability 

services and support system as a whole. Our recommendations focus on politically 

feasible changes that can enhance the operation of the DD Act and outcomes for 

people with developmental disabilities. 

The report is divided into seven chapters. Chapter 1 introduces the programs and 

reviews the issues that cut across the different types of grantees. Chapters 2 through 7 

describe and analyze each program type in more detail. They are presented in the order 

in which the programs were created: (2) UCEDDs, (3) DD Councils, (4) PADD groups, 

(5) PNS, (6) Family Support, and (7) Direct Support Workforce. 

2. Methodology 

In an effort to provide a comprehensive review of the DD Act, NCD interviewed 14 

stakeholders representing consumer groups, advocacy organizations, and selfadvocates. We conducted three focus groups with directors of DD Councils, PADDs, 

and UCEDDs, and solicited comments at each of their annual conferences. We 

26 
contacted 25 experts; interviewed eight ADD staff; reviewed documents produced by 

advocacy groups, researchers, and ADD grantees; reviewed ADD’s biannual reports to 

Congress from 2000 to 2008, grantee annual reports from 2008, monitoring and 

technical assistance reports from 2005 to 2008, and five -year plans from 2006 to 2008; 

analyzed existing data; and consulted monthly with an advisory group of stakeholders 

and experts. Appendix A lists interviewees and focus group participants. 

When NCD uses the term “developmental disability” throughout this report, it refers to 

the definition in the DD Act: a severe, lifelong disability attributable to mental and/or 

physical impairments which manifest themselves before age 22 and are likely to 

continue indefinitely. They result in substantial limitations in three or more of the 

following areas: self-care, comprehension and language skills (receptive and expressive 

language), learning, mobility, self-direction, capacity for independent living, economic 

self-sufficiency, and ability to function independently without coordinated services. 

3. History and Context of the Act 

The content of the DD Act has evolved in a nation whose expectations, attitudes, 

policies, and services for people with disabilities have changed and continue to change. 

a. 1963–1975 

In 1963, people with DD faced almost complete exclusion from schools, communities, 

and sometimes even homes. Families were regularly counseled to place children with 

DD in state-run facilities (Intermediate Care Facilities for People with Mental 

Retardation, or ICF/MR), and were assured that their children would be cared for and 

protected. 

Unfortunately, the reality of the institutions often fell far short of the guarantee. Children 

and adults were housed in large state institutions where the per diem rate was $5 ($35 

in inflation-adjusted 2009 dollars). These facilities were often riddled with systemic 

27 
neglect and abuse. It was within this context that President John F. Kennedy promoted 

the Mental Retardation Facilities and Community Mental Health Centers Construction 

Act of 1963, establishing “University Affiliated Facilities” (later to become the UCEDDs) 

designed to ensure access to safe institutional facilities, advance scientific 

understanding, and promote professional education. While the Federal Government 

was providing funds to enhance institutions, parent groups such as the National 

Association for Retarded Children (NARC—later to become The Arc) and other groups 

had been providing private special-education classes and sheltered workshops for 

children and adults who were living with their families and began to insist that the state 

provide the appropriate services in the community. 

Dr. Elizabeth Boggs and Dr. Elsie Helsel were both mothers of sons with disabilities and 

members of NARC and United Cerebral Palsy, respectively. Together, they coined the 

term “developmental disability” to be inclusive of people with severe intellectual 

disabilities (then called “mental retardation”) and people who experienced severe 

functional limitations due to disabilities that were primarily physical or sensory in nature, 

such as cerebral palsy. Seeing that the majority of government funding had gone to 

institutional construction and improvement, they argued that government funding should 

be applied to a broad range of services and that parents and advocates should have a 

more substantial role in determining how DD funds were allocated. Rather than 

advocating for a significant amount of new funding, they advocated for the creation of 

an entity to coordinate the major streams of funding provided for people with DD. This 

movement led to creation of DD Councils and special projects (later to become projects 

of national significance), codified in the Developmental Disabilities Services and 

Facilities Construction Amendments of 1970. Strictly speaking, the 1970 Act was an 

amendment to the Facility Construction Act of 1963, but the scope had been broadened 

to the point that the 1970 legislation is sometimes considered the beginning of the 

current DD Act. 

Recognizing the need to protect people with DD from neglect and abuse in institutions 

and to guarantee their rights, Congress, in the 1975 reauthorization of the Act, 

28 
established the PADD program and introduced a basic bill of rights. Thus, by 1975 

Congress had created three programs that together were designed to, as Boggs said, 

“grant developmental potential, habilitation, and the right to optimal remediation to a 

group that had, in the past been relegated to custodial care” (Shorter, 2000). The vision 

of the three-pronged approach can be seen in the role of each network partner in the 

deinstitutionalization issue. UCEDDs provided research to identify successful 

community-based alternatives. The DD Councils promoted laws, regulations, and 

policies to implement UCEDD findings. The PADD program used advocacy skills and 

legal avenues to enforce the laws. 

b. 1975–present 

The DD Act, in conjunction with activities of self-advocates, families, other advocacy 

groups, state and local governments, and other stakeholders, has changed the way 

people with DD live. The social landscape in the United States has shifted from a place 

where people with DD were unheard and neglected to a country where far fewer people 

are relegated to institutional care, children with DD are in public schools, adults are 

living and in some cases working in the community, and a bourgeoning self-advocacy 

movement is demanding that people with intellectual and developmental disabilities 

have power over their own lives. In many ways, it has been a remarkable change. 

Similar processes of liberation for this population are occurring throughout the 

developed and developing world. 

Though most professionals, families, and self advocates agree that the quality of life for 

people with DD should be based on inclusion and participation in the daily life of their 

communities, a small and politically active segment believes that institutional care is the 

only safe alternative for their family members and that their right to choose this option is 

fundamental. They assess the community resources provided under their state’s 

Medicaid plan as inadequate to meet the needs of individuals with severe and profound 

intellectual disabilities often complicated by physical and sensory impairments. They 

see long waiting lists for community services and strongly support the entitlement to 

services that are guaranteed in the institutional programs. They legitimately point out 

29 
that community services are not held to the federal standards for Intermediate Care 

Facilities for People with Developmental Disabilities, are unavailable in all communities, 

and often take years to access. 

The majority of professionals, families, and self-advocates concur that people with DD 

lack supports in the community to ensure adequate access to health care, housing, and 

employment. Most of the current challenges can be reduced to four underlying issues: 

● The system is complex and fragmented: With myriad programs 

administered by different federal, state, and local agencies, people with DD 

and their families face a maze of fragmented, sometimes conflicting, and 

complex system of benefits and supports. 

● Services vary dramatically by state: State DD systems vary widely in terms 

of their financial commitment, their reliance on state institutions, and the 

character and quality of their community-based services. Although many best 

practices have been developed since the inception of the DD Act, they are 

rarely applied consistently across states and localities. In addition, eligibility 

for services is not portable across state lines. 

● Long waiting lists restrict access to services: An estimated 88,349 people 

with DD were on waiting lists for residential services in 2007 (Prouty, Alba, & 

Lakin, 2008). 

● Public attitudes are often outdated: Public attitudes, stereotypes, low 

expectations, and lack of understanding limit the ability of people with DD to 

integrate fully into the community. 

Changes in laws, regulations, and programs that make up the organizational landscape 

have both advanced and complicated the emerging social trends. The major legislative 

and policy initiatives, shown as a timeline in Exhibit 1.1, have expanded the funding and 

services for people with DD. However, these initiatives have led to incoherent federal 

policy toward people with DD. 

30 
Exhibit 1.1 

Timeline of Major Legislative and Policy Initiatives 

Affecting People with Developmental Disabilities, 1960–2010 

• President Kennedy releases the National Plan to Combat Mental 

Retardation.

• The Mental Retardation Facilities and Community Mental Health 

Centers Construction Act of 1963 creates a national network of 

research centers and university-affiliated facilities. 

1960–1965 

• The Social Security Act of 1965 establishes the Medicare and 

Medicaid programs. 

1966–1970 • The number of residents in large state institutions for people with 

mental retardation reaches its peak at 194,650* in 1967. 

• In 1971, amendments to Title XIX of the Social Security Act authorize 

Medicaid reimbursements for intermediate care facility (ICF) services. 

• The Social Security Amendments of 1972 establishes the 

Supplemental Security Income (SSI) program for the elderly and 

people with disabilities. 

• The Rehabilitation Act of 1973 revises earlier vocational rehabilitation 

legislation to emphasize serving people with severe disabilities and 

includes a nondiscrimination clause (see 1976–1980). 

1971–1975

• The Education for All Handicapped Children Act of 1975 mandates 

that children with disabilities ages 3–21 receive a free and appropriate 

education in the least restrictive environment based on an 

individualized education program and with due process guarantees. 

1976–1980 • Regulations implementing Section 504 of the Rehabilitation Act of 

1973 are signed in 1977, implementing the nondiscrimination clause 

that prohibits the exclusion of people with disabilities from any 

program or activity receiving federal financial assistance. 

• The Medicaid Home and Community-Based Services (HCBS) waiver 

program is established. 

1980–1985 

• The Civil Rights of Institutionalized Persons Act of 1980 (CRIPA) 

provides the Department of Justice (DOJ) with the statutory authority 

to bring cases to protect people living in institutions. 

31 
Exhibit 1.1 (cont’d) 

• 1986 Amendments to Education for All Handicapped Children Act 

provide funding to states to offer early intervention programs for 

infants and toddlers. 

1985–1990 

• The Technology Related Assistance for Individuals with Disabilities 

Act of 1988 establishes grant programs to encourage the 

development and distribution of assistive technology for people with 

disabilities. 

• The 1990 Americans with Disabilities Act prohibits discrimination 

based on disability. 

1990–1995 

• The 1992 Education for All Handicapped Children Act is changed to 

Individuals with Disabilities Education Act (IDEA) and language is 

added to support the transition from school to adulthood. 

• The Ticket to Work and Work Incentives Improvement Act of 1999 

establishes new programs and work incentives for SSI and Social 

Security Disability Income (SSDI) beneficiaries. 

1996–2000 

• In 1999, the U.S. Supreme Court holds in the case of Olmstead v. L.C.

that the unnecessary segregation of individuals with disabilities in 

institutions may constitute discrimination based on disability. 

• In 2001, the New Freedom Initiative includes a set of proposals 

designed to ensure that Americans with disabilities have the 

opportunity to learn and develop skills, engage in productive work, 

make choices about their daily lives, and participate fully in their 

communities. 

2001–2005 

• The No Child Left Behind Act of 2001 is designed to ensure that all 

children have a fair, equal and significant opportunity to obtain a highquality education and requires that states develop accountability 

systems. 

2005–2010 • The Social Security Administration modifies the regulations for the 

Ticket to Work and Work Incentives Improvement Act to enhance the 

ability of SSI recipients to benefit from the program. 

The DD Act emphasizes self-determination, productivity, and independence. However, 

certain other federal policies and laws, such as the following, do not adhere to these 

principles: 

32 
CMS – Medicaid 

Prior to the enactment of the Medicaid legislation, most services were funded and 

controlled by state governments. Medicaid now provides 78 percent of the total 

individuals with DD spending (Braddock et al., 2008). Although states have some 

flexibility to define services and quality within federally defined parameters, there 

continues to be an “institutional bias” in the Medicaid program despite significant 

revisions in federal Medicaid rules. Any Medicaid-eligible individual who meets the 

criteria for an “institutional level of care” is entitled to institutional services, but states 

can limit the number of recipients in home and community-based services. 

Department of Justice – Civil Rights of Institutionalized Persons Act (CRIPA) 

After identifying significant and systemic abuse and neglect in institutions in Texas and 

several other states, DOJ ordered the states to add resources to the existing institutions 

rather than shifting significant resources to non-institutional settings that are more in line 

with the principles of the DD Act (National Disability Rights Network, 2009). 

Social Security Administration – Social Security Disability Income (SSDI) and 

Supplemental Security Income (SSI) 

SSDI and SSI, the major cash assistance programs for people with DD and all other 

disabilities, contain significant work disincentives. Although the Ticket to Work and Work 

Incentives Improvement Act has reduced these disincentives, the fundamental structure 

of SSDI and SSI limit the ability of recipients to reach their maximum level of 

productivity and financial independence. The disincentives are especially prohibitive for 

people with strenuous long-term support needs (Stapleton, O’Day, Livermore, & 

Imparato, 2006). 

Developing a coherent federal policy requires the leadership of a federal entity with the 

authority and influence to bring federal partners to the table. Such an entity currently 

does not exist. The DD Act legislation codifies an important set of goals and rights for 

people with DD that could form the theoretical basis of a strong federal policy, but ADD 

33 
lacks the authority and influence to broaden the reach of these goals beyond the DD Act 

programs themselves. 

At the state level, DD Councils and other network partners have a limited ability to 

influence Medicaid policy to the extent necessary to redirect funds in a manner that 

meets the needs of the community. The DD network is expected to unify and direct 

disjointed organizations based on a philosophy of self-determination, independence, 

productivity, and inclusion in all aspects of community living. However, Medicaid, with its 

funding dominance, has essentially usurped this role. 

4. The DD Act 

The goal 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 selfdetermination, independence, productivity, and integration and inclusion in all facets of 

community life...” [Sect 101, DD Act of 2000]. To achieve this broad goal, the DD Act 

reauthorized three programs that operate in each state and territory (UCEDD, DD 

Councils, and PADD) and one program that promotes nationwide initiatives (PNS). In 

addition, the DD Act authorized two new programs (Family Support and Direct Support 

Workforce). This section provides a brief overview of these programs; Chapters 2 

through 7 contain full descriptions and analyses. 

a. State and Territorial Councils 

Each state, including the District of Columbia and the four U.S. territories, has a DD Council 

that addresses legislative, policy, programmatic, and fiscal issues through advocacy, 

capacity-building, and system change activities. Council members are appointed by 

governors, and the DD Act requires that more than 60 percent of Council members be 

people with DD or family members of a person with DD. In this way, the “customer” of the 

service system plays an important role in directing Council activities. Most DD Councils are 

34 
state or quasi-governmental agencies and thus could provide a credible voice in the 

policymaking process. Over the years, they have developed and tested some innovative 

service delivery models that have eventually been integrated into state systems. 

Despite their relevant strategic position and their charge to execute a vital planning 

function, they are given little direct authority and have little or no statutory relationship to 

the state agencies that operate DD programs or to their funding sources. In 1980, the 

General Accounting Office (GAO) noted that councils “rely on cajoling, encouraging, 

and persuading others” to provide for people with DD (U.S. General Accounting Office, 

1980). This situation has resisted change for close to three decades. Stakeholders 

report that, as a result, in some states DD Councils have substantial influence on policy, 

whereas in other states, they have been sidelined. 

b. Protection and Advocacy for People with Developmental Disabilities 

PADD programs in each state and territory, as well as one Native American program, are 

charged with protecting the legal and human rights of individuals with DD through legal 

advocacy and legal action. PADD grantees provide legal representation in individual and 

class action lawsuits, investigate cases of abuse and neglect, educate policy makers, and 

disseminate information. They work with individuals on specific issues (individual advocacy) 

and use their legal skills to address system wide issues (systemic advocacy). 

PADD programs have been an integral part of the deinstitutionalization process, as well 

as aiding parents advocating for appropriate education of their children under the IDEA. 

As a result of their investigative rights and legal standing, PADD grantees can 

effectively compel agencies to provide services when benefits have been denied or 

rights of people with DD have been violated. Although actual court cases are filed only 

after other approaches have failed, PADD grantees report that the potential for legal 

action and the ability to collect restricted information is often enough to force delinquent 

agencies to change (U.S. Government Accountability Office, 2003). 

35 
The resources allocated to the PADD program and PADD grantees are too scarce to 

meet the demand of all potential clients. As a result, each grantee and its governing 

board must choose how to divide resources between individual and systemic advocacy 

and develop a set of priorities that define who they will serve and how. Unfortunately, 

this often leaves families and individuals with no one to advocate on their behalf. 

c. University Centers for Excellence in Developmental Disabilities 

The DD Act funds 67 UCEDDs to perform interdisciplinary academic research, prepare 

students and fellows for work in fields related to DD, disseminate information, and 

provide model direct service programs. The university affiliations put UCEDDs in a 

unique position to conduct research, train future leaders, and disseminate information 

that is seen as legitimate and unbiased. Since the inception of the DD Act, the UCEDDs 

have been instrumental in developing interdisciplinary approaches to diagnosis, service 

delivery, and DD research. 

Each UCEDD receives a core grant from ADD that is used as a platform to garner 

grants from other federal, state, and private sources. As a result, the size and activity of 

UCEDDs vary dramatically. The practice of leveraging the DD grant into other funding 

allows the UCEDD to address the needs of people with DD in a far more 

comprehensive manner than they could with the DD grant alone. However, the process 

may restrict the ability of UCEDDs to respond directly to the needs of the community, 

and leveraged funding is naturally not accountable to the principles of the DD Act. 

d. Projects of National Significance 

PNS is a discretionary grant program designed to focus on and quickly respond to 

emerging areas of concern. This program is intended to support innovative and practical 

solutions as well as collect data to measure the status and progress of people with DD. 

PNS funds also support training and technical assistance activities for the other grant 

programs. 

36 
Stakeholders consistently pointed to several outstanding projects over the decades, 

including three data collection and dissemination projects that have provided vital 

information used by advocates, policymakers, and researchers to understand trends in 

community living, employment, federal and state government expenditures, and other 

activities. 

Two factors limit the ability of the PNS program to meet its full potential. First, Congress 

often includes new appropriations language each year, directing PNS resources on a 

year-to-year basis—often to Family Support, significantly limiting the funds available for 

other projects or approaches. Second, even for projects that show promise with shortterm PNS funding, there is often no other funding available for continued exploration or 

implementation.

e. Family Support Programs 

Title II of the DD Act authorizes the Family Support Program to promote and strengthen 

the implementation of comprehensive state systems of support services for family 

members of people with DD. Although line item funds were not allocated to this program 

until 2008, when the appropriation was only $1.7 million out of a $15 million 

authorization, Congress increased the appropriation for PNS as early as 1998 and 

directed ADD to use the additional funds for Family Support initiatives consistent with 

Title II. PNS expenditures on these activities are frequently encouraged by 

congressional appropriations language. 

In 1999, this directive led ADD to provide small demonstration grants to states, giving 

the states wide latitude in designing and developing initiatives. In 2003, ADD replaced 

these grants with a multiyear initiative to establish a limited number of Family Support 

360 Programs, each of which was required to establish a one-stop center and serve at 

least 50 families per year. Most experts and stakeholders noted that Family Support 360 

programs were inconsistent with the statewide systems change intent of Title II and 

described the program as anywhere from “wonderful for the people it served” to “an 

unconscionable waste of money.” 

37 
f. Direct Support Workforce 

Title III of the DD Act authorized funds for two Direct Support Workforce initiatives to 

address the shortage of workers in the field. The title authorized $800,000 per year to 

develop a Web-based training course for direct support workers and $800,000 per year 

to fund scholarships for direct support workers. To date, Congress has never 

appropriated the funds for the program. However, ADD has used PNS funds to 

establish an online training course for direct support workers, the College of Direct 

Supports, which has shown significant promise and is now used in agencies and states 

across the country. 

5. Position of the Federal Office 

ADD, the federal office tasked with managing the DD Act programs, is structurally 

dislocated from the federal agencies that develop and fund programs for people with 

DD, most notably CMS in HHS and the Office of Special Education and Rehabilitative 

Services (OSERS) in DOE. In addition, ADD has few resources and little influence 

compared to an agency such as SAMHSA in HHS, which focuses on people with mental 

health needs and has a charge similar to that of ADD’s focus on people with DD, but an 

entirely different structure. 

ADD is a small administration ($187 million, of which $170 million is used to fund DD 

Act programs) within the $52 billion Administration on Children and Families (ACF), part 

of the $880 billion HHS FY 2010 budget. In addition to being overshadowed by larger 

programs within ACF and other disability funding programs within HHS (such as 

Medicaid), ADD is structurally misplaced in terms of focus and philosophy. The mission 

of ACF is to provide “national leadership and direction to plan, manage, and coordinate 

the nationwide administration of comprehensive and supportive programs for vulnerable 

children and families” (ACF, 2007), but the largest population of people with DD is now 

adults, not children. The placement of ADD has resulted in low visibility and limited 

influence for the Administration that should provide federal leadership on DD-related 

38 
issues. In fact, when members of other agencies and offices working on DD issues such 

as the Department of Labor (DOL), CMS, and the HHS Office of Disability, were 

interviewed for this report, none were concerned with ADD, nor did they see it as vital to 

the policymaking process. 

Because ADD is not integral to important programmatic and policy decisions at either 

the state or federal levels, no agency is directing federal policy for people with DD. 

Decisions are often deferred to the largest payer: the Medicaid system. Although CMS 

has made significant modifications to federal Medicaid policy in the past several 

decades in an attempt to keep pace with the evolving DD paradigm, DD policy is not its 

core competency. CMS does not undertake policy initiatives for people with DD in the 

same way that the AoA or SAMHSA can undertake for people who use mental health or 

substance abuse supports. CMS does not fund a network of state administrators as 

these programs do. 

Compounding its inadequate stature within the Federal Government, ADD has only 17 

people administering more than 350 grants and contracts. As a result, the staff has few 

resources available for activities beyond basic grants management. For example, the 

agency has not had a strategic plan for more than 10 years. Nor has it developed final 

administrative rules for implementing the DD Act. The notice of proposed rulemaking 

was not released until 2008 (Federal Register, Notice of Proposed Rulemaking, 2008). 

The disassociation from other federal agencies, coupled with the lack of authority and 

resources, has damaging consequences for both the DD community and DD Act 

grantees. Several recent initiatives illustrate the low visibility and influence of ADD: 

● SAMHSA and CMS have entered into an interagency agreement to undertake 

two joint initiatives per year. ADD and CMS have no such agreement. 

● AoA and CMS have been collaborating since 2003 to develop a system of 

single points of entry into the long-term care system for older adults and 

people with disabilities through the Aging and Disability Resource Centers. 

ADD has not been involved in this initiative. 

39 
DD Act grantees report that the absence of interagency coordination at the federal level 

makes it more difficult to establish relationships at the state level. 

ADD needs substantive responsibility and strong partnerships with CMS, state 

agencies, DOJ, Medicaid, and others in order to provide the DD community with a clear 

and unified strategic plan and philosophy, and it needs new authority to engage the 

network of state directors of DD services in technical assistance networks and policy 

initiatives. 

6. Monitoring and Evaluation 

a. Accountability and Oversight 

Interviews with stakeholders and experts clearly suggest that the perceived quality and 

effectiveness of PADD grantees, UCEDDS, and DD Councils varies dramatically among 

states. Recognizing that the terms “quality” and “effectiveness” take on different 

meanings for each interviewee, it is apparent that some grantees achieve the vision of 

the DD Act while others flounder. 

Because the discretionary grants (UCEDDs) are not openly competed, there is no 

weeding-out process whereby a grant may be awarded to a competitor that can prove in 

an application that it can be more effective than the current grantee. As a result, federal 

oversight is critical to maintaining a strong network. The orientation of formula grants 

(DD Councils, PADDs) is dependent on the will of each state’s governor. 

Because each program operates in a different social and policy environment and the 

needs of the state and the receptiveness of government officials and the public to 

change may differ, it is difficult to identify consistent performance standards for each 

program that are relevant across all states. Compounding the challenge, the goals of 

the DD Act—advocacy, capacity building, and systemic change—are inherently difficult 

40 
to quantify compared with programs that provide direct service where the number of 

people served can be used as a rough gauge of whether the program is touching lives. 

ADD also struggles with some of the same issues that face other government agencies 

that run programs whose outputs and outcomes are difficult to quantify. It does not have 

an effective system to identify underperforming grantees. In addition, to the extent that 

ADD is aware of underperforming grantees, the office has few mechanisms to help 

strengthen them, to condition future funding on specific improvements, or to eliminate 

funding. ADD does offer technical assistance on grant requirements, but interviewees 

report that ADD is not currently equipped to provide programmatic evaluation and 

oversight. Rather, it functions as a regulatory body that ensures grantees are following 

the grant regulations (e.g., reporting and budgeting). As a result, there is a lack of 

accountability and coherent strategy within the DD network. 

The major programs are evaluated using two tools: annual performance reports and the 

Monitoring and Technical Assistance Review System (MTARS). On the whole, the 

monitoring process can be administratively burdensome to the grantee. Though the 

monitoring process can provide ADD with a substantial amount of documentation that 

can indicate whether the grantee is in compliance with laws and regulations, it provides 

little information that ADD can use to assess the grantee effectiveness or compare the 

grantee against any type of performance standard. 

In the annual performance reports, grantees are required to report a substantial amount 

of qualitative information about their programs as well a small number of quantitative 

measures. Unfortunately, for the most part ADD does not analyze the qualitative data to 

identify grantee strengths and weaknesses, and the quantitative data (which ADD 

displays on its Web site) lacks the validity and reliability to be used as a monitoring tool. 

Grantees had particularly harsh criticisms of the MTARS. The MTARS brings together 

peers, consumers, and ADD staff to comprehensively review all network grantees 

(UCEDDs, DD Councils, and PADDs) in two to five states per year. The review includes 

a site visit, a public forum to elicit local stakeholder comments, and a document review. 

41 
ADD established the MTARS to monitor individual grant programs and the collaboration 

between programs, address areas where grantees may benefit from technical 

assistance, and identify innovative practices that may benefit other grantees. This 

process is designed to evaluate the program in the context of its environment and 

network partners and provide feedback that will enhance its functioning and impact. 

However, grantees argued strongly that the MTARS is administratively burdensome, 

leans heavily toward compliance monitoring that can be accomplished using less timeconsuming methods, does not lead to quality improvement, and does not link any useful 

information to the success or management of the programs in any significant way. 

b. Outcomes 

The ultimate goal of the DD Act programs is to enhance the quality of life for people with 

DD through increasing participation in the community; control over resources; informed 

choice; access to employment, housing, health care, and transportation; and freedom 

from abuse and neglect. Qualitative and quantitative measures clearly indicate that, on 

average, people with DD have made progress in these areas since the inception of the 

DD Act. However, it is difficult to assess the direct impact of the Act for several reasons: 

● Multiple forces contributed to these changes, and it is not possible to tease 

out the impact of any one force. 

● DD Act programs impact the entire DD system and community, in contrast to 

direct services that affect a defined set of individuals. Thus, outcomes are 

inherently difficult to measure. 

● Specific outputs of some DD Act programs (such as research, innovative 

ideas, and legal arguments) were adopted by policymakers and others to 

empower consumers or change the system. However, no system is in place 

to track the long-term impact of specific outputs. 

The dearth of quantitative outcome data has hampered our ability to present evidence 

on the success of DD Act programs. In the absence of outcome data, we relied on the 

42 
opinions and insights of stakeholders and experts who have been involved with the 

system for many of the past 40 years to identify program contributions that enhance the 

lives of people with DD. (Chapters 2 through 7 present available outcome data and 

stakeholder perceptions.) 

Two sets of tools, the annual performance measures and the proposed Developmental 

Disabilities Program Independent Evaluation (DDPIE), are designed to evaluate the 

impact of the DD Act programs as a whole. 

c. Performance Measures 

The Government Performance Results Act of 1993 (GPRA) is intended to quantify goals 

for each federal program and require programs to report annually on progress toward 

those goals. The GPRA goals for DD Act programs under GPRA are to— 

● Increase the percentage of individuals with DD reached by the Councils who 

are independent, self-sufficient, and integrated into the community. (DD 

Councils) 

● Increase the number of individuals with DD reached by the Councils who are 

independent, self-sufficient, and integrated into the community, per $1,000 of 

federal funding to the Councils. (DD Councils) 

● Increase the percentage of trained individuals actively working to improve 

access of individuals with DD to services and supports. (DD Councils) 

● Increase the percentage of individuals who have their complaint of abuse, 

neglect, discrimination, or other violation of human or civil rights corrected, 

compared with the total number of individuals assisted. (PADD groups) 

● Increase the percentage of individuals with DD receiving the benefit of services 

through activities in which professionals were involved who completed UCEDDs 

state-of-the-art training within the past 10 years. (UCEDDs) 

43 
In theory, these performance measures quantify important program outcomes. 

However, with the exception of the measure for the PADD program, the data needed to 

estimate the value for each measure carries so much statistical uncertainty that it is not 

useful. Because of the uncertainty, without information from direct services and 

supports authorizations it would be impossible to see any meaningful year-to-year (or 

even decade-to-decade) changes that could be attributed to real changes in program 

performance, rather than to random variations in the measure or changes in reporting 

methodology. 

d. Developmental Disabilities Program Independent Evaluation (DDPIE) 

In response to the Office of Management and Budget (OMB) Performance Assessment 

Rating Tool (PART) assessment of the DD Act programs in 2005, which criticized ADD 

for failing to contract for independent evaluations to measure the effectiveness of its 

program and policies and promote accountability to the public, even though the program 

performance was scored as “adequate,” ADD contracted with Westat, a large private 

research corporation, “to determine the impact that DD programs (and the collaboration 

among programs) are having on people with DD, family members, state systems, and 

service providers” (Elinson et al., 2008). 

Westat undertook a three-year initiative to identify indicators, develop evaluation tools, and 

pilot-test the tools in three states. To identify appropriate indicators, the evaluators 

consulted with a variety of experts and stakeholders including an advisory panel, working 

groups from each of the DD network program types, state programs, validation panels, and 

the public. Through this comprehensive process, the research team identified the 

processes, short- term and long-term outputs, and outcomes for the three network partners. 

Westat created between 47 and 52 indicators for each program. The indicators 

generally reflect the type of work that each grantee should perform and thus the type of 

outputs and outcomes that should be addressed in this type of evaluation. Westat 

developed a research protocol that includes qualitative and quantitative data collection. 

It includes interviews with grantee staff, council and board members, consumer advisory 

44 
committee members, and others who have received services or participated in activities 

supported by DD Network programs. Given the resources required to collect data and 

perform interviews, the final evaluation will be based on a random sample of grantees 

rather than every grantee. As a result, the evaluation will not be able to, nor was it 

intended to, identify underperforming entities. 

The evaluation has several limitations: 

● Many of the Westat indicators are not conducive to quantitative 

measurement. Thus, in the planned second stage of the process, Westat 

intends to ask the grantees to provide examples for each indicator. The 

process will yield systematic anecdotal evidence of the strengths of DD Act 

programs but will not yield the quantifiable outcomes that national policy 

makers seek. 

● The process does not evaluate two very important aspects of the DD Act 

programs: the role of ADD and the PNS programs. 

● The evaluation protocol details a data collection strategy that is labor 

intensive and expensive for both the evaluator and the network partners. The 

cost of the data collection is disproportional compared to the total 

authorization of the DD Act. 

● The network partners have not “bought into” the process. They expressed 

concern that much or all of the information that Westat will be collecting (1) is 

already available under current reporting requirements, (2) will be unnecessarily 

time-consuming for the grantee, and (3) will not yield useful results. 

Despite these limitations, the DDPIE may be an important initiative. While researching this 

report, NCD found substantial anecdotal evidence about both the importance of the DD Act 

programs in enhancing the lives of people with DD and the issues facing the program. 

However, there is a dearth of data to substantiate these anecdotes quantitatively or 

systematically. As a result, it seems clear that a full-scale evaluation is warranted. For 

example, anecdotal evidence suggests that some DD Act grantees are not performing at 

45 
an acceptable level. However, currently no data or methods exist to identify whether these 

entities really are underperforming or whether they face unrealistic or inaccurate 

expectations of some citizens, or whether underperforming entities make up a very small 

portion or a significant portion of current grantees. In any case, the question may be moot if 

ADD is without authority and resources to remediate underperformance. 

The strengths of the DDPIE include the following: 

● Data will be robust enough to identify substantial issues facing the program. 

● The DDPIE, with three years of planning completed, is the only approach that 

has been developed and is ready for implementation. 

Because it is so resource intensive, this type of evaluation is unlikely to be done 

regularly. However, ADD will likely learn things from the evaluation that will help 

strengthen the current monitoring and evaluation approach. The process can identify 

key data elements to translate into performance standards that can be used in ADD’s 

periodic monitoring processes. NCD initially recommended revisions to the current 

DDPIE (see Recommendation 1.8), but the revisions will have to be considered for 

future evaluations; according to ADD, the current DDPIE was funded with prior-year 

funds and cannot be revised for the current evaluation. 

Another potential good source for assessing outcomes is the National Core Indicators 

(NCI), a systematic approach to performance and outcome measurement for state DD 

programs. The current performance indicators include approximately 100 consumer, family, 

systemic, cost, and health and safety outcomes that are important to the overall 

effectiveness of state developmental disabilities agencies. Each indicator is associated with 

a source from which the data is collected. These include consumer surveys (e.g., 

empowerment and choice issues), family surveys (e.g., satisfaction with supports), provider 

surveys (e.g., staff turnover), and state systems data (e.g., expenditures, mortality). The 

NCI also provide information for many of the desired outcomes stated in the Home and 

Community-Based Services Quality Framework. The NCI could serve as a model for the 

46 
development of a truly outcome-based systematic look at the effectiveness of the programs 

that are of concern to DD Act partners (http://www.hsri.org/nci/). 

e. Previous Evaluations 

In 1980, the General Accounting Office examined the operation and administration of 

the four programs funded under the DD Act. It found the following (U.S. General 

Accounting Office, 1980): 

All of these programs have funded projects and activities to help people with 

developmental disabilities. However, the Department of Health, Education, and 

Welfare (HEW) had not developed criteria or standards to measure program 

performance or made any in depth reviews of the programs for overall impact on the 

conditions of the people they were meant to serve. 

The State Formula Grant Program (now State and Territorial Councils) is particularly 

burdened. Many of its problems are so fundamental and pervasive that major 

improvements are needed, beginning with a clear congressional definition of what this 

program should accomplish. 

Although the State Protection and Advocacy Program is too new to gauge its impact, 

early indications are that this program offers new hope for people with developmental 

disabilities. This program contains influence—a key ingredient that is lacking in the 

Formula Grant Program. However, the program also has some problems, not the 

least of which is lack of funds. 

For the most part, the Special Projects Program (now projects of national significance) 

is not unique or special. Contrary to program goals, many projects were strikingly 

similar to projects funded under the Formula Grant Program (DD Councils). This was 

particularly true of regional projects—many of which were narrowly scoped, not 

designed for widespread application or replication, and were providing conventional 

services instead of developing unique or innovative techniques for service delivery. 

The main problems with the University-Affiliated Facilities Program (now UCEDDs) are 

that it is funded from numerous sources with no fixed pattern, has vague mission 

statements, and has varying and incompatible guidelines. 

All four programs need closer monitoring and more specific direction from HEW (now 

HHS) if they are to be effective and viable forces in improving the conditions of people 

with developmental disabilities. 

Some of these findings are remarkably similar to the findings of this report. 

47 
7. Other Issues That Affect All Programs 

a. Collaboration 

Each of the network partners has its own role and is staffed with different types of 

expertise. In theory, effective collaboration between the partners would allow them to 

maximize their impact by coordinating their activities and harnessing the power of their 

different roles, perspectives, expertise, and strategies. 

The DD Act’s broad mandate identifies many issues in need of attention, so each network 

partner within a State may be focusing on different issues. The Act was intended to 

encourage and facilitate intentional cooperation between network partners by mandating 

that PADDs and UCEDDs be represented on DD Councils; that PADDs and DDCs sit on 

the UCEDD advisory committees; and that PADD boards may include UCEDDs, DDCs, 

and self-advocacy organization representation. The Act even specifies that the UCEDD 

five-year plan be “consistent with, and to the extent feasible, complement and further” the 

goals of the DD Councils and PADDs. The current mandates, however, do not ensure 

meaningful and productive collaboration. One barrier to collaboration is the staggered 

planning cycles. Both DD Councils and UCEDDs are on five-year planning cycles, but the 

cycles do not necessarily coincide. A DD Council planning document could be as much as 

four years old before it is considered by a UCEDD for its plan. 

ADD has increased its emphasis on promoting collaboration. Currently, ADD does not 

have a specific definition of collaboration; however, network partners report that the ad 

hoc definition is the number of times the network partners meet in person or on the 

phone. Executive directors of all three network partners expressed that this is a narrow 

view of collaboration that yields neither true collaboration nor enhanced outputs and 

fails to capture many types of strategic collaborations that do occur. Consider, for 

example, the issues of DD student discipline in schools: PADDs may be developing 

lawsuits to create important legal precedents while the DD Council is meeting with 

special education directors to bring attention and publicity to the issue and UCEDDs are 

48 
training future teachers in positive behavioral support. If the groups do not actually 

meet, the network partners believe that ADD does not recognize the value of this type of 

strategic coordination. Equally if not more important than collaboration among network 

partners is the collaboration among the network and the state DD office; state and 

federal education, Medicaid, housing, and transportation agencies; and professional 

and advocacy groups. These relationships and alliances are essential to promote 

system change. 

b. Funding Level 

DD Act programs have a relatively low level of funding to address a broad mandate for a 

vulnerable population. In 2010, Congress appropriated $170 million to the DD Act. Adjusted 

for inflation, this appropriation has remained at about the same level for the past 20 years. 

However, the distribution between programs changed; funding for the UCEDD and PADD 

program increased slightly, while funding for the state DD Councils declined (Exhibit 1.2). 

Many stakeholders argued that the level of funding for the network partners is far below 

what is required for them to fulfill their mandates as defined in the DD Act. 

c. Areas of Emphasis 

In each reauthorization of the DD Act, Congress modifies the focus of the programs by 

identifying specific areas in which the network partner should work. The DD Act of 2000 

identifies nine “areas of emphasis”: child care, education, employment, health, housing, 

quality assurance, recreation, transportation, and other formal/informal community 

supports. The areas of emphasis are meant to direct the efforts of the programs and to 

provide a convenient way to categorize initiatives and measure progress. 

These areas are broad enough to offer the network partners the ability to respond to 

almost any need identified in their planning processes. Nevertheless, stakeholders 

interviewed for this report identified important issues facing people with DD that are not 

reflected in the current areas of emphasis, including transition from school to adulthood 

and postsecondary education, aging caregivers, integration into the generic service 

49 
Exhibit 1.2 

Funding Level for DD Act Programs, 1988–2008 

(in inflation-adjusted 2008 dollars) 

Source: Author’s calculations based on UCEDD appropriations reported in Graney, 2001; Sommers, 

2008; and the Consumer Price Index for All Urban Consumers reported in Bureau of Labor Statistics 

(BLS), 2009 

Note: The steady increase in funding for UCEDDs compared with that for other partners does not 

represent the funding trajectory for individual UCEDD grantees. While the number of State Council 

and PADD grantees remained constant over time, the number of UCEDDs increased from 41 in 1988 

to 67 in 2009. Thus, the individual UCEDD grantees saw their inflation-adjusted funding decline 

steadily between 1988 and 2000 and then recover to the 1988 level by 2008 (see Chapter 2). 

system, direct care workforce, access to technology, abuse and neglect, public 

attitudes, and empowerment/self-advocacy. As the areas of emphasis became more 

expansive and inclusive of all issues that affect people with DD, they became less 

effective as a means to focus the efforts of the resource-limited network partners and 

more of a categorization and reporting device. This tension between flexibility and focus 

runs throughout the DD Act and its implementation. 

50 
8. Self-Advocacy 

Self-advocacy is based on the concept that all people with intellectual or developmental 

disabilities can and should have as much control as possible over their lives, and should 

be supported to speak on their own behalf. In the past 30 years, this concept has grown 

into a worldwide grassroots civil rights movement in which groups of people with 

disabilities “work together for justice by helping each other take charge of our lives and 

fight discrimination. It teaches us how to make decisions and choices that affect our 

lives so we can be more independent. It teaches us about our rights, but along with 

learning about our rights, we learn about our responsibilities. The way we learn about 

advocating for ourselves is by supporting each other and helping each other to gain 

confidence to speak out for what we believe in” (Self Advocates Becoming Empowered, 

1991, from Hall, undated). 

Some self-advocacy groups are national or statewide in scope and have local chapters. 

Others are more local or informal in nature. Most groups meet regularly to share their 

experiences, offer support, learn about their rights, and learn to speak up and advocate 

for themselves, and advocate on behalf of the group in legislative and policy arenas. 

Congress has recognized the value of the growing self-advocacy movement and has 

written it into the legislation in two places. The DD Act mandates that self-advocates serve 

as members of the State and Territorial Councils and on the Boards of the PADD agencies, 

as well as on the Consumer Advisory Councils for the UCEDDs. The Act also requires 

State and Territorial Councils to support the establishment and strengthening of at least 

one statewide self-advocacy organization for individuals with DD in each state. 

Self-advocates report that the three DD network programs have provided training, 

logistical, administrative, or financial support for the self-advocacy movement. The 

network partners would prefer that an additional source of funding be established for 

self-advocacy so that supporting the movement does not put additional strain on their 

already limited budgets and so that self-advocacy groups can attain and maintain their 

51 
independence. Many stakeholders interviewed for this project support the addition of a 

title that funds self-advocacy. However, they identified several important questions that 

should be addressed prior to the inclusion of a new title in the DD Act: 

● Does the self-advocacy movement include those with the most significant 

disabilities (whom the DD Act is intended to serve) or is it structured for 

people with fewer support needs? Clearly, the concept of self-advocacy—that 

people with DD should be given maximum choice and control over their own 

lives and supported in communicating these choices—is applicable to all 

people. The question is whether the movement is, or can be, structured 

inclusively. Several interviewees were concerned that including a selfadvocacy title would weaken the severity aspect of the DD definition in the 

Act, create broad new responsibilities without commensurate funding, and 

blur the distinction between intellectual and developmental disabilities. 

● Does the self-advocacy movement have the institutional capacity to apply for 

and accept federal grants with the report writing and financial management 

requirements that accompany those grants? If not, what kinds of supports are 

needed to ensure that these types of requirements are met? 

● What kinds of activities should be funded and what funding approach can 

require federal accountability while permitting the flexibility that the movement 

needs? 

● Is the DD Act the appropriate funding source for this movement, or would it be 

better placed within the independent living movement, funded by the Office of 

Special Education and Rehabilitative Services in the DOE, and based on a 

similar approach of peer-to-peer effort? 

The rise of the self-advocacy movement has brought an emphasis on personal choice 

and self-determination that impacts not only what decisions regarding DD are being 

made, but also how those decisions are made, and it has become an important force for 

change. It should be funded in a way most apt to ensure its success. 

52 
9. Recommendations 

ADD should have a leadership role in developing and promoting public policy and 

programs for people with DD at the federal level based on the tenets embodied in 

the DD Act. Currently, ADD lacks visibility, influence, and authority. 

1.1 ADD should be reconfigured to assume important public policy development 

responsibilities and receive an increase in resources to equip it to accomplish 

this new role. In addition, the experience and skill sets of staff assigned to this 

newly positioned agency should reflect its enhanced role in public policy 

development. 

1.2 Congress should require that the DD Councils review and comment on any 

proposed changes to the state Medicaid plan or waivers that affect individuals 

with DD. Any application from the state to CMS should be accompanied by a 

letter of support or a list of concerns for CMS’s consideration when deciding 

whether to approve the change to the plan. 

1.3 Congress should ask GAO to assess the effectiveness of ADD’s collaboration 

with appropriate federal agencies to determine the extent to which individuals 

with DD are able to access and benefit from the generic and specialized 

federal programs currently providing services and supports for them. 

The administrative oversight of the DD Act programs should be strengthened. 

Currently, ADD requires grantees to report on a plethora of quantitative and 

qualitative measures. However, ADD does not use the data to effectively monitor 

grantees, hold grantees accountable, or develop national policy. 

1.4 ADD, in partnership with the DD network, should develop a manageable and 

useful monitoring plan that yields data that accurately reflects the range of 

activities of the grantees and is useful for program administration and 

improvement. The data should enable ADD to identify underperforming 

grantees and develop applicable interventions and actions. The NCI project 

53 
could serve as a conceptual framework and model to be considered for 

adoption or adaptation for this activity. 

1.5 Congress should require ADD to identify, analyze, and synthesize trends in 

the needs, goals, activities, outcomes, and major initiatives of DD Council 

plans, PADD state plans, and UCEDDs statements of work, and report the 

results of this trend analysis to Congress annually. 

1.6 The Secretary of HHS should require ADD to identify the barriers and 

challenges currently encountered by DD Councils, PADD programs, and 

UCEDDs when implementing their state plan activities, and document the 

type, amount and cost, and effectiveness of technical assistance or support 

ADD has provided to enable the programs to overcome these challenges. 

1.7 Congress should establish and maintain a dedicated funding source for 

technical assistance from organizations that have demonstrated successful 

experience with the workings and the context of each of the three network 

programs. 

1.8 ADD should revise the Developmental Disabilities Program Independent 

Evaluation to realign it with recommendations 1.4, 1.6, and 1.7 above. 

1.9 ADD should be staffed and resourced adequately so that it can be an active 

participant in mediating disputes between grantees and state agencies. 

ADD should encourage meaningful collaborations among network partners and 

other entities. Currently, the office requires that network partners meet with each 

other but does not focus on the value of the collaboration and does not put the 

same emphasis on collaboration with other entities. 

1.10 ADD should coordinate the reapplication process so that a state’s DD Council 

and UCEDDs are on the same five-year planning cycle. 

1.11 ADD should streamline reporting requirements related to collaboration and 

coordination among the network partners and other entities and emphasize 

the results of meaningful collaboration. 

54 
10. UCEDDs 

UCEDDs are a rich source of research and expertise in a variety of topic areas. 

Their ability to provide training, engage in research, provide community services, 

and disseminate information is limited by the level of available funding. 

2.1 Congress should review the funding level of university-affiliated programs that 

are similar to UCEDDs and increase UCEDD appropriations to be consistent 

with these programs and at a level sufficient to meet the goals of the DD Act. 

2.2 ADD should make other federal partners aware of the resources available in 

the UCEDD network for multistate research, evaluation, and information 

dissemination activities. 

To compete for grant funding, UCEDDs must respond to the priorities of a 

number of federal agencies. However, there is no coordinated approach to ensure 

that agencies are funding research and training to address the wide array of 

issues facing people with DD. 

2.3 The Secretary of HHS should establish a mechanism to coordinate federally 

funded research on DD and develop a research agenda. 

2.4 Congress should direct the GAO to identify areas in which shortages of 

personnel restrict access to needed supports, measure the scope of current 

and future training needs in those areas, assess the existing training capacity, 

and identify options to expand the capacity. 

11. State and Territorial Councils 

Councils play an important role in achieving the vision of the DD Act, yet their 

role could be strengthened by working more closely with Medicaid and other 

state agencies. 

55 
3.1 Congress should reaffirm the critical role played by the Councils in promoting 

the independence, productivity, and community integration of individuals with 

DD by raising the annual appropriations for Councils in order to restore the 

Councils’ capacity for systems advocacy and demonstration activities. 

3.2 Congress should direct HHS, through ADD and the DD Councils, to launch a 

major new initiative to identify, analyze, and describe eligibility and funding 

inequities in the current Medicaid and state DD system, and to work 

collaboratively with major federal partners, state DD agencies, and state 

Medicaid agencies to eliminate these inequities. 

3.3 ADD should redesign the required nine areas of emphasis in state plan 

development and reporting format for DD Councils, and adopt a more 

relevant format that better reflects the systemic change, capacity-building, 

and advocacy roles of DD Councils and the long-term nature of their work. 

12. Protection and Advocacy 

The funding level for the PADD program and PADD grantees leaves some people 

with DD and their families without access to legal advocacy and representation. 

Almost 60 percent of PADD clients served needed help with education issues. 

4.1 Congress should increase funding for the PADD program to meet the growing 

need for advocacy services of people with DD. 

4.2 Congress should establish and authorize funding for a Protection and 

Advocacy program specific to IDEA, to be administered through the DOE, to 

meet the critical need for legal advocacy related to education for children with 

DD. 

4.3 Congress should require that ADD and the other five agencies that fund the 

PADD systems streamline their reporting requirements and progress 

indicators so that scarce resources can be used for client services. 

56 
The investigative and legal authorities that the DD Act grants to PADD grantees 

are vital to the success of the program but are often under attack from states, 

provider groups, and a small but vocal group of parents and guardians. 

4.4 Congress, in the next reauthorization, should preserve legal and investigative 

authorities embodied in the DD Act. Specifically, the reauthorization should 

(1) ensure that the authorities are not superseded by state or other federal 

laws, (2) clarify that all PADD grantees, regardless of whether they are state 

or nonprofit entities, have the authority to enforce their access authority in 

court against both public and private providers, and (3) oppose legislation that 

restricts the legal authority of the PADD program to represent residents of 

institutions. 

4.5 If a state does not comply with the DD Act section 143 to provide access to 

records, the HHS Secretary should hold ADD accountable for using its 

authority to support PADD grantees. Furthermore, the Secretary should 

request sufficient resources during the budget process to ensure that ADD 

can achieve its mandate. 

13. Projects of National Significance 

PNS fund vital data collection projects, but in recent years PNS has moved away 

from its mission to also fund cutting-edge demonstrations that could become 

national models. 

5.1 ADD should develop a transparent system for identifying PNS priorities that 

includes consumers, policymakers, and network partners. 

5.2 ADD should develop an approach to track the follow up and outcomes of PNS 

programs in order to identify the value of PNS grants. 

5.3 ADD should fund additional data collection initiatives in areas such as health 

care access, direct care workforce issues, and educational outcomes. 

57 
14. Family Support 

Families play an essential and often challenging and increasingly lifelong role in 

supporting people with DD. Support for families is critical to enabling them to 

assume a proper role that recognizes the potential of a child and the freedom and 

legal status of an adult son or daughter. The nation needs systemic, statewide 

solutions that recognize the strengths and limitations of the existing family 

support structures in each state. 

6.1 ADD should convene a meeting of experts, stakeholders, and government 

representatives to identify changes in family support services, policy, and 

philosophy that have occurred since the family support provision was written 

and recommend changes to Title II before the DD Act is reauthorized. 

6.2 Congress should provide direct funding of Title II to ensure that funds are 

used consistent with the intent of the Act, rather than funding family support 

through PNS. The funding should be at a level of at least $15 million. 

6.3 ADD should coordinate through intra- and interagency groups with other 

federal partners that work on family support issues. 

15. Direct Support Workforce 

The shortage of qualified direct support workers threatens the opportunities for 

people with DD to be supported in the community. Currently, the shortage is not 

being addressed in a comprehensive manner. 

7.1 Congress should rewrite Title III to provide grants to states to develop, 

implement, and evaluate comprehensive workforce development programs to 

attract, retain, and train direct support professionals who provide support to 

individuals with DD. 

7.2 Congress should add recruitment, retention, and training of the direct care 

workforce to the areas of emphasis in the DD Act. 

58 
7.3 ADD should develop and help fund partnerships with other federal agencies 

to create a unified approach that ensures an adequate direct care workforce 

is available to serve the needs of people who are aging or have disabilities. 

16. Self-Advocacy 

The self-advocacy movement has a major impact on what and how decisions are 

being made. The movement should be supported in a way that maximizes the 

chance of success and maintains the principles of the DD Act. 

8.1 The Secretary of HHS should convene a process to develop a thoughtful 

approach to supporting the fledgling self-advocacy movement that does not 

rely on the scarce resources of the DD network partners. The approach 

should include the input of self-advocates, DD network partners, the Centers 

for Independent Living, and other relevant stakeholders and potential 

partners. 

59 
60 
CHAPTER 2. University Centers for Excellence in 

Developmental Disabilities 

1. Introduction 

ADD supports a discretionary grant program that funds 68 University Centers for 

Excellence in Developmental Disabilities (UCEDDs) to promote the purpose of the DD 

Act: “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...” [Sect 101, DD Act of 2000]. To accomplish this mission, the Centers are 

mandated to provide interdisciplinary training, technical assistance, research, and 

information dissemination services. Many also provide model direct services to children, 

youth, and adults with disabilities and establish model service demonstrations. 

Each UCEDD receives core funding from ADD ($528,000 in 2009) and leverages 

funding from other federal, state, and local sources. In 2008, with ADD committing only 

$37 million, the centers leveraged more than $485 million to work on issues related to 

developmental and other disabilities from federal, state, and local grants and contracts. 

While the ability to leverage such a substantial sum is one of the program’s overall 

strengths, it also represents a major challenge. Because a considerable portion of each 

UCEDD’s funding comes from sources other than ADD, the UCEDDs must be 

responsive to the mission and aims of the other funders and other authorizing 

legislation, such as IDEA, and therefore cannot focus exclusively on their mission as 

defined in the DD Act. 

The DD Act began funding interdisciplinary university programs to address the critical 

needs facing people with DD in the early 1970s, when states were moving away from 

large congregate institutional placement toward active treatment and community-based 

care. At the time, policymakers conceptualized disability using a then current medical 

61 
model, and people with significant DD lacked adequate access to medical and allied 

health professionals in the community. As a result, the original programs focused on the 

interdisciplinary training of medical and allied health professionals, providing diagnostic 

services, and conducting research. The concept of disability has evolved to a “social 

model” with the understanding that people with DD have a broad range of needs, and 

the UCEDDs have contributed to establishing an academic interdisciplinary approach 

supporting this social model. 

The number of UCEDDs has expanded over the years to include at least one in every 

state. Although all are interdisciplinary units of universities or entities associated with 

universities, they vary significantly in size, structure, and emphasis. For example, some 

continue to focus on training health and allied health care providers; others focus on 

early childhood, primary, secondary education, and/or employment; and others focus on 

public policy and broad national, state, and local systems change issues. Most UCEDDs 

address multiple issues, and most issues relevant to people with DD are addressed in 

at least one of the 67 UCEDDs. 

ADD and many in government agencies and nonprofit national disability organizations 

consider the UCEDDs as both state and national resources. As such, many have 

developed strong relationships with state government agencies and have a significant 

impact on training and policy. However, their ability to address the issues facing their 

state varies based on the needs of the state, the expertise of the UCEDD, and the 

availability of resources. 

The DD Act requires that UCEDDs develop a strategic plan that is data driven and that 

is consistent with and, to the degree feasible, complements and furthers the DD 

Council’s five-year plan goals. However, the extent to which the UCEDD has projects 

and expertise that support and complement the work of the DD Council varies by state. 

UCEDDs have worked on many issues over the past four decades, ranging from early 

intervention to aging with a disability, from education to employment and recreation, 

from inclusive day care to school-based supports and clinical practice. In 2008, they 

62 
trained 3,560 students and fellows, provided clinical services to 105,388 individuals, and 

operated 1,163 projects with a research component. Over the years, as Dowrick (1998) 

noted, UCEDDs have been characterized as programs that have been successful at 

developing cutting-edge services, training, and research. The programs also have been 

cited in support of best practices internationally (e.g., supported employment, full 

inclusion, self-determination, and applied behavior analysis). 

Nevertheless, after more than 30 years of funding, many challenges continue to exist 

and a great deal of work still needs to be done. For example: 

● People with DD continue to have difficulty finding providers with appropriate 

training (Krauss, Gulley, Sciegaj, & Wells, 2003). 

● Evidence suggests that health care providers in the community lack a current 

understanding of the needs and expectations of people with DD (U.S. 

Surgeon General, 2002). As one stakeholder said, “We need an educated 

and updated medical system to understand not what disability was 30 years 

ago but to understand what disability is right now.” 

Could or should the UCEDDs play a bigger role in addressing these and other 

challenges facing people with DD? Do current policy, structure, and administration of 

the UCEDD program fully utilize their capabilities? Is there a disconnect between the 

breadth of the mandate and the funding level? 

This report provides the background needed to address these questions by exploring 

the program’s strengths and challenges, ADD’s monitoring and evaluation efforts, 

outcomes achieved, and promising practices. 

2. Program Goals 

The UCEDD program is designed to complement the advocacy, capacity-building, and 

systemic change activities of the State Councils and the protection of legal and human 

63 
right initiatives of the PADD systems 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...” [Sect 101, DD Act of 2000]. 

More specifically, according to the Act, “UCEDDs are funded to provide leadership in, 

advise federal, state, and community policymakers about, and to promote opportunities 

for individuals with developmental disabilities to exercise self-determination, be 

independent, be productive, and be integrated and included in all facets of community 

life” [Sect 153, DD Act of 2000]. 

To address this broad mandate, the UCEDDs are required to engage in four core 

functions addressing, directly or indirectly, one or more of the areas of emphasis: 

● Interdisciplinary preservice preparation and continuing education of 

students and fellows. UCEDDs provide formal training to students in a 

variety of fields to enhance skills in leadership, direct service, and clinical and 

other areas. Teaching faculty represents a variety of disciplines, such as 

pediatrics, early intervention, education, psychology, social work, law, public 

health, social services, disability studies, and nursing, in order to develop a 

cadre of individuals with the necessary knowledge, skills, attitudes, and 

values to provide or influence services and supports for people with DD and 

their families. 

● Community services. UCEDDs provide training, technical assistance, and 

information to individuals with DD, families, support service organizations, 

professionals, paraprofessionals, students, state systems, volunteers and 

others. In addition, they provide clinical services and direct services to people 

with developmental and other disabilities using demonstration and model 

activities. 

64 
● Research. To advance general knowledge in the field and provide policyrelevant information, UCEDDs engage in basic and applied research in a 

variety of fields, most notably early intervention, education (at all levels) and 

rehabilitation, medical, pharmacological and biological, and public policy 

analysis. 

● Dissemination of information. UCEDDs educate and inform various 

audiences, such as people with DD and their families, researchers, 

policymakers, professional and consumer groups, employers, and other DD 

network programs. They work to bridge the gap between research and 

practice by developing products and resources in a variety of formats that are 

then disseminated to families, consumers, and professionals throughout the 

United States and internationally. 

3. History and Context 

The UCEDD programs evolved out of the University Affiliated Facilities (UAFs) first 

authorized in the Mental Retardation Facilities Act, signed by President Kennedy in 

1963 (P.L. 88-164). The original grants included funding to build medical/training 

facilities and emphasized clinical services, diagnosis and treatment programs, and 

interdisciplinary training of personnel. They were designed to train and expand a 

national cadre of health and allied health professionals to address the needs of 

individuals with DD (Fifield & Fifield, 1995). The focus of the centers has evolved as the 

values identified in the DD Act have moved from institution-based services to 

community-based services to community integration and self-determination. 

The first UAFs were constructed in the early 1970s, when access to care in the community 

was severely limited. Most specialty care and dentistry was provided within institutions, and 

few community physicians and dentists had the training, knowledge, and understanding to 

serve people with significant DD. By exposing nonspecialists to patients with DD, the UAFs 

were able to expand the number of community physicians as well as motor and language 

therapists and educators who could serve people with DD. 

65 
The grants soon eliminated the funding for facilities and changed the name from 

“facilities” to “programs,” and since the late 1980s the programs have expanded their 

focus from medical and allied health care to include education, consumer 

empowerment, productivity, independence, and inclusion. Recent reauthorizations have 

increased the importance of community-based programming, technical assistance, and 

dissemination. 

The 2000 reauthorization added research as a core function and renamed the 

University Affiliated Programs UCEDDs. This name change reflected the evolution of 

the entities from individual programs to centers that have multiple partners and multiple 

functions and carry out a profile of activities. 

The size of the UCEDD network has been expanding slowly since its inception. As of 

1996, ADD has provided funding for at least one UCEDD in each state. 

4. How the Program Operates 

Each of the 67 UCEDDs receives the same amount of funding, with annual funding 

levels determined by the appropriations process (FY 2009 funding is $528,000 per 

year). The centers are expected to leverage this core ADD funding into federal, state, 

and local grant support to fund disability-related activities. UCEDDs employ a range of 

leveraging mechanisms including federal, state, and local grants and/or contracts; 

cooperative agreements; private sector support; and some fundraising. 

Each UCEDD has a different mix of activities and populations served. Some provide 

direct service on-site, while others provide very few services on-site but provide 

substantial technical assistance and community services in their local community and 

throughout their state. 

Every five years, each UCEDD must develop a five-year plan, in conjunction with a 

Consumer Advisory Committee, and reapply for funds. 

66 
a. Core Grant 

The $528,000 annual grant from ADD provides core funding for the UCEDDs. For some 

of the larger centers, the core grant covers administrative expenses that are difficult to 

cover with other funding sources. For the smaller programs, the core grant represents a 

substantial portion of their operating budget. 

b. Leveraging Other Funding Sources 

Since their inception in 1972, UCEDDs have been expected to compete for federal or 

state contracts and grants. Typically, these grants are relatively short term (one to five 

years). Some UCEDDs have secured additional predictable funding. Most notably, 

● Thirty-four UCEDDs are co-located in universities that have Leadership 

Education in Neurodevelopmental & Related Disabilities grants from the 

Maternal Child Health Bureau of the Health Resources and Services 

Administration (HRSA). These grants support specific training initiatives for 

children by providing stipends for graduate students and subsidizing faculty 

from 13 disciplines. 

● Twelve UCEDDs are also Eunice Kennedy Shriver Intellectual and 

Developmental Disabilities Research Centers funded by the NIH. These 

grants provide core funding for biomedical and behavioral research. 

● Another growing funding source has been the National Center on Birth 

Defects and Developmental Disabilities (NCBDDD) of the Centers for Disease 

Control and Prevention (CDC). Eight of the UCEDDs run State Disability and 

Health Programs with their respective State Health Departments, while others 

participate in surveillance research for disorders such autism, fragile X, early 

hearing loss, and spina bifida funding by NCBDDD. 

As shown in Exhibit 2.1, the DOE represents the largest source of funding, followed by 

NIH and ACF. CMS provides $7.2 million to UCEDDs for research and training—only 

67 
0.04 percent of the $19.6 billion that CMS spends for direct services for people with 

intellectual and developmental disabilities in home- and community-based waivers, 

ICF/MR, and related Medicaid programs (based on data from Braddock et al., 2008). 

Exhibit 2.1 

Federal Funds Leveraged for UCEDD Research, 2008 

Department or Administration 

2008 Funding

(in $ millions) 

Percentage of 

Total Research 

Funding Leveraged

Department of Education $59.8 32% 

National Institutes of Health $48.9 26% 

Administration on Children and Families $35.2 19% 

Health Resources and Services Administration $16.5 9% 

Other Administrations in Health and Human 

Services $9.7 5% 

Other federal $7.4 4% 

Centers for Medicare and Medicaid Services $7.2 4% 

Centers for Disease Control and Prevention $4.1 2% 

All Sources $188.7 100% 

Source: Association of University Centers on Disabilities (AUCD), 2009 

On average, the ADD core grant represents only 6 to 15 percent of the total UCEDD 

budget (Association of University Centers on Disabilities, 2009), but it provides 

important infrastructure funds, ensures long-term viability and short-term bridge funding 

for the center when other grant funding is not available, and is intended to make the 

UCEDD program attractive to university administrations and academic departments. 

The amount of funds leveraged varies significantly among centers. As shown in 

Exhibit 2.2, 16 programs leverage less than $3 million, while one program leverages 

$33 million. 

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Exhibit 2.2 

Distribution of Total Dollars Leveraged by UCEDDs, 2008 

Source: Retrieved from the National Information and Reporting System by AUCD staff upon request. 

1. On average, 43 percent of the funds are from federal sources, 32 percent from 

state organizations, 10 percent from local governments, and 15 percent from 

other sources. The relative importance of each funding source varies significantly 

among centers. For example, state sources represent more than 50 percent of 

funding in 16 of the centers and less than 10 percent of the funding in 10 centers. 

c. Five-Year Plans 

Each UCEDD must develop a five-year strategic plan with input from staff, a consumer 

advisory committee, ADD sister programs (the Council and PADD), and other state 

agencies and organizations. This plan forms the basis of the application for continued 

funding that the UCEDD submits to ADD. The plan must include a projected goal 

related to one or more areas of emphasis for each of the core functions required by 

UCEDDs. 

69 
The ability of a UCEDD to adhere to the strategies outlined in its five-year plan depends, in 

large part, on available funding opportunities and its ability to secure these funds through 

grant applications. Because funding opportunities are unpredictable, UCEDDs must 

develop the strategic plan based on existing and projected funding. The center must 

formulate the plan without always knowing exactly what type of grants and contracts the 

funders will be awarding or whether the UCEDD will be successful in its applications. 

d. Consumer Advisory Committee 

In compliance with the DD Act, all UCEDDs have a Consumer Advisory Committee (CAC) 

that meets at least twice a year to assist with the development of the five-year plan, 

participate in an annual review of the plan, and make recommendations regarding any 

proposed revisions. The CACs are composed of self-advocates; parents who have children 

with DD; and representatives from the UCEDD, the PADD, and the DD Council. Typically, 

there is also representation from state and community partners. The majority of CAC 

members are individuals with DD and parents or family members of people with DD. 

e. Areas of Emphasis 

In the five-year application for reauthorization and the annual review, for each core 

function UCEDDs identify goals related to one or more of the nine areas of emphasis 

identified in the DD Act: quality assurance, education and early intervention, child care, 

health, employment, housing, transportation, recreation, and other. Taken together, the 

areas cover most but not all topics in which UCEDDs are or could be involved. Topics 

such as postsecondary education, aging, and assistive technology are not included, nor 

are barriers that cut across service systems. UCEDDs are free to work in these areas 

and report them in the “other” category, but these areas do not have the visibility of the 

other issues. The areas of emphasis do not include the full range of areas in which the 

UCEDDs work, but do not seem to restrict the work of the UCEDDs. 

70 
The areas of emphasis serve two purposes: First, they provide a common language by 

which UCEDDs, CACs, and other network partners can talk about their work. Second, they 

provide ADD with a mechanism to classify the efforts being devoted to a particular area. 

UCEDDs are required to address one or more areas of emphasis. All report that they 

have projects in at least three areas of emphasis, and several report that they have 

projects in all identified areas. Individual projects may address multiple areas of 

emphasis; each UCEDD addresses an average of seven areas of emphasis. The most 

common areas of emphasis are education/early intervention and health. These 

correspond closely to the two largest funders—DOE and NIH. 

Exhibit 2.3 

Percentage of UCEDDs Reporting Work in Each of the 

Areas of Emphasis, Based on 2008 Annual Reports to ADD 

Category 

Percentage of 

UCEDDs 

Education and Early Intervention 94% 

Health 89%

Quality Assurance 71% 

Employment 60%

Child Care 54% 

Housing 40%

Transportation 32%

Recreation 30%

Other

Quality of Life 63% 

Other Leadership 56% 

Cultural Diversity 43% 

Assistive Technology 40% 

Other 38%

Source: Author’s analysis of 2008 UCEDD annual reports 

71 
If ADD is interested in maintaining the areas of emphasis as reporting devices, there are 

two approaches for expanding the areas of emphasis in the next reauthorization. 

Additional areas of emphasis such as aging caregivers, aging with a disability, 

postsecondary schooling, technology, abuse and neglect, integration in the generic 

service system, or disability studies could be added to the DD Act. Alternatively, the 

areas of emphasis could be replaced with more general categories that would be more 

inclusive of possible areas of effort, such as community living, health, education, and 

employment. If ADD is interested in using the areas of emphasis to guide the work of 

the UCEDDs, then a different approach is warranted. 

f. National Training Initiatives on Critical and Emerging Needs 

When appropriations exceed the sum needed to fund the core awards, ADD may award 

grants for “national training initiatives” (NTIs). 

In accordance with the DD Act, ADD established a consultation process to identify 

emerging and unmet needs of people with DD. Based on the meeting, which included 

representatives of all network partners as well as consumers and family members, ADD 

identified self-determination and postsecondary education as the two most important 

emerging issues. 

The office solicited proposals, and in October 2008, awarded Cooperative Agreements in 

the amount of $800,000 to two consortia of UCEDDs. These awards served dual purposes. 

First, they draw on a range of disciplines and expertise available in the UCEDD network. 

Second, they provided an opportunity for centers to collaborate and strengthen their 

relationships while addressing critical national issues that face people with DD. 

In addition to the NTIs, each UCEDD is eligible to compete for additional funding from 

ADD for PNS (including the Family Support 360 projects) funded under Title I subtitle E 

of the DD Act (see Chapters 5 and 6 for a discussion of these programs). 

72 
5. Accomplishments 

The true “outcome” of a program is defined as a result “which otherwise would not have 

occurred without the program intervention” (Office of Management and Budget, 2008). 

However, the outcomes of the DD Act (to improve access, promote self-determination, 

etc.) are achieved not only through the efforts of DD network programs, but also through 

the combined efforts of a large number of organizations, agencies, and individuals. 

Thus, it is not possible to demonstrate directly that a UCEDD was solely responsible for 

any particular outcome. 

Despite the methodological constraints, evidence suggests that the UCEDD program 

has been very effective in many areas: 

● The ADD core funding has facilitated the development of a beachhead for 

research and training for DD into universities. 

● UCEDDs have been on the forefront of interdisciplinary training and service 

for 35 years, moving practice from unidisciplinary to multidisciplinary to 

interdisciplinary approaches. 

● UCEDDs were instrumental in the development of early intervention and early 

childhood programs, including the development of assessment and diagnosis, 

service delivery models, and personnel training. In many states they continue 

to play a major role in providing technical assistance to infant intervention and 

early childhood special education programs. 

● For 35 years, the UCEDDs have prepared personnel for work in the national 

disability service system, from early childhood special education programs to 

job coaches, positive behavioral support specialists, and direct service 

workers in the residential/community living systems. 

● UCEDDs traditionally have played a key role in providing public policy and 

service delivery resources in their states. Major areas of impact include 

special education, autism research and services, and Medicaid programs. 

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6. Strengths and Weaknesses 

a. Long History and Stable Programs 

The Federal Government has been funding interdisciplinary centers in universities to 

address the needs of people with DD for more than 35 years. The guaranteed funding 

from the DD Act supports the infrastructure and to some extent guarantees the ongoing 

existence of the centers. The stability of the program offers several advantages, 

including that the centers are: 

● able to develop a long-term strategic relationship with the state and other 

agents of systems change. 

● allowed to develop a reputation in the field, which enhances their ability to 

leverage additional resources. 

● ensured a long-term view of the needs of people with DD and able to build the 

infrastructure to plan for future needs. 

b. Interdisciplinary Focus 

People with DD face complex medical, educational, and community issues that cannot 

be addressed by a single discipline. In the 1970s, the notion of interdisciplinary 

approach was having a neurologist, a pediatrician, an occupational therapist, and a 

physical therapist. Now the term encompasses educational specialists, behavioral 

specialists, psychologists, dieticians, occupational and physical therapists, economists, 

engineers, and others. This interdisciplinary approach— 

● Affords researchers opportunity to work with people from different academic 

disciplines to address a single issue. 

● Provides opportunities for students who are focusing on DD to work 

effectively side-by-side with professionals from other disciplines. 

74 
● Provides opportunities for students in disciplines such as medicine or 

economics who are not specifically focusing on DD to understand the issues 

and barriers faced by people living with DD, thereby expanding the reach of 

the DD Act into generic research and service systems. 

● Stands in contrast to the categorical nature of most federal programs. 

c. University Affiliation 

Affiliation with a university is one of the core requirements of each UCEDD. The 

structure of the affiliation varies among UCEDDs. Physically, some of the centers are on 

campus, others are off-campus in rented space. Programmatically, some are fully 

integrated into the university, while others have a more distant relationship with the 

university and are more embedded in the community. 

This affiliation is one of the strengths of the program but may also present challenges: 

● Being part of the university enables the UCEDDs to influence the training of 

future cohorts of professionals who will be serving people with disabilities and 

the general population. UCEDDs can influence four types of students: 

(1) preservice interdisciplinary students (usually graduate students or 

students pursuing a professional degree) who already have shown an 

inclination toward participating in a disability-related field; (2) students from a 

variety of departments who participate in disability studies; (3) students 

throughout the university who may never have thought about disability as an 

interest or career but have been exposed to disability content in one of their 

classes or courses; and (4) continuing education students who may already 

be practicing in a disability-related field and take a UCEDD-sponsored course 

to upgrade their knowledge and skills. 

● A UCEDD that is well-integrated with the university can infuse issues related 

to DD into the curricula of other departments, thereby “mainstreaming” the 

75 
issue into areas such as law, engineering, architecture, economics, and the 

social sciences. 

● The university affiliation gives the UCEDD credibility as an objective source of 

information. 

● The university provides a stable infrastructure that is likely to continue in the 

future for UCEDD research, training, and service development. 

On the other hand, UCEDDs may grant certificates but are not degree-granting 

academic departments within universities. They are typically centers within 

departments, colleges, or other academic units. For example, a UCEDD may be in a 

medical school department of pediatrics or in a college of education, or it may be a 

separate entity that spans several departments or a center with an interdisciplinary 

institute. These administrative details may affect the visibility of the program, the status 

of faculty positions, the commitment of the university to provide financial support, and 

the ability of the center to recruit students for training. Many UCEDDs have been able to 

work with university departments to recruit faculty and to obtain faculty appointments 

and tenure. Some UCEDDs have been able to influence their universities to develop 

certificate and undergraduate and graduate programs in disability studies and 

rehabilitation sciences. Other UCEDDs continue to struggle with these issues. 

d. Technical Assistance Center 

The past two ADD commissioners identified AUCD as a “best practice” or a “model 

technical assistance program.” 

In the past nine years, AUCD has promoted the capacity of the UCEDDs to work as a 

network or subnetworks to carry out multisite, multistate coordinated evaluations or 

research and development projects. This approach capitalizes on the aggregate 

expertise and experience contained in the network and the ease with which centers 

could collaborate with each other: 

76 
● SSA contracted with AUCD for assistance in assessing the determination 

process for children in certain populations (e.g., premature infants, teens with 

behavioral issues, 18-year-olds). AUCD subcontracted with eight centers to 

conduct interdisciplinary comprehensive evaluations (file review and face-to-face 

assessments) of a number of children in their states. Based on the UCEDD 

recommendations, SSA wrote regulations that changed eligibility guidelines. 

● AUCD has a cooperative agreement with CDC in which AUCD facilitates and 

coordinates a grant process. Based on CDC’s areas of interest, AUCD 

announces a research topic of interest or product development competition 

among the UCEDDs. The centers submit applications to AUCD, which convenes 

panels of reviewers and provides the scores to CDC. CDC decides which of the 

UCEDDs receive the grants. AUCD then manages the grant program, serving as 

a liaison between scientists at CDC and the funded projects. 

Because of arrangements like these, AUCD’s budget has grown from $700,000 in 2000 

to $6.4 million in 2008, with almost 70 percent of funds going back to UCEDDs that 

participate in various efforts. These types of arrangements strengthen the UCEDD 

network and provide an efficient and expedient process for Government agencies to 

accomplish their work, as well as gain expertise and points of dissemination in the 

participating states. However, it carries the risk of compromising AUCD independence 

and ability to critique these agencies when needed to serve the public good. In addition, 

it excludes qualified entities outside the UCEDD network. 

However, UCEDD directors and AUCD leadership believe that there are untapped 

opportunities for the UCEDD network to work with some of the Government agencies 

that fund individual UCEDDs, such as DOE, the DOL, DOJ, and HHS. By establishing 

models similar to those established by SSA and CDC, these agencies could use the 

network for the following: 

77 
● Nationwide research and development: Many UCEDDs have developed a 

track record in research and development that could be harnessed into a 

nationwide approach. 

● Nationwide demonstrations: With a presence in all 50 states, the District of 

Columbia, and the trust territories and a history of collaborations, the UCEDD 

network is in a unique position to implement nationwide demonstrations 

focused on people with DD. 

● Nationwide dissemination: The UCEDDs are connected to providers, advocacy 

groups, parent groups, and state governments, and could serve as credible 

sources to inform stakeholders of new initiatives, findings, and best practices. 

● Translation of research to practice: With expertise in both research and 

service provision, the UCEDDs are able to quickly translate research into 

practice. A stronger formal connection with various research-based agencies 

such as NIH, the Institute for Educational Sciences, and National Institute on 

Disability Research and Rehabilitation would enhance this opportunity. 

The value of strengthening the UCEDD network goes beyond increasing funding 

opportunities. 

Because each UCEDD has a different focus, a well-integrated network would be able to 

better serve each state by providing expertise that is not available in its own UCEDD. 

For example, a state may need training in positive behavioral supports, but the state’s 

own UCEDD focuses on disability policy studies and primary health care. The network 

could fill the gap. 

An integrated UCEDD network could also better serve the PADD organizations and the 

DD Councils. For example, a PADD organization may want a UCEDD expert to assist in 

investigations or provide expert testimony against a state or school district. The state’s 

own UCEDD wants to avoid establishing an adversarial relationship with the state that 

may jeopardize their funding and their ability to provide training and technical assistance 

78 
to the state. With a strong UCEDD network, the PADD could use an expert from a 

UCEDD in a neighboring state. 

e. Consumer Input 

The DD Act requires that each UCEDD have a Consumer Advisory Council (CAC). This 

language mandates a mechanism for consumers to influence the strategic planning 

process and to provide ongoing input to the UCEDD. 

The nature of the UCEDD program situated in a university structure with its own 

governing structure and funding contingencies poses certain challenges for the CAC to 

represent the needs of the consumers. For example: 

● The CAC works within confines of the strength and expertise of each UCEDD. 

If the community needs technical assistance with systems change activities 

but the UCEDD is focused on medical interventions, CAC recommendations 

may be difficult to implement. 

● Given the current expertise and focus of a particular UCEDD, it may not be 

possible for them to garner grant funding to address the needs that the CAC 

deems important. Even if a UCEDD submits applications, there is no 

assurance that it will be funded or that its application will be successful. 

On the other hand, a strong CAC can influence the professional training of a wide range 

of professionals who will be serving people with developmental and other disabilities for 

years to come. Their input into possible projects and areas of focus can influence the 

workforce available in their state and the type of training they receive. 

ADD initiated and funded supports for the CACs through AUCD in two ways. First, 

AUCD’s Council on Community Advocacy (COCA), an organization of CAC members, 

facilitates networking and information sharing among CACs from different UCEDDs. 

COCA has annual meetings and an electronic mailing list. Second, AUCD, with the 

79 
participation of CAC members from around the country, developed a training curriculum 

to introduce CAC members to their roles and responsibilities. 

In the absence of a comprehensive evaluation of the role of the CACs, it is not possible 

to determine the extent to which each of these challenges and advantages impact the 

influence of the CACs. 

f. Follow the Lead of the DD Act 

The DD Act includes a list of 12 principles that specify values and beliefs concerning the 

capability and participation of individuals with disabilities and their family members, such 

as respect for individual and cultural differences, the benefits of services and supports 

provided in an individual manner, and the advantages of integration and participation 

(42 USC 15001). 

The UCEDDs are tasked with figuring out how to best develop these principles into 

research, training, and practice. In addition to setting out principles that drive the 

research, ADD and the DD Act can put special emphasis on certain topics. For 

example, the DD Act of 2000 specifically identifies the need to promote positive 

alternatives to the use of restraints and seclusion. 

UCEDDs have addressed this issue using each of the four core functions, as shown in 

Exhibit 2.4: 

80 
Exhibit 2.4 

Core Functions of UCEDDs 

Preservice Training 

The universities of Oregon, Kansas, and South Florida have developed, evaluated, 

and disseminated Web-based instructional modules on positive behavioral supports 

for use in preservice training. 

Community Service 

UCEDDs are providing training on positive behavioral supports to a number of 

populations, including direct service workers and other professionals (AR); teachers 

(OR); consumers, families, parents, direct care staff, provider agency personnel, and 

staff of early intervention and other programs (UT); and brain injury specialists (VA). 

Several UCEDDs provide technical assistance to schools (including onsite 

observation and assistance) (AZ, NJ, FL, GU); and Medicaid home and communitybased waiver providers (ID). 

One UCEDD is working with the state DD agency to modify language in Medicaid 

waivers to more effectively utilize Medicaid funding for positive behavioral supports (SC). 

Research 

Two UCEDDS have undertaken medical/scientific studies related to understanding 

behavior in order to develop appropriate behavioral support strategies. One is 

studying the co-occurrence of cognitive problems and difficult temperament 

characteristics (CA-UC Davis), and the other is developing animal and human 

laboratory models of maladaptive behaviors in order to understand the environmental 

factors that precipitate those behaviors (KS). 

Dissemination 

Principles, values, and approaches to positive behavioral support developed at the 

University of Oregon are currently being implemented in more than 4,500 schools in 

the United States. The UCEDD has developed Web sites that offer information about 

positive behavioral supports, provide fidelity monitoring, and analyze patterns of 

office discipline. 

7. Major Issue—Funding 

In 2009, each UCEDD received $528,000. The centers use this funding for 

administrative costs and grant applications. They reapply for continued funding every 

five years in a closed competition; that is, only current grantees are eligible to apply for 

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funding. These funding issues—leveraging, flat funding, closed competitions, and the 

funding level—create both strengths and challenges for the program. 

a. Leveraging 

This arrangement of a “permanent” budget with time-limited, project-specific funding has 

advantages and disadvantages. On the positive side: 

● Requiring the UCEDDs to repeatedly compete for ADD funds and to leverage 

resources by applying to other agencies for competitive funding ensures that 

their approaches are up-to-date, peer reviewed, and meeting the needs of 

other federal agencies. 

● The UCEDDs introduce the needs of people with DD into multiple forums and 

federal agencies. For example, if there is funding for literacy available from 

the DOE, UCEDDs will try to figure out how their mission and the needs of 

students with DD as well as other disabilities fits with this funding, thereby 

mainstreaming the DD agenda. 

● The funding structure promotes interagency collaboration. Awarded grants 

tend to be applied and field based, rather than entirely initiated by the 

scientist (Dowrick, 1998). For example, almost half the centers have contracts 

with state agencies to provide policy development/analysis and to provide 

direct services such as diagnostic and assessment services or case 

management (AUCD, 2008). 

On the challenging side, the UCEDD’s portfolio of work is dictated in part by state and 

federal agency funding priorities, rather than necessarily by an objective review of the 

needs of the community or by the DD Act’s areas of emphasis. The degree to which 

federal and state priorities actually match the needs of people with DD is an open 

question and probably varies by state and national priorities at a particular time. 

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In addition, there is no national research agenda that identifies gaps in existing 

knowledge related to DD, priorities, feasibility, and timetables for priority research (U.S. 

Surgeon General, 2002). As a result, funding sources pursue their own agendas rather 

than coordinating their efforts. The real issue is the lack of a coordinated and 

comprehensive approach to research, training, and technical assistance. Conflicting 

priorities at the federal level provide a significant mixed message as to the outcomes 

desired by the different federal agencies. Recent attempts to coordinate across federal 

agencies, as in the autism area through the Interagency Autism Coordinating Council 

and the Office on Disability, may provide overall direction for national research and 

service priorities. 

Many UCEDD grants are focused on a population larger than the DD population. For 

example, education programs may address the needs of children with a wide range of 

disabilities, some of which would not meet the “severity” aspect of the DD definition. 

Programs addressing the needs of adults may focus on the needs of adults with 

significant disabilities, regardless of the age of onset. Recognizing the overlapping 

needs between those with DD and those with other disabilities, as well as the priorities 

of other funding sources, the DD Act allows the UCEDDs to undertake programs that 

address a wide range of disabilities. As a result, although it would be natural for an 

evaluation of the DD Act to assess the extent to which the UCEDDs serve people with 

DD, it is not possible to quantify the funds that are used directly for DD. 

b. Flat Funding 

In contrast to the State Councils and PADDs, all UCEDDs receive the same amount of 

funding regardless of the size of the state. To the extent that the DD Act funds serve as 

a “core grant” (a platform with which to leverage additional sources), this flat funding 

structure is appropriate. However, to the limited extent that the funding is used to 

support important projects that are not funded through other state or federal entities, the 

flat funding poses a challenge for the UCEDDs in larger states, those with more 

complex issues, and those with less available state funding, although some states do 

have multiple UCEDDs. 

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c. Closed Competition 

Every five years, on a rotating basis, each UCEDD must reapply for continued funding 

and have its proposals peer reviewed. Reviewers as well as ADD can place conditions 

on individual centers if the office determines that grant applications were not in 

compliance or had significant weaknesses. However, by statute, only existing UCEDDs 

may apply for funding, except in years when funds are available for adding centers to 

the network. 

The fact that UCEDDs do not openly compete with other entities that meet certain 

requirements is an unusual feature of the DD Act. Most federal research and training 

grant competitions, such as the Rehabilitation Research and Training Centers funded 

by DOE, are issued as an open competition. The U.S. Government has a general policy 

of encouraging full, open, and fair competition for research supported by federal funding 

(e.g., the Competition in Contracting Act of 1985). 

d. Funding Level 

The funding level has increased steadily, from $382,888 in 2002 (Exhibit 2.5) to 

$528,000 in 2009. Nevertheless, representatives of advocacy groups, ADD, and the 

UCEDDs believe that the program could be more robust with additional funding. 

Additional core funding would enable the UCEDDs to address issues that are not 

funded by other agencies or organizations. Often these are issues that do not fit 

squarely into the categorical nature of other agencies, such as dual diagnosis of 

developmental disability and mental health issues; aging with a disability; and 

integration of employment, housing, transportation, and recreation. 

UCEDDs are able to commit only a small amount of time to projects that are not funded. 

Therefore, they have limited flexibility to assist other network partners. With additional 

core funding, UCEDDs could provide training, technical assistance, and information to 

other network partners. 

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Exhibit 2.5 

Average Funding Level per Center, 1988–2009 

(in inflation-adjusted 2009 dollars)* 

Source: Author’s calculations based on UCEDD appropriations reported in Graney, 2001; Sommers, 

2008; and the Consumer Price Index for All Urban Consumers Reported in BLS, 2009. 

*included core funding and related funding such as National Training Initiatives and Training Initiative 

Projects 

An exhaustive comparison between UCEDD core funding and that of similar programs 

is beyond the scope of this report. However, cursory analysis suggests the UCEDD core 

funding is similar in size to some of the P30 grants from NIH that provide administrative 

support to centers that hold multiple NIH grants, but is substantially smaller than the 

Department of Agriculture Extension grants that fund core support and outreach and 

dissemination activities. This suggests that additional funding would be needed to 

pursue otherwise unfunded activities. 

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8. Current Monitoring and Evaluation Activities 

ADD uses four tools to monitor and evaluate the UCEDDs: the annual report, the 

MTARS, the five-year application for reauthorization, and the GPRA/PART measure. 

These tools provide ADD with information about whether each grantee is in compliance 

with the law and regulations, but they do not assess the quality or impact of the 

individual centers or of the UCEDD program, nor do they identify short- or long-term 

outcomes. 

a. Annual Report 

The annual report includes a description of each of the projects in which the UCEDD is 

engaged and how those projects are related to the goals specified in the five-year plan. 

In addition, the report includes funds leveraged and data on the number and scope of 

technical assistance activities, products developed, and students trained as well as 

measures of trainee and consumer satisfaction. 

b. Monitoring and Technical Assistance Review System 

As described in Chapter 1, the MTARS brings together peers, consumers, and ADD 

staff to comprehensively review all network grantees (UCEDDs, DD Councils, and 

PADDs) in two to five states per year. 

Prior to its inclusion in the MTARS process, AUCD had developed a quality 

enhancement system that facilitated peer-to-peer review and technical assistance. 

Although ADD reports that this approach did not meet its monitoring needs, many 

UCEDD directors mentioned that the peer review was more consistent with typical 

university reviews, bolstered underperforming centers, and provided a mechanism for 

quality improvement using methods that are well accepted in the higher education 

community. 

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c. Application for Continued Funding and Peer Review 

In compliance with the language of the DD Act, ADD convenes three-person review 

panels to evaluate the UCEDD applications. Each panel includes a UCEDD director and 

may include representatives from a DD Council or PADD grantee and a family member 

or self-advocate. The review team assesses the extent to which the UCEDD has a 

sound needs assessment, goals that are tied to the needs, a practical strategy to 

achieve those goals, and an evaluation process to measure their effectiveness. In 

addition, the team looks at the involvement of the CAC in developing the strategic plan. 

If the peer review team finds significant fault with the application, ADD can discontinue 

funding or place conditions on the grantee, which the grantee has to address before full 

funding is approved. To date, no UCEDD has lost its funding as a result of an 

inadequate application, but ADD has used its option to place conditions on grantees 

and require centers to submit revisions because their goals were either insufficiently 

measurable or not clearly related to the stated needs of the community, or because their 

strategies were not sufficiently articulated. 

d. Performance Measures 

As part of the annual performance report, ADD was required to develop goals for each 

grant program and report annually on progress toward those goals. The goal for the 

UCEDDs is to “Increase the percentage of individuals with developmental disabilities 

receiving the benefit of services through activities in which professionals were involved 

who had completed University Centers of Excellence in Developmental Disabilities 

state-of-the-art training within the past 10 years.” 

Based on survey data collected by the UCEDDs from professionals they had trained one, 

five, and ten years ago, ADD estimated that in 2007, 40 percent of individuals with DD were 

receiving services in which UCEDD-trained professionals were involved. The value 

dropped to 37 percent in 2008 (Administration on Children and Families, 2008). 

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In theory, the performance measure quantifies an important outcome of the UCEDDs. 

However, the data needed to estimate the value carries so much statistical uncertainty 

that it is not useful, because it would be impossible to see any meaningful changes from 

year to year (or even decade to decade) that could be attributed to real changes in the 

performance of the UCEDDs rather than random variation in the measure. 

9. Promising Practices 

UCEDDs have developed promising practices in many topic areas. For the purpose of 

this report, promising practices are those that maximize the impact of their training, 

technical assistance, research, and information dissemination on systems change. In 

the first three practices, UCEDDs impact the system directly. In the last two practices, 

the UCEDD impacts public perceptions of people with DD, which is a critical component 

to changing the system. 

a. Coordination with State Agencies 

The University of Iowa collaborates with the state Medicaid agency to rebalance the 

long-term care system. The UCEDD works with state and local councils and task forces 

for people with disabilities and the elderly. By writing grant proposals, the UCEDD has 

brought in grant funding to the state from CMS (Real Choice Systems Transformation, 

Money Follows the Person Medicaid Infrastructure grants) and the Robert Wood 

Johnson Foundation (Cash and Counseling). Since 2004, the UCEDD has had at least 

one staff person embedded at the state Medicaid office to coordinate systems change 

activities. As a result of these initiatives, 651 Iowans with disabilities (including 390 with 

DD) have more choice in hiring direct service workers, and 528 people with DD moved 

from ICF/MR to the community. 

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b. Technical Assistance and Dissemination 

The Institute for Community Inclusion (ICI) at the University of Massachusetts Boston, in

collaboration with the National Association of State Directors of Developmental 

Disability Services, has developed a national State Employment Leadership Network 

where individual state Mental Retardation and Developmental Disabilities agencies can 

purchase a seat at the table ($35,000 annually per member state) and be involved with 

the development of local and national policies and practices addressing employment of 

people with DD. By 2009, membership had grown to 17 states in all regions of the 

country. ICI provides technical assistance to the group using its long-standing research 

on employment strategies as well as its PNS-funded data collection efforts (Kiernan, 

2008; National Association of State Directors of Developmental Disability Services & 

Institute for Community Inclusion, 2008). The willingness of states to contribute a 

substantial amount to participate in the initiatives indicates its value to the states. 

c. Research, Policy, and Practice Working Together 

The University of Kentucky Interdisciplinary Human Development Institute, in 

conjunction with another university in the state and a state agency, has undertaken a 

large multisite study investigating the impact of the professional development 

component of Kentucky’s early childhood initiative, KIDS-NOW. The UCEDD has 

provided ongoing technical assistance and training for the initiative, and this longstanding relationship will enhance its ability to translate findings from the research into 

modifications to the program. 

d. Outreach to the General Population 

The University of Minnesota developed a year-long, 20-module curriculum fostering the 

social inclusion of junior and senior high school students with disabilities in school and 

the community. The program brings together students with and without disabilities for 

weekly classroom instruction and community experiences that increase understanding 

of the social inclusion needs and challenges of people with disabilities. Each student 

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with a disability is paired with another student who serves as an inclusion facilitator. The 

training is designed to guide teachers and community organization staff in implementing 

the curriculum without additional specialized training. However, technical assistance 

and on-site training are available from the Yes I Can program staff at the Institute. As of 

2007, 13 states have schools and districts implementing the program (Institute on 

Community Integration, undated). 

e. Infusing Disability Topics into a General Curriculum 

At JFK Partners/University of Colorado Health Sciences Center, all pediatric residents 

complete a rotation in behavioral pediatrics that includes both didactic information and 

direct experiences with children with DD and their families. 

f. Community Participation 

University of Missouri Kansas City works closely with Self Advocates Becoming 

Empowered (SABE) to promote the inclusion of self advocates in both the UCEDD 

governing board and national advocacy initiatives. In addition to providing formal 

advocacy training, the UCEDD provides mentoring and encourages SABE members to 

participate in national conferences by providing financial support and personal 

assistance services. 

10. Recommendations 

2.1 Congress should review the funding level of university-affiliated programs that 

are similar to UCEDDs and increase the UCEDD appropriations to be 

consistent with these programs and at a level sufficient to meet the goals of 

the DD Act. 

2.2 ADD should make other federal partners aware of the UCEDD network 

resources for multistate research, evaluation, and information dissemination 

activities. 

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2.3 The Secretary of HHS should establish a mechanism to coordinate federally 

funded research on DD and develop a research agenda. 

2.4 Congress should direct the Government Accountability Office to identify areas 

in which shortages of personnel restrict access to needed supports, measure 

the scope of current and future training needs in those areas, assess the 

existing training capacity, and identify options to expand the capacity. 

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CHAPTER 3. State and Territorial Councils 

1. Introduction 

The State and Territorial Councils on Developmental Disabilities (Councils) were first 

established nearly 40 years ago in the Developmental Disabilities Act Amendments of 

1970. When first conceived, the Councils were charged with planning a service system 

that would meet the medical and developmental needs of people with DD. The Councils 

were charged with a bold mission of coordinating the efforts of families, professionals, 

and state agencies to design and deliver necessary supports for all people with DD. 

Today, the Councils address myriad legislative, policy, programmatic, and fiscal issues 

through their advocacy, capacity-building, and system change activities. 

The purpose of this chapter is to examine the current status of the Council program and 

offer recommendations designed to guide future program structures and activities that 

will enable Councils, state network partners, ADD, and other collaborating state and 

federal partners to better fulfill the mission and goals of the DD Act. 

This chapter is divided into eight sections: a discussion of program goals, a review of the 

history and context in which the programs exist, a discussion of how the program operates, 

highlights of accomplishments, an overview of strengths and weaknesses, a review of the 

outcomes achieved, a discussion of promising practices, and recommendations. 

2. Program Goals 

DD Councils are federally funded programs charged with identifying the most pressing 

needs of people with DD in their state or territory. Councils work to promote selfdetermination, integration, and inclusion for people with DD through— 

● Training of and technical assistance to professionals, government officials, 

families, and self-advocates; 

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● Coalition development and citizen participation; 

● Information dissemination to policymakers; 

● Advocacy, capacity-building, and systems change; and 

● Demonstration of new approaches to services and supports. 

The goals of the Councils, as defined by amendments to the Act since 1970, have in 

some cases modified, redirected, or refocused their original charge. 

The Developmental Disabilities Assistance and Bill of Rights Act of 2000 also made 

major changes to the Council program. The statutory language signaled a change in the 

goal of the Councils from comprehensive state planning to influencing how states serve 

individuals and directed the Councils to engage in “advocacy, capacity building, and 

systemic change activities” (42 USC 15021 SEC 121). This broader mandate, in the 

context of the static resources, required Councils to carefully set priorities and allocate 

resources, collaborate with the other members of the state network, and develop strong 

partnerships with other advocacy groups and disability organizations in their state in 

order to be effective. While many DD Councils have successfully made the transition, 

others still struggle to meet their mandates. 

3. History and Context 

The 1970 reauthorization (P.L. 91-517) provided funding for Councils to coordinate and 

integrate the provision of services for people with DD in the least restrictive environment 

in their individual states. 

The following is a brief history of the evolution of the Act from 1970 to the present. The 

changes and shifts in language and focus reflect the rising expectations that led 

individuals with DD and their families out of isolation and institutionalization into an era 

that emphasizes inclusion, independence, and family and community supports. 

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Exhibit 3.1 

Evolution of the Councils 

Year/Title Essential Changes/Shifts

1970 (P.L. 91-517) Created and defined primary functions of the Councils. 

Conduct comprehensive planning to provide for more efficient and effective 

utilization of resources. 

Develop new or innovative programs to fill gaps and expand the reach of 

services to new groups of individuals. 

Refined types of services. 

Diagnosis, evaluation, treatment, personal care, daycare, domiciliary care, 

special living arrangements, training, etc. 

1975 (P.L. 94-103) State plan requirements modified to include— 

Requirement to eliminate inappropriate placements in institutions and improve 

the quality of institutional care. 

New service focus 

Preschool, systems advocacy, promotion of community alternatives to large 

institutions. 

Requirement to review and comment on all state plans of agencies that 

provided services to individuals with DD. 

Establishment of Bill of Rights for Individuals with Developmental 

Disabilities. 

1978 (P.L. 95-602) Definition of DD changed 

Developmental Disability is defined as a severe chronic disability of a person 

attributable to a mental or physical impairment, is manifested before age 22 

years, is likely to continue, results in functional limitations in 3 or more major 

activities, and reflects need for lifelong services. 

Eliminated the 16 basic service categories 

1984 (P.L. 98-527) Several shifts and changes 

Charged Councils with being responsible for service activities, but not actual 

delivery 

Purpose changed – Council purpose was to enable individuals with 

developmental disabilities ...”to achieve their maximum potential through 

increased independence, productivity, and integration into the community...” 

First definition of “supported employment” 

Non-vocational services was eliminated as a priority service and replaces with a 

new category of ”employment services”

1987 (P.L. 100-140) Continued expansion of Council responsibilities 

New focus on the role of families 

New program elements including family support and assistive technology

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Exhibit 3.1 (continued) 

Year/Title Essential Changes/Shifts

1994 (P.L. 103-230) Refined policy principles that were aligned with the ADA 

Emphasized widespread discrimination against individuals with DD. 

Need for increased awareness 

Introduced concept of consumer choice and consumer directed services 

to the DD program 

Focus emphasized inclusion, independence and community living 

2000 (P.L. 106-402) 

These are the last 

changes made to 

the DD Act to date. 

Purpose of Councils changed 

Engage in advocacy, capacity-building, and systemic change activities... that 

contribute to a coordinated, consumer- and family-centered comprehensive 

system of community services, individual supports, and other forms of 

assistance that enable individuals with developmental disabilities to exercise 

self-determination, be independent, be productive, and be integrated and 

included in all facets of community life (42 USC 15021 SEC 121). 

4. How the Program Operates 

There are 55 Councils—one in each state, in each of the four U.S. territories, and in the 

District of Columbia—with annual funding levels determined by the appropriations 

process. In 2009, the appropriation was $74,316,000, with awards ranging from 

$6,850,939 for California to $247,853 for each of the territories (Allotment Table in 

Administration on Developmental Disabilities, 2009a). In some states, the Council is 

positioned within the state government structure; in other instances the Councils are 

stand-alone 501(c) (3) organizations. Councils must spend a minimum of 70 percent of 

their grant on program activities to implement the plan and may use the remainder to 

administer the activities of the plan (Information and Technical Assistance Center for 

Councils, 2009). 

a. Independence from State Interference 

The Act specifically addresses the need for independence from state interference. Two 

clauses in the Act address this issue. The first is the “noninterference clause” in Section 

124 State Plan, (5) Assurances, (L) which states, “the plan shall provide assurances 

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that the designated State agency, and any other agency, office or entity of the State, will 

not interfere with the advocacy, capacity building, and systemic change activities, 

budget, personnel, State plan development or plan implementation of the Council,

except the designated State agency shall have the authority necessary to carry out the 

responsibilities described in section 125(d)(3)” (emphasis added). The second clause is 

found in Section 125, (c), (8) Budget, B, which states, “such State shall not apply hiring 

freezes, reductions in force, prohibitions on travel, or other policies to the staff of the 

Council, to the extent that such policies would impact the staff or functions funded with 

Federal funds, or would prevent the Council from carrying out the functions of the 

Council under this subtitle” (emphasis added). 

This policy of noninterference is being tested in the current environment, in which states 

are experiencing severely reduced funds and are attempting to use layoffs, furloughs, 

and other strategies to balance their budgets. ADD has reinforced this provision with 

state leaders when requested by individual Councils to do so. 

b. Structure and Function of the Council 

As discussed in the history of the Act, members of the Council are state residents who 

are appointed by the governor. The governor is required to solicit recommendations 

from organizations representing a broad range of individuals with DD and individuals 

interested in those who have DD. 

The Act states that the membership of the Council “shall be geographically representative 

of the State and reflect the diversity of the State with respect to race and ethnicity....Not 

less than 60% of the membership shall consist of individuals who are—individuals with 

developmental disabilities, parents or guardians of individuals with developmental 

disabilities, and immediate relatives or guardians of individuals with mentally impairing 

developmental disabilities who cannot advocate for themselves. Representatives of state 

agencies who work in this area are also included in the remaining 40% of the membership.” 

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The role of the Council is to— 

● Promote and support advocacy, systems change, and capacity-building 

activities for individuals with DD and their families. 

● Conduct or support programs, projects, and activities that improve the quality 

of life for individuals with DD. 

● Develop, implement, and monitor the progress of the state plan and adapt it 

as necessary and appropriate. 

● Periodically review the designated state agency. 

● Report activities to ADD. 

● Prepare, approve, and implement a budget. 

● Recruit and hire a Director consistent with state law. 

● Have staff to assist the Council in carrying out its responsibilities. 

● Establish or strengthen a program for the direct funding of a State selfadvocacy organization led by individuals with DD, support opportunities for 

individuals with DD who are considered leaders, provide leadership training to 

individuals with DD, and support and expand participation of individuals with 

DD in cross-disability and culturally diverse leadership coalitions (Information 

and Technical Assistance Center for Councils, 2009). 

The role of individual Council members is to assist the Council in all of its functions and 

to serve as a link between the Council, its consumers, and the community. 

c. Five-Year Plan Guides Activities 

Each Council works from a state-specific five-year plan developed through a system of 

community input and coordination and collaboration with other state DD partners and a 

broader network of state partners that includes State Departments of Developmental 

Services, the State Medicaid agency, transportation, housing, and education officials, 

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and others as needed. The reauthorization requires an analysis and reporting of existing 

waiting lists for services in the state. Several other major changes have been made to 

the planning process. The reauthorization strengthened the requirements that Councils 

document their efforts to coordinate their activities with UCEDDs and PADD programs 

within their state. Specific goals were established for the Councils’ self-advocacy efforts. 

Finally, the reauthorization established nine areas of emphasis that must be the focus of 

the Councils’ planning process, activities, and reporting process. 

This plan is reviewed and updated on a regular basis. 

d. Program Performance Report (PPR) 

Each Council is required to report to ADD annually. The report contains information 

about the progress made by the Council in achieving the goals that each specified in 

their five-year plan. Among others elements, it includes a description of the extent to 

which the goals were achieved, the strategies used to achieve the goals, and barriers to 

achieving the goals. 

e. Key Principles 

The 2000 Act adds new or additional emphasis on many key principles. A few of these 

principles are described below. 

Individuals and Their Families 

Councils are responsible for advocating, expanding services, and new approaches to 

meeting the needs of both individuals with DD and their families. This emphasis 

recognizes the unique needs of hundreds of thousands of adults with DD, particularly 

individuals who reside with aging caregivers, and individuals and their families who face 

very long waiting lists for Medicaid waiver services and are often unable to access the 

services and supports that they need to remain in their home and pursue their goals of 

independence, productivity, and community integration. 

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Self-Determination 

Councils are charged with ensuring that individuals with DD and their families are the 

primary decision-makers regarding the services and supports they receive, including 

choosing where to live from available options and playing decision-making roles in 

policies and programs. From Individualized Education Programs for special education 

students to Medicaid Waiver Individual Support Plans to Vocational Rehabilitation 

Individualized Written Rehabilitation Plans, services should be designed by and under 

the direction of the individual and his or her family. Although the Council system is fully 

based on consumer direction and control, other components of state service systems 

are far less inclined to allow individuals and their families to have a major voice in the 

design and delivery of services. This tension creates a major long-term challenge for 

Councils owing to their lack of direct authority over design and delivery of services. 

Abuse of Individuals with Developmental Disabilities 

Councils are charged with playing a role in monitoring state services for individuals with 

DD to ensure that those who use the services are free from abuse, neglect, sexual or 

financial exploitation, and violation of legal or human rights, and are not subjected to the 

inappropriate use of restraints or seclusion. The Act clearly recognizes that abuse of 

individuals with DD occurs in many forms, from children who suffer from inappropriate 

behavior management approaches in schools, to adults subjected to restraints or 

seclusion in community residential settings, to individuals victimized by Social Security 

representative payees. 

Culturally Competent Services 

Councils are charged with ensuring that services, supports, and other assistance are 

provided in a culturally competent manner and that individuals from diverse racial and 

ethnic backgrounds are fully included in all activities of the DD program. The Act 

recognizes that this goal is best achieved by supporting individuals from diverse ethnic 

and racial backgrounds to successfully advocate on their own behalf and assume 

leadership positions. In addition, Councils are charged with promoting the recruitment of 

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individuals from diverse racial and ethnic backgrounds into professions serving 

individuals with DD and their families. 

Unserved and Underserved Populations 

The term “unserved and underserved” includes populations such as individuals from 

diverse racial and ethnic backgrounds, disadvantaged individuals, individuals with 

limited English proficiency, individuals from underserved geographic areas (rural or 

urban), and specific groups of individuals within the population of individuals with DD, 

including individuals who require assistive technology in order to participate in and 

contribute to community life. 

f. Council Areas of Emphasis 

Current ADD planning and reporting requirements focus on cataloging state DD Council 

activities into nine areas of emphasis: child care, education/early intervention, employment, 

health, housing, recreation, quality assurance, transportation, and formal/informal 

community supports. These areas of emphasis are defined in the table below. 

DD Councils’ Areas of Emphasis 

Quality Assurance: Advocacy, capacity-building, and systemic change activities that 

result in improved consumer and family-centered quality assurance and that result in 

systems of quality assurance and consumer protection that include— 

1. Monitoring of services, supports, and assistance provided to individuals with DD 

to ensure that they have the right to make choices; 

2. Training in leadership, self-advocacy, and self-determination for individuals with 

DD, their families, and their guardians to ensure that those individuals will not 

experience abuse, neglect, sexual or financial exploitation, or violation of legal or 

human rights; and 

3. Activities related to interagency coordination and systems integration that result 

in improved and enhanced services, supports, and other assistance that 

contribute to and protect the self-determination, independence, productivity, and 

integration and inclusion in all facets of community life of individuals with DD. 

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DD Councils’ Areas of Emphasis (continued) 

Education and Early Intervention: Early intervention activities are advocacy, capacitybuilding, and systemic change activities provided to children and their families to 

enhance the ability of the individuals to maximize their potential and the capacity of 

families to meet their special needs. 

Education activities are advocacy, capacity-building, and systemic change activities that 

result in individuals with DD being able to access appropriate supports and 

modifications to maximize their educational potential, benefit from lifelong educational 

activities, and be integrated and included in all facets of student life. 

Employment: Advocacy, capacity-building, and systemic change activities that result in 

individuals with DD acquiring, retaining, or advancing in paid employment, including 

supported employment or self-employment, in integrated settings in a community. 

Health: Advocacy, capacity-building, and systemic change activities that result in 

individuals with DD having access to and use of coordinated health, dental, mental 

health, and other human and social services (including prevention activities) in their 

communities. 

Child Care: Advocacy, capacity-building, and systemic change activities that result in 

families of children with DD having access to and use of child care services, including 

before-school, after-school, and out-of-school services in their communities. 

Housing: Advocacy, capacity-building, and systemic change activities that result in 

individuals with DD having access to and use of housing and housing supports and 

services in their communities, including assistance related to renting, owning, or 

modifying an apartment or home. 

Recreation: Advocacy, capacity-building, and systemic change activities that result in 

individuals with DD having access to and use of recreational, leisure, and social 

activities in their communities. 

Transportation: Advocacy, capacity-building, and systemic change activities that result 

in individuals with DD having access to and use of transportation. 

Formal/informal community supports: Supports that enable individuals with DD to 

exercise self-determination, be independent, be productive, and be integrated and 

included in all facets of community life. They are designed to enable such individuals to 

control their environment; permit the most independent life possible; prevent placement 

into a more restrictive living arrangement than is necessary; and enable them to live, 

learn, work, and enjoy life in the community. Other supports may include early 

intervention services, respite care, personal assistance services, family support 

services, supported employment services, support services for families headed by aging 

caregivers of individuals with DD, provision of rehabilitation technology and assistive 

technology, and assistive technology services. 

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g. Leveraging Resources 

DD Councils have a broad and ambitious mandate that can only be met by leveraging 

their resources and developing strong partnerships with other network partners and 

state agencies. 

All DD Councils actively attempt to identify resources that are leveraged through grant 

investments. Leveraging can be as simple as a required grantee match or identifying 

long-term funds through ongoing sustainability investments made by other state, local, 

or private investment. 

5. Accomplishments 

Identifying the accomplishments of DD Councils on a national level is challenging. 

Because Councils have the flexibility to pursue different goals based on state needs, 

their accomplishments tend to be state-specific or localized. In addition, it is difficult to 

tease out the specific impact of Councils affecting systems change since so many 

forces are at work in the political and policymaking processes. Nevertheless, taken from 

a broad view, the activities of the DD Councils have had many accomplishments, 

including the following. 

a. Development of a National Council Network 

The DD Act, through the development of the DD Council structure, has created a 

national system of 55 state partners to identify issues, develop and implement 

strategies to address the issues, and advocate for state policy and system changes that 

will improve the lives of individuals with DD. This lively network shares ideas and 

innovations, provides Council-to-Council support and assistance, and serves as a 

mature resource for the nation. 

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b. Visibility 

Forty years ago, when the DD Act was first established, individuals with DD and their 

issues were hidden from public view. Through the efforts of Councils and other network 

partners, there is now a national effort to make sure that public policymakers, 

legislatures, and the populace at large clearly identify and address the needs and value 

of these individuals. 

c. Training of Self-advocates and Their Family Members 

One specific reason for the improved visibility of the needs of individuals with DD is the 

training of individuals, family members, and other interested community members to 

develop advocacy skills. These skills are targeted to a wide variety of venues: legislative 

action, school policy and practice, and representations of individuals in institutional 

settings, to name a few examples. 

The DD Council’s Partners in Policy Making and Youth Leadership Forum training 

activities have been very effective in creating advocacy skills and issue knowledge 

within the DD community, including individuals with DD, their families, and their 

advocates in the greater community. These initiatives, while originating in a single 

Council, are now used across the country by many types of Councils and have certainly 

had an impact on policymakers. 

d. Participation in National Disability Rights Activities 

DD Councils have participated in the national disability rights movement that has 

created dramatic changes in the lives of individuals with DD over the past 40 years. The 

State of the States in Developmental Disabilities study, funded by ADD, highlights some 

of the changes in the transformation of the service system from institution-based to 

community-based, and Councils have played an integral role in supporting these 

changes (Braddock et al., 2008): 

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e. Historical Trends 

● In 1989, community services spending in the United States first surpassed 

institutional (16+ people) spending. 

● During 1990–2006, inflation-adjusted community spending advanced an 

average 7 percent per year, while institutional spending declined 2 percent 

annually. 

● During 2000–2006, adjusted ICF/MR spending declined 1 percent per year, 

compared with 8 percent annual growth for the HCBS Waiver. 

● With considerable funding from the HCBS Waiver, combined spending for 

family support, supported employment, and supported living constituted 

2 percent of total intellectual disabilities/developmental disabilities (ID/DD) 

spending in 1988, advancing to an 18 percent share in 2006. 

● The number of people with ID/DD living in settings for six or fewer people 

advanced 14 percent per year during 1988–2006, compared with a 3 percent 

annual decline in settings for 16 or more people during that period. 

Braddock and colleagues also identify some states’ individual efforts in 2006. Again, 

these are all topical areas that are reflected in DD Councils’ areas of emphasis, though 

the results reflect the effect of myriad partners and influences. 

f. Fiscal Effort 

Maine, New York, Connecticut, North Dakota, and Rhode Island led the nation in fiscal 

effort for ID/DD services (state spending from all public sources on ID/DD community 

and institutional services per $1,000 of statewide personal income). 

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Supported Living 

The largest percentage gains in spending for supported living were reported in New 

Jersey, West Virginia, Louisiana, Wyoming, Iowa, Wisconsin, Virginia, Nevada, 

Massachusetts, and Hawaii. 

Supported Employment 

Strong programs were reported in Connecticut, Louisiana, Massachusetts, Oklahoma, 

and Washington. 

Family Support 

New Mexico, New Hampshire, and Arizona ranked as the top three in families 

supported per capita of the general population. 

Use of Waiver 

New York, California, Pennsylvania, Minnesota, and Florida had the largest HCBS 

Waiver programs, and supported more than 40 percent of the nation’s Waiver 

participants. 

Contraction of Public/Private Institutions 

Indiana became the most populous state to operate its ID/DD system without reliance 

on a state-operated institution for 16 or more people. 

6. Strengths and Weaknesses 

The DD Councils have certainly had an impact on the lives of individuals, communities, 

and state systems. In some cases, Councils’ strengths may also be their weaknesses. 

This section identifies both strengths and weaknesses, and areas where there are 

opportunities to change weakness into strength. 

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a. Positioning Within State Government/Independence from Interference 

The DD Councils’ positioning within government can be a strategic advantage, but can 

also show up as a weakness. If the governor is interested in issues related to DD, 

positioning within state government can be a tremendous advantage because it ensures 

a seat at the state policy table. The unique language identifying independence from 

interference of the governor and the state is also helpful, but can put the program in a 

very difficult political position, particularly if the Council chooses actions that are not 

supported by the governor and state agencies. 

b. Flexible Resources 

Each DD Council brings unique resources to its state DD community. The dollars, while 

small in comparison to the large state agencies it seeks to impact, are also flexible and 

can be tailored to the unique needs of the state. In some states, this is the only disability 

organization with funds that can be used for advocacy, training, demonstration, and 

applied research. 

c. Organizational Longevity 

Most DD Councils and their staffs have been working in their communities for almost 40 

years, and their mission is well known. Longevity and programmatic stability allow an 

organization to focus on their mission rather than on name-recognition. This is a 

strength, though occasionally the longevity may lead to institutional lethargy, which can 

weaken the Councils’ ability to move quickly and decisively. 

d. Ability to Set State-Specific Priorities 

The Act allows each state to set its own priorities through the development of the fiveyear plan. This creates an organizational environment that is free to address current 

and emerging state-specific needs as long as they fall within the broad categories of the 

areas of emphasis. 

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e. National Network Partnership 

The National Network created by the Act provides a structure in which the DD Councils 

collaborate and coordinate activities with the other two national partners: the UCEDDs 

and the PADD system. This network allows the Council to focus on advocacy, public 

policy development, and applied research and demonstration while its partners focus on 

broader research, the training of professionals to work in allied fields, and the extension 

of protection and advocacy services on both an individual and a class basis. 

f. System Navigation and Family Support 

The current federal/state service system for individuals with DD is large and complex. 

Some programs are designed specifically for individuals with DD (e.g., supported living), 

others serve the entire disability community (e.g., Americans with Disabilities Act 

awareness), and still others serve individuals with and without disability (e.g., job 

search). The DD Councils are small entities in a large sea of multibillion dollar agencies; 

however, they continue to fill a major void in the service delivery system. Their systems 

advocacy efforts at the state level can help to ensure that individuals with DD are 

treated fairly and effectively by the large specialized and generic service providers and 

that their voices are heard. 

7. Major Issues 

a. Governor’s Influence 

In situations where the governor is supportive of the goals of the Act, placement within 

the governor’s purview and his appointment of the DD Council members can be a great 

strength, but where the goals of the Act and the needs of individuals with DD are not a 

priority, the DD Council’s impact can be diminished. Although the state policy of 

noninterference addresses these issues in policy, the day-to-day life of the Council 

within this environment can be difficult. As mentioned previously, severe budget 

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cutbacks and personnel reductions are testing this principle and the value of placement 

of the Councils within government. 

b. Lack of National Leadership on Issues 

There are certainly issues that are important to all states, although DD Councils take a 

state-specific approach. ADD has yet to identify and advocate on a broad range of 

issues on a national level that would support the state-level initiatives in the same 

areas. These areas include community living, employment, housing, and education at 

all levels. 

c. Lack of Authority or Resources to Impact State and Federal Systems 

The DD Councils are a very small program with a mission to promote systemic change 

in very large state systems. In many states, the Council is an entity of less than 

$1 million responsible for changing the policies, programs, and funding mechanisms of 

state DD agencies with budgets approaching $1 billion. 

This is true in policy, practice, and resource allocation issues. Councils demonstrate 

new strategies and identify best practices but do not have the resources or the authority 

to have them included in the service systems’ actions. There is a structural disconnect 

between Councils and the system they are charged with changing, even if Councils 

sometimes manage to influence the larger system. 

d. Funding/Resources 

The prior review of the evolution of the DD Act documented the extent to which the 

mission and responsibilities of the DD Councils have continually expanded over the past 

several decades. In spite of these ever-expanding responsibilities, congressional 

support for the program has actually declined over the past 20 years (see Exhibit 3.2). 

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Exhibit 3.2 

Actual and Inflation-adjusted#

 Appropriations for Councils, 1984–2008 

# Actual refers to the nominal value of the appropriation, Inflation-adjusted refers to constant 2008 

dollars. 

Source: Author’s calculations based on State Councils appropriations reported in Graney, 2001; 

Sommers, 2008; and the Consumer Price Index for All Urban Consumers in BLS, 2009 

When inflation is factored in, appropriations for DD Councils peaked in FY 1987–1988 

at approximately $107 million and have declined steadily since. In contrast, during this 

same period appropriations for the PADD program gradually increased and have 

remained steady since FY 2001. Appropriations for the UCEDD programs are currently 

only available beginning in FY 2000. Since that time, inflation-adjusted UCEDD 

appropriations have increased steadily, from $23 million in FY 2000 to a present level of 

$37 million, an increase of more than 50 percent. On the other hand, inflation-adjusted 

funding for the Councils has steadily declined over the past 20 years, while the role and 

mission of the Councils has increased dramatically. 

Simultaneously, the size of the Medicaid-funded state DD service systems has 

increased exponentially, and Councils have been charged with advocating on behalf of 

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individuals with DD within an ever-growing system that is creating increasingly disparate 

outcomes between Waiver-eligible individuals who receive large amounts of services 

and other individuals with DD who are restricted from access to any level of service 

sufficient to meet their needs. Waiting lists for services have expanded to hundreds of 

thousands of individuals nationwide. In many states, the Council is actively involved in 

implementation of the Olmstead decision, which requires placement of individuals in the 

least restrictive community setting possible, even though the system fails to provide the 

services and supports necessary to allow this to occur. 

As the demands on the state DD systems continue to grow during hard economic times, 

it is imperative that Councils have sufficient resources to engage in the advocacy, 

capacity-building, and systemic change activities that are so critically needed. 

e. Need for Improved Technical Assistance to DD Councils 

Many DD Councils have done an outstanding job of engaging in collaborative activities. 

Councils are working closely with UCEDDs and PADDs in their states to coordinate 

systems change and demonstration activities. In addition to these coordination 

activities, in many states the Councils are very actively and successfully engaged in 

collaborative efforts with the major specialized and generic state agencies providing 

services and supports to individuals with DD, including special education, workforce 

development, transportation, housing, and vocational rehabilitation. 

Information collected during the study indicated that in a small number of states, the DD 

Councils have had difficulty engaging in the type of collaborative activities that will allow 

them to positively affect the policies and programs of the state DD agency and other key 

state service providers. Many interview respondents indicated that some Councils lack 

the technical and policy expertise to fulfill these important functions. 

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8. Current Monitoring and Evaluation Activities 

a. Performance Reported Through ADD Annual Report 

The 2008 ADD Annual Report identified a representative sample of 77 outcome 

measures listed in the Councils’ Program Performance Reports. It notes that DD 

Councils determine the issue area and outcome measures that will best serve the 

needs of their consumer population. Here are two examples of the outcome measure 

and the reported performance. 

Employment: Expanding the availability of job training, inclusive work environments, 

and job placement for people with DD. 

Thirty-seven Councils reported that they made employment more available or 

obtainable for 3,299 people with DD (ADD Web site, 2009). 

Education: Maximizing student potential to obtain the most complete education in the 

most inclusive environment possible. 

Thirty-eight Councils reported that they increased the knowledge, capabilities, and selfadvocacy skills of 24,263 students with DD and their families, ensuring that the schools 

they attend are providing inclusive, appropriate, and local educational opportunities 

(ADD Web site, 2009). 

The challenge of identifying effective outcome measures and accurately and 

consistently reporting performances in a meaningful way is clear. Each state must stand 

on its own merits, and performance may depend on state-specific issue areas and 

political and environmental challenges, as well as the way the Council chooses to 

quantify the number of people affected by a program or policy change. 

For example, of the 38 states that reported on the education goal, 5 reported assisting 

more than 2,000 students, while 8 reported assisting fewer than 20. The disparity is 

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caused in large part by an inconsistent interpretation of the metric. Given the lack of 

consistency between the data from different Councils and over different years, the 

quantitative data provides little valuable information beyond the number of Councils that 

are addressing each area of emphasis. 

b. Outcomes as Measured by GPRA Process 

Some of these issues are reflected in the national evaluation process utilized by 

Congress, HHS, and OMB monitored through the GPRA. This process monitors and 

evaluates the following outcomes for the Councils: 

1. Increase the percentage of individuals with DD reached by the Councils who 

are independent, self-sufficient, and integrated into the community. (outcome) 

Outcomes Achieved: 2006, 12.05 percent; 2007, 12.46 percent; 2008, 12.47 percent; 

goal, 0.1 percent annual increase 

2. Increase the number of individuals with DD reached by the Councils who are 

independent, self-sufficient, and integrated into the community per $1,000 of 

federal funding. (OMB-approved efficiency) 

Efficiency Achieved: 2006, 7.58 percent; 2007, 8.40 percent; 2008, 0.8.48 percent; goal, 

1 percent annual increase 

The report notes that measures like these are important because they attempt to 

measure impact and efficiency. However, the value of each measure is limited by the 

ability to define and measure independence, self-sufficiency, and integration into the 

community, and to isolate the people who are reached by the DD Councils. 

There have been issues related to data quality. Changes in the performance between 

2006 and 2007 reflected an attempt on ADD’s part to rein in data quality by working with 

the DD Councils to better define the performance elements being reported. ADD 

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continues to analyze the changes in performance in order to improve understanding of 

trends and ongoing technical assistance to the state DD Councils. 

It is clear that the identification of realistic and measurable goals for this program is a 

challenge. Application of consistent, clear definitions is an important first step. Impact is 

also very hard to measure using the tools currently available to ADD and their state 

partners. The GPRA reporting system is only a rough gauge of how well programs are 

actually performing. Nevertheless, it provides a long-term source for measuring trends. 

9. Promising Practices 

Councils all across the country are currently developing, implementing, and evaluating a 

wide variety of promising practices. The examples provided are designed to illustrate 

the scope of Council activities in the areas of leadership training, system advocacy, 

capacity building, and systemic change. 

a. Leadership in Policymaking 

Many DD Councils are highly engaged in developing the leadership and self-advocacy 

skills of individuals with DD and their family members. Minnesota took the lead in 

developing the Partners in Policymaking Program, which has now been replicated 

across the nation. This strategy engages self-advocates, parents, and others to learn 

about the policymaking process that affects their lives and to develop a set of tools that 

they can use in their efforts to influence human service and community systems in their 

state. 

In Florida, the DD Council has provided leadership on health care policy and was 

instrumental in the development of a 30-agency statewide advocacy effort, the 

Partnership for Work and Healthcare. The Partnership has been advocating for a 

Medicaid buy-in for Floridians with disabilities and other strategies that will improve their 

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health care access. The Partnership received funding and support from the Health 

Foundation of South Florida for two years. 

b. Leveraging 

Leveraging resources in the current fiscal environment is essential. The New York State 

Developmental Disability Planning Council reports that it has leveraged its $4,237,748 

ADD grant into $15,654,030 worth of services for individuals with disabilities in the state. 

For example, a $130,000 Council initiative funded the Office of Mental Retardation & 

Developmental Disability Housing Office to conduct a demonstration on utilizing the 

federal Low-Income Housing Tax Credit program for facilitating residential development, 

trained more than 90 housing staff from community based organizations, and resulted in 

six state-level tax credit projects of more than $12 million in residential development. 

There are multiple instances of similar returns on investment, and the return amounts 

cited by the Council are conservative at best. The Council surveys grantees for five 

years post-grant activity to follow continued support and sustainability. The Council 

does not currently have any authority or incentive to require post-grant survey response 

and typically averages about a 40 percent response rate, so typically the return on 

investment for leveraged funds is believed to be greater than reported. 

c. Systemic Change Activities 

The California DD Council convened self-advocates, parents, providers, state advocacy 

groups, and policymakers to produce a set of recommendations to address the 

employment crisis among people with developmental and other disabilities. Because of 

the Council’s efforts, the chair of the California Assembly’s Human Services Committee 

introduced legislation in 2008 incorporating many of the Council’s findings and 

recommendations on employment and set forth a new Employment Opportunities 

Initiative. Because of the Council’s work, employment (along with housing) is now the 

top priority among disability groups in California. 

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d. Demonstrating New Service Approaches 

The Virginia Board for People with Disabilities funded the Virginia State Government 

Employment Initiative, a project that promotes private and public partnerships to 

increase the employment of people with disabilities in state government agencies. As a 

result of this effort, 42 individuals with disabilities were hired in 2008–2009. This 

placement and training program will continue after the grant ends with state policies 

now in place, thanks to a governor’s Executive Order to make the disability awareness 

training a permanent part of human resources and management training for state 

employees. 

Another promising practice is the development of tools that can impact access and 

utilization of SSA disability benefits. The Massachusetts DD Council undertook an 

initiative to disseminate and train SSA beneficiaries to use a benefits planning calendar 

to help track their earnings and reporting requirements. It provides a mechanism for 

individuals to record earnings and deductible expenses, and store correspondence from 

and to SSA. The project provided calendars and training to 1,000 working and selfemployed beneficiaries in 2008 (National Association of Councils on Developmental 

Disabilities, 2008; New York State Developmental Disabilities Planning Council, 2008). 

10. Recommendations 

3.1 Congress should reaffirm the critical role played by the Councils in promoting 

the independence, productivity, and community integration of individuals with 

DD by raising the annual appropriations for Councils in order to restore the 

Councils’ capacity for systems advocacy and demonstration activities. 

3.2 Congress should direct HHS through ADD and the DD Councils to launch a 

major new initiative to identify, analyze, and describe eligibility and funding 

inequities in the current Medicaid and state DD system, and to work 

collaboratively with major federal partners, state DD agencies, and state 

Medicaid agencies to eliminate these inequities. 

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117 

3.3 ADD should redesign the required state plan development and reporting 

format for Councils, which focuses on activities in nine areas of emphasis, 

into a more relevant format that better reflects the systemic change, capacitybuilding, and advocacy roles of Councils and the long-term nature of their 

work. 
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CHAPTER 4. Protection and Advocacy for Individuals 

with Developmental Disabilities 

1. Introduction 

People with DD have rights established in the U.S. Constitution and through federal and 

state statutory laws and court decisions. These rights are empty in the absence of the 

ability to enforce them. The PADD program provides advocacy and legal support to 

enforce these rights and address issues of injustice. It is often at odds with other powers 

in the state, but is supported by the authority given to it by the DD Act. 

The DD Act of 1975 authorized $9 million ($25 million in 2009 dollars) for the PADD 

program. Although funding has grown to $40 million in 2009 (Administration on 

Developmental Disabilities, 2009a), this growth has not kept pace with the expansion in 

the purview of and demands on the PADD program. The program was originally 

designed to address the abuse and neglect of people in institutions. It has grown to 

address a broad range of issues for people in a variety of settings and provides a range 

of services, including individual advocacy and legal support, as well as systems 

advocacy and monitoring. 

As the advocacy movement continues to mature and the expectations of people with 

DD expand, PADD grantees are being called upon to address even broader issues in 

self-determination and choice. Because funding is so limited, each PADD grantee must 

set priorities and accept cases only if they fit within those priorities. 

In addition to variability in priorities and activities, many stakeholders and experts note 

that there is variability in the quality of the agencies. The term “quality” means different 

things to different people. Some stakeholders are concerned that some PADD grantees 

are not “aggressive” enough and fail to address systemic issues in the state. Others 

complain that PADD grantees focus too much on systemic advocacy and not enough on 

individual cases. Still others complain that programs ignore the rights and needs of 

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guardians or do not adequately monitor the health and well-being of individuals moved 

from institutions to community settings. 

Despite these complaints, stakeholders interviewed for this project, with the exception of 

representatives from Voice of the Retarded, believed that the PADD program as a 

whole, with its ability to pursue legal remedies, plays a vital role in enhancing the lives 

of people with DD and should be supported and expanded. 

Other disability groups and government agencies have also recognized the value in 

providing federal funds for protection and advocacy. Since the inception of the PADD 

program, seven other disability-related Acts have included funds for protection and 

advocacy (P&A). The P&A agencies that operate PADD and other protection and 

advocacy programs now combine their PADD funding with these other sources to 

provide a legal resource for people with a range of disabilities. 

The DD Act gives the PADD grantees substantial legal and investigative authority. 

These authorities are often ignored by state agencies and are under attack by some 

service providers and parents. To date, PADD grantees have been able to retain their 

authorities, but it can be costly and time-consuming. While most attacks occur at the 

state level, in March 2009 the debate moved to the federal level with Rep. Barney 

Frank’s (D-MA) introduction of HR-1255, which would limit the ability of a PADD to file a 

class action lawsuit against an ICF/MR. 

PADD’s advocacy, in conjunction with that of other organizations, has played a major 

role in the deinstitutionalization movement. PADD has litigated to ensure the ability of 

institutional residents to live in the community if they choose, and to improve the health, 

safety, and quality of life for people who remain in institutions. Since the PADD program 

began in 1977, the number of people living in large state institutions has decreased 

78 percent from more than 167,000. Nevertheless, 38,000 people continue to live in 

institutions, and neglect and abuse continues. Currently, almost 60 percent of PADD’s 

individual advocacy is devoted to education, raising the issue about whether the 

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program, with its limited funds, is able to meet its original intent of protecting people 

from abuse and neglect. 

This chapter addresses the question of whether the policy, structure, and administration 

of the PADD program are appropriate given the current needs of people with DD. It 

describes the background, goals, history, and operation of the PADD program and 

explores the program’s accomplishments, strengths, and challenges; ADD’s monitoring 

and evaluation efforts; and promising practices. 

2. Program Goals 

According to the DD Act of 2000, the PADD program is to protect the “legal and human 

rights of individuals with developmental disabilities.” The PADD has the authority to— 

● “[P]ursue legal, administrative, and other appropriate remedies or approaches 

to ensure the protection of, and advocacy for, the rights of such individuals 

within the State who are or who may be eligible for treatment, services, or 

habilitation, or who are being considered for a change in living arrangements, 

with particular attention to members of ethnic and racial minority groups.” 

● Provide information on and referral to programs and services addressing the 

needs of individuals with DD. 

● “[I]nvestigate incidents of abuse and neglect of individuals with developmental 

disabilities if the incidents are reported to the system or if there is probable 

cause to believe that the incidents occurred.” Abuse includes physical 

maltreatment, verbal harassment, and institutional practices that can be 

considered abusive. Neglect includes neglect of basic needs as well as failure 

to provide adequate treatment planning, discharge services, or community 

care. 

Congress intended that PADD-eligible clients and families have an important role in 

determining priorities. 

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3. History and Context 

The P&A concept was added to the DD Act in 1975 after a series of exposes by reporter 

Geraldo Rivera on the Willowbrook Institution in New York uncovered the appalling 

conditions at large institutions. Burton Blatt photographed one of these institutions on 

Christmas Day and published them in a book whose title summed up the situation: 

Christmas in Purgatory. Although the language in the statute was drawn broadly, the 

PADD systems were originally intended to protect people in facilities from this abuse 

and neglect. 

The mission of the PADD program has evolved over the years from addressing the 

protection of individuals with DD who lived in institutions to responsibilities that include 

protecting people with DD from abuse, neglect, exploitation, and violation of their legal 

and human rights in both institutional settings and the community. The DD Act of 2000 

added an emphasis on the “monitoring” role. 

The residential landscape for people with DD has changed dramatically since the 

inception of the PADD system in ways that have added challenge to meeting the PADD 

mandate. The number of residential settings in the United States increased from 11,008 

in 1977 to 167,857 in 2007. While the number of large state facilities decreased from 

327 to 200, the number of small settings (one to six people) increased from fewer than 

7,000 to more than 160,000 (Prouty, Alba, & Lakin, 2008). 

The legal landscape has also changed. Several court cases have affirmed the rights of 

people with DD, most notably Olmstead v. L.C., in which the Supreme Court found that 

the unnecessary segregation of individuals with disabilities in institutions may constitute 

discrimination based on disability under the ADA. However, courts have generally 

become more conservative in affirming states’ rights over federal mandates and school 

systems over parents. 

The establishment of the PADD system coincided with the passage of the Education for 

all Handicapped Children (the predecessor to the Individuals with Disabilities Education 

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Act, or IDEA), which gave children with disabilities the right to a “free and appropriate 

education” in the “least restrictive environment.” Although never explicitly required in the 

DD Act, most P&A agencies rightly expanded their role to include protecting the rights of 

students under IDEA. With more than 100,000 schools in 13,924 school districts in the 

United States (National Center for Educational Statistics 2009), advocating and litigating 

educational cases has become a substantial portion of the PADD programs’ workload. 

In advocating on behalf of individuals with DD in institutions, PADD programs have filed, 

joined, or intervened in class action lawsuits that have alleged inappropriate care and 

treatment, including abuse and neglect of residents, the rights of individuals with a 

disability to live in the least restrictive environment, and breaches of statutory and 

constitutional rights. Some of these lawsuits have resulted in moving individuals with DD 

from institutional care settings to group homes, apartments, and other community 

settings. While some parents and legal guardians of individuals involved in these suits 

have supported PADD efforts, a small but vocal group has opposed 

deinstitutionalization for 25 years and has advocated to limit the power of the PADD 

programs. At the request of Congress, GAO studied the issue. It found that only a small 

portion of PADD overall activities include litigation related to deinstitutionalization, and 

these lawsuits resulted in establishing quality assurance standards in institutions as well 

as downsizing or closing state institutions (U.S. Government Accountability Office, 

2003). 

Nevertheless, Congress is considering H.R. 1255, which would require that PADD 

programs provide notice before filing a class action against an ICF/MR on behalf of the 

residents and allow parents and guardians who oppose the suit to opt out on behalf of 

their ward. The provision is not consistent with the current federal rules of civil 

procedure or the rules governing class action lawsuits on behalf of people with other 

types of disabilities in other settings (such as people with mental illness in prisons or 

psychiatric hospitals, people with disabilities in nursing homes, or students with 

disabilities in schools). 

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4. How the Program Operates 

a. Intervention Strategies 

The P&A agencies are best known for litigating class action lawsuits. However, that 

strategy represents only a small portion of the activities of PADD grantees. PADD 

grantees work with individual clients to resolve specific issues (individual advocacy) and 

use a variety of systemic advocacy approaches to resolve underlying problems in the 

service delivery system. 

Given their limited resources, PADD grantees struggle with how to divide the resources 

between individual and systemic advocacy. Unfortunately, ADD’s reporting mechanism 

captures only casework and does not capture other activities of the PADD grantees, such 

as training, outreach, interaction with policymakers, legislative advocacy, monitoring that is 

not related to a specific case, and other activities related to systemic advocacy. 

As shown in Exhibit 4.1, PADD grantees report that they used litigation (including class 

action lawsuits) in only 5 percent of the individual casework they addressed in 2008. 

Exhibit 4.1 

Intervention Strategies Used in Individual Casework 

PADD program, 2008* 

Type of Intervention 

Number of 

Cases 

Percentage of 

Total Cases 

Short-term Assistance 6,556 33% 

Technical Assistance in Self-Advocacy 5,551 28% 

Negotiation 2,632 13%

Investigation/Monitoring 2,151 11%

Administrative Hearing 1,080 5% 

Litigation 889 5% 

Mediation/Alternative Resolution 867 4% 

Total 19,726 100%

Source: Administration on Developmental Disabilities, 2008a. 

*The definition of each level of service varies somewhat among states, so 

this data should be considered an approximation. 

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The National Disability Rights Network (NDRN) developed a “continuum of remedies” 

that describes the work of the PADD grantees more fully than the ADD reporting 

categories shown in Exhibit 4.1. The continuum (NDRN, 2006) includes the following 

strategies (with ADD reporting category shown in parenthesis). 

Training Consumers and Professionals (not reported) 

P&A agencies train individuals and professionals about the rights of people with DD. For 

example, some P&A agencies provide instruction to people with DD, parents, attorneys, 

service providers, police, government agencies, and others on a number of important 

topics. 

Self-Advocacy (Technical Assistance in Self-advocacy) 

The DD Act of 2000 directs PADD programs to provide training in leadership, selfadvocacy, and self-determination for individuals with DD, their families, and their 

guardians. These programs employ different approaches to achieve this goal. For 

example, PADDs work with people with DD to develop grassroots peer/self-advocacy 

groups in facilities and in the community, and hire self-advocates to help inform their 

peers about their rights and how to exercise those rights. PADD programs also provide 

information and training on how to advocate for specific rights. 

Counseling and Advice (Short-term Assistance) 

One-third of the people who contact the PADD program are served with short-term 

assistance (see Exhibit 4.1). Describing to clients what they are entitled to, providing 

them information on the topic, and making suggestions on how to advocate for 

themselves can solve many issues. 

Negotiation and Mediation (Negotiation) 

PADD programs will also approach an institution, service provider, or state agency to 

solve a problem. This kind of contact may involve formal or informal negotiation, or 

using mediation to address the issue. 

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Administrative Action (Administrative Hearing) 

Many laws require the use of an administrative approach to resolve matters. P&A 

agencies will follow the dictates of these laws and advocate for their clients’ needs 

through the administrative process. 

Individual Litigation (Litigation) 

If counseling and advice, negotiation and mediation, and administrative action are 

unsuccessful, P&A agencies can file suit on behalf of individuals. For example, PADD 

groups have filed suits on behalf of students who were denied access to their neighborhood 

schools, suspended or expelled because of nondangerous behavior caused by their 

disabilities, or being denied the community-based services to which they are entitled. 

Monitoring (Investigation/Monitoring) 

The DD Act of 2000 directs PADD groups to monitor services, supports, and assistance 

to people with DD to ensure that they do not experience abuse, neglect, exploitation, or 

violation of legal or human rights, and will not be subject to the inappropriate use of 

restraints or seclusion. 

As independent living opportunities increase, the challenges of monitoring and ensuring 

the appropriateness and safety of living arrangements also increase. Complicating the 

issue is that laws, regulations, and systems for protecting people with DD from abuse or 

neglect can vary significantly from state to state. 

PADD groups address their monitoring mandate by conducting direct investigations of 

facilities and other service providers; reviewing the investigations conducted by service 

providers themselves or state agencies; and intervening when the process or outcomes 

raise questions. They also analyze trends in reported incidents in facilities, regions, or 

across the state and make recommendations for changes in policies and practices; 

routinely monitor health and safety conditions at facilities; issue public reports about 

inadequate systems of care and oversight and public alerts about dangerous practices; 

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and work with policymakers at the state level to ensure that effective standards are 

implemented to address these issues. 

Interaction with Policymakers (not reported) 

The laws that are written have a profound effect on individuals with disabilities, from 

changes in health care and retirement to whether there are adequate funds to provide 

the needed supports and services for them to live in the community. PADD lawyers and 

advocates must work with policymakers to ensure that the laws that are enacted are in 

the best interests of individuals with disabilities. For example, they may be on state task 

forces on education to monitor policy and implementation regarding restraints and 

seclusion, or they may work with policymakers to ensure that appropriate credentials 

are required for direct service workers. PADD staff members also participate in a variety 

of nongovernmental commissions and committees. They can bring to bear their legal 

and advocacy skills to help craft legislation that will benefit individuals with disabilities. 

Finally, PADD groups will monitor and comment on regulations and policies that affect 

the rights of and services to people with disabilities. 

Class Action (Litigation) 

P&A agencies have the statutory right to file class action lawsuits to address systemic 

issues that affect a class of individuals with disabilities. These suits have argued for 

increased funding for home and community-based services, increased access to public 

transportation, accessibility of polling places, and systemic reform to provide legally 

required services to students with disabilities. In a report released in 2003, GAO 

identified 24 lawsuits that P&As filed, joined, or intervened in related to 

deinstitutionalization from 1975 through 2002. Most but not all were intended to be class 

actions concerning large public institutions providing services to people with mental 

retardation and related DD (U.S. Government Accountability Office, 2003). 

Legislative Advocacy (not reported) 

PADDs have promoted legislation that would require states to develop policies to 

reduce the use of seclusion and behavioral restraints in facilities, allow independent 

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assessor hired by parents to observe a child in his/her current educational placement, 

require additional slots in home and community-based waivers, ban sterilization without 

due process, address bullying and harassment in schools, and many other issues. 

b. Areas of Emphasis 

As shown in Exhibit 4.2, 59 percent of PADD clients accessed the system for educationrelated cases and another 26 percent for quality assurance. Employment, housing, 

transportation, recreation, and child care together accounted for only 6 percent of the 

cases. 

It is unclear whether this distribution of cases and allocation of resources represents the 

needs of the DD community in each state. A number of factors affect the type of cases on 

Exhibit 4.2 

PADD Client Cases by Areas of Emphasis, 2008 

Source: Administration on Developmental Disabilities, 2008b. 

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which each PADD grantee works. Some of these factors are observable. For example, the 

type of cases that a PADD grantee services is related to the priorities that it sets. If the 

priority-setting process represents the needs of the community, then the type of cases 

should also represent the needs of the community. However, if the priority-setting process 

fails to reach certain subpopulations, then their needs are likely to be omitted. 

Some factors are more subtle. P&A agencies respond to people who seek out services. 

If a P&A agency has a strong reputation within a particular community (e.g., the special 

education community or the Medicaid advocacy community), the agency is likely to 

attract more of those cases. P&A agencies also reach out to the community through 

education and training initiatives and information dissemination. The types of cases may 

reflect the type of outreach. 

Special Education 

PADD works with families and schools to enable students to receive the supports and 

services they are entitled to under IDEA. 

The United States spends $78 billion to educate the nation’s 6.2 million students with 

disabilities (Chambers, Parrish, & Harr, 2004). For those who meet the definition of DD, 

the P&A agency is an important legal advocate. Nationwide, 59 percent of the P&A 

cases address educational issues. This percentage varies among P&A agencies, from a 

low of 6 percent to a high of almost 90 percent. Some P&A agencies specifically limit 

education cases in their priorities because they are concerned that the demand will 

overwhelm their ability to take other cases. 

Quality Assurance 

Quality assurance includes protecting the rights of people with DD to live free from 

abuse and neglect and preserving their ability to make choices and have access to 

appropriate services and supports in the least restrictive setting. Quality assurance was 

the core mission of the PADD program at its inception in 1975. Currently, overall one129 
quarter of cases address quality assurance concerns, with the percentage ranging from 

5 percent in one state to 89 percent in another. 

Health 

Nationwide, 9 percent of PADD cases address health issues. PADD grantees are asked to 

intervene when a family believes that they are not receiving Medicaid services for which 

they are eligible or that Medicaid has denied them access to specialty care or durable 

medical equipment. Health cases range from none to 47 percent across different states. 

c. Funding 

Formula Grant 

Each year, the congressional appropriation for the PADD program is divided among the 

existing PADD grantees based on a mathematical formula. In comparison to a 

competitive grant program where the office would need to recompete for the funds 

periodically, the formula grant guarantees the PADD grantees a somewhat stable 

source of funding and allows them to build capacity, take on long-term casework, and 

develop relationships with the state and advocacy communities. 

Although this funding guarantee is critical to the viability of the PADD program, it 

increases the importance of the federal oversight role. In a competitive grant process, 

the prospect of competition would provide an incentive for an underperforming PADD 

grantee to enhance its services; if it failed, the grant could shift to another entity. As 

discussed in Section 6, unfortunately, ADD has not established any standards of 

performance and does not rigorously evaluate the quality of the agencies. 

Multiple Sources of Funding 

In 2009, each PADD grantee was allotted between $375,316 and $3.35 million from the 

DD Act (Administration on Developmental Disabilities, 2009b). Each agency combines 

this allotment with funds from seven other federal programs (Exhibit 4.3). Each source 

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of funding is used to serve the populations designated by the enabling legislation. This 

fragmentation has several drawbacks. 

Exhibit 4.3 

Sources of Funding for Protection and Advocacy 

Program 

Year 

Established Agency 

FY 2008 

Appropriation

(in $ millions) Target Population 

Protection and Advocacy for 

Persons with Developmental 

Disabilities (PADD) 

1975 ACF/DD $38.7 Developmental 

disabilities 

Protection and Advocacy for 

Individuals with Mental 

Illness (PAIMI) 

1986 SAMHSA $34.8 Individuals with 

mental illness in all 

settings 

Protection and Advocacy for 

Individual Rights (PAIR) 

1993 RSA $16.2 Individuals with 

disabilities who are 

ineligible for PADD or 

PAIMI 

Protection and Advocacy for 

Assistive Technology 

(PAAT) 

1993 RSA $4.26 Individuals with 

disabilities who need 

assistive technology 

Protection and Advocacy for 

Beneficiaries of Social 

Security (PABSS) 

1999 SSA $7.0 Social Security 

beneficiaries who 

want to work 

Protection and Advocacy for 

Individuals with Traumatic 

Brain Injury (PATBI) 

2000 HRSA $2.9 Individuals with 

traumatic brain injury 

(TBI) 

Protection and Advocacy for 

Voting Access (PAVA) 

2002 ACF $5.3 Individuals with 

disabilities face who 

want to vote 

Client Assistance Program 

(CAP)* 

1984 RSA $11.5 Clients/applicants of 

projects funded under 

the Rehabilitation Act 

Sources: Information collected from National Disability Rights Network (u.d.) and Consortium of Citizens 

with Disabilities (2008). 

In addition to the federal funding sources, some P&As receive funds from state agencies and private 

donations. 

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d. Setting Priorities 

While the PADD grantees have a broad mandate, they tend to have insufficient 

resources to respond to all of the needs of their constituents. The DD Act and other 

P&A statutes require each P&A to set priorities annually using a process that maximizes 

consumer input. 

Each P&A uses a different approach to identifying priorities. According to an MTARS 

report, one state conducted regional forums, surveyed clients, analyzed the client 

database from the previous year, reviewed the needs assessments conducted by the 

UCEDD and state Council, reviewed other P&A priorities, and solicited input from the 

PAIMI advisory council (Administration on Developmental Disabilities, 2005). Other 

states rely on less comprehensive approaches. 

The priorities must be approved by the governing board (advisory councils for state 

agency P&As and Boards of Directors for private nonprofit P&As). Under the DD Act of 

2000, a majority of each PADD governing board must be individuals with DD, their 

parents, family members, or other representatives. Prior law required only that the 

board must include such individuals. ADD has not undertaken an evaluation that 

assesses the role of consumers and families on the PADD governing boards. 

5. Accomplishments 

Legal representation is such an important judicial concept that one of the primary 

achievements of the PADD program is to ensure that people with DD have a voice. For 

the past 30 years, this group has had (in varying degrees) access to representation to 

give it a voice to challenge the service systems on which it depends. Although it is 

difficult to attribute specific changes in the DD system to the PADD program, in the past 

30 years— 

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● Through use of class action lawsuits and other legal and advocacy 

approaches, PADD grantees have been a major factor in the closure of some 

institutions and improving conditions in others. 

● The PADD program has played a major role in enforcing special education 

rights. 

● The PADD program has helped to raise the discussion about adequate 

provision of community-based care to a civil rights issue. 

In 2008, PADD grantees served almost 24,000 clients (Administration on 

Developmental Disabilities, 2009b). More than 90 percent of cases are closed with the 

complaints corrected (Office of Management and Budget, 2008). 

6. Strengths and Weaknesses 

The existence of an agency that carries with it the implicit threat of legal action plays a 

critical role in quality assurance. P&A directors relay stories of clients who were having 

difficulty getting access to services, but as soon as the P&A agency called, the problem 

was solved. As one consumer said, “the name makes people do things.” Despite this 

inherent strength, there are some complexities. 

a. Authorities 

The DD Act grants PADD grantees expansive legal and investigative authorities. 

However, the authorities are controversial and have been contested in both policy 

debates and court decisions by individuals and groups that believe that current law 

grants PADD groups too much authority to investigate and litigate on behalf of 

individuals with DD. 

Investigative Authority 

The DD Act grants PADD groups access to “all records of ... any individual with a DD” 

provided that certain conditions such as probable cause are met. But several cases 

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have limited that authority. For example, in Disability Law Center of Alaska v. 

Anchorage School District,

1

 a court held that the PADD grantee was not entitled to the 

names of the parents of 10 children who had allegedly been abused in a special 

education classroom, on the grounds that, among other things, the Family Education 

Rights and Privacy Act prohibited disclosure. The Alaska decision is in direct conflict 

with the position taken by HHS and DOE (the federal agency that enforces the Family 

Educational Rights and Privacy Act),2 as well as the opinions of the Second Circuit in 

Connecticut Office of Protection and Advocacy v. Hartford Bd. of Ed.

3 and the Seventh 

Circuit in Disability Rights Wisconsin v. Wisconsin Department of Public Instruction, 463 

F.3d 719 (7th Cir. 2006). The Alaska case is currently on appeal to the Ninth Circuit 

Court of Appeals. 

In addition, the standing of PADD groups to bring suit on behalf of individuals with DD is 

increasingly being challenged (see Missouri Protection and Advocacy v. Carnahan4 and 

ARC of Dallas v. Dallas Mental Health and Mental Health Retardation Center 5). 

Although many PADD groups have been able to withstand these challenges, they have 

had to expend significant time and resources to establish their standing and protect the 

rights of individuals with DD who may be retaliated against if they tried to enforce their 

rights on their own. 

At times, the investigative authority appears to conflict with other federal laws. For 

example, providers claimed that the Health Insurance Portability and Accountability Act 

(HIPAA) prohibited them from giving records to PADD groups that were investigating 

abuse and neglect. The HHS Office of Civil Rights put the issue to rest when it issued a 

directive that HIPAA permits a covered entity to disclose protected health information, 

without the authorization of the individual, to a state-designated P&A system, to the 

extent that such disclosure is required by law and the disclosure complies with the 

requirements of that law. 

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Legal Authority 

The legal standing and authority of PADD is not established as clearly in the DD Act as 

are PADD investigative authorities. The role of PADD agencies in class action lawsuits 

is controversial, and parties differ on what constitutes a “class.” In an Illinois case (Ligas 

v. Maram), the court originally affirmed that individuals with DD who are housed or at 

risk of being housed in residential institutions can constitute a class. However, after a 

settlement was reached between the plaintiffs and the state, the court received a 

significant number of objections to the consent decree and determined that the class 

definition was too broad because it did not restrict the class to individuals with DD who 

are “eligible for, and desire, community placement.” 

The ability to bring suit against the state agency is an important power for the P&A 

agencies, but it has been challenged by several state agencies. The issue is currently 

under review in the courts and the outcome is uncertain. In the 2009 Virginia Office for 

Protection and Advocacy v. Reinhard, the Fourth Circuit Court ruled that state law 

prohibits the suit and that the Federal Government (e.g., the DD Act) cannot dictate 

whether one state agency can sue another within the state, but in the 2010 Indiana 

Protection & Advocacy Services v. Indiana Family & Social Services Admin., the 

Seventh Circuit Court expressly disagreed with the Virginia decision. In June 2010, the 

Supreme Court agreed to review the case, so this important issue may be resolved. 

b. Administrative Structure 

Of the 57 P&A programs, 47 are nonprofit organizations and the remaining 10 are part 

of state governments. Theoretically, state P&A agencies may have much more access 

to government officials and can use their access for more informal advocacy in ways 

that are not readily available to nonprofit programs operating outside of government. 

The situation might also provide some financial benefit, as the state may cover some of 

the administrative costs. However, theoretically, it is impossible to be independent of the 

state if the P&A agency is part of the state and may be reluctant to sue the state 

135 
because it is afraid of the repercussions, or fears that the state may try to impede a 

PADD intervention. 

Although available evidence does not suggest that state P&A agencies are bowing to 

pressure from their states, in the past 20 years nine P&A agencies have changed their 

designation from a state agency to a private nonprofit, and others report that they are 

considering this action. 

c. Fragmented Funding Structure 

Historically, this fragmented funding structure led agencies to work in disability-specific 

silos. However, most P&A agencies have restructured and now work on issues in crossdisability teams (e.g., housing, education, abuse) rather than having discrete staff serve 

people with a specific disability. However, the fragmentation continues to have 

drawbacks. 

Accountability 

As P&A agencies reorganize along issues and away from divisions dictated by funding 

source, P&A staff must carefully account for their time, and each federal program must 

monitor the time allocation to ensure that their populations are receiving services to the 

extent possible given the funding level. NDRN and others have developed software to 

assist in this task. The funding provided by each piece of legislation is not necessarily 

proportional to the size or needs of the corresponding population, which creates tension 

when P&A agencies must limit services because of insufficient funding. 

Duplication and Efficiency 

Each federal agency has its own reporting, monitoring, and evaluation requirements that 

are consistent with its respective legislative and administrative needs. In addition, 

depending on their administrative structure, P&A agencies may have reporting 

requirements imposed by the state or the Internal Revenue Service. These multiple 

136 
reporting requirements consume resources that could otherwise be allotted to client 

services. 

Under the prior administration, ADD was working with other federal agencies and OMB 

to develop consistent reporting forms. However, no document has been produced that 

meets the needs of the funding agencies. 

Additional Resources 

NDRN has advocated for additional funding sources for specific purposes, including 

IDEA (through DOE); autism (through the Expanding the Promise for Individuals with 

Autism Act of 2007, S.937/H.R.1881); returning veterans and military families of active 

duty, National Guard, or Reserve personnel (through the Department of Defense); 

emergency preparedness; and housing. This approach would exacerbate the 

fragmentation but would bring additional resources to the P&A system. 

d. Coordination with Other Agencies 

A variety of state and federal entities are charged with protecting consumers against 

abuse and neglect and ensuring appropriate access to services. State entities include 

quality assurance mechanisms in the DD agency, adult protective services, and state 

departments of education. Federal entities include DOJ, HHS, DOE, and DOL. 

The DD Act gives PADD grantees investigative authority that is not available to other 

entities and, as a result, they are a vital part of the quality assurance system. However, 

their resources are insufficient to investigate and monitor all cases. Some P&A agencies 

have found that rather than investigating individual cases, they can have a more 

significant impact by investigating the investigators and holding the state agencies 

responsible for outcomes. 

The weak federal oversight of quality in state departments of education, state Medicaid 

agencies, and state workforce development systems puts additional demands on the 

137 
PADD grantees. Currently, ADD does not actively pursue the strengthening of these 

mechanisms. 

7. Major issues 

a. Funding Level 

In 2009, Congress authorized $40 million for 57 PADDs to safeguard the rights of 

4.5 million children and adults accessing $44 billion in residential and related community 

services (Braddock et al., 2008) and participating in a $50 billion special education 

program (Chambers et al., 2004). 

Education 

As shown in Exhibit 4.2 above, 58 percent of P&A clients are requesting assistance on 

education issues. IDEA explicitly grants rights to students and parents. However, DOE 

does not have the authority to provide an enforcement mechanism. As a result, a 

significant portion of PADD and PAIMI funds are used to enforce these rights, leaving 

less funding to address issues in health care, education, employment, housing, 

transportation, and within the juvenile and criminal justice systems. 

Monitoring 

The DD Act of 2000 added monitoring to the list of responsibilities of the PADD 

grantees. However, the additional responsibility was not accompanied by additional 

funding. 

Broader issues 

As self-determination becomes a reality for people with DD, the PADD grantees are 

facing issues such as the client’s opportunity and/or right to get married, have children, 

and retain custody of those children. They have litigated cases concerning sterilization, 

parental rights, and unneeded plenary guardians. Unfortunately, these types of cases 

are very resource intensive and, without additional funding or a reduction in 

138 
responsibilities in other areas, PADD grantees will not be able to fully address the 

issues. 

b. National Policy for People with DD 

The absence of a consistent policy toward people with DD across federal agencies 

affects the work of the PADD grantees. For example, recently DOJ intervened in a case 

regarding abuse in a large residential facility in Texas (the “fight club” case), and is 

asking the state to spend $150 million to hire 1,100 staff to upgrade the quality of care 

in state institutions. Although the DOJ Settlement Agreement with the state of Texas 

includes a reference to the Olmstead decision and contains language in support of 

personal preference and community integration, the main focus of the DOJ remedy was 

on improving institutional care, and was not balanced by equal attention to ensuring that 

the state’s citizens have the community supports and services necessary for real choice 

between living in an institution and living in the community. 

PADD systems are often asked to intervene in Medicaid cases in which ICF/MR care is 

an entitlement but home- and community-based care is a waiver service. This practice 

runs counter to rights detailed in the DD Act. 

c. Support from ADD 

Despite the access authority granted by the DD Act, some state agencies deny the 

PADD grantee access to records, facilities, and death reports. To gain access, the 

grantee may need to file suit. Although they often win, the process takes resources and 

time away from pursuing other cases. In addition, the outcome of the process is very 

uncertain. As noted above, the Fourth and Seventh Circuit Courts have provided 

conflicting decisions on the right of PADD grantees to exercise their congressionally 

mandated authority to access records in death investigations at state institutions 

(Virginia Office of Protection and Advocacy v. Reinhard and Indiana Protection and 

Advocacy v. Indiana Family and Social Services).6 At the writing of this report, the issue 

is in the hands of the Supreme Court. Congress established PADD groups to 

139 
investigate allegations of abuse and neglect of individuals with DD. If they are unable to 

go to court to enforce their access authority, their congressionally mandated authority to 

investigate abuse and neglect and take steps to protect individuals with DD will be 

rendered meaningless. 

In 2005, OMB noted in the PART evaluation of a related PADD program, “The 

program’s effectiveness is limited by uneven cooperation from the States. The program 

could more effectively use its resources if States had greater understanding of and 

acknowledged the program’s rights to access facilities, consumers, and information 

involved in incidents they investigate” (OMB, 2005). 

ADD project officers do not involve themselves in these conflicts. Additional federal 

leadership in this area is needed. 

8. Current Monitoring and Evaluation Activities 

Anecdotal evidence suggests that the quality and effectiveness of PADD services vary 

among states. Some provide needed legal protection for people with DD by effectively 

combining proactive strategies (e.g., educating consumers about their rights, advocating 

for and with groups of consumers for better services throughout the disability system) 

and reactive strategies (e.g., serving individuals who seek out PADD services through 

advocacy and litigation). Others have less comprehensive approaches. 

PADD grantees are for the most part reactive entities, and they operate in different 

policy environments. Thus different approaches are expected. For example, a state with 

no institutions and strong quality assurance measures embedded in community services 

may engage in less litigation than a state with many large institutions or a weak service 

delivery system. 

Interpreting quantitative data can be challenging. A large number of service requests 

may indicate that the PADD has a strong program to educate consumers about their 

140 
rights and a strong reputation in the community. Alternatively, it may indicate that the 

PADD is failing to stave off problems by advocating for system-level change. 

Although setting performance standards and identifying underperforming agencies is a 

difficult task, it is critical that ADD hold the programs accountable and require remedial 

action when needed. No other entity has a vested interest in enhancing the strength of a 

PADD grantee. The P&A agency is designated by the governor, but the governor lacks 

an incentive to maintain a strong agency that can sue the state or demand legislative or 

administrative actions. The DD Act includes language to ensure that a governor cannot 

redesignate a P&A agency solely because it is too aggressive with the state, but there is 

no protection for the population against an ineffectual P&A agency. 

Unfortunately, the ADD monitoring system does not provide this protection for people 

with DD. ADD requires that each PADD grantee submit annual performance reports 

with quantitative as well as qualitative “performance measures,” and participate in the 

monitoring and technical review process once every 10 years. The value of the annual 

performance report as a way to compare activities across states is plagued by some 

technical issues such as the lack of a definition of terms (e.g., the difference between 

“intake and referral” and “short-term assistance”). More important, however, is the 

absence of a standard to determine if the PADD grantee is performing adequately. 

Congress, HHS, and OMB monitor PADD programs through the GPRA and PART 

process. The success of a program is measured by an “increase in the percentage of 

individuals who have their complaint of abuse, neglect, discrimination, or other human 

or civil rights corrected, compared to the total number of individuals assisted.” Currently, 

more than 90 percent of cases are corrected (OMB, 2008). However, this indicator is 

not, in and of itself, an accurate measure of the progress of the PADD program with 

respect to its mandate, since it focuses exclusively on individual representation and 

does not measure systemic change. 

141 
9. Promising Practices 

This section describes some promising practices that maximize the impact of the P&A 

agencies, given their limited funds. 

a. Information and Referrals 

The Disability Rights Network in Pennsylvania receives roughly 10,000 phone calls per 

year. A well-trained support staff collects background information, identifies the issue, 

and enters the information into a database. Several times a day, the calls are distributed 

among a team of three to four attorneys and five nonattorneys who return the call. A 

supervising attorney retrospectively reviews some of the legal advice for accuracy. 

Often, the caller’s needs can be met with a short conversation and information from the 

network’s large collection of written resources. Using this approach, all callers receive 

some level of support. 

b. Self-advocacy Skills 

Equip for Equality in Illinois has set up a dedicated Special Education Clinic/Helpline for 

parents to access accurate, up-to-date information about their students’ rights, their own 

rights and responsibilities, and legal advice and alternative options that they should 

consider to resolve differences with schools. Once parents have a basic understanding 

of a school’s legal obligations in a specific situation and are given strategies to use in 

advocating for their student with school personnel, the vast majority can resolve the 

problem without further involvement of attorneys. 

c. Individual Litigation 

Disability Rights Mississippi filed a class action lawsuit against the public transportation 

system, including the paratransit system in Jackson, MS. The case advocated for 

accessible bus stops, working lifts on buses, and proper scheduling of paratransit 

142 
buses. The lawsuit was ongoing at the writing of this report but has already resulted in 

new lifts on all buses and some improvements in paratransit scheduling. 

10. Recommendations 

4.1 Congress should increase funding for the PADD program to meet the growing 

need for advocacy services of people with DD. 

4.2 Congress should establish and authorize funding for a P&A program specific 

to IDEA, to be administered through DOE, to meet the critical need for legal 

advocacy related to education for children with DD. 

4.3 Congress should require that ADD and the other five agencies that fund the 

PADD systems streamline their reporting requirements and progress 

indicators so that scarce resources can be used for client services. 

4.4 Congress, in the next reauthorization, should preserve legal and investigative 

authorities embodied in the DD Act. Specifically, it should (1) ensure that the 

authorities are not superseded by state or other federal laws, (2) clarify that 

all PADD grantees, regardless of whether they are state or nonprofit entities, 

have the authority to enforce their access authority in court against both 

public and private providers, and (3) oppose legislation that restricts the legal 

authority of the PADD program to represent residents of institutions. 

4.5 If a state does not comply with the DD Act section 143, to provide access to 

records, the HHS Secretary should hold ADD accountable for using its 

authority to support PADD grantees. Furthermore, the Secretary should 

request sufficient resources during the budget process to ensure that ADD 

can achieve its mandate. 

143 
144 

. 
CHAPTER 5. Projects of National Significance 

1. Introduction 

Under Title I of the DD Act, ADD may award grants, contracts, or cooperative 

agreements for Projects of National Significance to “support the development of national 

and State policies that reinforce and promote, with the support of families, guardians, 

advocates, and communities, of individuals with developmental disabilities, the selfdetermination, independence, productivity, and integration and inclusion in all facets of 

community life of such individuals.” Using this authority, the ADD can become an 

incubator for new ideas. It can provide short-term (one to five years) resources to DD 

network partners and other public and nonprivate entities to demonstrate new ideas that 

could become service models in the future. 

Over the years, funding has been used for projects related to areas such as people with 

DD and the criminal justice system, homeownership, employment, inclusive education, 

assistive technology, family support, emergency preparedness, youth development, and 

self-advocacy. 

PNS funds are also used for technical assistance to Councils, PADDs, and UCEDDs; 

support for small offices such as the HHS Office of Disability Policy and President’s 

Committee for People with Intellectual Disabilities; efforts to pursue federal interagency 

initiatives; and other projects that the ADD believes are needed to meet some of the 

increasing requirements of the Act. 

For the past 30 years, PNS funding has also been used for data collection, analysis, 

and dissemination. This consistent funding has yielded data sources that allow the DD 

community to explore changes over time and disparities between states in 

expenditures, institutionalization, supported employment, and several important service 

areas. Advocates, experts, and DD network partners agree that these sources have 

145 
provided invaluable support for systems change. However, several aspects of the 

program limit its impact. 

First, the PNS program is authorized at a substantially lower level than Congress 

intended when it first included it in the DD Act of 1975. At that time, “special project 

grants” were authorized at $18 million (the equivalent of $72 million in today’s dollars). 

In 2009, Congress appropriated $14.2 million for PNS, requiring funds to be used for 

family support projects, including the National Clearinghouse and Technical Assistance 

Center on Family Support. When combined with existing obligations for technical 

assistance, data projects, and prior year grants, few funds are left to test innovative 

models and address emerging issues. 

Second, the ADD Commissioner has broad discretion in identifying PNS priorities and 

determining how the budget should be spent. While this may be expedient, some 

stakeholders believe that a more transparent and consultative process would yield a 

better use of the money. 

Third, PNS projects have yielded important contributions to the field. However, the 

impact of the program could be more substantial if the projects were better publicized 

among other network partners and the public so that they could stimulate further 

research and replication. 

The sustainability of the program after the PNS funding ends has not been addressed, 

and there is no significant support for evaluation, dissemination, and replication. 

2. Program Goals 

The purpose of the PNS program is to “provide grants, contracts, or cooperative 

agreements for projects of national significance that support the development of 

national and State policies that reinforce and promote, with the support of families, 

guardians, advocates, and communities, of individuals with developmental disabilities, 

146 
the self-determination, independence, productivity, and integration and inclusion in all 

facets of community life of such individuals.” The Act specifically mentions family 

support activities, data collection and analysis, technical assistance to entities funded 

under subtitles, and other projects “of sufficient size and scope that hold promise to 

expand or improve opportunities for such individuals.” 

3. History and Context 

Since 1975, the DD Act has authorized funding for projects to develop and demonstrate 

innovative strategies to address national needs for people with DD, their families, and 

the systems that serve them. In the early days of the program, scores of PNS projects 

were undertaken. From 1976 to 1978, 715 special project grants were awarded—so 

many, in fact, that the Administration produced an annual compendium. Each was 

modest in size and funding, but projects in areas such as postsecondary education in 

community colleges and early childhood education showed substantial foresight. 

In the late 1970s and early 1980s when the nation faced a recession, several 

researchers undertook data collection efforts to track expenditures and residential 

options for people with DD that could be used for advocacy purposes. PNS has 

continued to fund these programs, and they have produced a valuable description of the 

funding and deinstitutionalization effort over the past 25 years. 

4. How the Program Operates 

The DD Act gives ADD broad authority to choose priorities. It specifies 16 areas of 

potential funding, including family support, data collection and analysis, information and 

referral, self-advocacy, education for policymakers, federal interagency initiatives, 

participation of people from diverse racial and ethnic groups, and youth transition. With 

limited funding allocated to PNS, ADD has not been able to fund projects in all areas. 

147 
The ADD Commissioner, under the usual limitations of the Federal Advisory Committee 

Act and federal grant-making rules, identifies current and emerging needs, based on 

themes that surface from conferences and ad hoc conversations with stakeholders and 

network partners, and from priorities of the Administration on Children and Families. 

ADD then publishes a program announcement and network partners, as well as other 

qualified organizations, are eligible to bid. In some cases, the ADD Commissioner has 

the discretion to use PNS funds without going through a competitive bidding process. 

This process is relatively new. Prior to the 2000 reauthorization, the DD Act required 

that the PNS priorities be published in the Federal Register and open for a 60-day 

public comment period before ADD released a program announcement. 

Historically, ADD funded a few projects in each of many priority areas. For example, 

between 1998 and 2001 projects included inclusive outdoor play-spaces for children 

with DD; domestic violence and other crimes against people with DD; empowerment of 

girls of color with DD; Web-accessible information on state Medicaid programs for 

people with DD and their families; the College of Direct Support, the Quality Mall, 

Project Leadership, and NCI projects; self-advocacy for people with DD; and end-of-life 

care for people with DD (Grantsmanship Center, 2009; Swenson, personal 

communication, 2009). More recently, ADD has funded a larger number of projects in 

fewer priority areas and has been more prescriptive in defining the approach that each 

grantee should take. 

5. Accomplishments 

It is difficult to attribute long-term outcomes to small projects. At the time of this study, 

no system was evident to track the evolution of a project from a small research or 

demonstration through dissemination and replication. Nevertheless, several projects 

have evidence of success: 

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● State of the State, National Residential Information System Program, and 

Study of Financial and Programmatic Trends have provided advocates, 

policymakers, and researchers rich sources of information about the impact of 

federal and state fiscal policy and illustrate important service delivery trends 

in community living, public and private residential institutions, community 

supports, and support employment. The data, which provides national data as 

well as state-by-state comparisons, has been used by Congress, the courts, 

and in many state policy settings. As one advocate said, “Braddock and 

others using the PNS funds are able to capture critical statistics and we are in 

an age where statistics are the pieces that we need in order to educate policy 

makers on how far we’ve come and, more importantly, how far we’ve yet to 

come.” Given the paucity of data about specific disabilities available from 

most federal sources, these projects are vital resources and unique among 

disability communities. 

● Anecdotal evidence suggests that the early childhood education movement 

that led to Part C of IDEA started with 12 demonstration programs that 

identified some of the methodologies and benefits of working with young 

children. People with DD and family members were clearly involved with this 

early movement. 

● The family advocacy movement was strengthened by the Partners in Policy 

Making program and by the Home of Your Own Project, which established 

mechanisms for people with DD to buy their own homes. 

6. Strengths and Weaknesses 

The flexibility that the PNS affords the Commissioner is both a strength and potential 

limitation of the program. On one hand, it gives ADD the ability to respond quickly to 

issues as they emerge and to solicit innovative ideas. For example, ADD was able to 

respond to an idea generated by the youth movement and established the youth 

information and training centers. On the other hand, the process lacks transparency. 

149 
150 

In addition, the small PNS grants are not well known, which limits the follow up and 

quick diffusion of many of these ideas. Engaging more stakeholders and DD network 

partners in the process of identifying PNS priorities would elevate recognition of the 

program and aid in the dissemination of the ideas. 

7. Major Issues 

Two major issues currently limit the PNS program: 

First, the intent of the PNS program is to harness the creativity of the network partners, 

as well as the broader community, to generate innovative ideas. As shown in 

Exhibit 5.1, in 2009 (as in other recent years) a large part of the PNS budget has been 

allocated by Congress to Family Support and dedicated by ADD to the Family Support 

360 programs, significantly limiting the funds available for other projects or approaches. 

Second, even for projects that show promise, there is often no funding from other 

sources for continued exploration or implementation when the short-term ADD funding 

of the project runs out. When PNS started, many states had the flexibility to adopt a new 

experimental approach with their “state-only” budgets for services to people with 

intellectual and DD. However, now that most services are funded by Medicaid, states 

have much less flexibility. 
Exhibit 5.1

Projects of National Significance, 2009 

Program Description 

Funding Level 

(estimate) 

Family Support (discussed in Chapter 6) 

Family Support 360 26 grantees (including four military bases) develop 

and implement local one-stop family support 

centers. 

$6 million 

National Clearinghouse 

and Technical 

Assistance Center 

Develops and maintains National Clearinghouse 

and Technical Assistance Center on Family 

Support. 

$1 million 

Ongoing Data Collection and Information Dissemination 

State of the States in 

Developmental 

Disabilities 

Ongoing annual data collection and analysis of 

public financial commitments and programmatic 

trends in state DD services and supports. 

$300,000 

The National 

Residential Information 

System Program 

Ongoing annual data collection and analysis of 

state and national statistics on residential services 

for people with DD. 

$300,000 

State of the States in 

Developmental 

Disabilities: 2007–

2011, A Nationwide 

Study of Financial and 

Programmatic Trends 

Ongoing collection, analysis and dissemination of 

state-level data on employment services, 

outcomes, and economic status of people with DD. 

$300,000 

Youth Programs 

Youth Information, 

Training, and Resource 

Centers 

21 grantees (15 in 2004–2007) design and 

implement centers projects that assist youth and 

emerging leaders with DD with transition, 

empowerment, and advocacy issues 

$2.5 million 

Medicaid 

The Medicaid 

Reference Desk 

Maintains and expands a Web-based interactive 

information resource of state and national level 

Medicaid information for adults and children with 

DD, their families, and others. 

$150,000 

Technical Assistance and Other PNS Budget Items 

Technical Assistance Technical assistance (TA) to UCEDDs, Councils, 

Family Support 360, and Youth Information and 

Training Centers. 

$2.2 million 

Developmental 

Disabilities Program 

Performance 

Evaluation (DDPIE) 

External Evaluation of the UCEDD, P&A, and state 

Council programs as recommended by the 

Performance Assessment Rating Tool (PART). 

$1.5 million 

Program Support PNS program administration (monitoring and TA). $562,000 

Sources: ADD Web site and Administration for Children and Families, 2009 

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8. Current Monitoring and Evaluation Activities 

The goal of most PNS projects is to demonstrate a new idea and assess whether it 

merits additional research and replication. Unfortunately, measuring the ultimate impact 

of these types of programs is plagued by an issue that is shared by many federal 

grants. The Federal Government has not established a system that can track an idea 

from research or small demonstration through additional research, larger demonstration, 

small-scale dissemination, and eventually full-scale implementation. As a result, 

although PNS projects predated some of today’s accepted practices, the system lacks 

“hard evidence” of the projects’ exact role. 

ADD monitors the programs to ensure that they meet their contractual obligations and 

requests that the projects evaluate themselves. However, most projects are not 

evaluated for their effectiveness. 

a. Monitoring and Technical Assistance 

ADD uses several approaches to monitor the PNS grantees: 

● ADD requires grantees to provide quarterly and semiannual reports that 

identify accomplishments and challenges. To the extent possible given their 

current staffing level, ADD provides technical assistance in response to these 

identified challenges. 

● ADD has contracted with Technical Assistance Centers to provide state-tostate TA for multisite projects (family support and youth transition). 

● Grantees participate in quarterly TA conference calls and share their 

accomplishments and challenges with ADD. 

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b. Evaluation 

ADD requests that grantees develop logic models and other methods to evaluate their 

program. However, the demonstrations are not required to have an evaluation 

component. Although the lack of evaluation limits access to information about the 

usefulness and impact of a project, in general, requiring evaluation in the design of the 

demonstration is costly. Without additional funding, an evaluation component could 

consume a large portion of the grant funds. 

In the multisite demonstrations, a number of small entities are testing slightly different 

models within the context of different state environments. Teasing out the lessons 

learned and promising practices is not an easy task. Other federal entities such as CMS 

(HHS) and ODEP (DOL) use the use the Technical Assistance Centers to perform some 

of these evaluation tasks. Unfortunately, the Technical Assistance Centers are not 

contracted to take an active role in evaluating the grantees or the programs as a whole. 

At the writing of this report, ADD has no additional plans to evaluate the PNS program, 

as it is not included in the DDPIE evaluation. 

9. Promising Practices 

Stakeholders and experts consistently identified four PNS projects that had a significant 

impact on service delivery and systems change: 

a. State of the States in Developmental Disabilities 

With 25 years of data collection, this project allows state-by-state examination of the 

effects of important societal events such as the Olmstead decision. Although data is 

affected by state differences in eligibility definitions, as well as imprecision and 

inconsistencies in state data collection practices, the information allows an unparalleled 

examination of national trends across multiple years (Stoneman, 2009). 

153 
The State of the States project has produced more than 170 articles contributing to the 

field’s understanding of the evolving character of DD service delivery systems in the 

United States, including eight books, 28 book chapters, 49 journal articles, 67 

monographs and technical reports, nine congressional and judicial testimonies, and 10 

newsletters and brief reports. The project’s research findings have also been 

disseminated through an extensive program of 439 presentations delivered in 43 states 

and seven foreign countries (Coleman Institute, undated). 

b. Residential Information System Project 

For more than 25 years, the National Residential Information System Program (RISP) 

has gathered, maintained, and disseminated annual state-by-state and national 

statistics and other program- and policy-relevant information on residential and 

Medicaid-financed services for people with DD. RISP is the principal national source of 

annual statistics on residential and Medicaid services for people with DD, and as such it 

is widely used in policy development, evaluation, and advocacy. RISP gathers and 

disseminates national and state-by-state statistics on state and nonstate institutional 

and community- and home-based residential services for people with DD by size, 

operator, and type of living arrangement; recipients of and expenditures for Medicaid 

ICF/MR, HCBS, and Nursing Facility programs; and people waiting for services. It 

conducts periodic special surveys of state DD directors. For example, in 2009 it is 

collecting information about the number of children with intellectual or developmental 

disabilities living in places other than their family home or a family foster setting. RISP 

also conducts analyses of existing data sets, such as the National Core Indicators 

Survey, to examine the associations between personal characteristics, living 

arrangements, financing and support models, state and other factors on inclusion, selfdetermination, well-being, and other outcomes. 

RISP maintains clearinghouses of information and resources on community living costs 

and outcomes and the direct support workforce. Its information collection and analysis 

activities are supported by a comprehensive dissemination program of annual reports, 

Policy Research Brief, Community Services Reporter; the QualityMall.org Web site; the 

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“Trends and Milestones” feature in Intellectual and Developmental Disabilities; and 

other publications and presentations. The Quality Mall provides Web-based information 

on person-centered supports in 20 “stores” and 78 “departments.” It has 1,700 products 

and averages 12,000 visitors per month. RISP also provides ongoing technical and 

informational assistance to government agencies; professional, advocacy, and provider 

organizations; individuals; families; the media; researchers; and others. These activities 

ensure ongoing access to current information on the status, trends, and outcomes of 

residential and Medicaid-financed services and on effective and innovative policies and 

programs for their delivery. The vast majority of RISP publications are disseminated 

online at no cost through the Institute on Community Integration Web site 

(http://ici.umn.edu/) or through the Research and Training Center on Community Living 

Web site (http://rtc.umn.edu/main). 

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

Employment Services for Citizens with Intellectual and Developmental Disabilities 

For 20 years, the Access to Integrated Employment project has described trends and 

issues related to employment and day supports for individuals with intellectual and 

developmental disabilities. The project goal is to contribute to a comprehensive 

understanding of the factors that influence employment outcomes at individual, 

employment support, service provider, and state policy levels. Funded by ADDs, the 

project has taken an approach that considers multiple perspectives, including a regular 

survey of state DD agencies, periodic surveys of community rehabilitation providers, 

case studies of high-performing states, and descriptions of state-level promising 

practices. This varied approach, along with secondary analysis of data from other 

sources, including the Rehabilitation Services Administration, the U.S. Census Bureau, 

DOL, and SSA, has allowed the project to both describe trends and explore the factors 

that influence employment outcomes. 

Since 2006 core data from the project has been available at www.StateData.info. This 

Web site allows users to create custom graphs and tables at the state and national 

levels covering a 20-year period. The annual companion State Data report, the National 

155 
Report on Employment Services and Outcomes, provides a comprehensive overview of 

the status of employment and economic self-sufficiency for individuals with intellectual 

and developmental disabilities in print and PDF formats. 

The Access to Integrated Employment trend data and case studies of high-performing 

states provided a catalyst for the development of the State Employment Leadership 

Network (SELN). ICI formed the SELN in partnership with the National Association of 

State Directors of Developmental Services. Sixteen state intellectual and developmental 

disabilities agencies are currently members, with a commitment to developing policy 

and strategy that improves employment outcomes. Nationally, data suggests that since 

2001 the percentage of agency customers engaged in integrated employment has 

begun to decline, but some states have achieved significant results. Over the past 

several years, there has been a growth in attention to employment outcomes, including 

the development of employment-first policy at the state level. ICI has supported and 

informed policy change at the state and federal levels, and researchers, policymakers, 

and advocates request custom data analyses. Project data has supported policy and 

advocacy, including informing the leadership of the Alliance for Full Participation’s 

initiative on employment. 

d. Partners in Policymaking 

The Minnesota DD Council created a model of leadership training designed for selfadvocates and parents. Partners in Policymaking provides timely and current 

knowledge about disability issues and teaches its participants the leadership skills they 

need to become effective advocates in influencing policy at all levels of government. 

The program has been replicated in 47 states, and by 2007, more than 15,000 people 

have graduated from the program. Many are now part of a growing national and 

international network of community leaders serving on policymaking committees. Many 

report that the program has enabled them to be more successful in their personal 

advocacy for more inclusive school environments, community employment, in-home 

supports, and other services (MN Governors Council, 2007). 

156 
e. Home of Your Own 

In 1993, ADD funded demonstration projects in three states to offer technical assistance 

to people with DD and their families in securing homes of their own and developing 

replicable approaches to identify resources and strategies. ADD expanded the program 

by entering into a five-year cooperative agreement with the Institute on Disability at the 

University of New Hampshire to build coalitions of people with disabilities, families, 

representatives of financial institutions, housing and disability organizations, and human 

services providers. The result was the creation of a national information and technical 

assistance center on homeownership, control, and personalized support, and a 23-state 

National Home of Your Own (HOYO) Alliance. From 1993 to 1999, Alliance members 

assisted more than 900 individuals to purchase homes (Klien, 2000). 

Two aspects of the HOYO initiative were especially promising practices. First, it did not 

rely predominantly on ADD; rather, it facilitated access to existing private and 

Government resources from Fannie Mae, U.S. Department of Housing and Urban 

Development, Federal Home Loan Banks, and private mortgage companies. By 1996, 

Fannie Mae had developed a new mortgage product, Home Choice, tailored specifically 

to the needs of people with disabilities. The Fannie Mae Home Choice coalitions that 

have developed around the country are built on the HOYO coalitions. Second, as part of 

their strategic plans, each state established outcome measures to evaluate the 

effectiveness of their work. Outcome measures included the number of individuals 

owning their homes, policy issues that needed to be addressed, ongoing technical 

assistance needs, and public awareness needs. 

10. Recommendations 

5.1 ADD should develop a transparent system for identifying PNS priorities that 

includes consumers, policymakers, and network partners. 

157 
158 

5.2 ADD should develop an evaluation approach to track the follow up and 

outcomes of PNS programs in order to identify their effectiveness and the 

value of PNS grants. 

5.3 ADD should fund additional data collection initiatives in areas such as health 

care access, direct care workforce issues, and educational outcomes. 
CHAPTER 6. Family Support 

1. Introduction 

The majority of the approximately 5 million Americans with intellectual and 

developmental disabilities live at home with their families. Although many families find 

strength in having a member with a disability, having such a member may also impose 

significant physical, emotional, and financial demands. 

Providing support to families can reduce the need for costly, unnecessary, and 

unwanted out-of-home placements and can allow the family to guide the member with a 

disability toward achieving life goals. However, although family support programs exist 

at both the state and federal levels, they are generally underfunded, fragmented, and 

restrictive. 

Title II of the DD Act of 2000 was supposed to provide systems change grants to states 

to address some of these underlying problems. Although it was authorized, it was never 

funded. However, beginning in 1999, ADD received appropriations of $5–$6 million for 

PNS that were earmarked for family support initiatives to pursue statewide systems 

change consistent with Title II. ADD used the PNS funding for three initiatives: 

● Demonstration grants to states: ADD gave states wide latitude in designing 

and developing these initiatives, which tended to be consistent with Title II 

and focused on statewide systems change activities. However, since the 

grant program was never evaluated, it is not possible to assess if any results 

were achieved. The extent to which the initiatives had a long-term impact on 

state policy or were sustained beyond the grant funding period is unknown. 

● Family Support 360 program: The Family Support 360 program funds onestop centers for families. The program grantees are meeting the goals 

identified in the program announcement and are helping the families they 

serve. However, stakeholders express significant concerns about the 

159 
program. First, by providing direct services to a small number of families 

rather than targeting statewide systems change, it is inconsistent with the 

intent of Title II. In addition, the programs are not well integrated with existing 

federal and state family support programs and do not address the most 

compelling issues facing the family support movement. 

● National Clearinghouse and Technical Assistance Center on Family 

Support: In 2008, ADD funded the Academy of Educational Development to 

develop the National Clearinghouse and Technical Assistance Center on 

Family Support. The program has the potential to help families learn about 

available services and supports and to strengthen the ability of families to 

influence family support policy. However, some stakeholders believe that the 

program would have had a wider audience had it coincided with and 

supported the other two family support initiatives. In addition, in 2008 ADD 

funded a contractor for two years, but no plan is in place to evaluate the 

efficacy of the technical assistance initiative to determine whether the funding 

should continue beyond 2010. 

This chapter provides a short history of family support and Title II of the DD Act; reviews 

ADD family support programs; and recommends actions that Congress, ADD, and other 

federal agencies should consider to strengthen the nation’s approach to supporting 

families. 

2. Program Goals 

Title II of the DD Act of 2000 authorizes ADD to make grants to states to “support 

systems change activities designed to assist states to develop and implement, or 

expand and enhance, a statewide system of family support services for families of 

children with disabilities” [42 USC 15093] (emphasis added). 

160 
3. History and Context 

Family support consists of a range of services or supports, including direct cash 

payments to families and vouchers, reimbursement, or direct payments to service 

providers, that helps people with disabilities and their families achieve the following 

goals: 

● Assisting families to stay intact until such time as the minor member with a 

disability becomes an adult and leaves the family home; 

● Enabling families to provide needed supports at home to their family member 

with a disability; 

● Assisting families to enhance their family quality of life and be included in their 

communities; and 

● Assisting families as they guide the member with a disability toward 

achievement of the nation’s goals for people with disabilities: equal 

opportunities, economic self-sufficiency, independent living, and full 

participation (Beach Center, 2007). 

It generally includes the following types of services: 

• Assistive and medical technology 

• Medical and related professional 

services, including specialized 

therapies 

• In-home assistance (personal care 

services, homemaker support, nursing 

services) 

• Behavioral supports 

• Case management/service 

coordination 

• Cash subsidy/financial support 

• Crisis intervention 

• Home modifications 

• Psychological/emotional support 

(counseling, parent-to-parent, sibling 

support, self-help groups, etc.) 

• Family education and training (disability 

information and/or advocacy training) 

• Financial and life planning assistance 

• Prevocational training/supported 

employment 

• Recreation/leisure (day, evening, 

summer day camp, sleep away camp) 

• Respite 

• Transportation 

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Family support has proven to be an effective approach to reducing out-of-home 

placements (Heller & Caldwell, 2005). Nevertheless, only a fraction of public long-term 

spending is directed toward family support initiatives. In 2006, $2.3 billion, or 6 percent 

of community DD funding (5 percent of total intellectual and developmental disabilities 

spending) was allocated to family support services across the nation (Braddock et al., 

2008). As one stakeholder said, “the service system rests on the back of family 

caregivers who by and large receive nothing. When the family can’t do it anymore, we 

spend thousands and thousands of dollars a year on residential support. This 

expectation that families can just provide care for decades and decades without support 

is just not smart.” 

Prior to the 1970s, families had only two choices: place their loved one in an institution 

or assume the responsibility for their family member with no government assistance. 

Over the past three decades, fewer people have chosen institutions, and federal and 

state governments have moved toward establishing systems to support children and 

adults living at home. 

In the early 1970s, Pennsylvania developed one of the earliest state-funded family 

support initiatives for children with intellectual disabilities, and over the next two 

decades, all other states and the District of Columbia fielded some type of family 

support for children. Each offered different types of services and supports, but most 

intended to do “whatever it takes” to ensure that children could grow up with their 

families. 

Although all states have family support initiatives in either cash subsidy or other family 

support activity, there is wide variation in services, service options, and spending. In 

2006, more than 426,000 families received family support services nationwide, with the 

average spending per family ranging from $232 per year in Alabama to over $10,000 in 

12 states (Rizzolo, Hemp, Braddock, & Schindler, in press). 

The language in Title II of the DD Act of 2000 was originally developed in 1994 as the 

Families of Children with Disabilities Supports Act of 1994. The language was 

162 
formulated at a time when state-funded family support programs were in their infancy. In 

the meantime, family support has evolved in the following areas. 

a. Expansion of Target Population 

Most state programs were originally designed for families who have children younger 

than 18 with disabilities. Many have expanded to include families who have adult 

members with disabilities living in the family home. 

The expansion into a different population requires a rethinking of the nature of families. 

The two populations (families of children and families of adults) need not only different 

types of supports but also different philosophies. For families of young children, family 

direction is a key principal. For families of adults, the key principal may be self-direction. 

b. Growth in the Demand for Services 

The number of people with DD has grown, as has the number living with their families 

well into their adult years, creating an unprecedented demand for services. 

c. Wider Variation in the Age of Caregivers 

Because states are increasingly targeting individuals from birth to any age and people 

with disabilities are living longer, families include support givers of varying ages, some 

young and others past retirement age. 

d. Increasing Cultural Diversity 

The intellectual and developmental disabilities community is becoming more culturally 

diverse, which requires that service systems accommodate varying languages and 

customs. 

163 
e. Evolution of the Meaning and Structure of “Family” 

A person with intellectual and developmental disabilities may live in a “traditional” family 

with two parents and perhaps brothers and sisters, or may live in a household headed 

by a single parent, siblings, grandparents, or other extended family members. 

f. Change in Expectations 

Family support services have historically been provided and directed by public and 

private service agencies. More recently, consumers, families, and advocates have 

demanded that services be more consumer-centered or consumer-directed. Twentyfour states have responded by establishing consumer-directed cash subsidy programs, 

and Medicaid allows states to develop consumer-directed options (Braddock et al., 

2008). 

g. Increased Reliance on Medicaid 

States have been trying to maximize the federal funds for family support by expanding 

their use of the Medicaid Home and Community-Based Waiver authority. As a result, 

Medicaid has become the primary provider of family support. In 2006, the waiver 

financed 70 percent of all family support services in the United States, almost triple the 

proportion it funded in 1998 (Braddock et al., 2008; Parish et al., 2000). 

As states rely more heavily on Medicaid to fund in-home supports, family support 

services are changing. Medicaid will fund only certain types of services, thereby limiting 

the state’s ability to do “whatever it takes” to keep the family together. In fact, Medicaid 

does not pay for family support per se since the Medicaid beneficiary—not the 

beneficiary’s family—must be the recipient of services. 

164 
h. Addition of Other “Players” in the Service System 

Other federal and state agencies provide services important to families of people with all 

types of disabilities, including DD. (1) The Supplemental Security Income (SSI) program 

provides cash assistance to families who meet financial eligibility requirements and who 

have children with severe disabilities. (2) Part C of IDEA authorizes state and local 

educational agencies to provide appropriate early intervention services, including other 

supports such as parent training and family resource centers. (3) The Rehabilitation Act 

offers independent living and home care services to people with disabilities in some 

states. (4) Temporary Aid to Needy Families offers a range of family support services to 

families eligible for the program. (5) The Department of Housing and Urban 

Development, in combination with local housing authorities, may provide subsidized 

housing. (6) The Department of Labor funds some targeted job-training programs. Each 

program has its own application procedures and eligibility requirements. As a result, 

families are challenged to learn what programs are available, how to access them, and 

how to coordinate their services across multiple agencies. 

i. Increased Attention to Parent/Caregiver Training and Family-to-family Groups 

and Networks 

A variety of federal agencies provide funds to help families understand and navigate the 

fragmented system. (1) SAMHSA funds small Statewide Family Network grants for 

families of children with mental illness. (2) The Maternal Child Health Bureau funds 

family-to-family health information centers through the Title V block grant for Children 

with Special Health Care Needs. (3) AoA funds the National Family Caregiver Support 

Program, targeting caregivers responsible for someone over age 60 or caregivers who 

are at least age 60 and are responsible for a child or a person with a disability. (4) AoA 

and CMS jointly fund the Aging and Disability Resource Centers to help families 

navigate the long-term care system. (5) State Departments of Education often have 

family support networks to involve parents in the education system. 

165 
4. How the Program Operates 

No funding was appropriated for Title II. However, in 1999, Congress appropriated 

$6 million in Title I of the DD Act for PNS. Through committee report language, 

Congress directed these funds for states to develop statewide systems of family support 

consistent with Title II. Using these funds, ADD has launched three family support 

initiatives: Demonstration grants to states, the Family Support 360 program, and the 

National Clearinghouse and Technical Assistance Center on Family Support. 

a. Demonstration Grants to States 

Between 1999 and 2003, ADD funded 54 family support projects nationwide, including 

projects in 49 states, four U.S. territories, and the District of Columbia. The size of the 

grants varied between $100,000 and $200,000 per year for one to three years. States 

had wide latitude in designing and developing initiatives that would enhance the 

statewide system of support for families of individuals with disabilities. 

b. Family Support 360 Programs 

ADD awarded grants to UCEDDs, state agencies, and nonprofits to develop familydriven, one-stop family support centers targeting unserved or underserved populations. 

In 2003, ADD funded 31 planning grants, and in 2004, 21 of these grantees were 

awarded $250,000 per year for five years in implementation grants. ADD also awarded 

nine planning grants in 2004, but insufficient funding prevented any of the grantees from 

receiving implementation grants. 

Each of the 21 implementation projects is required to work with at least 50 targeted 

families a year. Project personnel work with each family to determine the services 

needed and the best way to access those services. Families participate in writing a 

family service plan, which describes the services they may receive as well as the steps 

to be taken to secure the services. Through the plan, families may be assisted with a 

broad range of needs such as accessing health care, child care, early intervention, 

166 
education, employment, marriage education, transportation, housing, respite care, and 

assistance in maintaining parental rights. In 2008, ADD began funding four five-year 

Family Support 360 projects for military families on bases. 

c. National Clearinghouse and Technical Assistance Center on Family Support 

In 2008, ADD launched a Center to develop and disseminate information to families of 

children with disabilities. During the two-year grant period, the Center is to provide 

leadership training to help families become “informed and knowledgeable partners in 

working with State and local agencies in designing, expanding and improving familycentered policies and practices” (Administration on Developmental Disabilities, 2008c). 

In September 2008, ADD entered into a two-year $1.9 million cooperative agreement 

with AED to develop a National Clearinghouse and Technical Assistance Center on 

Family Support (FedBizOps.gov, 2008). AED is to assess the technical assistance 

needs of families of children with disabilities and address these needs by providing 

expert knowledge and leadership development using multiple dissemination methods. 

AED is expected to proactively disseminate information, especially to unserved and 

underserved populations, as well as respond to questions and requests from families 

who contact the Center (Administration on Developmental Disabilities, 2008c). In 

addition, AED is to develop teams of family members in each state who will be “the next 

generation of family support” and provide technical assistance and support to these 

teams to develop and implement family support action plans for their community or 

state. 

5. Accomplishments 

Together, the three independent initiatives do not represent a coherent approach to 

realizing the goals of Title II. However, the family support programs have provided 

information, training, and other forms of technical assistance to families of people with 

DD. Examples are as follows: 

167 
a. Demonstration Grants to States 

Based on a review of ADD documentation (Administration on Developmental 

Disabilities, 2001), states pursued the following initiatives:

● Modified laws and policies to expand the availability of family support and 

developed family-centered policies (e.g., a family support Medicaid waiver, 

policy guidelines for family support programs, increased cash subsidies); 

● Provided information and training to parents for better access and effective 

use of available supports (e.g., awareness of what supports are available, 

how to work with collaborative teams, how to manage resources in a 

consumer-directed cash subsidy program); 

● Developed family leadership to become more involved in the policymaking 

process (e.g., develop family councils, provide information and technical 

assistance); and 

● Developed and support family-to-family networks to share information on 

family support, advocacy, and systems change. 

ADD did not track the outcomes of these initiatives. As a result, it is unclear 

which, if any, had lasting impacts. 

b. Family Support 360 Programs 

In FY 2008, the Family Support 360 programs received $4.1 million and provided 

comprehensive assistance to 1,426 families. An additional 4,681 families benefited from 

casual assistance and various Center activities. “Family navigators” worked with 

families to blend together resources around families involving supports from public 

agencies, various community resources, and the families themselves. In addition, the 

Centers developed opportunities for families to provide support to one another (Agosta, 

Melda, & Bradley, 2009). 

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c. National Clearinghouse and Technical Assistance Center on Family Support 

AED established the Family Support Center on Disabilities: Knowledge & Involvement 

Network in January 2009. To date, it has established a Web site with information, links 

to other resources, and forums. The grantee has recruited 411 people for state action 

teams, provided technical assistance to the teams, and convened a conference for state 

team members. The Web site is set up to function as a centralized location where 

families and people with disabilities can access information about resources, and the 

state action teams provide a mechanism for people to become involved and connect 

with other families. 

6. Strengths and Weaknesses 

a. Demonstration Grants to States 

The demonstration grants allowed states to experiment with different options to address 

the most compelling issues facing family support in the state. The grant program was 

consistent with Title II of the DD Act and had the potential to affect change. However, 

the demonstration grants were never evaluated. So it is not possible to report on their 

impact, their sustainability, or the lessons learned from the experience. 

b. Family Support 360 Programs 

The grantees identified and tapped a wide range of community resources. Using peer or 

family navigators, grantees were able to help families access multiple social service 

systems such as Medicaid, food stamps, housing assistance, and energy assistance. 

They found that navigators could harness community resources to complement 

government-provided services. 

However, the initiative had some major limitations: 

169 
● The initiative was not consistent with Title II of the DD Act. Title II specified 

that ADD should provide grants for statewide systems change activities. The 

Family Support 360 projects provided direct service to a relatively small 

number of people in local areas. 

● The projects had limited family and state DD agency collaboration. With only 

a few exceptions, state DD directors had little or no interaction with the Family 

Support 360 programs. ADD did not maximize the potential partnership 

between the Family Support 360 programs and state DD programs. 

● The projects were required to adhere to a one-stop concept that constrained 

their flexibility to experiment with other models. While the one-stop concept 

had a great deal of value, stakeholders noted that the opportunity to 

experiment with different types of models was not realized. 

c. National Clearinghouse and Technical Assistance Center on Family Support 

Information for families is scattered among many government and nongovernment 

service providers, advocacy groups, and other entities, with no central repository of 

information that is easily accessible to families. As a result, the Center had the potential 

to fill an important gap. However, it is not well integrated with other ADD family support 

initiatives. ADD has opted not to continue funding the Center beyond the original twoyear grant. 

7. Major Issues 

The title was never funded. 

170 
8. Current Monitoring and Evaluation Activities 

a. Demonstration Grants to States 

ADD required grantees to produce annual reports, but it does not appear that the 

grantees were closely monitored, and ADD did not evaluate the programs. 

b. Family Support 360 Programs 

ADD required the grantees to produce quarterly reports and monitored the reports to 

ensure that grantees were meeting the requirements of the request for proposals (RFP) 

and to identify additional technical assistance needs. ADD, and its TA contractor 

BETAH Associates, Inc., facilitated conferences, webinars, and work groups to address 

the information needs of grantees and navigators. Because the programs were 

designed as short-term demonstration projects, they were not included in the formal 

independent evaluation. As a result, their impact is unknown. 

c. National Clearinghouse and Technical Assistance Center on Family Support 

No evaluation component was included in the Center plans. 

9. Promising Practices 

A number of the state demonstration grantees and Family Support 360 programs have 

provided valuable support to the people they reached. A practice can be seen as 

promising if it is easily replicable or sustainable beyond the end of the ADD grant 

funding. The fact that a program can sustain itself or garner funding from another entity 

indicates that consumers view the program as having value. 

The funding for grantees ended in September 2009. At the writing of this report, it was 

unclear which programs would be able to find ongoing support. ADD identified the 

following models as either easily replicable or likely to find support: 

171 
a. Family Navigators Located with Local Programs Model 

In Colorado, family navigators are located in the same office as the staff of Denver 

Options, who work with Temporary Assistance for Needy Families recipients. 

b. Culturally Sensitive Mobile Services Model 

The New Mexico grantee has partnered with a Native American nonprofit organization 

to provide an array of culturally appropriate services and supports. Project staff 

members travel to five participating Pueblos, working with tribal leaders and visiting 

families in their own homes. This project also recognizes the sensitive need to balance 

tribal sovereignty with state and federal laws. 

c. Faith-Based Model 

The Minnesota grantee subcontracted with a church in a low-income area to promote 

the availability of the services and resources of the Center. This model builds on the 

natural community and resources of the church. 

d. Leveraging Medicaid Waiver Funds 

The Division of Developmental Disabilities in South Dakota administers the grant 

program, People Leading Accessible Networks of Support (PLANS). The state has hired 

five professional coordinators in different regions to assist families to develop a plan to 

access a broad range of supports and services in their communities. PLANS offers a 

limited pool of funds for direct services. The state intends to continue the PLANS 

program beyond the end of the ADD grant funding by using Medicaid Waiver funds. 

10. Recommendations 

Each state is at a different stage in its development of family support services. Given 

this variability, states and localities should be allowed to pursue different approaches. At 

172 
the same time, it is possible to identify overarching goals and strategies that are 

relevant for all states and could be the core of a refocused effort to ensure that the 

system supports families of children with DD. 

Family support services, policy, and philosophy have evolved since the mid-1990s, 

when the family support provision was originally written. It is important to Title II to 

consider both the type of programs it supports and the guidance it can give to state DD 

agencies as they modify their family support systems. 

6.1 ADD should convene a meeting of experts, stakeholders, and government 

representatives to identify changes in family support services, policy, and 

philosophy that have occurred since the family support provision was written 

and recommend changes to Title II before the DD Act is reauthorized. 

6.2 Congress should provide direct funding of Title II to ensure that funds are 

used consistent with the intent of the Act, rather than funding family support 

through PNS. The funding should be at a level of at least $15 million. 

6.3 ADD should coordinate through intra- and interagency groups, i.e., involve 

other HHS agencies, divisions, and external federal partners that are working 

on family support issues. 

173 
174 
CHAPTER 7. Direct Support Workers 

One of the greatest challenges to providing community supports for people with DD is 

finding and retaining qualified direct support workers (DSWs). Some call DSWs the 

“backbone of the long-term care system.” DSWs provide services in residential settings, 

family homes, their own homes, community job sites, vocational and day training 

settings, schools, and other settings. The positions may include special education 

paraprofessionals, supported employment counselors, community home staff, home 

health aides, and a host of other position titles. Their jobs require them to help children 

and adults with DD with basic health and self-care needs, but they also play a central 

role in assisting people with DD to gain skills, participate in community life, develop 

social relationships, make decisions and judgments, and become more independent. 

The absence of reliable data to measure the supply of DSWs who work in a variety of 

settings makes it difficult to quantify the extent of the shortage and turnover rates. 

However, estimates suggest that 625,000 DSWs support people with DD. The vacancy 

rate is 6 to 17 percent, and the turnover rate is 52 percent per year (Hewitt & Larson, 

2007). 

This shortage is expected to be problematic over time as the need for services 

increases. The growing U.S. population, increasing life expectancy for people with DD, 

aging of family caregivers, national commitment to and steady expansion of communitybased and home services combine to increase the demand for DSWs. Factors affecting 

the shortage and high turnover rate of qualified DSWs include low wages, few benefits, 

lack of recognition, and the lack of quality training and career advancement 

opportunities. 

Between the high turnover rate and the expanded need for services and supports, DD 

programs need to recruit and train more than 300,000 DSWs per year nationwide. With 

Medicaid accounting for almost 80 percent of total spending for DD through waivers, 

ICF/MR, and related Medicaid spending (Braddock et al., 2008), involvement by the 

175 
CMS and the state Medicaid agencies can have an impact on Medicaid spending and 

quality of care. 

This challenge is not unique to people with DD and their families. Community care 

services for people who are aging or have physical disabilities or mental 

illnesses/psychiatric disabilities also rely on DSWs. The roles of the DSW vary by 

sector, as do the needs, location of services, and funding sources. Despite these 

differences, all sectors face the common challenge of recruiting and retaining a quality 

workforce to support the expansion of home- and community-based services. 

Title III of the DD Act of 2000 concentrated on the training component of the issue. It 

authorized $800,000 per year for three years to develop a Web-based training course 

for DSWs and $800,000 per year for six years to fund scholarships for DSWs. Congress 

failed to appropriate any additional funds for the Title. However, a congressional 

appropriation in the late 1990s earmarked seed money for the University of Minnesota 

UCEDD to develop the College of Direct Support, an online training center that provides 

training for DSW supervisors, managers, and executive directors as well as frontline 

DSWs. It continues to update its curriculum and currently sustains itself with user fees. 

It currently serves 136,000 learners in 25 states, and over the past five years has 

provided almost 2 million hours of training. 

Some states have begun to address other aspects of the recruitment and retention 

challenge. With initiatives in UCEDDs and DD Councils, as well as those funded by the 

CMS, AoA, and DOL, states have enhanced wages and benefits, developed health 

insurance options, expanded training opportunities, developed recruitment initiatives 

such as worker registries and coordination with one-stop employment centers, or 

established career ladders and credentialing. As a result, states vary in terms of their 

current needs, competencies, and infrastructure. 

This chapter discusses ADD past initiatives to address the shortage of DSWs and 

provides background information to identify an appropriate role for ADD and the DD Act 

in addressing this issue in the future. 

176 
1. Program Goals 

As Congress noted in the DD Act, “as increasing numbers of individuals with 

developmental disabilities are living, learning, working, and participating in all aspects of 

community life, there is an increasing need for a well trained workforce that is able to 

provide the services, supports, and other forms of direct assistance required to enable 

the individuals to carry out those activities” [P.L. 106-402-OCT. 30, 2000 114 STAT. 

1679 14]. 

2. History and Context 

In institutions, DSWs were primary caretakers who carried out structured programs of 

health, safety, training, and basic care. In the community, DSWs are expected to meet 

peoples’ basic health, safety, and care needs, but they also support people to develop 

and achieve personal goals; to balance risks with choices; to find and keep jobs; to 

connect with peers, friends, and family members; and to be full and active citizens in 

their communities. In institutions, DSWs could turn to supervisors and peers for daily 

support, but in the community, DSWs often work alone with little supervision (Hewitt & 

Larson, 2007). 

While given expanded responsibilities (often through regulations), DSWs have not been 

required to meet increases in qualifications, education, or training. Today, many states 

only require DSWs to have a driver’s license, a high school diploma or general 

equivalency diploma, and to pass a criminal background check. DSWs consistently 

report that their training is insufficient to prepare them for their job responsibilities 

(Hewitt & Larson, 2007). To address this need for training, the DD Act of 2000 includes 

the following initiatives: 

● Reaching Up Scholarship Program to provide grants to enable eligible 

entities to provide vouchers (of no more than $2,000 each) for postsecondary 

education to DSWs who assist individuals with DD. 

177 
● Staff Development Curriculum to fund the establishment, evaluation, and 

dissemination of a staff development curriculum and related guidelines for 

computer-assisted, competency-based, multimedia, interactive instruction 

relating to service as a DSW. 

Even in the absence of this appropriation, ADD has funded initiatives to recruit, retain, 

train, and develop best practices for DSWs through DD Councils, UCEDDs, and direct 

funding (through the PNS authority) to the College of Direct Support. Unfortunately, it is 

difficult to identify and track these initiatives on a national level because the direct 

support workforce is not an “area of emphasis.” Thus, UCEDDs and DD Councils do not 

have a vehicle in which to report the results of these initiatives in an easily identifiable 

and consistent manner. 

3. How the Program Operates 

Title III was never implemented because appropriations never materialized. 

4. Accomplishments 

Title III was never implemented because appropriations never materialized. 

5. Strengths and Weaknesses 

Title III would have provided short-term funds to enhance training opportunities. 

However, it did not address some of the broader issues that must be addressed to 

ensure that the DSW workforce is able to meet the needs of the DD community: 

● Recruitment and retention: Research and demonstrations by ADD-funded 

entities and others have identified a number of strategies to recruit and retain 

DSWs, such as providing health benefits, establishing backup systems, 

creating marketing campaigns, developing computer-based worker registries 

178 
and matching systems, and developing career lattices. However, most states 

have no mechanism to implement these strategies. 

● Wages and benefits: Wages and access to benefits are consistently 

identified as strong predictors of DSW turnover. Although inadequate data 

precludes an exact measure, researchers estimate that the average wage of 

a DSW working with people with DD is under $10 per hour, and a high 

proportion rely on public assistance to make ends meet (Hewitt et al., 2008). 

● Ongoing training and curriculum development: Because of the high 

turnover rate, there is a constant need to train new DSWs. In addition, 

existing DSWs need to learn new skills as their job demands change and they 

take on additional responsibilities as supervisors and managers. Currently, 

most of this training is funded by states and social service agencies that pay a 

fee to the College of Direct Support or the UCEDD in their state to provide 

training. In times of budget constraints, these funds may be at risk. 

● Data needs: Federal data systems do not provide sufficient information about 

DSWs working in the DD field to facilitate informed policy decision. 

● Coordination with other government agencies: A number of federal 

agencies, including CMS, AoA, the DOE National Institute on Disability 

Rehabilitation and Research, and SAMHSA, focus predominantly on the 

needs of one sector of the population, such as people with physical 

disabilities, mental health issues, or aging. As state and federal strategies are 

established, the unique needs of people with DD need to be considered. 

6. Major Issues 

Title III was never implemented because appropriations never materialized. 

7. Current Monitoring and Evaluation Activities 

None. 

179 
180 

8. Promising Practices 

Because Title III was not implemented, no promising practices have evolved from it. 

9. Recommendations 

7.1 Congress should rewrite Title III to provide grants to states to develop, 

implement, and evaluate comprehensive workforce development programs to 

attract, retain, and train DSWs who provide support to individuals with DD. 

7.2 Congress should add recruitment, retention, and training of the direct care 

workforce to the areas of emphasis in the DD Act. 

7.3 ADD should develop and help fund partnerships with other federal agencies 

to create a unified approach to ensure an adequate direct care workforce to 

serve the needs of people who are aging or have disabilities. 
Conclusion 

This report set out to answer three basic questions: 

● What has the DD Act accomplished in the past 40 years? 

● What are the strengths and weaknesses of the current structure? 

● Is the current structure suited to address the current and future social and 

policy environment? 

1. Accomplishments 

Without a doubt, the past 40 years has been a time of sustained and significant 

progress for people with DD. The quality of their lives and their control over their lives 

has seen monumental progress. The DD Act has contributed to this progress, but the 

extent of its contribution is unclear. Limitations in data, monitoring, and evaluation 

hamper our ability to come to any firm conclusions. Moreover, the results of the DD Act 

vary across the states. The nature, extent, and implementation of activities all differ from 

state to state. Assessing and adding up the components of programs under the DD Act 

is simply not possible. 

But while a fine-tuned assessment of the legislation is beyond our capabilities, enough 

evidence exists to suggest that the DD Act has been a positive force. Together with 

private and public sector stakeholders, the Act has changed lives for the better, through 

various programs and the leaders they have fostered. Instead of being institutionalized, 

marginalized, and forgotten, people with DD have made huge steps in taking their 

rightful place in society—in schools, workplaces, and the public square, and even within 

their own families. And while significant progress still needs to be made, that progress 

seems more inevitable, due to a large extent to the burgeoning and sophisticated selfadvocacy movement that has been nurtured in no small measure by the DD Act. 

181 
182 

2. Strengths and Weaknesses 

The DD Act has many strengths, but at times those strengths are dampened by 

institutional arrangements. For example, Councils have been the source of much 

important innovation in service delivery models, but their lack of direct authority and lack 

of a statutory relationship to state agencies limit their influence. P&A programs provide 

essential legal representation and were integral to both deinstitutionalization and 

enforcement of IDEA, but lack of resources undermines their effectiveness. The 

UCEDDs generate and disseminate important information and help create the next 

generation of leaders, but their funding mechanism can at times prevent them from 

responding directly to community needs. The PNS have produced very important 

sources of data, but funding limitations prevent them from being the source of 

innovative ideas envisioned in the original DD Act. One clear shortcoming is the lack of 

funding for Titles II and III, Family Support and Direct Support Workforce, two initiatives 

that have great potential for helping people with disabilities and their families. 

3. Structure 

The DD Act has a clear vision for the development of services for people with 

disabilities, and ADD is supposed to spearhead that vision. However, ADD is 

structurally disjointed from the other federal agencies that fund services for people with 

DD. This hampers ADD’s ability to direct funds and influence the development of 

services. Instead, other agencies that are not tied to that vision, such as CMS, are 

making critical policy through funding and regulatory mechanisms. 

The recommendations set forth in this report aim to address these issues and offer a 

way forward when the reauthorization process begins. 
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National Association of Councils on Developmental Disabilities (2008). Annual Report 

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National Disability Rights Network. (2009). Comparison Charts of DOJ CRIPA 

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APPENDIX A. Interviews 

Interviews with Individuals and Organizational Representatives 

John Agosta, Vice President, Human Services Research Institute 

Karen Armstrong, Protection and Advocacy for Individuals with Mental Illness 

Program Coordinator, State Planning and Systems Development Branch, 

Division of State and Community Systems Development, Center for Mental 

Health Services, Substance Abuse and Mental Health Services Administration 

Robert Bacon, Director, Center for Disabilities and Development, University of Iowa 

Ruthie-Marie Beckwith, Executive Director, Tennessee Microboards Association, 

Inc. 

Stephen Bennett, President and CEO, United Cerebral Palsy 

Peter Berns, Executive Director, The Arc of the United States Veteran Affairs 

Peter Blanck, University Professor and Chairman of the Burton Blatt Institute: 

Centers of Innovation on Disability, Syracuse University 

David Braddock, Executive Director, University of Colorado, Coleman Institute for 

Cognitive Disabilities 

John Butterworth, Project Director, Institute for Community Inclusion, University of 

Massachusetts Boston 

Grace Chang, Sibling, Maryland 

Henry Claypool, Director, Office of Disabilities, Health and Human Services 

Doreen Croser, Executive Director, American Association on Intellectual & 

Developmental Disabilities 

Steven Eidelman, Robert Edelsohn Chair in Disabilities Studies, University of 

Delaware 

Suellen Galbraith, Director for Government Relations, ANCOR 

Bob Gettings, Executive Director, Retired, National Association of State Directors of 

Developmental Disability Services 

Erika Hagensen, Director of Disability Rights, Family and Technology Policy, 

Partnership of the Arc and United Cerebral Palsy 

Tamar Heller, Director of the Rehabilitation Research and Training Center on Aging 

with Developmental Disabilities, Department of Disability and Human 

Development, University of Illinois-Chicago 

Amy Hewitt, Senior Research Associate/Training Director, Research and Training 

Center on Community Living, Institute on Community Integration, University of 

Minnesota 

Tammie Hoop, Director of Government Relations and Advocacy, Voices of the 

Retarded 

Peter Kinzler, Chair, Legislative Committee, Voices of the Retarded 

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Sherri Larson, Senior Research Associate, Research and Training Center on 

Community Living, Institute on Community Integration, University of Minnesota 

Stephanie Lee, Senior Policy Advisor, National Down Syndrome Society National 

Policy Center 

Joe Meadours, President, People First of California 

James McGaughey, Executive Director, Protection and Advocacy for Persons with 

Disabilities, Connecticut 

John M. Morrow, Chief, State Planning and Systems Development Branch, Division 

of State and Community Systems Development, Center for Mental Health 

Services, Substance Abuse and Mental Health Services Administration 

Ari Ne’eman, President, Autistic Self Advocacy Network 

Margaret Nygren, Associate Executive Director for Program Development, 

Association of University Centers on Disabilities 

Susan Parish, Assistant Professor, School of Social Work, University of North 

Carolina 

Ed Preneta, Director, Connecticut Council on Developmental Disabilities 

Joe Razes, Acting Division Director, Center for Medicare and Medicaid Services, 

U.S. Department of Health and Human Services, Center for Medicaid and 

State Operations, Disabled and Elderly Health Programs Group, Division of 

Advocacy and Special Initiatives 

Suzanne Ripley, Director, Family Support Center on Disabilities: Knowledge and 

Involvement Network, Academy of Education Development 

Nicholas Rose, Program Planner, New York State DD Planning Council 

Debbie Robinson, President, Self-Advocates Becoming Empowered 

Ricki Sabia, Associate Director for the National Down Syndrome Society Policy 

Center 

Jeff Sell, Vice President, Advocacy & Public Policy, Autism Society of America 

Ilene Shane, Executive Director, Disability Rights Network of Pennsylvania 

Nancy Thaler, Executive Director, National Association of State Directors of 

Developmental Disability Services 

Rud Turnbull, Co-Founder, Co-Director, Distinguished Professor, Beach Center on 

Disability, University of Kansas 

James Ziruolo, Vocational and Rehabilitation and Employment Division Chief, U.S. 

Department of Veterans Affairs 

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Grantee Focus Group Participants: 

Executive Directors of State and Territorial Councils, Convened by the National 

Association of Councils on Developmental Disabilities (NACDD) 

Mary Sword, Idaho State Council on DD 

Alan Kerzin, California State Council on DD 

Holly Riddle, North Carolina Council on DD 

Roger Webb, Texas Council for DD 

Becky Harker, Governor’s DD Council (IA) 

Mary Gordon, Nebraska Planning Council on DD 

Ed Preneta, Connecticut Council on DD 

Jane Rhys, Kansas Council on DD 

Jennifer Ondrejka, Wisconsin Board for People with Developmental Disabilities 

Wanda Willis, Tennessee Council on DD 

Susan Pritchard-Green, Missouri, Planning Council for DD 

Bill Lynch, Oregon Council on DD 

Suellen Jackson-Boner, Governor’s Council for People with DD (IN) 

Executive Directors of Protection and Advocacy Organizations convened by the 

National Disability Rights Network (NDRN) 

Charles Hausch, West Virginia Advocates, Inc. 

Curt Decker, National Disability Rights Network 

Elmer Cerano, Michigan Protection and Advocacy Services, Inc. 

Ilene Shane, Disability Rights Network (PA) 

Marsha Hockensmith, Kentucky Protection and Advocacy 

Richard Cohen, Disability Rights Center (NH) 

Sylvia Piper, Iowa Protection and Advocacy 

Zena Naiditch, Equip for Equality (IL) 

Virginia Knowles, Maryland Disability Law Center 

Center Directors of University Centers for Excellence in Developmental 

Disabilities convened by the Association of University Centers on Disabilities 

(AUCD) 

Ansley Bacon, Director, Westchester Institute for Human Development, New York 

Robert Bacon, Director, Center for Disabilities and Development, University of Iowa 

Leslie Cohen, Director, Sonoran UCEDD, University of Arizona 

Michael Gamel-McCormick, Associate Director, Center for Disability Studies, 

University of Delaware 

Bill Kiernan, Director, Institute for Community Inclusion, University of Massachusetts 

Boston 

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Barbara LeRoy, Director, Developmental Disabilities Institute, Wayne State University, 

Michigan 

Jan Nisbet, Director, Institute on Disability, University of New Hampshire 

Interviews with the Staff of the Administration on Developmental 

Disabilities 

Pat Morrissey, former Commissioner 

Faith McCormick, Acting Commissioner 

Elsbeth Wyatt, Program Specialist 

Jennifer Johnson, Program Specialist 

Ophelia McClain, Program Analyst 

Lisa Kennedy Osaka, Program Specialist 

Sara Newell, Program Specialist 

Jackie Ezell, Program Specialist 

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APPENDIX B. Mission of the National Council on 

Disability 

Overview and Purpose 

The National Council on Disability (NCD) is an independent federal agency, composed 

of 15 members appointed by the President, by and with the consent of the U.S. Senate. 

The purpose of the NCD is to promote policies, programs, practices, and procedures 

that guarantee equal opportunity for all individuals with disabilities, and that empower 

individuals with disabilities to achieve economic self-sufficiency, independent living, and 

inclusion and integration into all aspects of society. 

To carry out this mandate, we gather public and stakeholder input, including that 

received at our public meetings held around the country; review and evaluate federal 

programs and legislation; and provide the President, Congress and federal agencies 

with advice and recommendations. 

Specific Duties 

The current statutory mandate of NCD includes the following: 

● Reviewing and evaluating, on a continuing basis, policies, programs, 

practices, and procedures concerning individuals with disabilities conducted 

or assisted by federal departments and agencies, including programs 

established or assisted under the Rehabilitation Act of 1973, as amended, or 

under the Developmental Disabilities Assistance and Bill of Rights Act, as well 

as all statutes and regulations pertaining to federal programs that assist such 

individuals with disabilities, to assess the effectiveness of such policies, 

programs, practices, procedures, statutes, and regulations in meeting 

the needs of individuals with disabilities. 

● Reviewing and evaluating, on a continuing basis, new and emerging disability 

policy issues affecting individuals with disabilities in the Federal Government, 

at the state and local government levels, and in the private sector, including 

the need for and coordination of adult services, access to personal assistance 

services, school reform efforts and the impact of such efforts on individuals 

with disabilities, access to health care, and policies that act as disincentives 

for individuals to seek and retain employment. 

● Making recommendations to the President, Congress, the Secretary of 

Education, the director of the National Institute on Disability and Rehabilitation 

Research, and other officials of federal agencies about ways to better 

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promote equal opportunity, economic self-sufficiency, independent living, and 

inclusion and integration into all aspects of society for Americans with 

disabilities. 

● Providing Congress, on a continuing basis, with advice, recommendations, 

legislative proposals, and any additional information that NCD or Congress 

deems appropriate. 

● Gathering information about the implementation, effectiveness, and impact of 

the Americans with Disabilities Act of 1990 (ADA) (42 U.S.C. § 12101 et 

seq.). 

● Advising the President, Congress, the commissioner of the Rehabilitation 

Services Administration, the assistant secretary for Special Education and 

Rehabilitative Services within the DOE, and the director of the National 

Institute on Disability and Rehabilitation Research on the development of the 

programs to be carried out under the Rehabilitation Act of 1973, as amended. 

● Providing advice to the commissioner of the Rehabilitation Services 

Administration with respect to the policies and conduct of the administration. 

● Making recommendations to the director of the National Institute on Disability 

and Rehabilitation Research on ways to improve research, service, 

administration, and the collection, dissemination, and implementation of 

research findings affecting people with disabilities. 

● Providing advice regarding priorities for the activities of the Interagency 

Disability Coordinating Council and reviewing the recommendations of this 

council for legislative and administrative changes to ensure that such 

recommendations are consistent with NCD’s purpose of promoting the full 

integration, independence, and productivity of individuals with disabilities. 

● Preparing and submitting to the President and Congress an annual report 

titled National Disability Policy: A Progress Report.

Statutory History 

NCD was established in 1978 as an advisory board within the DOE (P.L. 95-602). The 

Rehabilitation Act Amendments of 1984 (P.L. 98-221) transformed NCD into an 

independent agency. 
Endnotes 

1. Disability Law Center of Alaska v. Anchorage School District, No. 3:07-cv-0131(D. 

Alaska, Sept. 26, 2007). 

2. Amicus Brief filed by the United States at the invitation of the Second Circuit in 

Connecticut Office of Protection and Advocacy v. Hartford Bd. of Ed., 464 F.3d 229 (2nd 

Cir. 2006). 

3. Connecticut Office of Protection and Advocacy v. Hartford Bd. of Ed., 355 F. Supp. 

2d 649 (D. Conn. 2005), aff’d, 464 F.3d 229 (2nd Cir. 2006). 

4. Missouri Protection and Advocacy Services, Inc., et al. v. Carnahan, et al. 499 F.3d 

803 (8th Cir. Aug. 23 2007). 

5. Arc Dallas v. Dallas County Mental Health & Mental Retardation Center Board of 

Trustees, 19 F.3d 241 (5th Cir. 2000). 

6. Virginia Protection and Advocacy v. Reinhard, 568 F.3d 110 (4th Cir. 2009), 

rehearing and rehearing en banc denied, July 30, 2009); Indiana Protection and 

Advocacy Services v. Reinhard,__F.3d ___, 2009 WL 2224807 (7th. Cir., July 28, 

2009). 

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