Exploring New Paradigms for

the Developmental Disabilities

Assistance and Bill of Rights Act

Supplement to the 2011 NCD publication

Rising Expectations: The Developmental 

Disabilities Act Revisited

National Council on Disability

2012 Supplement to 2011 Report
National Council on Disability

1331 F Street, NW, Suite 850

Washington, DC 20004

Exploring New Paradigms for the Developmental Disabilities Assistance and Bill 

of Rights Act: Supplement to the 2011 NCD publication Rising Expectations: The 

Developmental Disabilities Act Revisited

This report is also available in alternative formats and on the National Council on 

Disability (NCD) Web site (www.ncd.gov).

2012 Supplement to 2011 Report

202-272-2004 Voice

202-272-2074 TTY

202-272-2022 Fax

The views contained in this report do not necessarily represent those of the 

Administration, as this and all NCD documents are not subject to the A-19 Executive 

Branch review process.
1 

National Council on Disability Members and Staff

Members

Jonathan M. Young, Ph.D., Chairman 

Janice Lehrer-Stein, Vice Chair

Gary Blumenthal

Chester A. Finn

Sara Gelser

Marylyn Howe 

Matan Aryeh Koch

Lonnie Moore 

Ari Ne’eman

Dongwoo Joseph (“Joe”) Pak, MBA

Clyde E. Terry

Fernando M. Torres-Gil, Ph.D.

Linda Wetters

Pamela Young-Holmes 

Staff 

Aaron Bishop, Executive Director 

Stacey S. Brown, Staff Assistant

Julie Carroll, Senior Attorney Advisor

Lawrence Carter-Long, Public Affairs Specialist

Joan M. Durocher, General Counsel & Director of Policy

Lisa Grubb, Confidential Special Assistant / Coordinator of Administration

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

Carla Nelson, Administrative Specialist

Robyn Powell, Attorney Advisor

Mark Seifarth, Legislative Affairs Specialist

Anne Sommers, Director of Legislative Affairs & Outreach
2 

Acknowledgments

NCD wishes to express its gratitude to Serena Lowe of AnereS Strategies, LLC, for 

researching and drafting this paper. NCD also expresses its gratitude to the following 

technical experts and federal agency officials who contributed to the content of this 

document, either through participation in individual interviews, engagement in focus 

group discussions, or the contribution of data and publications that significantly informed 

the content of this paper:

Santi Bhagat

Cheryl Bates-Harris

Allan Bergman

Jane Boone

Eric Buehlman

John Butterworth

Chris Button

Michael Callahan

Rob Cimera

Ellen Condon

Abby Cooper

John Dickerson

Steve Eidelman

Effie George

Susan Goodman

Nancy Guerney

Johnette Hartnett

David Hoff

Don Hoyle

Andrew Imparato

George Jesien

Melodie Johnson 

Jennifer Kemp

Rie Kennedy

Bob Lawhead

Rich Lueking

Bryon MacDonald

Scot Malvaney

David Mank

Yolanda Mazyck

Bryon MacDonald

Mat McCollough

Lisa Mills

Nancy Molfenter

Michael Morris

Kim Musheno

Karen McCullogh

Laura Owens

Julie Petty

Curtis Richards

Linda Rolfe

Jeff Sell

Annette Shea

Cindy Smith

Barb Trader

Brad Turner

Nancy Ward

Madeleine Will

Betty Williams
3 

Federal Agencies 

● Administration on Developmental Disabilities, Department of Health and Human 

Services

● Centers for Medicare and Medicaid Services, Department of Health and Human 

Services

● Office of Special Education and Rehabilitative Services, Department of Education

● Office of Disability Employment Policy, Department of Labor

● Social Security Administration
4 
5 

Contents

National Council on Disability Members and Staff ........................................................... 1

Introduction ................................................................................................................................. 9

Overview of Rising Expectations: The DD Act Revisited............................ 9

Purpose.............................................................................................................11

Methodology.....................................................................................................12

SECTION 1. Reforming the Federal and State ID/DD Infrastructure .......................15

1.1. Increasing ADD’s Authority and Prominence.....................................16

1.1.1. Reassessing ADD’s Position in the Administration for 

Children and Families ..............................................................16

1.1.2. Increasing ADD’s Authority .....................................................18

1.1.3. Restructuring the Federal Government Response to 

Disability: Implications for ADD ..............................................19

1.1.4. Ensuring Flexibility for ADD to Collaborate Across 

Federal Systems .......................................................................22

1.1.5. Promoting Effective ADD Leadership ....................................22

1.2. Strengthening the DD Network Through Expansion and 

Coordination............................................................................................23

1.2.1. Requiring Coordinated Planning Among DD Network 

Partners ......................................................................................24

1.2.2. Pursuing Uniform Data Collection, Consistent 

Performance Measurement, and Shared Accountability....25

1.2.3. Empowering and Guiding State ID/DD Authorities..............27

1.2.4. Establishing a Funding Stream for Self-Advocacy ..............28

1.2.5. Improving Sustainability Through Collective 

Responsibility ............................................................................28

1.3. NCD Recommendations to Improve the ID/DD Infrastructure ........29

SECTION 2. Cross-System Focus to Improve Outcomes Across the 

Lifespan for People with ID/DD ................................................................. 31

2.1. Recommendations to Improve Early Intervention and 

Education Opportunities ........................................................................32

2.1.1. Stronger Cross-Agency Collaboration...................................32

Recommendations ....................................................................34

2.1.2. Improved Educational Outcomes ...........................................35

Recommendations ....................................................................36
6 

2.2. Ensuring High Expectations and Opportunities for People with 

ID/DD As They Transition from Youth to Adulthood .........................39

2.2.1. Postsecondary Education As a Tool for Effective 

Transition....................................................................................41

2.2.2. System Change: Transitioning Toward Excellence in 

Achievement and Mobility........................................................43

2.2.3. System Change Through Reauthorization of the 

Workforce Investment Act .......................................................45

Recommendations .................................................................................47

2.3. Recommendations to Improve Employment Outcomes....................48

2.3.1. Employment First: Integrated Employment As the 

Desired Outcome......................................................................50

 Recommendation ............................................................56

2.3.2. Reconceptualizing Supported Employment Services .........56

Recommendations ....................................................................57

2.3.3. Promoting Employment in the Context of Medicaid 

Reform ........................................................................................59

 Recommendations .............................................................59

2.4. Ongoing Supports Over the Lifespan...................................................66

2.4.1. Defining “Community” to Promote Inclusion and Full 

Participation...............................................................................71

2.4.2. Realigning Public Resources to Prioritize Home and 

Community Based Services ....................................................74

2.4.3. Transformational Change in the Context of Medicaid 

Reform ........................................................................................74

Recommendations .................................................................................76

SECTION 3. Conclusion: Transformation in the Midst of Fiscal Crisis .................79

Bibliography..............................................................................................................................81

Endnotes....................................................................................................................................85
7 

Tables

Table 1. Examples of State-based Approaches to Implementing Employment First 

(analysis of the State Employment Leadership Network, 2009).......................54

Table 2. Opportunities to Promote and Support Employment in MFP Through 

Policies and Services...............................................................................................64

Table 3. Value Framework and Guiding Principles for the Provision of LTSS .............68

Table 4. Comparison of Costs of Institutional Versus Community-Based 

Residential Services for Working-Age Medicaid Beneficiaries with 

Significant Disabilities..............................................................................................75

Figures

Figure 1. ACF Organizational Structure, 2011 .....................................................................17

Figure 2. Possible Organizational Structure of an Independent Living 

Administration ...........................................................................................................20

Figure 3. Across-the-Lifespan Policy Framework ................................................................31

Figure 4. Percentage of People with ID/DD Participating in Integrated Employment 

Services by State, 2009 .......................................................................................... 53 

Figure 5. Model: Comprehensive Supports Over the Lifespan..........................................67
8 
9 

Introduction

The Developmental Disabilities Assistance and Bill of Rights Act (DD Act, P.L. 106-

402), signed into law in 1963 and reauthorized most recently in 2000, is the nation’s 

policy and civil rights framework for more than 4.7 million Americans with intellectual

and developmental disabilities (ID/DD). When the law was passed in 1963, Congress 

established a set of principles and programs focused on improving the lives of people 

with ID/DD; protecting their civil and human rights; and promoting their maximum 

potential through increased independence, productivity, and integration into the 

community. Today, these goals must be revitalized and translated into a coordinated 

federal strategy focused on supporting citizens with ID/DD in achieving optimal selfsufficiency, economic advancement, and full participation in the community.

Overview of Rising Expectations: The DD Act Revisited

In 2011, NCD released a report entitled Rising Expectations: The Developmental 

Disabilities Act Revisited1

 (hereinafter Rising Expectations), which summarized the 

accomplishments and challenges of the DD system since the passage of the DD Act in 

1963. In its synopsis, the report described the development of the DD system, which 

has evolved from a purely medical model to a multifaceted social model involving an 

interdisciplinary approach to identifying needs and delivering supports and services in 

the community. Despite some gains in disability rights, people with ID/DD continue to 

face considerable barriers to full integration, maximum independence, and selfdetermination. Major programs funded by the Federal Government that affect the lives 

of people with ID/DD have been in place 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, no 

federal policymaking or funding stream is focused on building effective communitybased alternatives to Medicaid-funded supports for people with ID/DD. Although the 
10

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 Services (CMS). Thus, policy related to citizens with 

ID/DD lacks coordination across federal departments and agencies.

Rising Expectations addressed 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 existing structure suited to address the current and future social and policy 

environment?

This supplement builds on the original NCD report to explore opportunities for 

expanding the infrastructure to fully realize the underlying goals of the DD Act and to 

establish a comprehensive policy framework of clear, consistent objectives across 

federal agencies and within other major legislative statutes.

As Rising Expectations described, the nation’s expectations, attitudes, policies, and 

services for people with disabilities have changed dramatically since the DD Act was 

passed in 1963, and they continue to evolve. Today, our society generally has greater 

faith in the competencies of citizens with ID/DD, and these citizens and their families 

have higher expectations about the types of lives they will lead. Graduating from high 

school, obtaining integrated employment at livable wages, developing meaningful social 

relationships and natural supports, and living independently in the community are 

common goals of citizens with ID/DD. Public policy and publicly financed supports must 

be realigned to more closely mirror the desires and expectations of citizens with ID/DD 

to contribute and participate fully in society.
11 

Unfortunately, the majority of publicly financed support systems have not kept pace with 

evidence-based practices or the evolving, enhanced expectations of citizens with ID/DD and 

their families. Citizens with ID/DD continue to face barriers to accessing health care, housing, 

employment, and community supports focused on ensuring their full participation in society. 

Significant public policy issues remain, including inadequate supports for the transition from 

youth to adulthood, a disconnect between employment and income/asset limits, and a lack of 

coordination among key systems driving outcomes for citizens with ID/DD.

Purpose 

The Developmental Disabilities Assistance and Bill of Rights Act was established under 

the premise that “Individuals with developmental disabilities, including those with the 

most severe developmental disabilities, are capable of achieving independence, 

productivity, integration, and inclusion into the community, and often require the 

provision of services, supports, and other assistance to achieve such.”

2 The legislation 

was crafted to establish an infrastructure that would improve access and 

responsiveness to the needs of people with developmental disabilities and their families, 

and to ensure that federal policy and programs presumed the highest level of 

expectations, competency, inclusion, and engagement of citizens with ID/DD.

This supplement expands on the challenges identified in Rising Expectations by offering 

specific recommendations for aligning systems and landmark statutes both within and 

outside the scope of the DD Act. The supplement examines specific regulatory and 

legislative strategies that could be deployed to ensure a solid, unified federal policy 

aimed at fully realizing the intent of the DD Act: to give people with ID/DD the 

information, skills, opportunities, and support to— 

● make informed choices and decisions about their lives;

● live in homes and communities in which they can exercise their full rights and 

responsibilities as citizens;
12

● pursue meaningful and productive lives;

● contribute to their families, their communities, their states, and the nation;

● have interdependent friendships and relationships with others;

● live free of abuse, neglect, financial or sexual exploitation, and violations of their 

legal and human rights; and

● achieve full integration and inclusion in society as individuals, consistent with 

their unique strengths, resources, priorities, concerns, abilities, and capabilities.

This report is organized into three parts. Section 1 lays out a framework for addressing 

the structural challenges of achieving strong cross-system coordination of policies, 

programs, and services within the existing state and federal ID/DD infrastructure. 

Section 2 explores policy options to coordinate various federal systems vital to the 

provision of programs, supports, and services aimed at improving outcomes for people

with ID/DD across the lifespan, aligned with the underlying principles of the DD Act.

Section 3 is the conclusion.

Methodology

The recommendations outlined in this supplement are based on findings from the 

following research and intelligence-gathering activities:

● a comprehensive literature review analyzing trends, developments, challenges, 

and achievements of the DD Act since its last reauthorization in 2000;

● 25 interviews with individual stakeholders—self-advocates, family advocates, 

researchers, practitioners, and state and federal government officials; and
13

● five independent focus groups composed of 6–10 participants representing 

15 states. 

The supplement also provides an overview of relevant legislative proposals before the 

112th Congress and an analysis of several existing and new federal program initiatives 

linked to the emergence of the DD Act and its fundamental goals. 
14
15

SECTION 1. Reforming the Federal and State 

ID/DD Infrastructure

Despite significant gains, people with DD continue to face considerable 

barriers to full integration, maximum independence, and selfdetermination. 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

(NCD, 2011, p. 24).

NCD’s Rising Expectations identified several challenges related to ADD’s ability to 

implement the principles of the DD Act effectively under its existing structural 

constraints. First, there is a significant disconnect between outcomes desired from the 

DD Act and ADD’s ability to direct services, influence program design, and guide policy 

development across federal systems. Second, given ADD’s place in the organizational 

structure of the Department of Health and Human Services (HHS), it is limited to playing 

a minimal role through interagency coordinating functions. As noted in Rising 

Expectations, “Outreach to other departments is tenuous at best, with the burden being 

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

leadership of the agencies” (NCD, 2011, p. 25).

Reauthorization of the DD Act is essential to modernize the system. In addition, ADD 

needs a thoughtful reorganization and expansion of its authority to ensure a solid 

connection among the DD networks and state authorities on ID/DD services, as well as 

expansion of its leadership role to effectuate the alignment of federal policies, programs, 

and resources. As reported in Rising Expectations, “Given current policy and program 

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

needs” (NCD, 2011, p. 24).
16

1.1. Increasing ADD’s Authority and Prominence 

Developing a coherent federal policy requires the leadership of a federal 

entity with the authority and influence to bring federal partners to the table. 

No such entity currently exists for ID/DD policy. The DD Act legislation 

established an important set of goals and rights for people with DD that 

could form the theoretical basis of a strong federal policy, but ADD lacks 

the authority and influence to broaden the reach of these goals beyond the 

DD Act programs themselves (NCD, 2011, p. 33).

As indicated in Rising Expectations, the federal infrastructure necessary to support the 

growing expectations of people with ID/DD is severely limited in scope, authority, and 

resources. One of the most significant impediments to fully realizing the objectives of 

the DD Act is a lack of a strong federal agency with the statutory and administrative 

authority to effectively lead and coordinate the Federal Government’s role in addressing 

the needs of people with ID/DD. 

1.1.1. Reassessing ADD’s Position in the Administration for Children 

and Families

ADD has been part of the Administration for Children and Families (ACF), an Operating 

Division within HHS, since the 1980s. The current organizational structure greatly 

impedes the ability of ADD’s leaders to efficiently engage in high-level internal decision

making within the HHS/ACF hierarchy. ADD also has little formal authority to engage 

other federal partners vital to the effective dissemination of policies, delivery of 

programs, and collective commitment to improved outcomes for people with ID/DD.

Administrative constraints prevent ADD’s leadership from exercising any authority over 

its budget—all resources are controlled and disseminated by ACF. Prioritization for 

resources among all the programs housed under the ACF umbrella is highly competitive 

and overly complex. ADD’s leaders must divert energy from their central role of 
17

overseeing programs authorized under the DD Act toward securing resources, decisionmaking authority, and relevance in an environment in which ADD is just one of a

multitude of priorities.

Under this system, ADD has suffered in recent years from budget decreases and 

human resource constraints, while the objectives and expectations of stakeholders in

the ID/DD community have continued to evolve. Providing ADD with its own federal 

administrative authority—including a budget and resources that reflect the percentage 

of the population the agency represents and the portfolio for which it is responsible—are 

the first steps in system transformation. Figure 1 shows the ACF organizational 

structure in 2011; ADD was previously one of 10 key program offices that report to and 

are managed by ACF. The other nine offices are the Office of Family Assistance (OFA); 

Figure 1. ACF Organizational Structure, 2011

Source: Administration on Children & Families, U.S. Department of Health and 

Human Services, 2011. http://www.acf.hhs.gov/orgs/opschart.html
18

Administration on Children, Youth and Families; Office of Child Support Enforcement; 

Office of Refugee Resettlement; Administration for Native Americans; Office of 

Community Services; Office of Head Start; Office of Public Affairs; and Office of Child 

Care. ACH has regional offices in Boston; New York; Philadelphia; Atlanta; Chicago; 

Dallas; Kansas City, MO; Denver; San Francisco; and Seattle. However, these regional 

offices did not support ADD programs.

1.1.2. Increasing ADD’s Authority

Elevating ADD at the federal level so that it has both the statutory and administrative 

authority necessary to fully realize the aims of the DD Act would allow the establishment 

of the following:

● Unified national goals to focus the attention of leaders, service providers, 

researchers, and practitioners on the critical issues facing people with ID/DD and 

their families. 

● The development of a clear, coordinated national research agenda on ID/DD. 

● Authority for ADD to work across federal agencies to ensure that all domains of 

public life possess the focus and competencies to include people with ID/DD 

through inclusion and integration. 

● Authority and resources for ADD to centralize evaluation of various federal and 

state public services to determine which public investments are most effective in

achieving desired outcomes for people with developmental disabilities. 

● Guidance and support to state ID/DD authorities to assist in the development of 

effective service systems through dissemination of policy guidance, provision of 

training and technical assistance to state systems, and investments in 

transformative system-change demonstrations. 
19

● The ability to effectively collaborate with various federal agencies to develop joint 

guidance, coordinate data collection efforts, develop consistent objectives and 

common performance measures, and implement stringent evaluation methods. 

Reauthorization of the DD Act creates an opportunity to significantly elevate and expand 

ADD’s authority, to empower the agency to deliver on the ambitious agenda set forth in

the DD Act.

1.1.3. Restructuring the Federal Government Response to Disability: 

Implications for ADD

Numerous proposals have been developed in recent years to improve the coordination 

of federal programs and agencies focused on disability policy. One proposal calls for the 

creation of an entity that would consolidate several existing federal programs into an 

entity that has statutory and administrative authority to coordinate policy goals, program 

objectives, data collection requirements, and performance measures. 

Figure 2 outlines a model for such an entity that includes the following four core 

divisions:

● Administration on Community Living, which would be responsible for state 

independent living grants and other national initiatives, managed by HHS, and 

focused on supporting people to live in the community, such as the Money 

Follows the Person demonstration program. 

● Administration on Economic Empowerment, which would be responsible for 

workforce incentives and financial capability programs. 

● Administration on Assistive and Universal Design Technology, which would 

include state assistive technology projects, alternative financing initiatives, and 

rehabilitation engineering research centers currently operated by the National 

Institute for Disability and Rehabilitation Research. 
20

Figure 2. Possible Organizational Structure of 

an Independent Living Administration1

Source: Prepared by Michael Morris of the National Disability Institute for both the 

National Council on Independent Living and the Collaboration to Promote SelfDetermination (2010).

● ADD, whose portfolio would be expanded to include a focus on transition issues 

across the lifespan, the promotion of Employment First strategies, and expanded 

protection and advocacy services. 

Conceptually these four divisions would report directly to an assistant secretary-level 

position. 

One important issue is where such an entity would be located within the Federal 

Government. The Senate draft reauthorization of the Workforce Investment Act (WIA), 

introduced in June 2011, authorizes an Independent Living Administration (ILA) under 

the Office of Special Education and Rehabilitative Services in the Department of 

Education. Under this proposal, the ILA is tied to the vocational rehabilitation system; 

therefore, it could not be used to transition federal entities such as ADD to the ILA. 
21

Other proposals have suggested housing such an entity within HHS. Coincidentally, 

HHS recently announced a reorganization of its internal structure that brings together 

several program offices that provide supports to the aging and disability communities 

under a newly-created operating division called the Administration on Community Living 

(ACL). ACL would be led by an Assistant Secretary, who will report directly to the 

Secretary of HHS. ACL will include the Administration on Aging, Office on Disability 

Policy, and ADD as well as policy, research and evaluation components. Proponents of 

this reorganization believe that ACL will significantly elevate ADD’s role within HHS and 

address some of the bureaucratic challenges the office has experienced while under the 

auspices of ACF.

Regardless of its location, strong bipartisan support exists for the creation of a 

centralized entity that can bring various federal programs and agencies together under 

one umbrella. Certainly, the newly created ACL repositions and elevates ADD to a new 

playing field and ensures that ADD is on equal footing with the AOA at the federal level. 

ACL would also ensure a greater balance in authority within HHS between these 

program offices and the Centers for Medicare and Medicaid Services (CMS), which 

provides the primary funding and reimbursement of both medical and nonmedical longterm supports and services to both the elderly and individuals with disabilities.

While the creation of the ACL is a tremendous step forward in elevating the role of the 

ADD, a gap will remain in coordination among services specific to the ID/DD population 

that are housed outside of HHS and the ACL. An additional step worthy of 

administrative dialogue is to determine whether other program offices and activities of 

the federal government should eventually be shifted into the ACL. Certainly, the model 

in Figure 2 provides a more comprehensive consolidation of numerous federal 

programs and initiatives that could serve as a framework for future expansion of ACL as 

it is evolves over time.
22

1.1.4. Ensuring Flexibility for ADD to Collaborate Across Federal 

Systems 

To optimize its effectiveness in the future, ADD must have the authority, flexibility, and 

resources to enter into meaningful cooperative agreements and solid partnerships with 

the federal agencies that govern programs essential to the progress of citizens with 

ID/DD. This includes collaborating with other entities in HHS, as well as working with the 

Departments of Education, Housing and Urban Development (HUD), Labor, 

Transportation, and Treasury, and the Social Security Administration (SSA). While ADD 

currently lacks sufficient authority or funding to engage in large collaborative efforts, it 

does have the ability to reach out in formal, proactive ways to these agencies as an 

advocate to ensure that the needs of people with ID/DD are incorporated into policies 

and programs. Currently, ADD has been rather limited in its ability to persuade other 

agencies to prioritize citizens with ID/DD, but a general consensus exists among 

stakeholders that ADD’s central role should be to function as a “bully pulpit” and ardent 

advocate across federal agencies on behalf of people with ID/DD.

1.1.5. Promoting Effective ADD Leadership

Despite the constraints related to ADD’s lack of authority, flexibility, and resources, ADD 

leaders have made significant efforts over the past two years to increase the Federal 

Government’s response to citizens with ID/DD by focusing heavily on public outreach 

and strategic planning. In 2010, ADD hosted five regional two-day interactive forums 

entitled Envisioning the Future that engaged key ID/DD stakeholders — including selfadvocates, family advocates, practitioners, researchers, state and federal officials, and 

representatives from various DD network components — to learn more about what the 

field would like to see ADD prioritize as part of its five-year strategic plan. The forums

culminated with a national stakeholders meeting in Washington, D.C., followed by a 

public comment process through which the agency received more than 4,000 comments 

from stakeholders across the country. 
23

Throughout the regional sessions and at the national stakeholders meeting, participants 

emphasized that ADD should focus on enhancing its central role as the “national 

watchdog” for the interests of citizens with ID/DD across federal policies, programs, and 

agencies, and should advocate for the full inclusion and economic advancement of 

people with ID/DD. 

The Envisioning the Future forums are an example of ADD’s attempts to increase 

national awareness of the principles of the DD Act and the importance of empowering

citizens with ID/DD and their families in federal public policy. ADD’s five-year strategic 

plan has not yet been released, but the agency’s commitment in recent months to 

establishing a vision is noteworthy; it offers a tremendous opportunity to reflect on and 

strengthen the agency’s stature as the leading federal voice advocating for the rights of 

citizens with ID/DD.

1.2. Strengthening the DD Network Through Expansion and 

Coordination

In addition to ADD, the DD Act authorizes four other main programs: 

● State Councils on Developmental Disabilities (subtitle B);

● Protection and Advocacy Systems (subtitle C);

● University Centers of Excellence in Developmental Disabilities (subtitle D); and

● Projects of National Significance (subtitle E).

The first three programs comprise the backbone of the DD network in the United States. 

While this network has contributed immensely to the implementation of the Act, several 

statutory gaps have prevented the network and ADD from reaching their collective 

potential. Three key strategies for improving the collaborative effectiveness of ADD and 

the DD network are (1) the development of a coordinated planning process; (2) the 
24

establishment of a consistent data collection and performance measurement system; 

and (3) the inclusion of the state ID/DD authorities and self-advocacy organizations as 

formal components of the network.

1.2.1. Requiring Coordinated Planning Among DD Network Partners

The DD Act calls for separate and distinct planning processes in each of the three 

elements of the DD network and does not allow for the alignment of these planning 

processes nor require shared accountability among the various DD network 

components. The Act must be amended to enable ADD to reframe the planning process 

across all network partners. An ideal model would allow all elements of a state’s DD 

network to collaborate on shared goals related to education, health, community living, 

and employment, while preserving their discrete roles and responsibilities for particular 

outcomes. For example, the state DD network could use a coordinated planning 

process to develop one specific goal in the areas of education, health, community living, 

and employment that all components of the network would work on collectively. In a 

coordinated planning model, it is extremely important to strike a careful balance 

between prioritizing shared network goals and continuing to ensure accountability for 

achieving individual results related to the core competencies of each partner.

Implementing a planning process that ensures shared goals and accountability across 

the state DD networks would go a long way toward fostering greater focus on a 

common set of objectives and projected outcomes. Furthermore, a coordinated planning 

process would likely result in a more efficient blending of resources among the various 

components of the DD network and foster increased sustainability through collective 

responsibility. 

One technical adjustment that should be made is to modify the timing of the planning 

process, so that plans from state DD networks are developed in five-year intervals, with 

a fifth of the states submitting each year. Given ADD’s constrained resources, this 
25

would allow the agency to conduct a higher quality review and provide better feedback 

to state DD networks during their planning processes.

1.2.2. Pursuing Uniform Data Collection, Consistent Performance 

Measurement, and Shared Accountability

ADD invests heavily in the data collection efforts of the DD networks, but the emphasis 

has traditionally been on outputs rather than outcomes. As a result, the agency is 

constantly challenged to demonstrate through data the impact the networks are having 

on implementation of the DD Act in the field. It is clear that the DD networks are playing 

a critical role in the evolution of several important initiatives at the state level, but a lot of 

this work is anecdotal or not adequately captured under the performance measurement 

tools required by the Office of Management and Budget (OMB). The DD network needs 

to collect the kinds of data that demonstrate the true impact, effectiveness, and 

achievement of the individual components and the overall network. 

In response to this challenge, ADD has focused on improving overall data collection 

efforts, including the development of a uniform set of key indicators. Each network will

be held accountable for making progress toward each indicator, by a certain increment, 

in alignment with the principles of the DD Act. The University Centers of Excellence in 

Developmental Disabilities (UCEDDs) and the state DD councils have established 

workgroups, working with ADD staff, to develop a logic model and alternative data 

collection methods. The P&As have an independent workgroup developing 

recommended standards. Additionally, more than half of all state DD councils have 

begun to use the DD Suite data management system to manage and compile outcome 

data. DD Suite is an enterprise performance management system designed specifically 

to manage DD council projects and data more efficiently and effectively, and to 

streamline completion of annual federal reports. It is a user-friendly tool for collecting, 

monitoring, and managing data from projects; collecting federal performance data; 

completing the State Plan and Annual Program Performance Report (PPR) and creating

internal reports for monitoring and analyzing council projects. State DD councils are 
26

currently required to submit their state plans on DD Suite; now, and beginning in fiscal 

year (FY) 2012, PPRs must also be completed on DD Suite.

A coordinated planning process with mutual objectives and expectations will help in the 

creation of a consolidated data collection effort. However, beyond strengthening the 

data collection efforts of ADD and the DD network, it is important to develop an 

evaluative model that can combine data from various federal sources (including RSA911, CMS, Department of Education, and SSA. Such a model would allow ADD and its 

federal partners to assess ID/DD outcomes, identify policy barriers and service gaps, 

and complete ongoing trends analyses to determine whether the quality of life of people 

with ID/DD and their families is improving over time. Several challenges must be 

addressed in developing such a model.

First, ADD currently has no legislative authority to require federal partners to work 

toward a more synergistic data collection/sharing model. Thus, the success of a 

collaborative data collection process across federal systems depends on the willingness 

of various federal agencies and their networks in the field to invest the time and 

resources. Second, the diversity in type and definition of variables, collection samples, 

and timelines among various federal data collection systems would have to be 

addressed in a way that preserves the legitimacy and credibility of a coordinated data 

collection and evaluation model.

These combined strategies would allow the Federal Government to effectively measure 

the impact of ADD, the DD network, and other federal agencies that serve citizens with 

ID/DD on service delivery and outcomes. Furthermore, a more sophisticated data 

collection effort could provide information necessary to demonstrate the importance of 

continued federal investments in ADD and the DD network.
27

1.2.3. Empowering and Guiding State ID/DD Authorities

Support services for people with developmental disabilities are designed, funded, and 

managed primarily by state governments, generally through a state developmental 

disability office. These offices are often a component of a state human services or 

health agency. People with developmental disabilities receive medical services through 

the state Medicaid agency, and may receive time-limited services from the state’s 

vocational rehabilitation office, but the state ID/DD authorities are the primary entities

with the responsibility to meet the support needs of people with ID/DD.

State ID/DD authorities serve more than a million children and adults annually and 

manage over $42 billion in public funding, mainly through Medicaid waiver resources 

(Kaiser Foundation, 2011). The state ID/DD authority is often the primary, if not exclusive, 

system that people with ID/DD and their families rely on for publicly financed supports. 

Because these people are typically born with their disability and have the disability 

throughout their lives, their relationship with the state DD services agency lasts decades.

The DD Act evolved out of a series of measures adopted in the 1960s and early 1970s 

that initially provided grants to states to stimulate community developmental disabilities 

services at the state and local levels. As states began to use Medicaid 1915(c) homeand community-based services (HCBS) waivers to secure federal financial participation 

in noninstitutional services for people with developmental disabilities, the focus of the 

DD Act moved away from direct services toward planning, protection, and advocacy. As 

a result, ADD has maintained a funding and policy relationship with planning entities 

such as the state DD councils, but has little or no connection with the state ID/DD 

authorities that provide services for this population. 

In fact, no federal agency has a direct connection or authority over state ID/DD 

authorities. CMS, which oversees the primary funding source for ID/DD services (1915(c) 

waivers), exercises authority over specific Medicaid reimbursement policy and establishes 

health and safety and other requirements for Medicaid-funded HCBS programs but is not 
28

empowered to take a holistic, population-specific policy approach to the service systems it 

funds. Furthermore, in practice, CMS provides oversight and maintains formal 

relationships with only the state Medicaid agencies, which delegate their authority for 

operating 1915(c) waiver programs that serve people with ID/DD to the state authorities. 

Ultimately, the relationship of CMS to the state ID/DD authorities, as channeled through 

the state Medicaid agencies, is one of insurer or purchaser rather than full policy partner. 

1.2.4. Establishing a Funding Stream for Self-Advocacy

Recognizing the value of the growing self-advocacy movement, NCD recommended in 

Rising Expectations, that HHS support the movement in a manner that does not rely 

solely on the resources of the DD network partners. The funding should be focused on 

capacity building, and the integrity of the self-advocacy movement can only be 

preserved if funding is related to grassroots, community-based advocacy development. 

Thus, this funding should support local self-advocacy organizations and technical 

assistance to local self-advocacy organizations, rather than through the traditional statelevel formulation of the other DD network partners. Similar to the Centers on 

Independent Living program, funding at the local level, rather than at the state level, will 

ensure a more competitive funding process and help preserve the independence of selfadvocacy groups. 

Self-advocates can and should play a more pivotal role in helping shape policies, 

programs, research, and public investments in areas that directly affect their lives. For 

example, self-advocates could greatly inform the development of community-based 

participatory research models (Nicolaidis and Boisclair, 2011).3

1.2.5. Improving Sustainability Through Collective Responsibility

Shared accountability for common objectives and the implementation of a coordinated 

planning process, coupled with improved data collection systems and an expanded DD 

network, are likely to greatly enhance the case for increasing federal investments in the 
29

various programs authorized under the DD Act. However, sustainability must also be a 

shared responsibility—the DD network, states, and community partners must think 

innovatively about how to sustain promising practices over time. For example, the DD 

Act does not require a match among state or local partners competing for a Project of 

National Significance grant. Without this requirement, no incentive exists to ensure the 

continued sustainability of the initiative once the grant period ends. In the current fiscal 

environment, sustainability is a tremendous challenge; all stakeholders in the ID/DD 

system must be committed to addressing this issue through innovation and the

development of additional resources.

1.3. NCD Recommendations to Improve the ID/DD Infrastructure

To increase ADD’s effectiveness as the preeminent federal agency tasked with 

promoting the interests of citizens with ID/DD in federal policy, NCD recommends:

● Congress should give ADD stronger administrative authority to effectively lead 

and coordinate federal policy related to addressing the needs of citizens with 

ID/DD.

● HHS should leverage the newly-created ACL to further elevate ADD’s 

administrative influence and responsibilities within HHS.

● ADD should enter into cooperative agreements and partnerships with other 

federal agencies through the use of various administrative tools.

● Congress should expand ADD’s authority to facilitate stronger coordination 

among the three key components of state DD networks by establishing a uniform 

planning process among state DD councils, protection and advocacy systems, 

and University Centers on Excellence in Developmental Disabilities (UCEDDs).

● ADD should pursue a uniform data collection process among the various 

elements of the DD network and expand existing efforts to develop more 
30

effective tools to measure and evaluate the impact of services, programs, and 

initiatives on people with ID/DD.

● ADD should initiate and lead efforts to build a system to foster increased crosssystem accountability for outcomes for people with ID/DD by encouraging 

multiagency agreements regarding the collection, tracking, and recording of data 

on people with ID/DD.

● Congress should acknowledge and include state ID/DD authorities as an 

additional component of the DD network, with operational funding provided by 

and under the jurisdiction of ADD.

● Congress should provide a separate and distinct funding stream for capacity 

building and infrastructural support to local self-advocacy organizations, and 

should acknowledge these entities as an additional component of state DD 

networks.

● The DD network should formally and more significantly engage self-advocates in 

the formation of policies, practices, research strategies, and public investments 

that directly affect their lives. For example, NCD recommends that UCEDDs 

should expand and leverage existing initiatives with self-advocates using 

community-based participatory research models.

● Congress should focus on improving the sustainability of Projects of National 

Significance (PNS) by passing legislation requiring grantees to solidify a local or 

state match as a condition of receiving federal grant funding for PNS endeavors.
31

SECTION 2. Cross-System Focus to Improve 

Outcomes Across the Lifespan for People 

with ID/DD 

The DD Act outlines eight specific areas of emphasis on which the core components of the 

DD network must focus: quality assurance, education and early intervention, child care, 

health, employment, housing, transportation, and recreation. In response to demands and 

issues that have arisen since the statute’s 2000 reauthorization, NCD recommends that 

the categories be consolidated and that ADD and the state DD networks be allowed to 

focus more holistically on comprehensive priority areas related to addressing the needs of 

people with ID/DD. NCD recommends that the areas of emphasis be consolidated into four 

core areas that cover the lifespan from infancy through aging (figure 3):

1. Early intervention and education 

2. Transition from youth to adulthood 

3. Competitive, integrated employment

4. Ongoing long-term supports, including but not limited to sustained education, 

training, and employment; health and wellness; housing; transportation; and 

recreation. 

Figure 3. Across-the-Lifespan Policy Framework

Source: This framework and figure was developed by the author of this paper solely 

for use in this NCD publication.
32

Any reauthorization effort should consider how to embed the principles of the DD Act in 

a meaningful way into federal programs and activities related to these four core areas. 

For example, the requirement in the DD Act that “all programs for individuals with 

developmental disabilities should meet standards that are designed to ensure the most 

favorable outcome for those served” should be expanded to provide specific criteria for 

each of the federal systems tied to these four core areas. 

This section identifies key opportunities to develop a cohesive, comprehensive federal 

policy across various federal agencies and legislative statutes in each of these four 

areas to ensure a consistent, unified federal commitment to realizing the goals and 

underlying principles of the Developmental Disabilities Assistance and Bill of Rights Act. 

The recommendations are not exhaustive; the intent is to identify emerging 

opportunities over the next two to five years for a coordinated federal response to 

address the needs of citizens with ID/DD. The emphasis is on cross-agency 

collaboration and coordination of federal objectives and resources, using strategic 

tactics deployed through both regulatory and legislative vehicles.

2.1. Recommendations to Improve Early Intervention and Education 

Opportunities

2.1.1. Stronger Cross-Agency Collaboration

Early intervention and access to education are critical areas of federal focus, shared by 

the Centers for Disease Control and Prevention (CDC), the Department of Education, 

ACF and ADD. While interest in early intervention services has skyrocketed among 

families, federal funding for such activities has not kept pace with demand.4 Many 

children with behavioral or developmental disabilities are missing out on vital 

opportunities for early detection and intervention. 5 According to CDC, 17 percent of 

children in the United States have a developmental or behavioral disability such 

as autism, intellectual disabilities, or attention deficit/hyperactivity disorder. However, 

less than 50 percent of these children are identified as having a problem before they 
 

 

 

 

start school, by which time significant delays may have occurred and opportunities for 

treatment been missed. 6 

The Individuals with Disabilities Education Act (IDEA) Amendments of 1990 to 

1997 require states to provide early identification and services to the following infants 

and toddlers: 

● Those with developmental delays. 

● Those with established conditions associated with developmental delays. 

● At the state’s option, children at risk for developmental delays. 

States that do not serve the at-risk population are encouraged to track and monitor 

these children’s development, so they can be referred in the future, if necessary. IDEA 

also mandates that states refer children, free of charge, for a comprehensive, 

multidisciplinary evaluation by a team that, with the family, will determine which services 

are needed for the child (via the Individualized Family Service Plan). Furthermore, it 

requires states to implement coordinated, family-centered, and culturally competent 

community-based systems of care to provide early intervention services for children 

identified as having developmental problems. 

ADD can and should work across public health and education systems as an advocate 

for greater coordination of existing developmental screening and early intervention 

activities. Strategies to ensure a clearer connectivity among ADD, the state and federal 

ID/DD infrastructure, and other state and federal agencies to address early intervention 

needs of children with ID/DD and their families are critically important. 

33
 
34

Recommendations

• ADD should work with the Administration for Children and Families, CDC, 

and the Department of Education’s Office of Special Education Programs 

(OSEP) to 

o review current federal efforts related to early identification and early 

intervention;

o evaluate the ability of systems to work collaboratively at the local and state 

levels to maximize resources and ensure full coverage; and 

o identify policy and implementation barriers that impede the ability of 

systems to work collaboratively, including variation in core objectives, 

target populations, performance outcomes, and evaluation/accountability 

measures. 

• CDC should work with ADD to inform current data collection processes 

related to the outcomes of developmental screening and early intervention 

of children with ID/DD to better capture the effectiveness of specific 

publicly financed interventions on developmental outcomes.

This collaboration should include CDC aligning data collection efforts to the 

definitions of developmental disabilities outlined in the DD Act so as to avoid 

confusion and ensure greater coordination with ADD’s data collection systems.

• OSEP should obtain input and feedback from ADD in its current revision 

process of the IDEA accountability reporting system.

Since early 2011, OSEP has been developing proposed changes to the State 

Performance Plan/Annual Performance Report (SPP/APR) process as it relates 

to Part C (early childhood intervention and preschool education). To ensure that 

any changes to Part C indicators result in systematic improvements that address

the needs and improve outcomes for children with ID/DD, ADD can play an 

instrumental role in reviewing proposed revisions and representing the interests 

and perspectives of children with ID/DD and their families.
35

• ADD should serve in a strong advocacy role to ensure that improvements 

to existing early intervention monitoring standards are captured in any 

future reauthorization of IDEA. 

In 2002, a committed group of advocates, parents, State Education Agency

directors, monitoring experts, and Part C directors worked with OSEP to develop 

recommendations to improve monitoring requirements outlined in IDEA. The 

recommendations resulted in an innovative monitoring model that incorporated 

principles, indicators, sanctions, and incentives for state early childhood 

intervention and preschool programs to focus on improving outcomes for children 

with ID/DD. The working group also recommended that legislative language be 

added to IDEA that requires states to use data to inform and effectuate systems 

change. These recommendations were not included in the last reauthorization of 

IDEA (IDEA-2004); thus, monitoring and evaluation challenges persist. ADD 

should play a pivotal role in encouraging a reconsideration of these 

recommendations in future IDEA reauthorization efforts. 

7

2.1.2. Improved Educational Outcomes

Among the strongest predictors of postschool employment success for 

young people is whether they earn a diploma. Only 34 percent of students 

with intellectual disabilities, 40 percent of students with multiple 

disabilities, and 56 percent of students with autism graduated from high 

school with a regular high school diploma during the 2007–2008 school 

year (U.S. Department of Education, 2010). Among all students, those 

with the most significant cognitive disabilities are the least likely to 

graduate with a regular high school diploma (ADD, 2011, p. 3).

Federal public policy and resources should reflect a stronger commitment to the 

implementation of fully inclusive education practices, which benefit all students, 

including students with ID/DD. Public policies should promote students with special 

needs as part of the general education population and not as a segregated 
36

subpopulation. Overwhelming evidence demonstrates that fully inclusive schools—in 

which students with special needs are engaged in the general educational setting and 

have access to the general curriculum—have higher academic performance outcomes 

for students with disabilities as well as their peers who do not have disabilities (Wagner 

et al., 2006). In contrast, placing students in segregated classrooms according to 

diagnosis or special needs leads to detrimental outcomes (Freeman, SFN, 2000). 

Public education should have the highest expectations for all students and promote full 

access to a free and appropriate public education in the most inclusive setting possible. 

To realize this vision, ADD must assume a stronger leadership role in public education 

policy by working directly with the Department of Education on regulatory guidance, 

policy framing, and implementation of various legislative statutes that affect students 

with ID/DD. The reauthorization of the DD Act, IDEA, and the Elementary and 

Secondary Education Act (ESEA) should include provisions that affirm a connective role 

and shared responsibility between ADD and the Department of Education to coordinate 

on policy issues that affect students with ID/DD. 

Recommendations

To improve the educational opportunities and advancement of students with ID/DD, 

NCD recommends:

• Increase the federal commitment to the full inclusion of students with 

ID/DD in general educational settings (including but not limited to curricula, 

classrooms, personnel development, outcome data, diploma opportunities) 

through consistent focus in both administrative action and statutory 

changes through the reauthorization of the DD Act, IDEA, and ESEA.

Reauthorization of the DD Act creates a tremendous opportunity to reflect on the 

educational needs of children and youth with ID/DD and, through legislation, to 

establish a stronger, more proactive collaboration between the nation’s 

developmental disability and education systems. However, the DD Act is not the 

only legislative reauthorization vehicle through which cross-system collaboration 
37

and intensified focus on the educational needs of students with ID/DD can be 

strengthened. The reauthorization of both IDEA and ESEA offer important 

opportunities to facilitate greater engagement of the DD system into the planning 

processes, goals, incentives, and evaluation of the nation’s public education 

system. 

A specific approach to engaging the DD system in inclusive education efforts is 

to include the system in creating Individualized Education Programs (IEPs) for

students with ID/DD. Another strategy is for ADD and the DD network to 

collaborate with the educational system to develop incentives and penalties to 

encourage school districts to offer more inclusive educational settings for all 

students, including students with ID/DD. School districts must have both 

meaningful incentives and more stringent performance measures tied to funding 

to encourage their transformation to fully inclusive settings as a key strategy for 

effectuating systemwide education reform. For example, using performance 

measures that evaluate the level of inclusion over time as a prerequisite to 

receiving a National Blue Ribbon School award would help make inclusion a top 

priority among school districts. 

Preparing teachers to implement Universal Design for Learning (UDL) in 

classrooms that have both students with disabilities and peers who do not have 

disabilities is essential to ensure greater inclusion of students with ID/DD. Both 

general education and special education teachers require enhanced professional 

training and ongoing mentoring supports to enable them to effectively implement 

inclusive education practices. The University Centers of Excellence in 

Developmental Disabilities (UCEDDs) could play a more prominent role in 

working with universities to provide this additional training during teachers’ 

educational experiences.
38

• Leverage legislative reauthorization vehicles and cross-agency activities to 

promote family and community involvement in the successful inclusion of 

students with ID/DD in public education. 

Families are an essential component of the successful inclusion of students with 

significant intellectual or developmental disabilities into general educational 

settings, but the families of students with significant disabilities are often

disenfranchised and isolated from other families in the educational system. ADD 

and the Department of Education should work collaboratively to provide 

incentives to school districts to reach out to these families in culturally sensitive 

and meaningful ways. Additionally, Title II of the DD Act should be enhanced to 

focus on supporting families of students with ID/DD through education, advocacy, 

and information-sharing activities to help families navigate the public education 

system. 

• The Department of Education, in conjunction with ADD, should strengthen 

relevant indicators to better measure local school district performance in 

meeting the needs of students with ID/DD.

OSEP should request ADD to review and provide feedback on any proposed 

revisions of the IDEA accountability reporting system (the SPP/APR) process) as 

it relates to Part B (education and transition) to ensure that any changes or 

enhancements to Part B indicators result in systematic improvements that 

respond to the needs of and outcomes for students with ID/DD. Specifically, ADD 

should promote indicators that establish a baseline with respect to inclusion, 

access to assistive technology, use of UDL, access to age-appropriate general 

education curricula, and postsecondary outcomes.

• Improve federal response to IDEA enforcement by expanding cross-agency 

investments in protection and advocacy efforts related to IDEA compliance.

An overwhelming demand persists among families of students with ID/DD for 

support from the protection and advocacy sector to ensure that school districts 

comply with IDEA principles. Most families lack the financial resources to hire an 
 

 

 

 

 

 

 

 

 

 

 

 

attorney to negotiate on their behalf during conflicts with school districts that 

refuse services the student is eligible to receive. Thus, families often turn to 

Protection and Advocacy for Individuals with Developmental Disabilities (PADD) 

or Protection and Advocacy for Individuals with Mental Illness (PAIMI) programs, 

which receive funding from HHS. Although as many as 50 percent of PADD 

cases and 11 percent of PAIMI cases are related to IDEA compliance and 

enforcement issues, the Department of Education provides no dedicated funding 

stream to support protection and advocacy agencies’ education work. 8 As a 

result, the protection and advocacy network is often unable to provide support to 

legal cases related to topics such as employment, abuse and neglect, 

independent living, and denial of services. The Department of Education should 

request a separate funding stream in its annual budget to support the continued 

work of the protection and advocacy network on IDEA compliance cases. The 

additional funding, with the approval of Congress, would ensure that protection 

and advocacy entities can focus resources from ADD and other federal agencies 

on other categories of legal cases beyond IDEA compliance that currently cannot 

be pursued. 

2.2. Ensuring High Expectations and Opportunities for People with 

ID/DD As They Transition from Youth to Adulthood 

Today’s youth with ID/DD have expectations of future employment, yet 

continue to struggle to access competitive integrated employment. Data 

from the National Longitudinal Transition Study-2 (NLTS2) show that 

86 percent of students with disabilities who are of transition age definitely 

believe that they will work in their adult years. When adding in those that 

feel they will probably work, that percentage moves to 96 percent 

(Kiernan, 2010). Even with a diploma, youth with intellectual disabilities 

demonstrate the lowest rate of paid employment among students with 

disabilities (29.8 percent), 1 to 4 years after exiting high school (Newman 

et al, 2010). In one recent study of 338 high school graduates with 

39
 
40

developmental disabilities, only 14.2 percent were employed in positions 

paying at least minimum wage (Simonsen, 2010) (ADD, 2011, p. 3).

Educational and vocational guidance in preparation for adulthood is critical 

for all youth, including those who have significant disabilities. The 

discussion of transition should begin as early in a person’s life as possible. 

Evidence-based research has conclusively documented that people with 

disabilities who were educated in inclusive settings, exposed to work 

experience and career exploration, and participated in a paid work 

experience while in school had better postsecondary and employment 

outcomes (Cimera, 2008).

When state education, vocational rehabilitation, workforce development, Medicaid, and 

other public agencies work closely together to support and promote the growth and 

development of youth with significant disabilities, these youth benefit from the 

synergistic coordination of supports and are able to achieve better outcomes. To ensure 

effective coordination among these entities, systemic changes must allow for flexible 

braiding of resources and the entities must agree that publicly financed supports should 

focus on enabling youth to achieve optimal outcomes associated with postsecondary 

education, integrated employment, independence, self-sufficiency, and economic 

advancement.

Of all students with disabilities, those with ID/DD have the poorest postschool outcomes

(Hart, Grigal, and Weir, 2010). Until the past decade, the option of attending college—

especially the opportunity to participate in typical coursework—was rarely available to 

high school students with ID/DD. The usual options for students with ID/DD, especially 

those past the age of 18, had previously been limited to segregated life skills or 

community-based transition programs. 
41

2.2.1. Postsecondary Education As a Tool for Effective Transition

The number of post-secondary education (PSE) programs designed for 

students with ID/DD has increased exponentially in recent years, and 

today there are approximately 250 PSE programs for students with 

intellectual disabilities in 37 states. 149 of these programs responded to 

the 2010 National Survey of Inclusive PSE programs conducted by the 

Institute for Community Inclusion (ICI). Of these respondents, 50% are 

four-year colleges or universities, 40% are two-year colleges, and 10% are 

considered trade/technical schools.9 Forty-five percent of respondents 

indicated that they served only adults with ID, 26% served dually enrolled 

students (meaning students who were enrolled in both high school and 

college simultaneously), and 29% served both of these groups. The 

2010 survey responses indicated that programs vary considerably in terms 

of level of student integration, access to typical courses, and disability 

services. For example, 49% indicated that students did have personcentered planning. It is difficult to fully evaluate the effectiveness of the 

programs, as only 52% of the PSE programs indicate that they collect 

outcome data. 

Inclusive PSE options have great potential to improve transition outcomes for youth with 

ID/DD. Of all disability groups, youth with intellectual disabilities have the lowest rates of 

education, work, and preparation for work after high school. Nationally, interest is

growing in postsecondary education as a way to improve employment and other key life 

areas for people with ID/DD, as those who participate in PSE tend to obtain better jobs 

with higher wages. Research has demonstrated that comprehensive transition and 

postsecondary programs have had a positive effect on student rates of employment, 

wages, social networks, and self-determination skills (Guenette, 2003). Recent studies 

indicate that the strengths of this model of service delivery are employment training and 

community participation—in one state, 87 percent of students were employed or in 

training positions, and 100 percent were involved in integrated community activities 
42

(Zafft, Hart, and Zimbrich, 2004). Another study found that participation in PSE

correlated positively with competitive and independent employment (Zafft et al., 2004). 

This data indicates that these programs are offering new hope and leading to greater 

employment, independence, and community living for students with intellectual 

disabilities.

Vocational rehabilitation (VR) agencies can also play an important role by supporting 

the inclusion of youth with ID/DD in postsecondary programs and including this 

participation in the student’s Individualized Plan for Employment (IPE). The following 

information from ThinkCollege.net demonstrates the positive effect PSE is having on the 

attainment of integrated employment by youth with significant disabilities.10 

● In 2007, of the 36,154 youth with ID/DD between the ages of 16–26 years who 

completed vocational rehabilitation services, 1,223 (3.4%) participated in some 

type of PSE program and 537 (1.5%) successfully completed a nondegree 

program, associate degree, vocational/technical certificate, bachelor’s degree, or 

graduate degree program. Of the 537 people who attained higher education as a 

component of receiving vocational rehabilitation services, 312 (or approximately 

(58%) went onto competitive employment, earning an average of $338 per week. 

The data shows that attending PSE resulted in a 48 percent employment rate 

and average wages of $316 a week. In contrast, youth who did not receive PSE 

services but left VR services to take a job (32%) had an average weekly income 

of $195.

● Data from the national vocational rehabilitation database (RSA 911) shows that 

youth with ID who participated in PSE were 26 percent more likely to leave VR

services with a paid job, as compared to youth who did not participate in PSE, 

and they earned an average of 73 percent more per week. However, despite 

positive employment outcomes for youth with ID who receive PSE, the 

percentage of youth who receive these services as part of their IPE is low. 
43

● Further study is needed on the impact of PSE on employment outcomes for 

people with ID/DD, especially with regard to the role of vocational rehabilitation. 

Lifelong learning promotes academic, professional, and personal development, 

and helps all citizens enjoy lives of dignity and purpose.

Initial federal investments to support the continued expansion and evolution of PSE 

programs targeting students with ID/DD must be sustained and leveraged with 

coordinated VR resources. The availability of internships, apprenticeships, and skilled 

training through PSE programs drives significant positive outcomes for students with 

ID/DD by broadening their exposure to a wide array of vocational and professional 

opportunities in the community.

The amendments to the Higher Education Opportunity Act (HEOA) that allow nondegree-seeking students with ID/DD to pursue work-study and federal grant assistance, 

have greatly enhanced the ability of students with ID/DD to access PSE programs. 

Unfortunately, the process that PSE programs must complete in order to receive 

approval for offering such assistance is quite complex. Therefore only six PSE 

programs have been authorized to provide federal student aid packages for nondegree-seeking ID/DD students. Steps must be taken to simplify this process, and to 

encourage more PSE programs established for ID/DD students to take advantage of the 

federal student aid provisions authorized in HEOA. 

2.2.2. System Change: Transitioning Toward Excellence in 

Achievement and Mobility

In February 2011, to address some of the systemic barriers and support the transition of

youth with ID/DD to adulthood, Rep. Gregg Harper (R-MS) introduced a trio of bills 

known as the Transitioning Toward Excellence in Achievement and Mobility (TEAM) 

legislation. The legislation—which includes the TEAM-Education Act (H.R. 602), the 

TEAM-Empowerment Act (H.R. 603), and the TEAM-Employment Act (H.R. 604)—was

developed after 18 months of discussions with a group of national advisors, including 
44

self-advocates with ID/DD; parents and family advocates; providers of transition 

services; practitioners currently working in publicly financed systems in the areas of 

education, VR, and Medicaid systems; and researchers. The TEAM legislation is the 

first comprehensive legislative package aimed at cross-system transformation and 

alignment of planning processes, objectives, funding streams, desired outcomes, and 

performance measures to improve transition outcomes for youth with ID/DD. The 

legislation seeks to strengthen accountability, clarify expectations, expand flexibility, and 

align systems to ensure that publicly funded assistance is used effectively to provide

young people with a significant disability with the opportunity, encouragement, and 

support to pursue a postsecondary education, become gainfully employed in an 

integrated setting, and contribute to and engage in meaningful ways in typical 

community settings after they leave high school.

● The TEAM-Education Act (H.R. 602) would amend the Individuals with 

Disabilities Education Act by requiring that transition components be included in 

IEPs for all IDEA-eligible students at the age of 14, expanding the definition of 

transition services to include customized employment strategies and selfdetermination activities, and clarifying the fact that local education authorities 

may use discretionary dollars to bring in transition expertise or contract out 

transition services. H.R. 602 would require school districts to include a 

representative of the state ID/DD authority on the IEP team for every student with 

an intellectual or developmental disability from age 14 until the student leaves the 

school system. 

● The TEAM-Empowerment Act (H.R. 603) would amend the DD Act to establish 

transition planning and service divisions within the state ID/DD authorities to 

establish a formal role and responsibility on the part of the state authority for the 

effective transition of youth with ID/DD to adulthood. H.R. 603 would require state 

authorities to work with these youth to develop Individual Transition Plans to 

improve outcomes and increase self-determination. The bill would increase 

accountability of these authorities by allowing the commissioner of the ADD to 
45

provide guidance and assistance to state ID/DD authorities, to help them be 

effective partners in the transition process of youth with ID/DD.

● The TEAM-Employment Act (H.R. 604) would amend the Rehabilitation Act to 

realign preferred outcomes for people with significant disabilities and streamline 

public funding by requiring the VR systems to actively engage with other state 

entities. The bill would promote innovation and accountability through 

demonstration grants focused on system reform.

The TEAM legislation takes important steps to remove the current policy barriers and 

prioritize the use of publicly funded supports to encourage postsecondary education and 

competitive, integrated employment as a preferred outcome for youth with ID/DD 

transitioning to adulthood. Some critics of the trio of bills have expressed concerns 

about the prohibition on federal funds to support segregated outcomes, such as day 

habilitation or center-based employment settings. State VR entities have raised 

questions about the ability of the VR system to take on many of the responsibilities the 

new laws would place on the system.

2.2.3. System Change Through Reauthorization of the Workforce 

Investment Act

Transition to adulthood of youth with significant disabilities will be a driving policy issue 

as Congress considers the reauthorization of the Workforce Investment Act. In 2011, 

the Senate Committee on Health, Education, Labor, and Pensions (HELP) released a 

comprehensive draft reauthorization package that includes major changes aimed at 

transforming the vocational rehabilitation system to enable it to focus on improving 

outcomes for youth with significant disabilities. Several dramatic enhancements have 

been added to the legislation to facilitate the transition of these young people into 

adulthood, including the following: 
46

● Direct emphasis on the preferred outcomes of competitive, integrated 

employment and postsecondary education for all youth, including youth with 

significant disabilities. 

● Required cooperative agreements among VR and other state agencies (including 

state ID/DD authorities) critical to the provision of transition, employment, and 

long-term supports and services to citizens with significant disabilities. 

● Establishment of a holistic set of preemployment transition services to prepare 

youth with significant disabilities for entry into the general workforce. 

● Creation of local transition coordinators in the VR system to ensure the effective 

delivery of preemployment transition services for youth with significant disabilities 

and to increase links between the VR system and special education. 

● Targeting of 10 percent of all state VR resource allotments toward 

implementation of the transition components of the legislation. 

● Establishment of national system-change demonstration projects on the 

transition of youth with significant disabilities. 

● Funding directives to encourage more intensive state focus on the expansion of 

supported employment services to youth with significant disabilities most at risk 

of being placed in sheltered work or at risk of not securing employment in the 

general workforce.

Several practitioners and advocacy leaders have called for an expansion of VR 

transition services to youth with significant disabilities through the age of 26 years. 

Transition provisions outlined in the legislative proposal have inconsistent age eligibility 

requirements. State VR agencies currently provide transition supports in many cases 

through age 26—any decrease in the age of eligibility for services in the WIA 

reauthorization would be regressive to the status quo. This is a particularly important 
47

policy concern for people with significant disabilities who continue to participate in 

secondary education until the age of 22, then enter a postsecondary education 

program. Any reduction in eligibility age for the use of preemployment transition 

services or other VR supports could put many of these people at great risk of being 

pushed out of integrated environments where they are thriving.

There is growing concern about the capacity of state vocational rehabilitation agencies 

to implement new strategies to improve transition outcomes for youth with ID/DD unless 

resources to scale up existing VR agencies are available and opportunities to provide 

training to VR counselors on evidence-based best practices are increased. 

Despite these concerns, the HELP Committee’s efforts to develop a series of 

comprehensive reforms to the Workforce Investment Act represent a firm commitment 

to improve outcomes for youth and young adults with ID/DD. 

Recommendations

To improve the Federal Government’s role in and impact on the transition of youth 

with ID/DD into adulthood, NCD recommends:

• Research: The Department of Education’s Office of Special Education and 

Rehabilitative Services (OSERS) and the National Institute on Disability and 

Rehabilitation Research (NIDRR) should invest in further research to evaluate 

the effect of postsecondary education opportunities on the transition outcomes of 

youth with ID/DD.

• Funding for expansion: Congress should increase funding to support the 

expansion of the Department of Education’s Transition and Postsecondary 

Programs for Students with Intellectual Disabilities, which were authorized as 

part of the Higher Education Opportunity Act. Additionally, the U.S. Department 

of Education should take steps to simplify the administration of the provisions 
48

authorized in HEOA that allow non-degree ID/DD students to receive federal 

student grants and access work-study options.

• Cross-agency coordination: Congress should pass legislation that promotes a 

comprehensive focus across federal systems on improving transition outcomes 

for youth and young adults with ID/DD, and provides incentives for the 

transformation of state and local transition systems by fostering and supporting 

innovation and increased cross-agency coordination. 

• Role of VR agencies: Congress should use the reauthorization of the Workforce 

Investment Act as an opportunity to expand the role and responsibilities of state 

VR agencies in identifying opportunities and supports for youth with ID/DD to 

ensure their successful transition into postsecondary education and integrated 

employment opportunities after high school.

2.3. Recommendations to Improve Employment Outcomes

According to the January 2011 Current Population Survey (CPS), 

approximately 17 percent of American citizens with disabilities are 

employed, compared to 63 percent of individuals without disabilities. For 

individuals living with ID/DD, the likelihood of participation in integrated 

employment is even lower, with state ID/DD agencies reporting that only 

22 percent of the individuals served by these agencies participate in 

integrated employment (ADD, 2011, p. 3).

Despite public funding for the provision of employment services for people with 

disabilities who require significant supports, the employment rate of people with ID/DD 

remains low. Four out of five people with significant disabilities are not considered part 

of the labor force (ACS, 2008). A review of trend data from 2003 through 2009 confirms 

that participation in sheltered or facility-based employment and nonwork services grew 

steadily, suggesting that employment services continue to be viewed as an add-on 
 

 

 

 

 

 

 

 

 

service rather than a systemic change (Butterworth, Smith, Hall, Migliore, and Winsor, 

2009; Mank, 2003). As the Institute for Community Inclusion (ICI) reported in its 

2010 publication StateData: The National Report on Employment Services and 

Outcomes, 

In FY2009, an estimated 20.3 percent of individuals receiving day 

supports from state IDD agencies received integrated employment 

services. The data demonstrate a decline in the estimated percentage of 

people served in integrated employment services (from 23.7 percent in 

1999), suggesting that the growth seen in supported employment between 

the mid-1980s and mid-1990s has not continued. The data also 

demonstrate an increase in the percentage of people served in facilitybased and non-work settings. The service setting with the highest reported 

percentage of individuals receiving services in FY2009 was communitybased non-work (42.6 percent), followed by facility-based non-work 

(36.1 percent) and facility-based work (27.1 percent). Variability in the 

number of states that are able to report data in these three individual 

service categories limits our ability to pinpoint the specific setting in which 

growth is occurring; however, an analysis using data from states that are 

able to report data in each of the three service categories suggests that 

the percentage of individuals served in facility-based and non-work 

settings is increasing. (Butterworth et al., 2011, p. 8) 

The new ICI data confirms that states continue to vary widely in their commitment to 

integrated employment—nationally, it is estimated that only 20.3 percent of those who 

receive day supports from state IDD agencies participated in integrated employment 

services during FY2009 (Butterworth et al., 2011, p. 20). This number has slowly 

declined after reaching 25 percent in FY2001. 

To reverse this inequity in our country and optimize the self-sufficiency of people with 

ID/DD, we must take steps to ensure that they have meaningful opportunities to secure 

49
 
50

postsecondary education, integrated employment, and economic advancement. People

with ID/DD should have the opportunity to pursue competitive, integrated employment. 

2.3.1. Employment First: Integrated Employment As the Desired 

Outcome

People with ID/DD, their families, employers, and, increasingly, state and federal 

policymakers recognize the value of employment for people with disabilities and the 

significant contributions they make to the national workforce and the economy. The 

engagement of these people in the labor pool has a considerable financial impact, 

generating income that is returned to the economy in the form of tax revenues and 

reducing their reliance on public resources for needed services and supports (Cimera, 

2007). The return on employment-related expenditures—currently estimated by the 

Social Security Administration (SSA) to be less than 0.5 percent—will increase as more 

people with intellectual and other significant disabilities enter and remain in employment 

(ACS, 2009).

States furnish a wide range of employment-related services and long-term supports 

under Medicaid waiver programs. In addition, funding for job training and placement is 

typically available from state offices of vocational rehabilitation, One Stop Career 

Centers, and other state and federally funded programs providing transitional 

assistance from school to employment, although this funding is usually time-limited. 

● The ongoing recession and soaring unemployment rates present even greater 

challenges for citizens with ID/DD who wish to engage in competitive, integrated 

employment. 

● The data shows that people with developmental disabilities who are employed in 

regular community jobs has fallen nationwide in recent years. Equally disturbing 

is data suggesting that the focus of service provision has, in many regions, 

shifted away from employment and job supports toward continued reliance on 
51

prevocational services, segregated day habilitation, and community-based 

nonwork activities—these kinds of services do not help participants access 

productive career paths or meaningful work in the community (Butterworth et al., 

2011).

Unemployment is not the only economic challenge that disproportionately affects people 

with ID/DD. Because of the way Social Security, Medicaid, and other means-tested 

public supports were created, citizens with ID/DD are sentenced to a life of cyclical 

poverty if they wish to be deemed eligible for supports under these programs. Current 

asset limits attached to eligibility requirements for Supplemental Security Income (SSI) 

and Medicaid create disincentives to work that ultimately discourage people with ID/DD 

from seeking employment. Only about 9 percent of those who receive SSI are employed, 

with average annual earnings of less than $500 a year. Less than 0.005 percent of those 

who receive SSI ever leave the system and move onto employment.

According to recent projections, annual income maintenance payments to SSI recipients 

will reach a startling $1 trillion by 2018.

States and the Federal Government could more effectively support the capacity of 

people with ID/DD to live and work in the community if they redesigned home- and 

community-based Medicaid waiver programs to focus on self-determination, personcentered service planning, individual budgeting, and participant-directed service 

delivery. Policymakers are taking stock of the intent and purpose of the services 

provided, as well as the outcomes that are being achieved. Increasingly, support dollars 

are being seen as investments in people’s lives and the means by which those with 

even the most intensive needs can become productive and contributing members of 

society. Accordingly, the emphasis of public funding in many states is being shifted to 

support activities that enable people with developmental disabilities to fully participate in 

work and become active members of their communities. However, as Rusch and

Braddock noted, “While supported employment has made significant gains since its 

formal introduction in 1984 (P.L. 98-527), segregated services continue to outpace the

growth of supported employment” (Rusch and Braddock, 2004, p. 48).
52

Several forward-thinking state DD agencies are implementing comprehensive 

Employment First policies to guide the funding and delivery of supports to eligible 

persons throughout the state’s service delivery system. Employment First strategies 

consist of a clear set of guiding principles, policies, and practices promulgated through 

state statute, regulation, and operational procedures that identify employment in typical 

work settings as the priority for state funding and the focus of supports furnished to 

people with developmental disabilities during the day. States use Employment First

policies to operationalize a commitment to the principle that public funds are most 

appropriately used as investments in people’s lives, helping them access integrated 

employment, full community participation, and optimal well-being. 

Employment First policies anchor the service delivery system, focusing funding, 

resource allocation, training, daily assistance, and even the provision of residential 

supports on the overall objective of employment and strengthening the capacity of those 

who receive publicly financed supports to enter the workforce and become contributing 

members of society. These state initiatives have shown that when supports and funding 

streams are focused on getting people with ID/DD into integrated employment, a greater 

proportion of citizens with ID/DD end up going to work. The key is to make sure that the 

commitment among local, state, and federal public partners is solid and sustained over

time. A diversion of investment or low expectations for people with disabilities can 

perpetuate impediments in current policies, practices, and programs. Figure 4 shows

the disparity among states in terms of their rates of participation in integrated

employment services, ranging from Arkansas at 4 percent to Washington at 88 percent. 

Other states with high participation rates in integrated employment services are

Oklahoma (60%), Connecticut (54%), Louisiana (47%), and New Hampshire (46%). 

Although Employment First policies are being adopted by many states, definitions of 

“integrated employment” and the approaches used to accomplish operational objectives 

vary, reflecting the unique characteristics of each state’s service delivery system. To

support states that are committed to changing systems and infusing an Employment First

paradigm into policy and practice, the State Employment Leadership Network (SELN) 
53

Figure 4. Percentage of People with ID/DD Participating in 

Integrated Employment Services by State, 200911

Source: Data shared by NASDDDS Executive Director Nancy Thaler in July 2011 during 

an NCD-hosted Congressional Briefing on the state of long-term supports and services 

for individuals with ID/DD in honor of the 12th anniversary of the Olmstead decision. 

Data originated from: Butterworth, J., Cohen Hall, A., Smith, F.A., Migliore, A., Winsor, 

J.A. (2011). StateData: The National Report on Employment Services and Outcomes. 

Institute for Community Inclusion (UCEDD), Boston, MA: University of Massachusetts. 

Pg. 19.

was created in 2007 through a partnership between the National Association of State

Directors of Developmental Disabilities Services (NASDDDS) and the Institute for

Community Inclusion (ICI). SELN provides training and technical assistance to 26 states

on promising practices and lessons learned in other states, including ideas and 

strategies related to goal-setting, data collection, policy development, and performance 

measurement. The network focuses on a wide range of policies, operational practices, 

funding methodologies, and training procedures designed to significantly increase the 

number of people with developmental disabilities who are employed in integrated 

community jobs. In 2009, ICI and NASDDDS compiled a list of key Employment First

strategies that states have been implementing in recent years (see table 1). 12
54

Table 1. Examples of State-based Approaches

to Implementing Employment First

(analysis of the State Employment Leadership Network, 2009)13

Employment First Strategies States

Adopting rules reaffirming that integrated employment is considered the 

primary service option for adults receiving day habilitation services and 

supports.

Colorado

Including requirements that integrated employment be addressed in each 

recipient’s Individual Service Plan (ISP) each time the plan is developed, 

revised, or reviewed.

Colorado

Developing and implementing specific target goals, including identifying a

percentage of people who are in nonwork and sheltered employment that

will move to integrated employment by a designated time, with specific 

benchmarks established at two intervals over a five-year period.

Florida

Providing mandates to local offices, in the form of an administrative 

directive from the agency leadership, requiring the redirection of at least 

5 percent per year from Adult Day Training to employment.

Florida

Establishing, through state code, the goal of full-time employment as the 

optimal outcome of day service delivery, but allowing for part-time 

employment when deemed in the best interest of the individual consumer 

or voluntary work on a temporary basis if no jobs are available.

Oklahoma

Including statutory provisions requiring that people with ID/DD have 

access to employment and the training necessary to sustain employment.

Pennsylvania

Identifying employment as the first day service that should be explored. Tennessee

Identifying employment as the most appropriate service unless there is a 

compelling reason for recommending another service.
55

Employment First Strategies States

Including provisions to ensure that choice is essential and assistance is 

provided to help consumers find and change jobs that reflect their 

interests and skills.

Tennessee

Including provisions to ensure that jobs offer advancement (career 

development) if the person so chooses.

Tennessee, 

Washington

Requiring that services support a job for everyone who wants one. Tennessee

Providing supports to pursue and maintain gainful employment in 

integrated settings in the community shall be the primary service option 

for working age adults, with deviations requiring authorization.

Washington

Requiring that steps be taken toward integrated employment for those not 

currently working in such settings.

Washington

Ensuring the capability to track changes and work status over time. Pennsylvania, 

Washington

Furnishing technical assistance to providers if Employment First as a 

practice is to be successful.

Washington

Source: Kiernan, B. and Moseley C. (2009) “Employment First: A Policy Position for 

States – Focusing on Integrated Employment as the Desired Outcome”. Prepared for 

the State Employment Leadership Network and the Collaboration to Promote SelfDetermination in 2009. 

ADD can play a pivotal role in helping these state systems foster an expanded focus on

Employment First strategies across the country. Proponents of these strategies have 

long advocated for the establishment of a federal Employment First policy in the form of 

legislation, regulatory guidance, or an Executive Order. ADD could lead the discussion 

about establishing a federal Employment First policy and possibly even including an 

Employment First section in the DD Act when it is reauthorized. ADD can also promote 

the continued evolution of Employment First strategies by leveraging resources to 
56

provide additional support for such endeavors. ADD has recently demonstrated a strong 

commitment by awarding five-year Partnership in Employment Systems Change grants 

to six states. These grants reflect a strong commitment on the part of the agency to 

promote a solid focus on employment systems change, especially given ADD’s current

budget constraints. 14

Employment is a cross-agency responsibility of the federal government.

Recommendation

• NCD recommends that the Administration issue an Executive Order 

directing all federal agencies involved in the education, training, and 

employability of citizens with ID/DD to implement an Employment First 

platform to prioritize a focused commitment to the employment of people 

with ID/DD in integrated employment.

2.3.2. Reconceptualizing Supported Employment Services 

Reauthorization of the Workforce Investment Act (WIA) provides an extraordinary 

opportunity to reform the vocational rehabilitation system with the goal of 

reconceptualizing the role of supported employment services (SES) to ensure an 

expanded and more effective use of these services to realize the aims of Employment 

First policy. Recent attempts by Congress to craft WIA reauthorization legislation take 

several important steps toward this aim, including the following proposals:

● Extend supported employment services to 24 months. 

● Require cooperative agreements among vocational rehabilitation and other state 

agencies critical to the provision of transition, employment, and long-term 

supports and services to citizens with significant disabilities. 
57

● Strengthen data collection and reporting requirements to capture more detailed, 

outcome-oriented data, stratified by disability type, to better evaluate the 

effectiveness of the VR system in helping people with disabilities complete 

employment objectives (emphasizing attainment of competitive, integrated 

employment).

● Focus the attention of research and training activities on supporting providers of 

sheltered employment who want to transform into providers of community-based 

employment and supports that lead to competitive, integrated employment, with 

restrictions on the use of training dollars and technical assistance that perpetuate 

segregated or sheltered employment practices. 

● Integrate various federal programs focused on the employment and independent 

living of individuals with ID/DD into the newly-established Administration on 

Community Living within HHS in order to ensure a strong coordination of policies 

and resources.

Recommendations

As Congress continues to consider WIA reauthorization, NCD recommends:

• Multisystem collaboration: Identify and address pressure points in the 

implementation of vocational rehabilitation that prevent state VR agencies from 

collaborating with state education agencies (SEAs), Medicaid systems, ID/DD 

authorities, and local and state workforce investment boards toward a common 

goal of dramatically improving integrated employment outcomes for citizens with 

significant disabilities. 

• Presumption of eligibility: Modify current statutory language regarding 

presumption of eligibility to prevent state VR systems from deeming a person 

ineligible for employment services, including prevention of such determinations 

through the inappropriate use of assessment.
58

• Expansion of the assessment process: Expand the assessment process 

related to eligibility determination for VR services to allow a more customized 

approach to employment placement through a comprehensive, exploratory 

discovery process. Discovery is used as a guide for customizing an employment 

relationship for an applicant with an employer.15 This process takes into account 

all the applicant’s life experiences rather than single instances of performance. 

The discovery process begins with a provider representative who meets with the 

applicant and family at the home. These visits, along with other discovery 

activities, give the individual and the family, as appropriate, information about 

their powerful roles in the process and allow the provider to compile basic 

information that is necessary to begin the process.

A comprehensive profile is developed that describes the person in a narrative 

manner. For students, this document is a work in progress during the transition 

years of the school career; it is passed on from teacher to teacher until 

graduation. For adults, the profile provides information vital to planning and can 

be used instead of traditional, comparative vocational assessment procedures. 

• Time limits and structure of supported employment services (SES): 

Rebalance and increase VR funding to create more flexible, individualized, and 

realistic time limits on the provision of SES, allowing for sequencing and 

customization of services (episodic or continuous) to reflect the unique needs of 

the individual. This would include addressing challenges related to the current 

order of selection policies implemented by state VR agencies so the most 

vulnerable people are protected and have ongoing access to SES and 

customized employment strategies.

• Performance measurement and accountability: Create a tiered incentive 

system to credit VR systems for the successful placement of people with 

significant disabilities into integrated employment. Such a system would include 

the establishment of a “partial closure” to reflect that the person has been placed 
59

in a time-limited integrated employment setting and is receiving services aimed at 

preparing him or her to successfully pursue integrated, supported employment 

within a reasonable timeframe. Additionally, To encourage VR counselors to take 

on difficult cases, they would be credited for their involvement in successfully 

placing clients with the most significant disabilities in a way that adequately 

captures any additional time or work effort involved.

• Alignment of SES between VR and Medicaid-funded long-term services and 

supports (LTSS): Coordinate funding mechanisms and streamline SES 

processes with CMS and state ID/DD agencies.

• Ensure provision of VR services, including but not limited to SES, for those 

who actively pursue self-employment: Ensure that people who choose to 

pursue self-employment or entrepreneurship can access SES as needed to enter 

and sustain this self-determined, self-directed career path. Clarification in 

legislative language should affirm that such a path is considered a successful 

employment outcome.

2.3.3. Promoting Employment in the Context of Medicaid Reform

The crisis in Medicaid spending has sparked a national debate about whether the time 

has come to undertake a comprehensive reformation of the Medicaid system. A crossdisability dialogue with CMS and congressional leaders has led to several policy 

recommendations on reforming the focus of Medicaid supports for working-age 

beneficiaries with significant disabilities. 

Recommendations

With the aim of realigning Medicaid funding to foster increased community-based 

outcomes for citizens with ID/DD, NCD recommends that Congress and the 

Administration consider the following policy proposals endorsed in 2011 by 

13 national organizations: 16
60

• Promote Employment First principles through strong systems

coordination, aligned guidance, and consistent definitions and objectives 

related to the use of public funds.

Federal agencies mandated with providing employment supports should achieve 

consensus on a clear definition of “employment” to establish a baseline against 

which states can be measured. Clear guidance should be disseminated jointly by 

CMS, the Department of Justice, the Department of Labor, the Rehabilitation 

Services Administration (RSA), and SSA stating that publicly financed supports 

should prioritize areas essential to ensuring optimal independence through 

sustained integrated employment, economic advancement, and community 

living.

• Develop a model for the establishment of a national Medicaid buy-in 

program.

Congress should authorize and CMS should craft a model national Medicaid buyin (NMBI) program for all states, based on state initiatives that have been in 

existence since the 1990s. The NMBI would specify a minimum level of earnings 

and include asset-building provisions that each state could expand on. The 

model should include analysis of a shared responsibility for the state 

administration of the NMBI between county Medicaid offices and state or local 

One-Stop Career Centers and economic development departments. The buy-in 

program should focus on wraparound services not available through private 

insurance and on the full range of necessary individualized LTSS.

• Provide incentives for integrated employment through an enhanced FFP 

Rate.

CMS should establish an enhanced Federal Financial Participation (FFP) rate of 

90 percent for all Medicaid-funded employment preparation, placement, and job 

coaching costs incurred in states when consumers prepare for, enter, and remain 

in integrated employment. This could be funded by decreasing FFP rates for 
61

instructional and other large segregated/congregate home- and communitybased services (HCBS).

• Place time limits on HCBS funding for prevocational training and 

preparation services and placements in sheltered workshops.

Ample data supports the reality that the longer a person is out of the competitive 

workforce, the more difficult it is to return. Currently, thousands of American 

citizens are unnecessarily being placed in sheltered work environments when 

they are capable of much more than the system presumes. CMS should 

reevaluate the vetting process for establishing whether and when a person is 

placed in prevocational services to ensure that opportunities for employment 

supports leading to postsecondary education or integrated employment are fully 

exhausted first. NCD also recommends that prevocational training services in 

sheltered workshops be time-limited, to reflect a systemic focus on supporting 

people’s advance into integrated employment. 

• Work with SSA and other federal agencies to fund state-centric work 

incentives, technical assistance centers, and other collaborative strategies.

CMS and SSA should lead and fund competent entities that will implement and 

maintain real-time information services across program areas that support 

employment of people with significant disabilities. Informed decision making on 

employment, jobs, benefits, and building assets requires real-time, on-demand 

information services from public, private, and nonprofit sectors collaborating at 

the local, state, and national levels.

• Improve data collection systems across state programs.

CMS, SSA, RSA, and the Department of Labor should collaborate on data 

collection and analysis to better understand and evaluate how states are faring in 

addressing the needs and expectations of people with disabilities who work or 

plan to work and are receiving Medicaid supports. Resource realignment is best 

informed through common performance and outcome measures. 
62

• Promote promising evidence-based practices.

CMS should direct states to adopt promising practices that result in true 

integration as part of the infrastructural requirements to receive increased FFP 

rates through the Balancing Initiative and other incentive programs (such as 

Community First Choice), and should develop outcome and performance 

measures that meet the expectations of beneficiaries. Infrastructure and 

capacity-building should continue to be tied to supporting and improving 

employment outcomes at the individual level. 

• Improve evaluation and accountability of state Medicaid plans and waiver 

applications.

CMS, with assistance from ADD, should Increase its scrutiny of the evaluation, 

review, and approval of state Medicaid plans and Medicaid waiver applications, 

including applying aggressive scrutiny to evaluating reimbursement rates for 

various services to ensure that the rates are reasonable, cost-effective, and 

balanced among service options. These regulatory agencies can go only so far, 

however, in trying to influence the prioritization of services and supports that are 

home- and community-based. To really achieve the goal of sharply reducing the 

congregate, segregated, facility-based institutional bias of waiver funding 

requires statutory changes. Consumers and families should be encouraged to 

participate in the development and review of applications before they are 

submitted.

• Enforce state compliance with the Olmstead decision in relation to 

employment supports and residential services. 

CMS issued an Informational Bulletin on September 16, 2011, to state Medicaid 

programs that clarified the 2012 Home- and Community-Based Services Waiver

Technical Guide and included the following changes: it divides the definition of 

supported employment services to distinguish between individual and group 

SES; encourages the realignment of funds toward innovative, evidence-based 

practices, including customized employment strategies for people with ID/DD and 
63

other significant disabilities; and states that prevocational services should be 

time-limited and focused solely on preparing a person for the general workforce. 

These changes could have an enormous impact on prioritizing Medicaid waiver 

funds to focus more intently on the delivery of services aimed at achieving 

competitive, integrated employment for people with ID/DD. CMS, in collaboration 

with HHS’s Office for Civil Rights (OCR) and the Department of Justice, should 

direct CMS regional offices to actively promote integration and aggressively 

discourage states from implementing strategies that perpetuate segregation in 

work and housing.

• Use the Money Follows the Person (MFP) Balancing Initiative to expand the 

focus on integrated employment for citizens with ID/DD. 

CMS should continue to incentivize and direct states to merge their Medicaid 

Infrastructure Grant (MIG) infrastructure and capacity-building efforts with MFP 

initiatives to achieve targeted outcomes and performance measures in the areas 

of supported, integrated community living, and integrated employment. States 

may use MFP funds to provide employment supports, and CMS recently 

developed a tool to educate state Medicaid agencies on models for using MFP 

resources to increase their focus on integrated employment outcomes for people 

with ID/DD (see table 2). Congress should allow CMS to expand the eligibility 

criteria for MFP to include people who, without additional supports, would be at 

risk of institutionalization.
64

Table 2. Opportunities to Promote and Support Employment in MFP 

Through Policies and Services17

Resource/Policy

MFP 

Demonstration

Period

FMAP/MFP 

Support

Post-MFP 365-Day 

Demonstration Period

Employment 

specialists 

Infrastructure 100% 

administrative

Employment specialist as part 

of the administrative element 

of MFP infrastructure or state 

infrastructure using 

rebalancing resources.

MFP benefits 

counselors

Infrastructure 100% 

administrative

Evidence-based practice that 

supports employment; 

beneficiaries understand the 

impact of 

employment/earnings on 

benefits. 

Benefit 

counseling 

service

Supplemental 

service or HCB 

service 

State’s 

standard or 

enhanced 

FMAP

State not obligated to continue

but may be on HCBS plan of 

care.

Medicaid 

community 

programs 

(HCBSW, State 

Plan, 1915i, etc.)

How does financial 

eligibility in the 

state’s community 

program compare 

with financial 

eligibility for NF? 

State’s existing 

FMAP

MFP rebalancing resources to 

support increased access and 

capacity to HCB supports. Do 

the existing or new programs 

support the proposed groups 

with earnings? 

Supported 

employment

services

HCBS State’s 

enhanced 

FMAP

State not obligated to continue

but may be on HCBS plan of 

care.
65

Resource/Policy

MFP 

Demonstration

Period

FMAP/MFP 

Support

Post-MFP 365-Day 

Demonstration Period

Customized 

employment 

support services

HCBS State’s 

enhanced 

FMAP

State not obligated to continue 

but may be on HCBS plan of 

care.

Cash and 

counseling/

flexible budgeting

model 

Infrastructure 

building costs for 

states that do not 

currently have such 

a model 

100% 

administrative

Cash and counseling

infrastructure to prioritize MFP; 

over time it will become part of 

the state’s rebalancing system.

HCB services as 

part of the cash 

and counseling 

model

HCBS State’s 

enhanced 

FMAP

State not obligated to continue 

but may be on HCBS plan of 

care.

MFP=Money Follows the Person

FMAP=Federal Medical Assistance Percentage

HCBS=home-and community-based services

HCBSW=home-and community-based services waiver

NF=nursing facility

*Benefits counseling: If a state chooses an MFP benefits counseling option, costs 

associated with that model may not be combined with or duplicate any other federally 

funded program. 

**Cash and counseling/flexibility model: State planning would be necessary to develop 

the infrastructure to support the service delivery model, including how the employment 

specialists and cash and counseling/flexible budgeting model would eventually function 

within the state’s overall infrastructure as part of rebalancing activities.

Source: (2011). Shea, A. Disability & Elderly Health Programs Group, Centers for 

Medicare & Medicaid Services. 
66

2.4. Ongoing Supports Over the Lifespan

People with ID/DD should have access to opportunities and the necessary supports to 

participate in community life, have interdependent relationships, live in homes and 

communities of their choosing, and make contributions to their families, communities, 

states, and the nation. With education and support, communities can be accessible and 

responsive to the needs of people with ID/DD and their families, and are enriched by the 

full and active participation in and contributions of these people. Federal policy related 

to the provision of LTSS for citizens with ID/DD should be based on a holistic framework 

that customizes supports according to the individual needs of beneficiaries. The 

supports should be focused on helping the person achieve independence, economic 

advancement, optimal self-sufficiency, and full community participation. With regard to 

the DD Act, the focus of the DD network and other systems that provide ongoing 

supports to citizens with ID/DD should be framed in an updated, comprehensive model 

that emphasizes cohesiveness over the lifespan. Figure 5 shows the comprehensive 

supports required in the lifespan model, including health and wellness; housing; 

sustained education, training, and employment; transportation; asset development and

financial planning; and recreation.

The original NCD report, Rising Expectations, contained an in-depth exploration of the 

DD system’s capacity to provide ongoing supports. This supplement offers additional 

policy considerations related to Medicaid reform and the provision of LTSS for citizens 

with ID/DD. Additionally, the Collaboration to Promote Self-Determination convened 

several consumer and family-directed national disability organizations in 2010 to outline 

a set of values and guiding principles for framing the future provision of publicly

financed LTSS for citizens with ID/DD; these are summarized in table 3.

18 
67

Figure 5. Model: Comprehensive Supports Over the Lifespan

Source: Serena Lowe, President, AnereS Strategies, LLC. 
68

Table 3. Value Framework and Guiding Principles 

for the Provision of LTSS

Core Values Connecting, Guiding Principles

Equality

• Lack of personal control or 

autonomy, deprivation of human 

dignity, segregation, and abuse 

(including seclusion and restraint) 

should not be experienced by any 

population or tolerated by our 

society for any reason.

• Personal autonomy, access, accountability, and 

responsibility over one’s life decision-making 

processes, including control over publicly funded 

and personal resources required to support a 

person in his or her personal needs and pursuits, 

result in better outcomes (improved quality of life, 

for example).

Choice

• A fundamental part of providing 

supports is to discover and honor 

individual choice. Options that foster 

a “separate but equal” scenario or 

that promote exclusion from 

mainstream society are not options 

that foster true individual choice or 

empowerment.

• Publicly financed supports should eliminate 

institutional biases that perpetuate segregated 

outcomes, which limit the ability of people with 

disabilities to fully actualize or pursue their own 

goals and motivations, and restrict their 

opportunities. 

Competence

• Competence should be presumed 

in everyone, and public policy 

should have the highest 

expectations for both the system 

and individuals.

• Public systems that help people with disabilities 

maintain meaningful employment in an 

integrated setting, earn a sufficient income, 

generate assets, live independently, forge strong 

community relationships in inclusive settings, 

and attain optimal self-sufficiency will see a 

decreased reliance on public supports and 

financing over the long term.
69

Core Values Connecting, Guiding Principles

Community

• The provision of supports should be 

measured according to how nearly 

the life of a person with a disability 

is in the community to the lives of 

peers without disabilities.

• People with disabilities are chronically 

underrepresented in all aspects of society; as a 

result, their quality of life (in terms of employment, 

wealth, and health indicators) is significantly lower 

than that of any other subpopulation in the United 

States (stratified across race, age, and gender).

Home

• Everyone deserves a home, not a 

homelike setting.

• People with numerous social relationships have 

healthier outcomes and are less likely to be 

abused.

Work

• Working-age people with disabilities

should be supported to pursue a 

working lifestyle.

• Work should not be optional for people who are 

capable of working and rely on public assistance.

• It should be presumed in all facets of public 

support structures that people with disabilities 

want to work.

• A well-compensated and well-trained workforce is 

critical to providing supports.
70

Core Values Connecting, Guiding Principles

Dignity of Risk

• Future systems of supports and 

service delivery should break away 

from cyclical paternalism and 

instead promote and respect the 

dignity of risk.

• The nature of cognitive impairments associated 

with a DD/ID disability makes people living with 

DD/ID particularly vulnerable to the prejudices of 

external stakeholders and may affect the ability of 

these people to make informed choices based on 

personal desires as opposed to external 

influences and pressures. 

• Families (of biology or of choice) of adults living

with ID/DD are an important component in 

considering supports.

Equity

• All citizens with disabilities should 

receive public resources on the 

basis of the support they need to 

help them strive for and achieve 

personal objectives related to 

increasing their self-sufficiency, 

independence, and economic 

advancement.

• Systems should focus scarce resources on 

assisting people with significant disabilities by 

producing outcomes related to inclusive education,

integrated employment, and independent living in 

typical community settings.

Source: (2010). Collaboration to Promote Self-Determination.

http://thecpsd.org/about/value-frame-work/
71

2.4.1. Defining “Community” to Promote Inclusion and Full 

Participation

The Medicaid HCBS waiver program (also known as 1915(c) waivers) is one of the 

primary funding streams for long-term services and supports for citizens with ID/DD. 

Institutional settings have their own funding streams, and the misuse of HCBS waiver 

funds for institution-like settings in both residence and daily life restrict the choices 

available to individuals and families by forcing a choice heavily biased toward one or 

more institutional settings. 

HCBS waiver funds are limited and are designed to ensure that citizens with disabilities 

have the supports they need to live and work in integrated settings. In April 2011, CMS 

published a Notice of Proposed Rulemaking (CMS-2296-P) clarifying the types of 

settings for which Medicaid HCBS waiver funding could be used. The proposed 

regulation was intended to establish minimum standards to ensure that HBCS are 

delivered in integrated community settings and that waiver funds are not spent in 

settings that are congregate in nature or have the characteristics of an institution. 19 ADD 

has supported and should continue to support the efforts of CMS to move forward in 

implementing policy that will strengthen the integrity of the HCBS program by ensuring 

that funds are dedicated to getting people living, working, and fully participating in 

integrated settings.

The national self-advocacy movement has been particularly vocal about the importance 

of preserving HCBS waiver funding for community-based options. The 2011 report 

Keeping the Promise – Self-Advocates Defining the Meaning of Community20From the 

perspective of the national self-advocacy organizations that co-authored the publication 

(with ADD’s assistance), institutions are defined as those that— 

● Include only people with disabilities. 

● Include more than three people who have not chosen to live together. 
72

● Do not permit people to lock their bedroom or bathroom doors.

● Enforce regimented meal and sleep times. 

● Limit visitors, including who may visit and when they may do so. 

● Restrict when an individual may enter or exit the home. 

● Restrict people’s religious practices or beliefs. 

● Limit a person’s ability to select or remove support staff. 

● Restrict people’s sexual preferences or activity. 

● Require people to move if they want to make changes in the personnel providing 

their support or the nature of their support. 

● Restrict access to the telephone or the Internet.

● Restrict access to broader community life and activities.

Community settings are defined in the report as having, at a minimum, the following 

characteristics: 

● If people share a living arrangement, they have chosen to do so and chosen the 

people they will live with.

● Residents have lockable access to and egress from their own living area. 

● Access to the greater community is easily facilitated on the basis of the person’s 

preferences. 

● People have the right to hire and fire their own staff. 
73

● People may choose what, when, and where they eat, drink, and engage in social 

activities. 

● People have access to affordable, accessible transportation to participate in the 

broader community, including attendance at places of worship, volunteerism, 

social and civic engagement, and natural support networks.

The report states:

We lose an important aspect of community life if we spend our time only 

around people with disabilities, in day habilitation centers, and are not able 

to be included in our broader communities.... We must have opportunities 

to work in jobs as part of the general work force, among people who do 

not have disabilities. Opportunities for earning wages and benefits should 

be the same as those of everyone else. CMS funding should be used for 

supported employment and not be used for sheltered workshops or 

settings paying sub-minimum wage to people with disabilities. CMS 

community funding should not be used for any segregated settings, 

including day habilitation centers. Anything that segregates us from our 

communities is not community.21

The definition of community has important public policy implications for the delivery of 

long-term supports and services for people with ID/DD. CMS should clarify that HCBS 

funds may not be used for congregate care settings, except where small groups of 

people with disabilities choose to live together and where the setting does not have the 

qualities of an institution. The rule should prohibit states from using HCBS waiver funds 

to provide services to people who are living in a setting in which they are required to 

receive and participate in services as a condition of continued tenancy. CMS should 

review state applications to ensure that these standards are met. 
74

2.4.2. Realigning Public Resources to Prioritize Home and Community 

Based Services

Over the past several years, significant federal expenditures intended to help people with 

disabilities live and work independently in integrated community settings have achieved 

promising results. In 2009, federal and state investments in services for people with 

ID/DD totaled $53.21 billion; 75.5 percent ($40.2 billion) of these investments came from 

state and federal Medicaid contributions. Sixty-three percent of the funds came from 

HCBS waivers; 30 percent were dedicated to intermediate care facilities for people with 

intellectual disabilities; and 7 percent were directed toward other Medicaid-related 

services.22 However, despite the increased funding from HCBS waivers, many funds 

intended to help people with disabilities live, work, and engage in their communities 

continue to be misdirected to services that produce the opposite outcomes. As a result, 

thousands of people continue to receive services that are costly to the system, result in 

further segregation, impede individual progress, and create additional barriers to their 

successful participation in society at optimal levels of self-sufficiency. Table 4 shows the 

average cost per person according to the type of residential support received.

2.4.3. Transformational Change in the Context of Medicaid Reform

ADD has the opportunity to inform the ongoing work of CMS in defining and prioritizing 

waiver supports. The continued investment of federal funds in traditional, institutionally

biased, and segregated facility-based models of service delivery for working-age adults 

with disabilities—including nursing home care and group residential housing, sheltered 

workshops, prevocational services, day treatment, and day habilitation—must be 

reexamined to determine whether they are producing the outcomes that Congress, the 

Administration, and the U.S. Supreme Court intend. So far, 14 states have closed all 

institutions within their jurisdiction. 23 NCD held its 2011 Living Forum in Portland, 

Oregon, to highlight the state’s 20-year pathway to institutional closure. The forum 

identified three foundations for system change: (1) building values of community 
75

Table 4. Comparison of Costs of Institutional Versus

Community-Based Residential Services for

Working-Age Medicaid Beneficiaries with Significant Disabilities24

Type of Service Cost per Person People Served with $5M

ICF/ID $128,275 39 

HCBS Residential $70,133 71 

Host/Foster Family $44,122 113 

Own Family $25,072 200 

Source: Presented by NASDDDS Executive Director Nancy Thaler in July 2011 during 

an NCD-hosted Congressional Briefing on the state of long-term supports and services 

for individuals with ID/DD in honor of the 12th anniversary of the Olmstead decision. 

inclusion; (2) understanding influence and opportunities; and (3) developing long-term 

strategies for transitioning and sustaining people in community settings. 25

Federal spending and entitlement programs must be rebalanced and reinvested to 

create incentives for the use of evidence-based practices that result in living, working, 

and participating in the community as the norm, rather than the exception, for people

with significant disabilities. Building the capacity of people with significant disabilities to 

be self-sufficient, taxpaying citizens who can contribute to their communities must be 

the expected outcome of public investments if we are to create an affordable and 

sustainable system of supports.

Medicaid eligibility requirements should be crafted to promote work, family, and savings. 

Current eligibility criteria set unrealistically low income and asset limits and penalize 

people who are married, which does not reflect the common American values that 

people should be encouraged to work to their optimal potential, build savings for their 
76

future needs, and create and maintain strong familial structures. These issues arise not 

only in Medicaid but in other entitlement programs that people with disabilities rely on 

for survival, including Social Security, Temporary Assistance for Needy Families, and 

supplemental nutrition assistance programs. Until the eligibility structures of these 

programs are significantly overhauled and aligned, tremendous barriers will perpetuate 

cycles of poverty and dependence.

Data overwhelmingly demonstrates that where people live affects where they work, and 

where they work affects where they live. Medicaid reform must align public policy, 

regulations, incentives, and performance measurement, with the goal of helping people 

live, work, and participate in their communities. 

Recommendations

To fully realize the principles of the DD Act, NCD recommends that any Medicaid 

reform proposal should embody a central focus on system change that includes the 

following guiding principles: 

● An emphasis on person-centered practices in all Medicaid services and the 

provision of guidance and technical assistance to state Medicaid agencies and 

their state operational counterparts to help them adopt such practices. 

● A primary focus on Employment First and on using public funds to get people 

working and living in the community. 

● Stronger accountability through improved consumer-outcome-based 

performance measures for states administering the Medicaid program. 

● Criteria for state Medicaid plans to ensure compliance with Title II of ADA and the 

Olmstead decision: the “most integrated setting” in long-term services and 

support in living and day/employment supports. 
77

● An overhaul of current eligibility requirements related to asset and income limits, 

as well as criteria that create unfair barriers for married people.

● The use of Medicaid HCBS waivers or state plan services for the purchase of 

benefit planning services. 

● Better coordination within and among systems, linking objectives, investments, 

planning, and outcomes across systems (e.g., education, aging networks, 

vocational rehabilitation, and general workforce development). 

● Statutory authority and a stronger leadership role for CMS in establishing fee 

structures and reimbursement rates to ensure financial incentives that promote 

community-based outcomes, including the provision of individualized supports 

and natural supports. 

● Greater flexibility to states through the coordination and sharing of resources 

across systems by planning, braiding, and blending strategies for multiple 

funding streams. 

● Control, when desired, over planning processes, service options, and resources 

for and by individuals and families. 

● Significant transparency in the dissemination of information to individuals and 

families to ensure easier navigation through various systems and support options 

focused on promoting each person’s optimal independence and self-sufficiency. 

● Recognition that Medicaid services should increase individual self-sufficiency,

even though a majority of recipients will still require a certain level of long-term 

supports throughout the lifespan that are not available through private health 

insurance or the health exchanges to be established by 2014 under the 

Affordable Care Act. 
78

● A broader focus on the role of families and extended families as caregivers, 

when necessary and appropriate, to ensure that supports for caregivers are in 

place. 

● Attention to programs for dually eligible persons to ensure that working-age 

adults with disabilities continue to receive the supports necessary to sustain a 

fully integrated life in the community.

Again, ADD can play an important leadership role in establishing a framework of guiding 

principles for the upcoming Medicaid debate. For example, on September 12, 2011, 

CMS released guidance on the Balancing Incentive Initiative, authorized by Section 

10202 of the Affordable Care Act, which allows CMS to award additional federal funds 

to states to provide financial incentives to increase access to noninstitutionally based 

long-term services and supports (LTSS). ADD could have played an important role in 

the development of criteria for the Balancing Incentive Initiative, which provides an 

enhanced Federal Medical Assistance Percentage (FMAP) rate to states that focus 

more of their federal resources on home- and community-based options.26

In addition to key structural reforms that result in a greater emphasis on the prioritization 

of HCBS, states that want to take advantage of the enhanced FMAP rate must agree to 

two additional requirements. First, they must agree to provide services to eligible 

beneficiaries regardless of how people enter the program (i.e., no preference is allowed 

for a single point of entry). Second, states will no longer be allowed to enter into 

contracts with one entity to provide both case management and the services people 

with ID/DD can receive using waiver dollars.
79

SECTION 3. Conclusion: Transformation in the Midst 

of Fiscal Crisis

Given the current economic crisis, a transformation is required across systems of policy, 

practice, and funding toward a more progressive approach to serving people with the

greatest need; this approach must focus on promoting optimal self-sufficiency and 

independence. The public systems on which the majority of the ID/DD population relies

throughout their lifespan have not been significantly modernized since their inception 

more than 45 years ago. Thus, public policy remains entrenched in the 1960s-era all-ornothing approach to serving people with disabilities, in which a person must 

demonstrate inability to be productive to be deemed eligible for critically important 

supports. Federal policy and programs have not kept pace with evidence-based best 

practices or with the evolving desires of self-advocates and families. Existing systemic 

impediments must be addressed holistically and comprehensively to allow citizens with 

ID/DD to work, save, and financially contribute as taxpayers to society, and to ensure

that they also continue to receive the support necessary to thrive, enjoy optimal health, 

and become as independent as possible.

The current structure of publicly funded supports for citizens with ID/DD will continue to 

face scrutiny in the years to come; this structure should be carefully modernized in a 

way that helps people reach their optimal levels of self-sufficiency while acknowledging 

that many of them will require some level of supports throughout their lifespan. 

We must identify and eliminate the systemic impediments in our current public 

infrastructure that discourage and even prevent citizens with ID/DD from enjoying the 

same opportunities as those without disabilities to go to school, work, earn a livable 

wage, live independently, and engage meaningfully in their communities. Promoting 

citizenship and self-sufficiency is at the core of our nation’s social fabric, and federal 

policies or systems that perpetuate the discrimination, segregation, or diminution of 

citizens with ID/DD are financially unsustainable and morally contradictory to the rights 
80

outlined in the DD Act and the ADA. Various pockets of the country have made 

progress in moving beyond the old models of segregation and cyclical dependency 

toward optimal self-sufficiency and advancement of citizens with ID/DD. This progress 

must be brought to a national scale.

The aims of the DD Act can be fully realized only if the Federal Government makes a 

firm commitment to realigning public policy, funding streams, and goals across federal 

systems to focus on achieving the highest expectations of and for citizens with ID/DD.
81

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85

Endnotes

1 National Council on Disability, Rising Expectations: The DD Act Revisited, 2011 

(http://www.ncd.gov/publications/2011/Feb142011).

2 Developmental Disabilities Assistance and Bill of Rights Act of 1963 (reauthorized as 

P.L. 106-402). http://www.mnddc.org/dd_act/documents/63-MHH-CIF.pdf

3 Most community-based participatory research (CBPR) projects involve local 

communities defined by race, ethnicity, geography, or occupation. Autistic selfadvocates, a geographically dispersed community defined by disability, face issues in 

research similar to those experienced by more traditional minorities. Nicolaidis et al. 

sought to build an academic-community partnership that uses CBPR to improve the 

lives of people on the autistic spectrum. Through the Academic Autistic Spectrum 

Partnership in Research and Education (AASPIRE), the research team conducted 

several studies on the health care experiences and well-being of autistic adults. They 

identified a number of strategies that integrate technology and process to successfully 

equalize power and accommodate diverse communication and collaboration needs. 

Nicolaidis et al. concluded that CBPR can be conducted successfully with autistic selfadvocates. http://aaspire.org/?p=publications

4 National Early Childhood Technical Assistance Center, “Annual Appropriations and 

Number of Children Served Under Part C of IDEA,” 2011 (http://www.nectac.org/partc/

partcdata.asp); M. Greer, A. Taylor, and S. D. Mackey Andrews, FPG Child 

Development Institute, National Early Childhood Technical Assistance Center

(NECTAC), University of North Carolina, A Framework for Developing and Sustaining a 

Part C Finance System, NECTAC Note No.23, 2007. This paper is based on a 

presentation of the same name given at the November 2003 Office of Special Education 

Programs National Early Childhood Conference in Washington, DC 

(http://www.nectac.org/~pdfs/pubs/nnotes23.pdf). 

5 Ibid. NECTAC, funded through the Department of Education’s Office of Special 

Education Programs (OSEP), has prepared a chart that outlines federal appropriations 

compared with number of children served from FY1987 through FY2011

(http://www.nectac.org/partc/partcdata.asp). The chart shows that while the number of 

children deemed eligible for Part C early intervention services grew from 274,747 in 

FY2004 to 342,821 in FY2011, the annual federal appropriations for Part C services 

declined from $444.4 million in FY2005 to $438.5 million in FY2011. 

6 Data obtained from the Centers for Disease Control, 2011 (www.cdc.gov). 

7 The information was summarized in an executive summary developed by the National 

Association of State Directors of Special Education, the entity responsible for organizing 

the OSEP meeting on the State Performance Plan/Annual Performance Report process 

within IDEA accountability system during the summer of 2011 (Alexandria, VA, May 11–
86

13, 2011). http://www.nasdse.org/LinkClick.aspx?fileticket=WmUtXZY4EhE%

3D&tabid=36

8 Data confirmed through Eric Buehlmann, Deputy Executive Director for Public Policy, 

National Disability Rights Network (correspondence dated September 8, 2011).

9 Reprinted from Think College: A Snapshot of Postsecondary Education for Students 

with Intellectual Disabilities across the United States. Think College Fast Facts, Issue 

No. 2. Boston, MA: Institute for Community Inclusion, University of Massachusetts 

Boston. (2010). http://www.thinkcollege.net/images/stories/FF2_F.pdf

10 Alberto Migliore, John Butterworth, and Debra Hart, Postsecondary Education and 

Employment Outcomes for Youth with Intellectual Disabilities, Think College Fast Facts, 

Issue No. 1, Institute for Community Inclusion, University of Massachusetts, Boston, 2009. 

This publication was supported by a grant from the National Institute on Disability and 

Rehabilitation Research (NIDRR). Grantees are encouraged to freely express their findings 

and conclusions; therefore, points of view or opinions do not necessarily represent official 

NIDRR policy. http://www.communityinclusion.org/article.php?article_id=267

11 Data shared by NASDDDS Executive Director Nancy Thaler in July 2011 during an 

NCD-hosted congressional briefing on the state of long-term supports and services for 

people with ID/DD in honor of the 12th anniversary of the Olmstead decision. Data 

originated from J. Butterworth, A. Cohen Hall, F. A. Smith, A. Migliore, and J. A. Winsor, 

The National Report on Employment Services and Outcomes, Institute for Community 

Inclusion, University of Massachusetts, Boston, 2011, p 19. 

http://www.communityinclusion.org/pdf/statedata2010_finaldraft.pdf

12 Bill Kiernan, director of the Institute for Community Inclusion (UCI) at the University of 

Massachusetts, and Chas Moseley, deputy executive director of the National 

Association of State Directors of Developmental Disabilities Services (NASDDDS), 

developed a policy paper on Employment First strategies and experiences of states that 

participated in the State Employment Leadership Network (SELN) in 2009. SELN is a 

national collaborative of ICI and NASDDDS to provide technical assistance to states, 

focusing on systems change to improve employment outcomes of citizens with ID/DD. 

In 2001, 26 states were members of SELN. More information can be found at 

www.seln.org. 

13 Kiernan and Moseley, Employment First policy paper, 2009.

14 For more information on the ADD’s Partnerships in Employment Systems Change 

grants, go to http://www.acf.hhs.gov/programs/add/grantsandfunding.html. 

15 The Department of Labor’s Office on Disability Employment Policy (ODEP) has developed a 

series of educational materials and toolkits for practitioners on customized employment 

strategies and approaching the process of discovery. For additional information, go to 

http://www.dol.gov/odep/categories/workforce/CustomizedEmployment/deliverables/index.htm. 
87

16 Policy brief, Taking a Hard Look at Medicaid and the Economic Well-Being of 

Americans with Disabilities: Recommendations to Reform and Improve Economic 

Outcomes for Citizens with Disabilities, 2011. The following national organizations 

endorsed the recommendations outlined in the policy brief: American Association of 

People with Disabilities; APSE; Autistic Self-Advocacy Network; Autism Society of 

America; Center for Self-Determination; National Association of State Directors of 

Developmental Disabilities Services; National Council on Independent Living; National 

Disability Institute; National Down Syndrome Congress; National Down Syndrome 

Society; National Organization of Nurses with Disabilities; TASH; World Institute on 

Disability. The policy brief can be downloaded at http://TheCPSD.org.

17 Developed by Annette Shea, Money Follows the Person (MFP) project officer, 

Disabled and Elderly Health Programs Group, Division of Community Systems 

Transformation, CMS, in February 2011 and disseminated to state Medicaid 

Infrastructure Grant (MIG) and MFP directors at the MIG conference in May 2011 as a 

tool to help state MFP programs think about how to use MFP funds to provide

integrated employment supports for citizens with ID/DD.

18 The Collaboration to Promote Self Determination is a network of national disability 

organizations created in 2007 that advocates for high-impact public policy reform aimed 

at optimizing the economic advancement of citizens with ID/DD (http://TheCPSD.org). 

19 “Medicaid Program: Home- and Community-Based Services (HCBS) Waiver, Notice 

of Proposed Rulemaking,” 76 Federal Register 73 (April 15, 2011, p. 21311). This CMS 

notice (CMS-2296-P) clarified the kinds of settings for which HCBS waiver funding could 

be used. The proposed regulation stated that an HCBS setting “must be integrated in 

the community; must not be located in a building that is also a publicly or privately 

operated facility that provides institutional treatment or custodial care; must not be 

located in a building on the grounds of, or immediately adjacent to, a public institution; 

or, must not be a housing complex designed expressly around an individual’s diagnosis 

or disability, as determined by the Secretary...[and] must not have qualities of an 

institution, as determined by the Secretary. Such qualities may include regimented meal 

and sleep times, limitations on visitors, lack of privacy and other attributes that limit 

individual’s ability to engage freely in the community.” http://www.gpo.gov/fdsys/pkg/FR2011-04-15/pdf/2011-9116.pdf

20 Autistic Self-Advocacy Network, Self-Advocates Becoming Empowered, and National 

Youth Leadership Network, Keeping the Promise—Self-Advocates Defining the 

Meaning of Community Living, (May, 2011) www.acf.hhs.gov/programs/add/adddocs/

KeepingthePromiseofCommunitySABEFinalApproved.pdf

21 Ibid. 

22 Braddock et al, Coleman Institute and Department of Psychiatry, University of 

Colorado, 2011. Data from the 2010 State of the States in Developmental Disabilities, a 

national data collection initiative managed by the Coleman Institute and funded by ADD 

and NIDRR. http://sos.arielmis.net/index.php/publications/books
88

23 To date, the following states have closed all intermediate care facilities for the 

mentally retarded: District of Columbia (1991), New Hampshire (1991), Vermont (1993), 

Rhode Island (1994), Alaska (1997), New Mexico (1997), West Virginia (1998), Hawaii 

(1999), Maine (1999), Minnesota (2000), Indiana (2007), Michigan (2009), Oregon 

(2009), and Alabama (2012).

24 Presented by N. Thaler at NCD Congressional briefing, 2011. 

25 For a summary of the 2011 Living Forum hosted by NCD in Portland, Oregon, May 6–

7, 2011, http://www.ncd.gov/events/RegionalForums/Living_Forums_. 

26 On September 12, 2011, CMS released guidance on the Balancing Incentive 

Program: https://www.cms.gov/CMCSBulletins/downloads/cib-9-20-11.pdf. Total funding 

is not to exceed $3 billion in federal matching payments. Once CMS approves a state’s 

application, the funding is available beginning October 1, 2011, and ending September 

30, 2015, or whenever the $3 billion has been expended. Effective October 1, 2011, the 

Balancing Incentive Initiative began offering a targeted increase in the FMAP to states 

that undertake certain structural reforms to increase access to noninstitutional 

LTSS. The increased matching payments are tied to the percentage of a state’s 

noninstitutional LTSS spending, with lower FMAP increases going to states that need to 

make fewer reforms. States in which 25–50 percent of total expenditures for LTSS are 

directed toward noninstitutionally based supports are eligible for a 2 percent enhanced 

FMAP. States in which less than 25 percent of total expenditures for Medicaid LTSS are 

for noninstitutionally based LTSS are eligible for a 5 percent enhancement.