STATEMENT OF

SHARON LEWIS 

COMMISSIONER

ADMINISTRATION ON DEVELOPMENTAL DISABILITIES 

ADMINISTRATION FOR CHILDREN AND FAMILIES 

DEPARTMENT OF HEALTH AND HUMAN SERVICES

BEFORE THE

COMMITTEE ON HEALTH, EDUCATION, LABOR AND PENSIONS 

UNITED STATES SENATE

MARCH 2, 2011
2

Chairman Harkin, Ranking Member Enzi and distinguished Members of the 

Committee, thank you for the opportunity to testify today. I am honored to be here 

representing the Administration on Developmental Disabilities (ADD) within the 

Administration for Children and Families (ACF) at the U.S. Department of Health and 

Human Services (HHS), to share some successful strategies to achieve integrated 

employment of people with intellectual and developmental disabilities.

The purpose of the Developmental Disabilities Assistance and Bill of Rights Act 

of 2000 (DD Act) is “to assure that individuals with developmental disabilities and their 

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

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

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

through culturally competent programs...” (42 USC 15001). The Administration on 

Developmental Disabilities works with our partners in every state to achieve the goals 

embodied in the Act. The ADD network consists of three programs that operate in each 

state and territory -- State Developmental Disabilities Councils (DD Councils), 

University Centers for Excellence in Developmental Disabilities (UCEDD), and 

Protection and Advocacy Systems (P&As). ADD also implements the Projects of 

National Significance (PNS) which are designed to support the ADD network through 

data and research projects as well as fund innovative approaches to improving outcomes

for those with developmental disabilities. Approximately two-thirds of the ADD network 

entities report active engagement related to improving employment outcomes for people 

with developmental disabilities, through a broad range of activities including direct 

support for individuals with disabilities seeking employment, development of state and 

local policies and practices, protection of employment rights, data collection and analysis, 

and training initiatives.

At the Department of Health and Human Services, Secretary Sebelius is fully 

committed to finding solutions that address barriers to community living for individuals 

with disabilities that give people more control over their lives and the supports they 

need. Employment is a critical component of community living for most adults, 

including people with intellectual and developmental disabilities. Work is not only the 
3

means to economic self-sufficiency, it also is an important way for individuals to 

contribute to their communities, build a network of social relationships, and create 

opportunities for lifelong learning.

To illustrate, I would like to tell you about a remarkable young man, Patrick, from 

Wisconsin. Like many young people, Patrick got his first job at 16. Patrick’s first job 

came the same way most of us get a job: a great work ethic, dedication, a terrific attitude, 

and a social network derived from community involvement.

Patrick met his boss, Todd, at a retreat where Todd had the opportunity to see 

first-hand Patrick’s work ethic, attention to detail, and generous spirit. At the end of the 

retreat, Todd told Patrick’s dad, Brian, that he would like Patrick to apply for a job at his 

packaging business in Menomonee Falls, Wisconsin. 

As a high school sophomore, Patrick started working 3-hour shifts, three days a 

week after school. His starting pay was $8.50 in 2005. Five years later, Patrick is 

considered the star of his unit. He assembles boxes, and can work about twice as fast as 

the average box assembler – he holds the assembly record. This has increased the overall 

productivity of Todd’s organization. Patrick is able to work in different parts of the 

organization, filling in when another area is short-staffed – doing marketing and label 

packaging, for example. He gets regular raises and shares in all the company perks. 

This is a success story of a typical young man, starting his career and through his 

hard work and dedication achieving great success. Why is this story significant? Patrick 

is a young adult with Down syndrome who is working in integrated employment, earning 

a competitive wage and benefits. Only a small minority of young adults with intellectual 

and developmental disabilities are employed in such settings. In one current study of 338 

recent high school graduates with intellectual and developmental disabilities, only 14.2 

percent were employed in individual positions paying at least minimum wage.

1

1 Simonsen, M. (2010). Predictors of supported employment for transitioning youth with developmental 

disabilities (Unpublished doctoral dissertation). University of Maryland: College Park, Maryland. 
4

Patrick’s success can be attributed to several factors, as described by the 

Wisconsin Medicaid Infrastructure Grant project at the University of Wisconsin’s 

Waisman Center:

2

2 Swedeen, Beth, et al (2009). On the Job: Stories from Youth With Disabilities. Natural Supports 

Project, University Center for Excellence in Developmental Disabilities, Waisman Center, University of 

Wisconsin, Madison.

• High expectations and supportive family. Patrick always has been treated the 

same as his siblings and his peers, with high expectations at home, in school and 

at work. Additionally, Patrick’s family received support to participate in 

leadership development through Wisconsin’s Waisman Center (a UCEDD) and

the Wisconsin DD Council, which helped his family understand the importance of 

self-determination. 

• Hard work and preparation. Patrick knows he has to work to achieve. He has 

been active in sports, volunteers on a regular basis, and has a second degree Black 

Belt in Tae Kwan Do. He has taken on additional responsibilities at work over 

time, and has been rewarded.

• Person-centered thinking and self-determination. Throughout Patrick's 

school-to-work transition process, Patrick and his team made decisions based 

upon his desires, strengths, and choices. Patrick and his family used personcentered planning to ensure the availability of natural and paid supports necessary 

for a quality life for Patrick.

• Community involvement. Patrick has been involved in sports, the community, 

and his church, which helped him develop the social capital that led to the job and 

provided ongoing natural supports. 

• Welcoming employer. The company worked with Patrick to get his 

Occupational Safety and Health required training, accommodating Patrick with 

experiential learning rather than handing him a manual. Patrick has co-workers 

he can turn to for questions and support. 

• Flexible supports. The school system and vocational rehabilitation (VR) system 

offered flexibility in supporting Patrick to pursue his goals, and Patrick depends 

upon Medicaid for healthcare and occasional personal support. For example, the 
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school partnered with the state VR agency to provide a job coach for the first few 

weeks of Patrick’s job, and the school offered a flexible schedule to allow Patrick 

to balance work and continued learning. 

• Starting early. Patrick started working during his sophomore year. When he 

finished the high school curriculum at the end of his senior year, he left the high 

school environment, increasing his time at work while continuing reading and 

math instruction through a tutor. Patrick focused on living and working in the 

community starting at age 18; he did not wait until he aged out of school-based 

services. This is consistent with data that indicates that individuals with 

intellectual and developmental disabilities (ID/DD) who participate in work-based 

experiences during high school are more likely to find success in competitive, 

integrated employment.

While Patrick has found great success in his job, unfortunately many Americans 

with disabilities, especially people with ID/DD, are struggling to access employment 

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

the proportion of the population of people with disabilities who are employed is estimated 

to be 17 percent, compared to 63 percent for people without disabilities. And, for 

individuals with intellectual and developmental disabilities, the likelihood of participating 

in integrated employment is even lower, with state ID/DD agencies reporting that only 22 

percent of the number of individuals served by these agencies participating in integrated 

employment.4

3 

3 U.S. Bureau of Labor Statistics Economic News Release February 4, 2011 Table A-6. Employment status 

of the civilian population by sex, age, and disability status, not seasonally adjusted. Accessed February 24, 

2011: http://www.bls.gov/news.release/empsit.t06.htm 4 Butterworth et al (2010). StateData: The National Report on Employment Services and Outcomes, 2009. 

Boston, MA: Institute for Community Inclusion ID/DD Agency National Survey of Day and Employment 

Programs for People with Developmental Disabilities, p. 49. 

Among the strongest predictors of post-school employment success for young 

adults with disabilities is whether or not they held one or more paid jobs during high 

school. The importance of community-based vocational evaluation, job training, and 5 

5 Test, D. W., Mazzotti, V. L., Mustian, A. L., Fowler, C. H., Kortering, L, & Kohler, P. (2009). EvidenceBased Secondary Transition Predictors for Improving Postschool Outcomes for Students with Disabilities. 

Career Development for Exceptional Individuals, 32, 160-181.
6

paid employment opportunities while still in high school have been well documented in 

achieving positive post-school outcomes. Getting that first job can make a significant 

difference for students with intellectual and developmental disabilities, just as it did for 

Patrick.

6 

6 Flexer, R., Simmons, T., Luft. P., & Baer, R. (2008). Transition Planning for Secondary Students with

Disabilities (3rd ed.). Upper Saddle River, NJ: Merrill/Prentice Hall.

The Role of Education

As is true for the general population, education is a key determinant in 

employment success for students with intellectual and developmental disabilities. 

Currently there are approximately one million American students with disabilities age 3- 

21 eligible for services under the Individuals with Disabilities Education Act (IDEA) 

categories of intellectual disability, multiple disabilities, autism, traumatic brain injury, 

and developmental delay. 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 diploma during the 2007-2008 school year.

Among all students, those with the most significant cognitive disabilities are the least 

likely to graduate with a regular high school diploma. And, even with a diploma, youth 

with intellectual disabilities demonstrate the lowest rate of paid employment among 

students with disabilities (29.8 percent), one to four years after exiting high school.10

9 

8

7 

7 U.S. Department of Education, (2010). Individuals with Disabilities Education Act Data – Data

Accountability Center. Number of children and students served under IDEA, Part B, in the U.S. and 

outlying areas by age group, year, and disability category, 2008. Table 1-11. 8 U.S. Department of Education, (2010). Individuals with Disabilities Education Act Data – Data

Accountability Center, Exiting Children and students served under IDEA, Part B, in the U.S. and outlying 

areas by age group, year and disability category, 2008. Table 4-2. 9 Wagner, M., Newman, L., Cameto, R., Levine, P, and Garza, N. (2006). An overview of findings from 

Wave 2 of the National Longitudinal Transition Study-2 (NLTS2). Menlo Park, CA: SRI International.

10 Newman, L., Wagner, M., Cameto, R., Knokey, A.M., & Shaver, D. (2010). Comparisons Across Time

of the Outcomes of Youth With Disabilities up to 4 Years After High School . A Report of Findings from the 

National Longitudinal Transition Study-2 (NLTS2). Page 37. Menlo Park, CA: SRI International. Available 

at www.nlts2.org/reports/2010_09/nlts2_report_2010_09_complete.pdf. 

As states define, and re-define college and career-ready standards and develop 

supporting initiatives to help students achieve these standards, questions have arisen 
7

about the applicability of such standards for students with intellectual disabilities,

especially students with significant cognitive disabilities. Current data from states 

indicate that many of these students are leaving high school unable to read beyond sight 

words or do math beyond basic functions using a calculator.

11

Low expectations continue

to be one of the biggest barriers to success for these students. Yet maintaining high 

expectations for these students is critical to their success in life and in work; research has 

also shown that participation in standards-based assessments has made a tremendous 

positive difference in achievement for students with significant cognitive disabilities.

14

13 

12 

11 Samuels, Christina, (2010) Standards' Impact for Special Ed. is Weighed, Edweek,. Quenemoen, R., 

Kearns, J., Quenemoen, M., Flowers, C., & Kleinert, H. (2010). Common Misperceptions and ResearchBased Recommendations for Alternate Assessment Based on Alternate Achievement Standards (Synthesis 

Report 73). Minneapolis, MN: University of Minnesota, National Center on Educational Outcomes.

12 Kearns, J., Towles-Reeves, E., Kleinert, H., Kleinert, J., & Thomas, M. (in press). Characteristics of and 

implications for students participating in alternate assessments based on alternate academic achievement

standards. Journal of Special Education.

13 McGrew, K. S., & Evans, J. (2004). Expectations for Students with Cognitive Disabilities: Is the Cup

Half Empty or Half Ffull? Can the Cup Flow Over? (Synthesis Report 55). Minneapolis, MN: University 

of Minnesota, National Center on Educational Outcomes.

14 Ysseldyke, J., Dennison, A., & Nelson, R. (2004).Large-scale Assessment and Accountability Systems:

Positive Consequences for Students with Disabilities (Synthesis Report 51). Minneapolis: University of

Minnesota, NationalCenter on Educational Outcomes.

Despite these performance statistics and the cultural challenges of low 

expectations, students with intellectual disabilities can -- and do -- go on to succeed in 

post-secondary education and in employment. There are approximately 6,000 students 

with intellectual disabilities currently attending college, an experience which can make a 

tremendous difference in gaining employment. One recent study of vocational 

rehabilitation outcomes showed that youth with intellectual disabilities who participated 

in postsecondary education were 26 percent more likely than students with no 

postsecondary education experience to leave vocational rehabilitation services with a paid 

job and earn a 73 percent higher weekly income.15

15 Alberto Migliore, John Butterworth, and Debra Hart, (2009) Postsecondary Education and Employment

Outcomes for Youth with Intellectual Disabilities.

In order to provide more students the opportunity to attend quality college 

programs that support students with intellectual disabilities to participate in 

comprehensive, inclusive educational experiences integrated into institutions of higher 

education across the country, the Administration on Developmental Disabilities is
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investing $4 million over five years in the Consortium to Enhance Postsecondary 

Education for Individuals with Developmental Disabilities project. The Consortium is 

providing training and technical assistance to institutions of higher education, conducting 

research, and disseminating information on promising practices that support individuals 

with intellectual disabilities to access postsecondary education, resulting in improved 

long-term independent living and employment outcomes. The primary activities of the 

project include: 

• Research and planning to develop and validate promising practices in 

postsecondary programs for students with intellectual disabilities including 

development of standards, quality indicators, and performance benchmarks.

• Development and testing of a national training program for colleges and 

universities that supports replication of promising practices and addresses 

gaps in information for institutions of higher education that are developing or 

expanding programs for students with intellectual disabilities. This includes 

the “Think College” website and online, self-paced coursework for higher 

education professionals on effective practices for this population. 

• Assisting institutions of higher education to implement quality programs and 

establish partnerships that will help them transition to sustainable models 

beyond start-up funding periods, as well partnering with national 

organizations for large-scale dissemination of training programs.

During the past eight years, the number of college programs available for students 

with intellectual disabilities has grown from four to over two hundred fifty, spread over 

36 states and two Canadian provinces. The Consortium has been a vital resource to

these institutions of higher education, providing training and technical assistance to 

programs at all stages, researching and disseminating information on promising practices, 

and supporting the establishment of many of these new programs.

16 

16 Grigal, M., Hart, D., & Migliore, A. (2010, October). Think College: An Overview of National Research. 

Plenary Session, State of the Art Conference, George Mason University, Fairfax, VA.
9

Integrated Employment Supports and Services

Recently ADD held a series of listening sessions and stakeholder meetings across 

the country, asking the community to provide input about priorities and concerns. 

Approximately 650 individuals participated in-person in these meetings, including people 

with disabilities, family members, professionals and support staff as well as 

representatives from multiple federal agencies. Among the major issues identified by the 

community, access to integrated employment for people with intellectual and 

developmental disabilities was repeatedly cited as a top concern and was recommended

as a critical priority for ADD and the ADD network to address. In particular, 

stakeholders identified the establishment of “Employment First” policy and strategies 

across various programs as one of five top goals that should be pursued. 

Much of the ADD network already is working hard to improve integrated 

community-based employment opportunities at competitive wages for people with 

intellectual and developmental disabilities, with 39 P&As, 39 DD Councils and 36 

UCEDDs reporting active engagement in employment activities, such as: 

• In eleven states, DD Councils and/or UCEDDs (CA, HI, IA, IN, MD, NM, 

NC, NV, OR, PA, VT) are actively collaborating with the ID/DD state agency 

to develop and improve job access and retention. For example, in Iowa, the 

UCEDD assisted the Department of Human Services to update its Olmstead 

Plan that includes competitive employment as a "Strategic Priority." The 

action steps include working in collaboration with the national State 

Employment Leadership Network (SELN) and state agency partners 

(including the Iowa DD Council, Department of Education, Iowa Division of 

Vocational Rehabilitation Services (DVR), Workforce Development, 

Department for the Blind, Department of Human Rights) to develop and 

implement a statewide competitive employment plan that makes employment 

in the general workforce the first priority and expected and preferred outcome 

in the provision of publicly funded services. In Oregon, the DD Council 

convened a workgroup that developed the Employment First Policy which

was then adopted by the state DD agency and is being implemented 

collaboratively with VR.
10

• Through a Medicaid Infrastructure grant provided by the Centers for Medicare 

and Medicaid Services, the Wyoming Employment Systems Development 

Project at the UCEDD brought together the various state agencies, disability 

groups and business organizations to determine the most effective means of 

permitting people with disabilities to retain their health care benefits after 

obtaining employment, working to expand personal assistance services

outside the home for Medicaid recipients seeking employment, and integrating 

the various service systems into a single, one-stop source of delivery with a 

community focus. 

• Project SEARCH is a nationally recognized education, training and internship 

program leading to integrated competitive employment for students with 

significant disabilities. Currently seven DD Councils (AZ, CO, FL, GA, NY, 

OH, OK) and three UCEDDs (AZ, IN, NY) are supporting Project SEARCH. 

In addition, ADD and ACF are hosting DC-area Project SEARCH interns in 

our offices this school year. 

• The Alaska DD Council implemented the StartUp Alaska Initiative to increase 

the self-employment of Alaskans with disabilities. As a result, 71 individuals 

were served and 33 launched their own businesses. Even more importantly, 

several entities, including the Division of Vocational Rehabilitation, the 

Employment Security Division, the Alaska Mental Health Trust Authority, the 

Center for Human Development and the Center for Economic Development at 

the University of Alaska Anchorage, and the University Small Business 

Development Centers are implementing policy to sustain best practices 

identified through the grant. 

• Vanderbilt University’s “Project Opportunity” provides educational, 

developmental and employment opportunities within Vanderbilt University to 

students with disabilities. Twenty-one of twenty-eight students have achieved 

competitive employment at the University upon completion. The Project also 

collaborated with The Arc of Davidson County, the Walmart Foundation and 

Metro Nashville Public Schools to use the Project Opportunity model to 

develop a classroom housed within the municipal government which then 
11

became a model for the city of Nashville being implemented by Mayor Karl

Dean.

• UCEDDs and/or DD Councils in twelve states (AL, CA, GA, IA, KS, MD, 

MO, NE, NV, OR, SC, UT) are working with state ID/DD agencies to 

establish “employment first” as a guiding principle in policy and systems 

change. Employment first is an approach that is underway in many states that 

focuses upon integrated, community-based employment as the first option and 

priority goal for individuals with intellectual and other developmental 

disabilities. States that have adopted this approach ensure that vocational 

rehabilitation, home and community-based service providers and educational 

service systems work together in developing strategies across programs so that 

individuals with intellectual and developmental disabilities are supported to 

access integrated, community-based employment opportunities. 

Approaches to supporting access to integrated employment for people with 

intellectual and developmental disabilities vary tremendously across states. According to 

The National Report on Employment Services and Outcomes 2009 published by the 

Institute for Community Inclusion at University of Massachusetts Boston, the most 

important factors that influence integrated employment include:17

17 Butterworth et al (2010). StateData: The National Report on Employment Services and Outcomes, 2009. 

Boston, MA: Institute for Community Inclusion p. 12. 

• Approach of the state agencies directing Medicaid services for people with

ID/DD: Medicaid is both a primary source for health care for individuals with 

ID/DD and the largest federal source of funding for home and community-based 

services. State ID/DD agencies are playing a critical role in determining the 

direction of the state and federal Medicaid investment. In states that have started 

to address the need for competitive, integrated employment opportunities for 

people with intellectual and developmental disabilities, successful strategies 

include flexibility in funding, data collection focused upon integrated 

employment, rewards and incentives, and innovative practices and training. For 

example, in Oklahoma, an innovative outcome-based funding approach pays for 

18 

18 Ibid, p. 11 
12

services based upon the number of hours an individual works, not the number of 

service hours provided. In several localities in Michigan and other states, agencies 

have established rate structures that incent integrated employment outcomes.

• Approach of the Community Rehabilitation Providers (CRPs): As the 

primary source of day and employment services for people with intellectual and 

developmental disabilities, CRPs play a critical role in providing work 

opportunities. Currently, only twenty-six percent of individuals served by CRPs 

are working in integrated employment.

• Collaboration with State Vocational Rehabilitation (VR) agencies: 

Collaborative initiatives between VR and ID/DD agencies are an important 

element in supporting stronger employment outcomes.

• Community-based non-work (CBNW) activities: Participation in communitybased non-work activities supported by home and community-based waivers and 

state funds – defined as activities that take place in the community and do not 

involve paid employment – has rapidly grown over the past 15 years, as reported 

by state ID/DD agencies. Thirty-eight state ID/DD agencies that reported 

CBNW services indicated that that 36.2 percent of those served participated in 

CBNW activities in fiscal year 2008, up from 18.7 percent in fiscal year 1999. 

19 

19 Butterworth et al (2010). StateData: The National Report on Employment Services and Outcomes,

2009. Boston, MA: Institute for Community Inclusion p. 21.

• Direct Support Personnel (DSPs): Competent support staff often play a key 

role in the success of people with intellectual and developmental disabilities on 

the job. 

• Individual and family factors: Research has shown that many individuals with 

disabilities and their families want to consider community options, but have 

concerns about long-term placement and stability, safety, and the social 

environment.20

20 Migliore, A., Grossi, T., Mank, D., Rogan, P. (2008) Why do Adults with Intellectual Disabilities Work in

ShelteredWorkshops? Journal of Vocational Rehabilitation, 28(1), 29-40. 

.Migliore, A., Mank, D., Grossi, T., & Rogan, P. (2007). Integrated Employment or Sheltered Workshops: 

Preferences of Adults with Intellectual Disabilities, their Families, and Staff. Journal of Vocational 

Rehabilitation, 26(1), 5-19. 
13

For people with intellectual and developmental disabilities, self-determination is 

another important factor in employment outcomes. Individuals with ID/DD who have the 

degree of control they desire over their lives consistent with their capacities, strengths

and needs are more likely to express satisfaction with their individual employment 

outcomes. Research suggests that beyond the opportunity to earn wages, other benefits 

of integrated employment include expanded social relationships, higher job satisfaction, 

improved self-worth, transferable work skills, and increased self-determination.

Multiple studies indicate that self-determination status is a predictor of quality of life,

and is positively correlated with improved employment, independent living, and 

community inclusion outcomes.

23

22

21

21 Mank, D. (2003). Supported Employment Outcomes Across a Decade: Is There Evidence of

Iimprovement in the Quality of Iimplementation? Mental Retardation, 41(3), 188-197. 

Murphy, S. T., Rogan, P. M., Handley, M., Kincaid, C., & Royce-Davis, J. (2002). People’s Situations and

Perspectives Eight Years After Workshop Conversion. Mental Retardation, 40(1), 30-40. 22 Lachappelle Y., Wehmeyer M. L., Haelewyck M. C., Courbois Y., Keith K. D., Schalock R., Verdugo

M. A., & Walsh P. N. (2005) The Relationship Between Quality ofLlife and Self-Determination: an 

International Study. Wehmeyer, M. L. & Schwartz, M. (1998). The Relationship between SelfDetermination and Quality of Life for Adults with Mental Retardation. Education and Training in Mental

Retardation and Developmental Disabilities, 33, 3-12. 23 Ibid.

ADD has committed $4 million over 5 years to a consortium of five University 

Centers for Excellence on Developmental Disabilities to lead a self-determination 

national training initiative, the “National Gateway to Self-Determination.” The purpose 

of this project is to enable self-advocates, family members, professionals, agencies, and 

University Centers to “scale-up” efforts that promote self-determination throughout the 

lifespan and thereby positively affect individual outcomes. One component is a focus on 

the relationship between self-determination and employment, as self-determination is an 

essential element for enhancing individual control and involvement in employment, and

ultimately job satisfaction and success. The Self Determination project is providing 

training related to self-determination, developing evidence-based practices, and 

supporting the translation of research into practice.

24

24 Association on University Centers on Disabilities (AUCD) (2010). National Gateway to Self

Determination Training. Silver Spring, MD.
14

Other Administration Activities

Demonstration projects: Later this year, ADD will be investing over $2 million 

in demonstrations related to improving opportunities for people with intellectual and 

developmental disabilities to access competitive, integrated employment. These 

competitive grants will challenge applicants to develop and implement innovative 

public/private partnerships to improve employment outcomes for individuals with 

significant developmental and intellectual disabilities, and ensure improved access to 

integrated employment at competitive wages and benefits for such individuals, with a 

particular emphasis on assisting two groups: (1) youth and young adults transitioning 

from secondary or postsecondary school into competitive, integrated work, and (2) adults 

currently working in non-integrated facility-based supported employment settings to 

move to competitive, integrated employment settings. More details will be available 

about these funding opportunities later this year.

Longitudinal Data Collection: Data collection and analysis not only provides 

clarity, but as the old adage states, “What gets measured gets done, what gets measured 

and fed back gets done well, and what gets rewarded gets repeated.” For over 20 years, 

ADD has supported the Institute for Community Inclusion at University of Massachusetts 

Boston to collect and analyze data on the nature of day and employment services for 

individuals with intellectual/developmental disabilities; the Institute’s Director, Bill 

Kiernan, will also testify today. This project has contributed greatly to our nation’s 

comprehensive understanding of the factors that influence employment outcomes at every 

level -- individual, service provider, state and federal policy level.

Research shows a correlation between states that are collecting data from multiple 

sources, including employment outcome data collected at the individual level, and higher 

percentages of individuals in integrated employment. Frequent data collection at the 

individual level creates regular interaction between the state ID/DD agency and

providers, helps providers take an active role in working towards a shared goal of 

increased employment by giving the entities who are implementing activities a sense of 

ownership in the goals, provides information about training and technical assistance

25 

25 Hall, A.C., Butterworth, J., Winsor, J., Gilmore, D., & Metzel, D. (2007). Pushing the Employment 

Agenda: CaseStudyResearch of High Performing States in Integrated Employment. Intellectual and 

Developmental Disabilities,45(3), 182-198. 
15

needs on a timely basis, and can be used for better accountability with providers. The 

very process of the data collection efforts at the state level helps to improve employment 

outcomes in states.

26

26 Butterworth et al (2010). StateData: The National Report on Employment Services and Outcomes, 2009. 

Boston, MA: Institute for Community Inclusion .

Community Living Initiative: ADD is an important partner, along with the 

Social Security Administration’s Office of Employment Support and Ticket to Work 

Programs and the CMS Disabled and Elderly Health Programs Group, in the Community 

Living Initiative Employment Workgroup, led by the HHS Office on Disability. The 

workgroup goals include the development of options for workers with disabilities and/or 

chronic conditions to gain wraparound home and community-based services and supports 

to maintain employment, as well as to provide further clarification to stakeholders on 

how federal policy and programs can help people with disabilities find and maintain 

competitive employment.

In closing, I leave you with a quote from a woman with a developmental 

disability, Ms. Susan Willis, who shared this insight with ADD as part of our recent 

listening sessions, “When meeting someone new, we almost always ask, ‘What do you 

do?’ A person’s work seems to define who he or she is. It certainly gives people, 

especially those with disabilities, a sense of self-worth and confidence. With 

employment comes some level of self-sufficiency, and with that—independent living. 

Without a full or part-time job at reasonable wages, none of this can be realized.”

The Administration on Developmental Disabilities and the ADD network are 

striving to improve opportunities for individuals with intellectual and developmental 

disabilities to access competitive employment in integrated community settings. 

Thank you. I am happy to take any questions you may have.