1. EMPLOYMENT FIRST:
Modernizing Disability Policy
in the 21st Century
April 9, 2013
Madison, Wisconsin
Madeleine Will
The Collaboration to Promote Self-Determination
National Down Syndrome Society
mwill@thecpsd.org
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2. Evolved Thinking: Changed Public Policy
From: To:
Assuming that people with I/DD Discovering that people with I/DD
 Need to be taken care of  Can be self sufficient
 Can’t work  Can work and pay taxes
 Need constant supervision  Don’t need constant
 Are a burden to families supervision
 Are valued family members
Key Point:
People need support that match their needs.

3. Persons with disabilities were living with families and in communities
Children with disabilities were given a guarantee of education
Classrooms created and schools made physically accessible
Classroom instruction developed in an individualized way
The profession of special education greatly expanded
Progress in medical care leading to increased longevity
Progress in technology and pedagogy is laying the foundation for improved
learning, working and living opportunities
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4. Supported Employment—a
Wisconsin Legacy
 In 1984-1986, development of Supported Employment
systems change grants; state experimentation in
Wisconsin, Washington and other states
 In 1986, Supported Employment (SE) services were
permitted through HCBS waivers to individuals who
had been institutionalized before entering waiver
program
 In 1997, permissible to receive SE without having been
institutionalized before entering waiver program
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5. A Heavy Lift:
1986 Rehabilitation Act Definition
of Supported Employment
(A) In general the term "supported employment" means
competitive work in integrated work settings, or
employment in integrated work settings in which
individuals are working toward competitive work,
consistent with the strengths, resources, priorities,
concerns, abilities, capabilities, interests, and informed
choice of the individuals, for individuals with the most
significant disabilities —who require intensive services
and support
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6. 6

7. Moving into the New Millennium
Expectations were high for
continued progress…
Not so fast…
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8. The Reality is Poverty: Look at the Numbers
SUBPOPULATION 2009 Poverty Rate 2010 Poverty Rate
Children 20.7% 22.0%
African-American 25.8% 27.4%
Hispanic 25.3% 26.6%
Disability 25.0% 27.9%
Total U.S. Population 14.3% 15.1%
U.S. Census Bureau (13 September 2011)
•46.2 million Americans were living in poverty in 2010
•Persons with disabilities experienced the highest rates of poverty of any
subcategory of Americans for the tenth year in a row
•They experienced unacceptably high unemployment rates for decades—70% for
all persons with disability and 90% for those with ID/DD (between 500-600k
individuals are in sheltered workshops or non-work programs earning little or
nothing)
•SSDI/SSI annual cost will likely approach 1 trillion dollars in 2023
(currently, only .02 of 1% of beneficiaries leave rolls voluntarily)

9. Figure 1. Percentage of Estimated Federal and State Expenditures for
Working-Age People with Disabilities by Major Expenditure Category, Fiscal
Year 2008[1]
Housing & Education, E Other
Food mployment & Services
Assistance Training 0%
3% 1%
$357
Billion
Income
Maintenance in
Healthcare
41%
55%
FY2008
Also includes
LTSS for PWD
via Medicaid &
Medicare
[1] Adapted from Livermore, Stapleton and O’Toole (2011, Health Affairs)
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10. Lifelong poverty and dependence
Unemployment
Lack of choice and opportunity
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11. High expectations and accountability in school
Work experience as part of transition
Integrated employment in the general workforce
Focus on getting a person a place to life in the community
Opportunity to make choices and direct one’s life
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12. We Had Proved that People Can Work
When Services Focus on Employment
But success in employment varies widely across 30 states
100%
Washington State (88 %)
Oklahoma (60%)
Connecticut (54%)
80% Louisiana (47%)
New Hampshire (46%)
60%
40%
20%
0%
2009 – UMASS Boston ICI ID/DD Agency Survey
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13. SERVICE AREA CYCLICAL DEPENDENCY SELF-SUFFICIENCY MODEL
Segregated: Full Inclusion:
Education $25-45K/student/year $12-26K/student/year
Average annual costs of Ave annual costs of Supported
Sheltered Work Employment (SE)/Individual:
(SW)/Individual: $19,388 $6,619
SW is less cost-efficient to SE is more cost-efficient to
Employment
taxpayers: 0.83 taxpayers: 1.21
SW is less cost-efficient to SE is more cost-efficient to
workers: 0.24 workers: 4.20
Data Sources:
Education: Weiner, 1985; Carlberg & Kavale, 1980; Baker, Wang & Walberg 1995; Piuma, 1989; Blackorby & Wagner, 2001.
Employment: Cimera, R. (2007, 2008, 2009, 2010)
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14. Lots of Data Available
 Lower per capita costs
 Average follow along supports three times lower over
an eight year period (Wisconsin study)
 Individual with disabilities earn more and costs less
 Greater return in wages than in monetary costs
regardless of their state of residence or number of
disabling conditions
Data Source: National Council on Disability: Medicaid Managed Care for People with Disabilities (March 2013)
1) R. E. Cimera, ―The Cost Trends of Supported Employment Versus Sheltered Employment,‖ Journal of Vocational
Rehabilitation 28 (2008): 15–20.
2) R. E. Cimera, An Evaluation of the Long-Term Service Costs and Vocational Outcomes of Supported and Center-Based
Employees in Wisconsin (August 2010), http://www.dhs.wisconsin.gov/wipathways/pdf/cimera.pdf.
3) R. E. Cimera, ―The National Cost-Efficiency of Supported Employees with Intellectual Disabilities: The Worker’s
Perspective,‖ Journal of Vocational Rehabilitation 33 (2010): 123–31.
4) R. E. Dunn, N. J. Wewiorski, and E. S. Rogers, ―The Meaning and Importance of Employment to People in Recovery
from Serious Mental Illness: Results of a Qualitative Study,‖ Psychiatric Rehabilitation Journal 32, no. 1: 59–62.
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15. Inability to save – asset limitation of $2000
Inability to earn – income limitation (approx. $600)
Fear of loss of benefits and other disincentives to
employment
Fragmented and confusing system of supports at federal
and state level of government
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16. New Thinking
Investing in the competency and value of persons with
disabilities to achieve economic and personal freedom
Not exchanging benefits for poverty and dependence
Spending public dollars more wisely to help build the
capacity of providers to make the transition to
employment and to the self sufficiency investment
model
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17. An Concept Emerging From States:
Employment First
In general, employment in the workforce
needed to be the first and preferred outcome in
the provision of publicly funded services for
all working age citizens with disabilities,
regardless of level of disability.
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18. State Employment First Initiatives
› 30+ states have some type of ―Employment First‖
effort
› At least 19 states have official Employment First
legislation and/or polices
› Employment First is not just a policy – to do it right
requires comprehensive systems modernization

19. Ohio Governor John Kasich
Delaware Governor Jack Markell
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20. State Initiatives Influenced the
National Disability Community
The Collaboration to Promote
Self-Determination (CPSD)
A national coalition that seeks to:
Modernize federal programs so they maximize
self-sufficiency and economic security;
Eliminate barriers to work and savings while
preserving vital, long-term public supports;
Build on state and grass roots innovation
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21. A Breakthrough:
Centers on Medicare and Medicaid (CMS)
Guidance – September 16, 2011
CMS addresses implementation of goal
to promote integrated employment
option through Medicaid (HCBS) waiver
program

22. Medicare and Medicaid Guidance
 Acknowledges best practices in employment support,
including self direction and peer support options
 Clarifies that reimbursements can be for outcomes, not
service delivery
 Adds a new core service definition for individual and
small group supported employment
 Includes a new service definition for career planning
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23. Using Employment First Strategies
The Collaboration to Promote
Self-Determination
 Achieving a Better Life Experience (ABLE) Act (H.R.
647/S.313)
 Transition toward Excellence Achievement & Mobility
(TEAM) Act
› TEAM – Employment (H.R. 509)
› TEAM – Education (H.R. 510)
› TEAM – Empowerment (H.R. 511)L
 Incentives for earning and saving (re-structuring asset
and income limitations)

24. Allow individuals and families to create a tax
advantaged 529-education –like savings account that
does not jeopardize benefits
Encourage planning and saving for expenses incurred
across the lifespan—education, health care,
employment training and support, transportation
and housing
Requires a Medicaid pay-back when the individual
passes away
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25. Establish a coordinated, comprehensive approach to the
investment of public resources based on Employment First
concept
Expand and improve the opportunities for youth with
significant disabilities who are transitioning into adulthood
Ensure meaningful postsecondary educational opportunities
and employment in integrated settings at a competitive wage
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26. Policy Makers will Shape Their Future
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