The document summarizes the evolution of disability policy in the United States from institutionalization to community integration and employment. It discusses the benefits of supported employment compared to sheltered workshops, citing research showing supported employment leads to higher wages, lower costs, and greater independence. It calls for a new social contract based on the competency of individuals with disabilities and investing in their ability to work and achieve self-sufficiency rather than trapping them in poverty. Several state and federal initiatives promoting an "Employment First" approach are highlighted.

1. EMPLOYMENT FIRST:
Modernizing Disability Policy
in the 21st Century
April 8, 2013
Madison, Wisconsin
Madeleine Will
The Collaboration to Promote Self-Determination
National Down Syndrome Society
1

2. Disability Policy Continues to Evolve
A Little Bit of History
 Post-1945, deinstitutionalization movement
underway
 In 1950, a new Social Security Act title
creating a grant-in-aid program-- financial
assistance, medical and remedial care for the
“permanently and totally disabled”
 In 1965, Medicaid authorized as an
entitlement with joint fed/state involvement
to provide medical care to low-income people
2

3. Disability Policy Continues to Evolve
A Little Bit of History con’t
 In 1975, EHA-Education of
All Handicapped Children
Act asserted that children
with disabilities would
benefit from education
 In 1983, HCBS (1915c)
waiver added to SSA David Hoppe with son Gregory
allowing states to provide David Hoppe and the
IDEA Consensus building
services in the community
process of 1997
rather than in institutions
3

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
4

5. A Heavy Lift:
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
5

6. Rehabilitation Act Definition
of Supported Employment con’t
 (i)(I) for whom competitive employment has not
traditionally occurred; or
 (II) for whom competitive employment has been
interrupted or intermittent as a result of a significant
disability; and
 (ii) who, because of the nature and severity of their
disability, need intensive supported employment
services for the period, and
 who are individuals with the most significant
disabilities due to mental illness.
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7. We Have Proved that People Can Work
When Services Focus on Employment
But success in employment varies widely across 30 states
Washington State (88 %)
Oklahoma (60%)
Connecticut (54%)
Louisiana (47%)
New Hampshire (46%)
2009 – UMASS Boston ICI ID/DD Agency Survey
7

8. 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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9. Advantages of Supported Employment
Vs. Sheltered Work
Much Research is Available
 Pride and self-esteem
 More personal choices
 More community participation
 More personal relationships
 Enhanced skill development
 Greater socialization opportunities
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10. More Advantages
of Supported
Employment Vs. Sheltered Work
 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.
10

11. 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’t work  Can be self sufficient
 Need constant supervision  Can work and pay taxes
 Are a burden to families  Don’t need constant
supervision
 Are valued family members
Key Point:
People need support that match their
needs.

12. 12
12

13. 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)

14. Is Lack of Spending the Problem???
14

15. 15

16. Figure 1. Percentage of Estimated Federal and State Expenditures for
Working-Age People with Disabilities by Major Expenditure Category, Fiscal
Year 2008[1]
$357
Billion
in
FY2008
Also includes
LTSS for PWD
via Medicaid &
Medicare
[1]
Adapted from Livermore, Stapleton and O’Toole (2011, Health Affairs)
16

17. 17

18. 18

19. New Thinking
Defining a NEW social contract based on:
 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 First and to the self sufficiency
investment model
19

20. Modernizing Disability Policy
Requires
The creation of a system built on an Employment First
presumption of COMPETENCY to work and save
AND EQUALLY IMPORTANT
This system will reward, rather than penalize, individuals
who achieve partial self-sufficiency-- but require
continued assistance to offset the tremendous costs
related to their disabilities
20

21. 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;
Building on state and grass roots
innovation
21

22. • Executive Committee
• Autistic Self-Advocacy Network (ASAN)
• National Down Syndrome Congress (NDSC)
• National Down Syndrome Society (NDSS)
• National Fragile X Foundation (NFXF)
• TASH
• Steering Committee
• American Network of Community Options and Resources (ANCOR)
• Association of Persons for Supported Employment (APSE)
• Association of University Centers on Disability (AUCD)
• Council of Parents Attorneys and Advocates (COPAA)
• Institute for Educational Leadership (IEL)
• Muscular Dystrophy Association (MDA)
• National Association of State Directors on Developmental Disabilities Services (NASDDDS)
• National Disability Institute* (NDI)
• Physician-Parent Caregivers
• Service Employees International Union (SEIU)
• United Cerebral Palsy (UCP)
• NDI and NDSS provide financial and moral support. Over 150+ Senior Advisors
from 44 states
22

23. State Employment First Initiatives
States are:
Developing service delivery strategies that lead to the preferred
outcome of integrated employment at minimum wage
Placing of employment presumption in laws and regulations
Aligning policies and procedures, creating incentives and reimbursing
at higher level for employment outcomes
Attempting to blend and braid resources
Using person centered planning, and individual budgets directed by
families and self-advocates to assist people to live and work in the
community

24. State Employment First Initiatives con’t
 30+ states have some type of “Employment First” effort
 About 3/4 of efforts are directed by state policy units or are
legislatively based
 About 1/4 of efforts are grassroots based – i.e., outsiders working
to influence state policy and practice
 At least 19 states have official Employment First legislation and/or
polices
 Employment First doesn't change the numbers over night but it
does set clear priorities. Employment First is not just a policy – to
do it right requires comprehensive systems modernization

25. Other Signs of Momentum
 The development of post-secondary programs at
colleges and universities around the country focused on
academic enrichment, social integration and
employment outcomes
 Publication of National Council on Disability report
calling for phase out of subminimum wage and more
recent report on Medicaid Managed Care emphasizing
employment for persons with disabilities

26. Other Signs of Momentum con’t
 Senate HELP Committee Report: Unfinished Business:
The Making of Employment of People with Disabilities
a National Priority, calling for a 2015 deadline for
employing 6 million people with disabilities
 National Governor’s Association Initiative to increase
employment rates for people with disabilities
 Oregon lawsuit seeking to expand Olmstead decision to
cover employment settings. And US Department of
Justice intervention in lawsuit this week

27. Centers on Medicare and
Medicaid (CMS) Guidance
CMS addresses implementation of goal to
promote integrated employment option
through waiver program

28. Major Changes in the Instructions
and Technical Guide
 Acknowledges best and promising practices in
employment support, including self direction and peer
support options for employment support
Clarifies that Ticket to Work Outcome and Milestone
payments are not in conflict with payment for Medicaid
services rendered because both Ticket to Work and
Adds a new core service definition for individual and
small group supported employment
 Includes a new service definition for career planning
28

29. Major Changes in the Instructions and
Technical Guide con’t
 Payments can be made for an outcome, not service
delivery
 Emphasizes the critical role of person centered planning
in achieving employment outcomes
 Modifies both the prevocational services and supported
employment definitions to clarify that volunteer work
and other activities that are not paid, integrated
community employment are appropriately described in
pre-vocational, not supported employment services
29

30. Major Changes in the Instructions
and Technical Guide con’t
 Explains that pre-vocational services are not an end
point, but a time limited (although no specific limit is
given) service for the purpose of helping someone
obtain competitive employment
30

31. • Incentives for earning and saving (re-structuring asset
and income limitations)
• Individual budgets directed by families and self-
advocates
• Agency blending/braiding of funds to support
individuals in employment and independent living
• Personalized supports that assist people to live and
work in typical community settings
31

32. • 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)
32

33. • Establish a coordinated, comprehensive approach to the
investment of public resources
• 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
• Long-term career development and growth, and inclusion in
the community setting through independent living and social
engagement
33

34. • Requires transition services from age 14 on into IEP
• Invites State I/DD agency to participate in IEP process
from age 14 on
• Embeds best practices in transition process based on 5
Guideposts to Success
• Prohibits sheltered workshop placement as an outcome in
an IEP
• Funds more transition coordinators
34

35. • Mandates the creation of a transition services unit
within each State I/DD agency
• Requires state I/DD agency to develop a young adult’s
Individual Transition Plan (thus taking the place of the
IEP) through age 26
• Allows individuals with I/DD to select a transition
broker to help navigate service programs
35

36. • Provides grants to states to develop employment at
livable wages and/or participation in PSE programs
• Requires partnerships across state agencies (Vocational
Rehabilitation, Education, I/DD, Workforce Investment
Board, Medicaid) to receive grant
• Grant proposal to include:
• Self-direction through individual budgeting
• Blending and braiding of public resources
• Outcomes aimed at full integration (education, employment and
community living)
*Senate WIA Reauthorization draft included similar systems-change initiative
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37. CPSD Calling for : HELP
 From administrators and staff of state and
local agencies
 From service providers
 From parents and self-advocates
 From policymakers
37

38. HELP
 Reflect
 Decide
 Act
 Collaborate
Mind the language!
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39. What Does the Future Hold For Them?
39