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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 Societymwill@thecpsd.org

 

Evolved Thinking: Changed Public Policy

From:Assuming that people with I/DD

Need to be taken care of Can’t work Need constant

supervision Are a burden to families

To:Discovering that people with I/DD

Can be self sufficient Can work and pay taxes Don’t need constant

supervision Are valued family members

Key Point: People need support that match their

needs.

Achievement of Several DecadesPersons 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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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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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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Moving into the New Millennium

Expectations were high for continued progress…

Not so fast…

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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)

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Figure 1. Percentage of Estimated Federal and State Expenditures for Working-Age People with Disabilities by Major Expenditure Category, Fiscal Year 2008[1]

Healthcare55%

Income Main-tenance

41%

Housing & Food Assistance

3%

Education, Em-ployment & Training

1%Other Services

1%

[1] Adapted from Livermore, Stapleton and O’Toole (2011, Health Affairs)

Money is not Always the problem….Sometimes the problem is an Issue of Priority

$357 Billion in FY2008

Also includes LTSS for PWD via Medicaid & Medicare

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From the Cyclical Dependency Model…

Lifelong poverty and dependence

Unemployment

Lack of choice and opportunity

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To the Self-Sufficiency Investment Model

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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0%

20%

40%

60%

80%

100%

2009 – UMASS Boston ICI ID/DD Agency Survey

But success in employment varies widely across 30 states

Washington State (88 %)Oklahoma (60%)Connecticut (54%)Louisiana (47%)New Hampshire (46%)

We Had Proved that People Can Work When Services Focus on

Employment

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BECAUSE Personal Freedom and Economic Self-Sufficiency are Cost Effective

SERVICE AREA

CYCLICAL DEPENDENCY

SELF-SUFFICIENCY MODEL

EducationSegregated: $25-45K/student/year

Full Inclusion: $12-26K/student/year

Employment

Average annual costs of Sheltered Work (SW)/Individual: $19,388SW is less cost-efficient to taxpayers: 0.83SW is less cost-efficient to workers: 0.24

Ave annual costs of Supported Employment (SE)/Individual: $6,619SE is more cost-efficient to taxpayers: 1.21SE is more cost-efficient to 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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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.

Barriers Had to Be Confronted

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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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

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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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

 

Specific State Initiatives

Ohio Governor John Kasich

Delaware Governor Jack Markell

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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

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

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 22

Medicare and Medicaid Guidance

Using Employment First StrategiesThe 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)

ABLE Act Legislation: Purpose

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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TEAM Legislation: Purpose

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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Policy Makers will Shape Their Future

Olivia: Finding Success in Integrated Employment

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