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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

 

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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

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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 allowing states to provide services in the community rather than in institutions

David Hoppe with son Gregory

David Hoppe and the IDEA Consensus

building process of 1997

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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: 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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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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2009 – UMASS Boston ICI ID/DD Agency Survey

But success in employment varies widely across 30 statesBut success in employment varies widely across 30 states

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

We Have Proved that People Can Work When Services Focus on

Employment

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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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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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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.

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.

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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)

Is Lack of Spending the Problem???

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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]

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

$357 Billion in FY2008

Also includes LTSS for PWD via Medicaid & Medicare

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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

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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

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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

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• 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

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

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

 

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

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

Centers on Medicare and Medicaid (CMS) Guidance

CMS addresses implementation of goal to promote integrated employment option through waiver program

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

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Major Changes in the Instructions and Technical Guide

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

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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

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• 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

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• 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)

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• 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

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• 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

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• 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

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• 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

From administrators and staff of state and local agencies

From service providers

From parents and self-advocates

From policymakers

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CPSD Calling for : HELP

HELP

Reflect

Decide

Act

Collaborate Mind the language!

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What Does the Future Hold For Them?