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Employment first modernizing disability policy in the 21st century (6) (1)

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Employment first modernizing disability policy in the 21st century (6) (1)

  1. 1. EMPLOYMENT FIRST:Modernizing Disability Policy in the 21st Century   April 8, 2013 Madison, Wisconsin Madeleine WillThe Collaboration to Promote Self-Determination National Down Syndrome Society   1
  2. 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. 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. 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. 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. 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. 6
  7. 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. 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 toEmployment 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) 8
  9. 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 9
  10. 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 conditionsData 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. 11. Evolved Thinking: Changed Public PolicyFrom: 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.
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  13. 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 anysubcategory of Americans for the tenth year in a row•They experienced unacceptably high unemployment rates for decades—70% forall persons with disability and 90% for those with ID/DD (between 500-600kindividuals are in sheltered workshops or non-work programs earning little ornothing)•SSDI/SSI annual cost will likely approach 1 trillion dollars in 2023 (currently,only .02 of 1% of beneficiaries leave rolls voluntarily)
  14. 14. Is Lack of Spending the Problem??? 14
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  16. 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
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  19. 19. New ThinkingDefining 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. 20. Modernizing Disability Policy RequiresThe creation of a system built on an Employment Firstpresumption of COMPETENCY  to work and save AND EQUALLY IMPORTANTThis system will reward, rather than penalize, individualswho achieve partial self-sufficiency-- but requirecontinued assistance to offset the tremendous costsrelated to their disabilities 20
  21. 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 rootsinnovation 21
  22. 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. 23. State Employment First InitiativesStates are:Developing service delivery strategies that lead to the preferred outcome of integrated employment at minimum wagePlacing of employment presumption in laws and regulationsAligning policies and procedures, creating incentives and reimbursing at higher level for employment outcomesAttempting to blend and braid resourcesUsing person centered planning, and individual budgets directed by families and self-advocates to assist people to live and work in the community
  24. 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 doesnt 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. 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. 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. 27. Centers on Medicare and Medicaid (CMS) GuidanceCMS addresses implementation of goal topromote integrated employment optionthrough waiver program
  28. 28. Major Changes in the Instructionsand Technical Guide Acknowledges best and promising practices inemployment support, including self direction and peersupport options for employment supportClarifies that Ticket to Work Outcome and Milestonepayments are not in conflict with payment for Medicaidservices rendered because both Ticket to Work andAdds a new core service definition for individual andsmall group supported employment Includes a new service definition for career planning 28
  29. 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. 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. 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. 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. 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. 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. 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. 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 36
  37. 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. 38. HELP Reflect Decide Act Collaborate Mind the language! 38
  39. 39. What Does the Future Hold For Them? 39