Keeping the Dream Alive: Continuing Systems Change Beyond the MIG

1. Keeping the Dream Alive: Continuing Systems Change Beyond the MIG MIG Annual Summit Denver, CO May 10, 2011

2. Promoting Alignment of Systems Reform & Improved Employment OutcomesAn Overview of an EmergingCross-Disability Dialogue on Medicaid Reform Serena Lowe Executive Director Collaboration to Promote Self-DeterminationEwoLAneres@gmail.com

3. Building Reform from a Common Value Framework Equity Work Choice Dignity of Risk

4. Increasing Federal Focus around Employment • Collaboration to Promote Self-Determination (2007) • Driven by national organizations representing individuals with I/DD and their families • National Disabilities Leadership Alliance (2009) • Formerly known as Justice For All Action Network, or JFAAN • Network of national disability consumer-driven organizations • Initial collaborative work around proposing consistent reforms to state Medicaid waiver and plan processes (2012 HCBS Waiver Technical Guide) led to eventual discussion around a “MIG-II” strategy.

5. Bottom Line – Why We are Focused on Reform • We saw what was on the horizon, and decided that reform was going to happen with or without us, so we better be proactive and use the current national focus as an opportunity to elevate the connection between Medicaid and employment. Reform is inevitable…..

6. Bottom Line – Why We are Focused on Reform • We must create an opportunity to push the reforms that are necessary to address the systemic barriers that continue to impede progress in improved employment outcomes for PWD. The Question is, will we use the current dynamic as an opportunity or be bogged down by its inherent theats?

7. Changing Political EnvironmentGrowing Challenges....

8. The Status of Disability Employment Ten Years after the Introduction of the MIGs Michael Morris Executive Director, Burton Blatt Institute Executive Director, National Disability Institute mmorris@ndi-inc.org

9. MIGs: Statutory Purpose • maximize employment opportunities for people with disabilities; • protect and enhance access to health care, other benefits, and necessary employment supports; and • expand the states’ labor force through the inclusion of individuals with disabilities.

10. MIG: By The Numbers • Between 2001 and 2011, over $300 million was awarded by CMS to 49 states, DC, and the US Virgin Islands. • The average inflation-adjusted annual earnings among Buy-In participants across all 37 MIG/Buy-In states in 2009 were $8,677, a three percent decline from the 2008 average. Again, this likely reflects the effects of the economy on hours worked and hourly wages. • Average annual earnings ranged from $4,652 per year in Wisconsin to $15,446 per year in Arkansas.

11. MIG: By The Numbers

12. MIG: By The Numbers • Average earnings remained below the annualized substantial gainful activity (SGA) level for non-blind individuals in all but 7 of the 37 states.

13. Poverty By The Numbers • In 2009, 43.6 million people were living in poverty in the US. This is up 3.8 million from 2008 and is the highest number since 1959. • Poverty rate jumped 14.3% in 2009. • This number is equal to one in seven residents. • For people with disabilities, the number is one in three.

14. Social Security By The Numbers • For the last five years, Social Security has paid out more in benefits to disabled workers than it has taken in from payroll taxes. • The downturn in the economy has led to record increases in application for Social Security benefits. • About 8.2 million people collected disabled worker benefits totaling $115 billion in 2010. • About one in 21 Americans from ages 25-64 receive the benefit. • In Arkansas, it is one in 12.

15. Social Security By The Numbers • Out of 12.5 million disabled workers and those who receive benefits for the disabled poor, only 13,656 returned to work during 2009-2011, with less than a third earning enough to drop benefits altogether • In 2009, 32,445 recipients left the benefit rolls because they were earning enough in jobs without the Ticket to Work program.

16. Impact of 2007-2009 Recession on Workers with Disabilities • The proportion of employed US workers identified as having disabilities declined by 9 percent. • The proportion of workers between ages of 18 and 39 reporting disabilities dropped by 17.5 percent over the same period. • Workers with disabilities are more likely to be in low-skill occupations. However, there is no disproportionate impact of the recession on workers in high-skill and low-skill occupations.

17. Impact of 2007-2009 Recession on Workers with Disabilities • Many people with disabilities exit the labor force permanently during economic downturns. • Men with disabilities were more likely to experience the effects of the recession than women with disabilities. • People with disabilities working in highly skilled occupations appear to have been least affected throughout the period.

18. Federal Investments in Employment & Training: Opportunities to Reduce Fragmentation, Overlap, and Potential Duplication • 44 of the 47 employment and training programs overlap with at least one other program in that they provide at least one similar service to a similar population. • In 2009, 47 programs spent about $18 billion to provide services, such as job search and job counseling. • GAO found these programs maintain parallel administrative structures to provide some of the same services.

19. What did We Learn through the MIGs? Karen Jane McCulloh, RN, BS Past-President National Organization of Nurses with Disabilities karenmcculloh@gmail.com

20. MIG Successes • Increase in states adopting Buy-In • Increase in number of Buy-In participants • Improved cross-agency collaboration • Changes in Infrastructure • Changes in Capacity for Benefits Planning • Changes in provision of PAS • Expanded connection between employment and economic stability, savings, and asset building

21. Adapting to the New Environment • Metrics and Measurement • All costs must produce clear measurable benefits • States pocket of excellence must be scalable; disparities in state outcomes must translate nationwide • Sustainable value that can be quantified • Transformational policy and infrastructure change

22. Rising to the Occasion: Translating Systems Change into Improved Individual Outcomes • Many MIGs were successful in building the sustainable infrastructure required to perpetuate systems-change and transformation. But disparities among states exist. • Now is the time to make sure that transformation continues, is sustained over time and results in improved outcomes. • Moving forward, systems change must lead to improvements in employment outcomes at the individual level.

23. Moving Forward: Proposed Framework & Strategic Recommendations for Promoting Employment First in Medicaid Reform Allan Bergman High Impact Mission-based Consulting & Training aibergman@comcast.net

24. Medicaid Reform: Principle Framework • Emphasis on person-centered practices • Primary focus on Employment First strategies* • Stronger accountability through improved consumer outcome-based performance measures • Compliance with ADA and Olmstead decision re: “most integrated setting” • Use of Medicaid waiver or state plan services for the purchase of benefits planning services • Increased cross-systems coordination • Statutory authority and stronger leadership role by CMS in establishing fee structures and reimbursement rates to assure financial incentives that promote community-based outcomes * = Recognition that Medicaid services should increase individual self-sufficiency but a majority of individuals will still require a certain level of long term supports throughout the lifespan that are not available through private health insurance or The Exchanges in 2014.

25. Medicaid Reform: Principle Framework • Greater flexibility to states through the coordination and sharing of resources across systems through planning, braiding and blending strategies for multiple funding streams • Increased consumer & family control over planning processes, service options and resources • Broader focus on the role of families or friends as caregivers (when necessary and appropriate) • Significant transparency in the dissemination of information to individuals and families to ensure an easier navigation through various systems and support options focused on promoting the optimal independence and self-sufficiency of each individual • Attention to programs for dual eligibles to assure continued optimal integrated engagement

26. Medicaid Reform: Proposed Recommendations • Promote Employment First strategies through systems-coordination, aligned guidance, and consistent definitions and objectives related to the use of public funds. • Develop a model for the Establishment of a National Medicaid Buy-In program. • Incentivize integrated employment through enhanced FFP rate. • Time limit HCBS funding for prevocational training services and segregated placements. • Work with SSA and other federal agencies to fund state-centric work incentives, technical assistance and other collaborative strategies. • Provide continued statutory support for rebalancing initiative. • Improve data collection systems across state programs. • Promote evidence-based promising practices to scale. • Improve evaluation and accountability of State Medicaid plans and Waiver applications. • Outline criteria to ensure state compliance of Olmstead decision through legislative and regulatory guidance.

27. Discussion Feedback on Proposed Recommendations & Strategy

28. Questions • How can we bridge the real-time experiences at the state level with the policy decision-making process at the federal level? • What are some continual policy barriers that are impeding progress of MIG-initiated systemic reforms, infrastructure development, and capacity-building efforts? • What gaps do you see in our framework, recommendations, and strategy?