Washington Update and the Affordable Care Act

1. Washington Update and the Affordable Care Act The Arc of Illinois Executive Forum Marty Ford & Julie Ward The Arc December 4, 2013

2. Presentation Outline: • UN Convention on the Rights of Persons with Disabilities • ABLE Act • Budget • Medicaid Managed Care • Social Security / SSI • ACA

3. Where Are We Now?Congressional Inaction Stalled Reauthorizations: Workforce Investment Act/Rehabilitation Act(1998) Developmental Disabilities Act (2000) Elementary and Secondary Education Act (2002) Individuals with Disabilities Education Act (2004) Temporary Assistance for Needy Families (2005) Supplemental Nutrition Assistance Program (2008)

4. CPRD • Convention on the Rights of Persons with Disabilities • Opposition overwhelming supporters • Home-school and anti-abortion advocates • More than 800 organizations supporting • Businesses as well as disability and veterans groups • Petition with 67,000 signatures delivered to Senate • Two Senate hearings have taken place • 11/05/13 and 11/21/13 – Foreign Relations Committee • No floor vote scheduled

5. ABLE Act • Achieving a Better Life Experience (ABLE) Act, H.R. 647, S. 313: • Goal: To help people with disabilities and their families save to meet their long-term ongoing support needs • Would authorize ABLE savings accounts for people with disabilities • Intended to be simple to use

6. Structure of ABLE Accounts • Structured within existing 529 qualified tuition program • Qualified disability expenses: • Education • Housing • Transportation • Employment support • Health, prevention and wellness • Assistive technology and personal support • Other approved expenses • Miscellaneous financial management expenses, etc.

7. Eligibility SSI or Social Security disability Medically determinable physical or mental impairment, which results in marked and severe functional limitations, which will last 12 months or result in death AND provides copy of diagnosis signed by physician

8. Relationship to SSI and Medicaid • SSI cash payments suspended at $100,000 in account; SSI eligibility remains intact • SSI cash payment re-start when account drops below $100,000 (no re-application) • Medicaid payback provision included • At death (or if disability ceases), funds left in account pay back Medicaid (up to amounts paid on individual’s behalf during period account was held).

9. Where ABLE Stands H.R. 647: Rep. Ander Crenshaw (R-FL) and 311 co-sponsors S. 313: Senator Bob Casey (D-PA) and 50 co-sponsors Very bipartisan ************* ABLE Act amends the tax code Could go on a major tax bill Could move as separate, stand-alone bill

10. 2014 Budget Conference Committee • Created Oct 16 • Charged with developing a long-term plan by Dec 13 • Seeking to find common ground between the FY 2014 House and Senate Budgets • Two public meetings held to date • House Members Senate Members Debbie Stabenow (D-MI)Jeff Sessions (R-AL)Pat Toomey (R-PA)Mark Warner (D-VA)Sheldon Whitehouse (D-RI)Roger Wicker (R-MS) Tim Kaine (D-VA)Angus King (I-ME)Patty Murray (D-WA)*Jeff Merkely (D-OR)Rob Portman (R-OH)Ron Wyden (D-OR)Bill Nelson (D-FL)Bernie Sanders (I-VT) Diane Black (R-TN)Tom Cole (R-OK)James Clyburn (D-SC)Nita Lowey (D-NY)Tom Price (R-GA)Paul Ryan (R-WI)* Chris Van Hollen (D-MD) Kelly Ayotte (R-NH)Tammy Baldwin (D-WI)Michael Crapo (R-ID)Chris Coons (D-DE)Mike Enzi (R-WY)Lindsey Graham (R-SC)Charles Grassley (R-IA)Ron Johnson (R-WI)

11. House and Senate 2014 Budget 10 year plans

12. Options for Reducing the Deficit • The Congressional Budget Office (CBO) released its report “Options for Reducing the Deficit: 2014-2023” on Nov 13 • A number of the options would be harmful to people with disabilities: • reducing Social Security benefits for new beneficiaries by 15% • using an alternative measure of inflation (the “chained” consumer price index (CPI)) to index Social Security and other mandatory programs • raising the full retirement age for Social Security • eliminating Supplemental Security Income (SSI) benefits for children

13. Where are We Now?Looming Threats • Medicaid • Severe cuts • Global or Per Person Caps • Social Security / SSI • Potential for cuts as part of deficit reduction • Need to replenish the Disability Insurance Trust Fund (projected date: 2016) • Affordable Care Act • Implementation

14. Where are We Now?What We’re Watching Medicaid managed LTSS • States moving to managed Long Term Services and Supports for I/DD • Kansas - Jan 1, 2014 • NY – 1915(b)(c) People First Waiver - pending • CA – 1915(i) for those not meeting ICF/ID level of care - pending • NH – 1932(a) – I/DD phase II in 2014

15. Where are We Now?What We’re Watching Demonstrations for dually eligible MOUs negotiated (CA, IL, MA, MN, NY, OH, VA, WA) Only WA and VA include a small number of I/DD

16. Social Security & SSI – Under Attack Social Security is no longer the Third Rail Attempts to include in deficit reduction, tax reform, entitlement reform Many attacks on Social Security disability programs Skewed media coverage Timing is bad

17. The Arc’s Response The Arc’s Peter Berns speaks out in Washington to protect Social Security from cuts in budget negotiations. At left, Sen. Sheldon Whitehouse (D-RI). Preserve benefits, eligibility for current and future beneficiaries Keep Social Security and SSI out of deficit reduction efforts Maintain the basic structure of Social Security and SSI Support adequate administrative funding and program enhancements for people with disabilities

18. Social Security & SSI Resources With Congress gearing up for more “fiscal cliff” battles this year, The Arc is concerned about threats to Social Security and Supplemental Security Income (SSI). These lifelines provide essential financial security for millions of Americans, including people with intellectual and developmental disabilities (I/DD).

19. ACA Implementation • Politically divisive law--each state different • Website woes and cancellation stories • The Arc emphasis on shaping the regulations • Through meetings with officials • Comments on regulations and guidance • Developing materials & updating website

20. Affordable Care Act (ACA) • Reforms Insurance Markets • Expands Coverage • Optional Medicaid expansion to 133% of poverty • Health insurance marketplaces (formerly called exchanges) • Enrollment period October 2013-March 2014 • Federal government, state or partnership models • Subsidized private insurance for low and moderate income

21. Insurance Reforms in 2014 • Can’t consider health status when calculating premiums • Prohibit discrimination based on health status • Eliminate use of annual limits for all • Guaranteed issue and renewability • Pre-existing condition clauses eliminated for adults

22. The Arc Web Resources

23. ACA Resources: In-depth analysis

24. ACA Resources:Impact on nonprofit employers

25. Most Recent NPM • Offer suggestions on what to think through • Cost is more than premiums • Provider networks and drug formularies critical • http://www.thearc.org/document.doc?id=4387

26. HHS Resources • For individuals needing health insurance • https://www.healthcare.gov/ • For chapters wanting educational and training resources • http://marketplace.cms.gov/

27. HHS Resources, continued http://marketplace.cms.gov/getofficialresources/widgets-and-badges/mp-badges-english.html

28. Issues for Monitoring Habilitation State mandates Medically frail Exchange or Medicaid Nondiscrimination Enrollment problems

29. Advocacy Challenges Telling our story Competing priorities Creating new champions

30. What Can Advocates Do? • Tell stories – how policy affects individuals • Self-advocates, siblings, parents, State and local chapters, direct support workers—all have a role to play • Why programs are important • What they mean to people • Necessary and basic--not luxuries

31. Spread the Word • Get friends and family involved • Work with other groups • Stay informed—visit • The Arc’s public policy page (www.thearc.org) • Sign up for action alerts

32. SAVE THE DATE 2014 Disability Policy SeminarApril 6-9, 2014Grand Hyatt Washington 2015 Disability Policy Seminar - New LocationApril 13-15, 2015Renaissance Washington DC

33. QUESTIONS?