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

Where Are We Now? Congressional Inaction 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) 3 Stalled Reauthorizations: December 4, 2013

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 4 December 4, 2013

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 5 December 4, 2013

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. 6 December 4, 2013

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 7 December 4, 2013

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). 8 December 4, 2013

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 9 December 4, 2013

2014 Budget Conference Committee 10 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 Diane Black (R-TN) Tom Cole (R-OK) James Clyburn (D-SC) Nita Lowey (D-NY) Tom Price (R-GA) Paul Ryan (R-WI)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-MDChris 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) Tim Kaine (D-VA) Angus King (I-ME) Patty Murray (D-WA)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) Jeff Merkely (D-OR) Rob Portman (R-OH) Ron Wyden (D-OR) Bill Nelson (D-FL) Bernie Sanders (I-VT) Debbie Stabenow (D-MI) Jeff Sessions (R-AL) Pat Toomey (R-PA) Mark Warner (D-VA) Sheldon Whitehouse (D-RI) Roger Wicker (R-MS ) House Members Senate Members

House and Senate 2014 Budget 10 year plans 11 HouseSenate ACA Repeals the ACA Cuts health spending by $1.8 trillion $10 billion in unspecified cuts to health programs Medicaid Block grants Medicaid and cuts spending by $810 billion $10 billion in Medicaid cuts with caveat that none affect beneficiaries Medicare Turns Medicare into a voucher program and has steep cuts in Medicare payments to doctors $265 billion in Medicare cuts Social Security and SSI Social Security not cut, but President and Congress required to develop solvency plan. $300 billion cut from the income security portion of the budget which includes SSI No changes Non-Defense Discretionary Programs $3.8 trillion cut beyond the across-the-board spending cuts Replaces the across-the-board spending cuts with $493 billion in domestic spending cuts, in addition to above Revenue (Taxes) Cuts taxes by $5.7 trillion$975 billion in new revenue through unspecified tax reform, such as eliminating deductions and credits. Specifies that increases should come from wealthy families and big corporations December 4, 2013

Options for Reducing the Deficit 12 The Congressional Budget Office (CBO) released its report “Options for Reducing the Deficit: ” on Nov 13Options for Reducing the Deficit: 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

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 13 December 4, 2013

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 December 4, 2013

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 15 December 4, 2013

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 16 December 4, 2013

The Arc’s Response 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 17 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). December 4, 2013

Social Security & SSI Resources 18 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). December 4, 2013

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 19 December 4, 2013

Affordable Care Act (ACA 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 20 December 4, 2013

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 21 December 4, 2013

The Arc Web Resources 22

ACA Resources: In-depth analysis 23

ACA Resources: Impact on nonprofit employers 24

Most Recent NPM Offer suggestions on what to think through Cost is more than premiums Provider networks and drug formularies critical rg/document.doc?id= rg/document.doc?id=

HHS Resources For individuals needing health insurance – For chapters wanting educational and training resources – December 4, 2013

HHS Resources, continued esources/widgets-and-badges/mp- badges-english.html esources/widgets-and-badges/mp- badges-english.html 27 December 4, 2013

Issues for Monitoring Habilitation State mandates Medically frail Exchange or Medicaid Nondiscrimination Enrollment problems 28 December 4, 2013

Advocacy Challenges Telling our story Competing priorities Creating new champions 29 December 4, 2013

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 December 4,

Spread the Word Get friends and family involved Work with other groups Stay informed—visit – The Arc’s public policy page ( – Sign up for action alerts December 4,

SAVE THE DATE 2014 Disability Policy Seminar April 6-9, 2014 Grand Hyatt Washington 2015 Disability Policy Seminar - New Location April 13-15, 2015 Renaissance Washington DC December 4,

QUESTIONS? December 4,