1. Achieving a Better Life Experience (ABLE)

2. Agenda Federal ABLE Act Federal ABLE proposed regs State ABLE Implementation

3. ABLE: The Long Road to Passage Idea from parents around a kitchen table in Northern Virginia Eight long years of advocacy efforts

4. Massive cross-disability grassroots campaign led to passage https://www.youtube.com/watch?v=31uJaLNN6wA https://www.youtube.com/watch?v=31uJaLNN6wA

5. Power of the online petition….

6. The ABLE Act is Law The Stephen Beck, Jr. Achieving a Better Life Experience (ABLE) Act – became law on December 19, 2014 (Public Law 113- 295) – creates a new option for some people with disabilities and their families to save for the future, while protecting eligibility for public benefits.

7. What is an ABLE Account? ABLE accounts: – Are established in the new Section 529A Qualified ABLE Programs – Are qualified savings accounts that receive preferred federal tax treatment – Enable eligible individuals to save for disability related expenses – Are NOT yet available, and there are still some unknowns Funds in the ABLE Account are disregarded when establishing or maintaining eligibility for federal means-tested programs. – The only exception relates to Social Security benefits which are temporally suspended when the account exceeds $100,000.

8. Who is eligible to be an ABLE account beneficiary? To be eligible, individuals must meet two requirements: 1)Age requirement: must be disabled before age 26 2)Severity of disability: Have been determined to meet the disability requirements for Supplemental Security Income (SSI) or Social Security disability benefits (Title XVI or Title II of the Social Security Act), OR Submit a “disability certification”, including a physician’s diagnosis, that the individual meets criteria to be further established in regulations (essentially equal to Social Security level of disability).

9. What are some important requirements of ABLE accounts? Each eligible individual may have only one ABLE account. “Designated beneficiary” is the account owner. Account must be established in the designated beneficiary’s state of residence, or in a contracting state. Total annual contributions may not exceed the federal gift tax limit, which is currently $14,000. Multiple individuals may make contributions to the one ABLE account. Aggregate contributions may not exceed the state limit for 529 savings accounts. Only 1 Account per Person Account must be in state of residence

10. How may funds from an ABLE account be used? Distributions from an ABLE account may be made for qualified disability expenses, related to the individual’s disability or blindness and made for his/her benefit, including: – Education – Housing – Transportation – Employment training and support – Assistive technology and personal support services – Health, prevention, and wellness – Financial management and administrative services – Legal fees – Expenses for oversight and monitoring – Funeral and burial expenses – Any other expenses approved by the Secretary of the Treasury under regulations consistent with the purpose of the program Expenditures for non-qualified expenditures will be penalized (tax and potential SSI penalties).

11. Treatment of ABLE assets Account (up to $100,000) does not count towards establishing or maintaining eligibility for federal means- tested programs, e.g., Medicaid and SSI  Individuals can accumulate more than $2,000 in assets!  Many state bills extend this to state and local means- tested programs. Tax-exempt withdrawals Tax deduction for contributions in some states $2000 CAP ON ASSETS

12. Proposed Dept. of Treasury Federal ABLE Regulations Draft regs released on 6/22/15; 90 days to comment Mixed bag – some positive regulations and some pose concerns. Who may establish an ABLE account – Account owner = beneficiary – If beneficiary can’t establish on her own, then may be established by parent, guardian, or agent under power of attorney  More restrictive than expected (e.g., grandparent could not establish an account in beneficiary’s name)

13. Brief summary of proposed regs (cont’d) Eligible individual determination – Responsibility for verifying eligibility status is on the program administrator Program must specify the documentation needed to establish eligibility and maintain eligibility  Confusion about the level of diligence necessary for state to verify status  States must set rules for recertification, including a sliding scale for frequency of recertification based on type of impairment and possibility of a cure

14. Brief summary of proposed regs (cont’d) Residency requirement – Beneficiary must be resident of state or contracting state  No guidance about how to prove residency or “contracting state”  Positive: if beneficiary moves to a different state, can keep ABLE account from former state Definition of Qualified disability expenses  Positive: very broadly interpreted as “basic living expenses” and not limited to “medical necessity”

15. Brief summary of proposed regs (cont’d) State role in monitoring qualified disability expenses – Program must establish safeguards to distinguish between qualified and unqualified expenses, and housing expenses  May be difficult for programs to trace particular distributions to particular expenses Reporting requirements – Monthly reports to include type of qualified disability expenses  Reporting requirements may be challenging

16. State ABLE Bills Bills that have passed (28): – Already signed into law: AL, AR, CO, CT, DE, FL, KS, LA, MA, MD, MN, MT, ND, NE, NV, TN, TX, VA, WV, UT, VT, WA – Passed legislature and waiting for Governor to sign: HI, IA, IL, MO, NY, OH Active bills (12): CA, DC, LA, MA, ME, MI, NC, NJ, OR, PA, RI, WI

17. State ABLE Action Enacted Passed Legislature Introduced Did Not Pass in 2015 No Bill

18. Structure of State ABLE Programs Must be a “Qualified ABLE Program” Most common setup is through State Treasurer’s Office Other government entities (e.g., Dept. of Health) Quasi-government entities (e.g., new private administrator subject to government oversight) – the Florida model

19. Questions? Heather Sachs, J.D.Stuart Spielman, J.D. VP of Advocacy & Public Policy Senior Policy Adviser and Counsel National Down Syndrome SocietyAutism Speaks hsachs@ndss.orgsspielman@autismspeaks.org