The leading human rights organization for all individuals with Down syndrome.

National Down Syndrome Society
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New York New York 10017
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Testimony to the Internal Revenue Service on Proposed ABLE Regulations from Sara Weir

Good Morning!  My name is Sara Weir, and I am the President of the National Down Syndrome Society (NDSS).  NDSS represents over 400,000 people with Down syndrome in the United States and was a leader in the national effort to pass the Stephen Beck Jr. Achieving a Better Life Experience (ABLE) Act.  We firmly believe that, as you hear comments today and formulate the final regulations, it will be helpful to obtain an historical perspective on how ABLE came into existence as well as expanded detail on our written comments that were previously submitted.

History of Federal ABLE Act

The idea for ABLE started nearly a decade ago around a kitchen table in Northern Virginia, where a group of parents from a local Down syndrome parent group were discussing the inequities and injustice that existed in the current system as it relates to the ability for all individuals with disabilities and their families to save for the future.  These parents, along with staff of the National Down Syndrome Society (NDSS), were instrumental in the introduction of the first ABLE bill by Congressman Ander Crenshaw (R-FL), which at the time was called the Financial Savings Account for Individuals with Disabilities (FSAID) Act in 2006.  NDSS, Autism Speaks, and a coalition of over 100 disability groups prioritized this bill and advocates came back to Capitol Hill year after year to urge its passage.  In 2010, the bill was renamed the Achieving a Better Life Experience (ABLE) Act in an effort to better define the goals of the legislation, and, ultimately, was rewritten to place the ABLE program under the auspices of the 529 college and university savings program in the IRS Tax Code.  In 2014, Senators Robert Casey Jr. (D-PA) and Richard Burr (R-NC) and Representatives Crenshaw, Cathy McMorris Rodgers (R-WA), Chris Van Hollen (D-MD) and Pete Sessions (R-TX), along with their Congressional staffs, led the passage of ABLE Act in the 113th Congress.  After many years of advocacy, the momentum behind the ABLE Act intensified in the 113th Congress after the bill continued to receive record-breaking cosponsors and media attention.  

On December 3, 2014, the US House of Representatives passed the ABLE Act 404-17, and a few days later, the US Senate passed the ABLE Act as part of the Tax Extenders Package of 2014.  At the end of the Congress, the bill garnered the support of 85 percent of the entire 113th Congress – 381 of 435 US Representatives and 78 of 100 US Senators - cosponsored the legislation, making it one of the most bipartisan laws ever passed in the history of any Congress in the United States.  The Stephen Beck Jr. ABLE Act (Public Law 113-295) was signed into law on December 18, 2014 by President Obama.

The ABLE Act is named after the late National Down Syndrome Society (NDSS) Vice Chairman and quarterback of the legislation, Stephen Beck Jr., one of the original “kitchen table parents” and a father of two daughters – Marie Rose and Natalie, who made it his life’s passion to ensure his daughter, Natalie, who happens to have Down syndrome, had the same opportunities to save as everyone else. Beck passed away just days after the US House of Representatives passed the ABLE Act.

NDSS a Leader in State ABLE Implementation Efforts

NDSS has actively assisted legislators and advocates in facilitating the passage of state ABLE bills, and to date, 35 states have passed – and 33 states have enacted – their own ABLE bills.  Thirty-one of such state ABLE laws actually establish ABLE program infrastructure, and these states are in various stages of ABLE program development.  NDSS has openly and collaboratively discussed ABLE program design in light of the proposed regulations with major stakeholders from the financial sector, College Savings Plans, State Treasurers’ Offices, and of course other disability groups. 

ABLE National Resource Center

NDSS, along with the National Disability Institute, Autism Speaks and the Disability Opportunity Fund, recently launched the ABLE National Resource Center (“ANRC”).  The ANRC, comprised of these four steering organizations and over 30 other national disability groups, will provide consistent, reliable information about the benefits of an ABLE account and its potential impact on quality of life experience for individuals with disabilities. Additionally, the ANRC will educate individuals with disabilities and their families, state governments and related agencies, financial service companies, and financial planners and attorneys in relevant specialty areas, about the rules governing the administration and use of these accounts.

Legislative Intent of Federal ABLE

Because NDSS played such an active role in the federal ABLE effort, we have firsthand knowledge about the legislative intent regarding the bill.  At all times, the goals have been to: (1) make the ABLE accounts widespread throughout the country and accessible; (2) keep the administrative costs down; and (3) minimize all burdens, whether reporting or other, on beneficiaries.  Our official comments, which we previously submitted, were developed with these three goals in mind.

Highlights of NDSS Comments

Our comments are detailed in our written submission, and our board member Sara Wolff will testify shortly to lend a personal perspective to them.  We would like to highlight a few areas though:

Signature Authority for Designated Beneficiary

We have requested that the IRS consider expanding the scope of the individuals eligible for signature authority to include a single designee of the parent or legal guardian.  There are many adults with Down syndrome who live semi-independently but look to trusted friends or family members to help with their finances.  They should be able to transfer authority over their ABLE account to such a support person of their (or their guardian’s) choosing.  We have limited our request to a “single designee” to minimize the possibility of abuse of this provision and “too many hands” on the ABLE funds.

Self-Certification for Eligibility, One ABLE Account and Qualified Disability Expenses 

We urge the IRS to allow self-certification under penalty of perjury for eligibility, single ABLE account ownership, and qualified disability expenses, and to consider such self-certification as the necessary “safeguard” requested in the proposed regulations.  Under this model, similar to health savings account, beneficiaries would maintain their own qualifying paperwork and receipts, and be ready to produce them if audited to prove their eligibility to be a qualified beneficiary and their proper use of ABLE funds for qualified disability expenses.  Additionally, we request that the IRS develop a consistent eligibility certification form to minimize confusion among potential beneficiaries, financial institutions, and health care providers who are making eligibility determinations. This approach would also minimize the paperwork burden on program administrators, which will keep costs down.  We have confidence that people with Down syndrome, along with any necessary supports, will be able to self-certify and maintain the requisite documentation.


Finally, we would urge you to provide for an exception to the annual certification requirement in the case of conditions like Down syndrome, which will not disappear or improve.  Imposing yearly certification requirements will just increase the burden on beneficiaries with lifelong conditions, so we had suggested extending recertification to five year increments.  As it would be impossible to develop a comprehensive list of such conditions, we have requested that you leave this determination in the hands of the health care providers.   

Conclusion and Request for Interim Guidance

In conclusion, we would like to take a moment to thank the Department of Treasury for being so open to discussions with the disability community and other stakeholders throughout the regulations process.  While IRS finalizes the proposed regulations, we request that the IRS issue interim guidance on the issues mentioned above.  Although we are aware that the IRS will provide transition relief to states who develop programs that do not fully comply with final regulations, we are hearing from the state ABLE administrators that such interim guidance would enhance the pace of ABLE program development and, ultimately, lead to ABLE accounts becoming available sooner.   After nearly ten years of advocating for this savings mechanism for people with disabilities and their families, we don’t want to wait any longer.

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