President Obama Signed the ABLE Act into Law – A Victory for the Down Syndrome Community
By Sara Hart Weir, MS, President, National Down Syndrome Society (NDSS)
NDSS Advocates Celebrate the House Passage of the Landmark ABLE Act
After eight long fought years, the Achieving a Better Life Experience (ABLE) Act, now known as the Stephen Beck Jr. ABLE Act, is the law of the land. On Friday, President Barack Obama signed the ABLE Act into law as part of the end of the year Tax Extenders Package. The passage of the landmark ABLE Act will go down in the history books as one of the most successful bipartisan, bicameral advocacy campaigns. As the largest nonprofit in the US dedicated to advocating for people with Down syndrome and their families, the ABLE Act was the National Down Syndrome Society’s (NDSS) number one legislative priority.
Many, many individuals and organizations played a vital role in getting the ABLE Act across the finish line. NDSS wants to personally thank the following:
- Our NDSS DS-Ambassadors, self-advocates, and advocates who madephone calls, sent emails, posted and tweeted, and made countless trips to our NDSS Buddy Walk® on Washington – those personal stories resonated with law makers on Capitol Hill and made all the difference
- Our unwavering Congressional Champions - Senator Robert Casey Jr. (D-PA), Senator Richard Burr (R-NC), Congressman Ander Crenshaw (R-FL), Congressman Chris Van Hollen (D-MD), Congresswoman Cathy McMorris Rodgers (R-WA), and Congressman Pete Sessions (R-TX) along with the Leadership of the US Senate and US House of Representatives, especially Majority Leader Harry Reid (D-NV) and Minority Leader Mitch McConnell (R-KY) and Speaker John Boehner (R-OH), Leader Kevin McCarthy (R-CA), Whip Steve Scalise (R-LA), and Minority Leader Nancy Pelosi (D-CA)
- The most dedicated and finest Congressional staffers you’ll ever meet – Jennifer McCloskey, Natasha Hickman, Jennifer Debes, Bill Parsons, Kim Betz, Nick Magallanes, and Towner French – and so many more Committee staffers from the US Senate Finance Committee and US House Ways & Means Committee
- The over 480 Members of Congress that bestowed their cosponsorship to the ABLE Act – 78 US Senators and 381 US Representative made history by cosponsoring the bipartisan ABLE Act
- Our wonderful allies from other national disability organizations thatsupported the ABLE Act, especially our friends at Autism Speaks (Stuart Spielman and Kevin Roy)
- Our dedicated and committed NDSS Board of Directors and staff, especially our late Vice Chairman Steve Beck, our Chairman Rob Taishoff, and our Former Chairman and Board Member Chip Gerhardt
- Our friends at Change.org, who supported Sara Wolff and her petition calling on Congress to Pass the ABLE Act. Sara’s petition garnered more than 265,000 signatures and served as the impetus for Sara Wolff sharing her own personal story about how the ABLE Act will change her life
The ABLE Act is the true essence of “How a Bill Becomes a Law”. The ABLE Act grew out of an idea from several parents from the Down Syndrome Association of Northern Virginia around a kitchen table, who identified the inequities and injustice that existed in the system as it relates to the ability for individuals with disabilities and their families to save for the future. Several of these advocates were instrumental in bring the idea of ABLE into an actual piece of legislation.
After many years of advocacy, the momentum behind the ABLE Act intensified this year. On July 23, 2014, the Senate Finance Subcommittee on Taxation and IRS Oversight held a Congressional hearing entitled, Saving for an Uncertain Future: How the ABLE Act can Help People with Disabilities and their Families, where NDSS Board Member and Self-Advocate Sara Wolff testified. On July 31st, the House Ways and Means Committee unanimously passed the ABLE Act out of Committee.
This month, the House of Representatives passed the ABLE Act 404-17 onDecember 3, 2014. On December 16, the Senate passed the ABLE Act as part of the Tax Extenders Package. And just Friday, President Obama declared the Stephen Beck Jr. ABLE Act the law of the land, by signing it into law.
NDSS wants to sincerely thank everyone for their tireless advocacy efforts and dedication to the ABLE Act. The passage of the ABLE Act was a huge team effort and victory on behalf of all people with Down syndrome and other disabilities.
Your support of NDSS helps us continue our mission to be the national advocate for the value, acceptance and inclusion of people with Down syndrome. Whether it is the NDSS Your Way campaign, attending a local Buddy Walk® or a general donation, every bit helps us to thrive as the human rights organization for the Down syndrome community.
10 Things You Need to Know About the ABLE Act
1. What is an ABLE account?
ABLE Accounts, which are tax-advantaged savings accounts for individuals with disabilities and their families, will be created as a result of the passage of the ABLE Act of 2014. Income earned by the accounts would not be taxed. Contributions to the account made by any person (the account beneficiary, family and friends) would not be tax deductible.
2. Why the need for ABLE accounts?
Millions of individuals with disabilities and their families depend on a wide variety of public benefits for income, health care and food and housing assistance. Eligibility for these public benefits (SSI, SNAP, Medicaid) require meeting a means or resource test that limits eligibility to individuals to report more than $2,000 in cash savings, retirement funds and other items of significant value. To remain eligible for these public benefits, an individual must remain poor. For the first time in public policy, the ABLE Act recognizes the extra and significant costs of living with a disability. These include costs, related to raising a child with significant disabilities or a working age adult with disabilities, for accessible housing and transportation, personal assistance services, assistive technology and health care not covered by insurance, Medicaid or Medicare.
For the first time, eligible individuals and families will be allowed to establish ABLE savings accounts that will not affect their eligibility for SSI, Medicaid and other public benefits. The legislation explains further that an ABLE account will, with private savings, "secure funding for disability-related expenses on behalf of designated beneficiaries with disabilities that will supplement, but not supplant, benefits provided through private insurance, Medicaid, SSI, the beneficiary's employment and other sources."
3. Am I eligible for an ABLE account?
Passage of legislation is a result of a series of compromises. The final version of the ABLE Act limits eligibility to individuals with significant disabilities with an age of onset of disability before turning 26 years of age. If you meet this criteria and are also receiving benefits already under SSI and/or SSDI, you are automatically eligible to establish an ABLE account. If you are not a recipient of SSI and/or SSDI, but still meet the age of onset disability requirement, you would still be eligible to open an ABLE account if you meet SSI criteria regarding significant functional limitations. The regulations to be written in 2015 by the Treasury Department will have to explain further the standard of proof and required medical documentation. You need not be under the age of 26 to be eligible for an ABLE account. You could be over the age of 26, but must have the documentation of disability that indicates age of onset before the age of 26.
4. Are there limits to how much money can be put in an ABLE account?
The total annual contributions by all participating individuals, including family and friends, is $14,000. The amount will be adjusted annually for inflation. Under current tax law, $14,000 is the maximum amount that individuals can make as a gift to someone else and not pay taxes (gift tax exclusion). The total limit over time that could be made to an ABLE account will be subject to the individual state and their limit for education-related 529 savings accounts. Many states have set this limit at more than $300,000 per plan. However, for individuals with disabilities who are recipients of SSI and Medicaid, the ABLE Act sets some further limitations. The first $100,000 in ABLE accounts would be exempted from the SSI $2,000 individual resource limit. If and when an ABLE account exceeds $100,000, the beneficiary would be suspended from eligibility for SSI benefits and no longer receive that monthly income. However, the beneficiary would continue to be eligible for Medicaid. States would be able to recoup some expenses through Medicaid upon the death of the beneficiary.
5. Which expenses are allowed by ABLE accounts?
A "qualified disability expense" means any expense related to the designated beneficiary as a result of living a life with disabilities. These include education, housing, transportation, employment training and support, assistive technology, personal support services, health care expenses, financial management and administrative services and other expenses which will be further described in regulations to be developed in 2015 by the Treasury Department.
6. Where do I go to open an ABLE account?
Each state is responsible for establishing and operating an ABLE program. If a state should choose not to establish its own program, the state may choose to contract with another state to still offer its eligible individuals with significant disabilities the opportunity to open an ABLE account.
After President Obama signs the ABLE Act, the Secretary of the Department of Treasury will begin to develop regulations that will guide the states in terms of a) the information required to be presented to open an ABLE account; b) the documentation needed to meet the requirements of ABLE account eligibility for a person with a disability; and c) the definition details of "qualified disability expenses" and the documentation that will be needed for tax reporting.
No accounts can be established until the regulations are finalized following a public comment period on proposed rules for program implementation. States will begin to accept applications to establish ABLE accounts before the end of 2015.
7. Can I have more than one ABLE account?
No. The ABLE Act limits the opportunity to one ABLE account per eligible individual.
8. Will states offer options to invest the savings contributed to an ABLE account?
Like state 529 college savings plans, states are likely to offer qualified individuals and families multiple options to establish ABLE accounts with varied investment strategies. Each individual and family will need to project possible future needs and costs over time, and to assess their risk tolerance for possible future investment strategies to grow their savings. Account contributors or designated beneficiaries are limited, by the ABLE Act, to change the way their money is invested in the account up to two times per year.
9. How many eligible individuals and families might benefit from establishing an ABLE account?
There are 58 million individuals with disabilities in the United States. To meet the definition of significant disability required by the legislation to be eligible to establish an ABLE account, the conservative number would be approximately 10 percent of the larger group, or 5.8 million individuals and families. Further analysis is needed to understand more fully the size of this market and more about their needs for new savings and investment products.
10. How is an ABLE account different than a special needs or pooled trust?
An ABLE Account will provide more choice and control for the beneficiary and family. Cost of establishing an account will be considerably less than either a Special Needs Trust (SNT) or Pooled Income Trust. With an ABLE account, account owners will have the ability to control their funds and, if circumstances change, still have other options available to them. Determining which option is the most appropriate will depend upon individual circumstances. For many families, the ABLE account will be a significant and viable option in addition to, rather than instead of, a Trust program.
See more at: http://www.ndss.org/Advocacy/Legislative-Agenda/Creating-an-Economic-Future-for-Individuals-with-Down-Syndrome/Achieving-a-Better-of-Life-Experience-ABLE-Act/#sthash.Mv3kpefg.dpuf
You Can Learn More About the ABLE Act in Our NDSS Monthly Webinar Series
On Tuesday, February 3 at 1:00PM Eastern Time, as we discuss implications for the Down syndrome community and what we all need to know now that the ABLE Act is law. You can register here.
Sara Hart Weir, President, NDSS
Catherine Beck, Advocate and Wife of Late NDSS Vice Chairman, Stephen Beck Jr.
Chip Gerhardt, Board Member and Chair of the NDSS National Government Affairs Committee