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| Sara Wolff (center) is calling on Congress to allow disabled Americans to save and still receive benefits like Social Security Disability Insurance payments and Medicaid. |
Many families struggle with planning for the future of a child with severe disabilities. While they are able to save for the educational needs of their other children through “529” college tuition plans, these plans do not fit well the needs of a child with severe disabilities. The disabled child may, now, or in adulthood, need the long term services and supports of the Medicaid program and/or the income assistance of the Supplemental Security Income (SSI) program. Since the child may live for many decades beyond the ability of the parents to supplement the services they receive through Medicaid, most parents recognize the need for saving and securing funds for the child. Others want to ensure the financial security of a disabled child who has a level of disability required for Medicaid eligibility, but for now, is managing to function without the use of those benefits. Still others want to ensure that their family member can exercise control over the funds in the account without endangering the Medicaid and SSI benefits on which they may rely.
Although Supplemental Needs Trusts and/or Wholly Discretionary Trusts for Special Needs offer a savings solution, many families have found it too expensive to establish a trust which meets the requirements of the Medicaid and SSI programs. While many attorneys will prepare these for reduced fees for those in need, it is not uncommon to pay five to ten thousand dollars for these solutions. The ABLE Act (S.313 / H.R.647) would give individuals with disabilities and their families access to accounts that would allow individual choice and control while protecting eligibility for Medicaid, SSI, and other important federal benefits for people with disabilities.
The Senate Finance subcommittee on taxation and IRS oversight may have never heard testimony from someone quite like Sara Wolff. Ms. Wolff, 31, was born with Down syndrome, but that hasn’t stopped her from becoming involved in politics. She testified before the subcommittee on the Achieving a Better Life Experience (ABLE) Act, which would create tax-free savings accounts for those with disabilities. Earlier this year, she wrote a change.org petition calling on Congress to pass the ABLE Act. The petition garnered more than 250,000 online signatures.
“Just because I have Down syndrome, that shouldn’t hold me back from achieving my full potential in life,” Ms. Wolff of Moscow, Pa., said in a statement. “I can work a full-time job, be a productive member of society, and pay taxes – but because of outdated laws placed on individuals with disabilities, we hold people like me back in life.”
Ms Wolf is also a board member of the National Down Syndrome Society (NDSS), which is championing the bipartisan legislation. The Senate bill is sponsored by Sen. Robert Casey, Pennsylvania Democrat, and Sen. Richard Burr, North Carolina Republican. Support for the House bill is being led by Rep. Ander Crenshaw, Florida Republican; Rep. Cathy McMorris Rodgers, Washington Republican; Rep. Pete Sessions, Texas Republican; and Rep. Chris Van Hollen, Maryland Democrat.
“The bill aims to ease financial strains faced by individuals with disabilities by making tax-free savings accounts available to cover qualified expenses such as education, housing and transportation,” said an NDSS statement.
Ms. McMorris Rodgers, whose seven-year-old son Cole has Down syndrome, called on Congress to “advance this crucial legislation.” “As the mom of a son with Down syndrome, I see firsthand how federal policies limit—not expand— opportunities for those with disabilities. And the ABLE Act will change that,” said Ms. McMorris Rodgers in a statement. “It will make sure that Cole — and the millions like him who have special needs — will be able to save for their futures and reach their full potential.”
The ABLE Act has 74 Senate co-sponsors, including Senate Majority Leader Harry Reid and GOP Minority Leader Mitch McConnell. “Passing this landmark legislation will go a long way to help people with Down syndrome and other disabilities realize and achieve their own hopes, dreams and aspirations,” NDSS Vice President of Advocacy and Affiliate Relations Sara Hart Weir said in a statement.
Members of the U.S. Senate said Friday, September 26th, that they have an agreement that will allow the Achieving a Better Life Experience, or ABLE, Act to proceed to the full Congress. The bill’s chief sponsors and leaders of the Senate’s Committee on Finance said in a joint statement that they expect the legislation to be considered when Congress returns to Washington in November.
Under the measure, people with disabilities would be able to create special accounts at any financial institution where they could deposit up to $14,000 annually. The ABLE accounts could accrue up to $100,000 in savings without risking an individual’s eligibility for government benefits like Social Security. What’s more, Medicaid coverage could be retained no matter how much money is deposited in the proposed accounts.
Modeled after the popular 529 college savings plans, funds deposited in ABLE accounts could be used to pay for education, health care, transportation, housing and other expenses. Interest earned on savings within the accounts would be tax-free.
The ABLE Act has been under consideration in Congress since 2006. It is time that this proposal was enacted into law.
If you want to follow this legislation, Autism Speaks will do that for you by clicking here.
The National Disability Institute has useful information here.
You can sign Sara's petition here.
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