Courtney Williams tells her daughter Maddie's grandparents not to bother writing birthday checks out in Maddie's name. If the 4-year-old has more than about $2,000 in assets, she will lose eligibility for the Medicaid services so valuable for a child with Down syndrome.
The Williams family of Point Breeze joined U.S. Sen. Bob Casey, D-Pa., and state Rep. Dan Miller, D-Mt. Lebanon, at Achieva in the Strip District Thursday to call for passage of The ABLE Act, which would allow for tax-free savings for expenses related to disability care.
Money in the accounts, which would function similarly to 529 accounts for higher education, could be used for expenses such as education, housing and health care.
"We allow people, and have put into law, the ability to save for retirement and higher education, but not the ability to save for a disability," said Mr. Casey, who introduced the bill in the Senate. "That's just plain wrong."
The bill was introduced by Mr. Casey in the last session of Congress but was not brought up for a floor vote. With increased lobbying this session by outside advocacy groups, such as the National Down Syndrome Society, Mr. Casey is hopeful the bill will pass by the end of next month.
The bill has the support of 70 senators and 359 members of the U.S. House, he said, and is currently being reviewed by the Congressional Budget Office.
Maddie, clad Thursday in a spring-like yellow dress and bright white shoes, receives occupational therapy, physical therapy and speech therapy covered by Medicaid. She attends preschool and takes a special-needs dance class -- expenses shouldered for now by her parents.
But Ms. Williams and her husband, Grant, worry about how Maddie will be provided for in the future.
"We don't know what she's going to want to do," Ms. Williams said. "But when unexpected things happen, we would like to be prepared." Currently, she said, the family worries that Maddie's brother, 6-year-old Aiden, will be faced down the line with paying for Maddie's expenses, because Maddie cannot have her own assets.
The savings accounts would be subject to the same financial constraints as traditional 529 accounts, with $13,000 allowed free of gift taxes.
ABLE accounts could be rolled over to traditional 529 accounts if the person is deemed to be no longer disabled or could be rolled to a family member's 529 plan.
Qualified expenses for which taxes can be withdrawn tax-free include education, such as tuition for preschool through higher education, housing, transportation, such as mass transit or purchase of vehicles, employment support and health prevention and wellness.
To be eligible for an ABLE account, individuals must receive supplemental Social Security income benefits or disability benefits or have other severe physical or mental impairments.
Anya Sostek: firstname.lastname@example.org or 412-263-1308.