The mission of offering Americans with disabilities an enhanced chance for more independence has accomplished the nearly impossible – garnering overwhelming bipartisan congressional support for a bill.
President Barack Obama signed into law Dec. 19 the ABLE (Achieving a Better Life Experience) Act, which drew the support of more than 400 House and 76 Senate members. U.S. Sen. Richard Burr, R-N.C., was a co-sponsor of the Senate version, along with U.S. Sen. Bob Casey Jr., D-Pa.
The act took eight years to clear Congress. About 5.8 million Americans are projected to be eligible for the benefits.
The act enables families with disabled children to save for their child’s long-term disability expenses through a 529 tax-exempt investment plan similar to those for college education expenses. The 529A accounts are available to families whose child was diagnosed with a qualified disability before age 26.
The law also allows people with disabilities to save up to $100,000 – compared with just $2,000 previously – without risking their eligibility for Social Security, Medicaid and other government programs. There would be an annual $14,000 contribution or gift limit.
The money can be used to pay for education, health care, housing, transportation, legal and other expenses.
The next step is getting the Internal Revenue Service and U.S. Treasury to issue regulations for the accounts.
“Families of severely disabled children came to the senators expressing the critical need for an easier way to save and prepare for their child’s future expenses, especially since many Americans with Down syndrome and autism are now outliving their parents,” said Rachel Hicks, Burr’s press secretary.
States are not required to participate in establishing 529A accounts, but for those that do, families would have a range of investment options similar to the 529 college-education savings accounts.
Accounts have to be created in the state in which the disabled individual lives, or in a state that has a memorandum of understanding with another state in providing 529A accounts.
Hicks said Burr hopes that North Carolina “will be a leader in this process” in terms of establishing, implementing and ensuring access to ABLE accounts.
Among the local advocates for the act have been Bill Donohue and Deborah Woolard, parents of Jeremy Donohue, age 30, who has a very rare disease combination of FSH (facioscapulohumeral) muscular dystrophy and Down syndrome.
“The ABLE Act is a gift to our community,” Bill Donohue said. “It allows those with a disability a more even playing field.
“No longer will this segment of our society be proscribed a life of poverty, limiting their total assets to $2,000.”
Jeremy Donohue leads an active work-play-learn lifestyle in his 5-foot-4-inch, 140-pound body.
He is a national karate champion, five-sport Special Olympian – basketball, bocce, bowling, golf and swimming – award-winning thespian, a 2011 graduate of UNC Greensboro’s Beyond Academics program, active fund-raiser, community theater actor, book-club member and churchgoer.
Jeremy has done all this while holding down a part-time job at the Kimono’s restaurant off Country Club Road.
Bill Donohue shared his thoughts on how the act could benefit Jeremy to demonstrate how far it could reach locally and nationally.
“Jeremy could move to a slightly more expensive apartment that would offer the safety of an electric oven over a gas stove,” Bill Donohue said. “An even better option would be saving for a condo where safety products (SimplyHome) could be installed that would allow for increased independence and less supervision.
“He could purchase transportation services through programs like Uber to attend community events. He might be able to travel to visit his sisters who live out of state.
“Those things will become even more important when we are no longer able to provide them.”
Donohue acknowledges there are political hurdles to clear in the General Assembly.
“The legislature will debate its ability to recoup some tax losses through garnishing money left in the beneficiary’s account on passing,” Donohue said. “My optimistic side believes Sen. Burr can show them the light to a speedy resolution.”
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