By Rose Hoban
Thomas Beckmann was talkative, going on about boating with his brother and father on Falls Lake last Sunday during thunderstorms. Then he started describing another time they ran the boat up onto a sandbar off the coast.
His mother, Donna, said the 14-year-old was more excited and animated than usual. Perhaps he was feeling the excitement from his mother and the others around him.
Thomas has Downs Syndrome. And he was with his mom at the legislature Tuesday as a bill that will help him cleared its last hurdle before heading to the Senate floor for a final vote Wednesday.
Donna Beckmann said she was thrilled.
The ABLE Act bill will help families like the Beckmanns save for their children’s future needs without jeopardizing social service benefits. The bill allows for families to save up to $100,000 in a special 529 account. Similar to college savings accounts, the money will be exempted from means testing when Thomas goes to apply for Medicaid and other entitlements as he gets older.
When Thomas’ brother was born, Donna Beckmann said, they opened up an account for him.
“But then when Thomas was born,” she said, “he wasn’t allowed to have assets, because it would jeopardize his services, not that we qualify for services. But we just knew that some day, after he’s 18, we’re not supposed to have things in his name.”
The bill, introduced this spring in the House and the Senate, has wound its way slowly through the process, picking up support along the way.
When it made it to the Senate Finance Committee Tuesday, Rep. Marilyn Avila (R-Raleigh), who was presenting the bill, was barely able to finish her presentation before senators were making motions for it’s passage.
“For families to be able to save as early as they possibly can for a future for a child with a disability, it relieves their stress, relieves their anxieties,” said Avila, who sponsored the House version of the bill. “And it does make things financially more affordable and sustainable for them.”
Federal and state
The ABLE Act (short for Achieving a Better Life Experience) allows states to create the plans in the wake of passage of the federal ABLE Act, which passed in 2014. North Carolina’s Sen. Richard Burr was one of the sponsors of the federal bill, and 27 other states have passed their own versions of the ABLE Act to conform with the federal legislation.[pullquote_right] Did you know NC Health News is a non-profit? Last year, a third of our funding came from readers. Please consider a donation today![/pullquote_right]Lobbyist Julia Adams from the Arc of North Carolina said the federal rules are currently in a public comment period, but once those rules get finalized North Carolina will be ready to go.
“The IRS was very clear that they wanted states to get moving,” Adams said. “A lot of states are going ahead and hiring the personnel to oversee it through whichever department, and starting the creation of the acts and codifying it to the federal regulations once they’re published.”
Contributions to 529 plans can be deducted from federal taxes. But in the wake of the tax reform passed by the General Assembly in 2013, North Carolinians can no longer deduct contributions from their state taxes.
Senate sponsor Tamara Barringer (R-Cary) said she’d like to see that change, but not this year.
“One never knows,” Barringer said. “For right now, this is a very good start.
“The incentive should be there because we want people to save,” Avila said. “But in the current environment, it’s not something to be brought up at the moment.”
Donna Beckman said the money is a good thing. But for her, passage of the bill had a deeper meaning.
“Thomas wants to have purpose,” she said. “He sees everyone else going off and doing things, why should he not be able to do that?”
Right now, if Thomas got a job, earning and saving would disqualify him from benefits such as Medicaid and supportive housing, even as he would probably not earn enough to pay for insurance and housing on his own. But with a 529 plan, some of his earnings could be placed into the account to use for things such as education or transportation or buying a new refrigerator.
For Donna Beckmann, the greatest significance of the bill is that it will allow Thomas to contribute to saving for his own future.
“He wants to contribute to society,” Donna Beckmann said. “He’s stealing his brother’s chores because he wants to do like everyone else does.”
“There’s that piece that it gives him value of his own being,” she said. “And then there’s that peace of mind that as a family we can plan and prepare for him.”