Activists hail new savings account for parents of disabled children

By Gray Rohrer, Orlando Sentinel 

Kevin Thompson, executive director of ABLE United, and Jenn Sikora at Thursday news conference in Tallahassee

TALLAHASSEE – Jenn Sikora of Orlando was the first person in Florida to set up a tax-free savings account for her disabled child when the accounts first became available last week.

If she had first dibs, it’s because she helped bring about the change in the law that set up the accounts and allows the parents of disabled children to keep federal benefits while saving for their future.

Sikora, who grew up in Orlando, went to school in Virginia and has since returned, was part of a group that came up with the idea for the new accounts and push through Congress the change in federal tax laws that it required. It started with a group of parents at a kitchen table in Virginia ten years ago looking for ways to help their kids, she said.

“One of the dads had this wild idea that he should be able to save for his daughter with Down syndrome the same way he saved for his daughter without Down syndrome,” Sikora said during a press conference Thursday to hail the onset of the accounts.

Under the Achieving a Better Life Experience Act, or ABLE Act, the law allows the parents of disabled children to set aside funds in a tax-free savings account for their child’s education, housing and transportation.

Before the law was enacted, disabled individuals gave up looking for work or additional income sources to meet federal wealth requirements to receive safety net benefits like medical care and Supplemental Security Income payments.

“We didn’t even know what that future was going to look like. We didn’t know if our kids would go to college, if they would need help with housing or transportation or employment,” Sikora said.

Sikora, who worked as a legislative aide to former U.S. Rep. Bill McCollum, said her political connections came in handy to help educate lawmakers, even if it did take nearly a decade to pass. She reached out to a close friend who was chief of staff for U.S. Rep. Ander Crenshaw, R-Jacksonville, who sponsored the bill that became the ABLE Act.

Leading the charge at the state level was Senate President Andy Gardiner, R-Orlando, whose son, Andrew, has Down syndrome.

“If we are going to be a leader where we talk about everyone has the ability and the dream to succeed, we cannot let government limit that opportunity because of the benefits that they receive,” Gardiner said.

Gardiner, who is term-limited this year, fast tracked several initiatives during his two years leading the Senate aimed at helping disabled individuals and their parents. In addition to the ABLE Act, he increased funds for scholarships for disabled students (now known as Gardiner scholarships), got funding for a learning center at UCF and set up sources of information for new parents of disabled children.

“To be in a position where you can effect change, that’s pretty cool and it’s a good way to go out,” Gardiner said.

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