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JOAN VENNOCHI

A disabilities act, long in planning, is finally law

Before leaving for Christmas vacation, President Obama signed a law that allows people with disabilities to open tax-free savings accounts to pay for certain life expenses.

That’s a big deal. Until now, people with disabilities couldn’t do what the rest of us can — set aside money, safe from the IRS, for certain purposes. Before this law, money saved outside a trust account disqualified those with disabilities from Medicaid-based benefits and Social Security.

The Achieving a Better Life Experience, or “ABLE” Act, dramatically changes that, said Representive Ander Crenshaw, the Florida Republican who fought for it. Its overwhelming passage in the House and Senate shows some causes ultimately defy partisan warfare. The vote was 404-17 in the House; and 76-16 in the Senate, where it was part of a larger tax credit extension bill.

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By allowing people with disabilities to save money for future needs, “You are touching the lives of a lot of Americans,” said Crenshaw. “You can save money to go to college or to retire, but they couldn’t save money to use for disability expenditures.... It was forced impoverishment.”

The saga of the ABLE Act also shows grassroots movements can achieve change — but it can take years to happen. The disability community is easy to overlook and causes languish without relentless lobbying and the right mix of political support.

According to the Washington Post, Rick Hodges of Arlington, Virginia, came up with the idea eight years ago, as a way to overcome obstacles to saving money for a daughter with Down syndrome. He brought it to the Down Syndrome Association of Northern Virginia. At the time, one member’s neighbor was John Ariale, then Crenshaw’s chief of staff. He took it up with his boss and in 2006, Crenshaw filed the first version of the bill and kept pushing for it.

As the Post also reported, Steve Beck of Fairfax County, who also had a daughter with Down syndrome, led the fight for the legislation and personally brought at least 50 of the bill’s co-sponsors on board. Beck died unexpectedly five days after the House passed the ABLE Act and in his honor, his name was added to the bill.

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Bay Staters may have helped plant the seeds, according to James Brett, president and CEO of the New England Council and member of the President’s Committee for People with Intellectual Disabilities. In 2003, said Brett, members of the Governor’s Commission on Intellectual Disabilities — including John Nadworny, a financial planner (and friend of mine), Dafna Kronk-Gordon, Don Freedman, and Barbara Mazzela — worked on a tax-free savings plan proposal that Brett presented to The President’s Committee. It was included in its 2004 report, Representatives from the Down Syndrome Assn. of Northern Va. participated in a roundtable in which Brett played a role, recalled Madeleine Will, who also served on the President’s Committee. “The trail gets murky after that,” said Will.

Finally this year, the concept became law. “It’s not that people were opposed,” said Brett, of his initial lobbying for it. “You need champions.”

The Down Syndrome Association of Northern Virginia had more than a mention in a report. It had a champion in Crenshaw. That plus support from families and organizations across the country created enough momentum to win passage in the House and then the Senate. Crenshaw credits Senator Robert P. Casey, a Democrat from Pennsylvania, for embracing the proposal.

This was a rare case, said Crenshaw, of “Democrats and Republicans, the House and Senate, all coming together.” As far as its origins, Crenshaw paraphrases Ronald Reagan: “There’s no limit with what you can accomplish, as long as you don’t care about who gets the credit.” Concerning the time it took, he said, any tax code changes are challenging, but “if it’s important and it’s the right thing to do, it’s worth pushing.”

The ABLE Act has its limitations. If a savings account balance exceeds $100,000, for example, there will be an offset for an individual’s SSI check. It mostly helps people who have money to save, tax policy analyst Howard Gleckman pointed out.

But still, it accomplishes an important goal. It allows people with disabilities to save money to achieve the best life possible, just like anyone else.

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Joan Vennochi can be reached at vennochi@globe.com. Follow her on Twitter @Joan_Vennochi.