Why you should care
People with developmental disabilities in America are leading longer, more active lives than ever before, but financial challenges are holding them back. A new bipartisan bill may help change that.
Sara Wolff speaks softly. I had to perk up my ears to hear her. But once she gets going, boy, she’s hard to stop.
The 31-year-old from Moscow, Pa. has been going for over a decade now — ever since getting up in front a packed house at the Waldorf-Astoria in New York in 2002 to accept a volunteerism award from the National Down Syndrome Society. Then a senior in high school, Wolff was recognized for helping organize her community’s first Buddy Walk, an annual event to promote acceptance of people with Down syndrome.
“I did really, really well,” Wolff says of her first speaking gig. Not one for false modesty.
The audience, which included media maven Barbara Walters, gave her a standing ovation.
Wolff’s inspiration is her late mother, who once brushed aside a psychiatrist who suggested kindergarten-age Sara wasn’t intelligent enough to attend regular school.
Since then, Wolff has crisscrossed the country and pounded the halls of Congress on a mission to raise awareness about the realities of living with Down syndrome, a genetic condition where people are born with extra chromosomal material, reducing their cognitive abilities. The impact on cognition runs the gamut of mild to severe; Wolff is clearly on the high-functioning end of the spectrum.
She calls her work “self-advocacy.” Lobbying, she says, has become a favorite hobby. She also holds down two jobs, as a law clerk at a Scranton, Pa., firm and in the advocacy office of a local nonprofit helping people with disabilities.
In Washington, D.C., plenty of well-heeled influence peddlers and their millions of dollars couldn’t pull off what Wolff looks poised to achieve this year: helping mobilize Congress to pass tax legislation in the hyperpartisan atmosphere of an election year.
The bill is the Achieving a Better Life Experience Act, or the ABLE Act. It would allow people with disabilities of all types — not just Down syndrome — and their families or caregivers to create tax-exempt savings accounts under the same rules parents use now to save for college education tax free.
Wolff’s become the face of the bill, visiting Capitol Hill roughly a dozen times and making other public appearances in person and in the media. She’s got drive, but also the human touch, a mix of no-nonsense directness and disarming humor.
Parents, meanwhile, would gain the peace of mind that their disabled children would be provided for, even if those children outlive them. That happens more frequently these days with modern health and medical advances. Sara is one example: She lost her mother last year to cancer. She lives at home with her father, relying on him for transportation and other needs.Wolff says the ABLE Act will make a big difference in her life, allowing her to work, save money and stay under the income limit to receive benefits like Medicaid. People with developmental disabilities like Sara are being increasingly integrated into the American workplace and education system — even as far as college, where an increasing number of universities are offering courses with them in mind. Advocates believe the law would help them take advantage of those opportunities.
It sounds like a feel-good policy both Democrats and Republicans could rally around, right? Well, it’s never that simple in Washington.
“Anytime you try and deal with the tax code, it’s just a giant undertaking,” says Congressman Ander Crenshaw, R-Fla., who first introduced a version of the legislation in 2006.
But Crenshaw — who became interested because of friend with a Down syndrome child — has kept pushing, gaining more support each session of Congress. In 2008, he was joined by Democrat Bob Casey, one of Wolff’s Pennsylvania senators, whom she has befriended and even interned for one summer.
Now the ABLE Act has 359 sponsors in the House and 71 in the Senate, including Democratic Majority Leader Harry Reid and Republican Minority Leader Mitch McConnell. Backers expect to vote on and pass the bill in the coming months.
”When you meet someone like Sara, if you’re not moved by what she’s trying to do and not inspired by her passion, then something’s wrong,” says Crenshaw.
In 2012, the National Down Syndrome Society launched an “ambassadors” program in which people with Down Syndrome or their family and friends from all 50 states were taught how to cultivate relationships with members of Congress and their staffs.
Wolff says her inspiration comes from her late mother, a woman who once brushed aside a school psychiatrist who suggested the kindergarten-age Sara wasn’t intelligent enough to attend regular elementary school.
Wolff now hopes the ABLE Act will help her save money to take college courses, particularly in media studies.
“I love creating stuff online,” she says. She’s got the knack: Her Change.org petition to pass the ABLE Act went viral this winter and has attracted nearly 250,000 supporters.
And she wants to continue speaking.
“It’s funny because when I’m home, I’m usually quiet,” says Wolff. “But when I’m speaking to a huge crowd, I’m a totally different person, I just could keep on talking forever.”
Wolff told one such crowd in January she plans to be “standing right next to President Obama when he signs the ABLE Act into law this year.” Looks likely to happen.