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Update Dec. 17, 2014: On Tuesday, the Senate passed the ABLE Act, two weeks after the House of Representatives did the same, with stunning bipartisan support. The legislation will have an extraordinary impact on Americans with disabilities, allowing them to save their own money to pay for health care costs, education, housing and other needs without forfeiting their eligibility for Medicaid and other government programs.
In September, we profiled one of the bill's chief advocates, Sara Wolff. She has Down syndrome, and was on a passionate mission to convince lawmakers that her condition shouldn't legally oblige her to be poor. Watch her story Wednesday at 9 p.m. ET on Al Jazeera America.
MOSCOW, Pa. – Sara Wolff works for a law firm, sits on the board of directors for several advocacy organizations and is a gifted public speaker. But due to a federal regulation, she’s prohibited from doing something almost every other American has the right to do: save for her future.
That’s because Wolff has Down syndrome and, like millions born with a disability, she receives Supplemental Security Income to help pay her living expenses. In order to meet SSI eligibility requirements, she isn't allowed to earn more than $700 a month or have more than $2,000 in savings.
If Wolff, a law clerk, worked full time or got a raise, she’d lose her disability benefits and health insurance. In short, she and everyone else with a disability in the United States who receives SSI is legally obliged to be poor.
But since childhood, Wolff, 31, has been known for fighting for her rights. Now, she's on a mission to have Congress change this longstanding regulation that affects millions of people with disabilities, and she's attracting strong support for her efforts to help people with disabilities save for their futures.
An advocate is born
Dennis Wolff and his wife have always been committed to helping their daughter succeed – and that advocacy rubbed off. At the age of 18, Sara Wolff became an advocate too.
"As a senior in high school, she and a girlfriend of hers, they basically started the first Buddy Walk [in our area]," her sister Jennifer Motichka said. "A Buddy Walk is set up through the National Down Syndrome Society, and it's to promote awareness for Down syndrome and people with disabilities."
Wolff said she got the idea from her mom.
“We thought that 50 people would come and show up to show support,” she said.
Instead, more than 800 people participated. That’s when Wolff realized the power of being an activist for her own cause.
I learned I was an advocate for myself. ... And that's when I learned if I could do this for myself, I could do it for other people.
"I learned I was an advocate for myself," she said. "And that's when I learned if I could do this for myself, I could do it for other people."
In 2002, the National Down Syndrome Society honored Wolff alongside legendary journalist Barbara Walters.
"That was my very first public speaking engagement in front of an audience and I was not nervous," she said of her first time addressing a packed ballroom. "I don't know if people think that would be intimidating, because I think that if you just go up there and do your thing … it's the coolest feeling, just to see people's reaction.”
So how do people react?
"Just amazing," Wolff said with a laugh. "Like, they’re just, 'Wow! A person with Down syndrome could speak like that?'"
After high school, Wolff went to work for her godfather Todd O'Malley at his law firm, and she’s been there for 13 years. She makes minimum wage – less than $8 an hour.
"[She] helps a case manager with complex things, putting together settlement packages and everything," he said.
"She is a very talented young lady," said Don Broderick, the executive director. "She has a wonderful skill to be able to present to large groups of people [and] appears to be effortless."
Petitioning the government
But Wolff’s ability to rise up in her career and earn more money is stymied by the law, which would strip her of her SSI benefits and health insurance.
In July, she testified before a U.S. Senate committee in Washington, pressuring lawmakers to pass the Achieving a Better Life Experience (ABLE) Act, which would let people with a disability create tax-exempt savings accounts to help them pay for things like a home, higher education, transportation, job-hunting costs and health care – all without counting toward their income and savings limits (up to $100,000) or endangering their disability income or health insurance.
"I wanted to tell them that people with disabilities and different kinds of disabilities, and people with Down syndrome have the right to live on their own," Wolff said of her testimony.
Sara Hart Weir, a National Down Syndrome Society vice president, is at the forefront of the lobbying effort.
"It really sends a message to society and to our government, to Congress, that people with disabilities in 2014 can work," she said. "Specifically, like somebody like Sara Wolff could work full time, take her paycheck and deposit it in account without making herself ineligible for Medicaid."
The ABLE Act would also help people like Jerry Madusky, 55, who works as a handyman with Wolff at The Arc of Northeastern Pennsylvania.
"At times, he would make in excess of the $2,000 that's allowed for people to have," his boss Broderick said. "Rather than spend that money down to be able to get down to that $2,000 number, this'll allow him to put money aside for his future needs, whatever they may be."
The legislation also would mean more security for Wolff, a need that hit home last year when she lost her mother – her lifelong inspiration and support – to cancer.
"She helped me with schoolwork, helped me with social life, helped me with everything," Wolff said. "And my dad, as well. Because I wouldn't be here without them, really … It’s hard talking about my mom, but I kind of like talking about her, because it challenges me to do better."
Motichka, Wolff’s sister, said their mother’s death has made her worry about the day when their dad will be gone too.
"Financially, Sara needs to be able to support herself,” she said. “And it's really hard to do that when you're pretty much linked to poverty."
Wolff has travelled the country to raise awareness about the realities of living with Down syndrome and to drum up support for the ABLE Act. Her online petition urging support for the legislation has garnered more than 261,000 signatures.
Her efforts appear to be paying off. Even in a divided Congress, the ABLE Act has 380 sponsors in the House and 74 in the Senate. In July, the House Ways and Means Committee passed the bill unanimously. It could become law as soon as this month.
"I think millions of people with disabilities will benefit from this," Weir said. "The ABLE Act will allow those families to have this additional safety net to save for the future rather than being dependent on Medicaid and Social Security for everything. The ABLE Act allows them to create this tool where they can actually fund their own dreams, aspirations and goals and make sure that they … contribute to society in ways that they wish."
Wolff said she wants to take more control of her own future, in the ways that other Americans have always been able to do.
"I want people to know that I'm just like you," Wolff said. "I could do whatever I put my mind and heart to."