The family of a local advocate for individuals with Down syndrome is speaking out about his unexpected death and the amazing difference he made helping young people with disabilities nationwide save money for the future.
Before he passed away last month, Stephen Beck Jr. of Burke, Va., succeeded in getting the first piece of legislation affecting people with disabilities through Congress in 25 years.
Eight years ago, Beck sat down at his living room table with some other parents to brainstorm a plan to help their children, including his own daughter, Natalie -- now 15 years old. They wanted a way to help their children save for the future.
Natalie has Down syndrome and Beck was worried because federal law only allowed for $2,000 to be set aside for her long-term support.
"You cannot have more than $2,000 in name or assets or you lose your benefits," his widow Catherine Beck explains. "So individuals with challenges cannot save for their future. Their families can't invest in them to secure their future."
So Beck teamed up with other parents and advocates and championed to change the law. The outcome was the Achieving a Better Life Experience or ABLE Act. It allows individuals with disabilities to hold savings accounts much like 529 college savings plans.
Up to $14,000 a year can be put in an ABLE account, with a cap of $100,000, for expenses related to medical needs, education, housing and transportation, without jeopardizing important federal benefits like Social Security and Medicaid.
Beck was a businessman by trade, but as a self-trained, unpaid lobbyist, he pushed to make the ABLE Act a reality -- and lived to see the U.S. House of Representative pass it on December 3.
"He was so happy, he was moved to tears," Catherine recalls. "The whole gallery cheered when it happened."
"This is huge, not only from an empowerment perspective, to say that you can work and save money for the future, but it shows people's voices were heard in the nation's capital and on Capitol Hill," explained Sara Weir, president of the National Down Syndrome Society.
But Beck died unexpectedly just a few days later. While his family was still swallowed up in their grief, the U.S. Senate passed his vision and President Barack Obama signed it into law on December 19.
"He would have flown out of the chair and jumped for joy," Catherine says. "It was all ironic, the timing of everything, and I just wish that he was here."
They are still in shock over his death, but even amid overwhelming grief, Catherine says there is comfort knowing her husband's legacy will live on through this new legislation.
"I think it's a symbol for a father who made a change," she says. "A symbol of what our country represents -- that one person can make a difference. It's not so much the Steve Beck Bill, but a father who stood for what they believe should happen in our country."
The ABLE Act has since been named after Stephen Beck. There will be a signing ceremony at the White House likely sometime later this month and it will then be enacted in every state.
Accounts could begin to be available for families as early as this year, and Beck's daughter Natalie will be the first ABLE account beneficiary in the U.S.