When his daughter Audrey was 4 years old, Rick Hodges went to a financial planning seminar — “like a dutiful dad,” he recalled. But he knew immediately it was of no help.
“All these plans are designed for people with normal lives,” the Arlington father said. “First they grow up, then they go to college, then they support themselves, then they retire. And that was probably not going to be Audrey’s life.” His daughter has Down syndrome.
Amid all the uncertainty about her future, Hodges said, is the certainty that she will need financial support.
“I thought, there needs to be a special plan for people with disabilities, something that has more flexibility,” he said.
Soon, there will be, thanks in large part to a group of Northern Virginia parents who heard the issue Hodges raised. At a time of widespread complaints about Washington gridlock, the Achieving a Better Life Experience (ABLE) Act won approval this month in the House on an overwhelming bipartisan vote. Final action was pending Saturday in the Senate. Enactment of the bill would be a milestone reflecting growing public acceptance and understanding of intellectual disabilities.
Under the act, a disabled person can have a tax-advantaged savings account worth up to $100,000 without losing any federal benefits. The money can include friend and family contributions as well as what the disabled person earns. Withdrawals would not be taxed if used for education, housing, health care or other life-long expenses not covered by Medicaid and federal disability benefits.
The bill “puts a stake in the ground that people with Down syndrome and other communities can work and save money for their future,” said Sara Hart Weir, interim president of the National Down Syndrome Society.
The ambitious bill got its start around a kitchen table about a decade ago, as parents in the Down Syndrome Association of Northern Virginia listened to Hodges’s idea and wondered: Why couldn’t we do this?
The group had some advantages that other grass-roots activists might not. Many had connections to Capitol Hill. One member’s neighbor John Ariale at the time was chief of staff for Rep. Ander Crenshaw (R-Fla.). Ariale set up a meeting with the congressman. Crenshaw authored the first version of the bill in 2006.
Rep. Chris Van Hollen (D-Md.), who has long been active on disability issues, was an influential early co-sponsor.
But it was another father from the Down syndrome group who became the most forceful advocate. Steve Beck, of Fairfax County, a practical, conservative executive in an electric supply company with no previous legislative experience, was driven by a desire to do something for his daughter Natalie.
“Attached to Natalie doesn’t begin to describe it; attached at the hip, maybe. She meant everything to him,” said Philip Pedlikin, of Fairfax County, another group member, who hosted the meeting that sparked the bill.
Beck watched the House pass the ABLE Act on Dec. 3 on a vote of 404 to 17. Five days later, he died unexpectedly. His name has since been added to the bill.
“I was in the House gallery with him . . . when this passed, and just saw the tears in his eyes and the excitement,” Weir said.
Beck was the only one of the original parents who remained a leader in the long legislative fight through to the end, becoming in essence a self-taught lobbyist. He went to every news conference in Washington related to the campaign and traveled around the country to meet with local disability groups. When they first met Crenshaw, Pedlikin said, Beck “was so nervous” that he stayed silent the entire time. By the time of the House vote, his booming voice was familiar on the Hill. Crenshaw estimated in a news conference Thursday that Beck had personally converted at least 50 of the bill’s co-sponsors.
Other advocates credit Beck with powerfully conveying both the personal stories behind the bill and its national importance. Under the bill, millions of disabled people and their families would be more capable of saving for the future.
“I’m glad that he got to see what he accomplished in that House vote,” Hodges said. “He was really the force behind it like nobody else.”
Allowing recipients of federal disability benefits to hold significant assets in their own names is a radical change. Some congressional aides questioned why people receiving those benefits would need savings. On the left, some advocates argued that the accounts would help only wealthier families. Even many disabilities groups were skeptical. Major legislation of any kind to help people with Down syndrome and other disabilities had been scarce since the Americans with Disabilities Act took effect in 1990 during the presidency of George H.W. Bush.
“There’s never been anything like this,” said Allison Wohl, executive director of a disability advocacy network. “There’s always been this assumption that people that are on ‘welfare,’ you can’t have assets.”
That notion, Wohl and others say, is outdated in a world where people with intellectual disabilities are no longer being shuttled off to institutions to live brief and conscripted lives. The average life expectancy for a person with Down syndrome has risen from 25 in 1983 to 60 today, according to the society. Many can work and want to do so. But the cost of support remains immense, especially as parents confront the increasing likelihood that their children will outlive them.
“You have to be poor or pretend to be poor,” said Hodges. Setting up a special-needs trust is expensive and complicated. The ABLE Act would use a much simpler approach, expanding on the 529 savings plan mechanism that families use for college.
“I just remember all of their faces . . . when I said to them this is probably not going to be done in one Congress,” Ariale said. But he never thought it would take four.
Another intersection of the personal and political brought the bill more influential support. Rep. Cathy McMorris Rodgers (R-Wash.), gave birth in 2007 to a son with Down syndrome. The following year, she was elected to House Republican leadership.
“That changed the equation, because she was in a position to do something about it,” said Pedlikin. Momentum grew again in 2013, when another supporter, Sen. Robert P. Casey Jr. (D-Pa.), won a seat on the Finance Committee.
All that progress was put in danger in February, when the Congressional Budget Office estimated that the ABLE Act would cost $20 billion over 10 years.
“It was as if a bomb had gone off in the room,” one Democratic aide said.
Limits were added to address the CBO’s main concern, which was that elderly, newly-disabled Medicaid patients would take advantage of the new program. To qualify, one must have a disability diagnosis by age 26, and only one account is allowed per disabled person. The cost estimate is now $2 billion.
Casey asked two Republican senators working on the bill, Sens. Richard Burr (N.C.) and Orrin G. Hatch (Utah), to cement their agreement on the changes with a hug.
“We understood what we were up against,” Burr said Thursday. “Steve can look down from high in the sky and say, ‘Good job.’ ”
The wrangling delayed the bill. But there was a sense on all sides that this was ABLE’s year, that it was something both parties wanted to get done.
“That’s a pretty cool feeling. . . . You just sit down and say, ‘There ought to be a law,’ and pretty soon there is,” said Hodges.
“Pretty soon,” is relative. Audrey, now 14, is in middle school and is interested in robots, pigs and Pokemon. She has a strong sense of humor, something her father sees as both a sign of her intelligence and a family trait. And she has just learned a new song featuring the Spanish phrase “Si Se Puede.” As she translates: “It can be done.”