How Five Parents at a Kitchen Table Passed Major Legislation in a Dysfunctional Congress

Can regular folks, not Washington, DC, insiders, get laws passed in Congress? Perhaps they are the only people who can get laws passed these days.

The Achieving a Better Life Experience (ABLE) Act, a law enacted by Congress last December that provides a path to savings for families of children with disabilities, has been called the biggest thing since the Americans with Disabilities Act. It passed with broad support from both parties in a Congress that couldn’t agree on anything else. While most Americans were complaining about one of the least productive Congresses in history, the disability community was celebrating a big victory.

The ABLE Act defied the odds because it followed an unconventional path to passage that circumvented the broken partisan system.

Some Children Left Behind

My first child, Audrey, was born with Down syndrome, a common genetic condition that can cause physical and intellectual disabilities. In 2005, when she was still in preschool, I went to a financial planning seminar at my local library to learn how to save for her future. It’s what you do when you have a kid. But in that seminar, it soon became clear to me that saving for a kid like Audrey was different.

The standard savings options they talked about in the seminar wouldn’t fit our family because they were created for people whose lives follow the typical pattern: go to college or get job training, work to support themselves, then retire on their savings.

A person with Down syndrome, which can cause a host of physical, medical and intellectual problems, probably wouldn’t follow that path. Sure, she might go to college — some people with Down syndrome do that these days — but chances were against it. If I used a standard college savings plan like a 529 plan, I might have to pay a big penalty to the IRS if Audrey didn’t use it for college. On the other hand, what if I didn’t save for her education and she grew up to be one of those exceptional kids with Down syndrome who did go to college? Even though she was only four at the time, she already seemed pretty smart to me.

Heck, even if she did go to college, I could be pretty sure Audrey would never earn enough to support herself. She would need need help with housing costs, medical bills, and other expenses throughout her life. Her medical needs might be higher than most (and for many people with disabilities who need things like special equipment or staff to help them, the expense of just living is much, much higher than normal). And she would need help with those things throughout her life. Our savings goals for her would be much different from someone who earned money and saved for their own retirement.

So the various savings plans the government has created for regular people, such as 529 plans and individual retirement accounts, don’t work for many people with disabilities. They contain tax penalties and limitations tied to their purpose that only work if you have a typical, easily planned life.

And it got worse. Even if a person with a disability can save money, or their family can save for them, it can backfire because most have no hope of saving all the money they will ever need, so they must rely on government benefits. But the government expects anyone getting disability benefits to be poor, or at least pretend to be poor. Having as little as $2,000 in her name could disqualify Audrey from certain federal benefits. Like most parents of kids with a disability, my wife and I had hire a lawyer to create a special needs trust to keep money out of her name.

The unfairness of this situation made me frustrated, and then angry. When Congress created all these nice tax benefits to save for the future, kids with disabilities had simply been forgotten.

I decided to fix that. I wanted to create a new, special savings account just for people with disabilities. And this is where the story moves beyond a different way to save money for kids with disabilities to a different, and pretty extraordinary, way of getting things done in Congress.

Going Around the Broken System

I took my idea to my local Down syndrome support group, the Down Syndrome Association of Northern Virginia (DSANV). The chairman of the DSANV’s government affairs committee at the time, Phil Pedlkin, had a son with Down syndrome close to Audrey’s age. Phil had worked as a Senate staffer on Capitol Hill—this is Northern Virginia, after all, a suburb of DC, so the ranks of DSANV are full of Hill staff, lobbyists and the like.

Phil and I sat down with three other DSANV parents who were interested in the idea, and we confronted some hard truths about Washington, DC. First, some national disability advocacy groups were sour on the idea of any kind of wealth creation for people with disabilities because of the threat to government benefits. The fact that we would simply insist that a savings account for people with disabilities would be shielded from benefit calculations (and that if they weren’t, people simply wouldn’t use them anyway) was lost on these groups, who were settled firmly in the “be poor or pretend to be poor” mindset. They had spent decades protecting benefits from cuts, so their fears were understandable, but things were changing and we needed to adapt. Without a consensus among those groups, our idea would bog down.

The second hard truth was that Washington was broken. Congress was hardening on partisan lines, and any idea one side offered was usually vilified by the other just because of its association with the opposite political party. Cooperation and compromise was dying. Our idea involved a change to the tax code that would cost the federal government money in lost tax revenue and would require offsetting spending cuts. That wasn’t going to happen without bipartisan agreement.

The last thing we wanted was for our proposed law to get hitched to one particular party.

Once again, some national disability groups were more a barrier than a benefit when it came to forging a bipartisan, low-key strategy. They were invested in the same dysfunctional partisan system. Their impulse would be to go to the leadership of whichever party ran Congress at the time and try to ram the idea through. We knew that wouldn’t work.

We would have to lead the national groups by the nose. We started by going around them and dealing directly with Congress.

Though only some of the five parents around the kitchen table had experience as Hill staff or lobbyists, we had enough savvy and connections to make a start, especially since we were pursuing a quiet, slow, grassroots approach. And since we all lived and worked close to downtown Washington, we could work on a volunteer basis to walk the halls of Congress in support of our idea.

One of us had a neighbor who worked for Rep. Ander Crenshaw, a Republican congressman from Florida. He wasn’t in the leadership or a key committee chairman, but for us, he was perfect. Rep. Crenshaw embraced our idea and introduced a bill.

We quickly approached rank-and-file members of both parties to build a bipartisan coalition behind the bill. We knew we had an idea that both sides could embrace—Republicans liked the idea of self-sufficiency; Democrats liked anything that helped people with disabilities while preserving government help.

We didn’t wait for permission from national disability groups, we just did it. We steadily built momentum for our bill. Soon, the national groups saw a good thing happening, and they signed on to our idea and our strategy.

Rep. Crenshaw, to his great credit, stuck with this bill for ten years and worked hard to build support for it. It’s notable that when the Democrats took the House in 2007, and then the GOP took it back in 2011, the ABLE Act never stumbled because of our bipartisan approach.

As we branched out, we learned that other people around the country, both advocacy professionals and regular folks, had come up with similar ideas, so momentum grew quickly. Our cause also received a big boost in 2007 when Cathy McMorris Rodgers (R-WA) gave birth to a son with Down syndrome. She soon joined the bipartisan group of legislators championing the ABLE Act, and the birth of her son focused new light on the proposal.

The bill required some paring down to pass. The original estimate of $20 billion in lost tax revenue threatened to derail it. Narrowing the eligibility and maximum allowable savings cut that to a manageable $2 billion. Last last year, the compromise was ready for a vote, and the ABLE Act passed the House by a huge margin—404–17—with votes from a majority of both parties. It easily cleared the Senate, and President Obama signed it Dec. 19.

The five parents at the kitchen table had always known we wouldn’t have the muscle to pass the bill alone. It took a national coalition of disability groups, and thousands of people with disabilities and their families, lobbying for the bill to push it over the top (and this being Washington, some of them forgot about us and took full credit for the victory).

But we think our grassroots, bipartisan strategy is the reason it succeeded in a Congress that could agree on little else. We broke through the partisan quagmire, and the network of interest groups stuck in it, by taking it slow and working from the bottom up instead of the top down.

“Our bill survived two changes of party majority in the House and passed with strong bipartisan support in a Congress that could barely agree on anything else,” said Phil Pedlikin. “We think our approach says a lot about how to get things done in Washington and get around the gridlock.”

Gail Russell Chaddock of the Christian Science Monitor thinks so too. In a February piece that details the many travails of getting this bill from Phil Pedlikin’s kitchen table to President Obama’s desk, she suggests that our strategy could be a model for others in this hyperpartisan environment.

“Its passage holds lessons for how to get things done in a gridlocked Congress,” she wrote. “ Is it a combination that could unlock immigration reform, entitlement reform, tax reform? In some ways, yes. But the greatest lesson from the ABLE Act’s unlikely passage is that in the Washington of today even common-sense bipartisan legislation can take years. There is no silver bullet, no quick fix. The ABLE Act succeeded because of humility, hard work, and an honest desire to find a solution.”

The effort ended on a bittersweet note, though. One of the five parents in our original group, Steve Beck, worked the hardest and longest of any of us to pass this bill. He started with no legislative experience, but by the end he was a seasoned amateur lobbyist who put in many volunteer hours on Capitol Hill to support it. Just days after he witnessed the House finally voting on the bill, Steve unexpectedly died. Fittingly, Congress named the law in his honor.