November 16, 2018

Disability advocates helped save ACA

During the recent health care insurance fight in Congress, public attention was tightly focused on the early morning cliffhanger on the Senate floor with Sen. John McCain (R-Ariz.) dramatically voting against the so-called “skinny repeal” of the Affordable Care Act (ACA), also known as Obamacare, but many people didn’t realize that disability advocates also played a key role in rolling back the efforts to repeal the ACA.

One of the more searing images from the monthslong “repeal and replace” efforts in the House and Senate was a video of protestors from the disability rights group ADAPT, many in wheelchairs, outside of Senate Majority Leader Mitch McConnell’s office chanting “No cuts to Medicaid, save our liberties” as they were physically lifted and removed by the Capitol police. ADAPT is a grass-roots disability rights organization that started in 1974 in Denver to get wheelchair accessible lifts on buses. Since then, the group has created 30 chapters across the country and broadened its mission to advocate for community support for people who have disabilities so they can live outside of assisted-care facilities and other institutional centers.

Joined by Disability Action for America, a political action committee, along with many other disability and patient organizations, hundreds of advocates descended on Washington, D.C., over the past few months at their own expense, many with severe physical and medical challenges. They engaged in nonviolent civil disobedience and held vigils, waiting for marathon meetings to end and staying up for middle-of-the-night votes even if it meant sleeping in their wheelchairs.

Parents from across the political spectrum who have children with chronic diseases and disabilities also jumped into the fray, speaking out against the proposed changes to the ACA on social media and in phone calls, meetings and town halls with their congressional representatives. Of utmost concern were the proposed cuts to Medicaid — a crucial lifeline for the poor, elderly and people with disabilities — not only for medical treatments and prescription drugs, but also for a long list of other ancillary services such as in-home care, special education-related programs in public schools and durable medical equipment such as wheelchairs. Mental health advocates worried that therapy and treatments now covered by Medicaid would be curtailed, reduced or even eliminated in sparsely populated regions if Medicaid became a “block grant,” as proposed in the House-approved version of the health care bill.

Families who rely on the ACA were also spurred into action. A June 28 Time magazine article featured Ali Chandra, a former pediatric nurse in New Jersey who has a son, now 2, born with a rare health condition that included nine heart defects, two left lungs and five spleens. Before the 2016 campaign she wasn’t even registered to vote, but after the health care debate started in the House, she became an outspoken advocate to save one of the key elements of the ACA — a ban on lifetime limits for insurance payouts.

Before the ACA became law, many plans set limits on what they would spend for covered benefits during the entire time a person was enrolled in that plan, such as a $1 million maximum. Patients were required to pay the cost of all care exceeding those limits, which often forced them into bankruptcy. And to make her point that lifetime limits could be reached all too soon, Chandra tweeted a photo of her son’s medical bill from his most recent heart surgery at Boston Children’s Hospital with a total cost of close to $250,000. Her insurance carrier paid for all but $500 of that operation and recovery.

“We’re the ones who make sure they get their meds on time, we hold them down for painful procedures and comfort them afterward: The only thing we know how to do is fight,” Chandra told Time magazine. “We’ve been fighting since the moment we heard our kid’s diagnosis, since the moment they were born. This is just a regular day for us.”

Even rock star Rod Stewart, 72, got into the act, donating $30,000 to Trach Mommas of Louisiana, a Baton Rouge group supporting children with severe disabilities, to travel to Washington, D.C., in July to protest potential cuts to Medicaid. Stewart said that, as a father of eight, he felt compelled to help after seeing a CNN news story on the group’s need for funds to make the trip.

As a parent and advocate, I was glued to the ongoing media coverage and the daily, sometimes hourly, breaking news. Would the ban on pre-existing conditions stay? How deep would the Medicaid cuts go? Would the GOP-controlled Congress take away health insurance from the poorest and sickest among us to give the wealthy a tax break?

And even with McCain’s decisive vote, who knows what will happen next week or next month?

Disability advocates and their allies would be wise to remember what our tradition teaches us from Pirkei Avot 2:21 (Ethics of the Fathers): “It is not incumbent upon you to complete the work, but neither are you at liberty to desist from it.”

MICHELLE K. WOLF is a special needs parent activist and nonprofit professional. She is the founding executive director of the Jewish Los Angeles Special Needs Trust. Visit her Jews and Special Needs blog at