Behind the Fight to Save Medicaid

Erin Shea
Disability Allied Law Students Association

This summer, the disability community was threatened to an extent that it had not been in years. A small group of people were meeting behind closed doors, crafting a bill that would fundamentally alter Medicaid, a program many people with disabilities depend on. At times it felt like there was nothing the community could do to stop it.

The Senate’s secret health care deliberations had dangerous implications. Each proposal decreased federal funding for Medicaid, meaning a decrease in funding for services that many people rely on.

People were scared about what the proposals meant for them and their loved ones. Would they have to go back to living in an institution? Would some of them die because they wouldn’t have access to the care they needed? Every proposal the Senate was considering would have set the disability community back decades.

So, the community took action. We protested and rallied our allies. We crafted informational materials for Senate offices and we met with staff, asking them what information might best help their boss make an informed decision.

Most importantly, people with disabilities made themselves visible. They led protests at Senators’ state offices and at state capitals and flooded Capitol Hill from all around the country, sharing their stories. They staged “die-ins” outside of Senate offices, lying on the floor to simulate death. They disrupted the motion to proceed vote with protests in the Senate Gallery and Hart Senate Office Building, chanting, “Kill the bill! Don’t kill us!” and “I’d rather go to jail than die without Medicaid!” Hundreds were arrested in the process, but they felt that their lives were on the line, and they spoke out.

The battle finally came to a head, ironically, during the week of the 27th anniversary of the Americans with Disabilities Act (ADA). That landmark civil rights legislation promised equal opportunity for people with disabilities, and while that has not quite been its effect, it has done a tremendous amount to integrate people with disabilities into society.

The health care bills that we were fighting, including the Better Care Reconciliation Act (BCRA), the Obamacare Repeal Reconciliation Act (ORRA), the American Health Care Act (AHCA), and the so-called “skinny repeal” bill all flew in the face of the advances championed by the ADA.

The votes came in at 1:30 in the morning on Friday, July 28. As it became obvious that the skinny repeal bill, the last of the proposals to be considered on the Senate floor, had failed, I was reminded of the crucial role that activism can play in shaping law and policy.

Without the months of opposition waged by people with disabilities and other affected groups around the country, Senators could have easily signed on to legislation without investigating, recognizing, or appreciating the real impacts. But, the unrelenting pressure from activist groups slowly changed the public discourse. That change trickled up to the Senate, giving three Republicans the political will they needed to break with their party. That’s the power of activism.

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