Reflections: ‘Disability Community Advocacy Made The Biggest Difference’

After a series of failed attempts to pass health care legislation aiming to dismantle the Affordable Care Act, Senate Republicans tried for a last-ditch effort entitled the Health Care Freedom Act, or ‘skinny repeal,’ on July 28. The bill was defeated 49-51. For an explanation of what the skinny repeal would have done, click here, and to read Family Voices’ statement on the outcome, click hereThis success wouldn’t have been possible without the tireless advocacy of so many who wrote, called, and visited to let Senators know why any bill involving Medi-Cal cuts would be detrimental to children and youth with special health care needs who depend on the program.  

Alison Barkoff, Director of Advocacy at the Center For Public Representation, reflects on the power of the disability community in light of the recent defeat of the skinny repeal. 

With a few hours of sleep after last night’s vote, the significance of our advocacy is just starting to sink in. We stopped what was believed to be inevitable. That alone is amazing. Reflecting on the experience, we’ve also done so much more.

We have shown that advocacy works.

People with disabilities, their families, and allies made their voices heard. We told our stories, met with members of Congress, called, wrote, rallied and protested. We put a face on the harmful impacts of the bill. And as everyone on the Hill has told us, it was the advocacy of the disability community that made the biggest difference.

Alison Barkoff, Director of Advocacy at the Center For Public Representation

We have shown that the disability community is a force to be reckoned with.

The disability community didn’t just show up — we led the fight. With ADAPT putting their bodies on the line again and again, the Little Lobbyists going from office to office to literally show whose futures would be capped, and the Arc collecting over one thousand stories in a single weekend — the leadership in the disability community has been amazing.

We have invigorated our disability rights movement and built strong cross-disability coalitions. 

We all came together. So many people — both at the national and state level — said that groups that don’t usually collaborate were working together. We blew up the usual silos and we now have some very strong cross-disability coalitions at the national and state levels we can build off for our next fight and to push our affirmative agenda.

We have educated members of Congress and the public about Medicaid and disability rights.

Just a few months ago, we would go to Hill meetings and staffers didn’t know much about Medicaid, let alone what it meant to people with disabilities. We couldn’t get any attention on the Medicaid cuts and caps that put the lives and liberty of people with disabilities at risk. Now, this has changed. Cuts and caps to Medicaid became the wedge issue in the health care fight. Members of Congress and the public now have a fuller understanding that Medicaid helps adults and children with disabilities live in the community, be part of a family, go to school and have a job. We still have more work to do, but we are so much better positioned for our future fight to protect Medicaid.

We have built relationships with broad grassroots groups.

We have worked together with grassroots groups like MoveOn, Indivisible, FamiliesUSA, and so many others. There is much more for us to do to educate and get them to support the disability agenda, but there are some really great relationships to work from.

We have seen several members of Congress emerge as major disability rights champions.

A number of members of Congress have truly stepped up as champions of disability rights. In particular, Senators Casey, Hassan, Van Hollen and Duckworth have put disability rights front and center in the health care fight (they’re also co-sponsors of the Disability Integration Act). These champions will be important not only as we work to fight against harmful bills, but as we try to move forward the disability rights agenda.

In short, I am truly in awe of our community.  Thank you for the tireless advocacy by each of you to get us to this point.

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