Rylin Rodgers is the Director of Public Policy at the Association of University Centers on Disabilities where she works on federal policy and legislative issues that affect people with developmental disabilities and their families. Prior to working at AUCD, Rylin served as the Training Director and Family Leadership Coordinator for the Riley Child Development Center (Indiana’s LEND), and was a founding board member of Family Voices Indiana. Both as a parent and as a professional, Rylin has extensive expertise on topics including special education regulations, public and private health care financing and family/professional partnerships.

Public policy may feel abstract or far away for many of us and honestly, right now it can feel exhausting, painfully political, and even a bit scary. For better or worse, public policy is not abstract or far away for me. My life, like the lives of many Americans, has been concretely impacted by policy in many ways. But none is more clear and critical than health policy – it is about life and death and it touches every part of life for me and my family. My children were born with disabilities and my husband and I are people with preexisting conditions. Healthcare policy affects our income, our choices of jobs, the ability of my children to choose their own educational and professional options, and on and on. Even if we want to turn away from policy debates, the truth is that healthcare is both deeply personal to every American and very much a public concept that is vital to our communities and society.

To know me is to know that healthcare – access to it for all, access to it free from discrimination – is a primary value and in some ways my life’s work. Following the last presidential election, the stakes were incredibly high as we faced a promise to repeal critical protections of the Affordable Care Act (ACA): preexisting conditions, yearly and lifetime limits, essential benefits, young adults on parents’ insurance, Medicaid expansion, and others. At least 50 million Americans have a pre-existing health condition that would have made them uninsurable in the pre-ACA insurance market, while another 50 million or more have conditions that could trigger higher premiums or coverage limitations. Roughly 15 million adults receive coverage through the ACA’s Medicaid expansion, the majority of whom would likely not only lose that coverage but struggle to afford to replace it on the open market without ACA underwriting. Americans rose up and educated their members of Congress about what they needed; about what the ACA means to real people; about how many of us live with disability. I reflect on that 12-month fight as one of the greatest moments of civil education ever, of Americans and by Americans. And it worked: by the narrowest of margins, Congress did not repeal the ACA.

The reality, though, is that the rhetoric and the political fight to repeal the ACA continued and expanded to other branches of government. In the last few weeks the realities of those fights and the blurred lines separating the branches of government have created a risk to healthcare that is real, immediate, and painful. Justice Ruth Bader Ginsburg’s death created an opening on the Supreme Court that could swing the ruling on the ACA case already scheduled to begin on November 10th. The fight over timelines and process, hypocrisy and purpose, have not changed the reality that the seat is being filled right now in record time, even in the midst of a contentious election and a global pandemic. People are dying and those who survive are joining the ranks of Americans with preexisting conditions who benefit from protections afforded by the ACA. That we are here right now after fighting so hard to win the Congressional battle two years ago, and that we may well lose the Supreme Court battle soon, is frankly overwhelming. It is frightening. And it is deeply personal.

Now is not the time for us to stop fighting for our healthcare rights and needs. In fact it is time to start anew. We must stand up, both with our voices and with our votes. The confirmation process for Judge Amy Coney Barrett as Associate Justice to the Supreme Court is a chance to go on record with every current and potential member of the Senate to let them know what this means to you and what you would expect from them in the event of a repeal. We need to ensure that they know the stakes for Americans around preexisting conditions, yearly and lifetime limits, essential benefits, Medicaid expansion, and so much more. Regardless of what happens with the Supreme Court, the 117th Congress that takes office in January will face the enormous task of transforming American healthcare. How we vote in all 435 House races, 35 Senate races, and for President, will touch our lives and our health, and will write the next chapter in healthcare policy. For me and my family, and for so many others, this is personal; it’s about our access to lives that allow us to contribute to our community and to our country. Now is the time to join the fight to ensure political and policy efforts that address the needs of every American.