“The Long Haul”: How Long COVID Fits Into Disability Policy (Part 2 of an #ADA2022 Special)

OFF-KILTER with Rebecca Vallas

July marks the thirty-second anniversary of the Americans with Disabilities Act, or ADA, as it’s better known—the landmark civil rights law that promised equal opportunity and economic security for Americans with disabilities. As we’ve talked about a lot on this show over the years, as important as it is to celebrate how far we’ve come in the decades since the ADA became part of the fabric of American life, every time we hit the month of July, it’s even more important to acknowledge how far will still have to go to achieve the as-yet unfulfilled promises of the ADA.

And that’s why this July, Off-Kilter is once again spending all month long having conversations with leaders from across the disability community—starting with a two-part special diving into the picture for the millions of Americans now living with “long COVID.”

For part one of that two-part series of conversations, Rebecca sat down with Lisa McCorkell, cofounder of the Patient Led Research Collaborative; Netia McCrery, education director at the COVID-19 Longhauler Advocacy Project; and Ryan Prior, a journalist, a board member of ME Action, which works to build awareness about a condition called ME/CFS, and author of The Long Haul (forthcoming November 2022). They talked about their personal illness journeys, the stories behind these three organizations, and how patient advocates with other chronic illnesses like ME-CFS are teaming up with COVID long-haulers to push for research, policy change, and more, driving a COVID-era patient advocacy revolution.

To continue the conversation into this week—to dig into the U.S. policy response thus far on long COVID, the urgent need for research, how long COVID fits into the larger conversation about disability and disability policy and more—Ryan Prior stuck around for part two of this series, joined by Kim Knackstedt, a senior fellow at TCF whose work focuses on disability economic justice, who serves as co-director of the Disability Economic Justice Collaborative, and who until recently served as director of disability policy at the White House.

Editor’s note: The Century Foundation is thrilled to have the Patient Led Research Collaborative, the COVID-19 Longhaulers Advocacy Project, and ME Action as members of the Disability Economic Justice Collaborative, which you can learn more about at dejc.org.

You can find part one of Off-Kilter’s long-COVID two-parter here.

For more on this week’s topics, Kim and Ryan put together a treasure trove of resources for our listeners (!):

• Here’s the 2021 Presidential Memorandum calling for a “whole of government” approach to long COVID, and here’s the fact sheet on long COVID the White House put out on last year’s anniversary of the ADA
• For folks looking for related federal agency guidance and resources on long COVID:
• Here’s guidance from the Department of Health and Human Services; Department of Justice; Department of Education; and Administration of Community Living
• Here are resources on long COVID from the Department of Labor’s Office of Disability Employment Programs
• And here’s a fact sheet from the Equal Employment Opportunity Commission on what you should know about long COVID, the ADA, and other relevant disability employment protections
• Here are the three long COVID bills Kim and Ryan talked about:
• S.3721, Senator Kaine, Comprehensive Access to Resources and Education for Long COVID Act
• HR 7482, Representative Pressley, Targeting Resources for Equitable Access for Treatment for Long COVID Act
• HR 2754, Representative Beyer, COVID Long Haulers Act
• Check out Ryan’s new commentary for TCF on the need for a short-term disability program to protect long-haulers
• Find out more about Ryan’s new book The Long Haul (forthcoming November 2022)
• And here’s a recent Washington Post article on how long COVID could change the way we think about chronic illness and disability