The Long Road Ahead for the Millions with “Long COVID”

Some twenty months into the COVID-19 pandemic, estimates suggest that between 3 million and 10 million Americans may have “long COVID,” which can bring long-term and, in some cases, debilitating symptoms ranging from chronic pain and fatigue to brain fog, respiratory problems, organ damage, and more.  While experts may still be fuzzy on the exact number of so-called COVID “long-haulers,” two things are clear: this population represents the largest influx of new entrants to the U.S. disability community in modern history, and their ranks continue to grow by the day. But is America’s public policy infrastructure prepared to handle the coming tidal wave? And how was it faring for the 1 in 4 Americans already living with disabilities before the pandemic?  Following last week’s deep dive into America’s house-of-cards child care system, for this week’s Off-Kilter, Rebecca sat down with three dear friends and leaders from the disability community for a look at America’s frayed caring economy from the disability perspective; the policies we need to ensure COVID long-haulers aren’t left out in the cold; and how Democrats’ Build Back Better legislation could begin to make transformational change. This week’s guests include: Matthew Cortland, senior fellow at Data for Progress and cofounder of the #DemolishDisabledPoverty campaign; Kathleen Romig, senior policy analyst at the Center on Budget and Policy Priorities; and Elena Hung, co-founder and executive director of Little Lobbyists, a family-led group advocating for children with complex medical needs and disabilities (and Xiomara’s mom). For more on all this:  Learn more about the home and community-based services (HCBS) provisions in Build Back Better, via NBC News. Here’s a good overview of long-haulers’ challenges accessing disability benefits, via the New York Times. Read more from Matthew and Data for Progress: “The Reconciliation Bill is a Disability Justice Issue;” “The safety net program Congress forgot” Read more from Kathleen and CBPP: “After Years of Underinvestment, It’s Time to Rebuild the Social Security Administration;” “After Decades of Neglect, It’s Time to Rebuild SSI”  Learn more about Elena’s work and get involved with the Little Lobbyists. Follow #CareCantWait for real-time updates on home and community-based services (HCBS) in the Build Back Better legislation.