Spotlight Exclusives

Long-Haul COVID Prompts Calls for New Disability Investments

Megan Buckles Megan Buckles, posted on

One of the many unknowns facing policymakers in the wake of the COVID-19 pandemic is the impact of so-called “long-haul COVID’—patients who suffer long-term, often incapacitating symptoms from the virus. Many disability rights advocates and experts fear long-haul COVID could add millions to the rolls of those needing disability benefits, a system that many feel is already overtaxed and underfunded. Megan Buckles, senior policy analyst for the Disability Justice Initiative at the Center for American Progress, took part in a recent webinar that focused on the issue while also marking the 31st anniversary of the Americans With Disabilities Act. Buckles spoke recently with Spotlight about the need for disability aid reforms and the potential impact of long-haul COVID. The transcript of the conversation has been lightly edited for length and clarity. 

Tell us a bit about the recent event CAP held that focused on the potential impact of long COVID on disability relief.

The event was to celebrate the 31st anniversary of the Americans For Disabilities Act, a historic piece of civil rights legislation for the disability community, and it was really focusing on where do we go from here, especially with the pandemic.  We know that people with disabilities have been among the hardest hit, and they’re often left out of the recovery. Furthermore, on top of that, we have a growing population of people with disabilities now because of long-haul COVID. What we were really talking about was what does that mean for the community. Our goal at DJI really is to hopefully spotlight that we don’t need to pit these communities against each other, and that the disability community will really welcome in anyone whoever would like to identify as a person with a disability, particularly long-haul COVID patients.

What we’ve been asking for after the pandemic and during the pandemic is what the community has been asking for decades, and that would be to help those already in the disability community and those with long-haul COVID. We wanted to bring together a panel of organizers from very diverse backgrounds to ask, how has COVID affected your community and what do we do moving forward. The disability community is really trying to emphasize that we cannot go back to normal, as a lot of people have been wishing for, because normal didn’t work for a lot of people, particularly for communities of color and the disability community.

Prior to COVID, the disability community experienced twice as much poverty as those without a disability. And those numbers were higher for people of color. You’re looking at roughly 40 percent of African Americans with disabilities living in poverty. Only 5 percent of housing is accessible in this country for people with mobility issues. And if you’re looking specifically at wheelchairs users, roughly 1 percent of housing is accessible to them. We have higher unemployment rates—the list could go on—and that was before the pandemic. Obviously, everyone has been hit, but those communities have been hit hardest and you have millions more people joining the community who will rely on these services that were already overwhelmed. All aspects of support for the disability community—education, home-based services, Social Security, housing—all needed substantial modernization and investment before the pandemic.  We’re trying to push this opportunity as a wakeup call.

You mentioned millions of people who might go on disability because of long-haul COVID. Are there any more precise estimates?

That research is still very much in the field, as you can imagine, but there is data that shows one-third of those who have been diagnosed with COVID may develop long haul and there are 34 million people who have been diagnosed. Not all those folks will go on disability, but those numbers are substantial.

You have this huge infrastructure bill on the Hill and there are other funding vehicles moving through committees. Are there any pieces of that which would be helpful to the disability community or are you still looking to get more added?

I think our biggest push is home and community-based services. We did see an investment and an increase in funding but the biggest key to this infrastructure bill and some of the rescue plan is that we need permanent investment and permanent changes. We have added some funding to home- and community-based services but there’s been nothing permanent. We want permanent investments in these programs, and I would say our three biggest targets are home and community-based services, modernization of Social Security and an increase in the minimum wage and the elimination of sub-minimum wage.

And when I say modernize Social Security, that can mean several different things. One, we need to give more people money. Our monthly disability benefits right now through Social Security are around $790. When you compare that to the cost of living, for example, for a modest one-bedroom apartment, it’s a little over $1,000. We are paying people to live at a poverty level. When we talk about asset limits for these programs—how much money people can have to live and save—they haven’t been updated in almost four decades. You’re looking at roughly $2,000 for an individual and about $3,000 for a couple. How do you save for a medical emergency? How do you save to own a home? How do you save to fix damages to your car if you have to have that low a level of assets per month?

We’re also looking to call for more guidance and education funding, specifically for long-haul COVID folks, so that they know what programs and services are available and what programs they are eligible for and how to apply for those. Prior to COVID, about six in 10 Social Security applications were denied outright the first time around, so we know these systems are confusing and they’re hard and people need help. And that’s only going to grow with more people.

And specifically on the SSI (Supplemental Security Income) limits, what’s the state of play on that in Congress?

I want to be hopeful. I know we are working with other organizations to make a push and include that in something that could pass this month.

During the pandemic there was the need to dramatically expand telehealth and digital services and many advocates are pushing to keep a lot of that. Can you talk a little about the impact of that on the disability community?

Like any of these issues, there’s a lot of nuances; there’s both positives and negatives to telehealth within the disability community. It does open up so many doors for folks and I think you have to also realize how much these issues intersect. When you’re talking about telehealth, that saves people so much money and time and transportation costs; you might take 20 minutes for a telehealth appointment to get a prescription as opposed to a 6-hour trip using paratransit. It’s also really helped those who are immune-compromised or have other chronic illnesses to see their doctor more and not be exposed more. On the other hand, we know that the disability community experiences poverty at a higher rate, and they have less access to broadband and technology. If we are going to invest in more telehealth services, we also then have to invest in broadband and make sure that it’s affordable and accessible. We also have to make sure that these services are accessible to those with communication disabilities, such as the visually impaired or the deaf community.

Some of the other changes being discussed on the Hill, such as permanent expansion of the Child Tax Credit, also would help the disability community, correct?

Absolutely. The poverty rate, as I said, for both adults and children are astronomically higher in the disability community and especially those of color. I think the widespread view in the disability community is, just give us money and let us make those choices. We absolutely support and are excited about the expanded Child Tax Credit.

And the experience of the pandemic has provided pretty conclusive evidence on the positives that come with putting money in people’s pockets.


Right. And the disability community has been calling for a lot of these policies and are really pushing to make them more permanent. Our belief is that if we uplift the most marginalized out of poverty, we’re going to uplift the entire economy. Putting money in people’s hands allows them to truly invest in their community and be active members.

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