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: 

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REBECCA VALLAS (HOST): Welcome to Off-Kilter, the show about poverty, inequality, and everything they intersect with, powered by The Century Foundation. I’m Rebecca Vallas. Some 20 months into the COVID-19 pandemic, estimates suggest that between 3 million and 10 million Americans may now have long COVID, experiencing continued, and in some cases, debilitating symptoms ranging from chronic pain and fatigue to brain fog to respiratory problems, organ damage, and more.

While experts may still be fuzzy on the exact number of so-called COVID long-haulers in the U.S.—a population that continues to grow by the day—one thing is clear: COVID long-haulers represent the largest influx of new entrants to the U.S. disability community in modern history. But is America’s public policy infrastructure prepared to handle this tidal wave? And how was it faring for the one in four 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, I 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.

Matthew Cortland is a senior fellow at Data for Progress and co-founder of the #DemolishDisabledPoverty campaign, Kathleen Romig is a senior policy analyst at the Center on Budget and Policy Priorities, and Elena Hung is the co-founder and executive director of Little Lobbyists, a family-led group advocating for children with complex medical needs and disabilities. And in some circles, she’s perhaps best known as Xiomara’s Mom. Let’s take a listen.

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VALLAS: Matthew, Elena, Kathleen, thank you so much for taking the time to come on the show, back on the show, for a couple of you. It’s pretty wonderful to get to at least hear each of your voices.

KATHLEEN ROMIG: Happy to be here.

MATTHEW CORTLAND: Thanks so much.

VALLAS: So, I’d love to start, before we dive into COVID long-haulers and that whole conversation, I’d love to give each of you the opportunity to talk a little bit about how you come to this work. Each of you has personal as well as professional connections to disability policy, to chronic illness in some cases. So, I’d love to give each of you a chance to actually share little introductions of yourselves and to say a little bit about how you come to this work. Elena, I’m gonna start with you. And the story of how you come to this work includes the story behind Little Lobbyists.

ELENA HUNG: Yeah. Well, thank you. Thank you, Rebecca. So, yeah, absolutely. My story is one of, I would say, personal to professional journey. I’ve often described myself as an accidental activist that got into this in 2017, really right after inauguration. And watching the news about repeal efforts, I got really scared, angry, and worried, and I decided that I needed to speak up. So, it was very much a healthcare issue for me that then very, very quickly became about disability. And that’s how I have framed it since then.

But before that, I would say it was really the birth of my daughter seven years ago. My daughter, Xiomara, is the joy of my life, really. She is happy, kind, and funny and clever, a little bit naughty. So, seven years ago, I had a great pregnancy. I had an amazing birth. And then 15 minutes after my baby was born, she was placed on 100 percent oxygen support and rushed to the neonatal intensive care unit, where she remained for the next five months. She was diagnosed with serious medical conditions affecting her airway, her lungs, heart, and kidneys. And to this day, she uses a tracheostomy to breathe, a ventilator for additional respiratory support, a feeding tube nutrition, in a wheelchair to get around and explore the world around her.

And I share all of that because before that, that was just something that I had zero experience with. That was not part of my world. Xiomara was the first child that I had ever met with a tracheostomy. And so, it was a healthcare and a personal level, and then very, very quickly became so much bigger than me, so much bigger than Xiomara, and so much more than just healthcare, but about really, disability and not just getting the care that she needed, but building a good quality of life for her. So, yeah, that’s my story!

VALLAS: And there’s so much more that we’ll get into, but Xiomara is a pretty amazing young person and someone who actually I’m honored to have had on this show with you the last time that you were with Off-Kilter—

HUNG: Oh, that’s right!

VALLAS: —and in the days of trying to preserve the Affordable Care Act and all of that. So, definitely a very, it feels like a different lifetime, but certainly an outcome that would not have been the same without the amazing work of Little Lobbyists and really the army that you have organized.

Matthew, I’m gonna go next to you. Your day job has you as a senior fellow at Data for Progress these days, but you also bring a lot of personal perspective to this work.

CORTLAND: It’s true. My work at Data for Progress really focuses on disability and chronic illness and healthcare and the intersection of all of those different policy areas because when I was in college, I had an exacerbation of what turned out to be an inflammatory bowel disease, a quite serious course of something known as Crohn’s disease. And a for-profit health insurer literally tried to kill me. They turned a 72-hour emergency appeal of their denial of the treatment that my medical team prescribed to me into a two-and-a-half-month-long campaign of stonewalling where they would do things like, quote-unquote “lose the emergency appeal paperwork” and then say that they didn’t get the fax that showed that they signed for the emergency appeal paperwork and then say that they didn’t get the— It just, it was bad faith all the way down.

And so, it changed the course of my life, and I, instead of becoming a developmental psychologist and working with kids, I went to law school and public health school, graduate school in public health, to learn how to survive, literally just learn how to survive the systems that disabled and chronically ill folks in this country are forced to navigate. And it also is now my day job.

VALLAS: And you are also one of the founders of the Demolish Disabled Poverty campaign, as I will make you get into a little bit later on, so a few hats that you wear, but all at the intersection of disability and poverty.

Kathleen, I’m gonna go to you last, but certainly not least. You bring your Center on Budget and Policy Priorities hat, as well as a long time at the Social Security Administration. But you also, like Matthew and like Elena, bring personal experience to this issue too.

ROMIG: Yeah, absolutely. So, I have a somewhat of the opposite path of Elena. It’s more professional to personal for me. I’ve been working on Social Security policy for the last 20 years now, focused on disability and retirement benefits both in Social Security and SSI and more recently on paid leave, including the medical leave that people need for themselves and for their family members. And I also, during this time when I was working on disability policy, I had a child, my younger son, Adam, who is autistic. And that really deepened my understanding of the work that I had been doing all this time.

Trying to navigate these systems, even as a disability policy expert, was often very overwhelming. The language alone could sometimes be intimidating, even for someone with a master’s degree in social policy, like Matthew said. And so, navigating the healthcare system, navigating the education system, and then thinking about how that interacts with the benefits system or doesn’t interact, thinking of how these systems either work or often don’t work for people who, even in the luckiest of circumstances like me, really has informed my work to how to make them work better for people who might not be so lucky.

VALLAS: And that family perspective is definitely something where we’re gonna get into in this conversation, so part of why I wanted all of you to put some of the personal into an otherwise professional conversation.

But to dive into the topic for today’s episode and really to paint a picture of what’s going on for the group of so-called COVID long-haulers in the U.S., people who are still exhibiting symptoms long beyond actually the “normal” quote-unquote convalescence period. As I mentioned up top, estimates suggest that some 3 to 10 million people now have COVID long-haul symptoms in the U.S. That’s a number that we don’t have a great handle on, so that’s obviously a very wide range of estimates there, and I think a lot more that we hopefully will know at some point that puts finer numbers to that.

But Kathleen, starting with you, talk a little bit about what we know and what we don’t know about long-haul COVID and who these so-called long-haulers are. Some are indicating that long-haul symptoms actually can be substantial enough to prevent returning to steady work.

ROMIG: Mmhmm. Absolutely. I think the picture is coming into focus, and we’re also gonna need to do a lot more work in order to understand this phenomenon better and help the people who are experiencing it. And so, yeah. I mean, COVID is sort of a.k.a. the novel coronavirus; it’s novel. It’s new, so we’re still learning about how it affects people, especially over the long term. But it’s clear that it does affect some people, a significant fraction of people over the long term.

It’s also clear that COVID is very complicated, and it manifests differently in different people. It can trigger really significant long-term problems with people’s lungs, with their hearts. It can trigger strokes, neurological problems, cognitive problems, all kinds of— Basically, every major system of the body can be potentially implicated in COVID.

We also know that some of the treatments for COVID, like being on a ventilator, can themselves cause significant long-term health problems. There’s something called post-intensive care syndrome. It’s really serious, and it can cause both physical and cognitive problems, as well as post-traumatic stress. After a prolonged ICU stay, most people can’t perform their activities of daily living for months, and many of them can never return to their jobs. So, these are the kinds of people who Social Security Disability Insurance and SSI are specifically designed.

But we don’t know exactly how this is going to work when people start to apply in large numbers for both SSDI and SSI. We really need more study on how the long-term effects of COVID does affect people’s ability to work so that SSA can decide those disability claims accurately and give people the benefits that they need and that they’ve earned. But in order to do that, I think they’re gonna need to do a lot more work to make that process happen.

VALLAS: And we’re definitely gonna get into the Social Security side of the conversation because that is a hugely, hugely important piece of this and definitely a piece that we are now all starting to hear from a growing number of so-called long-haulers, as the early edge begin to try to access disability benefits in cases where folks aren’t able to continue to support themselves through work.

But continuing with some of this broader picture painting, Matt, I’m gonna turn to you next. Of course, this is an economic issue in addition to a health issue, and Kathleen was sort of starting to go there by bringing up some of the economic policy implications. But obviously, for folks who are unable to continue to do their jobs and to support themselves and their families with newfound health conditions and challenges, obviously it’s not just a health story anymore, it becomes an economic story for families as well.

President Biden announced a set of protections for COVID long-haulers actually timed with this year’s Americans with Disabilities Act, or ADA, anniversary, this being the 31st anniversary of the ADA. But you were one of many advocates noting that while those were important first steps, they’re not quite the universe of what we’re gonna need to do as a nation if we’re going to ensure that our policy infrastructure is actually up to the task and ready to be there for an influx of people with this condition.

Talk a little bit about, after that very helpful starting point that Kathleen just gave us, the broader picture of where our policy landscape is up to the task, and most importantly, where you’re worried it’s not. And obviously, that’s where the meat of today’s conversation is going to take us.

CORTLAND: Absolutely. And you’re absolutely correct that back in July of 2021, speaking at the White House, celebrating the 31st anniversary of the Americans with Disabilities Act, President Biden said that long COVID symptoms, including fatigue and brain fog, can, and to quote the president directly, “can sometimes rise to the level of a disability.” That’s absolutely true. The problem, my concern, my concern is that we’re still 31 years after passing the Americans with Disabilities Act, still fighting for basic implementation of that foundational disability civil rights law. And we see it in sector after sector after sector. We have transit systems that are inaccessible—operated by government—that are supposed to be accessible, and 31 years after the ADA said they had to be accessible, still aren’t. We have continuing fights in higher education and K through 12 education over access and accessibility for disabled students. We see it in the workplace. We’re seeing workplaces now abandoning the accessibility accommodations like telework, like remote work that they said could never happen, right? And then there was a pandemic, and it was to the benefit of their bottom line, so they all pivoted to this thing that they said they could never provide to disabled people. And now that they think incorrectly the threat of the pandemic is over, they’re pulling back.

What I’m concerned about, though, is we don’t yet understand very much about COVID and about the long-term effects on health of COVID. The epidemiology is still in its infancy, and unfortunately, the process in the United States for something like disability benefits is, as you know, as a former legal aid lawyer, it’s adversarial. It’s fundamentally adversarial. Disabled folks applying for SSI or SSDI, the disability safety net programs, have to convince the Social Security Administration that they meet really stringent (if you’re looking at a sort of big picture view) really stringent standards, criteria for disability. And we don’t have the sort of research yet—the epidemiology, the immunology, the long-term studies—that people would need to rely on in order to convince the Social Security Administration that they’re really quote-unquote “really disabled.” Because all too often our policy approaches disability from the standpoint of we assume you are faking until such time as you can prove, via a lot of evidence, otherwise. And that’s the sort of fundamental shift that we need.

VALLAS: And that is absolutely a part of what today’s conversation will be. I wanna move into the kind of bigger picture question here, right? Because obviously, there’s what is necessary to be prepared for this influx all of a sudden of a huge number of people with a not-well-understood condition. But there’s a broader conversation to be had as well, and it’s one I’ve been having with each of you in different ways and sort of on the sidelines of the broader economic recovery conversation that we’re having as a nation right now.

So, on the one hand, there’s the question of like, what are the policies we need to put in place to ensure that long-haulers aren’t left out to dry? But on the other hand, there’s this bigger question of what has COVID and this COVID pandemic—which we’re still living in right now and which we still don’t fully understand—but what has this COVID pandemic experience laid bare about the immense gaps in our policy infrastructure for people with disabilities and chronic illnesses more broadly? And Matt, you started to go there a little bit in sort of rolling back the clock and helping us to understand and remember that even though we’re 31 years after the signing of the Americans with Disabilities Act, the ADA, the watershed civil rights law that is the law of the land in the U.S. for people with disabilities, that we still have a long way to go and had a long way to go even before COVID was a household name.

We started the caring economy conversation last week with child care and early learning, and in part, wanted to do this week’s episode because there’s a huge piece of that conversation that is really, really critical for the disability community. And that is something called Home and Community-Based Services or HCBS. So Matt, I’m gonna stay with you for a moment here, but I’m gonna ask you to help us to get out of the alphabet soup and to put this thing called HCBS in human terms. It’s a huge part of the answer to the question of what are we still missing when it comes to America’s public policy infrastructure for people with disabilities.

CORTLAND: Home and Community-Based Services fundamentally, if you wanna think about it at its most basic level, it’s the alternative to the question of, what do we, as a society, what support, what services do we choose to offer to folks who are disabled? Right now, in the United States, the answer to that question? It’s nursing homes, it’s congregate care facilities, it’s institutions. It is warehousing disabled Americans, disabled human beings, in facilities that are, to put it bluntly, death traps. More than 138,000 human beings, 138,000 people, died just in nursing homes during the pandemic due to COVID-19. And they died because we stack people in these facilities that are really quite hellish, two, three, four people to a room. And there’s really just no way, there is no way to implement good airborne infectious disease control measures when you have three or four people, even two people living to a single room. And the staffing in these places isn’t, you know, the staff ratios, the sort of nurse-to-patient ratios that you would find in a nursing home, they’re not good. They’re terrible. And so, we lost 138,000 people who died in these facilities just during the pandemic.

The alternative? What is the alternative? The alternative is instead of forcing people who need some help with their activities of daily living, maybe need some help getting around, maybe need some help preparing food or eating, instead of forcing them out of their homes, tearing them away from their families, their friends, their loved ones, their community, their church, whatever the case may be, and forcing them into a facility, the alternative is to offer them those services and supports where they are in their home, with their loved ones, with their family.

And that’s what Home and Community-Based Services are: It’s home care. It’s providing what folks need to be able to age in place instead of saying, “Oh, you’re too old now. You have to go into a home, a nursing home.” It’s saying, actually, you know what? We know how to provide the services that will allow you to stay in the place that you want to stay. You wanna stay at home? We’re gonna provide these Home and Community-Based Services to allow you to do it. That, fundamentally, is all HCBS is. It’s giving people a choice, an option to stay at home, to participate in their community, to live their lives.

And it’s not just folks who are older; it’s folks at every age. It’s adults who have jobs. In that, I emphasize jobs because so often when I have these conversations with people from outside of the disability community, they’re not aware. It just has never occurred to them that a disabled adult who relies on Home and Community-Based Services could have a job, could be an employee, could contribute to an employer. But that happens in every state in this country every single day. So, that’s really what we’re fighting for. That’s what we’re talking about. And it’s also, you know, Elena’s here. It’s also about kids. That’s what we’re fighting over.

VALLAS: And Elena, that’s exactly where I wanted to bring you in next. We heard last week from Julie Kashen, who is a fellow senior fellow—a fellow senior fellow, if that’s a phrase I can use—at The Century Foundation. We also talked with Zero to Three’s Amanda Perez about what child care and early learning mean to families. And that’s something that I think is probably a lot well, a lot better known and kind of higher visibility in the caring economy and family policy conversation.

But how does Home and Community-Based Services, HCBS, which Matt was just breaking down and describing and putting into human terms, how does HCBS fit into the broader caring economy conversation? And in particular, why is it so important to families with kids with disabilities and complex medical needs? It’s been a huge priority of Little Lobbyists in the context of this Build Back Better package, as I mentioned up top.

HUNG: Yeah, absolutely. It has been our top priority for Little Lobbyist families. At the heart of the care economy, this is really, you know, this is really about just caring for. And so, I’m just gonna echo what Matt just said. Whether it is our kids, our spouses and partners, or our aging parents, whether it’s blood family or chosen family or marginalized communities like the disability community, it really is about just anyone who needs care. And if we’re all going to be fortunate enough to live a long life, we’re all gonna need care at some point.

So, for me, what we’ve seen during COVID, during this pandemic, it’s about the ability to be home with my family. A lot of these facilities, there were no visitation. That means if your loved one is in an institution, you couldn’t visit them. But more than that, it’s getting the care at home. It’s getting the care at the setting of your choice, which is what, you know, home is where most people, a great majority of people, choose. And I would say that the more that I learn about, as well, I will say, disability history and as well as disability present, as Matt just very vividly illustrated, the more that I speak to families like mine, the more that I am convinced that Xiomara would not be alive right now if it weren’t for HCBS, if it weren’t for Home and Community-Based Services. She would certainly have nowhere near the quality of life that she has now. So, when I say that this is a top priority, it is not an exaggeration to say that caring for Xiomara and caring for kids like her and adults like her, you know, everybody with complex medical needs and disabilities, this is a life and death matter. It really is. Not getting the care that we need, it’s not just an inconvenience or a frustration. It can literally mean death.

And I believe that Xiomara wouldn’t be here without Medicaid, which pays for her Home and Community-Based Services. HCBS is the one-on-one care that she gets. It’s the medical equipment that literally helps her breathe. That’s not a “special needs,” and I’m using air quotes here ‘cause you can’t see me. But it is a need. And that helps feed her, monthly supplies that she needs, the therapies that help foster her independence (her physical therapy and occupational therapy), her speech therapy so she can communicate with us. All of this, all of this HCBS is provided to Xiomara on her schedule to meet her needs, [laughs] her moods. And anyone who has ever met her knows she’s the boss, right? So, she wouldn’t get this kind of care, this individualized care, in an institution or in a facility where we’re operating by somebody else’s schedule. And so, I think the

piece of it is where we center to the person who’s receiving the care. And that is just so, it really is the difference between, I think, between life and death.

VALLAS: And obviously, what you’re describing, Elena, in terms of the care that Xiomara is able to get is the success story, right? It’s when someone is actually able to access these services. But unfortunately, as Matt was describing, we have a picture instead where the rule is waiting, languishing on waiting lists, right? And the exception in many cases is speedily being able to access Home and Community-Based Services so that people are able to remain in their homes instead of being shipped off to and warehoused in institutions.

Matt, talk a little bit about—and of course, this, as I mentioned up top, is the broader subtext for why it’s so important to be talking about HCBS right now in particular—but what’s in the Build Back Better plan as it stands when it comes to HCBS? What have folks been fighting for, and what would it mean to the disability community if that bill can actually get over the finish line with a significant investment in HCBS as part of it?

CORTLAND: After he won election, President Biden really put together a strategy to realize his vision of building back better. It was more than a slogan. It is meant to be a comprehensive suite of investments to really transform the way that the American economy and policy system does a whole bunch of stuff. And one of the things that President Biden envisioned as being foundational to this Build Back Better agenda is a massive investment, quote-unquote “massive investment” in Home and Community-Based Services. What that looks like right now as we’re talking today here at the sort of middle of November is $150 billion over 10 years in new HCBS money that would be dedicated to first, moving folks who are on these waiting lists, these more than 800,000 people who are on waiting lists for vital services that allow them to just live their lives, moving them off of those waiting lists and providing them services.

And this is a program that’s administered by the state. So, it’s a fairly, how do I put this? $150 billion is more money than has, it would be a historic investment. Is it enough money? No. No, it’s not. Not to do everything that needs to be done, but it is far more money than has been invested at once. It’s new funding. It would really address this injustice of waiting lists. There are something like 28,000 children in Texas on waiting lists, the waiting list for Home and Community-Based Services. And talking to physicians in Texas, oftentimes when they’re sending new parents home from the hospital, they tell them, “You need to get on the waiting list right away so that by the time your kid is five or six or seven years old, there may be a slot for you. You might’ve moved far enough up that line.” So, that’s what the $150 billion investment in Home and Community-Based Services that the president envisions as part of Build Back Better would really do. And it’s a major step forward for disabled Americans if we are able to realize this investment to win this fight.

VALLAS: And staying with HCBS for a moment, and then we’re gonna turn next to some of the Social Security conversation that Kathleen was starting to bring up before, because that is hugely important here as well. Elena, there’s a workforce side of this in addition to the care and services side. And in some ways, that’s analogous to the child care and early learning conversation that we had last week on Off-Kilter, given that it’s not just a problem of families not being able to access care, in that case, because of incredibly high cost and unaffordable costs at that. But it’s also a state of affairs where we have a massively underpaid and undervalued workforce.

There’s real similarities in this context as well when it comes to HCBS. There’s the care side of the equation. There’s also the workforce side of the equation with a similarly devalued and underpaid but incredibly valuable and skilled workforce. This is something you have experienced, your family, and as someone who spearheads making sure that Xiomara’s care is all in place the way it needs to be. And you often talk about the difficulty of being able to get skilled nurses, skilled medical professionals as you need in your household for her to be able to get the care that she needs. And that’s a big part of what you at Little Lobbyists try to ring the alarm bells around as well.

HUNG: Yeah, absolutely. And you previously said that we’re looking at Xiomara as a success story, and I certainly hope that is the case. I know what is possible when disabled kids get what they need. And that also means then, that I know what is at stake when they don’t. I know that intimately well. I’m not gonna sugarcoat it. It has been really difficult getting the care that she needs, getting her medical team in place. It’s been extremely challenging. And so, part of Build Back Better, part of getting what you need is also ensuring that we have the medical professionals who are properly paid and trained.

I think back to her early years when we went through 36 nurses, 36 home nurses, in about 10 months. Now any parent who has ever hired a nanny or a babysitter or toured a daycare center know the time and effort that goes into finding a caregiver that you can trust. For us to go through that many people, it felt like our home was a revolving door at times, and these nurses quit for a number of reasons, or we let them go for a number of reasons because they either weren’t properly trained, or the pay just wasn’t sufficient for them. They weren’t earning a living wage, and that’s a huge problem. We had nurses quit because they found another job that paid 50 cents an hour more or $1 an hour more. That was a difference for them to go from one job to another. That meant that then my family, my daughter, wouldn’t get the care that she needed. But that also meant, you know, and I had to sympathize that these nurses weren’t earning a living wage and that they had to constantly go from one job to another to make ends meet. Some of them, a lot of them, work two jobs, three jobs. So, that is definitely part of the conversation here.

VALLAS: And such an important part of the conversation as well. Matt, I’m gonna give you the last word on HCBS before we move over to Social Security. And I’m gonna make you put on your day job hat as pollster in addition to disability policy expert, and I’m gonna ask, what do we know about American voters’ views when it comes to HCBS, Home and Community-Based Services? And in particular ‘cause polling of American voters is a big part of what Data for Progress does, but a new piece of what you guys also do, which is incredibly important and very exciting, is to poll disabled voters to ask what people with disabilities actually want. What do we know about not just what voters overall think of HCBS and of this Build Back Better proposal that you were describing before, but what do we know about what people with disabilities actually want when it comes to, is it living at home with these services, or is it living in an institution?

And I ask that question in part because there is a straw man that needs to be taken down who keeps showing up in the mouth of certain folks who are not huge fans of HCBS and who are actually huge proponents of institutional care. And I just I know you have a lot of thoughts on this issue, and it is one of those myths out there that really does need to be brought down as often as there is occasion to do.

CORTLAND: Back in September— So, let me just start by saying everyone has sort of watched this sausage being made as the legislative process has unfolded, and it’s never pretty. It’s been particularly bad. But as part of this process, some folks who are not enthusiastic about Home and Community-Based Services, who have a different conception of the proper role of disability and disabled Americans in American public life—and it’s really the notion that we shouldn’t be part of that life, part of public life. We should be sort of locked away in institutions—well, disabled Americans don’t agree. Eighty-nine percent of people who self-identify as disabled would prefer to live in their own homes and receive support and services in their own homes. And that holds true across partisan lines. It’s 90 percent of Democrats wanna live at home. Ninety-six percent of independent and third-party voters and 81 percent of Republicans who identify as disabled want to stay in their own home and receive the services and supports they need in their own homes.

And the thing is in this moment that’s also popular with just voters generally, these investments in home and community-based care, Home and Community-Based Services were among the most popular provisions in Build Back Better when we at DFP polled on this back in September. Net support for these HCBS investments was 67 points, which was coming out even ahead of modernizing K through 12 school buildings and electricity grid modernization and Medicare drug price negotiation. So, it is both popular with Americans generally, and it is popular with disabled Americans. And those who argue otherwise are just simply not speaking for the disability community.

VALLAS: And yet speaking for them they often do attempt to do. So, part of why I needed to give you that soapbox to jump on just for a moment.

So, Kathleen, I wanna bring you back in and take us now into the income security, the Social Security side of this conversation. You started to go there just a little bit, but we’ve got to pull on this thread as well because a lot of advocates who care about Social Security in particular, myself included, and I know all of you who are part of this conversation as well, have been really pretty worried that we’re about to learn another quote-unquote “COVID lesson.” I put that in huge scare quotes, and we’ve got no shortage of scare quotes being logged in this episode, so I’ll throw mine in as well. But we’re about to learn another COVID quote-unquote “lesson,” many of us are worried, which is that we made it way too hard to access disability benefits in the U.S. And that being a pre-pandemic problem that now is about to be on full display as COVID long-haulers start to try to access the Social Security disability system. You started to talk a little bit about this, but Kathleen, help us understand, what are we starting to see? What are you expecting? And what are we already hearing from COVID long-haulers who are starting to try to navigate the disability system, many, unfortunately, with not great success?

ROMIG: Yeah, I think you started in the right place, Rebecca, which is before the pandemic. And it is very difficult to qualify for disability benefits in this country. About one in three applicants for both SSDI and SSI ultimately end up receiving benefits, and that’s after all levels of appeal. And often those appeals can drag on for months or often years. And so, it’s not only, even when you’re quote-unquote “successful” at submitting a disability claim, you can often lose your house in the meantime. Your marriage can dissolve as you’re waiting for the Social Security Administration to come up with its decision. And so, it’s a really, really difficult process. Often people are not successful. And there’s been research on people who are denied disability benefits and how they fare in a labor market and what their wellbeing is like after that. And many of them are too sick to support themselves to work. They have a hard time getting by. The even denied applicants are often really, really struggling.

So, that’s sort of the backdrop before we went into the pandemic. And now we’re 20 months into the pandemic, and the Social Security Administration has closed its field operation for this entire time, except for now on a dire-need basis. And what that did was create a huge access barrier for people with disabilities in particular. We saw SSI applications fall to record lows. They’re still very, very low compared to previous years. We saw Social Security Disability applications also fall significantly. And when you drill down into who’s not applying, it’s the most marginalized groups. It’s people who are poor, people with limited English proficiency, older people. And so, we know that fewer people are applying than even normal times. And we also know that the need for these benefits is greater than in normal times. We know that we’re experiencing a major health crisis and that there are more people who have qualifying disabilities for these programs, and yet we’re seeing far fewer applications than usual.

So, when SSA does ultimately reopen—and it is supposed to reopen in the new year—we are expecting to see a significant increase in benefits claims because we think that there are people, either people with long-haul COVID symptoms or with other disabilities, who haven’t made claims and who now will need to go and make those claims.

Another important point about SSA’s field office closures that people don’t understand, they say, Okay. Well, we’ll just apply online. That is possible for Social Security benefits. It’s, in most cases, not possible for SSI. There is no online application for SSI. For many of the types of SSI benefits, you have to do it in person, or you have to do it over the phone. And the phone lines, as you can imagine during this time, have just been a nightmare. And so, it’s not surprising to know that it’s been difficult for people to access these benefits during this time, even though the need is greater.

VALLAS: Well, and staying with you for a moment, Kathleen, I mean, this is something that again, you and other advocates and myself and Matthew, I mean, many of us have been ringing the alarm bells about for pretty much the entire length of the pandemic, but also well before it as well.

That being said, there’s another stage of this, right, that’s not just access, it’s also how incredibly strict that definition of disability is. And you started to get into this. But for those of us who have any level of experience with the Social Security Disability system—and I’m a former legal aid lawyer, as listeners of this show will be familiar. Matthew, you have familiarity with both sides of the system. And Kathleen, you are one of the nation’s deepest experts in this system—as anyone who knows pretty much anything about Social Security Disability benefits can tell you, not all conditions are created equal in terms of the pathway that people experience and the route to approval or denial that they face. And a lot of us have been remarking that COVID long-haulers are often, in many cases, presenting with symptoms that are very similar to conditions like something called chronic fatigue syndrome, or ME-CFS, fibromyalgia, and a number of other conditions that are also not well understood and were not well understood prior to the pandemic, either, but which disproportionately tend to result in nearly automatic denials because they can be so hard to prove.

And Matthew started to go into this before, right, about this sort of presumption that people must be faking that’s sort of baked into the system that requires mountains of medical evidence to functionally disprove, to result in an approval that actually then brings the survival benefits that people are seeking by applying for Social Security Disability Insurance or SSI. Talk a little bit about some of those concerns and some of those similarities that we see between COVID long-haul symptoms and some of those conditions that have been pretty much a one-way ticket to a denial pre-pandemic.

ROMIG: Yeah. Well, I think you’re right to bring up the strict standard. And what the standard is for both SSI and SSDI, disability benefits, is a condition, a serious medical condition expected to last 12 months or result in death and which precludes work above a certain amount, which is basically a sub-poverty wage. And so, it’s not only strict, but it’s also complicated. You have to, you know, that you have disability examiners in every state who decide these cases. They’re not doctors. They’re not nurses. They’re government employees who are tasked with taking this very strict standard and also mapping it on top of a very broad set of possible conditions, many of which are really complicated. And COVID is one of the most, long-haul COVID is one of the most complicated things they’re gonna see, and they need to have some specific guidance to figure out, how does this condition, how does this person who has applied for benefits match up against this very strict medical and vocational standard? It’s pretty complicated, and they simply don’t have the guidance to do that right now.

Ways and Means Committee Chairman, over a year ago in summer of 2020, wrote a letter to SSA, saying, hey, you guys should really engage some medical experts to study this and to figure out what does long-haul COVID look like medically in the long term, and what do those symptoms mean for people’s ability to work? Well, SSA still hasn’t done that. They haven’t contacted the National Academy of Sciences as recommended by the committee [chuckles] and tried to figure out and give guidance to their employees about what this is gonna look like. And so, I’m really worried that many of these people are going to be wrongfully denied. I think it’s really easy to decide a case when you have proof from your doctor that you have six months to live. Okay, that clearly is expected to last 12 months or result in death, okay. But when you have a neurological condition like brain fog, or when you have a physical condition like chronic fatigue where you can hardly do your normal activities of daily living, that’s harder to measure. And often those claims are just, like you said, simply denied.

VALLAS: And Matthew, I wanna bring you in here for just a quick note on this before we move on because Social Security Disability Insurance, SSI these are topics that you spend a lot of your time thinking about and that you and I have spent a lot of time working on together, including through the Demolish Disabled Poverty campaign. You mentioned before that we have a system that’s effectively set up to deny people, and this is actually something we’ve done whole episodes of Off-Kilter about in the past. So, for a deeper dive, I will refer our listeners to some of those prior episodes, including one we did as recently as May of this year, just before we brought Off-Kilter over to The Century Foundation.

But it feels just incredibly important before we leave this piece of the conversation to also connect some of the problems we’re highlighting to some of the policy solutions that are out there. Kathleen was talking about the critical importance of the Social Security Administration starting to get a better handle, or doing what is possible to get a better handle, on understanding COVID long-haul symptoms so that we don’t see a spate of wrongful denials. But there are a whole set of other policy asks, many of which are not actually new ideas and pre-date the pandemic, but which the advocacy community has been pushing for, both within SSDI and within SSI. Talk a little bit about some of those policy asks as we sort of round out our conversation about the gaps in our policy infrastructure that this pandemic has shined a light on.

CORTLAND: There are just so many, so many different things that we can do to improve this system. It’s hard to know where to start, but since Kathleen was talking about being sent to these, the government employees to evaluate whether or not you’re disabled, one thing we could do is trust people’s own doctors. We no longer do that. When the Trump administration came into power, they changed the rules. And now they can send you to a physician who’s not yours, who may spend five minutes, if that, looking at you, “examining you,” quote-unquote, may never read your medical record. The Social Security Administration can choose to take the word of that person, that random, over your own treating physicians who know you, who have treated you, who have done all sorts of diagnostic workup and tried different treatments. That’s something that the administration could change, could change through a little setback so that we listen to people’s own clinicians. There are just so many different things that we could do.

We could make it easier to apply for SSI. Because Kathleen is absolutely right. It is a nightmare. Even as a lawyer, it was incredibly difficult for me to do my own SSI application. There were all sorts of hoops that, as a disabled person, made it just incredibly difficult. You know, it was hard for me to get to a field office because of the disability that required that I get to a field office in order to apply for SSI! It was this vicious circle. And that’s stuff that the administration can do sort of on its own. It doesn’t need congressional action.

There are, as Kathleen was saying, there’s a lot of room around these medical standards, the rules that SSI uses to evaluate someone and the medical evidence that they’re presenting. That is out of date, just massively out of date. Doctors no longer use the terminology. It’s out of favor. It’s not accurate. It’s not correct. Doctors update their knowledge base as medical science progresses. And so, the way that my doctors talk about my own chronic, debilitating illness doesn’t match the way that the Social Security office, Social Security Administration talks about my illness. That needs to be updated. It should be updated on an ongoing basis, and it’s going to really need to be updated in order to help folks with long COVID.

There just so many different things that the administration can do on its own to improve this process, to make it less adversarial and easier for Americans who really need help. Just they need help, and the Social Security Administration is supposed to be there to help folks. And all too often it does the exact opposite.

VALLAS: And I’m gonna put in a shameless plug as well for a couple of policy fixes that I would hope could be considered to be a low hanging fruit, but which we know are not, unfortunately, because they don’t have any Republican support and are not things that can be done right now because of Senate budget reconciliation rules. And that’s to eliminate the five-month waiting period for Social Security Disability Insurance and the 24-month waiting period for Medicare, which provides the primary source of health insurance for disability insurance beneficiaries. So, there’s a piece of legislation that has been introduced in the past called the Stop the Waiting Act that would start to do that, but it’s not something we’re seeing happen anytime soon and just adds to those horrible waiting periods that Kathleen was describing that really mean that thousands of folks every single year—and this was before the pandemic—end up dying, waiting for disability benefits, something that is an epic injustice that we should not have needed a pandemic to shine a light on to be able to fix. And yet here we are.

So, in the last few minutes that we have—and I knew getting into this, I was gonna want two hours with you guys instead of one hour, but one hour is what we have—so, in the last few minutes that we have, I’m gonna give each of you an opportunity to offer some closing thoughts about this moment that we find ourselves in, this COVID pandemic moment, and what it might bring in the way of opportunities for a paradigm shift in how we view chronic illness, how we view disability. And obviously, there are policy implications there, but there are cultural and sort of societal implications as well.

And Kathleen, I’m gonna start with you because I know part of what you are gonna talk about is also something we would be remiss not to bring into this conversation, which is another major gap in our policy landscape but which also does not appear to be addressable any time soon. And that, of course, is paid leave.

ROMIG: Yes, absolutely. And I think a lot of the conversation about paid leave is about moms and babies, and we really need to be looking at this more broadly. The proposal has always been about Paid Family and Medical Leave. It’s for people, for all workers, who might become sick or hurt and need to take significant time off work and don’t have that available at their work. It’s also for family caregivers of people who are sick or hurt, in addition to those moms and dads and babies who need that time off of work. And that is a missing piece of our Social Security system. It was something that we have been talking about for 100 years now, dating back to even before the 1935 Social Security Act, and it was certainly part of the conversation about that act. And it’s one of the reasons that workers need to take time off from work and have their wages replaced. Just like they do when they become disabled over the long term for SSDI, just like they do when they retire at the end of their career for Social Security retirement benefits, they need those lost wages replaced. And that’s just a really big missing piece of the puzzle. And I think COVID brought a lot of attention to that.

Congress actually, on a bipartisan basis, did pass some paid leave for a subset of workers, for COVID-related reasons: if you had COVID, if you were exposed to COVID, caring for a family member with COVID, or you had a child who was unable to go to school or child care because of COVID. And so, I think it was refreshing, finally, to see bipartisan acknowledgment that we needed comprehensive paid leave across all these different reasons. But unfortunately, that was temporary, and that was only for COVID reasons. But I think that in the wider society, many people’s eyes have been opened to this need, and in fact, that policy is extraordinarily popular. And so, I think it’s really important that it’s something we continue to fight for.

VALLAS: And unfortunately, at this moment, as of when we’re taping, it continues to be something that advocates in Washington are not optimistic will actually make it through the Senate because of a particular senator from West Virginia who has gotten a lot of attention on this show in recent weeks, well-deserved attention, but not the good kind. But definitely something we need to keep talking about and which would be great to hope could happen as part of this larger social policy legislation.

Elena, I’m gonna go to you next with the same question around how this moment might offer an opportunity for long overdue paradigm shifts in how we view, how we understand, how we think about, as a society, chronic illness and disability as well.

HUNG: Yeah, thank you. Thank you. This is such an important conversation. And I will second your note about setting aside two hours or more for this. I wanna take a brief moment and just say thank you to Kathleen and thank you to Matt for breaking down the application process and showing the reality. It really is not that easy to apply, and I hope that that helps, I hope that helps shed a light to those who think that applying for benefits is a simple process. And so, at the risk of sounding like a broken record—maybe we do need to keep repeating this—I’m sitting here, and I’m remembering the time that I spent sitting in the Social Security office for six hours. Six hours. Unnecessarily dehumanizing experience. Like Matt, I am also a lawyer. Xiomara’s father is also a lawyer. That means we read fine print for a living, and that background still made it near impossible to get our applications approved. I know Matt has written about this extensively. You know, you really shouldn’t need to be a lawyer to get lifesaving care.

And so, I would say that my final words on this for this conversation that lifesaving care really, for Xiomara, is about getting a chance at childhood. It’s about playing with her big brother. It’s about watching her favorite show, Daniel Tiger, on repeat. And so, I want that piece to be what it really means. I really can’t think of anything more important than that, of giving our disabled kids a chance to grow up and fighting for a quality of life for all those who need it.

VALLAS: And Matt, you’re gonna get the final word here. And it’s obviously a big question, and there’s a lot of paradigm shifts that I know you would like to see this moment bring about, but you’re gonna have the great challenge of summing it up in just a minute.

CORTLAND: You should not need to be a lawyer. Unless we’re going to send literally everyone, literally everyone who needs these services to law school, we need to change the system. And it’s more cost effective not to spend $100,000 a year sending everyone to law school. You should not need to be a lawyer in order to access disability benefits. You shouldn’t need to be a lawyer in order to understand the Home and Community-Based Services system. You just should, by virtue of needing whatever the services are, get them. And we are so far away from that point, from where we should ought need to be as a country that any progress in that direction should be welcomed and fought for. And we are in those fights.

VALLAS: And an idea that has been gaining some real traction on the Hill. So, something I would love to have you back to talk about at some point, all of you, should we actually see it start to gain further traction, is the idea for, why don’t we set up a navigators program to help COVID long-haulers access this web of services and supports that can be so incredibly Kafkaesque and inscrutable? It’s not the big-picture fixes that we need in terms of structural change, but it could certainly help folks at least get their heads around how to access the kinds of services and supports that, as you’ve all been reiterating, can really be life sustaining and lifechanging in so many ways. So, there’s so much more that we could get into, but we’re gonna have to leave it there and not for any lack of great sadness on my part.

I appreciate all of you for taking the time for this incredibly timely and important conversation, and I look forward to having each of you back on the show at various points to continue to keep us posted on each of these streams of policy priorities.

Kathleen Romig is a senior policy analyst at the Center on Budget and Policy Priorities, and you can find more of her work on these issues in our show notes. Elena Hung is co-founder and executive director of Little Lobbyists, a family-led group advocating for children with complex medical needs and disabilities. She’s also, most importantly, Xiomara’s mom. And lots more about how you can learn more about and get involved with the Little Lobbyists in show notes as well. And last but not least, Matthew Cortland is a senior fellow at Data for Progress, and lots of his work in show notes, too, including some of that polling which he referenced. Thanks to all of you for taking the time, and most importantly, for your incredible work on all of these issues. [theme music returns]

CORTLAND: Thank you.

VALLAS: And that does it for this week’s show. Off-Kilter is powered by The Century Foundation and produced by We Act Radio, with a special shoutout to executive producer Troy Miller and his merry band of farm animals, and the indefatigable Abby Grimshaw. Transcripts, which help us make the show accessible, are courtesy of Cheryl Green and her fabulous feline coworker. Find us every week on Apple podcasts, Spotify, or wherever you get your pods. And if you like what we do here at Off-Kilter Enterprises, send us some love by hitting that subscribe button and rating and reviewing the show on Apple Podcasts to help other folks find the pod. Thanks again for listening and see you next week.