ABOUT THIS EPISODE.

Dr. Scott Landes is an Associate Professor of Sociology at Syracuse University. Dr. Landes has recently published multiple research articles characterizing the greater risk of poorer COVID-19 outcomes faced by people with intellectual and developmental disabilities (IDD). His work highlights the vulnerability of this group during the COVID-19 pandemic. In this episode, he delves into this research and its broader implications for the COVID-19 pandemic and health equity.

EPISODE TRANSCRIPT.

[Music by Molly Joyce 00:00 – 00:15]

Bonnie: Welcome to Included: The Disability Equity Podcast, brought to you by the Johns Hopkins University Disability Health Research Center. This podcast challenges stereotypes of disability by sharing stories, data, and news. Each season digs deep into topics, offering multiple perspectives, and will expand your view of disability. We are your hosts. I’m Bonnie lin Swenor, director of the Johns Hopkins Disability Health Research Center.

Nick: I’m Nick Reed, assistant professor at Johns Hopkins University Bloomberg School of Public Health. Scott Landes is an associate professor of sociology at Syracuse University. Informed by his interest in medical sociology, aging and the life course, and disability theory, the majority of his research focuses on health and morality trends across the life course for those with developmental disability and for veterans. His other primary research focus addresses the intersections of intellectual disability in social theory. Dr. Landes has recently published multiple research articles characterizing the greater risk of poorer COVID-19 outcomes faced by people with intellectual and development disability. His work highlights the vulnerability of this group during the COVID19 pandemic.

[Music 01:34 – 01:42]

Nick: Dr. Landes, thank you so much for joining us.

Dr. Landes: Thank you for having me.

Bonnie: I, first, wanna start with thanking you for this work, which we, at the Disability Health Research Center at Johns Hopkins, think is so important and central to guiding policy. Before we really dig in, I wanted to ask if we can start with talking about data, which is one of our favorite topics on this podcast. We found it difficult to find datasets that capture disability appropriately, particularly in this time of COVID, I would add. Can you comment on if disability is underrepresented in health data, and what we could do to address that issue?

Dr. Landes: I think the short answer is absolutely, yes, emphatically. This was a pre-COVID concern, I’m sure that you shared, is that we just do not engage in adequate health surveillance of people with any type of disability in the United States. Other countries do a better job than we do, but we, in my mind, have failed miserably in this area. A lot of my career has been trying to find data sources that I can utilize in order to examine health outcomes, specifically for people with intellectual and developmental disability. There are some. The National Health Interview Survey, in particular, I think, historically, did a better job than many other surveys in including disability questions with one particular question about intellectual disability. Unfortunately, due to budget cuts, they’ve changed their survey and dropped that question. I know many of us advocated for that not to be case, but my understanding is they still chose to do so. There are other surveys. ACS, the American Community Survey, the Behavioral Risk Factor Surveillance, the Medical Expenditure Panel Survey, they do ask disability questions and allow for some semblance of a nationally representative sample and, I think, have been useful. However, there’s a problem, if we’re particularly talking about intellectual developmental disability, that these nationally representative surveys have tended to adopt the Washington Group questions, which, just to be honest, I’m a big critic of because the one—there’s six questions within the Washington Group questions that get at hearing disability, vision disability, physical disability. The question that would include people with intellectual disability is something to the effect of, do you have difficulty concentrating or remembering? Which might be people with Alzheimer’s disease, might be people with later onset dementia. It’s hard to really separate out who is being captured in that data question. I think, two levels to answer your question. One, yes, this is an issue where we, in the US, aren’t doing good data collection on people with disability in general. It’s even worse for those with intellectual and developmental disability. Then to the third part of your question, Bonnie, it’s been so obvious, during the pandemic, how this can really lead to negative outcomes. In my mind, it’s not the only thing that drives policy, but much policy is informed by data. If you don’t have proper data on a population, policy makers come out with their hands up in the air saying, “Well, what do we do? We don’t really know what’s going on.” The CDC did not, until later in the pandemic, even begin collecting basic demographic data on COVID-positive patients, such as even age and race, ethnicity, and gender. Things that we would think are basic. I think there has been some effort to possibly try to capture disability status, but it’s not been thorough, and it’s not actually been effective. We’re left with what you see in a lot of our papers, where we’re really trying to find datasets that are not typically looked at when we’re doing health surveillance.

Nick: I think that latter point you’re making is really poignant. I think we should just reemphasize that a lot of the datasets you’re talking about, the nationally representative surveys, we don’t get those until almost a year delay, at least. To inform policy in a public health crisis like this, there was no, at the beginning of the crisis, and there still is a haphazard surveillance method where we actually collect these demographic variables that would allow us to inform policy and allocate resources appropriately. It’s a real problem.

[Laughter]

Dr. Landes: The frustrating thing there, Nick, is that I—I remember, early in the pandemic, talking to a leader at the CDC who has some say over death certificate data and when it drops. I spend a lot of my time with death certificate data. It’s typically, like you’re saying, two years passed event before we can even see the initial data. CDC does have the ability to drop data early if they deem it a significant population, substantial population, sometimes they’ll say, and it’s necessary to go to the public health. I, early in the pandemic, was repeatedly talking to folks that are saying, “This is the case. This group is not going to do as well during the pandemic. It really would benefit us to see this data early.” They said, “Well, there’s just not enough cases. It’s not a sizeable enough population within the US. We don’t think we can justify doing so.” I don’t know what to say to that because, to me, that is not a substantial argument and not justification. I think, the data, that’s one of the frustrating things. In some instances, the data is there, but the systems that are in place don’t allow access to it until, like you’re saying, such a late point in time that it’s not gonna be as informative.

Nick: That is extremely frustrating. [Laughter] This question is for the researchers, I think, in our audience. In your pieces, you’ve used datasets that Bonnie and I are actually not familiar with. They’re a little bit more rare, and I think that’s because they’ve appealed to the narrowness of your work and what we just talked about, the fact that there aren’t many datasets out there. Can you tell us a little bit these datasets and why they did appeal to you?

Dr. Landes: Yeah, that’s a great question. You’re right, it dovetails exactly with the prior discussion about—especially at the beginning of the pandemic—well, even now—when we were looking around—and we had put a couple reports out saying we think there’s gonna be a  concern based on our earlier concern. We were really scrounging around trying to find, what data can we utilize in order to even try to address this topic? I wanna acknowledge one of colleagues who I work with on most of these is Dr. Margaret Turk at Upstate Medical Center. Upstate Medical Center, where Dr. Turk and also Margaret from [unintelligible 08:31] on that paper where they both are is part of the TriNetX network. TriNetX is a federated consortium of—I think it’s 42 to 48 medical providers. They talk about being global. I think 80 percent of the providers are in the United States, though. They’re typically university-based hospital systems or medical schools that buy into the TriNetX network. As part of doing so, they submit real-time electronic medical records to TriNetX. As part of the process, as a submitter, you also then get access to these real-time de-identified electronic medical records for everybody within this consortium. We used that on the initial paper and, actually, are just getting back to it with a follow-up paper. The first one, we used—they’ve got two networks. TriNetX has a COVID research platform that is specifically just devoted to patients who are diagnosed as COVID positive. Then, they also have a broader research platform that includes COVID-19 patients, but also includes patients who were never diagnosed with it. Our first paper, we used, like I said, the COVID platform. At the time—this was May, I think, if I recall correctly, when we were doing this paper—there were about 30,000 patients within the TriNetX platform who had a positive COVID-19—lab-based confirmed positive COVID-19 diagnosis. In that paper, we were able to look at case fatality. Case fatality being the number of deaths that have occurred within the population that has been diagnosed as COVID positive. Your numerator is deaths. Your denominator is cases, positive cases. Compare case fatality rates between people with and without intellectual and developmental disability. What we found in that study is that the case fatality rates were, indeed, higher for people with intellectual and developmental disability, but only at younger ages, under the age of 74. Once you got to 75 and above, similar case fatality rates—which I think makes sense to me if we think about [unintelligible 00:10:42] frailty that a lot of people with more severe medical conditions died at an earlier age. When you get to older age groups, there’s a lot of similarities, more than differences, between those with intellectual and developmental disability. That’s the first one, TriNetX. Our other two papers—the second one, to me, is extremely unique because we actually were—after we published the TriNetX paper, about that time, we were contacted by a group called New York Disability Advocates, which is a consortium of 100 and something providers around the State of New York, who provide 50 percent of the residential group home capacity for the state. They actually, to me, were very progressive as providers in saying, “Look, we know the data is gonna be extremely important to understand what’s going on. We’re not certain that this data that is being collected by the state will be shared in such a way that we can use it to help guide our decision making. We are taking it upon ourselves to do a weekly survey of our providers. We are asking whether you’d be able to come on board to help guide us in the data collection and then in the analysis.” Actually, to me, are very—were not only very progressive, but courageous to say, “We’re willing to then hand you the data, and you do what you want. We’re not gonna take any”—they didn’t want final decision on what’s published. They said, “Just publish what’s happening, whatever it might be, because we think this has to get out there.” I’ve worked with New York Disability Advocates now, we’re going into, 10-11 months where they do this weekly survey. We’ve been tracking 63 of their providers every week for the past 10 months, data collection and then cleaning it. Specifically, we’re looking at trends both in cases and case fatality rates over time. Like you’re talking about, this is data that I don’t think I ever would’ve even considered prior to the pandemic because I tend to dwell in the world of nationally representative data. To me, it was—and I got asked this question by a colleague. They were like, “Are you not concerned that the data you’re utilizing is biased and that you would be better waiting until representative data is available?” What I said was, “I think I would take that stance if this were not a crisis and people weren’t dying, especially at a disproportionate rate.” In times of crisis, you’ve got to take on strategies that are unique and different in order to really understand what’s going on. We try to admit in our work the unique limitations that are there. What we have clearly shown, within the NITA data, is that the case rate in these group homes is trending between about three and a half to four times higher than the general population. The case  fatality rate is staying consistently between 1.9 and 2.5 times higher than we’re seeing in the New York general population. Now I’ll take you, just real quickly, to our third set of data, where we jumped in—California is actually, among all the states, doing the best job of sharing data. Their developmental disability service system is publicly sharing. They drop, maybe, weekly data where they provide cases and deaths for all people who are receiving IDD services across the states. They do it by type of service receipt. The question we were at by the time we hit the California is, okay, we’ve established that there’s disproportionate outcomes. Are they consistent across the board, or do they vary by residential setting? In the California data, what we were able to show was going on California is that the case rate was lower for people with IDD than for the state, overall. When you consider people with IDD as one homogenous population, the case fatality rate was higher than the state. However, when we broke it down by where people lived, it really told a different story. People with intellectual and developmental disability living in their own or family home, so possibly less staff interaction and people coming in and out of the house, had a case rate that was lower than the state. Their spread of the virus wasn’t as advanced among people living in their own or family home, which makes sense. Their case fatality rate was slightly higher in the state, about 1.5 times higher, but not substantially higher. Different story among people living in congregate settings, which is what we would expect. People living in congregate settings with more residents had a case rate that was much higher than the state, sometimes five, six, ten times higher. It really depended on the amount of residents per setting. People living in a type of residence that provided 24-hour nursing care, indicating more medical need, had a much higher case fatality rate. Which, to me, is just so logical. Spread is about the density of the setting, how many people are there, and fatality, like we see in the general population, is very much about preexisting conditions and medical need. I think all these datasets are unique in their own way. All are datasets that, like I stated, I don’t know that I would’ve considered prior to the pandemic, but all, in my opinion, are helping give us a different piece of the puzzle as we try to understand exactly what might be going on.

Bonnie: Why do you think COVID-19 could possibly present a greater risk to people with intellectual and developmental disabilities, particularly in residential facilities? You just spoke a little bit about that, and you just reviewed the data amazingly, succinctly for our podcast, which we always acknowledge is really hard to do. What could be the reasons?

Dr. Landes: That’s a great question. I’m working on a couple studies now, Bonnie, that we’re trying to dig in deeper to understand, specifically, within these congregate residential settings what might be going on or what might be driving the rates. This is what’s been confirmed. Our suspicion, going in—well, really, three concerns. One would just be density of the living area. Back when I was doing direct services in this field, working with people with intellectual and developmental disability in Atlanta, a group home was capped at four residents. When we were closing institutions, that’s what was going on. That was the ideal. What’s happened is as you’ve had budget cuts over the year, states have allowed more and more to where, in the State of New York, I know the average of seven. A group home can go up to 15-16 residents, which is a lot of people in one home. Then you add in staff rotations on eight-hour shifts, and you, in a typical day, within some of these group homes, can have 20 people in a home. At least five to ten of them being people that are cycling into the home from outside, maybe even because of low pay, working two jobs. I know especially within the city, talking to providers, a lot of their providers work a second job at LaGuardia. You had people, as staff, that are coming in and out, who we don’t know their exposure to COVID. I think number one is just shared space. You’re sharing a bedroom. You’re sharing a bathroom. You’re sharing a kitchen. It makes it really hard to socially distance. Number two, for some people with intellectual and developmental disabilities, social distancing just might not make sense. It’s hard for us to understand. If you have some type of cognitive limitation, “Why do I have to wear this mask?” One thing I see most—I do it myself. My wife has really had to tell me not to do it. If I’ve got a mask on and about to sneeze, my tendency is to wanna pull the mask off. Just all these basic things that all of us had to learn that have been so different to us might be a little harder to understand. The other thing is there are some types of care—and I think many of us that don’t need direct care don’t realize this—that you can’t socially distance. It’s just impossible to do so. If someone needs help eating or bathing or just doing some of the basics, you’re going to have people really close to you in such a way that it would be easier to spread the virus. I think that’s number one. I think number two is some of the policy decisions that were made in the states, early on, were detrimental. I’m not trying to point a finger and give fault. I think policy makers probably did the best they could in the midst of the situation that they really had no idea how to best handle it. Some of the policy decisions, they did not provide it. I know in this state, the limitations in PPE—and the group homes were not seen as a priority setting for PPE—was really detrimental. You had staff among group homes having to go door to door after work to ask neighbors, “Do you have any extra PPE? I need it for my job.” That was just really an unfortunate situation. Obviously, we can’t talk about causality. It seems like it could have led to worse outcomes. I think the other thing—and we’re showing this—we showed this in some prior work, and we’re working on it more now—is typically, not always, but typically, individuals living in residential group homes, on average, have more medical needs than individuals that are not. That’s just part of the nature of the service. That’s one of the reasons, a lot of times, they’re there. Not everybody. You’ve got some people living in group homes who don’t have high medical need, but on average, people do. You necessarily, I think, have a setting that you’re going to have more spread because of density, because of the difficulty social distancing, and because of more medical need. In my mind, going in, we should have expected this. Our strategy should’ve been, okay, this is going to happen, what do we need to do to mitigate as much as possible? Where I felt like our strategy was, at least among policy makers was, “Oh, really?” We didn’t even think about this group. That’s always detrimental.

Nick: Yeah. I really agree with your last point there, too, that we could’ve expected this going in. You’ve hit on a lot of topics. I really, really just wanna point out for our audience, your research is following that traditional funnel where you went from the big picture, and you’re slowly telling us more and more at each level. I think it’s classic. Maybe for any student that’s listening, this is the perfect way you’re supposed to do this. You’re doing it in realtime, too, where we’re talking about the necessity to guide policy. I’m really interested in, if you don’t mind sharing with us, what are you thinking about for next steps? This is whatever you are willing to share. Also, what do we need to push policy further? Like you said, we [laughter] could’ve expected this. There were certain things we could’ve known. Now we do know. Now we have some evidence. What else is out there, and how can we change policy?

Dr. Landes: Yeah. Again, great questions. To your first question about trajectory, the studies that we’re just wrapping up now, and they should be out soon—we completed these initial studies. To me, we established these poor outcomes among folks with intellectual and developmental disabilities, especially those in congregate settings. The data was primarily the New York State data, the California data. Obviously, the burning question is, okay, are these two states unique? We didn’t think so. Can we find evidence that this is actually going on across the country? A study that’ll be coming out soon, we’ve got data from 10 states—well, nine states and DC—on folks with intellectual and developmental disability. They’re consistently showing the same thing with case fatality rate. Then, for people living in congregate setting across these 10 states, case fatality rate is about 3 times higher than the general population. The people living with intellectual and developmental disability in their own home or family home, case fatality rate about 1.5 times higher. To me, this is crucial, especially to the second point of your question about policy for vaccination prioritization. Typically, what we have seen so far is, if, in the instances, if—and I emphasize if—people with intellectual and developmental disability have received vaccination prioritization, it has typically only been for those in congregate settings and for their staff. I highly support that. I’ve advocated for it, and I applaud states that have done so. To me, it’s shortsighted to only prioritize people in congregate settings because what we’re showing in this data—what the California data shows and what we’re showing in this data is that the risk of COVID-19 is still more severe for people with intellectual and developmental disability, even if they’re not living in congregate setting. Just blanket across the board, what we’re arguing for is prioritization for everybody with intellectual and developmental disability, no matter where they’re living and no matter the type of disability. That’s the second piece that we’re working on right now is trying to understand differences in case fatality rate by type of disability. What we’re finding is very similar to some of what’s been published, where down syndrome seems to be an indicator. I applaud the CDC for recently indicating—or listing Down syndrome as one of the conditions that can lead to more severe COVID outcomes. What we’re looking at and will be showing in this study is that it’s not just Down syndrome. That while the risk related to Down syndrome seems to be more substantial than for other intellectual and developmental disabilities, for all intellectual and developmental disabilities across the board, there still is increased risk of COVID-19 death. I think going to the policy point of this question again, especially on vaccination prioritization, to me, this is integral at this point in time. You talked about what’s needed. Obviously, as a quantitative person, the first thing I’m gonna go to is data, but we’re already covered that pretty well. Data needs to be—data is being collected by states. To me, it needs to be shared publicly. There was an effort by senators Murray, Hasan, and Warren during the latter part of the Trump administration. They wrote a letter to CMS, to Medicaid and Medicare services, urging CMS to collect and publicly share data for people with intellectual and developmental disability. To my understanding, it went nowhere. Hopefully, maybe that effort can be picked back up, and the new administration would have a different perspective on that. I know that there’s been some talks among HHS staff about data collection and sharing on this population. I don’t wanna be rude. I’m an academic. I’m not a policy maker. I can say this. It’s time to quit talking. It’s time to do something. We know what needs to be done. We know the data’s being collected. Even if it’s not perfect, can we start at least sharing what data is out there? I think that would be key. I think, also, for people that are listening that have it, we need advocates in key places. If you have connections with policy makers and politicians who have ability to influence decisions, they need to be informed. We need to be sharing this information and these stories as much as possible so that people who are making decisions actually have this information. That’s where I feel like we’ve tried to fit into what’s going on, that we’re trying to provide evidence so that people who are concerned, individuals with disability or parents or families or providers or policy makers, that they can have a report that says, “Look, we’ve got evidence that this is—it’s not going well for this population.” I applaud you to things like a podcast, like you’re doing, that can get word out and say, “Look, this is important. This is going on, and you need to know about it.” Everything seems small when we’re doing it individually. To me, all of us working together, we maybe can build enough of a wave that we can change some things. It’s changed, yes, now. I don’t wanna be too pessimistic, but in some ways, what I have told others is it’s too late, in some instances, to change the whole system such that we can fix it. We can’t fix it during the pandemic. It’s just not gonna happen. We’ve got to start the process. Is this the end of the pandemic? Is this the last pandemic? We just don’t know. I don’t think we—if we’re responsible, we can’t be surprised again. The writing is on the wall. We’ve got to pay attention and say, “Okay, we know this is going on. We’ve got to really change the way that we do surveillance.” I think the other thing that I’ve learned from this—and I encourage other researchers to do consider it, if they’re so inclined to do so— is that there is data out there that we typically don’t pay attention to. There are individuals and providers out there—I was talkin’ to a self-advocate, the other day, who’s part of a group in Chicago of folks with disability who are collecting data themselves on the experiences of their peers and the population and what’s going on during COVID. It’s not getting attention because they’re not within the typical academic networks. What I’ve learned from this and where I think my growth is, is realizing that I need to be doing more collaboration with groups that are not within the mainstream of academia, but who have data that is not only just as valuable, but in some ways, gives more insight than we have in our nationally representative data. Maybe we can fill out the picture more by giving more robust consideration to the data that is out there and trying to figure out ways to include it within our research.

Bonnie: Thank you, Dr. Landes. I think that is the perfect way to end this conversation, in my mind, is a call to action for anyone who is tuning into this podcast, whether you’re a stakeholder, researcher, advocate, family member. That we need to come together, particularly in this moment, to tackle these important issues. To do a better job, really, to work together. I think that that is the future. Reach out [laughter] to Dr. Landes, to us, to someone, and we will work hard to do the same. We are all fighting this fight together. Thank you so much for taking time to be with us today, for the work that you’re doing. It’s truly incredible. We look forward to your work, more of the same. You have been listening to Included: The Disability Equity Podcast, brought to you by the Johns Hopkins Disability Health Research Center. / Included Podcast Episode 13 Scott Landes Bonnie Nick/Dr. Landes Nick: Thank you to our Included podcast team and everyone that made this podcast possible, especially Sabrina Epstein, Prateek Gaj wani, Curtis Ni shimoto, and our guests.

Music is by Molly Joyce. This podcast is supported by a Johns Hopkins Ten by Twenty Challenge grant. [End of Audio]