Sophia Crabbe-Field: So my first question to you is: Could describe sort of what happened in nursing homes during the pandemic?

Sara Luterman: In the United States, about 40 percent of COVID-19 deaths have occurred in nursing homes. That varies by state. I just wrote about Pennsylvania and they had about two thirds of their deaths occur in nursing homes. That’s a massive amount of deaths. And the problem is that nursing homes, the way that they’re designed, facilitate that kind of thing. This isn’t an issue that we didn’t see coming, or that was a surprise. It’s just one that we didn’t prepare for. So the Centers for Medicare & Medicaid (CMS) puts out reports regularly on the quality of nursing homes in terms of regulations and whether they’re hitting them. And most of the nursing homes that have had COVID-19 deaths had citations for problems with infection control preparation. Many of them had more than one citation over the course of multiple years. We haven’t had a disease that aggressive before, and it’s an inherently vulnerable population.

SC-F: So you talked about the citations that they already received. Why wasn’t it being better regulated? Does it have to do with the lobbying of the industry? What are the factors at play there?

SL: So that’s a good question. There’s a lot of issues at play. Lobbying from the industry is definitely an issue. The nursing home industry has been very aggressive lobbying the Trump Administration to reduce regulation and minimize liability for COVID-19 deaths, and other kinds of deaths even before this.

But another piece of the puzzle is Medicaid reform. About two thirds of the long-term care in our country is paid for by Medicare and Medicaid. So it’s also the majority of payments that go to nursing homes and the way that Medicaid is structured. It has what is called an “institutional bias.” So it’s required to pay for nursing homes, long-term care, but not home care. In most states, home care is sort of an optional thing that you get for by applying for a waiver. Usually there’s a huge waiting list because, unlike a nursing home care, there are caps on what’s available.

And the problem is that any kind of Medicaid reform right now is just really difficult because there are a lot of Republicans that are very interested in cutting Medicaid. And so having a discussion about changing the funding incentives in Medicaid to favor home care would open up a conversation about Medicaid reform in general that is a Pandora’s box that people don’t want to open. So the way that the system is structured, it has incentives that are problematic and fixing them would mean risking cuts to programs people rely on survive.

SC-F: So are there other ways that we can incentivize long-term care in the home that doesn’t involve the potential risk to Medicaid that you mentioned?

SL: Yeah, so there’s actually this law called well “Money Follows the Person,” colloquially. It expired in September of last year and then got a short renewal. And I think it’s going to be on the chopping block again fairly soon. And basically what it does is it gives grants to states to take the money that they would spend on someone in a nursing home and to use it for home care. And so the grant is used to help place people in affordable housing. It’s used to get all their services set up. And then a lot of the time, in the long run, it turns out to be less expensive to do it that way. But it’s got limited reach obviously because it doesn’t completely restructure how Medicaid works.

SC-F: Going beyond what’s happening in the U.S., I think similar outcomes have been seen in a bunch of European countries and in Canada, where I think it’s over 80 percent of people who’ve died of COVID have been those in long-term health care facilities and nursing homes. So why do you think this is such a widespread phenomenon?

SL: So President Trump likes to point at the low number of fatality per case in the United States. And it’s an interesting metric to look at because the only reason we have lower deaths is because we just spend a ton on health care. The United States has more machines. We have more ICU beds, we have more resources, whereas in European countries, The New York Times had this really interesting article about people basically being left to die. Hospitals would just refuse to treat anybody over 75 years, they wouldn’t admit people to the hospital.

But the other issue is that disabled people and seniors are seen as less valuable. We’re seen as burdens and useless eaters. And so we just drastically underfund all of our services for people who need them. We try to cut corners. As a career, care work is really devalued and that’s because seniors and people with disabilities are devalued. The people who take care of people that our society doesn’t care about get treated poorly too. It’s just a whole chain of devaluing human life.

SC-F: If you look at certain countries, if you look at a country like South Korea, there’s more of an ethos of the family and society and all that. But in a country like Germany, they also had much better results in their long-term care facilities and nursing homes. Why do you think that is? And what do you think they did differently?

SL: So basically both these countries you listed spend more on long-term care and that makes a difference. South Korea actually spent slightly more than the United States, which is interesting. Spain and Italy also spend slightly more. And to be clear spending more on long-term care doesn’t necessarily mean better outcomes. Canada spends almost twice as much as the U.S. on long-term care, but they had worse results because of the way that the services are structured and the delivery systems are not efficient. Germany has relatively high long-term care spending.

The other thing is that long-term care at home doesn’t necessarily mean with family. So “aging in place,” the whole point is that the government should be paying for long-term services and supports. There’s a huge amount of care work that women are expected to do for free. And a lot of it is really difficult, emotionally and physically, and it shouldn’t work that way. I don’t think that multigenerational homes are necessarily an issue because if you have someone who’s a senior or disabled living with their family and the family still doesn’t have the resources to deliver adequate care, that’s not better. So when I say home care what I mean is service delivery in the person’s home, which may not be the home of their children or their grandchildren, it’s their own home that they have control over or their apartment that they live in. People can choose to live with family if they want to. But really good long-term home care facilitates independence for as long as possible.

SC-F: Are there specific steps that could be taken to improve the current conditions of nursing homes in the U.S.?

SL: Yes, but it’s complicated. The Trump Administration, I think it was $2 billion that they just gave no strings attached to the nursing home industry recently. And a lot of that money has not gone to improving conditions because when you give them a giant pile of money and no oversight, that’s what happens, right? So I do think that it’s important to actually follow through on expectations for things like infection control: How does a nursing home that has multiple citations for not adequately doing infection control continue to operate? What are the consequences if they don’t meet CMS requirements? Why are these facilities still doing what they do and not fixing things? I do think that there needs to be more enforcement, but I do think that the primary thing we need to do is start to phase out nursing homes.

I don’t think it’s possible to do it overnight. When I talk about a world without nursing homes, it’ll probably take like 10 or 20 years to get there, because you can’t just close all of them and then have all these people who don’t have anywhere to go, right? You have to make sure that you have a process, because that’s what happened with the deinstitutionalization. You just closed the facility and then you don’t have follow up for people and they end up homeless. It’s not ideal either. You just end up with people in a different bad situation. I think reform is possible, but I think ultimately we do need to work on phasing them out.

SC-F: So going back to this idea [of abolishing nursing homes that you recently argued for in The Nation], more specifically, what are the barriers to moving on from nursing homes and toward home care and how would you overcome these?

SL: So there’s the structure of Medicaid, which I already talked about, where there’s institutional bias that incentivizes nursing home care. And the reason that Medicaid matters so much here is because it pays for such a huge chunk of long-term care. Private insurance and out-of-pocket payments are much smaller pieces of the pie. And so, as Medicaid goes, so goes the rest of the industry. Really it’s the government that shapes the model here because they’re the primary payer. Also, I think that in the United States, at least, there’s sort of this cultural barrier where we see nursing homes as a necessary part of the life cycle. It’s completely ensconced in our culture that there is a special place where old people should go to die.

SC-F: Do you think having more disabled journalists in visible places in media would have changed how much focus we put on what was happening in long-term care facilities? And why do you think there was so little attention paid to it in the media considering it has been 40 percent of deaths in the U.S.?

SL: I do think that more diversity in media would make a really big difference. But I also think the issue is that culturally these are people that we’re sort of done with. And you see it pretty much across the political spectrum, for example in early coverage of the issue where you have Dr. Deborah Birx talking about how COVID-19 spares the young and that we should be grateful for that.

Probably one of my main goals career wise is to change how people talk about disability and how people view disability because there are these fundamental assumptions and they’re shaped by media and they’re shaped by the way that we talk about disability. I would like to make everything a little less segregated because the other aspect is there’s sort of this out of sight, out of mind issue where if you don’t have to look at someone it’s a lot easier to ignore them. By putting seniors or disabled people away in a special facility, you’re basically making them easier to ignore.

SC-F: So for those with disabilities who are not in long-term care facilities or nursing homes, have you looked at all at the impact of the loss of specific services for this population during the pandemic?

SL: So I’m actually working on a piece right now that touches on that issue. I’ve been interviewing families and disabled people about how the pandemic has caused them to lose some degree of independence because home care was severely disrupted and then didn’t get any funding in the Cares Act, didn’t get relief funding, didn’t get any of the $2 billion that President Trump spent on nursing homes. So a lot of home care just stopped happening. If you need help going to the bathroom or eating, you can’t just stop that. So a lot of people ended up with family for unpaid care work that they would not have needed previously because they just basically got cut off.

Some people have died from the disruptions, including some of my friends. One of my friends, her 40th birthday actually would have been a couple of weeks ago. She relied on home care and the services just got really disrupted and cut because of COVID-19 and she died. She didn’t die from COVID. She died from not getting the support that she needed. I don’t think anyone’s reported on it yet. And so it’s something I’m looking into.

SC-F: More generally, how did the HEALS Act, for example, fail to live up to the mandate of the Americans with Disabilities Act? And, lastly, how can we make sure that our next pandemic response does stand up for Americans with disabilities?

SL: So the Olmstead decision was a Supreme Court decision that interpreted the Americans with Disabilities Act as establishing a right for people to live in the community, basically. The COVID relief that has happened so far hasn’t reflected that. There hasn’t been even remotely adequate funding and sometimes no funding at all for home care services and for day services and just a lot of the things that disabled people and seniors need to stay at home and to live. Part of it has to do with the fact that it’s not a hot button, cultural, political issue. You don’t really have either political party really going to bat for people who are this marginalized, which is really frustrating.

SC-F: Do you see any sort of hope on the horizon, any movement, any push that you’re hoping could change things?

SL: Yeah. Firstly, a lot of disability advocates that I know are basically not sleeping right now; they’re just on the Hill all the time trying to get politicians to understand that they need to fund home care services, but a lot of it’s been going on for years. One of the primary issues with home care is that direct support professionals who work in the home are paid really poorly so the turnover rate is just enormous. Two out of three people quit within a couple of years. So I want more people to talk about this and maybe that’ll make politicians listen. I have to be a little bit optimistic otherwise I wouldn’t bother writing about it. We just don’t have the political will. And so I think that we can get there, but we’re just not there yet.