Several front-line state workers at the Glenwood Resource Center, a state-run institution in Glenwood, Iowa, that cares for severely disabled patients, have raised concerns about the quality of care there after a slew of patient deaths earlier this year, an in-depth report by Des Moines Register Tony Leys revealed.

Fourteen Glenwood residents had died at Glenwood between June of 2018 and April of 2019 when the article was published, which staff members say far exceeds normal death rates at the facility.

Staff members at the facility got in touch with Leys, who covers healthcare for The Register, “only after complaints raised internally had no effect,” Leys wrote. Current and former staff members expressed concern to Leys that the quality of care at Glenwood had diminished following administrative changes and the unexplained firing of a longtime doctor at the institution.

Using Iowa’s Open Records Law, Leys was able to read the resignation letter of a physician who resigned from Glenwood and talk with a former Glenwood pharmacist who left that position because of conditions at the facility.

The Iowa Department of Human Services still denies that this cluster of deaths stems from inadequate care.

In IowaWatch interview, Leys explains how he became involved in this story, his attempts to access public records, his surprise at the lack of autopsies ordered for deceased Glenwood patients, what it felt like to tell family members of deceased patients about the accusations against Glenwood, and why this story and stories like it show that journalism is important even though the economic future of the field currently is uncertain.

KELLY PAGE: First, I just wanted to know how you found this story.

TONY LEYS: Sure. So, I have written about the DHS-run institutions for years. And this is one of six institutions that the Department of Human Services runs. And last year, last fall, I started getting emails from an email account that was apparently, like, somebody made up just for this purpose, that was telling me there are issues going on with the Glenwood Resource Center, and I should check them out. But they were pretty vague. And I looked at the reports that were publicly available, and there wasn’t much to see at that point, and so I emailed back and forth with this person, not knowing who they were, and asked for more specifics. And that went on for several weeks. And it got more and more specific. And I finally said, listen, I need to know who I’m talking to here, and can we meet, and the person said sure, and said we’ll meet you on such and such a date in Glenwood. And so then I drove over to Glenwood not knowing who this was, or if there was a story there or not. And it’s two and a half hours from here. But sometimes you have to do that. Take a chance, when you don’t know if there’s a story there or not.

PAGE: Do stories like this often come to you where there’s like a big thing to investigate?

LEYS: Sometimes, I mean, it’s from working a beat, like if they know you’ve written about this kind of subject before, people will approach you. You know, it just comes from working a beat.

PAGE: Yeah. And where did you go from there?

LEYS: So once I went there, there were several former and current employees of the institution who were waiting to meet me. … None of them were willing to be identified publicly but they had a lot of information about the care there — and that there’d been this, there was starting to be this spike in deaths after a bunch of the medical staff had either been fired or left. And so I started– then they gave me information about what to ask for in open records requests, which, you need to be able to target an open records request to something specific. Otherwise, it’ll take forever, and it’ll cost you a fortune. And it almost gives officials an excuse to drag their feet if you make an overly broad request. But if you know specifically what to ask for, it goes a lot better. So that night that I went back and forth to get the open records I needed with memos and reports and emails about very specific things. … But then I said to this group of people who had very understandable reasons for not wanting to be public that I needed somebody to be on the record, because I’m not going to, if you write a story like that, and base it all on anonymous sources, it has no resonance with readers, it doesn’t have really any credibility, compared to if you have somebody who’s willing to stick their neck out who has credibility. To speak, it has a lot more resonance. So they, a couple of them decided, yes, they would be willing to step forward, people who no longer work there, at that point, were willing to step forward. And so that made the story then, both the records, and having people on the record who had recently been managers at the institution gave it all kinds of credibility.

Kelly Page/IowaWatch

PAGE: How did you convince people to go on the record?

LEYS: I told them I needed somebody to. And I explained why, that I wasn’t just being, you know, stubborn about it, that the story would that if they wanted to make an impact, which, which they did, they needed to help me produce a story that was going to have resonance. And if I did it all on anonymous sources, it wouldn’t have much impact at all.

PAGE: Okay. And what types of issues did you run into? Or like, first of all, what were the documents that you requested?

LEYS: Several things. Any reports about– I had been told that they always did a review of every death. So any reports about that. Quality indicator reports, internal quality indicator reports. And then emails or memos about specific things, including, there was a doctor who had quit, who told– who I had called and said he didn’t want to talk to me at all, which was totally his call. But he– so I didn’t badger him after that. But he had told– three different people told me that he had told them he wrote a letter to the director of the Department of Human Services, saying what the problems were when he quit. And so when I did an open records request, I included I’d like any correspondence between this main doctor, and the Department of Human Services Director. And when the Department of Human Services first responded to me, they said there were no documents responding to that request. And so then I called the doctor back. And I said, I know you said you didn’t want to talk to me, I just wanted to say that these three people told me you told them you wrote a letter to the director about what was going on. And the department says they couldn’t find it. And he was really frustrated by that. And so he called the department. And next thing you know, the department got back to me and said, Oh, we found a document responding to your request. And so I got the letter, which was very damning and said, among other quotes, in the letter, he told the director, and this was a year before, a year, before the story began, he told the director that the medical staff had been gutted, was the word he used, and that it was putting the lives of the most vulnerable people in the state in jeopardy. And so it was really powerful to have that letter.

PAGE: Were there any records that you wanted while you were writing the story that you couldn’t access?

LEYS: Sure, lots of them, and including, I got page after page of these mortality reviews, and they were all redacted. There was virtually no, there was no, you know, usable information. Which is apparently allowed under, I mean, they’re confidential. I thought there, there might be a little information released, but they said there was nothing that could be released on it. I also was hoping there’d be autopsy reports. But there, I got the death certificates, which are public records, and you have to go to the recorder’s office in each county, and there were three different counties, … the county where the person died. So most of these people were taken to out-of-county hospitals, there’s no hospital in that county. And so most of them were taken to either to Council Bluffs or Omaha hospitals. So to get their death certificates, I had to go to the recorder’s office in those counties. So I got the death certificates, which have a little information about what the cause of death was, but there’s no autopsy. In any of these cases, no autopsy was requested, which in a couple of cases was really surprising, including in one, the cause of death listed by the doctor at the hospital who pronounced death, said foreign body airway obstruction was the cause of death. And what the former employees told me was this person had choked on food. And the death was– the manner of death was checked as natural, as opposed to accidental, or homicide. And how choking on food can be determined to be a natural death is beyond me, as opposed to accidental. And if it, if it had been checked accidental, there would have been an automatic notification to the County Medical Examiner, who would have decided whether or not to intervene and do an autopsy to find out what was going on. Because it was checked natural that notification was never made and no autopsies were performed. So I was surprised that there were, and almost every single case, except for the last one, there were no autopsies done.

PAGE: Okay, and why do you think that is?

LEYS: Autopsies, there’s a cost to them. And sometimes, I think in a lot of these cases, quite a few of these people were somewhat older, 50s and 60s, not elderly, most of them, but I’m in my 50s, I don’t think 50s and 60s is elderly, but in that they’ve been in the institution for many years in very fragile health. And I think the families didn’t necessarily need, see a need to do an autopsy when they finally died. And the institution’s leaders don’t think there’s a problem with the data. They still don’t, or at least that’s what they’re saying. So they didn’t– they could have asked for one, but they didn’t. They left it up to the families. And the families didn’t ask for one, so no one did one. If the– the County Medical Examiner could have asked for it. But there was nobody flagging the County Medical Examiner’s that there had been a spike in deaths or that a couple of these, there was one other one where this gentleman had– the frontline staff, 17 of them signed a letter afterward about their concerns about this one death, which is extraordinary– 17 frontline workers signed this letter. And they said that, among other things, that this gentleman was nonverbal, always had been, but that he seemed to be in pain, and that there was blood in his urine, and that the frontline staff tried to get him medical attention and were unable to get him the attention they thought he deserved. From what they saw, what they observed from this gentleman that they knew, they’d known for years, that he was suffering. When you look at the death certificate, it lists as a cause of death sepsis, which is a blood infection that stemmed from a UTI — urinary tract infection. Well, wow. That sure fits with what they, the frontline workers, said that they saw and reported and couldn’t get him medical attention. To me, that was one of the most surprising ones and his family was not notified, had no idea that there were these concerns among the staff about what had happened. So I talked to his brother, who was his guardian, who said, the first time I talked to him, said, you know, they took wonderful care of him for all those years, and we had no qualms about the quality of care. And it was only after we had that. And so he didn’t ask for an autopsy. And it was only after we had this discussion that the workers clued me in that that letter that I’d obtained under open records, because somebody told me to ask for it, that that grievance letter was about this man’s brother. Like it, the name had been redacted by the time I got it. So I didn’t know when I first talked to him, that that’s who it was. But then when I showed him I felt like we — he should know, right? So … I showed him the letter and I said, you know, you can comment, not comment for the story, that’s now why I’m showing you this. I thought you should know. And he was super upset. And a staff member told me that they were specifically instructed not to talk to the family about what happened. So yeah, there was no autopsy. But I think that might have been different if family had been clued in that there were these concerns.

PAGE: What did it feel like to kind of like, be in that position of letting someone know that their brother might, like his death could have been avoided maybe, or like that there were concerns about his death that like you’re, as a reporter, you’re the person who’s like kind of becoming invested in this in that way. Like, just how did that feel for you?

LEYS: It’s about the hardest thing you can do as a reporter. It caused a lot of pain to families, and I was causing the pain with the families. And it was very, very difficult to have those conversations with them. I felt an obligation– I called all the ones I could reach, which was most of them. And I felt there was at least an obligation for them to not find out about this when it was on the front page of the Des Moines Register. And that’s what I told them. That’s the main reason I’m calling you. And, you know, if you want to talk about it, fine. If you don’t I totally understand. And I also said that the staff is not saying that in every one of these cases, these deaths could have been avoided, because that’s not what they’re saying at all. These, you know, these folks were all in very fragile health. And for a lot of them, you wouldn’t, you wouldn’t be surprised if any of them passed away in any given week, you know, they’re just very fragile people. It’s, it’s the way it is. So I made that clear too, that the staff was not saying necessarily that each family’s loved one could have been, could have been saved, because they’re, the staff doesn’t believe that.

PAGE: And I’m also wondering, because there’s two like very, like, opposite perspectives on this. There’s the people who are like, okay, like a lot of these people in this facility were old anyway, like, they were probably going to die. And it’s just coincidental that there was kind of like, a cluster of deaths, and then there’s the people who are like, no, care is declining. …Did you investigate with, like, a head-space that, like, both of those possibilities might be true?

Lauren Mills/IowaWatch

LEYS: Oh, for sure.

PAGE: Yeah?

LEYS: Death clusters do happen. And anytime you have relatively small statistics, there can be a cluster of anything, right. Car crashes, thunderstorms, I mean, anything. So yeah, I absolutely kept that in mind. In this case, the cluster happened after the staff sent dire warnings, that care was declining at this facility, then all of a sudden you have this spike in death. It also included a few deaths that the staff could point to that were questionable. That looks like they could, that, that poor care or untimely care could have contributed to this death. If if had just been that there were a spate of deaths, if that’s all there was there would be no story. It’s the two things together. That made it a story. Yeah.

PAGE: Has anything changed, like as a result of this story? Are people still kind of like not looking into it in an official capacity?

LEYS: Not that has been made public. Yet. That may change. I don’t know for sure. But not that has been made public.

PAGE: What do you feel is the importance of like writing and reporting stories like this?

LEYS: Especially since this is a institution owned by the people of the state of Iowa, they should know what’s being done in their name. I mean, it would be a story, even if it was a private institution, but it’s all the more important that this is run by the state. And that the state’s own employees, a bunch of them have been warning their managers that the care is not as good as it should be. And they finally came to the newspaper, because they felt like they weren’t getting any response from their managers. That’s, so that’s really important for the people of Iowa to know that the people who run this facility ultimately answer to the people of Iowa.

PAGE: Were there any other like, major difficulties that you ran into writing this story?

LEYS: I mean, there’s always patient privacy issues, which, I certainly respect the need to have patient privacy. I don’t want my doctor talking about me without my permission. I think that’s like, that’s totally legit. So it’s working with families and guardians who are willing to talk to try to– I want, when I write about folks like this, I try to make them as three dimensional as possible. These were real people with real life stories. So I wanted to include some of them specifically. We did not name the ones where we didn’t have the family’s approval. We could have, we legally could have. I have the death certificates. I know the names. But we intentionally did not name the ones that we didn’t have the families’ approval.

PAGE: Why did you make that decision if it wasn’t legally required?

LEYS: It just didn’t feel right to drag the families into it like that, especially because in many of these deaths, you can’t say for sure that the lack of care lead to that death. So what’s the point, right? But I wanted to have some, and another thing that I very consciously don’t do when I write about folks with disabilities is write about– I try not to write about them in a patronizing way. And one thing that really bothers me that a lot of people, including reporters do, when they’re talking about people with serious disabilities, is they refer to them by their first name on second reference. Oh, Jimmy did this. Jimmy did that. You know, he, he’s not Jimmy. He’s Mr. Smith. And he deserves the same respect that he would, I mean, that he would deserve if he were not disabled. Reporters also do that with, and not just reporters, but people talking about elderly people often do the same thing. Oh, we’ll refer to her as Donna. It’s like, No, you won’t, it’s, it’s not respectful. So I was able to talk about a couple of these folks in three dimensions. And then there was a follow-up story about a specific man who then died right after the main story ran and his guardian happened to be one of the main sources for my initial story, was a retired administrator at the facility, she was his legal guardian. So I had a lot more — I was able to write a lot more detail about his life and make him a real person, which I think is really important for people. Just because it’s the right thing to do, but also for the stories to have any resonance that this is a real person. And you know, it’s just, it’s not just some faceless resident, locked away in a facility.

PAGE: How do you go about like crafting, like, a three-dimensional person when you’re writing … at what point do you feel satisfied? Or, like, how do you look back at what you’ve written and … think critically about whether you’ve been, like, fair to people?

LEYS: It’s, I mean, you don’t need to go on and on about it, but it what, you know, what was he like, what, what did he like to do? He, okay, he was nonverbal? How did he communicate? You know, and how did he get to wind up living in this institution? Tell me about that. What was his life like in the institution? You know, he’s not just somebody who died, tell me something about him. As a person. You don’t, you don’t need to go on and on about that, but just some detail about who this person was. And then in that case, we had a photo of him, makes him someone that people can relate to, as opposed to just a resident of this institution.

PAGE: Did you ever feel while you were writing this, because you’re, like, exposing all these things that are potentially very wrong, did you ever feel like powerless, like what am I going to do to change it? Or was it more like you are doing something to change it by writing about it?

LEYS: I play a role, I don’t play the only role, you know, I would hope that people would demand that this be looked into. And it may not happen yet. But I’m doing what I can. So, and it, it’s the kind of story, the kind of story that I feel most invested in is the one that I know, if I don’t write this story, nobody’s going to do it. Right. As opposed to, I’m competing with six other reporters to do the same story, which I’ve been in that situation too. But in this case, it feels more important that I know for sure, if I don’t do this story, nobody’s going to do it.

PAGE: And that’s because they reached out to you?

LEYS: And because there’s fewer reporters working in this space, especially now. It feels — yeah, it feels more important to me. I also work on other things, sometimes a bunch of different reporters are chasing the same story, which is legit, that’s a legit thing to do, too. But this kind of story feels more important to me.

PAGE: What did you mean by that, “especially now”?

LEYS: Oh, whether it’s just been, there’s a lot fewer reporters working than used to be. That’s just a fact. Not just here, but everywhere in the country.

PAGE: Because of, like, less money in newspapers?

LEYS: Sure.

PAGE: Yeah. How — are you nervous about the future of journalism because of stuff like that going on?

LEYS: Of course I am. But I, God help me, I love it. So you know, I’ll, I’ll keep doing it as long as I can. I love this job. I’ve been doing it for 31 years now. And it’s just such a privilege to have people put trust in you to do this. And after the story ran, I got a text message from one of the people that I’d met with, and all it said was thanks for listening. And I mean, that means the world, right?

PAGE: Yeah, I’m trying to be a journalist. And everyone’s like, oh, why would you go into that industry right now? But I know that the world’s always going to need journalists —

LEYS: Yeah.

PAGE: — like, regardless of whether journalists are making money, that kind of, like, pushes me ahead.

LEYS: It’s such a privilege. It’s, it just is, and so yeah, it’s tough and, and I could lose this job. And I would have, I would, you know, I’d have to go find something else to do and I could. I wouldn’t starve to death, I’ve had a bunch of friends lose journalism jobs, and, and none of them have starved to death. And so I just, I’m going to keep doing it as long as they let me keep doing it. And I would encourage other people to do it, just, just know the reality that it might not last forever. But, you know, it, it also does prepare you for doing a lot of things, to be able to take a lot of information, organize it quickly and turn it into a readable form that gets the point across clearly and concisely. If you can do that, well, that’ll help you in almost any profession you wind up doing.

PAGE: Are you scared about the stories that aren’t being written? Because there aren’t as many journalists as there used to be?

LEYS: Oh, for sure. In going forward, you know, we are imperfect and, and people can criticize us till the cows come home. And they’re often right with their criticisms about things we should do better. But what happens if we aren’t here? What happens if there are no reporters at the legislature? What happens if there are no reporters willing to write about problems at the, at the state facilities or in prisons? Or in schools? Or, you know, it — what if there’s no one to ever write about it? Or to look over the shoulder so that public officials are doing things in the name of the public? What happens then? I think we need to think about that. And, you know, already, we have a very good team up at the statehouse. And I’m really proud of them. I’ve been around this state for 30 years, I can tell you, there’s a lot fewer reporters up at the statehouse than there used to be. There’s a lot fewer reporters all over the state and all over this country checking up on what the city councils are doing and county boards and, and hospital boards and all kinds of things. And if there’s no one doing that, how is anybody really going to know what’s happening?

PAGE: Yeah. What is The Register doing to kind of survive right now? Are they doing anything differently?

LEYS: We, I mean, the future of the business is probably going to be online. And we’re, you know, we’re trying to serve people as best we can, while also trying to serve folks who still want to get the newspaper. But in the long term, our industry will have to find a way to get more people to get back in the habit of being willing to pay something for their news, which, not very long ago, almost everybody paid something for their newspaper. I mean, that isn’t that long ago, and they’ve been trained to think that everything on the internet should be free. And that is not a model that can work forever, like somebody has to pay for this cause it’s not free. So, you know, we– there’s going to have to come a time in this country where people realize that they have to pay something for it. Not necessarily a lot, but something. So hopefully that’ll come, it’s starting to come.

PAGE: Yeah. At what point did you make the decision to become a reporter? And … how has journalism changed since then?

LEYS: So, I was mostly an editor here for the first 12 years. I worked here as a copy editor, and then an assignment editor. And it was really interesting. But I wanted to get back out in the field. And at least for a while, I thought at the time. And I just that that was 20 years ago now, and– 19 years ago– and it’s just so interesting. Like my job is to go find out interesting things and find interesting people with good, with, you know, interesting, new, surprising stories to tell. And if I’m ever bored in my job, well, that’s on me, right? That’s my fault. So it’s just a great job. And as far as what’s changed, I mean, the core of it has the core of what’s important. And I mean, you’re writing for the internet, you have internet resources now to look things up and to find people, everyone has a cell phone, which in some ways makes it easier to get ahold of people. Cell phones weren’t around, when I started this, they were virtually not around. People didn’t have emails when I started this. So I know that makes me sound like I’m ancient. But, so that has, in some ways, made it easier to find people. And for them to find you. it’s much easier for people to find me, which is great, most of the good stories come from people finding me…

PAGE: I wanna ask, is there ever a period of time where you’re not sure what you’re gonna write about next —

LEYS: No.

PAGE: Or just, stories keep coming?

LEYS: No, I’m overwhelmed, which is, it’s much more stressful to not know what to do next, like to have no good ideas, which that almost never happens to me, I always have way too many possible stories than I could possibly ever get to. And it’s really stressful sometimes to tell people, they, they contacted me, they tell me their family’s, you know, story about what’s going on with them. And they, they’re hoping we’ll write about it. And I fairly frequently have to tell people, we’re just not going to get to that one. I try to be honest with them. I try not to string them along, you know, but that’s really hard sometimes to tell people that, you know, we have to pick stories that have a bigger point than just, here’s a family that has something tragic or rough going on with them. But is there you know, at some point, if you just do those stories, it becomes voyeurism. But it’s hard to tell people that sometimes. Often. I have to do that often.

PAGE: How do you differentiate between, like,when there’s like a good story somewhere when sources have something they want to tell you?

LEYS: That’s hard, that’s hard to explain. … I did decide a long time ago, that I was not going to write any more stories just because they’re sad. Like I said, at some point that becomes voyeurism. I write sad stories. This was a sad story. But there has to be a bigger point to it. And, you know, that’s kind of a broad thing. I try not to be too narrow in what’s a story and what’s not. But there has to be a reason to do it. Beyond just that this is something that happened to somebody.

PAGE: With the story with the care facility, what are you like most proud of from the whole process?

LEYS: That I gave a voice to people with really serious concerns that needed to be heard by the public, and that they didn’t have any other outlet to do it.