Assisted Living Regulations Fall Short In Florida

Guests

Michael Sallah, investigations reporter and editor, Miami Herald
Kenny Malone, reporter, WLRN Miami Herald News

Florida was one of the first states to regulate assisted living facilities, establishing legislation to protect some of the state's most vulnerable citizens. But a collaborative investigation by the Miami Herald and WLRN raised questions about cases of abuse and deaths in Florida facilities.

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NEAL CONAN, host:

This is TALK OF THE NATION. I'm Neal Conan in Washington.

Patients denied food and water, denied medicine or given overdoses. Patients tied up, doped up, locked in dark closets, almost no one held accountable, even for dozens of deaths that are, to say the least, questionable.

A year-long investigation by the Miami Harold and member station WLRN discovered systematic abuse and neglect in Florida's assisted-living facilities over 2,800 homes established to provide shelter and to protect the elderly and those living with cognitive disabilities.

Florida long ago enacted a patients' bill of rights that was hailed as a national mode, but inspections, enforcement and standards all failed to protect patients' welfare, dignity and, in too many cases, their lives.

If you have a family member in an assisted-living facility, what did you do to find a place you could trust? Give us a call, 800-989-8255. Email us, talk@npr.org. You can also join the conversation on our website. That's at npr.org. Click on TALK OF THE NATION.

Later in the program, how al-Qaeda may adapt its tactics after the death of Osama bin Laden. John Arquilla on the coming swarm. But first, "Neglected to Death." That's the title of an investigative series by the Miami Harold and WLRN.

Joining us now from member station WLRN in Miami are Michael Sallah, the team leader for this series. Nice to have you with us.

Mr. MICHAEL SALLAH (Investigations Reporter and Editor, Miami Herald): Glad to be here, Neal.

CONAN: Michael Sallah is the investigative reporter and editor for the Miami Harold. And Kenny Malone, who's a reporter with member station WLRN Miami Herald News. Nice to have you with us, as well.

Mr. KENNY MALONE (Reporter, WLRN Miami Herald News): Great to be here.

CONAN: And Michael Sallah, let me ask you: In your newspaper series, you describe many of the deaths in this investigation as questionable deaths. At least in some of these cases, is homicide too strong a word?

Mr. SALLAH: There are those that would use that word. I think what we found was that there were people who clearly died at the hands of their caretakers. There were people who bound so tightly they got blood clots in their bodies. They died. They were restrained because they were wandering.

There was a gentleman who had wandered so often from his home, he was found one day, he had been ripped apart by alligators, eaten alive. We have a case of a man who essentially boiled in water, in a scalded bathtub. So it's close.

CONAN: It's close. Let me ask you, Kenny Malone. Tell us another story. Tell us about Aurora Navis(ph).

Mr. MALONE: Aurora Navis is a story that I focused on for the radio portion of this investigative series. She was a woman who, you know, when you talk to her children, the first thing that they tell you, especially given the circumstances of her death, was afraid of water her entire life.

And they'll recount to you how amazing that was given the fact that she flew -put them on a plane out of Cuba to get out of Fidel Castro's Cuba as part of what's now known as Operation Pedro Pan. Her husband came over by boat, and she was left in Cuba and finally got out, flew over the Straits of Florida, you know, probably not her choice to fly over the water, and they met in Chicago.

And the family went on vacation to Miami Beach. She stayed on the shores, kind of hovered over the kids in fear of the water. And when she retired to Florida, they put her into an assisted living facility. She developed Alzheimer's and needed to go to a facility.

So the kids were very careful about the water. The facility was on a lake, and her son Alfredo(ph), the first thing he checked was to make sure there was a gate by the water. There was an alarm on the day. There's a surveillance camera. There's no way that my mother could possibly wander out of this facility and drown.

But the night that Aurora Navis drowned, she did exactly that. She wandered passed an unplugged surveillance camera, out a door where the alarm didn't work, through an unlocked back gate and drowned in 18 inches of water. And truly it left the children questioning everything that they thought they knew.

CONAN: And Michael Sallah, that story about an Alzheimer's patient, the worst kind of problems are in those homes that were dealing with people with cognitive disabilities. Yet the kind of abuses and neglect and - well, I could go on, but this is systematic throughout all of these assisted living facilities that - well, this is a boom industry in Florida.

Mr. SALLAH: They grew exponentially, mostly because of the numbers of folks with mental illness and other issues, disabilities, who needed a place to go in Florida, has basically created ALFs as the repository of where you go, whether you have dementia or whether you go when you have mental illness.

And we have found at these facilities that the numbers of people being roped, tied, beaten, thrown in, we had one home that continually used an isolation chamber to put people, as well as people who were being doped with tranquilizers without doctors' orders.

It's rampant. It's widespread, and the state continually catches these homes doing it but lets them continue operating.

CONAN: And that's - as bad as these abuses are, as pervasive as they are, this - the focus of the series, it seems to me, is on a state, a group of state agencies, but a couple in particular, that seemingly decline to investigate very seriously.

Mr. SALLAH: I think that the focus of our series was really on the Agency for Health Care Administration. It's Florida's top regulator of assisted living facilities. And we have found that time and again they allowed the worst places to stay open.

They - just in the last couple years, they could have shut down about 70 of them. They shut down about seven. They continually find them breaking the law, allow them to stay in. They lower fines. It's - you know, at the end of the day, you have to hold these places accountable. We found that, by and large, that's not being done.

CONAN: And Kenny Malone, we're asking listeners not just in Florida but around the country if they have someone in an assisted living facility, how do you find a place you think you can trust. It's interesting, in your series, you talked with Lauderhill police officer Tom Marinda(ph) in a place called Cannon Point, and his mother is in one of the assisted living facilities in that area.

Mr. MALONE: Yeah, that's right. As Mike mentioned, in Florida, there have been a few investigations that have shown around the country, nursing homes are becoming places where people with - younger people with cognitive disabilities end up.

But in Florida, by and large, that has been the assisted living facility. We even have an explicit license, the Limited Mental Health license, that allows facilities to advertise that this is the service we provide.

About one in three facilities in the state has that, but this neighborhood that Tom Marinda polices is called Cannon Point. It's the densest cluster of these facilities in the entire state. All 10 have this license.

And he's a complicated character because, as you mentioned, his mother is in a facility. He understands the problems with mental health of assisted living facilities. But he also sees that, you know, this neck of the woods gets 14,000 - it's gotten 14,000 calls to the police in the last eight years, about one every four hours.

So this solution as a place to, you know, put people with cognitive disabilities has created real problems in that neighborhood.

CONAN: And interesting, Michael Sallah, Kenny was mentioning the licenses. To get such a license, the requirements are more demanding, in fact, if you want to be a barber.

Mr. SALLAH: Yeah, the credentials to being an ALF administrator in Florida have not really kept up with the kinds of people that are now being warehoused in a lot of these places. So to be an ALF administrator, you basically need a GED or a high school diploma and 26 hours of training.

And we have found that auctioneers, barbers and cosmetologists in Florida need more qualifications than an ALF administrator. And sadly, these people are in a position to make life-and-death decisions on residents.

They're going to give them their psychotropic drugs. They're going to dispense the kind of medications they need. They have to check as to whether these people are decompensating or whether they're going through various life changes and health changes. And so, quite frankly, these are the folks that make life-and-death decisions for these people, and there's not a lot of credentials required for that.

CONAN: So how do you find a place you can trust? What do you do? 800-989-8255. Email talk@npr.org. And let's get Lois(ph) on the line, Lois calling us from Del Ray in Florida.

LOIS (Caller): Hello?

CONAN: Hi, you're on the air, Lois.

LOIS: Yes hi. I'm calling because I want to make a very important point to the people in South Florida and probably other - across the country. But I only have experience in South Florida.

Very important to do a lot of research. Very important to visit the facilities. It's very important to talk to the medical group that's handling a family member's case. And my question is: What kind of regulations are being set into place, or has it not been set into place yet, for overseeing administration of these facilities?

CONAN: Have you read the Miami Harold series of listened on WLRN?

LOIS: I haven't read the entire series, only partial.

CONAN: OK. Well, Michael Sallah, let's get your response to that.

Mr. SALLAH: Well, you know, Florida has a model, laws in place to protect residents' rights and to also ensure that the state enforces the regulations. It's State Statute 429.

Unfortunately, the laws are only as strong as the people that are enforcing them, to hold homes accountable. And so at the end of the day, I think that it's not so much the laws.

They could boost credentials of administrators. They could probably get out to these homes more than one every two years. The inspections in Florida should be at least once a year according to a lot of experts that we've interviewed. They only do them here once every two years.

So there's things they could certainly increase, but I think that the kind of penalties and fines that are in place have been there, and they've been there really for a generation.

Neal, as you mentioned, Florida passed this legislation a generation ago. Claude Pepper, the former great champion to the elderly, came down from Washington to help inaugurate these new laws in Florida, passed these with great fanfare and expectation.

CONAN: And if the kind of work that Lois is suggesting - go visit, make sure you visit, talk to the medical staff, do your research - would that be adequate for a lot of these ALFs in Florida, these assisted living facilities?

Mr. SALLAH: Well, it certainly helps. I mean, if you talk to people who have advice about what do you do, how do you find the place, you know, a very simple piece of advice is visit at different times.

You know, if you're always going during the same time period, what's to say that you're not seeing the best of the best? Your visits need to be unexpected, and they need to be with the intention to see if this facility is doing well.

And, you know, there are a lot of documents that are available online. The Agency for Health Care Administration does post a lot of their investigations and a lot of their inspection results online. So you can check those online, as well.

CONAN: Lois, thanks very much for the call.

LOIS (Caller): Thank you.

CONAN: We're talking about assisted living facilities and the dozens of cases of abuse and death uncovered in a recent investigation. If you have a family member in an assisted living facility, what did you do to find a place you could trust? Tell us your story, 800-989-8255. Email us, talk@npr.org. Stay with us. I'm Neal Conan. It's the TALK OF THE NATION from NPR News.

(Soundbite of music)

CONAN: This is TALK OF THE NATION from NPR News. I'm Neal Conan.

We're talking about a year-long investigation of assisted living facilities in Florida. Michael Sallah and Kenny Malone helped report on systematic abuse and neglect, dozens of cases of preventable deaths, all with few, if any, consequences.

The investigation was a partnership between the Miami Herald and member station WLRN. You can find links to the full newspaper series, as well as to the radio series, at npr.org.

Michael Sallah is an investigations reporter and editor for the Miami Herald. He served as the team leader for the "Neglected to Death" series. Also with us, Kenny Malone, a reporter with WLRN Miami Herald News, who also worked on the story.

If you have a family member in an assisted living facility, what did you do to find a place you could trust? Give us a call, 800-989-8255. Email us, talk@npr.org.

Michael Sallah, we have to report, obviously you're looking in this case for abuses and for a lack of oversight. There must be facilities that are - are models in Florida.

Mr. SALLAH: One of these facilities we looked at, Neal, that actually - we looked at a place called, was called Rosalie Manor. It's in Pinellas County. It was a place that was, quite frankly, at one time a hellhole. It had a lot of death. It had a lot of fights, a lot drug-dealing.

And we found an owner who turned it around. He managed to get in there, roll up his sleeves and start carefully screening the people going in, cleaning the facility, really reaching out to them as an administrator should. And it became a model for - and quite frankly, while he has small issues and minor issues here and there, no place is perfect, he showed that you could turn a bad place around and what you could do.

He renamed it, repainted it, brought in new staff, and it became quite a place that the regulators now say is doing the right thing. So it's the conscientiousness of the owner. It all starts at the top, how are you going to run these places that, quite frankly, are now the signature homes of Florida.

There are more of these than there are nursing homes. This is where most people are going. They're living longer. So they've become very, very important entities here in the Sunshine State.

CONAN: And we'll more calls in just a second, but the lack of regulation yes, it can lead - and the lack of inspection and the lack of enforcement - those can lead to - and you describe instances of people who seem to regard themselves as petty gods almost, who ran these facilities. But is it possible that that also makes it open to experimentation, to trying new things that might be restricted if this industry were strictly regulated?

Mr. SALLAH: Well, I think that what happens is, when you let somebody go, as long as they're allowed to keep going, they're going to continue to take things to the limits. And that's why at a lot of these facilities where there are people with mental illness, they're now resorting to tying them up, they're resorting to putting them in isolation chambers, or they're looking at doping them up with these powerful tranquilizers without doctors' orders.

And that's what they - we found over 505 cases where the state found homes breaking the law by using what we know as illegal restraints.

One facility, I think, drew more than 1,200 police and emergency calls in just a five-year period, and this is a place with only 34 people, but that's the kind of - that's when you're not running a home right, the kind of liberties you take and the kind of consequences that take place.

CONAN: Let's get some more callers in on the conversation. Bob's with us, calling from Columbia in Alabama.

BOB (Caller): Yes, I had a father-in-law I needed to place for just two weeks while the house was being worked on. I first spoke to a nursing home administrator who recommended this facility. I then looked on the Internet, and they advertised themselves as a premiere facility for taking care of Alzheimer's and dementia patients.

I then went to the state department of health to see if they had any red marks. Everything looked OK. But I had someone that went in there every once in a while to make sure he was OK, and she called me like within three days, saying (unintelligible) sedated, he's non-communicative.

So I had to call back and say: I think you've over-sedating him with the Seroquil. So they stopped giving him the Seroquil. So he was, you know, ambulatory again.

And so then within two days she called me again and said they are not fixing(ph) his liquids. So I called back, and when I called back about fixing(ph) his liquids, they stopped giving him fluids during the day and only gave him (unintelligible) water with his meals. He developed explosive diarrhea and then from that he got a urinary tract infection.

So two weeks after we put him in there, we went to pick him up. Instead of taking him home, we had to take him to a hospital in an ambulance, where he died six days later.

CONAN: So that suggests that the kind of problems that they're talking about in this investigative series in Florida, this was in Alabama, this facility?

BOB: Yes.

CONAN: OK. I'm terribly sorry to hear of your loss, Bob.

BOB: We did call the state, and they did do an examination shortly after that. And they got one of the worst ratings you could possibly get next to being just closed down.

CONAN: All right, thank you very much for the phone call. There was one case that you cited, Michael Sallah, one of the few cases where you could get actual documentation, because a lawsuit was brought, and you wonder why more cases aren't taken to court for things like wrongful death, civil cases.

Mr. SALLAH: Well, I think part of the problem there, Neal, is that we sign arbitration agreements when you come into these facilities. So you subject yourself pretty much to an arbitrator's decision.

And also in Florida they did tort reform in 2001. So they capped the kinds of damages that you can get in these arbitrations, and most facilities only have to carry a $25,000 surety bond or insurance. That doesn't go very far, and you can deplete that in one year with one case, and then there's nothing left for the rest of that year.

So I think what you're finding is - we're certainly not advocates of any type of, where, you know, one could have a field day with lawsuits. But for a long time there, the lawyers were, you know, unfortunately, were the civil regulators in many ways, and they were ensuring that these homes could feel the consequences where they felt it most, in their pocketbook.

When that's not a part of the equation, I think that's certainly one of the reasons why there's a there's some of the problems that we found down here.

CONAN: Kenny Malone, let me ask you: When you try to hold people accountable, when you go to talk to them about these problems, administrators, and you talked to state regulators and the people who are in charge, I wonder, how did they respond?

Mr. MALONE: We did one confrontation interview in particular that was interesting, the case that we discussed earlier, of Aurora Navis. You know, three of us packed into a car and drove from facility to facility trying to find out where she was.

And you know, when we finally got a hold of her, I mean, it's just so tricky because there are so many layers to these things that when we asked her why, you know, why were there no locks on the doors, why were there no locks on the gates, and we - she says, well, the firefighters came and told me to take them off.

And, you know, I checked that later, and it's true. You can't lock people in the facility. But the Miami-Dad fire inspectors never said don't have locks on the doors. They said, you know, have specific locks, locks that are double-knobbed to help prevent Alzheimer's patients from wandering out.

It's easy to dodge questions this way and to say, well, this regulatory arm told me to do this. This one said this. This one said this. And I think, you know, from an administrative level, from the administrator of a facility, it's easy to sort of shift blame and send it somewhere else.

CONAN: And Michael Sallah, in your series, there are people who tried to prosecute some of these people, took their cases to district attorneys and various other agencies and then found records had vanished. You couldn't prove who had talked to who, who had said what about what, and stories changed.

Mr. SALLAH: Neal, that was rife with those cases. My colleagues, Carol Marvin Miller(ph) and Rob Barry(ph), found untold cases of people who were altering records, changing records, shredding records.

I guess the most frustrating part of that was that, you know, Florida has one of the toughest elder-abuse laws in the country. It was passed in the mid-'90s under the late Governor Lawton Chiles. And unfortunately, this law is not used.

And in many of the counties we found the prosecutors weren't even well-attuned or even familiar with the law. So of 70 cases that we found where there was rampant abuse and/or neglect in a death case, they only prosecuted two people. Both of them got probation, and one of them had the charges expunged from her record.

So even in the cases of where they altered records and they were caught, they could have filed criminal charges, but in one case, I remember interviewing the prosecutor, he said it was just a civil matter.

And all you had to do was research the law and you find that it's not. It's a criminal matter. They could have been held accountable, could have been charged criminally. So that's a frustrating part of this, too.

CONAN: Dave is on the line. Dave calling us from Greensboro, North Carolina.

DAVE (Caller): Hi, Neal. How are you?

CONAN: Very well. Thanks.

DAVE: I am a retired administrator, and actually, I retired early because I didn't want any more to do with the industry. The biggest, you have to - if you go back to the origin of all of these issues, particularly in the case where these big organizations are running many, many facilities, you'll find that it's - it all comes down to cash. It's all a matter of the profit motive.

And facilities hold people in the facilities much longer than they should be. Now, we're talking about assisted living, but there are various other levels of care that are available to people. And oftentimes, an administrator is mandated by regional people or people in higher positions within the organization to hold people in the building beyond what is - should be considered the acceptable scope for those people to be at the assisted-living level.

CONAN: Now, you're in North Carolina. Is that where you worked?

DAVE: I worked for a number of years in North Carolina. I worked for a number of years in Florida. I'm licensed in Massachusetts, Florida and North Carolina.

CONAN: And do the kind of abuses that The Miami Herald and Miami Herald-WLRN News that they've exposed, does that surprise you?

DAVE: Not at all. In fact, you know, given the level of staff that has to really care for these people, it's a wonder it's not worse. I mean, you have to remember that the administration of these organizations, for the most part, are pretty well-informed people, and they're pretty willing and able people.

But the caregivers, the people in the trenches are paid $8 an hour, work sometimes double shifts, are not particularly well-educated and are tasked with giving out medications, keeping people clean, keeping them hydrated, without really having the understanding.

Good administrators try to give those people the understanding, but then regional people or people higher up will oftentimes, you know, tell the administrator that he should be using his time for better purposes, and that really has mostly to do with marketing.

CONAN: All right. Dave, thanks very much for the call. Appreciate it.

DAVE: You're welcome.

CONAN: And it should be pointed out that the series in The Miami Herald and Miami Herald-WLRN is replete with stories of people who were on duty at night, one person fell asleep or took some of the painkillers that were supposed to be given to the patients and fell asleep or locked the door and simply ignored cries for help that were simply going on down the hall.

Here's an email from Ashley(ph) in Gainesville, Florida.

My parents researched an ALF by asking my paramedic husband what the facilities were liked when he responded to emergency calls. Where are the buzzers located in the rooms? How alert and responsive are the staff at 3 o'clock in the morning? What's the condition of the rooms and the demeanor of the staff when an emergency arises? They also reviewed their insurance ratings for local facilities and have an ALF facility specifically listed in their living wills.

That's some advice that might come in handy.

We're talking about assisted-living facilities in Florida and a series "Neglected to Death." You're listening to TALK OF THE NATION from NPR News.

And let's go next to Linda(ph). Linda with us from East St. Louis in Illinois.

LINDA (Caller): Oh, it's great to talk to you.

CONAN: Oh, thank you.

LINDA: Thank you for this show. My dad, my wonderful dad, who was a community leader, served on the Illinois Disabilities Commission maybe 30, 40 years before he was in an assisted-living facility. They put him on a walker right away; he was still in a wheelchair. The area where they put him in a memory unit was always very quiet. Nobody talked, apparently. They didn't mix his pills with applesauce. His pills were bitter to the taste. They do that in nursing homes.

He lost 16 pounds in the first month he was there. He gained back a couple. He told us he had to go to the bathroom. It took the staff 45 minutes to take him to the bathroom. After being there about a year and some months, he got a hip fracture. Nobody knew how it happened. There were no consequences that I know of.

Lying on his back in the hospital, he developed infections in both heels. One heel became deeply, viciously infected. It took two weeks for the foot doctor to see him. He passed away on heavy medication. I just - I don't know what to say. We have got a long way to go.

CONAN: Linda, we're so sorry. Thank you very much for sharing the story, though. Thank you.

LINDA: God help you. Thank us. Thank you all.

CONAN: We invited the Florida Agency for Health Care Administration to join us for this conversation. They declined but did give us this statement.

(Reading) The Agency for Health Care Administration is responsible for enforcing licensure regulations in assisted-living facilities and works in partnership with other health and human service agencies to carry out our respective roles. The agency's inspections of assisted-living facilities help determine a facility's current compliance with Florida law. We expect the licensed operators to follow the law and assure those in their care are protected. We take this responsibility very seriously. Through the following resources, we are helping Floridians make informed decisions.

And we have links to those resources on our website. You can find those at npr.org. Click on TALK OF THE NATION.

Michael Sallah, I have to ask you: What's been the response since this series appeared in the paper and on the radio?

Mr. SALLAH: Well, I think we've got an overwhelming response from the public, and certainly, these good folks who have called in that have been replete with many other stories down here of their experiences and their loved ones at the facilities.

The - and the governor has not responded. However, the leader - some of the leadership of the Florida Senate announced - led by State Senator Ronda Storms, and - a Republican, and State Senator Nan Rich, a Democrat, had launched an interim project which is an initiative to basically make improvements in the law.

So they've already pledged that they're going to look at raising the credentials of ALF administrators, increasing the inspections of the facilities, and they're looking at - perhaps even looking at heightening some of the penalties.

So there has been a positive response from the legislature, and I think they -those that we've interviewed have felt a responsibility from earlier generations of legislators who felt it upon themselves to pass these laws.

CONAN: Kenny Malone, let me just add briefly, given the current fiscal climate, not just in Florida but certainly in Florida where there are budget restrictions, is it likely that the resources for this sort of agencies are going to be increased?

Mr. MALONE: Well this is certainly, certainly a major question that's out there. I mean, we're happy to see that an investigation over the interim will be conducted, but it's very hard to tell. I mean, this is - inspections were scaled back in the first place because of budget constraints. So the question is: Is it a better budget climate? Probably not. So the idea to make inspections more frequent is a tall order. Hopefully, there's money to make that happened.

CONAN: Kenny Malone, a reporter for WLRN-Miami Herald News, he reported for "Neglected to Death," a yearlong collaborative investigation by WLRN and The Miami Herald on assisted-living facilities in Florida. Also with us is Michael Sallah, the investigations reporter and editor for The Miami Herald, the team leader for "Neglected to Death."

Thanks very much to you both.

Mr. MALONE: Thank you.

CONAN: Coming up, what we should expect next from al-Qaida. We'll talk about the coming swarm. Stay with us. I'm Neal Conan. It's the TALK OF THE NATION from NPR News.

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