American Madness: The Broken Mental Health System

[Jaunty Guitar Music]

Mike: Welcome, everybody. This is Avoiding the Addiction Affliction. A series brought to you by Westwords Consulting and the Kenosha County Substance Abuse Coalition. As always, I'm Mike McGowan.

Mike: You know, if your car is broke, you fix it. If you don't fix it, you can't really go anywhere. Well, you know what, the same applies to our mental health system in our country today.

Mike: And our guest today, Dr. Alice Feller, has written a powerful book, American Madness, Fighting for Patients in a Broken Mental Health System. Dr. Feller is a board certified clinical psychiatrist, mental health advocate and author whose life work was shaped in part, and we'll talk about it, from growing up with a father with a serious mental illness.

Mike: She has worked in private practice, hospital emergency rooms, psychiatric wards, chemical dependency programs and public clinics. Her writing, focused on mental health, addiction, and homelessness, has appeared in numerous publications as well as the opinion pages of the San Francisco Chronicle and New York Times.

Mike: She sits on the City of Berkeley Homeless Panel of Experts. Welcome Alice.

Alice: Thank you.

Mike: Well, I want to get into the nuts and bolts of your book in a little while, but I always like to start with the personal, right? So before we get into your work, you talk about growing up in a house where mental illness was prevalent.

Mike: It was your dad, right?

Alice: Yeah. It kind of affects the whole family and the whole family sort of bends to accommodate the situation. And so I wouldn't say that it's just him. I would say that it was the family.

Mike: Yeah, I think if one person has it, we all have, it's like the flu, right?

Mike: You all end up getting versions of it at some point. Well, in high school, you thought it was schizophrenia, right?

Alice: I wondered yeah, and we had an opportunity to write a term paper on whatever we wanted. So, I chose schizophrenia, and as I wrote the paper, I realized that he didn't have schizophrenia. But I thought if he did, he could be treated, and that would be wonderful.

Mike: As a high school student, you were already doing the work. Well, your description of growing up with your dad will sound really familiar to those of us and I'm one of them who grew up in a house with a raging substance abuse disorder or any other mental illness. Walking on eggshells, secrets, hiding feelings, avoiding topics, just to keep the temporary peace.

Mike: How did that shape your work?

Alice: Well, obviously it you know, it was familiar and I thought it was a really important branch of medicine really. And also, I was the one, the sort of unspoken designate to take care of my father. I was the oldest girl, the oldest child. And it was my job to keep him company on the weekends and to go wake him up in the morning on weekends.

Alice: For some reason he didn't use an alarm, and so, but I had no agency in it. You know, it was just my unspoken job, and I never even thought of trying to get out of it until later. You know, in my work, I have agency. You know, I can go, you know, to the waiting room and say, you know, Mr. So and So, you know, like to, you know, let's, let's talk. I can steer the conversation. I can be cordial and set up a nice atmosphere. So people feel trusting and, you know more cordial.

Mike: Did you ever talk to your family about how that became your unspoken role?

Alice: No. Never.

Mike: (laugh) It was. Isn't that interesting?

Mike: I mean, it was mine too. We all look back and go, why did that become my job?

Alice: Yeah.

Mike: It did. Well, in your introduction in the book I'm going to read this as a quote. Today, the public is keenly aware that our mental health care system is broken. But despite large sums of money spent in good faith, it stays broken.

Mike: We see the evidence of this on the streets, where the people are suffering from obvious mental illness, and make it their home. It wasn't always this way. Now, it wasn't perfect, Alice. Why did we break what was working?

Alice: I don't know if people set out to break it, but there were several reasons. The main thing that happened was the IMD exclusion, which was a law passed by Congress along with the creation of Medi Cal, or Medicaid and that forbade the use of Medicaid dollars to pay for treatment in a psychiatric hospital, unless it was less than 16 beds, which is impossible to have.

Alice: So basically, it wouldn't pay, you know, you can't use Medicaid to pay for inpatient care, psychiatric care. Although it may be that you can use it. I'm not sure on this point. No one ever addresses it. But I think maybe if there's a psych ward. But an IMD is an Institute of Mental Disease and it's defined as a hospital that has more than 50 percent of its beds dedicated to treating mental illness.

Alice: And it also applies to substance abuse treatment.

Mike: Well, right. I mean, I used to run a hospital and in my state, in the southwestern corridor of our state quarter. At one point, 30 years ago, we probably had 30 stand alone inpatient facilities. I think there's two today. And that I think rings a bell all across the country, right?

Alice: Yeah. It's very hard to get into a psychiatric hospital. Very, very hard. And so we use the jails instead.

Mike: And the help available in the jails is?

Alice: Not so great.

Mike: A common theme is, that you say in your book, is while early intervention and correct medication can make a difference, the programs are rare and insurance blocks at the cost of meds.

Alice: Yup, that's right.

Mike: So how do you deal with that?

Alice: Well I'm on a campaign to change that and many of my fellow advocates are also on a campaign to do that. I mean, it's difficult. You know, early intervention in psychosis is a particular program. It's very concentrated, very intense. It involves, you know, psychotherapy, medication management, family work.

Alice: Families are very important and are involved from the beginning and voc rehab to get people back to work or back to school. These are young people who are, and it's, you know, It addresses people in the very first hopefully the very first months of their illness. Because the longer you wait, the worse the prognosis is.

Alice: But if you start early and do the right things, you can actually change the course of the illness and help people go back to their normal lives and, and just cope with this illness. It doesn't go away, but you can use the medication. You can use your helpers. You can talk to the doctors and tell them about whatever's going on and say we need to change or whatever.

Mike: How do we how early can we start and who does the triage early on?

Alice: Oh, that's such a good question. You could start really in the prodromal phase before people actually have a psychotic episode, but it's hard to identify that when it's happening. So that's rare. Usually people have had a psychotic episode, usually they've been hospitalized, at least sent to the emergency room anyway or put in jail.

Mike: We've talked to people here who end up having an episode and then they spend a huge amount of time in the system being misdiagnosed.

Alice: Exactly. Right. So we don't really train our mental health workers except for the medical workers like me. But for the non MD therapists and, you know, social workers there isn't any, rarely, I mean, rarely is there a curriculum that includes serious mental illness and there's no requirement, at least in California this is how it is, there's no requirement that people have any expertise, any hands on experience with people who suffer from those illnesses.

Alice: And from what I can find out, the questions on the licensing boards state look for state license. Are very few and far between or non existent, so there's no requirement. People don't know what they're seeing, you know.

Mike: You know, I do a lot of training, especially in substance abuse, and when I train social workers and especially those fresh out of school or grad school I don't mean for this to sound insulting, but it's a little scary.

Mike: What they don't know is actually scary given that their job.

Alice: Yeah, it is. That really needs to change. And it isn't their fault. They're just not being, not being taught.

Mike: Right. You only know what somebody is telling you, right? Well, some of our listeners, I think we'll be shocked when they hear you say that a primary diagnosis of substance abuse will exclude the patient from almost all funding.

Alice: You know, that was my experience. Recently I worked in outpatient clinics, they're actually called service centers in the East Bay, Oakland. Oakland and Berkeley, and it was my co workers who told me not to mention that or not to put that in. We didn't actually record the diagnosis ourselves.

Alice: People came to us already diagnosed, and that diagnosis was locked into the system, and it was almost always schizophrenia.

Mike: And because?

Alice: They couldn't actually have two diagnoses.

Mike: Why would the diagnosis almost always be schizophrenia? It couldn't have been.

Alice: (laugh) It wasn't. I mean, not really because insurance will pay the highest rate for schizophrenia.

Alice: It's the most serious mental illness.

Mike: Well, go into that then. Talk about what upcoding is.

Alice: Okay. So that's called upcoding. I was really shocked when I came back, I've been in private practice for years and years and then I went and started working in the public clinics. I was really shocked that this was happening, and I asked my boss, I said, You know, it's really strange that almost everybody's diagnosed with schizophrenia, and I know that's not true, you know, I've gotten to know them, and that's not right.

Alice: And he said, The caseworkers just do that, make that, caseworkers put that in on intake. Just go ahead and make your own diagnosis. And I could certainly make a different diagnosis if I found it, but I couldn't put it into the form. So the form is in the computer, electronic medical records, and it's permanent there.

Alice: You know, there's no way that we can change it. And that electronic medical record is used as the billing document sent straight to the insurance companies.

Mike: Well, and you talk about that in your book, that the EMD is one of the problems as opposed to having notes that people can read and diagnosis that can change, which is what you used to do when you first started doing this, right?

Alice: Right, right, right. We all used to. Yeah.

Mike: So there's a big difference then between public and private. When you switch from private to public, that's almost, it seemed like a different system.

Alice: Well, I mean, it's part of the same system and it has huge problems even in private practice. I mean, the fact is, and this is incredibly sad, most people in private practice in my field will not take insurance.

Alice: Not just not, they won't take Medi-Cal, but they won't take private insurance because the insurance companies have discovered that they don't have to pay. You know, they can advertise that they cover mental health but when it comes to it you send in your claims form and you never hear back. And there's nothing you can do.

Mike: You know, I'm discovering that also is that there's a lot of practitioners who are off the books, so to speak. They're not filing claims with insurance forms. They're not going into insurance. They're like private pay.

Alice: Yeah.

Mike: Well, that assumes you can pay.

Alice: Absolutely. It's a terrible, terrible system.

Alice: There's no way, you know, there's no transparency on the part of the insurance companies. Because they don't have to. And you can't go to, I mean with another thing, like a different kind of medical service or treatment. You can go to the insurance company, and file a bad faith claim.

Alice: We did that actually with one of the blues. We were covered with one of the blues. But for mental illness, nobody wants to go into court and explain that they have this illness. And we can't divulge that information. I mean, we divulge it to the insurance companies because they get a blanket all the, all the privacy rules don't apply to them.

Alice: It's, it's really bad.

Mike: And does that same refusal to pay go towards medication as well?

Alice: You know, I haven't heard of it. No.

Alice: And that goes through the pharmacies.

Mike: Well, there's an interesting dynamic there too.

Mike: Well, you talk in your book about a, a term pharmaceutical Frankenstein, right?

Alice: (chuckle) Yeah.

Mike: For those that haven't heard that term, describe that.

Alice: (laugh) Well, I invented it. It's not a particularly, you know, it's not uncommon.

Mike: I liked it.

Alice: (laugh) Yeah, I had a patient who was really, you know, transformed by the right medication. He got Haldol, which is kind of old fashioned and unusual, but for him it worked brilliantly. And he was just, you know, from night to day. And then he fell through the cracks. And he got sick again, and it turned out that he was off the Haldol, but it really helped him.

Alice: And he was on Seroquel, you know, 24 hour delayed release, which is very, very sedating, and it didn't help him, and he was desperate to get help. He was trying to get back into the hospital. He kept trying to get back. So anyway, you know, and this prescription was more than a year old, I could look back through RxNT, which is the computerized prescription program, and I could see that he was on it for a couple weeks maybe, a year earlier, and clearly it hadn't helped him.

Alice: But, you know, you have to go through every single prescription on the RxNT program and discontinue each of the drugs that they're no longer on. Otherwise, the pharmacy can call and say, you know, Mr. So and so has run out of his Seroquel, you know, quick. He's run out, you know, you must reorder it.

Alice: And often, you know, it's so harried, and there's so few hours that we have to work, the psychiatrists, that. We'll just, I mean, I try not to do this ever, but, you know, people will renew other people's prescriptions. You know, somebody must have looked back or didn't even look back. You know, you just take the word of this young woman and she's really worried and the patient's going to go without their meds.

Alice: And this is the med that they need. (sigh) So.

Mike: Well, and Haldol, as you said, is old school. I mean, it's been around for a long time and much cheaper.

Alice: Yes.

Mike: Than the Seroquil, so.

Alice: Yes, exactly.

Mike: There's money being made there.

Alice: Totally. Yeah. I forgot that part. Yes.

Mike: (laugh) There's other people that don't forget that part.

Mike: You know, you also mentioned something else. You alluded to it in there. There's a huge difference between your caseload if you're a private practitioner and what you're doing now in the public clinics, just in numbers.

Alice: Right. Yeah, I had a caseload. I'm not, to be clear, I'm not practicing now. I saw my last private patient more than a year ago.

Mike: But I think at one point in your book you talked about in your public clinic, you had over a hundred people that you were on your schedule.

Alice: Yes. Or some of them I never met, but they were on my roster, you know, they were on my caseload officially. So, right. We don't get a chance to see our patients nearly enough.

Alice: And that system you know, once a month for 20 minutes is considered perfectly okay. Or once every three months, or it's supposed to be once every three months, but that doesn't always happen. These are for severely ill people.

Mike: Yeah, and your job then becomes filling out paperwork.

Alice: Yeah, right.

Mike: I know many therapist friends who will be listening to this and shouting hallelujah at the line you use.

Mike: Imagine if a carpenter had to stop his work every 20 minutes and fill out pages of computer forms so the contractor could be paid. Is that not what it's like today?

Alice: That is. Yes. That's right. If you're in the system.

Mike: All of my friends who are therapists, their biggest complaint is not the patients.

Alice: Oh, no.

Mike: Not the work.

Mike: It is taking time out. The forms, the records, the duplicate and they're all looking you know, Alice, one of the things that I found lately is they're finding ways to use chat GBT, right? In computer in, in the EMD. So that they can save a little bit of time.

Alice: Right, right.

Mike: You know, many of your stories in your book about the unhoused that you work with. Their stories without end. You don't know the ending.

Alice: That's right.

Mike: That must be what the work is like.

Alice: Yeah, well, you know, we had a lot of people in our clinic caseload, I was in the full service program, who lived on the streets, and their caseworkers would go out to find them, you know, to see them for services or check in or whatever, and they couldn't find them.

Alice: So, and I would have patients on my schedule who were supposed to come in, but they couldn't be found, so they didn't come in. It's called a hospital without walls, but it's so far from being any kind of hospital. Without walls is true.

Mike: Well, and some of the vignettes, some of the patients had difficulty when services were provided for them.

Mike: If that makes sense, you tell a story about an individual who was given an apartment or a room. And just degraded from there because didn't really want to be there.

Alice: Right. Yeah. So that was a guy who was probably not mentally ill really at all. He was a veteran and a very congenial guy. And he told me these stories, his war stories from Vietnam.

Alice: He was a Vietnam vet. And then his caseworker found an apartment for him. And he had a dining room table and a kitchen and a bedroom and he just fell apart. And what happened was that he had these buddies on the street, and he would hang out with them. And then, you know, when he had his own place, you know, at the end of the day, he would go back home or, you know, at night when it's bedtime, he would go back home to his nice warm bed, and his friends just had to stay on the street, and it was awful for him.

Alice: Suddenly he didn't belong. But finally, you know, he'd go out and spend the days with them, even though he wasn't quite one of the crew anymore. But then one day they were, they would panhandle and they got into new territory and made a ruckus and the police were called. And, you know, all of a sudden he was one of the crew again, one of the comrades.

Alice: And he was back to his old self. You know, it's a huge change from living on the street, if you've been living on the street for a while. It's very hard.

Mike: Well, and that worker must have just done flip flops thinking that he or she did a great thing in finding them the room.

Alice: Yeah.

Mike: We talk about belongingness and we exclude them so often, but how do we include the families in some of this when some of the people who are suffering mental illness are so detached from their families?

Alice: That's a good question. You know, if they're so detached that they don't know where their families are or we don't hear from the families, it's, it's very hard to include them.

Alice: But often in the beginning, the families are right there, and often it's the families who make contact with services.

Mike: You know, I found that there was and I think it's really important to listen to them, right?

Alice: Oh, yeah. Very.

Mike: I don't know why we don't do that. And sometimes, I've seen practitioners, Alice, argue with the families about what they're actually seeing.

Mike: Their experience is valid.

Alice: Well, you know, I've never agreed with it, and I've always brought the families in as much as I could. Like the mother of the guy who was on Haldol.

Mike: Yeah.

Alice: You know, she would sit and she would talk to me. He would sit at the far end of the room, you know, and kind of huddle there, obviously, be afraid to talk.

Alice: It's really, really helpful to hear from the families. When people are really in a state of psychosis, you know, once they're no longer psychotic and just, you know, needing care, then you change your stance with the families and you listen to them. You can always listen to them, but you don't want to be talking to say the mother of a 25 year old.

Alice: Who is no longer psychotic, because then we sort of change over to our normal privacy rules. But you can always listen to the families. There's no rule against that. And I think we should always, no matter what.

Mike: You use words in your book like crazy and insane. I assume you pick those words on purpose.

Mike: To make a point.

Alice: Yeah, I mean, I certainly was never talking about a patient. I was talking about the system, like the upcoding.

Alice: Yeah, I mean, I was just speaking colloquially. You know, the way we say that's, it's crazy. You know, this or that.

Mike: Like, why would we do this?

Alice: Exactly.

Mike: Well, at the end of your book you make several recommendations about how to fix the system or at least begin. Where would you start? I get asked, this is the question I get asked all the time by people.

Mike: Well, where, if you were king of the world, where would you start?

Alice: So the first thing I would do would be to abolish the IMD exclusion so that we could once more pay for care of severe mental illness the way we pay for all other medical care. There's no other kind of illness that suffers this kind of discrimination.

Alice: You know, people are hospitalized for all kinds of things and they get incredibly expensive treatment often. And Medicaid pays, if you have Medicaid, Medicaid will pay. So I would change that. And then, you know, what would follow, I think, hopefully, would be the opportunity to rebuild the hospital system.

Alice: Not in its old fashioned, terrible form, but, you know, something like what we had when I was an intern in San Mateo, we had a small hospital, it was a small community hospital, people spent maybe a week or two weeks or maybe a couple days there and we could really help them. So that's what I would do there.

Alice: I would immediately start early intervention and psychosis programs throughout the country. Every catchment area would have one and we'd have enough for everybody. who was experiencing a first psychotic episode, and we would pay for them. People say it's too expensive, but right now, we're paying so much money for all the untreated mental illness that we have.

Alice: Prisons, police, you know, homeless services, disability. People are permanently disabled, and we don't count that. You know, if we counted that, you'd see that we would save a lot of money by treating people properly in the first place.

Mike: Well, and what we know is that this current generation of young people are reporting mental illness at a degree that we haven't seen before.

Alice: Yeah, that's true.

Mike: Alice, this has been terrific. I wanna be respectful of your time.

Mike: For those of you listening, the book is, I don't know how to describe it other than powerful. I enjoyed reading the vignettes and it left you feeling frustrated 'cause you don't know the end of them. But that's real, isn't it, Alice?

Alice: It is real, yes.

Mike: And I like your recommendations. And if you talk about the way the system is, you know what it reminded me of, Alice, is long ago I saw a repeat of a documentary that was on TV by a Edward R. Murrow, a journalist back in the 50s who talked about hunger in America that changed the war on poverty.

Mike: And I think sometimes you have to open people's eyes to be able to get their attention.

Alice: Definitely. Yes.

Mike: So that's what I'm talking about.

Mike: Alice, thank you so much for being with us today and for your lifetime of work.

Mike: For everybody listening, listen in next time if you're able until then stay safe and stay grateful.