NSSC: Voices of Change Part 1: Serious Mental Illness, Missed Care, and the Criminal Justice Gap
We bring together seven voices to talk honestly about serious mental illness and why families are pushed to wait for crisis before help is allowed. We challenge outdated laws, uneven state systems, and stigma while naming practical fixes that can make outpatient care real and measurable.
• mental health codes built for inpatient care in an outpatient world
• step-up assisted outpatient treatment and why earlier petitions matter
• accountability gaps when AOT lacks judge involvement
• voluntary programs colliding with anosognosia in schizophrenia
• stigma and discrimination treating brain disease differently than other medical emergencies
• early intervention standards shifting from “dangerousness” to “risk of harm”
• discharge planning and why follow-up community treatment changes outcomes
• Arizona and California as opposites on laws, funding, and hospital beds
• criminal justice and forensic systems filling the void left by civil care
• medication non-adherence, substance use, and the revolving door to rehospitalization
• recruiting and training psychiatrists and clinicians to handle the hardest cases
• families as full-time caregivers with little support and no consistent standard of care
• building statewide councils to align stakeholders and move legislation
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Welcome to Why Not Me? Embracing Autism and Mental Health Worldwide? Hosted by Tony Mantor, Broadcasting from the heart of Music City, USA, Nashville, Tennessee. Join us as our guests share their raw, powerful stories. Some will spark laughter, others will move you to tears. These real life journeys inspire, connect and remind you that you're never alone. We're igniting a global movement to empower everyone to make a lasting difference by fostering deep awareness on wavering acceptance, and profound understanding of autism and mental health. Tune in, be inspired, and join us in transforming the world one story at a time. Hi, I'm Tony Mantor. Welcome to Why Not Me? Embracing Autism and Mental Health Worldwide. Before we jump in, if you haven't already, I invite you to tap follow. It only takes a couple of seconds and it helps this show reach more families who need to hear these conversations. Thanks for being here today. We bring together a group of seven voices, each with their own experiences, perspectives, and stories. We will talk about something that affects far more people than we often realize, serious mental illness in the spirit of Mental Health Awareness Month. This is not just a discussion, it's an opportunity, an opportunity to listen, to understand, and to bring light to conversations that are too often left in the dark. Joining us today is Crystal Fox, David Hagar, Laura Crasian, Linda Mimes, Judge Milton Mack, Rachel Streithe, and Anne Cochrane. This topic matters. It touches families, friends, and entire communities. This is the first of a three part series that we'll focus on serious mental illness. Today. We are creating a space where honesty is welcome, where stories can be shared, and where understanding can begin or deepen for all of us listening. I'm grateful to everyone that's joined us today. Thank you for having us. It's my pleasure. I think one of the first things we need to discuss is some of the things that might need to be changed. Let's start off with you, Judge mac mean. I think I said for a long time that our mental health codes are how to sync with science, that they are in patient models in an outpatient world, meaning that the focus is on inpatient hospitalization. On ninety five percent of the care is provided outpatient we need to convert this system from an intatient model to an outpatient model, and we're slowly moving that way now. Michigan has made some strides or assisted our patient treatment as a standard order. Now, if you end up in winkin a probate court on a petition for hospitalization, you're also going to get at So problem is our standard or intervention permits you to file a petition or someone who's not sick enough for hospitalization, but they are second enough for our patient treatment. The problem is, in order to use it, I could hospitalize first because the system is still backwards. So we have legislation pending which has passed the House and Senate, which would allow for easier intervention early before someone is so sick hospitalized, and then that should be our goal. I believe that's a step up. AOT is what you're talking about, am I correcting that? I'm not sure about that. The way it would work with a family member could file a petition of the probate court saying my son as a mental illness he needs treatment on an our patient basis, and then we'd have someone testified on that, and that's the judge health that he required it he could order our patient freedment. Yeah, I mean that you've just defined something called step up AOT. So we have court ordered treatment in Arizona, and that's our version of AOT. But in our case you have to go into the hospital first. There's not an option to have outpatient initiated order for outpatient treatment, so that's called step up AOT, and I think that's exactly what you've described. We will permit a psychiatric nurse practitioner testify, or a position assistant with a psychiatric background could testify, or a psychologist not just a psychiatrist at the airing, so it'll be easier to prevent presents the testimony you need. And the court being a position to an order for AOT, if it was found to be required, may be sent to the CMH. May'd be bound to pair the treatment plan within thirty days and get it back to the probate cross. You're going to make sure they're actually doing their job, and we're often running. Yeah, in Arizona, at least in some of our counties, we have some problems with AOT. We don't exactly do it quite right. The court order treatment doesn't at least in Maricopa County doesn't involve the judge and it only requires like a report to be submitted to the judge, But it doesn't put anybody in front of the judge and it doesn't create any accountability for our clinics. And what you need is to judge involved from beginning to end when the petitions filed. So we measure now when we get someone who comes in or a pickup order to have their loved line transport to the hospital for evaluation, we measure how many petitions we get after that we're running around twenty five percent. So what happens to the other seventy five percent? We don't have the answer to that yet. But so where at the front end we make sure that the deferment process is followed. So what happens is if someone is hospitalized, there's a deferment conference with CMH and the individual and a lawyer. If they work on a treatment plan, that becomes the plan and there's a deferment. But what has happened historically is the hospital devestment invites to the table patients signs of deferral and it's to deferral to nowhere. So we're trying to tighten up the ship all the way through the end, and we're measuring things. For example, we measure how many people we put on an AOT order are getting treatment within thirty days, and we know that number, and we know what provider is hitting the target right now, the best provider seventy five percent or sun Song great but better than zero. One of the biggest challenges families and caregivers talk about is you finally get someone the help they need, You get them hospitalized, you get them stabilized, and then sometimes far too quickly, they're released. There are time limits, there are policies, there are system constraints, and before long they're right back out, often without the support that they truly need to stay well. So my question, how do we break that cycle? We get around that well. In California, our AOT program is completely voluntary. It's not the gold standard of care that Treatment Advocacy Center puts out and is promoting, which when done right, is wonderful. We have fifty eight counties in California. These programs are all voluntary, and guess what the sickest people that they are targeted towards. If you have schizophrenia, you have fifty seven to ninety eight percent chance of having anasygnosia, which renders the frontal law of your brain dysfunctioning, and you are unable to be aware that you are ill. So you're not going to ever volunteer for services. Why should you? You're not sick. So we have this running horrible dichotomy in our state. And then we have the disabilities rights people and ACLU fighting for people's rights to die with their rights on in the street. But you cannot exercise your freedom and your rights if you are trapped in your mind, not seeing the world rationally. You cannot. Then it's a form of imprisonment in your own brain. So I admire Michigan and Judge Mack because you guys are trying to do it the right way. We almost all of our programs here in this state are voluntary. I've been hearing this same challenge from people all across the country and even globally. Because of this podcast, I get to talk with families, caregibbers and professors everywhere. No matter where they are, there seems to be a common frustration with how systems like AOT are applied. One example, I was talking with one father whose son was in a clear mental health crisis, walking down the street with no clothes on, completely disconnected from reality. Thankfully, the officers that responded to it handled it with compassion, no handcuffs, They kept him calm, even played his favorite music on the way to the hospital. But when they got there, the hospital initially refused to admit him because he wasn't considered in immediate danger to himself or others. Oh my goodness, because he had a good first responder, everything did ultimately work out. They did help him. So how do we begin to shift this perception so that people in obvious crisis aren't turned away simply because they don't meet a strict immediate threshold. And what changes, whether in policy, training, or awareness, need to happen so getting help actually leads to meaningful care. That's because our culture doesn't look at these illnesses as treatable, no fault brain diseases. They're just like any other organ based disease in our body. Yet they are discriminated against. And most of that discrimination comes from old, ancient legislation that was drawn back like sixty years ago in our state, that did not recognize these conditions as medical because at that time they didn't have the scientific evidence we do now, there's no excuse. Yet they are still being block. Barriers to care are so high to get somebody into care, and it's just it's not right. And the only thing I can see that we can do is we can get doctors involved, because family advocates are not listened to a lot of the time, believe me. But doctors have an MD by their name and they are listened to. And that's one thing that I don't understand is why doctors have not come out and fought for their own patients to in this arena that you're talking about, Because I don't see anything really happening of consequence until we get it through our heads in our culture that these are treatable diseases that are being discriminated against. No other disease is discriminated against like this. In our society. We would never say, oh, you're having a stroke, you can't talk, the doctor will not treat you till we get a lawyer here. No, but if you have a brain attack, forget it. Well. The Michigan Metal Health Commission back in two thousand and four came the conclusion of metal unless as streatable recovery as possible provides you intervened early, and early intervention was the key and now whitty for crisis. So Michigan has rewritten the Metal Health Code as it relates to when you can hospitalize someone, it's no longer danger to selve for others. You won't find that in our What you'll find is risk of harm. That's the question. So for recent case in Michigan, this individual had a law history of mental illness. He'd be treated, be hospitalized to get out, wouldn't take his medicine. He comes into court and the doctor who is testifying on behalf of the county says, well, he is currently not at risk of harm. However, within three to six months we can expect he'll stop taking his medicine again, and then he'll be at risk of harm due to possible suicide, drug abuse, increased risk of dementia and other things. Court of Appeal said that works. So by intervening earlier, that helps. But then the second part is when the court inners in order for treatment. If you've been hospitalized for mental illness, you've got to even temporarily. That's pretty serious. Does anybody really believe you can be discharged the next day with nothing. I don't think so. So what we do in Michigan, the standard order is, if we come to court on a petition and you're in the hospital, we will enter a combined treatment order of one hundred and eighty days of assistant pacing treatment and up to sixty days of hospitalization to be used during that period of time. And just kind of evidence of why this works. I saw I studied recently regarding those persons who are found not gut through reasonable sanity, and they measured with the likelihood of them being arrested again over the next five years. For those people who were treated at the forensic center and discharged without community treatment, they were arrested forty four percent of the time. For those who were discharged on the supervision of a treatment plan, they were arrested eight percent. Yeah, I just want to say states are so very different in their criteria for involuntary treatment. So the problem that Linda just described, we don't really have it. In the Arizona. We have persistent and acutely disabled statutes, not just gravely disabled or danger to sell for others. And so for example, that description of someone walking out naked in the street as not being considered harmful. In Arizona, I'm legal guardian of a woman who ended up easily getting hospitalized for exactly that she was disrobing walking outside of her group home, and she pretty quickly was qualified for a partition for involuntary hospitalization. She actually was in an er for a while. They even had to use restraints to keep her from continuing that behavior walking out naked, and we were able to get her into a hospital under court ordered treatment and a safe discharge plan, which I was required to authorize the discharge plan as her guardian, and so I was able to make sure she got into safe placement once her treatment was right. And you know, it was a successful pathway towards compassionate if you will, involuntary or I like to say, life saving medical orders, and so we have good laws in Arizona. I actually think they're probably model for the country. Were able to get someone a court ordered evaluation and treatment if they have even just signs of psychosis and they're refusing treatment. The problem we have in Arizona is that we don't have enough hospital beds and we haven't funded the system at all. So the average we have the fewest state hospital beds per capita of any state in the country, and Maricopa County has almost none. So we don't have the ability to hospitalize people for more than about twenty two days. That is the average if you're lucky, if you get into an involuntary court ordered civil hospital. So we're releasing people on court ordered outpatient treatment, but they're not stable. They have nowhere to go. They're going home to families. Family parents are getting killed. There was a very you know, nationally visible case last Monday, two parents died after their son killed them because of poor treatment after discharging from a hospitpital. So we have to have a funded system. It's like the opposite of California. You guys have money, but you don't have laws. In Arizona, we have laws, but we don't have the money. And I'm fighting legislation right now, and I'm having to beg for five million dollars or a program, and I'm probably not going to get it because our state budgets. Our state legislature doesn't like funding things. So we've been talking about funding and clearly resources matter. They shape what services are available, how long someone can stay, and what kind of follow up care even exists. Now, I'd like to shift this for a moment, because even beyond the dollars, there's something deeper going on in how the system itself actually works. David, you've had a unique vantage point on this. You've spent decades working in jails, prisons, and psychiatric hospitals. So from your experience, how would you describe the difference between how the criminal justice system handles serious mental illness versus how the civil system handles it today? Well, I'm a psychiatrist who's been doing this for over three decades, worked in jails and prisons, currently working again at a forensic psychospital, this time on the maximum security unit. And you know, it's so sad that at this point the criminal justice system has the laws and policies that they have sufficient accountability, the ability to follow through, the ability to actually do things better than the civil system does. Because the laws and the civil side had been anemic and they just let people go. They don't realize, they don't recognize the reality, the neurological reality of the illnesses themselves, and so the criminal justice system picks up the slat And you know, I don't think a lot of people are aware of that because you know, nobody goes to visit a prison to see all the mentally ill people there, and nobody goes to the forensic psyche hospital up here on the hill to know what that is like or what kinds of people lined up there. Now there's in Texas, we're building a whole slew of new hospital beds because the balloon phenomenon, you you close down the civil hospital beds, and of course it doesn't do way with a need. And then what we owned up with was this enormous backlog of people who were incompedent stand trial, and that put the pressure on to do something. And part of the doing something is building the state hospital beds, a lot of them all over the state, and overall, when all is said and done, about sixty percent of those are going to be forensic beds. And that's just how the rules are written, how the structure is and until the civil side can do something different, something more realistic, it's just it's going to have to be that way. You know. My experience is that the two major factors that result in people being rehospitalized or medication on it here and that with the neurological illness of schizophrenia is directly attributable to the anazagnosia. You know, I keep talking about neurological illness. I consider her schizophrenia to be a neurological illness. As neurological symptoms, anasygnosia is one of them, delusions, hallucinations, neuropsychological decline, thought, disorganization. Calling it a mental illness makes it too fuzzy and it conflates it with all of the diagnoses in DSM that are a dubious validity. There's a lot of debate around the validity of that body, that billing code book that we call DSM in any event, So anazygnosia is one of the major drivers or hospital admission or readmission or getting picked up on the street by the police. And nowadays unfortunately we think, oh, if they're lucky, a felony filed and something will actually happen. The other is substance use. So the two major factors are substance use and as ignosia. I look at how the system flows, and you know, if a person can't see that he has a mental illness. Now sometimes it gets better with treatment, not consistently, and it tends to be a pretty persistent symptom in people of schizophrenia. You know, the anazagnosia doesn't go away because you discharge them to an outpatient setting, and the general strong tendency unless there are pretty robust services in places for the medication to be stopped or substances to be used. And then the wheels fall back off the bus and again find ourselves are wondering or hoping that the police get involved in charge of felony so the person is safe and the family is safe. But I notice there is this terrible reluctance to consider compelled medication in an outpatient setting. And if that was an. Option, that would materially impact the need for psychiatric hospitalizations if people have to stay on their medication. Of course, it'd be careful review process, you know, there'd be a lot of a lot of process and with representation, so for then the ability at some point to get out of that kind of an order. But you know, right now, the only place medication can be compelled is in the hospital, and then they walk out the door and it's no longer compelled. Even with AOT. AOT is a nice model but nobody compels medication in AOT. It's just not written that way right now, So it's just it's one of my frustrations. It's also interesting the variability and how the involuntary detention laws are written on the civil side. And I was thinking of the original Lessarde v. Schmidt in out of Wisconsin, where the imminent dangerousness verbiage originated, and it's ironic that Wisconsin actually wound up blocking that back. They found it didn't work too well, so they came up with a fifth standard in the mid nineteen nineties as a way out of that overly restrictive language. And I think or states are figuring out ways of doing that as well. It sounds like Arizona. It's an example of that. A big part of this comes down to perception. People don't truly understand this unless they've lived it. Yet. We also just heard that even when the need is recognized, the system is understaffed. So let's address that. How do we change it? How do we attract, train, and retain the kind of people who are willing and prepared to do this work and actually help those who need help the most. I attended a conference recently and I had the opportunity to sit with a number of psychiatry residents and I asked this whole table, why did you choose psychiatry? And everyone said exactly the same thing. They said they didn't they had planned to do something else entirely, but they went into their psychiatry rotation. They fell in love with psychiat and when they told their parents that was their choice, one even said it was worse than coming out as gay. We don't have. Any kids saying I want to be a psychiatrist when I grow up. We need to build esteem back to that profession, and we need to build up the value and the importance of our good psychiatrists that are treating the most serious mental illnesses. I want to be a psychiatrist when I grow up. We have to start attracting people into the field. Yeah. Yes, And I think that a big part of that is because I have talked to a lot of psychiatrists in our county and one thing I will say is many do not want to take the hardest cases. Many of the psychiatrists and clinicians in our county don't even understand and asygnosia that these are the people that are taking care of our loved ones who are ill. That is really a terrible thing. I mean, the education is lacking and it has not caught up to the scientific and medical protocols, and we don't have a standard of care protocol for across our nation, which would be so helpful if we had. You know, Okay, this person needs to be evaluated. Here's what we're looking for, here's what we need to do to evaluate them. I know at Meneger Clinic in Texas they always test for other diseases that could cause psychosis. Well, that's the logical thing to do first before you diagnose somebody with a serious brain disease or neurological disease. And that's pretty scary right there. So I'd say I agree with you, Rachel, but I also really don't like what I'm seeing in my little, well not so little state of the people that are treating our folks and their lack of knowledge and their lack of respect for the families. You know, the majority of care givers for people with schizophrenia and other really serious illness are the families. And like you like to say, the families are the new asylums. Yet we get no help from disabilities, We get no money to have an in home caregiver like autism and other spectrum illnesses, and that isn't fair. Many of us have had to give up our jobs. It's a full time job to take care of somebody who is ill and in psychosis, and we have no training for that. We learn on the job the hard way. Yeah, and that's a very difficult position to be put into. So, David, from a clinical standpoint, are their key factors, maybe even neurological ones that you feel. The feel still isn't fully recognizing or incorporating into how we diagnose and treat serious mental illness. Right, just briefly following up on what Linda is saying, and that is my feshion has its own anazygnosia. About anasygnosia, it's not even one of the criteria for schizophrenia. I know doctor Ammador has tried it. I mean he used to be involved in it with the researchers who developed DSM three and DSM three are and he's spoken with people about anazygnosia being a diagnostic criterion for schizophrenia, and for some reason, it's just not there. Our profession doesn't even consider it, and yet it's the major reason for rehospitalization. So taking that into account, families that are listening across the country right now, the system can feel completely different depending on where you live. So in essence, we're dealing with a nationwide problem with fifty different systems trying to solve it. So how do we move beyond the patchwork of state by state approaches and start building something more coordinated, something that makes access to care more consistent and effective across the country. You know it might be helpful is in Michigan, the governor appointed a Mental Health Diversion Council about fourteen years ago, and that council has takeholders across the system and we've recently added to the Michigan Hospital Association to it. And so this group has been able to craft the legislation to get it through the legislature because they represent all sides. We have disability rights online, we've got prosecutors, We've got the hospitals. We tell them what their interests are. Their emergency rooms are crammed, they they can't handle the population, and they know that there's a better way to treat them instead of in the hospital. So the batch of legislation that we're working hand now has passed the House and the Senate and will really make the intigment changees in how we handle mental health cases in Michigan. And we had a unanimous vote in the Senate. Kind of a weird yes vote in the House, but that's an internal plorical problem. But there's an are you saying? And we're seeing more local politicians talk about this, So it's just a matter of finding way to spread the word. I guess yes, that makes perfect sense. Hopefully we can keep spreading that message to everyone. This has been a powerful conversation and honestly, we're just getting into some of the most important parts of it. I'm going to pause things right here for today, but this is not the end of the conversation, not even close. We'll be back in just two days with Part two, where we go deeper into solutions, real world challenges and what this all means for families and communities. And then we're not stopping there. We've got a Part three coming as well, where we bring it all together and talk about where we go from here. So stay with us. This conversation matters, and we're just getting started. If today's conversation helped you see the world a little differently. Then we're doing exactly what we hope to do. Until next time, Keep believe, keep learning, and most importantly, keep asking yourself why not Me? Thanks for taking time out of your busy schedule to listen to our show today. We hope you enjoyed it as much as we enjoyed bringing it to you. If you know someone who has a story to share, tell them to contact us at why NOTM World. One last thing, spread the word about why Not Me, our conversations, our inspiring guests, the show. You are not alone in this world.