← Tony Mantor: Why Not Me ?
Tony Mantor: Why Not Me ?
NSSC: Voices of Change Part 2: Serious Mental Illness, Missed Care, and the Criminal Justice Gap
00:28:00
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- [00:07]
A
Welcome to why Not Me Embracing Autism and Mental Health Worldwide. Hosted by Tony Mantour, 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, unwavering 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 Mantour. 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 Krasian, Linda Mims, Judge Milton Mack, Rachel Strife and Ann Cochran. This topic matters. It touches families, friendships and entire communities. This is episode number two of a three part series that will 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. Let's start episode two with you, Crystal. After everything we've discussed in part one, I know you have some insights to share. What stood out to you?
- [02:28]
B
Yes, I was going to respond a little bit to everything as fast as I can here. So when they were talking about jail and not guilty by reason of insanity, again, Arizona has a bit of a problem, especially in Maricopa County. We're kind of the wild west out here. So our Rule 11, because they did not want to pay for hospitalization, to restore people to competency, they do it really poorly in the jails and especially if you have a violent crime, you will be, even if it takes years and years and years, restored to competency, even on some of the better medications, only to be taken off those medications when your court is done and you're, you're competent and you have stood trial. So we have problems in Our jail system with that. Also talking about anosognosia. I've done a few things since we talked last, Tony, and one of them was I've gone to a nursing because I'm a, I'm a psychiatric nurse. So I've gone to a nursing conference with, I want to say it had a couple hundred doctorate level nurses. I was probably the least educated person in the room and I stood up because I just couldn't take it anymore. And I asked if anybody knew what anosognosia was. So the people that were in the room were doctorate level nurses for nurse practitioners, who were educating nurse practitioners. And not a single one of them knew what anosognosia was. And so I educated them. And the good news is I did get asked to speak in South Carolina on these topics and Rachel is going to get to join me. She didn't know that yet. So again, the education in the, in the schools is really lacking. And then I just finished classes on family peer support training or something of the sort, which is really interesting. But what they said was in this class is in Arizona, and this is again particularly to Arizona. I think in the nation, people with schizophrenia have a 25 year less life expectancy. In Arizona, that's 30 years. So I did the math and I looked up average life expectancy is 79. And if you minus. So you figure a person gets schizophrenia in their 20s, right. 18 to 25, and then you don't get diagnosed for another few years. So the average age expectancy of somebody with schizophrenia is only 49. So their life expectancy after diagnosis of schizophrenia or psychosis disorder is only 20 years. We have people that have lived longer than that with cancer, they live that long with Alzheimer's disease, they live that long with Parkinson's disease, even Lou Gehrig's disease. And we don't have the life expectancy with schizophrenia, which is a treatable disease with the proper medication. And one more thing is the gap that we haven't talked about yet in the system, which has to do with the first episodes, which is what my son went through through. So when I went to seven different agencies to try to get my son hell, none of them took psychosis seriously. If he did not say he was suicidal or going to hurt somebody, they did not find his condition worthy of treatment. Psychosis wasn't. Even though he had just not too long before that, pulled a knife on his father because he didn't do it right then. Even though we have the good laws, the interpretation in these intake departments and by Doctors is not considering psychosis as the emergency that it is. And so that was a big gap in Joshua's case, which led to the death of his father and then eventually his own suicide.
- [06:13]
A
That really underscores how serious and urgent this topic is. And as hard as that story is, unfortunately, it's not the only one. And the tough part is some families carry that weight with them in silence. Laura, can you tell us about a situation that you heard of? And I think this is going to give people the reasons why these families often keep their experiences to themselves.
- [06:41]
C
Yeah, I mean, recently I was privileged to be in the presence of someone who told me one of the worst cases of psychosis that I've ever heard. And he was mentioning that his niece had gouged out her own eyeballs with a toothbrush in her state of psychosis. And the family is so broken that they're not coming forward. It's not in any of the newspapers. You'll never see it online. And these are the kind of stories we're fielding at National Shattering Silence Coalition, where we're trying to pair the actual tragedies with the mediums to educate the public and specifically the legislators who are making these choices about laws and how policies are going to be designed. We have to hear the stories, but the parents are too traumatized. And so doing Tony, telling these stories, getting them out online. I was talking tonight with our families of the state hospital, and they were so proud because one of their members was on your show, and everybody wanted to hear the show interview. And it just gave them all some hope, because like David said, you know, these forensic places that house these patients, they're kind of like no man's land. No one understands that the people are in there not because they're bad people, but because they are ill people the crime was only committed to in a state of illness, not a state of immorality.
- [08:12]
A
I think that's a very important thing that people need to understand that this is a state of illness, not a state of somebody just being immoral. I think that's a huge point for people to understand, because when we misinterpret illness as behavior or choice, it changes how we respond, and often it lowers the level of care people actually receive. And that brings us to a bigger question, Anne. Are we as a system and as a society, unintentionally accepting a standard of care?
- [08:45]
D
Yes. So I think that somehow, as a society, we have come to accept a standard of neglect rather than a standard of care for people with severe mental illness. And I think it's been mentioned many times here. It really is that educational piece. I've been working with some, the association for Prosecuting Attorneys on something we're trying to do together. And we were talking about the Matt and Michael stick case, who you had on your show last year, where Matt killed his mom not because he was a bad person, but because he was left in psychosis. Well, I reached out to Michael, Matt's dad, to see if he remembered who the prosecuting attorney was, because we were perhaps gonna get that person to. To speak. Well, he shared with me that the DA at the time who wanted Matt to be convicted for murdering his mother, he had a very different take on that several years later because he experienced it with his own daughter who stabbed him. So his whole, you know, outlook on, you know, psychosis and mental illness had changed because of that. So I think it really is, you know, helping people to understand and to educate them so, you know, that we can change these policies and that they will, you know, support them as well.
- [10:06]
A
It feels like as a society, we tend to think it's okay until it's not okay in our own family. And when that moment comes, everything changes. How do we change that mindset? How do we get people to recognize that this could happen to anyone, any family at any time, and we need to be engaged and part of the solution before it comes personal?
- [10:30]
D
I think you're doing that, Tony, by bringing stories, you are doing exactly that because people are understanding, wow, this could happen to me. And the more that families speak out about their stories, you know, they're gonna, you know, understand that their parents, just like, you know, any one of us here could be. And it's not because our kids were raised bad or, you know, they have character flaws. It's because they have brain illnesses that they did not ask for. So it really is that education. And I think you're doing a great job in helping us to spread that word.
- [11:04]
A
Well, I really appreciate that. Now, Linda, how do we start changing perception, moving people from surface level understanding to a deeper, more accurate view so that real cultural change can begin?
- [11:20]
E
I would say, too, there are so many facets of things that we can do. So as an old undergraduate anthropology major, I learned how hard it is and how long a process it takes to change culture. For instance, three years ago, I met through my book club with a freelance writer, and we worked together to get an article put together on anosognosia, because that was one of my primary advocacy goals, because most people don't know what that is. And we got a placement in People Magazine, which has 81 million subscribers or viewers or readers. And my friend Eric Smith and I. Eric said, sure, I'll do it. And then I called Dr. Amador. And so it featured Eric and Dr. Amador talking about anosognosia. And so I feel like we educated a lot of people in that one area. We need to keep doing that, because it's like a drop in the bucket. Every time something like that comes out, we have another movie or whatever that demonizes people that have these illnesses and makes them sound like monsters. And, you know, if you have the illness, it's very stigmatizing. I don't usually use that word because I find in these diseases, discrimination is more what it is. And people weren't seeing these folks on the streets untreated. I do not think that they would think that those people were, you know, bad if they understood, you know, that they're sick. And most of the time, they'll. People will say, well, why the heck don't they get help? Because they can't.
- [12:57]
A
When I first started doing this podcast around serious mental illness, I'll be honest, I didn't understand it at all. My first reaction if someone did something wrong was simple. Put them in jail. Throw away the key. Over the past year, talking with people like all of you, hearing real lived experiences, that perspective has changed. Now when something happens, I find myself asking a different question. Is this a bad person because there are bad people out there, or did the system fail them? And that leads me to this. When we start to recognize that many of these situations are actually systemic failures, how do we as a society move from awareness to action? How do we collectively say, this is not working, it needs to change. So how do we actually start to make that change?
- [13:52]
E
It's so complex and so siloed. If there was more coordination between all the different agencies and people that service people with these illnesses and more accountability and outcome measures that really show what is being successful. And by success, I mean getting people stable and in recovery and living their best lives. That's my measurement of success. But a lot of these programs and things that we have have different success majors, measures that are not applicable to what we want the outcomes to be. So that's one thing.
- [14:33]
A
Yeah, that makes total sense.
- [14:35]
D
Yeah. So I think the other thing is it has to be done at the state level, because every state varies in their laws. And that's something that we're trying to do at NSSC is trying to establish presence in each state and I'll give you an example. In Alabama, they conn. That group is fairly new. I think we had two members from Alabama. We now have over 25. And they connected with a case where a woman was trying to get her son help. They were at. The psychiatrist ordered for the person to be sectioned, called the police. The police came, who's supposedly a CIT officer, came and said, no, I'm not going to take him, because the hospital is just going to let him go. So in the meantime, the mom was running, you know, from county to county because her son had, you know, crossed county lines or whatever, and a life was taken. So our state director reached out to this mom, and now they're holding an entire symposium on this. It's the first time she's ever speaking about the incident since it happened. And they're trying to have a law enacted as well so that something like this never happens again. This is a totally preventable tragedy. The psychiatrist wanted this patient committed, but the police officer didn't think that he needed to be. Didn't take them, and as a result, a life was taken.
- [15:56]
A
That's sad on so many levels. Now, Judge Mack, there's often a perception that mental illness isn't a primary issue within the court system. From your experience, is that really the case? How are courts beginning to recognize and respond to it as a central challenge? Do you see the court starting to prioritize it in terms of strategy and resources?
- [16:20]
F
You know, I think we might even be underestimating the public interest in this area. A couple years ago, the Michigan Supreme Court decided to set up a strategic planning process. And in that process, we did a survey of our internal users, our external users, and gave them 20 problems. And the internal. The external and internal users all identified mental illness and substance abuse as the number one issue affecting the courts. So Michigan Supreme Court said, okay, our number one strategic priority for next year is behavioral health. We hired a behavioral health administrator, which was one of the recommendations of the national task force. And more states are doing that now. I know Illinois did. I assume Arizona has. I would bet on that one. Not sure about California, but I think
- [17:02]
A
there's a growing recognition as we move into legislation. One of the challenges we keep hearing is bills can pass with overwhelming support in one chamber and then stall or die in the other. How do we fix that disconnect? How do we get both sides, House and Senate, working together so when there's clear, broad support for something this important, it actually moves forward?
- [17:32]
F
Well, you're not going to change that dynamic but what you can do is make sure that you align, you align yourself with the stakeholders that matter to each chamber. In Michigan, they care. The House cares about the Chamber of Commerce. The Senate is more worried about other, other people like hospital and so forth. And so you're getting both on your side because you can, you know, I spoke into the chamber, I said, this is in your interest to fix this problem because you're suffering from this problem just as much as anybody else. And you get all these stakeholders to understand what their stake is and what they're missing out on and what damage they incur because problem's not being solved. I mean, in Michigan, the. One of the sponsors of the bill of the House was rated the most conservative member of the House, which is not my political meaning. On the Senate side, we had a fairly liberal Democrat who's a sponsor of one of my bills. So that does mean there'll be a little battle going on in the House and Senator who gets credit for the bills. That's always a tricky thing. But, but I think you build the coalition and that's what can break down the barrier.
- [18:38]
E
Also, I would add to Judge Max that you always bring it down to how much money the legislator is going to save his constituents or her constituents. And the thing is that if you treat these diseases correctly up front, you are going to save a ton of money. Because when you jail somebody, it costs so much per day, hospitalized, et cetera. And I used to work for a US Senator. Believe me, money, money talks.
- [19:11]
A
Yeah, I'm so glad you brought up saving money. We've seen models like the one in Florida that invest in treatment up front and actually save millions on the back end in jail, court and system costs. So if this ultimately comes down to dollars, how do we effectively communicate to lawmakers that spending more on treatment now isn't just the right thing to do, it's the financially smarter decision?
- [19:41]
F
Well, when I testified in front of the House and the Senate, I pointed out that of the 15,000 or 9,000 people who'd been petitioned in Wayne County, 76 had at least 10 petitions over a five year period. They're the highest users. In one year, these 76 people, we spent 3.3 million on hospitalization and 1.6 million on incarceration. $5 million. And for that, we got nothing.
- [20:08]
A
Wow. Now let's add another layer to this Homelessness. We're seeing many individuals with serious mental illness cycle from home to hospital and then back onto the streets, often after just a short stay, without the support they Need. How do we break that cycle? What needs to change so that people don't keep falling through the cracks and ending up back on the streets?
- [20:34]
F
Well, we do know from the data that a good AOT program will reduce homelessness. So that's been proven in, well, Genesee County, Michigan, New York has that data and I think that Ohio has that data as well. So we know that if you have that kind of program, you can reduce homelessness.
- [20:52]
A
That's definitely encouraging. So now we keep coming back to this revolving door, people getting brief care, then ending up right back where they started. And part of that conversation is aot, which unfortunately not every state has fully embraced. Linda, what are your thoughts on this? What's your perspective? What role could AOT really play here?
- [21:17]
E
Yes, because in our state they gave an option to the counties to actually take up an AOT program and the counties that did take it up, it has turned out to be completely voluntary, which is worthless for the targeted population, which is like just a small percentage of the people who are the sickest. So you've got to get these people in through another means, whether it be a conservatorship, a guardianship. In some places it's called, or you know, for what I call mandatory life saving treatment. I know a lot of people call it coercive, but no, it's actually life saving treatment because every day in psychosis is a matter of life and death. When you're out on the street homeless. This is something that I don't really think people understand as we were talking about that these people aren't lazy, they're not just choosing homelessness. A lot of people with serious diseases like this, they turn to street drugs, they turn to alcohol to stop the voices, to stop the hallucinations. So it's, it's a co occurring, it can be a co occurring thing. But yeah, you're not going to get these people off the street unless you basically, it's mandatory, you say that's it, you need treatment, we're going to get you off the street, we're going to help you, that sort of thing.
- [22:41]
A
Now we keep hearing about how different states look at things. What does Arizona look at it from their standpoint?
- [22:47]
B
In Arizona, we have different populations that I look at. So we have individuals that are developmentally disabled, individuals that have Alzheimer's or elderly population that require like nursing home type care or assisted living in some fashion. And then we have the seriously mentally ill. So we have three different populations. And one, one of the things that we've noticed Is that in the two populations of the developmentally disabled, like autism and the population of those that have, let's say, Alzheimer's disease, we can get federal dollars. There's a more inclusive program for those two populations. And with the seriously mentally ill, we have what's called that IMD exclusion, which keeps us from being able to get federal dollars to support this disabled population in housing who need extra supports. They aren't capable of housing themselves and feeding themselves and all these things without a layer of support with them. And so one of the things we could do federally is reverse the IMD exclusion so federal dollars can come in to do more wraparound services for the sickest of our members of our society that really require long term care.
- [24:10]
E
And this IMD thing that Crystal's talking about, this is one of the most discriminatory laws against the populations we're fighting for ever. It was put into the Medicare and Medicaid act of 1963 or some somewhere around there. And it limits the number of beds that a imd, which is. Help me out here, guys. Institution of mental diseases can have to service people from 21 to 64 to 16 beds. 16 beds. And we don't limit beds in any other hospital treating anybody else. The whole purpose of it was to keep people from building new asylums. And what it's done is locked out people from getting the treatment they need. And it's not fair, it's not right. And I have heard in California of places that actually built two facilities on their property of 16 beds and 16 beds. So it takes the construction costs and basically makes it much more expensive because you can have. What is it called when construction is done in a more efficient way? I can't think.
- [25:33]
G
Economies of. Economies of scale.
- [25:36]
E
Yes, economies of scale. Thanks, Rachel.
- [25:39]
G
So the other problem is that it doesn't even just extend to the number of beds in a facility. It goes all the way down to the level of institutional care. And so that includes things like assisted living. That is actually the bigger damage that's being done. So there is no long term care. There are no. We don't have Alzheimer's ward equivalents. We don't have group home equivalents funded by Medicaid dollars. It's really the home and community based services and long term care, not even just the hospital stay. It's all forms of institution, even unlocked group homes that cannot get federal dollars because of the home and community based carve outs that happened to developmental disabilities and elderly and physical disabled, but did not get given to serious mental illness.
- [26:36]
A
We're going to pause right here at the end of Part two, but this conversation is far from over. We've covered a lot of ground and in our final episode we're going to bring it all together, focusing on solutions, where we can go from here, and what real change can look like. So join us in just two days for part three, the final chapter of this series. You won't want to miss it. A big thank you to our guests for sharing their journey. 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 believing, 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 WhyNotMe World. One last thing, spread the word about why not me? Our conversations are inspiring guests that show you are not alone in this world.