← Tony Mantor: Why Not Me ?
Tony Mantor: Why Not Me ?
NSSC: Voices of Change Part 3: Serious Mental Illness, Missed Care, and the Criminal Justice Gap
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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, 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 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 Kresian, Linda Mimms, Judge Milton Mack, Rachel Strife and Ann Cochran. This topic matters. It touches families, friendships and entire communities. This is the final episode of our 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 this episode with this. When someone says they have the right to refuse help, but they're clearly in the middle of psychosis or severe mental illness, are they truly capable of making that decision? And if not, how do we ethically step in without being seen as taking their rights away, but instead as trying to save their life?
- [02:40]
B
You know there's power of attorneys which can be used for mental health and you could, for those people, you can say, look, while you're competent to make decisions, you can fill out this power of attorney and you can define who is going to be your care provider and you can define what kind of treatment you'll accept. And you can take yourself out. Now that'll take yourself out to a point. It won't take you out in case you become violent and actually dangerous to some other people, but it'll take you out if you're at risk of harm. Now, there's a summon in the Carolinas has come up with that form, but it hasn't worked so far.
- [03:10]
A
David, psychologically speaking, when someone refuses help, but their thinking is being shaped by psychosis, what are your thoughts on helping them?
- [03:19]
C
Yeah, I think of Grandma. You know, people care about Grandma.
- [03:22]
D
Yeah.
- [03:23]
C
You know, and if schizophrenia can be ballparked with dementia, then people might sort of get it. I remember I used to work in a family medicine doctor's clinic in Florida, and he wound up being elected to the Florida House. And I went and talked with him in his office at a time when I was advocating for a state hospital to stay open, and it got closed. But, you know, I was talking about Ana's ignosia, and I was asking, why is it that a woman, you know, who's 30 years old and neuropsychiatrically gravely disabled is sleeping under the bridge to stay away from satellite and satellite beams? Why is that okay and considered freedom of choice? But if we find Grandma wandering around the neighborhood, we do something different. And his response was pretty blunt and it was pretty earthy. He said, people care about Grandma. They don't give an F about that girl under the bridge.
- [04:18]
A
Yeah, that's sad to hear.
- [04:20]
E
I recently talked to a sheriff in our town, and he was the head of the unit that services our town. And I said, what if my mother had dementia and she was wandering around and wandered into the traffic because they had just arrested somebody I knew because he had done that, and then he had hurled a threat at the officers or something. I don't know all the circumstances. And he said, oh, well, if somebody with dementia was wandering around, we would never take them to jail. And I said, it's the same thing. No, it isn't. It's completely different. There is a chart somewhere that shows these similar symptoms with schizophrenia, anosognosia, dementia, and Parkinson's. Anosognosia, because anosognosia exhibits in stroke and different other neurological conditions. And that is a big, big problem that you just brought up, Dr. Hagar. That's a big problem because that's what we're fighting against. And they're supposed to be trained in CIT training.
- [05:20]
F
Yeah. Somehow people think that they have a choice when they're younger and on the streets again. This. This class that I was in today, I kept hearing that while they're choosing to live streets, they're choosing this, they're choosing that. And it's a lot of misinformation that I think is getting Better, but we have a long ways to go.
- [05:38]
A
Now, one option Judge Mack just brought up was power of attorney. My understanding, in many cases, this can develop between 17 and 25. At that age, they are just living in the moment, not living for a moment when they might need help making decisions. So where do we go from there?
- [05:55]
E
We have psychiatric advance directives that all the officials in the state keep pushing parents to have for their psychiatrically neuropsychiatrically challenged loved ones. But the trouble is, if they go back into psychosis and if they say they want to rescind that, they can. So what? I mean, the only good thing in it would be that they put in where they'd want to get treated, what drugs they don't want, you know, their preferences. But what good is it really if it can just be rescinded once they're sick again?
- [06:26]
A
What really hits me is the time loss. Someone brought up air and he and I talked about it and it took him years to find the right treatment. And he's not alone. I've heard that same 10 year gap over and over again. So how do we shorten that gap?
- [06:42]
E
You have to do mandatory care. You have to, because that's what happened to Eric. He got into a great assisted outpatient treatment program in Texas with a wonderful judge. I mean, what else can you do? You're asking really hard questions, Tommy.
- [06:57]
F
But I like it. I like it.
- [06:59]
E
Yes, you just have to, because I know so many young people that have lost. And also, 10 years is the average from the time you show symptoms to the time you get an actual diagnosis. And a lot of these kids start getting sick in college. And now the colleges, they cannot call the parents. They have these laws. They can't call and say, hey, something's going on with your kid. So it's just very frustrating. And everybody shuts out families. And it's not right because the families are the primary caregivers, because the mental health departments, they have abdicated their responsibility and all of the agencies, we're not paying for any assistance. So, you know, either your kid is going to be on the street, in the jail, or you have to take care of your kid. Well, that's not right. And that is unethical for a society to dump that on parents who are not trained. And, you know, the advocates I work with now, I'm pretty enraged about it. My background is in public policy, and I never, never in my life when I was young and naive in grad school would ever think that this was happening in our country. Because it is not just. It's not right, and it's a violation of people's human right to have health care, basic health care.
- [08:18]
A
Crystal, I think you have some thoughts on this as well.
- [08:21]
F
Yeah, I have a strong opinion about this because I have raised a daughter with autism who, at one and a half years old, we kind of thought something just isn't. Isn't right. She's not doing the typical milestones. Told the pediatrician, by two, they were like, yeah, we need to send her. And by two and a half, she had the diagnosis of autism. And I was told all about it. I was given resources, all the acronyms. IEPs, ISPs, BP. You know, mean the whole caboodle, more than I could even deal with as a parent. The difference was with Joshua, nobody wanted to call it what it was. Nobody wanted to say, you have schizophrenia. And I watched how in autism, the ability to be able to diagnose autism now, even as a baby, because they're not looking. You know, I think we can do that. I, and maybe Dr. Hager will agree with me. I think there's symptoms that are prodomal, symptoms that we could recognize sooner, that we are ignoring. And if we could get these kids during their first episode or even before even tell them, hey, your kid's kind of a little off. You know, I'm a little bit concerned that they could be developing a psychosis disorder or schizophrenia. This is what it looks like. This may not be that, but, you know, let me know if you see these symptoms. I mean, think of the difference if we just openly discussed that your. Your loved one is in trouble.
- [09:43]
G
Well, my son's friends actually pointed out to us that he shouldn't smoke marijuana because he's sounding bizarre, saying strange things. And when he went missing, the friends felt so guilty that they didn't say anything to us sooner. So I think we're discounting the fact that we could also be utilizing each other. You know, the colleagues, the. The actual education of youth so that they can be on the lookout for their friends for signs of psychosis. You know, when we first. My son with psychosis, he said, you know, I'm. I'm not real. You're not real. As a mother, I had no idea what to do with that. I never heard that before is shocking. And these illnesses are shocking. Delusions, especially bizarre ones, are so disconcerting that it feels like the floor's coming out from underneath us. If we could give that shock value to the parents and the youth in high schools or middle Schools, then maybe we could be seeing some change.
- [10:43]
A
What's really hard to reconcile is in this particular case, I'm about to tell you, everyone was doing their job, yet the system still failed them. A 17 year old kid went out and did not come back. His mother went to the police. The police said, oh, he's 17, he's probably just hooked up someplace, don't worry. One o' clock in the morning, he was at gas station and their credit card dinged. They called the police, they said, do not let him go, we are on our way. They got there, no kid, no police. So they go to the police station and they tell them, well, he was just sleeping in the car, he wasn't a threat to us or himself. So they let him go. So they're still looking for him. And the next day he stabs a lady a few times in her leg, winds up in jail. Unfortunately, it took five years before it all got worked out. Another sad fact, three to four years, he was in a state of psychosis before they finally figured it out. From that very first night until it finally got resolved within the court system, it took five years. How do we change that dynamic?
- [11:48]
E
We get treatment for those people asap with whatever tools we have. And if we don't have the tools, we make them make the tools.
- [11:59]
A
In this case, he was in psychosis for three and a half years, but they couldn't get anything done because during that time he became of age 18.
- [12:07]
E
Not right.
- [12:08]
B
You know, I want to get back to something. I want to get back to something Linda said about the college. Can't tell the parents about the mental health crisis. I assume that's not because of hip. It must be because of something else
- [12:21]
E
because it's a bad law.
- [12:23]
C
I forget what it's called, but there is a, there's a law.
- [12:26]
F
It's ferpa, probably.
- [12:27]
B
So we're in Michigan. One of our bills, which everyone's supporting, would mandate the hospitals can share information with families in the event of emergency or for continuity of care. And because our Michigan statute is focused more on history than what's happening right now, that history becomes very important. So it's incumbent upon hospitals now to reach back to find out from families, well, what's going on and what's the history.
- [12:51]
D
We actually, we passed a law in Arizona called John's Law that requires psychiatric screening agencies to obtain history from the families. And that's one challenge we've learned is just passing laws, which we have passed several in Arizona, is that few agencies are following the laws that we've passed, but we're working on that. We're working on the implementation. The other thing that I think is a problem is that a lot of agencies view being more strict with HIPAA as better. And so Arizona even passed a HIPAA clarification statute in 2016 to precisely allow and spell out that you could give information to families if it was in the best interest of the patient. And, you know, all of those things that HIPAA does allow, we put it in our state statutes, but agencies are not. They are adding their own HIPAA restrictions because it is viewed as better to be more restrictive with privacy.
- [13:53]
C
One of that's just fear of reprisal. If you err on the side of being too strict, then you can't get in trouble with Medicare.
- [14:00]
F
And I also think you brought up a really good point, Tony. You made me, like, think, you know, the big picture of parents calling the police and parents calling the hospital and parents calling, you know, to check on their 19 to 25 year old, you know, their first response is they're 18, they can, they want. I mean, in the big picture, when you, you're talking to police who have all sorts of behaviors of this age group, how do they pinpoint what could be more alarming? So is it education about schizophrenia and that this age group is susceptible to this illness and that it needs to be taken more seriously? And you bring up a good point that I really hadn't thought of before.
- [14:41]
A
The beauty of my podcast is I hear these stories and by asking these questions, hoping that it impacts the listener enough, they ask these same questions to the people within their communities. If we can get people asking these questions, maybe we can get the level of training around conditions like schizophrenia and anosognosia. We have to find a way to bridge that gap so that everyone gets the help that they need.
- [15:07]
F
And part of that is sometimes when we're calling the police at the, when our kids are this young of an age 18 to 24, 25, we don't even know what's going on. So we don't even articulate it very well. So some of it isn't even their fault. Some of it's that we don't have the language yet to even be able to effectively communicate what's going on because the doctors aren't giving us the language.
- [15:31]
A
So that leads me to this. There seems to be a common thread of the unknown. Families don't know what to do. And in many cases, law enforcement doesn't know what to do either. So how do we bridge that gap.
- [15:44]
E
Well, in California, they don't have to do CIT training. In our county, San Diego county, they do some other kind of training. Usually NAMI will go in. They have some people that will go in and help with the training and talk about the symptoms. Talk about, like if somebody doesn't appear to be, you know, following your direction, it's because they might be listening to voices in their head. You know, basically, don't take it personally, don't think they're trying to defy you, et cetera, et cetera. But I'm telling you, I don't think for many of these officers it is really settled in. And I was talking to one officer and they said, if you are not open to learning about this, you're not going to take it to heart. So we really need only officers who want to do this kind of thing and that can learn about it and really internalize it so that they can do a really good job with it. I mean, we shouldn't have to rely on officers, but we do. Right now, again, the doctors need to come out. The doctors need to be talking. They need to be saying, this is not acceptable. This is a neurological disease. This is not acceptable. Because they don't listen to parents. I'm telling you, I help people in our county. And you can't believe how many people have tried so hard to get their kid. It's awful to get their kid into care. And you know, when you're a mom or a dad, but mostly the moms, I find, and you have taken your little infant from the very beginning into the doctor to keep them healthy with their inoculations, their checkups, etc. Etc. And then right at 18, when many start exhibiting the symptoms, you're told you no longer can do that. You no longer can help your child. And then you have people in your county, you call all these people when your child starts getting sick and they say the best thing you can do is kick them out of the house, make them homeless. Perhaps they'll get picked up by the cops and then put in jail and maybe they'll get treatment. No, that's not acceptable.
- [17:40]
A
I've heard that scenario so many times. Put your child in the system. That goes against everything that we've ever been told. And that was keep your child out of the system.
- [17:52]
E
Exactly.
- [17:53]
A
So how do we fix that broken trust and create a system that actually supports families instead of overwhelming them?
- [18:01]
H
I think a lot of it goes back to that education. This morning I was at a collaborative meeting with CIT offices. And so there were organizations there, NSSC got a seat at the table, and all of the officers that were there, they really care and they want to make a difference. And so I think it was you, Linda, saying, you know, we have to get to the offices that want to be a part of this. Right. And, you know, those are the ones that should be on the CIT teams. And it really. It was encouraging for me to be in that room and see so many people that did care. So I think. And we brought our brochures, had them spread out all on the table, and they were taking them. So it really is, you know, that educational piece. And we've had one CIT officer, he took our. One of our brochures at a community event we hosted a couple months ago, and he put it on LinkedIn saying, this is the best thing that I've ever seen. Most helpful.
- [18:57]
C
So in the spirit of education, Education, education. I wonder, just wondering, should we plant the seed in high school school?
- [19:04]
A
I think education in any form definitely helps. The only thing I've been told about schizophrenia and an exognosia is that it happens over a period of time. And when you're in that family dynamic, it's just a daily routine, and you don't really see it coming on until, boom, it's there.
- [19:21]
C
Yeah, I remember that with. Remember that with my sister. Our family normalized her oddities.
- [19:26]
A
Yeah.
- [19:26]
C
It's just the way she was. And. And eventually things fell apart.
- [19:30]
D
Yeah. Our school counseling staff and our teachers at our high school should have known the signs were easily recognizable. They work with children of that age. They work with teenagers. There were so many clear signs of illness. Not one person who should have recognized it had been trained and could even tell us what was going on. Right. I don't work with adolescents. I only have my one. There was no training whatsoever for any of this high school staff on psychosis and recognizing it and any of that. You know, they're trained to offer students to come on in and if you're, you know, tell us if you're stressed out. There is no psychosis education happening effectively in high schools right now. The other thing that I just wanted to say on the last conversation was, where is the APA outrage? Why are mothers in T shirts taking pto, traveling our life and livelihood to sit for hours testifying on bills? I've been writing legislation, I've been meeting with stakeholders, I've been meeting with lawmakers. Where is the APA outrage? Why aren't they fighting for state hospital Beds. Why aren't they fighting the IMD exclusion? Why aren't they fighting for hipaa? Why aren't they helping draft laws and meeting with stakeholders and showing up and testifying? We've had a couple doctors come weigh in on certain bills that had to do with pretty much irrelevant things. But when it comes to treatment, where is the apa? I was a cardiologist and all of my patients were having bypass surgeries and then being released to nothing without appropriate rehab and dying in streets and my work wasn't effective. I would be outraged. I would be fighting for Medicaid dollars. I would be fighting for rehabilitation programs. I'd be fighting. I mean, if my people couldn't even get a house, where is the APA outrage? Someone please tell me.
- [21:29]
G
I was going to say, if people don't know APA stands for the American Psychiatric Association. I absolutely agree. And the point you are making about the teachers not knowing. Rachel, I had maybe five meetings per year with my son's IEP teams and every year it was the same story. They just said it was adhd. They kept saying, you know, he asked to have more ADHD medicine in order to be handled. But now I know more that the signs he was showing were precursors to the psychotic illness. And they just didn't see it because everything got put into that category of adhd. So I think schools do need more training. I mean, high school might be too late. I think we need the middle school age kids to be talked with because in high school they know it all.
- [22:16]
A
I can't remember who said it, but it seems like everything now is coming down to the dollars spent. So how do we get it across to them that spending a little money could actually be saving a person's life? So if we could get them thinking that, yes, we're spending money, but in the end we're actually saving money as well, how do we bridge that gap?
- [22:39]
F
So again, just a couple things that I'm going to compare again with autism. Most elementary schools, they know when something's going on with a kid that has autism. I mean, they recognize it, they're educated on it. They clearly know what autism is. Now, the middle and high school, you know, they, they do need to be, they need to be trained on what this looks like. I don't know if it's nurses or counselors or to teach the parents, but also the research. Until we start looking at it before the crisis hits and see what the early signs are, until we start studying that scientifically, we're never going to catch it like we do with autism, we're never going to catch it early. And the interesting thing is with autism, autism's going to play out no matter how it's going to play out, especially for the severely autistic. Now, if you're not as severe, you're going to have a chance for complete recovery. Schizophrenia can have complete recovery if we just find it in almost everybody.
- [23:33]
A
We've had a great discussion today. I really appreciate every one of you taking the time to give your input. As we wrap this up, I'd really like to hear from each of you on what's the one thing you want listeners to walk away with from this conversation?
- [23:48]
G
Well, I wanted to give marching orders to listeners. There is a bill in Congress, HR4022, that will end the IMD exclusion and as a plus would also add that states need to be more robust with their assisted outpatient treatment. So this bill is being voted on. Now, if you write to your congressman, you can maybe affect change that would have lasting results.
- [24:12]
C
Education, start early, influence a generation to maybe care more and understand what's going on. Some of them will have an interest because they'll know that they'll have some experience with people who are falling apart at their age.
- [24:26]
E
I so agree with Dr. Hagar because again, in college, I have gone back to my undergraduate college and urged them to make sure that everybody, freshmen, on in professors, the clinics, have education about these illnesses. I think young people are so much, much more open because so many of their classmates are on medication. You know, they've diagnosed a lot of things early, not specifically schizophrenia. And I do want to end on this note with schizophrenia. I want to say it is a very scary word and it's not the right word to describe the illness. In Japan, they renamed it integration disorder. And so many more people came in for treatment. Schizophrenia means split, split mind. I believe it comes from Greek. This is not a split mind. This is an integration, whatever you want to call it. I know there is a big cadre of psychiatrists who are trying to get it renamed because it isn't correct. So here we're talking about these illnesses. They have the wrong nomenclature. And I think that describing these illnesses in the correct way will mean all the difference between if people can accept what you're saying to them and listen and then reevaluate their ideas about what these illnesses are and that they're treatable.
- [25:46]
D
I think we need significant healthcare, workforce development. And it needs to happen in medical schools, in nursing schools, even in, you know, pre Med and nursing programs. Our workforce does not understand serious mental illnesses. Our psychiatrists are not trained appropriately. We have, especially in community mental health, where new graduates of nursing or medical school are placed with the sickest patients in community treatment and really don't know how to manage psychosis or anosognosia. It's really an incompetent workforce right now, and we need to develop that whole system from the ground up and get more state hospitals, more academic programs, more skilled psychiatry residency programs, and all of
- [26:36]
F
it in memory of my son Joshua. I think I would like to choose that psychosis needs to be treated as the medical emergency, that it is more like a heart attack or a suicide attempt, and we need to treat that illness, and it needs to be considered a crisis.
- [26:54]
H
Well, Crystal kind of said what I was going to say, so I was going to say that we need policies that are going to change from a standard of neglect to a standard of true care, and also to treat psychosis as a medical emergency. It is.
- [27:10]
B
Well, I'm on the civil justice side, and so I would urge policymakers across the country to adopt the four principles adopted by the National Judicial Task force back in 2022. That begins with, first, having earlier intervention before someone is in crisis, before someone needs hospitalization. Second, outpatient treatment should be the default remedy in mental health proceedings. Third, there should be procedural reforms to simplify the process for going forward. I mean, for example, a psychiatric nurse practitioner with experience in psychiatry ought to be able to testify in probate proceedings. And then finally, this might be the hardest one, is having a pathway for emergency psychiatric assessment and intervention. I was part of a group that took a look at this, and basically, someone could be certified to require care, and then for seven days, they could provide care over. Objection. And after seven days, if it's still a problem, then you would petition. But up with those four pillars, we could intervene earlier and do a lot better job.
- [28:10]
A
All good points. I really appreciate all of you taking the time to do this. What we covered here wasn't just a conversation. It was something real, something meaningful. I truly believe that anyone listening is going to come away with a whole new level of understanding because of what you brought to the conversation.
- [28:27]
G
Thanks, Tony.
- [28:28]
E
Thank you so much.
- [28:30]
H
Thank you, Tony.
- [28:31]
B
My pleasure.
- [28:32]
D
Thank you, Tony. Doing good work.
- [28:34]
G
Thank you, Tony.
- [28:35]
C
Appreciate your time.
- [28:36]
F
Thank you for having us.
- [28:37]
B
We appreciate your work, Tony.
- [28:39]
A
Oh, it's been my pleasure. Thanks again. 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.