Tony Mantor: Why Not Me the World

Denise Paley: From Crisis to Advocacy

• Tony Mantor

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Denise Paley shares the harrowing story of her son's sudden onset schizophrenia at age 18 and his subsequent five-year imprisonment without sentencing, revealing critical failures in how our justice system handles mental illness.

• Son Ellis was an honor roll student with a bright future before experiencing first-episode psychosis
• Police dismissed parents' concerns when Ellis disappeared, missing critical intervention opportunity
• Ellis has been incarcerated for nearly five years, remaining unsentenced with his case continued 48 times
• He spent 3.5 years without proper treatment for psychosis while in prison
• When finally transferred to a facility that properly treated his condition, his symptoms completely remitted
• Denise successfully advocated for mandatory crisis intervention training for Connecticut police officers
• People with serious mental illness are 10 times more likely to end up in prison than in hospital
• Contrary to popular belief, 50% of people with schizophrenia recover within 10 years with proper treatment
• First episode psychosis requires immediate treatment - early intervention dramatically improves outcomes
• Breaking stigma and sharing family mental health history can help others recognize symptoms earlier

Join us in spreading awareness about mental health in the justice system by sharing this episode and telling everyone everywhere about Why Not Me? The World.


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intro/outro music bed written by T. Wild
Why Not Me the World music published by Mantor Music (BMI)

Speaker 1:

Welcome to why Not Me? The World podcast, hosted by Tony Mantor, broadcasting from Music City, usa, nashville, tennessee. Join us as our guests tell us their stories. Some will make you laugh, some will make you cry. Their stories Some will make you laugh, some will make you cry. Real life people who will inspire and show that you are not alone in this world. Hopefully, you gain more awareness, acceptance and a better understanding for autism around the world. Hi, I'm Tony Mantor. Welcome to why Not Me? The World Humanity Over Handcuffs the Silent Crisis special event. Joining me today is Denise Paley. She will share her son's experiences with the legal system, which inspired her to advocate for legislative reform in her state. Thanks for coming on, and can you tell us a little more information about your son?

Speaker 2:

Okay, so almost five years ago to the date, so it was January in 2020. My son had previously been an honor roll student in high school. He had already, you know, been accepted to college. He was living a very normal, seemingly high school senior life, had a lot of friends, was on the varsity lacrosse team, he volunteered for unified sports. On the surface, everything was going very well for him. He was in this international baccalaureate program that we have at our high school. He had to go to the library. I think we were still on break. We were still on the Christmas break.

Speaker 2:

It was the talent event and he had to go to the library to work on a project with some friends. They do a lot of collaboration. There were only 20 kids in the school that were in the program. He left for the library, which was very typical to go work on this project before they went back to school, and he never came home. He's also very much a wolf follower. If our son didn't come home for dinner without telling us, as his parents, we consider that very unusual behavior. He didn't come home for dinner. He didn't call His dad and I started to call around to see if anybody knew where he was. His brother was looking for him At the time Snapchat was very popular trying to figure out if anybody knew where he was. We drove by the library, we drove by some friends' homes, we called some people. No sign of him. We found out he never showed up. For the library, for the group.

Speaker 1:

Wow, that's pretty scary. What did you do?

Speaker 2:

So we went to the police. He was in high school but he had just turned 18 a few months before. So we went to the police and said that they would look for him, that they would, you know, put out an alert to locate his license plate. Everything's hindsight right. So now I have all of the recordings from the police interactions and all our phone calls. They completely dismissed Behind the scenes. They were saying things like you know, these parents think, just because their son's at home, something's wrong. He probably met a girl, you know, totally not interested in us at all. At some point in the middle of the night I could see that he'd used my credit card at a gas station about an hour and a half from our home. So we called the police and we said all right, we could see that this happened. At first they sort of dismissed it. They're like, well, if that was an hour and a half ago, he's not going to be there. You can call the state troopers and see if they can go by the gas station and see. So we did. We called the state troopers. The state troopers go to the gas station.

Speaker 2:

Now it's like 1230 at night and he's asleep at a restaurant. He's sleeping in the parking lot. They never asked him to get in the car. They talk to him. They basically say your parents are looking for you. He's a little bit confused, you know. They ask him where he is. He says he's someplace. He was someplace green, like he's not really answering very coherently. The state trooper calls our police department. They call me. I say we thought it was carjacked, so we weren't thinking of psychotic weight and I'm like, if he's alive and he is an hour and a half away from home, there was something wrong. It's just not in his nature. He doesn't like to drive anywhere ever. He's never driven further than New Haven from her house, which is about 25 minutes away.

Speaker 1:

After all this happened, what was next?

Speaker 2:

So I tell the police officer if he is there sitting in a parking lot for since 10 o'clock at night, essentially from when he used the credit card, If he's there I just don't believe he can possibly be lucid or in any condition to drive. Please hold him. My husband and our neighbor start driving to Darien where he was. Police officer tells me he is not having a psychotic break, that we can determine he's fine. He said he was out with friends, which he never said because I did see the reporting and they left him. And by the time my husband and the neighbor got to the rest stop he was gone. He never came home. He had deleted all of his contacts in his phone. You know his phone was gone. He never came home. He had, like, deleted all of his contacts in his phone. You know his phone was gone straight to voicemail. No one can get in touch with him.

Speaker 2:

And the next day in the afternoon we were going to the police over and over and over again, you know, trying to show them like what normal behavior for a child was. We're showing the police officer our text thread with him on New Year's Eve because he went to a party New Year's Eve overnight, like we texted him. You know he texted us late at night to tell us he wasn't coming home and we text him back and he texts us back within 15 minutes and just what normal looks like, because this is January 5th, so it's right after New Year's, and we're just trying to show like what normal is for him. You know, you found him in Darien and an hour and a half away from home. He didn't go to school.

Speaker 2:

Something's wrong. They wouldn't let us report our car stolen. They said if we reported the car stolen he would have a record and they wouldn't do it. And they said, because we let him use it, that it technically wasn't stolen. The next day he approached a woman sitting in her car in a parking lot and he sat her in the leg multiple times and he has been in prison. He's still unsentenced. This is an acute onset of first episode of schizophrenia.

Speaker 1:

With all this that was happening, what was next? You have doctors, you have psychiatrists. How did you handle it?

Speaker 2:

So with how he was handled. Mostly the issue with the Department of Corrections is that it is not designed to treat people with a serious mental illness. It is where people with serious mental illnesses wind up going. You're 10 times more likely to wind up in prison than you are in a hospital. So that's the statistic. He was left essentially in a state of psychosis for three and a half years. They did not treat his psychosis. He had anosognosia, which I don't know. If you know what anosognosia is, yes, I'm familiar with it.

Speaker 1:

Can you explain it for our listeners?

Speaker 2:

Okay, so anosognosia is very common for people who are truly experiencing psychosis. You can see things that are not real and hallucinate, but that doesn't necessarily mean you're experiencing a disconnection from reality. So that was the case with our child. So he was truly experiencing psychosis where he had no idea that he was sick. He appeared not to us, but I could see how he could have appeared not sick to somebody. But he got progressively worse over the years. But at the time of his arrest you can still have a conversation, but you're so in a different reality. You're just so living in a different reality. So he had a belief about a metaphysical being that could destroy him and not destroy him. By kill him I mean destroy him by like create havoc in the universe, you know, like that was his mindset, that was controlling a lot of different factors in our world and that was his belief system at the time. He was left that way for years.

Speaker 1:

That's just hard to imagine. So what happened next?

Speaker 2:

He'd been sent for competency restoration. He'd been sent to a forensic hospital for a little while. You know, we had bonded him out but instead of bringing him home, but all of his care at this point, once he was arrested, was in the hands of the Department of Corrections. So there was no opportunity to get him meaningful care and he'd broken his bond when he was out because he was experiencing psychosis. Yet he was never getting treatment. Every time the psychosis while he was incarcerated would exacerbate. He would be put in solitary confinement, which only makes psychosis worse. Of your illness, your brain illness, you're subjected to a strip search and then you're brought to the infirmary. So it's very traumatizing for the person who is experiencing the episode and then you're put in solitary confinement.

Speaker 1:

Was there any type of medication that he could have been given that would have helped him through all this?

Speaker 2:

He was not given any antipsychotic medication. His father and I advocated for him through the system for three and a half years. It took three and a half years for him to get medication that would treat a psychosis and then, once he was given medication, he was given medications like a cocktail of medications that interacted with each other and he became very toxic and got very, very sick. So this was his experience from 18 to 21, until just before his 22nd birthday. And then, when he turned 22, he was transferred to another prison and there that has a population that is mostly people with serious brain illnesses in our state, and when he got there he was so sick, he was toxic. They ran blood work on him and saw how sick he was. He literally collapsed upon arriving at this new facility. Then they treat his medication.

Speaker 2:

Within weeks his hallucinations and delusions remitted completely and he has not had one since. So it's been well over a year where he has not seen this metaphysical being even once. He has a full grasp that he is sick, that he has an illness and he's been free from that state of torture now for over a year, but he is still living in incarceration. So his illness because he really was not able to act in his own best interest for the first few years so he couldn't really get in front of a judge because there were no provisions within the system to treat anosognosia or to treat him to get him to a state where he would be well enough. There seems to be a strong delay in the state of Connecticut in adjudicating cases for people who have serious mental illness. So in the state you are much more likely to be unsentenced with serious mental illness than to be sentenced.

Speaker 1:

What's the reasoning behind that? Do they give you any inclination at all?

Speaker 2:

overall in the state and even where he's being held in, the prison that he's in serves mostly people with serious mental illness, those people with mental illness that are there, more of them are unsentenced than are sentenced, and the greatest population that seems to be suffering in the state of Connecticut are young men under the age of 26. So the people with the greatest trajectory ahead of them sit languishing in our prison system. This entire time he has not had any opportunity to further his education, not that he really could have while he was so ill. He's had no education. He's had no vocational education. He's not allowed to have any contact. I've not hugged him in almost five years. The only physical contact he receives is being shackled and strip, searched for visits to hearings that have ultimately been continued. His case has been continued 48 times. In January we'll have our 49th.

Speaker 1:

What's your lawyer saying about this? Is he giving any input at all?

Speaker 2:

No, In the beginning it was because he was ill, and then a lot of it is just bureaucracy and the way the system works in Connecticut. It just gets kicked down the road. We show up and we leave. We show up knowing that nothing's going to happen and then we leave For him leave. We show up knowing that nothing's going to happen, and then we leave For him every time he still has to go, even though nothing constructive is going to happen.

Speaker 2:

So he is shackled. He is strip searched and shackled, sometimes multiple times, because transporters are what they call the bullpen. I mean, there's a saying in the court system they call it bullpen psychology. They go through this so many times they just give up and they take a plea deal just because it is so psychologically taxing. We just want to know what's going to happen to him. He just wants to know what his fate is going to be, just to be sentenced. Already Five years he has essentially been discarded. He has been attacked physically. He's been mentally tortured. He was 155 pounds at the time of his arrest. He's probably 250 pounds now. There's no exercise, there's infrequent access to fresh air. It's a brutal, brutal existence.

Speaker 1:

Wow, yeah, that has to be just so tough. Because of this, you've become an advocate for legislation to help others, correct?

Speaker 2:

Yeah, one bill that I advocated very strongly for in different iterations. Three times later it is now the law. It's for crisis intervention team training for police officers. I thoroughly believe if any officer in our police department because not one officer in our police department had crisis intervention team training, even though it's a program available through the Department of Mental Health and Addiction Services in our state, if just one hadn't, maybe Ellis's trajectory could have been completely different. Because upon listening to all of the audio conversations of the police officers, like I'm calling, saying like he never came home you know, you had him and he never came home and then the officer would say this is a family matter, this is not a police, or you know, I'd call back and then they would say the mom keeps calling and she's ramping up again. The lieutenant would say you know what to do, get rid of her. They just dismissed us completely.

Speaker 1:

This is one thing that I hear all across the country and around the world that the police force really needs help and better understanding to deal with situations like this. A good thing I'm hearing is a lot of charities and organizations are trying to work with the police to help them out, to better inform them so they can have a better understanding. Unfortunately, there is a downside and that's called it takes time.

Speaker 2:

Yeah, when you look at it I mean I live in Guilford, connecticut. It's like a little suburb, it has a very low primary You're much more likely as a police officer to have a like a domestic situation like what happened to us, than to have to pull a firearm for a serious you know, dangerous situation. I think the statistic is, upon speaking with the police chief at the time, it's more than half the calls. Yet they have no training. They had no training. So the law now in Connecticut and it went into effect this year is if you're a new police officer caught by getting hired, you have to have crisis intervention team training and every police department has to collaborate with a social worker. So that is part of a bill that I testified for and that my local senator had gotten off the ground, christine Cohen, who covers Guilford, connecticut.

Speaker 2:

I'm also the co-president of NAMI, now for NAMI Shoreline that covers Guilford. So to go through crisis intervention team training, demis covers most of it. It's a DEMIS program that goes through the Connecticut Alliance to benefit law enforcement but there is a stipend that every officer has to pay. So our NAMI Shoreline affiliate will pay for any officer within our affiliate that will get the training that's grandfathered in and doesn't have to get it for anybody before this law went into effect, so we will pay the training that's grandfathered in and doesn't have to get it for anybody before this law went into effect, so we will pay the difference. There's no cost at all to the police officer and we've also paid for dispatchers to go get the training.

Speaker 2:

Somebody from the fire department wants to go get the training? We're happy to pay for it. There have been instances where people outside of our affiliate have wanted to get the training and cable has called us and said, hey, they don't have the money, we'll pay for it. We have the money. We've raised money. We have money set aside to get more officers trained and to create awareness around how important this is. So that is a lot of what I've been doing. I attended the crisis intervention training international conference this year, getting more ideas for how we can make it better within our state, and also working with police officers who are so mentally taxed themselves so to get them into programs so that they can get mental health services themselves.

Speaker 1:

That was my very next question, and it is twofold. One is the police have such a burden put on them with situations that they don't know and understand or know how to handle yet, and that gives them a very stressful situation. The second part is how are you finding, now that you're working on legislation to make it more inclusive for all the people involved, how are you finding the reception from the police precincts, with the people that are trying to help them and inform them to make a better situation for everyone?

Speaker 2:

crisis intervention team training before. So Madison, connecticut, is the town right next to where I live, so I live in Guelph, or Madison is the town right next door. They kind of had a reputation for not embracing such programs. But since we've been doing this, they've probably sent more than I want to say 12, I'm not ready, I didn't prepare it, but I want to say they've probably sent 12 police officers for crisis intervention team training.

Speaker 2:

You feel like every class they send more officers and they send their dispatchers, which I think is so smart because they're the person taking the call and if they have the wherewithal to say you know what, maybe I should be calling 988. Maybe that's who needs to be involved. Maybe we need a crisis team. And then we do have some communities where they haven't really wanted to touch it. I'm not going to say them on the podcast, but it's a shame, because mental illness does not discriminate. Neither does autism. It's in every community, neither does dementia, it's in every community. And you should have the training to meet people where they're at, for every safety.

Speaker 1:

Yes, I agree 100%. It doesn't matter whether it's cancer, autism, mental illness. One thing in common it does not discriminate. It affects everyone young, old and everyone in between. The only way that we can make this better is what this month is all about Awareness, acceptance and understanding. The more we get people to understand this, hopefully, the better society will be.

Speaker 2:

Yeah, I agree. I think Ellis my son's name is Ellis and I think his experience has like really shined a light on that too. What happened was very public at the time. We live in this little community and you know all of this is kind of unfolding. It's almost like an outer body experience. You never know how a community is going to respond. And the day it happened somebody left dinner on our porch Every single day well into COVID. People had meals cards, a lot of wine, meals cards, a lot of wine, but just notes letters. I think just as much People realize it could be anybody, it could be anybody's job.

Speaker 1:

Absolutely. The one thing this country is, unfortunately, is if it doesn't affect us, it's not a problem. When it does affect a family, it does one of two things it either separates people or it brings them together. The good thing here is it brought your community together and good things came from it.

Speaker 2:

We were to this day. I am overwhelmed how supportive our community has been.

Speaker 1:

Yes, that's a testament to where you live 100%. Where do you see yourself, let's say, five years from now? You're advocating, working on legislation. What's up next for you since you started on this legislative journey?

Speaker 2:

So well, right now I'm working on another law, so I just sent a concept to Christine for a timelier treatment of mental illness for people who are either experiencing psychosis or who have attempted to die by suicide, because, again, if you attempt to die by suicide while you're incarcerated, you go to solitary confinement. So to get timelier treatment up front, it would save money for the state and it is just the humane thing to do. It would also save a lot of lives. Too many lives are lost for people living in incarceration because their mental health needs are not met. It's like that.

Speaker 2:

What is that Maya Angelou quote Like know better. Once you know better, do better, do better. Or once you know better, do better, be better. I don't know. I think it's something like that. But my point is I had never known anybody who'd been incarcerated in my life. I've known people who've had serious brain illnesses before, but I've never had an impact like this. My family it has changed. I have another son who's in college now. It has changed his life forever, my son's dad's life forever. Now that I know there is such an unmet need and there's so few people who are doing anything about it, this is what I'm going to be doing.

Speaker 1:

Yeah, that's just so good that you're doing this. What would you like to leave our listeners with Things that you think is important that they hear, so they understand what you've been through, what you're going through? That just might help them if they ever have to go through this themselves.

Speaker 2:

So, for somebody who is going through something like this, look for the light, look for those glimmers, look for where you be able to love and focus on that, because it's so overwhelming and so daunting. You really have to notice where there's hope For people who are not affected. We're all connected. We're all human beings. I encourage anyone who hears this podcast and who knows, once you know, say something, speak out. You don't have to become an advocate like you or I, but write a letter, make it known, get it on the radar, because people with mental illness and people with autism I mean these are very vulnerable populations, people who can need to speak out for them.

Speaker 1:

Absolutely. So many people do not understand autism or serious mental illness. They think it's a death sentence. It's not.

Speaker 2:

You have a 25% of people who have an acute onset of schizophrenia. Within the first few years it will go away. They fully recover. I thought that schizophrenia was a sentence forever. Learning more about it it's not. There's a good chance of recovery. 50% of people with schizophrenia will recover within 10 years of their diagnosis. So it all supports why early intervention matters, why you need an interdisciplinary team.

Speaker 2:

At the onset of schizophrenia. People need to know that full recovery is possible. Also, first episode of schizophrenia is more delicate window because with the first episode you really want to attack it right away and treat it and there's a mortality risk, an early mortality risk, by not treating it. I think it's like a 20-fold increase in early mortality for people between the ages of 16 and 30,. You don't treat the first episode of schizophrenia.

Speaker 2:

It's not the movies. You know what I mean. It's not what's sensationalized in the news. It is a complicated brain disorder. It's no different than having a disorder of your body. It's an illness that can be treated and you know what, More so than other disorders of the body. Full recovery is possible. I can say this and he is my child, but my son has not had a hallucination or a delusion in more than a year. This all happened within the first few years of his onset. He is, for all intents and purposes, fully recovered. I have no reason to believe he will have an episode ever again, based on the data, based on what is known about this illness. So people shouldn't make it so taboo. People should be proactive in treating it. If you think this is happening to your loved one, be on top of it.

Speaker 1:

Absolutely. That makes perfect sense.

Speaker 2:

Another thing I'll tell you is that it was in our family. We learned after this happened to my son that it was in our family. Nobody had disclosed it, that he had the genetic predisposition for this Another reason I encourage everybody to not be afraid of stigma. My family, ellis's brother, his dad we are in this with two feet. We are not hiding from what it is. We are trying to leave a better path behind us.

Speaker 1:

The problem, as I see it, is that everyone looks at schizophrenia as Norman Bates. They look at it as the worst possible situation. To be truthful, when I first started this, there was a certain amount of stigma that was with it. I questioned myself do I want to do this? Now that I've done it, I'm understanding it more. I am able to have conversation with the people that don't know and explain it more than I ever have in the past. Unfortunately, people often fear discussing what they don't understand, relying on misinformation, and they just listen to the talking heads here on TV. If they dive a little deeper, they find these conditions don't define a person. Once they do that and share the knowledge, hopefully a lot of people will help break down that stigma.

Speaker 2:

I could not agree with you. More People want to just stick with their preconceived notion and their existing biases and then they're uncomfortable when they're thinking about things another way. Schizophrenia it's not something that happens on a dime. You know people think my son left on paper, he went to the library and he never came home. To us it was on a dime. Now that we know more about it and what was going on with him Jackson had first appeared to him at the library back in August, so this happened in January. Had first appeared to him at the library back in August, so this happened in January. But because he did not know he was sick, he had anosognosia, he did not, he didn't share anything.

Speaker 2:

I wonder and we can't go back had we known it was in the family, would we have been looking at things a little bit more closely? You know our son was 18 years old. He was a senior in high school. There were a few little nuances with his behavior that were out of character. We're like he is trying to find his own way. You know we didn't really know what to make of it, but on average it takes about 11 months for a doctor to diagnose someone with schizophrenia, so it's not an easy diagnosis. There's actually a program in Connecticut it's called MindMap and it's through the STEP program at Yale and they're a resource for other doctors that they can call in. Other psychologists can call in to get help and they have found that they can reduce the diagnosis time from 11 months down to five months. So people don't just wake up in the morning and they're psychotic. It doesn't happen like that. There's this prodromal build and it's very different than what people have seen in the movies.

Speaker 1:

Yeah, that's so true. A lot of people, because they hear this and we're advocating for change, think we're against the police, and I think they need to understand that we're really not.

Speaker 2:

Yes, just for that. I'm not anti-police either. All of these crisis intervention trained officers, they're all police officers and I'm grateful for them and I really think it's a matter of education. I'll tell you this real quick. I was at a restaurant recently and this happens every once in a while, just because sometimes somebody will know me because of my son, but I might not know who they are. I was at a restaurant and I'm having dinner with a couple of girlfriends.

Speaker 2:

A man and his wife come over. You know, I'm like in my head, I'm like I'm running through the Rolodex Do I know them from school? Do I know them from the kids? Do I know them from work? Did I live in their neighborhood? Like I'm trying to figure out where I know them from. They're asking me about Ellis and how's he doing, asked if they could hug me. So months go by and I'm like how do I know them? And one of them was one of the police officers that was involved. That was saying I don't know. You know, I don't know. The mom says I'm sure he's just met somebody, you know, and I realized it afterwards and then it occurred to me like I just feel compassion for this man. You know like we're all in this.

Speaker 1:

Absolutely Well. This has been great, Great conversation, great information. I really appreciate you coming on.

Speaker 2:

Well, tony, it was great meeting you and speaking with you and I applaud you for what you're doing and I'm grateful to you for you know. Again, like when I said you want to look for the light, you're one of those lights. Thank you so much, tony. You want to look for the light.

Speaker 1:

You're one of those lights. Thank you so much, tony. I really appreciate it. It's been my pleasure. Thanks again, thanks for taking the time out of your busy schedule to listen to our show today. We hope that you enjoyed it as much as we enjoyed bringing it to you. If you know anyone that would like to tell us their story, send them to TonyMantorcom contact then they can give us their information so one day they may be a guest on our show. One more thing we ask tell everyone everywhere about why Not Me, the world, the conversations we're having and the inspiration our guests give to everyone everywhere that you are not alone in this world.