Denise Paley
Appearances
Tony Mantor: Why Not Me the World
Denise Paley: From Crisis to Advocacy
So to get them into programs so that they can get mental health services themselves.
Tony Mantor: Why Not Me the World
Denise Paley: From Crisis to Advocacy
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. 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.
Tony Mantor: Why Not Me the World
Denise Paley: From Crisis to Advocacy
It really depends on the culture of the community. So one that comes to mind that's been amazing, which had never really embraced crisis intervention team training before. So Madison, Connecticut is the town right next to where I live. So I live in Guilford, Madison is the town right next door. They kind of had a reputation for not embracing such programs.
Tony Mantor: Why Not Me the World
Denise Paley: From Crisis to Advocacy
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. 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.
Tony Mantor: Why Not Me the World
Denise Paley: From Crisis to Advocacy
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.
Tony Mantor: Why Not Me the World
Denise Paley: From Crisis to Advocacy
Neither does dementia. It's in every community. And you should have the training to meet people where they're at for every safety.
Tony Mantor: Why Not Me the World
Denise Paley: From Crisis to Advocacy
Yeah, I agree. I think Ellis, my son's name is Ellis, and I think his experience has really shined a light on that too. What happened was very public at the time. We live in this little community and 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.
Tony Mantor: Why Not Me the World
Denise Paley: From Crisis to Advocacy
Every single day, well into COVID, people have 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.
Tony Mantor: Why Not Me the World
Denise Paley: From Crisis to Advocacy
We were, to this day, I am overwhelmed how supportive our community has been.
Tony Mantor: Why Not Me the World
Denise Paley: From Crisis to Advocacy
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.
Tony Mantor: Why Not Me the World
Denise Paley: From Crisis to Advocacy
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.
Tony Mantor: Why Not Me the World
Denise Paley: From Crisis to Advocacy
And it is just the main 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. What is that Maya Angelou quote? Like, know better once you know better. do better, do better, or what you know better, do better, be better. I don't know. I think it's something like that.
Tony Mantor: Why Not Me the World
Denise Paley: From Crisis to Advocacy
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
Tony Mantor: Why Not Me the World
Denise Paley: From Crisis to Advocacy
And there's so few people who are doing anything about it. This is what I'm going to be doing.
Tony Mantor: Why Not Me the World
Denise Paley: From Crisis to Advocacy
So for somebody who is going through something like this, look for the light. Look for those glimmers. Look for where you feel the 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.
Tony Mantor: Why Not Me the World
Denise Paley: From Crisis to Advocacy
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 these are very vulnerable populations people who can need to speak out for them
Tony Mantor: Why Not Me the World
Denise Paley: From Crisis to Advocacy
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.
Tony Mantor: Why Not Me the World
Denise Paley: From Crisis to Advocacy
So it all supports why early intervention matters, why you need an interdisciplinary team 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.
Tony Mantor: Why Not Me the World
Denise Paley: From Crisis to Advocacy
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. 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?
Tony Mantor: Why Not Me the World
Denise Paley: From Crisis to Advocacy
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.
Tony Mantor: Why Not Me the World
Denise Paley: From Crisis to Advocacy
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.
Tony Mantor: Why Not Me the World
Denise Paley: From Crisis to Advocacy
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.
Tony Mantor: Why Not Me the World
Denise Paley: From Crisis to Advocacy
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.
Tony Mantor: Why Not Me the World
Denise Paley: From Crisis to Advocacy
We are trying to leave a better path behind us.
Tony Mantor: Why Not Me the World
Denise Paley: From Crisis to Advocacy
I could not agree with you more. They want to, people want to just like 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.
Tony Mantor: Why Not Me the World
Denise Paley: From Crisis to Advocacy
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. But because he did not know he was sick, he had anosognosia, he did not, he didn't share anything. 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?
Tony Mantor: Why Not Me the World
Denise Paley: From Crisis to Advocacy
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. We didn't really know what to make of it. 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.
Tony Mantor: Why Not Me the World
Denise Paley: From Crisis to Advocacy
It's called MindMath. 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.
Tony Mantor: Why Not Me the World
Denise Paley: From Crisis to Advocacy
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 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.
Tony Mantor: Why Not Me the World
Denise Paley: From Crisis to Advocacy
And it's very different than what people have seen in the movies.
Tony Mantor: Why Not Me the World
Denise Paley: From Crisis to Advocacy
Yeah. Just for the, 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.
Tony Mantor: Why Not Me the World
Denise Paley: From Crisis to Advocacy
I was at a restaurant and I'm having dinner with a couple of girlfriends. 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?
Tony Mantor: Why Not Me the World
Denise Paley: From Crisis to Advocacy
And they're just like on the verge of tears. So I'm thinking, was Ellis friends with their kids? I couldn't figure it out. They actually 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.
Tony Mantor: Why Not Me the World
Denise Paley: From Crisis to Advocacy
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.
Tony Mantor: Why Not Me the World
Denise Paley: From Crisis to Advocacy
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. I really appreciate it.
Tony Mantor: Why Not Me the World
Denise Paley: From Crisis to Advocacy
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 used my credit card at a gas station about an hour and a half from our home.
Tony Mantor: Why Not Me the World
Denise Paley: From Crisis to Advocacy
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 anymore. 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.
Tony Mantor: Why Not Me the World
Denise Paley: From Crisis to Advocacy
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 out of 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.
Tony Mantor: Why Not Me the World
Denise Paley: From Crisis to Advocacy
The state trooper calls our police department. They call me. I say, we thought it was carjacked. So we weren't thinking of psychotic rape. 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 in the New Haven from her house, which is about 25 minutes away.
Tony Mantor: Why Not Me the World
Denise Paley: From Crisis to Advocacy
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.
Tony Mantor: Why Not Me the World
Denise Paley: From Crisis to Advocacy
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... And by the time my husband and the neighbor got to the rest stop, he 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.
Tony Mantor: Why Not Me the World
Denise Paley: From Crisis to Advocacy
No one can get in touch with him. 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.
Tony Mantor: Why Not Me the World
Denise Paley: From Crisis to Advocacy
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 an hour and a half away from home. He didn't go to school.
Tony Mantor: Why Not Me the World
Denise Paley: From Crisis to Advocacy
Something's wrong. Like, 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.
Tony Mantor: Why Not Me the World
Denise Paley: From Crisis to Advocacy
This is an acute onset of first episode of schizophrenia.
Tony Mantor: Why Not Me the World
Denise Paley: From Crisis to Advocacy
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.
Tony Mantor: Why Not Me the World
Denise Paley: From Crisis to Advocacy
They did not treat his psychosis. He had anosognosia, which I don't know if you know what anosognosia is.
Tony Mantor: Why Not Me the World
Denise Paley: From Crisis to Advocacy
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.
Tony Mantor: Why Not Me the World
Denise Paley: From Crisis to Advocacy
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.
Tony Mantor: Why Not Me the World
Denise Paley: From Crisis to Advocacy
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.
Tony Mantor: Why Not Me the World
Denise Paley: From Crisis to Advocacy
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.
Tony Mantor: Why Not Me the World
Denise Paley: From Crisis to Advocacy
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.
Tony Mantor: Why Not Me the World
Denise Paley: From Crisis to Advocacy
So when you're living in incarceration, when you have an exacerbation 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.
Tony Mantor: Why Not Me the World
Denise Paley: From Crisis to Advocacy
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.
Tony Mantor: Why Not Me the World
Denise Paley: From Crisis to Advocacy
So this was his experience from 18 to 21 and so 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.
Tony Mantor: Why Not Me the World
Denise Paley: From Crisis to Advocacy
He literally collapsed upon arriving at this new facility. Then they treat his medication. 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
Tony Mantor: Why Not Me the World
Denise Paley: From Crisis to Advocacy
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 interests, you know, 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.
Tony Mantor: Why Not Me the World
Denise Paley: From Crisis to Advocacy
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.
Tony Mantor: Why Not Me the World
Denise Paley: From Crisis to Advocacy
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.
Tony Mantor: Why Not Me the World
Denise Paley: From Crisis to Advocacy
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.
Tony Mantor: Why Not Me the World
Denise Paley: From Crisis to Advocacy
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.
Tony Mantor: Why Not Me the World
Denise Paley: From Crisis to Advocacy
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, every time he still has to go, even though nothing constructive is going to happen. So he is shackled.
Tony Mantor: Why Not Me the World
Denise Paley: From Crisis to Advocacy
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.
Tony Mantor: Why Not Me the World
Denise Paley: From Crisis to Advocacy
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.
Tony Mantor: Why Not Me the World
Denise Paley: From Crisis to Advocacy
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.
Tony Mantor: Why Not Me the World
Denise Paley: From Crisis to Advocacy
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
Tony Mantor: Why Not Me the World
Denise Paley: From Crisis to Advocacy
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.
Tony Mantor: Why Not Me the World
Denise Paley: From Crisis to Advocacy
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.
Tony Mantor: Why Not Me the World
Denise Paley: From Crisis to Advocacy
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 domestic situation like what happened to us than to have to pull a firearm for a serious, you know, dangerous situation.
Tony Mantor: Why Not Me the World
Denise Paley: From Crisis to Advocacy
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.
Tony Mantor: Why Not Me the World
Denise Paley: From Crisis to Advocacy
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. 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.
Tony Mantor: Why Not Me the World
Denise Paley: From Crisis to Advocacy
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 Navi 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 or anybody before this law went into effect. So we will pay the difference.
Tony Mantor: Why Not Me the World
Denise Paley: From Crisis to Advocacy
There's no cost at all to the police officer. And we've also paid for dispatchers to go get the training. 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.
Tony Mantor: Why Not Me the World
Denise Paley: From Crisis to Advocacy
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.