A Plan of Action for COD (co-occurring disorders): The Harris Project (Episode 53)

A Plan of Action for COD (co-occurring disorders*): The Harris Project

*mental health challenges plus  and substance misuse or addiction

What comes first: substance use or mental health challenges? It can happen either way.

Adolescence is a time of change and challenge. It is also during this time that most mental health disorders arise. In fact, 22% of teens 13-18 have a diagnosable mental health and/or addictive disorders, and 50% of all cases of mental health disorders arise by the age of 14 and 75% by the age of 24 (MHFA.org).

We 3 Moms have been there. We share our family story in books and in this podcast, to help others.

Our guest has the same mission - to turn heartache into action, and to honor her son. She was recently featured in the NY times, and she’s here with us today. 

Stephanie Marquesano, mom of Harris (who died at age 19 and had a COD, or co-occuring disorder), is founder and president of the project named for him - with a mission to change the way these two conditions are noticed and treated.

 We ask: 

• Tell us about Harris. If you had to tell the story of his life before the illness and after the illness in five minutes what would you want us most to know? 
• Early signs: you said in NY times “He was crawling out of his own skin half the time.” - is there anything you wish you had known, anything you wish someone else had known or done? 
• Can you share your journey to find psychological and psychiatric help? 
• The combination of substance abuse and mental illness often co-occurs, and yet… not treated together .   Talk to us  about the “addiction treatment nonsystem” and what should replace it.

CODA goals include:

• Increased awareness and understanding of co-occurring disorders for youth.
• Increased early intervention for mental health challenges and substance misuse leading to a decline in incidence of youth mental health crises, drug misuse, addiction and overdose.
• Increased likelihood that those already impacted by co-occurring disorders will seek help and support.
• Raise a generation without the stigma typically associated with mental health challenges/substance misuse.
• Encourage youth to positively impact their peers/communities by building connections to each other and being a link to resources.

LINKS:

https://theharrisproject.org/
Twitter: @theharrispro

 Facebook: https://www.facebook.com/theharrisprojectCOD/

Instagram: https://www.instagram.com/theharrisprojectcod/

Mindy and her book: https://mindygreiling.com/

Randye and her book: https://benbehindhisvoices.com/

Miriam and her book: https://www.miriam-feldman.com/

Transcript

Copy

SPEAKER_03 0:00

If you've ever heard we can't treat your loved one's mental illness until we treat the substance abuse, or we can't treat the substance abuse because your loved one has a mental illness, you'll definitely want to listen to one family's story of what happened, what should have been done, and what now can be done with co-occurring disorders. Welcome to our podcast, Schizophrenia. Three moms in the trenches. From the place where schizophrenia and real life collide. East Coast, West Coast, Middle America. With Miriam Feldman, Mindy Gryling, and Randy Kay. Welcome to episode 53. We are so excited about this tonight. The title for this is A Plan of Action for COD or co-occurring disorders, specifically the Harris Project. And you'll learn all about that in a second. Was is a co-occurring disorder? It's mental health challenges plus substance misuse or addiction. They are separate but often together, as we'll learn from our guest. So we want to talk about, you know, what comes first, the substance use or the mental health challenges. It can really happen either way. And I took that sentence directly from the HarrisProject.org website because I wanted to get it as accurate. You'll meet our guest in a moment, who is the founder and president of the Harris Project. You know, adolescence is a time of change. It's during this time most mental health disorders arise. And we here are three moms, Mindy, Mimi, and I of sons. And tonight four moms of sons, whose mental illness symptoms began, as is often the case, at adolescence. Uh, the three moms, we're lucky that our sons are still here with us. We fight the challenges with them, and sometimes by their side, and sometimes just in the wings every day. We each wrote a book about our family experience, and we want to keep it going in this podcast to help other families. Our guest today has the same mission to turn heartache into action, to honor her son with that action. I'm so excited to hear about it. She was recently featured in the New York Times, and we'll ask about what's happened after that. And she's here with us today. Uh, Stephanie Marcassano is mom of Harris, who is unfortunately no longer with us. I'll let her tell her story. And as I said, founder and president of the project named for him. So welcome, Stephanie.

SPEAKER_02 2:37

Thank you so much for having me. Um, I'm really excited to be with all of you. I I think that connecting with moms and connecting with passionate people who have found their journey something that has been both challenging and rewarding is something that I've been looking forward to. So I'm so glad that you reached out.

SPEAKER_03 2:55

Oh, so glad you said yes. Um, I'm just going to ask the first question, which is now, of course, stories could take three hours to tell. So if I'm sure you've told Harris's story many times over the past three few years since he's uh passed away, but if you had to tell, let's just do two parts. If you had to tell the story of his life before the illness and then his life after the illness, it doesn't really happen in a day, but you know, after the illness was clear, what would you most want us to know about Harris? Give us a brief version of the story.

SPEAKER_02 3:29

So it's interesting. So Harris was a very precocious, walked early, talked early little boy, um began struggling with an anxiety disorder when he was three years old, actually. So he was already facing um challenges of feeling discomfort and embarrassment in ways and shapes that many young people would never even think about at that age. And so our spidey senses were already tingling sort of out of the gate. But on the flip side, he was a very empathetic, social, world-thinking, deep-thinking, emotional kind of kid, you know, wrote poetry from the time he was little, but was also a super athlete and really funny. And, you know, in English class, if they were reading some like horrific play that nobody cared about, he would get the job of like using like, you know, various voices and playing every part in the play. And so he was a very um complicated little kid and a complicated teenager and a complicated young adult. And I think that, you know, for us, there's there's like every second of every day, he's sort of there with us. Like we talk about him almost as if he's still present, even though he died on October 23rd, 2013. You know, a presidential election happened, a world event happened, he was deep into TV and reading and learning and sharing. And I think a lot of times when we think about our young people who struggle with their mental health, we think about kids who aren't super social, they're kind of shirking in the corners. And you're not always thinking about a kid who, like all the energy and light was around him. He projected out. And so that was hard for people around him to how do you have an anxiety disorder when you're you know in the middle of like the laughter? And sometimes it would take him an hour and a half to leave the house in the morning, or if he had to get on the away bus to go to a soccer game, that was like a terrible day for him in school because he was so anxious about it. So he was complicated, you know, for good, for bad, for challenging, for love. You know, he loved really hard. That was who he was.

SPEAKER_03 5:34

So what I told, I mean, I will just say that my son was similar. I mean, he we I have a I finally took it down, but he had clear contact paper on his wall, and all his friends would come and sign it because he was Mr. Popularity. He was anxious, but not as crippling as it sounds like Harris had. But you know, there was anxiety there, but we always kept it. It was okay. It was like we can manage this, we can manage this. And and I know in all of our books we honor our sons with their strengths because it's not just about their illnesses, but what happened in eighth grade?

SPEAKER_02 6:08

So, eighth grade, he had stopped playing soccer because the anxiety had really taken over for him. And so he was doing different things and hanging out at different places, and he was seeing a therapist that our school district had recommended, and my husband and I started noticing, and so did everybody around us. I mean, I was on the I was on the school board at that point, that his behaviors were becoming more and more unpredictable. Um, everybody in my community thought he was just trying to get away with stuff because here I was on the school board, I had this power, and my husband and I really thought he was losing his mind. So I present to young people all the time, and this is the moment in the story where I say, marijuana being legalized for recreational use gives you a vision that it is safe, it's a plant, it grows, it's fine. Look up boys, anxiety, marijuana, and psychosis. And that's what was going on in our household because unbeknownst to us, Harris had started smoking marijuana. His therapist knew. So by the end of eighth grade, we pulled him out, we were homeschooling him. I resigned from the school board. We went to what would be our last meeting with that therapist who said, Harris has become more than I can handle. And by the way, he's been smoking marijuana. I thought he was just experimenting, but he could have a problem.

SPEAKER_01 7:32

You know, uh you're ringing so many bells with I'm so excited that you're here and about this program. You know, my son also has a co-occurring disorder, but we also have other parallels. Like Randy said, I think all of our kids had anxiety of some sort, maybe not quite as much, but our son had anxiety when he was in preschool. And he there was a the mother giving the party for her daughter, uh, told me afterwards that she thought Jim had anxiety and she was concerned about him. And she was a preschool teacher, so she'd had training in that area. When Jim was getting sick when he was older, I was also on the school board in my uh school district. So I can see the parallels there. One thing um that's different though is you got help from your school district. When I called the school district and I um was on the school board, so I was kind of, you know, a hesitant and more hesitant than I usually am because I didn't want to feel like I was throwing my weight around or something. But um we didn't get any help. We were just sent to our insurance company. So I would like to hear more about how the school district actually did help.

SPEAKER_02 8:48

So I so I I I caution you to think like they did the best they could, but they were, I mean, they sent us to somebody who really didn't understand how to manage what was going on. Um, when he was facing those challenges in school, they were keeping him, you know, in school suspension, they didn't want him there. There it was not really a very clear understanding of the damage to self-esteem, the trauma that comes along with being painted as sort of the bad kid when really you're unable to control your behaviors. I mean, Harris wanted more than anything else to be able to make it through the day like everybody else. So I will say that in ninth grade, we had him evaluated before he would be allowed to go back to our school district. He went to a different therapist, he went to a psychiatrist for the first time, he picked up the ADHD diagnosis as well, and he went on medication for the first time. Well, like anti-psychotic. I mean, was he having psychosis? They actually put him on concerta, which worked well for both the anxiety and the ADHD. So we actually had a couple of very good years. He went back to playing soccer, he hadn't played in four years. He was all league, and then he was all league in all section, he was on the student council, and he was doing, you know, I always, when I present together, I always put in these like anecdotes. So he was doing so well that he said to us, I don't even have time, like I don't need to go to the therapist, like the medication is working fine, and we're like, yeah, everything's great, we're good. And so we stopped seeing the therapist, stayed on the medication, and then 11th grade came and ACTs and SATs and stress and pressure, and am I playing college soccer? And he's getting looked at, and we're such a close family, and eighth grade was such a traumatic experience for all of us. The anxiety disorder, like it came back, it overwhelmed the medication. He didn't really want to share it with anybody. He went to a party in my community. Prescription pills were available on the table. He took those pills, and that's when for us I could say, like, the game was over. So within a year and a half before he died, four inpatient substance use treatment programs, two outpatient substance use treatment programs, one short-term mental health inpatient program. Each program said Harris has co-occurring disorders. It was the first time we ever heard of it. Each program said they treated co-occurring disorders. Now, my husband and I are educated, we're a caring, loving family. Harris went into these programs, you know, optimistic and hopeful. They never got to the mental health piece. They always led with the substance use. You're sitting in a group, they want you to remember life before substances. It's like, I love my family, love my house, love my car, like my brain works a million miles an hour. What am I going to do when I get out of here for things to be different? And I think, you know, my daughter was a senior in high school when Harris died. And I think a 19-year-old dies in a suburban community. Everybody kind of comes, where do we make donations? What do we do? And in the chaos of my household, it was completely clear. They said he had this thing. We had never really heard of it before. Now he was dead. I want to figure out what co-occurring disorders is. I want to figure out what we can do to change the outcomes for people because it didn't make sense to me. It didn't make sense to me that so many young people were facing similar challenges and so many young people were dying. So that became sort of my personal call to action, somewhat selfishly in the beginning. I wanted to get out of bed. I wanted to show my daughter she could go away to college. You know, I wanted my husband to be able to go out back to work. And so it became sort of a thing to do, to fill time and to see where it went. Wow. And you were able, oh, go ahead, Randy.

SPEAKER_03 12:41

No, just so just to be clear, Harris did die of an overdose.

SPEAKER_02 12:45

He died by accidental overdose out of a substance treatment program. He had been taken out of a sober home in Florida where he was. His roommate had brought pills in. He had not taken pills in a very long time. He was going to college down there, and um, they put him in a hotel. They said, You don't need to come down. He's going to go into this hotel just to be away from the house because he took the pills. We're going to check on him, and either he'll go to detox or he's going to be just fine. So, a 19-year-old with an anxiety disorder, we're listening to the professionals. We don't go down. One of my biggest regrets, and I'm often, you know, what is that we didn't go down because a 90-year-old should not have been alone with an anxiety disorder in a hotel. He invited people in that he knew, somebody brought the pills in that he took. We have his computer, and he actually searched how much he could safely take of what ultimately killed him because he had been abstinent from substances for so long, which is very common.

SPEAKER_01 13:42

Okay, thank you, Mindy. How how long did it take to get from marijuana to opioids and how much was in between? What was the timeline there? You know, all of our sons used marijuana, and it's people I didn't know how dangerous it was to developing brains. What was your trajectory and when did you find that out? Was it before or after he died?

SPEAKER_02 14:05

So the eighth grade situation with the marijuana, then he goes to high school. I'm not going to say that he never smoked marijuana. I'm sure he probably did, but there was never anything like from literally ninth grade through 11th grade, he was so engaged, active, involved, carrying it. Like it was, it was like having our son who would before he was three back. And then um, and then things started in 11th grade. And it was pretty apparent at the ends of 11th grade that there was something up again. And once again, I think the school kind of acted as, you know, like this, whatever's going on is terrible. I think he was re-traumatized. And I think, you know, one of the things that I've learned, because we talk a lot about trauma and we think about trauma the old way, you know, you're domestic violence, you're in a fire, there's an explosion. You don't often think about the trauma that comes from not having what you're struggling with recognized as a problem. And so I think that that situation, you know, that happened towards the end of 11th grade, brought him right back to eighth grade. It was very hard for him to sort of recalibrate and so the trajectory downward by so ends of 11th grade, we're concerned that there's something else going on and that there's pills involved. He goes into the first inpatient rehabilitation program the day after the St. Patrick's Day Parade, 12th grade. And then within a year and a half, he's dead.

SPEAKER_03 15:35

We each have daughters as well. And so we in fact we did an episode with our daughters as guests. And and they were actually, I learned a lot from not just listening to the other, but listening to my own daughter because it was a venue for her to share her pain. Um, I just made a speech Thursday night uh at a fundraiser for a local international clubhouse model, and you know, inevitably someone comes up afterwards to say, What do we do? And it was a father and a daughter. And I could see in this daughter's eyes how much she loved her brother and how frightened she was. Because, you know, with this gizo effective.

SPEAKER_00 16:17

Um Mimi, do you have a question before I I mean I'm just the the echoes in the story, you know, the thing that I'm struck with as the years go by is this connection to anxiety. Because you know, Nick was a kid who seemed like the golden boy until he wasn't, and that was well into his teens. But now I look back and now I see the signs of that anxiety, and you know, it's such a precursor, it seems to be a precursor to you know all the mental illnesses, and it's something that we're not really trained to look for, you know. Nobody in our family had that, so it's you know, I was a you know, I'm a you know, pull yourself up by your bootstraps kind of a mom. And it I look back on it now and I realize so many times I didn't recognize his anxiety, and that resonates for me when you say the thing about school and how difficult it was for your son, and the fact that they go through this and and there's not a recognition of it, and then I think it pushes them further away in terms of trying to get out. Absolutely.

SPEAKER_03 17:28

Yeah, so you know, in the interest of time, because I have a feeling the four of us could talk for uh two hours, so we have a sense of of Harris's life and and the the tragic, truly accident that happened. And I have a suspicion that had he lived longer, he might have ended up developing schizophrenia or something more than anxiety, but that's just exactly what I was thinking, you know, because at the time he died, that's about what my son looked like too.

SPEAKER_01 17:58

Yeah.

SPEAKER_03 17:59

So, but at any rate, that that is I I would like to ask you, we're gonna turn for about five minutes to what you are discovering in your zeal and your advocacy that, you know, what could have been done differently. And then I want to talk about the Harris Project and what you have founded and created to help things happen differently. So I'll start with that first question, which is you know, looking back now, uh hindsight is everything, right? What do you wish you had known, or what do you wish the system had done or could have done? You know, if they had known this, then that might not have happened. What are a few things that come to mind?

SPEAKER_02 18:42

So out of the gate, I think that every therapist, particularly those that treat young people, even if there's no substance involvement, should begin the conversation about the risks of substance use when you have a mental health disorder, no matter what it is. I think that that baseline information would be the foundation for good decision making by the young person, families knowing, you know, what you may think of as typical experimentation, like the bell should be ringing, this could be a real potential problem. And I think that that is sort of the first easy thing that can be done. You know, if your child is going through stuff, you know, I understand you can search their room and check, but but but to really have the conversation before first use about what those risks are, game changing. Then the awareness piece moves from kind of everybody being on the same page to what are we going to do about it. So, you know, when I present to young people, I always say, is my wish you're you're completely abstinent because your brain isn't fully developed until you're 25 and you're taking a chance no matter which side you're on, you know, you can have no mental health disorder, use substances, your brain changes, now you're developing a mental health disorder. But if you can start thinking about your why, if you can, you know, am I feeling anxious? Am I uncomfortable going to that party? Do I want to be more sexually promiscuous? If you can start identifying that, then you know, well, I'm not doing this the way other people are the way I think people are doing it. I may need to talk to somebody. So all of these like consumer education moments, I think are the things that we ignore often in this country. We tend to kind of, it's you know, overdose, suicide, and they kind of those end results. And we even silo like the end results. If we really started looking at everything through this co-occurring lens in the early intervention, the prevention stuff, I think that we can make a huge impact.

SPEAKER_01 20:38

Wonderful.

SPEAKER_03 20:40

Awesome.

SPEAKER_02 20:41

So tell us about the Harris Project. So um, so I sit at my kitchen table and I have this vision, and I figure that I'm gonna unpack co-occurring disorders and I decide to focus on. I'm kind of like a multi-level thinker. I'm an attorney by training. And so I'm thinking, well, the system failed us. So we have to do work with the system. As a PTA president, school board member, Girl Scout, troop leader.

SPEAKER_01 21:08

I think we'll all the same things with me. We must be sisters.

SPEAKER_02 21:13

I think we can do stuff in that prevention world, right? Because we we used to bring those programs in and they didn't really do anything. I mean, here I am bringing them in and they went nowhere. And then actual treatment, like what are we doing? So I in the beginning, I used to say whichever was bubbling is the is the path I went down, and then all of a sudden it all started firing together and it all came together. So um, so on the system side, I got connected to Dr. Ken Minkoff really early on. Um, you know, when we first started thinking about doing a round table and writing a white paper on best treatment practices with our Westchester County Department of Community Mental Health and Orange County and Putnam County, our local counties.

SPEAKER_03 21:53

And Ken is like So those are those are counties in New York, if you're a listener, not in the not in the Northeast. So You know, uh just uh just north of New York City. Go ahead.

SPEAKER_01 22:02

And could you could you tell us also who that doctor is?

SPEAKER_02 22:06

Is he sure? So Dr. Ken Minkoff is an addiction psychiatrist who is an internationally recognized systems change expert in the co-occurring disorders space. So when you get connected to somebody like Ken, and you had already sent out invitations to a meeting to explore writing a white paper, and I write the way I speak. So I vomited this all out to this connection I now had with Ken. And he literally said, Can you call me now? And I got on the phone with him and he said, So I've never actually spoken to a parent who understands co-occurring disorders the way you do. I have good news for you and I have bad news for you. He said, So the good news is you don't have to write the treatment model. The Substance Abuse Mental Health Services Administration has already written it, federal agency TIP 42 on treatment for people with co-occurring disorders. The bad news is it was written in 2005. And if people were using it, young people like Harris would still be alive. He said, so I understand.

SPEAKER_03 23:08

Yeah, I know I'm looking at it. Oh well, let me just absorb that. This was written in 2005. It's been available. No one is following it, and kids are dying. Exactly.

SPEAKER_02 23:20

So when we think ultimately at the end of this, like the call to action, believe me, we have a really rock solid one. But but so for me now, I don't have to raise bazillions of dollars to write the treatment model, like it's there. And I needed to understand the lawyer in me like, well, what has gone wrong that we're not actually using it? And so here's the deal. And I actually present to young people because they're the ones that want to be advocates and really want to be out there and do things. So every state in the United States decides what it does with its mental health and its substance use dollars. So New York State has our two siloed Office of Mental Health, Office of Addiction Services and Supports, separate funding streams. Federal government writes a treatise like this, you know, spends so much money, but every state decides what it does with those dollars. So it's very complicated to use that book if your system is siloed. So the federal government is where it should be. Our local counties, for the very, you know, if you have a good commissioner, are pretty much where they should be. The state is the barrier to actually doing this. So, but honestly, that whole, it's like a 600-page book. Do you know what it comes down to? Integrated assessments. You should assess somebody for their mental health and substance use when they walk in the door. You should create an integrated treatment plan that addresses the whole person. You know, stages of change and supportive recovery and whatever door you work walk through, that's where you should get your treatment. You shouldn't be sent from here to there. You shouldn't have sequential treatment, like, oh, you take care of your substance use and then come back to me with your mental health, or let's go there for your mental health and there for you. Like we take our most complicated people and we make them have to jump through hoops to get this right when it's really as simple as bringing them in, making them feel welcomed, giving them a sense of hope, supporting their families and loved ones using motivational interviewing techniques. And so our entire Seven County Mid-Hudson region works with Penn Minkoff on systems transformation. Um, we've now started getting some real support from the state on this, and it's it's moving. Okay, so that's good news.

SPEAKER_03 25:32

This is all just in New York, or are you creating a model for other states to possibly Ken has been everywhere and anywhere.

SPEAKER_02 25:40

He and I actually zoomed and did a presentation in Australia. So the challenge is that Ken has had a lot of momentum in certain localities through the years, but most don't ever complete it. And so I'm not not to toot my own, believe me, I don't want to be me in this conversation, but if you ask that, we get our commissioner, like, you know, why is it more successful now than when we when I heard Ken Minkoff speak in 1999? It's because somebody's at the table who's holding everybody accountable. We collaborate with our hospitals, our agencies, our providers, our community organizations, local government, everybody looking at how to be better, quality improvement. So we move ahead. But then here I am, I'm also doing coda, co-occurring disorders awareness. Now I'm in the schools, posters behind me. Right.

SPEAKER_03 26:28

So let's let's let's talk about let's talk about that. What's I mean, there's so much. So we're talking about the system, and then we're also talking about something to do with the posters behind you and a peer run coda. Like, can you can you uh tell us about that? Because on on the one time you're doing like politics and legislative policy, right? And on the other hand, you're you're taking your mom's heart and go to my happy place and go to your happy place. So talk to us about that.

SPEAKER_02 27:01

So it started with a very small PowerPoint and showing um the slideshow that Harris's friends put together for his funeral to show young people that um young people with co-occurring disorders walk amongst them and look just like them and have friends of every race, creed, and color and are active and involved, and things can still go wrong. And and then I really gave them the facts, the information. Harris's poetry is in there. And what I found was they really connected to the message. They finally started understanding the why. Why should I say no? Why does my first let's start with the why does my mental health matter? Because when I don't take care of my mental health, I do things to cope and manage. I navigate to substances, I develop unhealthy relationships with food, I get addicted to online gaming, and we start getting them to think about themselves, their friends, who they would go to if they were worried about themselves or a friend. That's how we take a very like mom non-clinical message. We created social emotional learning tools, what's important to me, to start having them find their voice when they're advocating for themselves to can sit outside of a disciplinarian's office in a school. And so they're what's wrong with you? You're doing that. But now I filled out, you know, what my struggles are, what my challenges are, what my hopes are, what my strengths are. And so we're really creating an opportunity for young people to be an active part of the change. And we often think about things, you know, top down, bottom up. I was getting into schools because I wasn't causing any harm. But what I learned very early on, and I had to start telling schools if you're bringing me in, be prepared for kids to self-report, be prepared for them to bring their friends in. And so I always started, you know, if your school has me here, they're ready for you. If there's something that you're concerned about, these are the people that you speak to. Then it then we start having youth summits in our county. You know, the county supported it. We started getting funding from some of our hospitals, then we created a whole logo with our two stars and we told the story behind the stars. Then we started having awareness games and homecomings, and literally parents would be like, I'm sorry, co-occurring disorders is our homecoming theme. Like, how is that gone? And I said, you know, just watch your kids, the field announcements, all about mental health, all about pathways to substance use and really creating empowered decision makers. And so, you know, it started moving in in all directions, and then there was a missing piece. The missing piece was now I'm talking to kids about co-occurring disorders. They're seeing themselves in the narrative. They know someone, where are they gonna go for help? So we have our co-occurring system of care committee. Every one in the seven county region each has one. In Westchester, I co-chair hours. Everybody said, I know who I'm gonna navigate people to, underinsured, no insurance, Medicaid, private insurance, but they're all there. But what are they actually gonna get when they go in? During the pandemic, I got funded, and you might have read about it in the New York Times article, encompassed that evidence-based treatment protocol, once-a-week therapy, integrated for you, focused on your substance use, focused on your mental health, focused on your triggers, not abstinence-based, but harm reduction. But many and most find their way to abstinence because with a mental health disorder, as you can imagine, most people do best not using substances. But that's your journey. And that to me was when the home run happens because now we're focusing on systems, we're creating that prevention movement, and we have actual treatment.

SPEAKER_01 30:41

This is incredible. And I'm what gonna ask you how much the opioid settlement money has greased the wheels for all this to happen. But before I ask that, I will just say, you know, that money is in every state and it's doing a lot of good. I'm not sure in all states, though, it's connected as much as you have connected it in New York with mental illness. And I think that absolutely needs to be done. So could you tell us how much did the opioid money help to be able to do all this? And how how did you get it to be the co-occurring disorders and connected with mental illness, which is, I think, the magic potion that you have created.

SPEAKER_03 31:28

Yeah, and that is that is the legislator in Mindy coming out like, okay, wait a minute.

SPEAKER_02 31:35

Where did the money come from? So this is something that's not really as reflected in the news piece as as it could have been, but I mean, obviously it was a lot of pages. But here's the fun part, and you're really gonna love this. So I get connected. Um, Senator Pete Harcombe gets elected. He becomes the chair of the Alcohol and Substance Use Committee for New York State. He and I actually met, you know, I set up a meeting before he was even sworn in, and I started the conversation, and he himself is very open about his own recovery and his journey, and he very much connected to the co-occurring message. And he became a very strong supporter of drafting legislation for New York State to create a single integrated agency. It has passed the Senate three years running, has not just sponsored for the first time in our assembly this past year. And I know the momentum is now going to be there. Well, you know, he had a lot of press conferences, a lot of events, a lot of opportunities that he gave me to talk about the vision. Our attorney general, when we were drafting the language for the opioid settlement law in New York State, included co-occurring disorders throughout. And then I was nominated by the New York State Association of Counties and appointed by New York State Senate Majority Leader Andrea Stewart Cousins to the New York State Opioid Settlement Fund Advisory Board. So I am one of the 21 people who helps to guide New York State in the expenditure of funds. Our seven county region, our commissioners all wrote a letter saying, please invite us to the table where we'd love to share what we're doing. And ultimately, there are two topics that are going to be overlaid on every one of our recommendations. One is equity, and the other is co-occurring disorders. So from an entirety from criminal justice to pregnant women to prevention to treatment to harm reduction, layered in through Department of Health, sort of you know, safe consumption hubs, all including co-occurring and integrated care. And so that to me is something if I were ever to say, what could I use this platform for? It would be that for every parent, every loved one, everybody who's been impacted by the opioid epidemic, think big, think transformative. This is an opportunity to really change the system to one that I think the federal government really designed it to be, but we've created these unnatural barriers. You're one person, one set of experiences.

SPEAKER_01 34:04

They don't belong in separate places. That's so beautiful. How much you mentioned going to the White House a couple of times after the New York Times article. So hooray, hooray. How open are their ears to the helping with the dangers of marijuana and early drug use on the brain? And I will just say I'm a Democrat. And so I know that you know we Democrats are the ones promoting the legalization. Um, and in my state anyway, there was not any money or any effort to educate. It just kind of happened in the dead of night at the last minute, the legalization of more uh some types of marijuana. Uh so how much are you hurt at the White House on these kinds of issues?

SPEAKER_02 34:50

So I try to find the balance between what's easily accomplishable and what is more politically charged. And so instead of waiting into the which substances are good and which substances are bad and how that's going to impact, I really continue to beat the drum about co-occurring disorders. So here it is, um International Overdose Awareness Day. I am invited to the White House for a very small, like, you know, 12 people around the table, plus the Office of National Drug Control Policy, Dr. Gupta, um, the second gentleman, Doug Emhoff, is there, and you kind of figuring out where you're going to sit. And I had the very good fortune of sitting directly across from them. So everybody started telling their stories. And I, you, and this is something I'm adding now to my conversations with the kids. Never think something is just a photo op. If you are given three minutes, you use them wisely. So I talked about what I do, and then at the very end, I said, you know, shameless self-promotion. There was this peace in the times. And the second gentleman said, Wait, I read that. That's you? Wow. And I thought, okay, we're good. And then people continued. And after I spoke, everybody started talking about mental health. And then Admiral Winfield, whose son died of an opioid overdose and he's been very public, leaned over and said, My son could be Harris. So when they did the closing comments, um, the second gentleman spoke specifically about his interest in mental health, about this interest he's now having in COD, as he referred to it, and talking about, you know, young people that he can think of through his time with his own children, like people they knew, and it started connecting. And then I only printed one thing ahead of this, but I'm gonna say I was driving back from Washington, and the readout, I had never seen like a White House readout before, but I was getting gas. And I'm like, oh, like, wouldn't it be really great if you know this is about fentanyl, it's about drug trafficking. So they basically include in the the first thing just what it, but then we go right into the second parent paragraph. Family members shared their personal experiences and raised awareness about accessing treatment and support for individuals, including those with co-occurring mental health and substance use. Oh, yay, yay, yay. And that came ahead of trafficking. And I thought, okay, like they, and then it was suicide awareness or prevention day, and they tweeted about co-occurring disorders because I said, you know, even causes of death are siloed, and these are the same people. And a lot of times, even with you know, suicide, there are substances on board, and we need to think about this together. And then I was invited back and I was there this past Friday. And now we've got the recovery community, you know, the activists who were talking about tearing down silos and integrating care. And I think that, you know, when the AIDS epidemic happened, there was Amthar that focused on research and kind of wearing your suit and appropriately, you know, presenting. And then you had, you know, act up and you were chaining yourself to the desk and you were saying what we needed. I feel like there's sort of this convergence now where this might be the moment where we have a plan, we have a model, we have a call to action, we have additional funding. Let's rock and roll. In a minute. That's wonderful.

SPEAKER_03 38:10

That's amazing. And and in a minute, I know Mimi has a question, so I'm gonna throw the ball in her court in one second. Uh, this is all mind-blowingly amazing. Just preparing you, then I'm gonna ask you two things, which will be about the regular mom who's not a lawyer and who doesn't, you know, what where they can go for help and suggestions. And then I'm gonna ask you to at least explain one of the posters behind you. But Mimi, what is your question?

SPEAKER_00 38:40

Well, I'm gonna bring it back down to like the more individual experience, and that's you know, my experience with Nick, and I think a lot of us were you know, we have our political beliefs about marijuana elite and sort of legalization, and then we want you to take down the owner kid, and um and I just wonder how the parent is can educate themselves or can be educated to understand what's going on because all the kids were smoking, they're all doctors and lawyers and married and have kids, and my kid sits in a room all day, and I don't know, like, and also uh back to uh what you're talking about about getting help is my experience with it was yeah, it's either one or the other, and if it's both, there's nowhere to get help.

SPEAKER_02 39:32

Right. So let's talk about marijuana for a second because I kind of punted, I feel bad, Ninji, I kind of like left that hanging. But the bottom line is I think that young people, you know what we talked about at the beginning, you have a mental health disorder, you're maybe seeing somebody. What kind of psychoeducation do you need out of the gate? Like for me, Harris should have known it's almost like having a peanut allergy. For somebody like you, this could be really bad really quickly. And the harm that it can do to your brain is something that is unpredictable. And I will say, um, anecdotally, two weeks before Harris died, Stu Leonard's is a supermarket not far. I was in the Stu Leonards parking lot. It was like raining and like the sky cleared. Harris called from Florida and we were having a conversation. He said, Had I start never started smoking marijuana, none of this would have happened. Wow. And I said, Well, what do you mean? And he said, Well, you know, you think marijuana is going to like mellow you out, but it didn't really always mellow me out. Sometimes it made me more anxious, sometimes it gave me panic attacks, but I couldn't stop. So even though I knew it wasn't working, I needed to do it. And then ultimately, when I found my way to those prescription pills and they numbed me out completely, that was like when the game was over for me, because that was something I couldn't get out of at all. And so I think that it's important to educate and empower both the families and the young people. Like it's not okay for everybody. Um, not everything is okay for everybody. And then even if you were walking into it, what do you need to be aware of? You know, it's not okay if you're feeling that way. And what should you be doing about it? And who do you talk to? You know, even with CODA, with our co-occurring disorders awareness, we have our two-star logo, we tell the story, but we also are hashtags. Coda connects. Everybody has the power to connect and support one another. Hashtag be the link. Who would I link to if I was concerned about myself or a friend? We want those proactive opportunities to not feel shame, to not feel like there's something wrong if we're not feeling okay, and to really create those human conversations and connections, which have been really, really effective, way more than you would think. Wow.

SPEAKER_03 41:53

Yeah.

SPEAKER_00 41:54

Do you think that if from the get-go, you know, my kids grew up in the just say no era, I don't know if they still do that anymore. But um do you think uh, you know, the day of where the cops would come and talk to you, but do you think that if we started to frame it back to what you said about why are you doing these drugs? And um, because I think a lot of kids still have the idea about drugs as it's some sort of rebellion and it's fun and it's you know it's part of growing up and rejecting adults and all of that. If we started to frame it so that people, kids especially understood that these drugs are like crutches in a lot of ways, they're not a fun thing that you can do, and they're not something that is gonna be your sort of screw you to the world because you're so different than everybody else, but rather these are crutches, you know, alcohol, drugs, all these things are what people do when they're not they're coping mechanisms when you're not feeling okay.

SPEAKER_02 42:53

So it's interesting. This is almost like an unexpected softball. And if you were gonna say, like, what else, what else do you have going on? So here I was the PTA president, bringing in programs and doing this stuff and thinking we're making a difference and realizing that we really weren't. That, you know, the kids who didn't need to hear the message, it didn't matter, they were the ones listening, and the ones who needed them, and the messaging was really off. So here I am doing our coda stuff. It's really going well. I'm in a very small county, but we have, you know, 42 school districts, 48 high schools. It's feeling good. You know, we got proof of concept, but we're not really evidence-based, but we're feeling good. I go to Albany this past spring with the New York Times reporter in tow for a youth summit with young people that I've never seen before. They've never heard the message. And I say to her as we're driving up, like, this could be really bad. She's like, Don't worry, I'm not going to make you look bad in the article. It'll be fine. It'll be, and I'm thinking, oh, this could go south really fast. Do my presentation. There's a line, like hordes of kids coming to talk. But this woman comes over and she's like, So, I am the Northeast coordinator for students against destruction. You know, Red Ribbon Week, they are there, 8,000 chapters in the country. She's like, we have been looking for a mental health message. We're not reinventing the wheel. I know they're going to want to go with you. We have one meeting. I'm supposed to have a planning meeting before I meet with the CEO, Rick Burt. And I reach out, like, when are we setting up to plan? And they're like, oh no, no, Rick wants to meet you. We're like good to go. And I said, What do you mean? They're like, oh, we're doing coda with you. Okay, so Red Ribbon Week this year, I am currently working with them on the entire game book for Coda for Red Ribbon Week. Like we are now going to be infused in 8,000 chapters across the country. So we're DARE, the success rates for DARE were never good. SAD was doing really well, but they do a lot of traffic safety.

SPEAKER_03 44:49

So SAD is students against destructive decisions, and CODA is co-occurring disorders awareness. Okay.

SPEAKER_02 44:57

So we are now cross-branding. We are bringing in the red and green ribbon and tying them together to really embrace the mental health piece of their messaging. And when you talk about kind of again, the mom at the kitchen island with a vision, a hope, and a dream, and really building so much capacity, even with sad clubs here in Westchester County. But then somebody who has such a big footprint in the nation says, we're introducing you to everybody. We want to, you know, be partner. We don't want this to just be a local thing. We want this everywhere.

SPEAKER_03 45:31

And the New York Times was there to see this happen, right? Exactly.

SPEAKER_02 45:35

And so people were like, oh my God, did they see you in the New York Times? And I was like, no, no, no. They're actually one line in the New York Times piece because we were already moving along. And Jeanine and Jolandi, who wrote the piece, I constantly sent her pictures. Like Rick Burt, the CEO of Sandma, were with Dr. Gupta on Friday. We were on a phone call on Thursday. And I'm like, oh, I'm going to be in DC on Friday. He's like, wait, I'm going to an event at the White House. I'm like, me too. He's like, we're going to meet, we're going to actually meet in person.

SPEAKER_03 46:01

So Stephanie, this is this is, you know, we're actually running out of time. And I know it's it went so fast. This is such an honor. So since I've mentioned it, if you could read one of the posters behind you and just these are things that the kids created as good messages. Can you read a couple to us? And then I have a final question.

SPEAKER_02 46:19

But we have you are the greatest project you will ever work on. Progress, not perfection, a bad day doesn't equal a bad life. And then like be the link, and then you're not alone. It's good to ask for help. We give some of the statistics. And you know, one of every honestly, one of the favorite ones is the Venn diagram. Mental health on one side, substance misuse on the other, and then the overlay with co-occurring disorders. So the goal, like there's nobody else in the nation that's doing prevention on co-occurring disorders. Having our own stuff really allows the messaging to be ours and to be concrete and give the facts and information we want.

SPEAKER_03 46:56

Awesome. Thank you. And you know, and and I will, I think it bears mentioning that, you know, because our sons did live past 19, we each saw their what is this? Is this anxiety? Oh, now they're using pot, what's going to happen? We saw our sons morph into full-blown schizophrenia with uh more than a handful of hospitalizations and and symptoms that last way beyond the crisis. And uh I I think that many of our listeners are dealing with schizoaffective and psychosis and schizophrenia, and we don't know if Harris was headed that way. We, you know, we don't know. But I certainly think, and I think we can all agree that having co-occurring disorders treated together as one thing, increasing awareness, uh, getting the message out to the young kids that they have decisions to make because this could happen to anybody, and doing whatever we can to help substance use and abuse not make things worse. Because I don't know where my son, he might be better if he'd never smoked pot. I don't know. You know, we don't know. So this is if you're listening to this thinking, oh well, my son, you know, her son just had anxiety, like, don't go there because we're all in the same boat here. And substance abuse, I don't think any of these four moms would go, oh, it would have been the same without pot. I think that the danger is there, and I so applaud what you're doing. Um what final messages would you have? And oh, and tell us where we can find out about the Harris Project and what somebody can do, grassroots in their community. Can the Harris Project help them? So I want that link. And then any final messages you have for practitioners and for families.

SPEAKER_02 48:47

So um, so you can reach out, theharrisproject.org is our website. It has not really been updated because my board is like, you know, with the Times article coming out, they wanted me to take a pause and not overfill it. And then um, we're very big on social media. So Twitter, it's at the HarrisPro. On Instagram, it's the Harris Project C O D. On Facebook, it's the Harris Project COD. And then for practitioners, I think, you know, it's important, particularly on the mental health side, to really work with families and young people about this relationship to start to, you know, bringing materials in. I'm happy to share the materials we have, you know, our co-occurring disorders rack hard with facts and information, to start laying the foundation for things to think about. I think that if practitioners feel that they're in over their heads when they're you know meeting with a family, I think that it's important to say that early on and to help them navigate to better fit resources for them. Because once a young person develops that therapeutic relationship and that is lost, there's trauma that comes along with that. They think they've done something wrong, or if they're not feeling better, they start that impostor thing. They start telling people what they want to hear. So really being mindful of that. And then, you know, for family members, I want to make sure that if there are listeners who've experienced loss like mine, don't look at me and think, I can barely get out of bed in the morning. How is this woman doing what she's doing out of the gate? This is what I needed to do to survive. This is my own internal drive. You know, I don't expect most people to kind of look at this and say, this is what I want to do. But if you are looking at some bite-sized pieces where you are, you know, I have a PowerPoint that could easily be used with your own child story. You know, you can replace the slides on Harris with your own child. Or, you know, if your county or state is having opioid settlement meetings and there are two minutes where you can make comment talking about co-occurring disorders, asking what they're doing to actually be, you know, using best and promising practices, those are easy things to do. And I think honestly, this opportunity to just say co-occurring disorders is a thing. It is the combination of one or mental health challenges and substance misuse and addiction. 22% of our young people have a mental health with disorder with severe impact. You know, 50% onset by 14, 75% by 24, 14 to 24 is where a lot of young people think experimentation is a rite of passage, not recognizing the relationship. These are very simple messages that can really make a difference for families. Wow. Thank you.

SPEAKER_01 51:27

And love it that the Purdue Pharmacy and other drug companies are financing your work after all they did with opioids. Thank you. Thank you. Let's hope so.

SPEAKER_02 51:39

The money hasn't gone, and I don't want the money for the how I want everybody who's doing the work to kind of get that money to be able to bring it forth. So, and that's our hospitals, our agencies, our providers, the RFPs that go out. You know, that's what we're looking to do for sure. How's your daughter doing? I'm glad you asked because I wanted to interject a little about her when you were talking about your daughters. So, um, like maybe your families and not like a lot of families, my kids were best friends. And so there was never a moment where she begrudged him his challenges. You know, she would go to those meetings where they would put him in the middle of the circle and say, look what you're doing in the family. And she'd be like, When are they going to treat him? Like he's felt like this his whole life. Like, this is not his fault. And so she was angry. Um, she ultimately got her master's in social work with minors in college and addiction studies and athletic coaching. She worked in social work for a while. She's now thinking about what her career path is going to be, but she's also a runner. That's what she does for her self-care. So she's kind of big on TikTok and she has a following of like, you know, 30,000 young people who follow her running path and her navigating, you know, life in the city with not using substances. And so it's it's you know, her path and her journey. But you know, it's it never goes away. Harris is front and center and present for us always. You know, his friend group literally are still so close, and I think in large part because he brought them together. You go through people going and graduating from college, and now, you know, some of his friends are getting married, and we have weddings coming up, and you know, we feel that loss every day. For my daughter, you know, she compartmentalizes, she takes him on and off the shelf, but he's always there. You know, she posts about him, she shares about him, and he's very present for her in her life.

SPEAKER_01 53:29

I'm so she's your daughter, she's your daughter.

SPEAKER_03 53:33

Yeah, I'm so glad to hear that. I remember there was a point in our family where we thought we were gonna lose Ben. Um and my daughter said, I don't want to be an only child. And I said, You'll never be an only child. He will always be part of you because you were raised with him. He is a part of your foundation of your life. And uh, you know, he is still here, still a challenge, still here. And every day we get a chance to make some more good memories when everything all the stars are aligned, is a gift, and we know how much of a gift it is. Stephanie, it's been an absolute honor and pleasure. We have many stories here among these three moms. If we can be of any help to you in storytelling, you know, reach out. We're here. Um and you know, we're so happy to have you as our fourth mom tonight, theharrisproject.org. And all those social media links, I believe, are on your website as well.

SPEAKER_02 54:28

Thank you so much for having me. This was great.

SPEAKER_03 54:30

Hey, thanks for joining us for this episode of Schizophrenia Three Moms in the Trenches with Randy Kay, Mindy Gryling, and Miriam Feldman. To get in touch with us or to learn more about our books, please visit our websites at Miriamfeldman.com, mindygrilling.com, or randyk.com.