How to Help New Yorkers Experiencing Psychosis

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Brian Lehrer: Brian Lehrer on WNYC. We've been talking on the show, as most of you know, about Mayor Adams' proposed plan to involuntarily send more people to the hospital who are viewed as experiencing mental illness so bad that they can't meet their basic needs. Just yesterday, some advocates for those living with mental illness went to federal court in an attempt to halt the plan, characterizing it as an unlawful and dangerous policy. Right now, we're going to talk about other approaches to helping people struggling with mental illness that have the potential to be life-altering, specifically among younger New Yorkers, in this case between the ages of 16 and 30 whose lives might go one way or another after an early episode of psychosis.

With me now is Jody Rudin, President and CEO of the Institute for Community Living, which is an organization whose mission is to, "help children, adults and families, New Yorkers of all backgrounds and ages, living with serious mental illness, substance use disorder, and developmental disabilities achieve greater health and independence." She's going to talk about a program that the Institute for Community Living runs called OnTrack, which offers mental health treatment and supportive services for the New Yorkers who need it between the ages of 16 and 30. Also joining us is Ben, someone who has participated in the Institute for Community Living's OnTrack program. Jody and Ben, welcome to WNYC.

Jody Rudin: Thanks for having us, Brian.

Ben: Thank you, thanks for having me.

Brian Lehrer: Ben is going to share their story in a little while. Ben, bear with me while I start with Jody here to introduce the program to our listeners. Jody, I see OnTrack specifically works with New Yorkers between the ages of 16 and 30. That's for a reason. Many people first experience psychosis or other mental health breaks at around that age range, young adulthood, because of all the changes and stressors happening at that time. Can you talk a little bit about that?

Jody Rudin: Yes, absolutely. Brian, as you mentioned, the OnTrack program, which is really a fantastic partnership that the Institute for Community Living has with the state office for mental health, intervenes with people ages between 16 and 30 right after their first episode of psychosis. Why that's so important is because 75% of people who are diagnosed with mental illness have their first symptoms by the age of 24. We think we are intervening early with the right demographic. What happens typically is that there's usually about an 11-year lag between the onset of symptoms and when people seek treatment. Getting in right away is the way to ensure that people have better outcomes across the board.

The sooner you seek treatment, the better off your outcomes are going to be throughout your lives. This is really a special program designed to intervene early and really change the trajectory of people's lives.

Brian Lehrer: Did you say it's an 11-year program?

Jody Rudin: No, OnTrack is not 11 years. There's, on average, an 11-year gap between when people experience their first symptoms of mental illness and when they seek treatment. The OnTrack program is looking to reverse that trend, to intervene immediately upon the first episode of psychosis.

Brian Lehrer: Got it. Listeners, if this resonates with you, either because you or a loved one has struggled with mental illness, we invite you to give us a call. Tell us about what has or hasn't worked when it comes to treatment and recovery and management. Maybe you too have participated in OnTrack. Give us a call at 212-433-WNYC, 212-433-9692 or tweet @BrianLehrer. Maybe something like this can even be part of the program that Mayor Adams refers people into, that the city uses for people identified early enough as being unable to meet their basic needs, whether or not you support the involuntary commitment that's been in the news.

Listeners, 212-433-WNYC, if you have an experience to share or a question to ask. Ben, continue to be patient while I ask Jody to talk about the model of care provided by OnTrack in a little more detail because I see it's not just therapy and medications you're providing, it's really the tools to be able to move forward in life, as you were starting to explain. What does that really mean?

Jody Rudin: Sure, yes. ICL's OnTrack program is designed specifically for young people like Ben who were about to meet. It's an intensive program, it's typically a two-year program. We offer a full range of services. We really take a whole health approach. Of course, we provide traditional treatment and we support people in helping them to access medication, but we're looking holistically at their needs. We're partnering with them on meeting their goals. That can include anything from counselling to employment, education. We have peers on staff, other young people who have lived experience with mental illness.

At the heart of this program, Brian, and the other programs that we operate that I think are particularly successful, is an emphasis on connection, connection between the staff and the people we serve. In a way it's the relationship that becomes part of the treatment. Having people show up for you who you can rely on, who you can build trust with, ends up being part of the healing journey and the healing process.

Brian Lehrer: We're going to take a break and hear Ben's calls. I see a lot of people are calling in. In a world that we say is experiencing an increasing number of mental health crises, it's interesting that so many people are calling in and maybe not surprising that so many people are calling in. We'll hear some folks' stories and questions and suggestions for how to move forward as a society as well as on an individual basis for some of you as we continue. Brian Lehrer on WNYC.

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Brian Lehrer: Brian Lehrer on WNYC. In the context of Mayor Adams' proposed plan to involuntarily send more people to the hospital, people who are viewed as experiencing mental illness show bad they can't meet their basic needs, we're taking a closer look at early experiences that might contribute to leading people into that position, no matter what you think about Adams policy, pro or con. Specifically among younger New Yorkers between the ages of 16 and 30, whose lives might go one way or another after an early episode of psychosis.

Our guests if you're just joining us are Jody Rudin, President and CEO of the Institute for Community Living, which offers mental health treatment and supportive services for New Yorkers between the ages of 16 and 30 to prevent one episode from becoming a lifetime of episodes in their OnTrack program. Also joining us is Ben, someone who's participated in the Institute for Community Living's OnTrack program. Ben, you volunteered to come on the show, so I guess you don't mind telling our listeners a little bit of your story and how you found OnTrack and how the program helped you move forward with your life and pursue your goals.

Ben: Yes, sure. I could tell that story. It all started with me being an accelerator program for radiography. It was a tough set of courses, but I was managing. I also come from an immigrant family, so that pressure was on my back to be successful. The pressure from school, pressure from my parents, pressure of being neurodivergent in a neurotypical world all came down on me every day for a few months. Eventually I started developing psychosis, which is when you lose contact with reality. When I lost contact with reality, it was like my fear started rewriting my reality, and I eventually hit rock bottom. I realized I couldn't heal myself so I needed help.

I reached out to a hotline called NYC Well, I highly recommend it. They put me in touch with a few people. Unfortunately, they weren't a great match for me. I just kept on going with the journey of just looking for someone who would fit my needs and eventually I started paying out of pocket to see a counsellor. That wasn't sustainable financially. I eventually found a video on YouTube talking about a program called OnTrack at Zucker Hillside hospital. The guy's name was Juan, he was a patient. He was just telling his experience, what he went through and I resonated with that. I called them up and they put me in touch with someone named Louis, who was the director of the OnTrack Program at the time and the rest is history. That's how I got in touch with OnTrack.

Brian Lehrer: Jody, do you want to pick up Ben's story from the provider perspective?

Jody Rudin: Sure. We met with Ben, and engaged them, and identified that he would be eligible and appropriate for the services that we offered. The value that we hold in the OnTrack Program is that there's a framework of shared decision making. It's staff and the people we serve like Ben coming together. In this case, we were listening to Ben about their goals, and what they want to achieve in their lives. A plan was crafted in terms of supporting how our staff could support Ben in moving forward. I don't want to step, Ben, on any of your incredible successes. I'm being deliberately vague here because I know we have beared witness in many respects to the ways in which you have transformed your life over these last few years. It's nothing short of inspiring, and I really want you to be able to tell your story.

Ben: When I look back on the where I was and where I am now, it's amazing. It's all because of the people that are OnTrack, [unintelligible 00:11:41] Tom, that's the team behind me. I say team, because they all include me in everything. They make sure that what my goal is, is heard and they set me up to achieve that goal. They're always there for me.

Brian Lehrer: Do you have any advice, Ben, just based on your own personal experience? Obviously, one person's experience is not universally applicable to other people. Beyond, "Hey, check out the OnTrack Program if these services sound like ones you might need," beyond that, specific things that you did.

Techniques, or I know you've been talking very much about the people at OnTrack who were there for you as a support system. Maybe that's the most important thing, having human beings who are your support system. Even beyond that, the idea here as Jody is explaining it is somebody, as a young adult who has an early psychotic episode,, might wind up going down a path of a lifetime of repeated episodes, or might be able to get onto another track where this becomes at least much more rare, or maybe just something that happened to you at an early phase of your adult life. Are there any specific things that you can point to that you think helped get you back OnTrack, that are worth saying out loud?

Ben: Awareness, because a lot of times it's parents who are dealing with the person who is going through something very challenging, like psychosis. Having that awareness, having it out there to educate people and say that this is what's going on with their mind, it's not something you can't understand. It's something that you can just maybe pick up a book or go on YouTube research it. Just get get the information out there, just so everyone can understand that this is something that people go through and this is what the people need to get to a better place.

Brian Lehrer: I don't know if you've listened to Mayor Adams' announcement of the involuntary commitment program but one of the things that he said about why he thinks it's justifiable in some people's cases is that when they're going through a psychotic break they're not aware that they're going through it. They need somebody from the outside in some cases, to actually tell them, "You have to do this." You also were just talking about awareness. Do you relate to that or do you think that that sounds like an excuse for getting people off the streets?

Ben: I think that he might be using something that's truthful to justify something that's not justifiable. I don't know a lot about what's going on but I do know there's already a culture of abuse when it comes to police to give more funding to people who aren't equipped to handle sick people. It just doesn't make sense to me. That's all I have to say about that. I don't know much about it.

Brian Lehrer: Jody, do you want to weigh in on that either? Either on the policy or just this notion, and how you deal with it as a provider, that for many people, when they're in a psychotic break, they don't realize it's a psychotic break. Sometimes they think they're having the healthiest, most revelatory moment of their lives. Dealing with that aspect.

Jody Rudin: Yes, sure. Brian, I'll make a few quick points on Mayor Adams' plan. I think, first, he deserves some credit for focusing on this issue and talking about it and being willing to try new things. I think those are all positive. I'll say as a leader of a Health and Human Services nonprofit in the city, he's visited multiple ICL programs over the course of the last year. That's been inspiring for our staff and for the people we serve. Again, really appreciate his engagement and also appreciate the governor's engagement and her team and our partners at the State Office of Mental Health.

I say all of this to make the point that I think we have a real moment here to capitalize on all of the attention on this issue. From my perspective, and from more broadly the Institute of Community Living's perspective, I think the real solution is investing in community based trauma informed services that we know to work. ICL operates about 100 different programs across 50 locations. There are a small handful of programs that I think rise to the top of the list of being uniquely person centered and evidence based, and that have real track records in helping people who have severe mental illness transform their lives.

OnTrack is one of those programs. Assertive Community Treatment, Intensive Mobile Treatment are other programs, and these are programs where we have multidisciplinary teams going out and working with people wherever they are, on whatever their goals are. If we visit someone and they're hungry, we're going to take them to lunch. If they don't have shoes, we're going to go buy them sneakers. Of course, we're going to do more formal mental health treatment, but we're going to look at their needs holistically, meet them where they are, and help them, partner with them to get their needs met.

In these programs, we see hospitalizations decreased by 30% when people receive these services, and when these services are paired with housing, hospitalizations decrease by 80%. I think on the question, just briefly on involuntary hospitalizations, I spent a good chunk of my career at the City Department of Homeless Services, I was there for about 15 years. I oversaw the single adults shelter system, and the provision of services for people sleeping on the streets and that universe was about 15,000 clients on any given night. There was a handful of people who kept us up at night. A handful, well under 1% of the overall population, who we were worried about from the perspective of harm to themselves or others.

For that small group, having a process that works of getting them hospitalized is really important and that process is broken right now. If we're going to look at this, I would say, listen, I hold the value that people should be in the least restrictive setting where they can thrive, and that they should have a lot of choice about the care they receive and how they receive it. If we have an emergency situation where somebody is really a danger to themselves or others, the process of getting them hospitalized should work. It's currently broken so there should be some focus on this.

The way to solve it is to do it in partnership with the existing clinical infrastructure in the city, with the care team that's already working with that client, with the clinician who's been working with the individual over the course of years, not create a separate shadow system that's fragmented. I think, if we're looking at this, there's value in that but, again, it needs to be integrated with the current system of care.

Brian Lehrer: This is WNYC FMHD and AM New York. WNJTFM 68.1, Trenton. WNJP 88.5, Sussex. WNJY 89.3, Netcong and WNJO 90.3, Toms River. We are New York and New Jersey public radio and live streaming at wnyc.org. Few more minutes with Jody Rudin, President and CEO of the Institute for Community Living in the context of Mayor Adams' new involuntary commitment program, talking about the institute's OnTrack program, which helps particularly young adults, New Yorkers between the ages of 16 and 30, who have an initial psychotic episode and whose lives might go one way or another after an early episode. They try to help them stay on track and not be doomed to a lifetime of one after another after another. May in Edgewater, you're on WNYC. Hi, May.

May: Hi. How are you, Lehrer? I just wanted to bring in a perspective that I think is lacking, which is that of the caregivers, in the case the parents, and the people who are not actually needing government support who have private insurance, everything. The system is still broken and still not able to provide solutions for these people. Just very briefly, my daughter suffered since she was 14. We took her to one of the supposedly best adolescent therapists in New York City, and he completely just pushed our fears aside as parents. Somehow parents seemed to be never believed, and then it continued, of course.

Now she's 24, and now legally I can't ask anybody or force her to go to a program, but she's actually not living. She stopped going to college. She doesn't get out of her room. She's aware of all this, but she has a fear of going into a program. My hands are tied, but if something bad happens, I'll be the first to be blamed. Two, I'm the caregiver. I have to deal with her being dysfunctional in life. I think that has to be addressed. It doesn't have to be either black or white. It has to be also with the caregiver.

Brian Lehrer: What do you need? What would help you?

May: What would help me is that if I can let her therapist say that yes, she has been stuck in this nonfunctional part of life, then it's not an optional for the insurance to cover her program. Two, I get a say in saying, "You have to go to a program" because a sick mind can't take a decision for itself. If I want to help her to be able to live afterwards and be productive, then there are parts where we have to say, "This person who's not in the best mental health situation is not the only one who decides whether or not they go to the program."

Brian Lehrer: Jody, would you talk to May for a minute? Do you have any advice either at the relationship level or the policy level that's not so much advice for a person at a policy level for an individual, but maybe at the insurance level because you heard that plea?

Jody Rudin: Yes. May, I'm listening with empathy and compassion, and I'm sorry that your family is going through this. I'm thinking about a program that ICL operates. Part of our whole health approach is to treat not just the individuals in a family but the whole family, and to provide support for caregivers. May, to the extent that it's helpful for you and Brian, for all of your listeners, I want to give ICL's centralized number where people can access care and services. That number is 1-844-ICL-HOPE. Listen. We have failed as a society to live the promise following deinstitutionalization a half a century ago to build robust community-based mental health services for everyone, irrespective of level of need, irrespective of ability to pay.

Again, I feel motivated based on the attention on this issue to seize this as an opportunity to build out this continuum for everyone who needs support, May, including you and your daughter.

May: Thank you so much.

Brian Lehrer: Thank you very much. I hope that's helpful. I should say that we have several other callers on the board who we're not going to have time to get to, but who are also talking about the insurance aspect of this, that so much insurance of various kinds does not cover the kind of mental health treatment that they feel like they need or that a loved one needs. That certainly is a systemic and structural failure and something that should be part of the conversation and is. Christina in Bedford, you're on WNYC. Hi, Christina.

Christina: I don't know if that's me. I'm actually in Binghamton, New York.

Brian Lehrer: You're in Binghamton. I'm sorry. I think we misheard that, but yes, it's you.

Christina: I'm an avid listener and never called in before. I wanted to mention, as one of your callers did mention, he said NYC Well. I had an occasion that a young friend of mine in New York City was having a mental crisis. She called me on the phone and from Binghamton, I just looked up on my computer, found NYC Well, called them. They came to her house in Manhattan within an hour and helped her out through a crisis, and then followed up for at least three weeks to a month afterwards with weekly calls, also visits for her, and pointed her in the right direction. They were absolutely marvelous.

Brian Lehrer: One for NYC Well. That's good for people to know and be reminded one more time of that resource. As we run out of time, Jody, would you remind people one more time of how to get in touch with your program if people feel after listening to this that they might want to do that?

Jody Rudin: Absolutely, Brian. The number is 1-844-ICL-HOPE.

Brian Lehrer: Ben, you want to give any last words of encouragement to people who might find themselves in a position similar to the one that you were in?

Ben: Yes. I would just say to keep going, keep looking for help. Sometimes you can't do everything by yourself, even though that's what you're telling yourself, but you just go to find help.

Brian Lehrer: Jody Rudin, President and CEO of the Institute for Community Living. Ben, who's been one of their clients. Thank you so much, both of you for joining us. I think this has been a really important conversation and hopefully helpful to people going beyond just is Mayor Adams right or wrong on this particular policy, but really looking at some people's life stories and how they may be affected by that policy, but beyond that how they keep their lives on track as much as possible. Thank you very much.

Jody Rudin: Thank you for continuing to shine a light on this critical issue, Brian, and thank you, Ben.

 

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