Independent Perspective In-Depth #8

Guest:  Harvey Rosenthal

Topic:  New York Association of Psychiatric Rehabilitation Services

Duration:  26:30

Published:  April 1, 2021

Host:  Welcome to Independent Perspective In-Depth, a program presented in the public interest by the Western New York Independent Living (WNYIL) family of agencies, courtesy of the Niagara Frontier Radio Reading Service (NFRRS). Using this long format, we’ll be exploring the broader issues affecting the community of people with disabilities in discussions with knowledgeable individuals from a variety of organizations and backgrounds. I'm your host Jillian Moss Smith, and we're going to be doing things a little different today. I am here with Maura Kelley, the Director of Mental Health PEER Connection (MHPC) at WNYIL. We're excited to welcome as our guest Harvey Rosenthal, the Chief Executive Officer of New York Association of Psychiatric Rehabilitation Services (NYAPRS). Welcome to the program Harvey.

Guest:  Thank you. Glad to be here, nice to be here with Maura.

Host:  Definitely. I'm going to pass this conversation over to Maura to get us started. Maura.

Hi Harvey, it’s great to see you.

Guest:  You too Maura.

Host:  We have really good, we have history together.

Guest:  A long good history. I've always appreciated our friendship and your work, and it should be said from the beginning that Maura is a former President of NYAPRS, a board chair so we go back a very long way.

Host:  Yes. And the number one question always for Harvey is, what's the current legislative issue? What are we fighting? I know the budget just passed. What's going on?

Guest:  I think we had, Maura, a so-so session, I think there was some really good things. But some things that were really were disappointing. On the funding side, we did see a 5% cut that we were threatened with in the community was taken down by the legislation by the governor's office actually and legislature put out a 1% COLA, which is the first one we've had in nine years. They did close some hospital beds, reinvestment beds, and for the first time in years, we're not seeing that money, it's been taken. So that's a money point of view. I think we're excited about some of the things in criminal justice reform, we're seeing, crisis stabilization centers coming up. We saw the Halt Bill pass which is a landmark bill that will require treatment and not torture for so many people and ban the use of solitary for our people. We see self-directed care of the pilot is advancing and we fought off once again for 20 years, we fought off expansions in forced treatment.

Host:  That’s great. Those issues you brought up are greatly concerned for our brothers and sisters in Western New York, as well as the state. I heard the reinvestment beds; they were cutting 200 but 100 were already not filled. So, that's a lot of money still.

Guest:  Yes, each hospital bed they close it is worth $110,000 and if there were 200 being close we should have seen, we should be seeing 22 million, but the legislature has really, and the governor have agreed to take them, to withhold that money from us.

Host:  Yes. So, Harvey, I asked you these questions, because I know a little bit about you. So, is there any way, can you explain or, tell us about your history in this movement, where you got started and where you are today?

Guest:  I'd be happy to do that Maura. So, I grew up in New York City. And as I learned early in my childhood my parents had severe anxiety and depression, and I thought even then one day it was sort of fall on me. And in the 60s, where everybody was letting it all hang out, that was not a good thing for me to do, because what I found when I let it hang out was that I had severe depression. I wound up in a mental hospital for six weeks which changed my life. And eventually, I really struggled and I really, I used to say had no filter, I had no skin, everything just really overwhelmed me. And my response was to get very depressed very quickly and for a long period of time. Working recovery and before we called it recovery, before recovery. But I drove my way up to Albany and was working eventually in the Psych Center. And I wanted to work there because I just felt, having been through hospitalization and knowing what people should be getting, and feeling particularly strong about that for young people, the state hospital to see what I could do and that's how I got to see how, not surprisingly, how horrible our system was. We told people they'd never work and never recover and couldn't make decisions and  we'd be poor, on disability and be isolated and have a mental health ghetto if you will, and have no hope, no support  of a real personal sort of nature. So I saw why that was needed. I then eventually, I worked in an outpatient clinic. And the most important thing there is that they saw that when people weren't responding to what they were being given, yhey were the ones being blamed as not complaint. And then there was the policy to force people, the same treatment they had rejected for good reasons, often. So, I saw that happening and then I was the director of a clubhouse, club rehabilitation program. And from there began to see a partnership in action between people in recovery and recovery focused providers. And so, it has gone from just a clubhouse association which is a day program for the most part, to a rehab and recovery movement. And so, I just say one more thing about what I saw. I saw the beginning I saw the medical model. But over time I saw through my efforts and others work I saw Labor's movements; I saw the Civil Rights Movement. I saw the impact of the consumer survivor ex patient movement which was very much against the injustices of psychiatry over medication, disempowerment and nationhood. I saw the independent living movement come in. I saw recovery began to be talked about. I saw Psychiatric Rehabilitation and the idea that people could form goals it sounds very obvious now but back then, that people could form goals and identify skills and supports, so that movement would commend Community Inclusion which means everybody gets to live and work as independently as they so choose. I saw peer support really rise up and become a transformational force, and very much involved in the social, racial and criminal justice movement. So, my office has sort of been I've had the privilege, particularly at NYAPRS to watch one of these movements come together and create something new.

Host:  Being part of that for the last 25 years, not only do I see NYAPRS be a member of that but a leader of that. And I remember the forced treatment, and Andrew Goldstein and Kendra Websdale and the insurance parody and the pizza that piece of pizza. Like NYAPRS did that like we had the T shirts and, you know in Buffalo, we were protesting or expressing ourselves and, you know, the, we're at the Attorney General's office and I think that I, I know NYAPRS organized that. And we're, I'm forever grateful. I save a lot of money on my insurance because of that, you know, and so in fourth treatment, it's still an issue.

Guest:  It's an issue I just want to back up a little bit and just say something in reaction what you just said. NYAPRS was, you know, a clubhouse association we began realizing we needed to do more. And the first opportunity we had was when the advocates wanted to close state hospitals. We invested and moved money into the community. And after that time, there was no voice of the people themselves at the table on the steps of the Capitol in front of the microphone, no TV. So I will always be proud to have seen that happen where people now it’s a forced treatment or Medicaid policy or criminal justice I think we helped bring people directly forward to be able to take power speak out change practice. And I'll always remember really that the reinvestment, because when Governor Mario Cuomo signed the bill. He didn't want to, and he said it was those people that wouldn't leave the capital. That made me sign it and those people were NYAPRS.

Host:  Right. And I think I'm one of the people that benefited from the reinvestment bill. So, I'm thinking, all these years they've been paying for me in my salary, because of the reinvestment bill, because of that, and it worked.

Guest:  So I think by now, if you think about it for every bed that closed since 1993 and every dollar each year that would have been spent on that bed is now in the community, we're talking about hundreds of millions of dollars that gave birth to the recovery and peer support and we have funded them.

Host:  Yes, that is true. So, we talked about forced reinvestment parody, is the mental health system or behavioral health, now called better off today with so many programs and so many supports quote unquote, then 20-25 years ago?

Guest:  There's a lot of improvement since then a lot of things that are structurally in the way of full lives, full choice for recovery. I think we've come a long way. I remember when I used to do regional forums and people were so busy smoking, having trouble paying attention, it was like they were coming and going in the room, people are really attentive, they're a strong force they're aware, they organize it's much more about local organization now. And I think people programs are more sophisticated particularly peer programs have become the center of a system on so many levels from emergency rooms to crisis stabilization to housing to employment. We're one of the only states I know of who has vacancies because we have more peer jobs and we have peers. So, I think that's phenomenal. I think I certainly think we've made a lot of advances in, we're focused on Social Determinants, not medicine and doctors and pills as, as much as looking holistically while that's okay. But we want to help the whole person. I think we made progress, I think, there will always be the subtle discrimination and bias and dominion ration of people when someone is the patient, and someone is the staff. When the funding is more symptom based and medical based that's always going to be a challenge until we do something about that. I mean I think we've covered ways. I think that no matter what we do, Maura it  is ultimately all about choice, hope, support, and whatever you call, whatever program you have whatever model, it's about the relationship that we form with each other. And if those relationships are allowed to be, we’ll be alright.

Host:  So, what has NYAPRS members changed in the population they serve?

Guest:  Yeah, like I said, I think that people are so strong and aware, informed. I used to go and wind up explaining a lot of policy to people and encouraging people to take certain actions and people don’t need that as much, people know they're aware they keep up with things. They take great responsibility for their recovery are very assertive and active about it, not everybody but that's a big change in our community. We're also looking holistically we're looking at alternatives, we see the whole person. And I think that's a huge change from your patient, you have a diagnosis, you'll never get well, it's all about the medicine committee where we're going to be making decisions for. It's a big, big change for them.

Host:  And you said it's not it, now it left me. Oh, what do you know, Harvey, the death rate amongst people with mental illness? Today, versus when it was really bad?

Guest:  I know maybe a decade ago, they published a study that said, people with mental health diagnoses died 25 years earlier, than the general public, and a lot of that was as much the wages of being idle, isolated, poor diet, smoking, you know, cancer, heart disease, as much as it was mental health although the medications really cause some of these problems. And I think, as they've gotten better with prescribing, or people are not, don’t misuse their medicines, which are better health wise. Yeah, we've come a ways for that but still we have way too many people who have way too many sort of medical conditions certainly so that somebody told me about 62% of the admissions for our people are for medical reasons that really you know, impacts back to their physical health, obviously.

Host:  But what can we at MHPC but more the Western New York area, do to support what NYAPRS is doing?

Guest:  I think Western New York actually is kind of a hotbed of the recovery movement within NYAPRS we have very strong agencies very aggressive peer run agencies. I think the new Senate Mental Health Committee Chair, Samra Brouk is going to be a real leader there she really emerged in this session, she's in Rochester which is why I bring it up. So she's really focused on things I think we need to focus on which is criminal justice reform, which means, can you send someone else out rather than the police to respond to a person in crisis, and where can you go for people that's different than a hospital emergency room, I think there's going to be a lot of focus on that, and I think the Senator is going to be really an important role in that, but I see a lot of that you have programs in Buffalo that are on the cutting edge of peer support rehabilitation, particularly around crisis, crisis stabilization peer respite. You know the Living Room Program you have a lot of very progressive programs.

Host:  Have you heard of the Bolo Wrap?

Guest:  Yes, I think I know I think I heard about it in relation to Buffalo, actually.

Host:  They use it the first time, to a transgender woman that was freezing cold outside with scissors. and it's been hard to get support with that but, basically, is it the way the hog tie animals and shove them in the car or in the hospital. So, I don't know if that's come on your map or not.

Guest:  I think I heard about increasingly injustices abuses of sorts of these kinds are really in the light of day and are being challenged. They were really looking at alternative ways to frame crisis and distress, to respond to people, to send different people out to offer people, safe place, a place to, sort of get re-grounded, we're not just focused on, emergency room hospitals and jails. We're focused on the whole person. And I think that's why we were not focused on restraints I think restraints are going to be looked at every time that they're used as to whether they need to be used at all let alone that one and that's horrific to hear about.

Host:  What do you think NYAPRS biggest impact has been in its existence?

Guest:  I would say rights, I think we've really made it clear like People's Choice. That wherever possible, I mean it's not perfect, but I think people expect. Let me put it this way if people were going to try to launch a program, we would expect NYAPRS to stop that. If people were going to expand the knowledge of peer support, I think they would know that NYAPRS would be there to support that.

Host:  I believe that I believe people are in tough situations, in a corner, they know NYAPRS got their back, yeah I really I see that even across the state.

Guest:  It means a lot Maura. I did have something I wanted to tell you, actually about a couple of things if it's okay. There are two models I want to discuss. One of them is called self-directed care and I think it's the most progressive approach we have and we work, we only have it in the mental health with two small pilots Monroe Independent Living Center and Hudson Valley independent living in America the access to New York City. What it does is a lot supports people to make strategic purchases for the things that really need to go and recovering. So you could be in a day program talking about employment, and you could be there for years getting ready to get ready to go back to work, or it turns out if what you need is to get your car fixed or get a bus pass, get some clothes for a job interview, try alternative treatment have a computer and a modem, things like that. Those are the real-life things. But for a relatively small amount of money will save us millions and avoidable hospitalization, so it's a win-win for the budget and for our policy but for a person. It gives them the real tools to move ahead real practical things we've seen a lot of progress in that. The other program is called INSET, and it's an alternative to first treatment. First, outpatient treatment which is under was launched under Kendra’s Law, under the belief that people rejected treatment because they lacked insight or they had brain damage or something of that kind, and that it was necessary to get a judge involved to force people to accept outpatient treatment, often medication. And we've always fought that from 2000 the year 2000 when it began. And we've succeeded successfully sort of kept it out, but I think that INSET is a really exciting answer to what do you offer people. I was asked once okay you don’t like forced treatment, what do you like. And I answered basically sends out peers, to do the outreach and engagement is INSET stands for a one point in really intensive sustained support. And so in Westchester County where we've helped evolve the program they have an 80% engagement rate 80% of a group that was supposed to be unable or unwilling to accept any form of support so that's our answer to, first outpatient treatment its often in our mind about system failure and INSET is a way to show how it can work.

Host:  Was that started, you were sending out peers to help homeless individuals?

Guest:  Yeah, actually, we've been doing some work in Queens, and what we had was some peer bridges out in the community and they were hooked up with a managed care funded nurse and case manager. And so, we took them they were successful, so we took that model in Westchester. And again, the peers, lead the model but you do have, case management, if you needed in medical care, but the main thing is the peer support in the relationship.

Host:  Okay. Harvey its great talking to you. If you were here, I'd take you out to lunch.

Guest:  Okay, don't move, I’ll get in the car right now,

Host:  Harvey just in case anybody wants to reach out to you or your organization if they have any more questions. Could you point us in the right direction?

Guest:  If you want to see a variety of, you know the webinars and events we have in the news we publish services we offer you can go to our website, and if you want to contact me it's Now, Maura, I’ve got breaking news for you. And you're the first to know and this may not be a big deal to others, but it is to us we are changing our name, because we're rebranding and we're changing it to the Alliance for Rights in Recovery.

Host:  It’s national, big news, congratulations!

Guest:  National, that’s right, we're excited about it.

Host:  Well awesome thank you so much Harvey for being here today. We really appreciate your time.

Guest:  Thank you for having me.

Host:  You've been listening to Independent Perspective In-Depth, a program presented in the public interest by the WNYIL family of agencies, courtesy of the NFRRS. Our guest has been Harvey Rosenthal, Chief Executive Officer of the NYAPRS. This program features the song A Little Ditty on the Dance Floor by Jay Lang available under a Creative Commons Attribution, noncommercial license. I'm your host Jillian Moss Smith, accompanied by the Director of MHPC, Maura Kelley. If you wish to hear this program again, a couple days after the on air broadcast, you can find a podcast on the NFRRS web page, on the Programming tab under Bonus Programs, and also on under Public Relations/Podcasts. Have a good week, and be safe.