On today’s episode, we follow a group of mental health advocates campaigning for change. Recently, WBFO Disability Reporter Emyle Watkins went on the road to cover a group of advocates as they made their way from Buffalo to Albany to challenge topics such as involuntary treatment, Kendra’s Law, and more. She sat down with various members of the group as they traveled, to get their thoughts on why they made the trip, and their outlook on certain issues important to the mental health community.
TRANSCRIPT
This is a rush transcript provided by a contractor and may be updated over time to be more accurate.
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Emyle Watkins: Hello and welcome to 'What's Next?' I'm Disability Reporter, Emyle Watkins. Earlier this month, I embedded myself with a group of mental health advocates from Buffalo. They went to Albany and back in the same day to voice their support for voluntary peer-led services in the state budget. Today on 'What's Next?', I'll take you through some of the conversations I had that day.
After a five-hour ride to Albany, our bus reached the Capitol complex at 8:00 AM. I wanted to talk with Mike Seitz, the bus captain first, to hear his thoughts on the day ahead.
Emyle Watkins (On tape): Okay, Mike, we just got to Albany. Tell me a little bit about how everyone's feeling, how you're feeling.
Mike Seitz: I think everybody's feeling a little tired, but optimistic, excited. I mean, this is what we do. We talk about access to opportunity when we're talking about mental health recovery, right? And that includes acclimating to life, making sure that we know that we have voices and our voices can be heard. Making sure we know that what we need matters, so I'm psyched.
Emyle Watkins: How was the ride? Did everyone sleep? Is everyone hydrated?
Mike Seitz: There was a lot of sleeping until... There was a very definitive moment. There was a lot of sleeping until there wasn't. It was very quiet. And then I heard my name several times and I said, I feel like a little kid, "Okay, it's time to get up. Everybody get up."
Emyle Watkins: Awesome.
Mike Seitz: Bus ride was great, yeah.
Emyle Watkins: The group then made their way through the underground mall-like tunnels that connect all the government buildings. The day started with breakfast in The Egg, which is a performing arts venue in the complex. It's here that Rita Lorenz sat down with me to share why she came.
Emyle Watkins: What brought you out here today?
Rita Lorenz: I wanted to come check this out and see if it's something I want to continue to do to try to help.
Emyle Watkins: And what is it you're doing today? How would you describe it?
Rita Lorenz: You know, it's hard for me to describe. I'm not very good at describing anything.
Emyle Watkins: You're just in for the ride?
Rita Lorenz: Yeah, to see. And then if I like it, I'm going to try to come back out again next year.
Emyle Watkins: What was it like waking up at 2, 3 in the morning?
Rita Lorenz: I was actually up all night.
Emyle Watkins: Oh, you pulled an all-nighter!
Rita Lorenz: Drinking Red Bull and a pop.
Emyle Watkins: Oh, my gosh. You have a lot of energy for someone who didn't sleep.
Rita Lorenz: I slept on the bus the whole way.
Emyle Watkins: Oh, nice. Nice. Oh, my gosh.
Rita Lorenz: Well, she'll tell you I always got a lot of energy.
Emyle Watkins: Yeah. And I know today we're going to... The goal is to talk about mental health support and resources and policy that can help people. What are you most looking forward to learning about or sharing with legislators?
Rita Lorenz: Probably about what I've gone through with my mental health to hope that we can get more grants for more mental health places to get more stuff going because we need it.
Emyle Watkins: Yeah. What are some of the things you would say that Western New York needs?
Rita Lorenz: They need a lot. Shelters for the homeless, more places for mental health to go to because some people aren't ready to get the help they need. And we've only got maybe one or two drop-in centers in New York, in Buffalo. We need more for that.
Emyle Watkins: Yeah, absolutely. And if you get a chance to talk with a legislator today, what would you want them to know about people living with mental health conditions?
Rita Lorenz: I'd tell them it's very tough on us, especially when you're trying to get social security. It's hard. They've been denying me for years, since I was 16, and I'm still fighting them to this day to get it. It's hard for us people with mental health because we just want to give up sometimes and we need people that are going to support us and be there for us to keep us going and not give up on us.
Emyle Watkins: I'm glad you didn't give up on yourself.
Rita Lorenz: I'm proud of myself for that, too.
Emyle Watkins: Can I ask, was there something in your journey that really made a difference in your recovery or where you're at now?
Rita Lorenz: I think it would have to be my mom and my fiance. They've both been very supportive. My mom passed away in '19. It's been rough without her. And then when I got back with my fiance, we've been together almost three years now. He's been so supportive, including with my mom being gone.
Emyle Watkins: I'm sorry for your loss.
Emyle Watkins: At that point. I shut off my recorder, and we agreed we'd talk more later.
The group then made their way to the Capitol building for a press conference. Luke Sikinyi, the public policy director for the Alliance for Rights and Recovery shared more about the planning behind the day.
Emyle Watkins: So, tell me how your morning's going so far.
Luke Sikinyi: Morning's good. The thing about this event for us is everybody else is up at 2:00 AM, 1:00 AM, 3:00 AM 4:00 AM, so for me, I get to get up to make sure everyone's on the buses, so I'm kind of up with them at the same time.
But it's always good to hear how people are so excited to get up here. I think the fact that folks from Buffalo are up at 1:00 AM trying to get on a bus by 3:00 AM just tells you how important it is to everyone about this and how exciting the day can be.
Emyle Watkins: Were you in Albany this morning?
Luke Sikinyi: Yes, I was in Albany, got up bright and early. Luckily, I didn't have to travel as much as all these other folks, but try to keep it as exciting for folks when they get here. We want to make sure that we can greet them, they see that welcoming face, and know exactly what's going on as we start the day.
Emyle Watkins: And can you talk about what we're walking to right now?
Luke Sikinyi: Yeah. So we're going to be walking to a press conference on involuntary treatment. We're pushing as the Alliance and our fellow advocates for alternatives to involuntary treatment, including peer-based services, recovery services in general, as well as more person-centered community-based care that doesn't utilize coercion or involuntary treatment methods.
So, we have a number of those that we need to call for. And as we see the legislature begin to question the initiatives that the governor has put forth, we really want to make sure that we get our voice out there, that we are represented well, and this press conference is one way to do so. We'll be having our legislative champions, including Senator Samra Brouk, Assemblymember Chandler-Waterman, as well as Assembly Mental Health Committee Chair, Jo Ann Simon speaking with us along with a number of effective advocates and mental health providers and folks who utilize mental health services.
So, we're really excited for this. It's one way that we get our word out and try to get folks to take some press of the event and then follow that up with the actual meetings of the day.
Emyle Watkins: And why is it so important to have people living with mental health conditions at the forefront of today, going to legislators, being in front of the press?
Luke Sikinyi: I think historically speaking, folks with mental health challenges don't have the opportunity to speak out and be heard about these kinds of issues. So often decisions are being made about them without any input. One of the things that the Alliance has consistently done since our creation has been to try to get opportunities to have that voice be heard and to make sure that those folks are able to specifically state this directly to legislators, to news outlets, to everyone here in Albany because they often don't get that opportunity.
Emyle Watkins: Thank you.
Emyle Watkins: As advocates stood in the long line to go through security for the Capitol building, Kwadjo, another member of the Buffalo Group explained the day was also an important time for advocates to share resources.
Emyle Watkins: And why did you decide to join this trip today?
Kwadjo: I joined this trip last year. I felt that it was very informative. It was a lot of people that came together, a lot of agencies that came out, showed and supported one another. I just thought to come back a second time to see what type of information I can grab and what type of people I can communicate and network with and see where it goes from there.
Emyle Watkins: And why were you motivated to wake up at two in the morning to go on this trip to talk about mental health? Why is that an issue that matters to you?
Kwadjo: Well, I have a couple of mental healths [conditions], but it's always good to see another person going through it so that way we can uplift each other. I feel like coming to this big gathering, it's all different types of stories that you'll hear, all different backgrounds, but at the end of the day is how we made it to the other end or how we got past our little bump in the road or as you would say.
But other than that, like I said, coming here just learning that there's so many resources here that I didn't even know back home or couldn't find that at my local raft building or place where I get my food stamps or stuff like that. But it is real happy. I can't tell you how much happy I am just to see people here acknowledging and trying to work towards a solution and I think that's pretty dope.
Emyle Watkins: And you're waiting in line to join a press conference in the Capitol. What is that like? What are you feeling in this moment? Are you excited to get in front of the news and talk about this issue?
Kwadjo: No, not really. I'm just here to see what's on everybody's mind and the point of view. I mean, like I have my own point of views, even watching the news just to see where we are going as a society. I feel like as I come here I can see like... I hate to say do we still have like sympathy for one another or even like for the people that's homeless out on the streets that they suffer from mental illness or whatever they go through, what are we doing to help these type of people?
I do hear that it will be programs cut in the government budget and stuff like that. I hope not. But everybody wish for the best.
Emyle Watkins: Absolutely. And are there any certain programs that you're really interested in learning about or advocating for today?
Kwadjo: Mental health awareness, of course. Also, looking forward to see if the nurses show up. I also want to talk to them about a few classes that I want to take myself. And other than that, just to see, go around and see who's actually here.
Emyle Watkins: Yeah. Are you interested in going into nursing?
Kwadjo: Yes. I want to take my LPN classes. After my LPN, I want to get into radiologist and see. If I didn't like those two, then that's all I really wanted out of nursing.
Emyle Watkins: Are you hoping to work in the mental health field?
Kwadjo: Later on, yes. Yes, I am.
Emyle Watkins: While on the federal level, cuts have been the main discussion. In New York, the debate is more focused on how to distribute the money where it's going to be the most helpful.
At the press conference, a major focus was asking the governor not to increase funding to involuntary treatment, but instead allocate that funding to voluntary and peer-led services. Currently, Governor Kathy Hochul and the legislature seem at odds over expanding involuntary commitment. While Hochul proposed expansion, the legislature has submitted that from their proposed budget.
And another aspect of involuntary treatment Hochul has sought to expand is Kendra's Law, which is also called Assisted Outpatient Treatment or AOT. It's essentially court-ordered mental health treatment. Kendra's Law isn't permanent and will be up for review in 2027. It's another major concern for advocates including Carla Rabinowitz who spoke during the press conference about her experience with both AOT and peer-led services.
Carla started reading her story, which you'll hear, and then another advocate read her story again for clarity.
Carla Rabinowitz: I want to tell my story. I'm Carla Rabinowitz. I want to tell my story about AOT.
Luke Sikinyi: Can I read this for you?
Carla Rabinowitz: Yes, yes.
Luke Sikinyi: Okay. Thank you, Carla. I'm going to read for her really quickly. Carla, do you want to stay here with me for a moment?
Luke Sikinyi (Reading Carla's testimony): I'm Carla Rabinowitz. I want to tell my story about AOT. From 1996 to 2001, I got progressively sicker. I went in and out of hospitals and was all but lost to myself. I was screaming on the street, I was walking the city streets at 3:00 AM, very unlike me. I described this time as my werewolf form London time. I was unrecognizable to myself. At one time, I was screaming so hard and so often I bought a boxer's mouthpiece to stop myself from screaming. It didn't work. I just spit out the mouthpiece and continued screaming.
I lost my law license due to my severe mental illness. I went in front of a judge and they said AOT. I was in AOT for a year. I was in hospitals many times. It sucked. I did not like it. AOT separated me from life outside. Community Access hired me and saved my life. I started working at Community Access as part of the peer program, counseling people experiencing mental health issues after 9/11. Community Access is a place of healing. In my 20 years working at Community Access, peers helped me a lot. I got support from peers and they helped me find a home, live independently in a co-op, accumulate some money and save for retirement and find myself again. I felt motivated to see a psychiatrist and I was finally rewarded my law license back after lots of hard work.
Emyle Watkins: The same day these advocates were in Albany, Politico posted a new story about assisted outpatient treatment. It cited two reports, including one published by the New York Lawyers for the Public Interest about how people of color have disproportionately been impacted by Kendra's Law. To quote part of that report, NYLPI states:
"The state's own data indicate that 38% of current involuntary outpatient commitment orders involve Black individuals despite the fact that black individuals only make up 17.7% of the population, 26% of the orders involve Hispanic individuals who only make up 19.8% of the population, while 31% of the orders involve White people. Although White individuals make up 54% of the population. These disparities have existed for at least the past 20 years."
The report also cites studies which question the efficacy of involuntary treatment compared to voluntary treatment. I caught up with Ruth Lowenkron, one of the co-authors of the report, and NYLPI's Director of the Disability Justice Program. She's invested in ending involuntary treatment.
Emyle Watkins: And tell me a little bit about the group you're here representing.
Ruth Lowenkron: Sure. I'm with the Disability Justice Program at New York Lawyers for the Public Interest. That's my employer. And we are an advocacy organization, public interest law office. We have three major areas of concentration and one of them is in disability justice, and I'm the director of that program.
Emyle Watkins: Are you an attorney yourself?
Ruth Lowenkron: I am.
Emyle Watkins: And how did you get into disability justice work?
Ruth Lowenkron: Well, I'd like to say a few parts, serendipity, and a few parts, it made a whole lot of sense to me. When I was graduating college and looking for an appropriate nonprofit to work in, I went to one called Untapped Resources. And I'd like to say I had no idea what it was, but they were interested in me, so I ran there and it turned out it was disability and I've been doing it ever since.
But a little closer to the truth is the fact that my father had a physical disability and my sister had a mental disability, has, she's still alive, thank goodness, a mental disability. And so I was really very close to disability issues and I was really a disability advocate from a very young age. And so it all clicked.
I also like to say that I have other passions in my life, and there were many times when I was thinking about switching jobs, should I get into another area? And I would always say, "Well, no, not this time." The Americans With Disabilities Act just went into effect. Couldn't change now. And then ultimately, I've been doing this work for 40 years, so it is my passion.
Emyle Watkins: That's incredible. And I also grew up with family members with disabilities, so I understand where you're coming from. Can you tell me a little bit about why specifically, you spoke out on involuntary commitment, voluntary services, peer-led services today. Why are those so important?
Ruth Lowenkron: Sure. Again, a piece of it comes from my own background. When my sister was voluntarily committed into a hospital in Connecticut and I went there to visit her, that really... I mean, I'd already been very active in the space, but seeing it firsthand, that really pushed me to be the loud voice that I am, the real deprivation of rights in that context. And again, she was there voluntarily, but to think that somebody would end up in circumstances where they have lost all of their independence, their rights to choose what kind of medication, to choose when to go to bed, to choose what to eat, any of those things taken away, something very wrong with that.
And of course, over the years, I've done a lot of reading in the space and it just simply is not the answer. We want to ensure that people choose the areas of treatment that they avail themselves of, choose the kind of social services that they need. We have to offer it as a society, but then we have to make it available by choice. And the idea that we would force somebody into a space, which so often is so degrading, it's wrongheaded. And what we know is that people who are committed over objection are more likely to be treatment-resistant. That stands to reason, right? If someone tells you you must do this and you end up having to do it over objection, chances are quite good that you're not going to like what was happening to you and not want to repeat that again.
And so you're going to stay undercover and not really allow yourself to get whatever minimal services are available in a commitment kind of a circumstance. So it's from, I guess, my experiences, but also from reading what the professionals have to say.
Emyle Watkins: I know that's something I've heard over and over again from people who are pushing for Kendra's Law, who are pushing for involuntary commitment, they claim that people with serious mental illness are not able to make those decisions for themselves.
Emyle Watkins: How would you respond to that? I know today you're going to legislative visits. If a legislator says that to you, what's the response?
Ruth Lowenkron: I think the response is that, first of all, that's not true. The vast majority of people with mental disabilities have issues that they need assistance with, but they haven't lost their minds. They haven't lost their ability to make choices and they shouldn't be deprived of that ability. Now, there are people who are doing things. I mean, we've heard this morning, you weren't there, but at the press conference-
Emyle Watkins: Oh, I was at the-
Ruth Lowenkron: Oh, you were at the press conference, too. Okay. So you heard the story of one of our amazing advocates, Carla Rabinowitz, talking about how she didn't even recognize herself, she was doing this... So, we know that that can happen to people with disabilities. But what do they need? That's the question.
So now you know we have people like that. Then what do they need? And what they need is the voluntary service. And it's very interesting. I learned a lot from Harvey Rosenthal, and one of the things he teaches me is, yes, it's absolutely voluntary, but it is high engagement, high pushing to say, don't you want our services? And if they're not going to accept them the first time, you don't take no for an answer. You don't coerce someone, but you offer it again and you offer again. And if the approach of saying, what's your favorite ice cream? Mine is vanilla doesn't work, then the next day you say, "Oh my God, I see you're wearing a Mets T-shirt, my favorite." You find the ways to connect and you try and you try and you try.
And I think what we've heard today about the INSET Program, for example, amazing statistics, it's an entirely voluntary program, but they go out and meet the people where they are. And again, if they're not going to come with them on day one, they're not going to accept their offer of clean socks, whatever it is. And they'll go back and they'll go back again. And those are the means that work. And the government knows that. New York State knows that. How do we know that? Because they are funding the INSET Program, they're funding the peer preachers. That's where they need to concentrate their efforts and energies in those services that have amazing track records.
Emyle Watkins: For people who aren't familiar, can you just briefly explain what INSET is and what it stands for?
Ruth Lowenkron: Sure. And others can do this much better. As you asked me before, I'm just a lawyer and I know what I know as I say from talking with others. But INSET is a program that really very much is like what I said, it's a program of individuals who meet people with mental health where they're at, and try to bring whatever services it is that they need and also don't have that mindset, oh, what everyone needs is treatment. Certainly, don't have the mindset, what everyone needs is medication. But what they ensure is what would this person need? Maybe it's those clean socks I mentioned before. Maybe it's an employment skills training. They don't have housing, that's a no-brainer. Then let's do something for them to get them housing.
So that is what the INSET program is about. Meeting people where they are, literally in terms of finding people and then meeting them where they are in their lives at that moment and figuring out what kind of needs they have.
Emyle Watkins: Reiterated throughout the day was the fact peers aren't just people with lived experience with mental health conditions. Many peers have also undergone extensive training to be certified by the state as a peer specialist.
Advocates argued they may not only keep people out of the hospital, but prevent people from dying or being incarcerated while in crisis. After the press conference, when advocates returned to the egg to hear from experts Assemblymember Eddie Gibbs shared his perspective as someone who was formerly incarcerated.
Eddie Gibbs: Good afternoon. Now, I know it's a cold Albany afternoon and it's a Tuesday, but we can do better than that Alliance. Let's make some noise. Good afternoon! Yeah, I need that energy! I need that energy! I'm here. First and foremost, my name is Eddie Gibbs. I'm a New York State Assemblymember, representing the 68th Assembly District in East Harlem. Excuse me, my Pittsburgh still a hat. Yeah, East Harlem. Yeah.
I made history four years ago by becoming the first formerly incarcerated New York State legislature. Yeah, it's a big thing. It's a big thing here. And over the years we've been pushing some serious legislation and partnering with Alliance and I am so excited about your priorities. Alternative to involuntary treatment, expanding voluntary mental health services, investing in housing first models, 7.8% rate enhancement and Daniel's Law.
I want to talk a little bit about Daniel's Law, if that's okay. I mean, as the first formerly incarcerated individual, I've seen a lot of things inside prison, amen? And I want to say that it's time for the long-awaited Daniel's Law to pass so we can stop criminalizing mental illness. We need treatment, not jails, because too many people, especially people of color, get caught up in the criminal system, the criminal justice system, due to their mental health challenges.
How many of us know people who are locked up right now due to mental health challenges? How many of us have friends and family members who are locked up right now because of mental health challenges? We need systems that serve people, not use the criminal system just as a mental health system. A lot of my friends, they need hospitals, they need services, they need these doctors to come in and diagnose them. But the judges say, "Hey, let's imprison them." It's not right. Let's send them to prison and let them figure out what's wrong with these men and women. And these men and women suffer dearly in prison.
Emyle Watkins: Daniel's Law, which the legislature has included funding for in their proposed budget, would provide trained crisis response teams of EMTs, peers, and mental health professionals to respond to a crisis rather than police. The law is named after Daniel Prude, a 41-year-old Rochester man who was killed when restrained by police during a mental health crisis in 2020.
Christina Sparrock, who serves on the state's task force for Daniel's Law shared why it's personal for her.
Christina Sparrock: Oh, definitely. I'm passionate about Daniel's Law. I'm a person who has lived experience of living with bipolar. And I had police come to my house one day and it was during COVID and someone was banging on my door and I didn't know who it was, and I lived in a doorman building. And so immediately since I didn't know who was at my door, I ran into the kitchen and grabbed a knife only to defend myself because I felt somehow my rights were being violated. And I just kept hearing them banging and banging and banging on my door, and I freaked out.
When the banging stopped, I called the doorman, they said the police were there to do a wellness check. If my door were unlocked that day, they would have came in and I could have gotten shot. And their body cam footage would have shown that I was the deranged woman, yielding a knife and racing at the women. In fact, I was a woman who was scared in her house with a knife regardless of my diagnosis. Because anybody else, if someone was banging on your door, they're going to come in. You would do anything you could to defend yourself. It's a frying pan, it's a chair or whatever you're going to pick up, you would defend yourself. So I would have been killed that day.
So I'm advocating for if there's a wellness check for peers, people with lived experience who are crisis trained peers who have compassionate care to respond to people who are in crisis because police, they are trained in the use of force and to respond to crime. When you call 911, 911 should have three responses, right? If you call for a fire, get FDMI. If you call for a medical issue, the ambulance, if you call for crime, you get the police. But if you call for crime or mental health, you still get the police. And that's why the police are trained to use force against people with mental health conditions, which is not fair. When your public health response, which is like Daniel's Law, you have crisis trained peers and an EMT worker to come out to your home when you're in crisis to give you the supports that you need, the emotional support and the medical support that you need. And then have them decide if you need to go to the hospital or you need any other type of treatment, the police should not be involved at all.
Emyle Watkins: I'm really sorry that happened to you. And something that struck me as you were talking about that is how something as simple as how someone knocks can impact someone's emotions and response. I guess I'm wondering in terms of responding to people in mental health crisis... I'm trying to think of the right way to word this.
Christina Sparrock: How do you respond to them?
Emyle Watkins: Yeah. Do you feel like it's major changes that need to be made or is it those little things, like thinking about how you knock, thinking about how you talk to someone, is that training something that's super complicated and expensive or is it really not as difficult as people make it out to be?
Christina Sparrock: Right. Currently, now police get CIT training. It's called crisis intervention training. But they are taught by clinicians and social workers and other officers and how to properly engage with people, peers who are living with mental health concerns. When I was part of the CIT program, there was only, I think maybe one hour of a 36-hour training on me and other peers presenting to the police. But that was a very small percentage of the training.
It would be really good if peers alone were able to train the whole 36, 38 hours to the police because they'll get to understand that we are human, we have feelings, we are capable, we're competent, and we're not dangerous. I find people who don't have diagnosis more dangerous to me because those are the people who trigger me and get me sick. But who comes to them when they're triggering me? Are they held responsible for their actions? No, I'm held responsible for my actions, but no one asks me what happened. They look at me as, what's wrong with me? Ask me what happened and I'll tell you. And then we could have a conversation about how the other person triggered me or activated me.
But also not even that. Why don't you check their behavior also? It takes two people. And so as with the training with peers, we learn how to have compassion because we've been through it. We know how to navigate the system, we know what recovery looks like because we have our ups and downs. So we're best suited to talk to somebody and say, "Hey, I'm here with you. Teach me how to... Let me know how I could best support you. Can I sit next to you? Do you mind if I ask you your name? If you want to vent, just keep venting. I'm here to support you." Yeah, we're here for an hour. You keep screaming. It's okay because you know what? I'm here to support you and I want to be okay.
And then you tell me, is it a housing issue? Is it a domestic violence issue? Is it a criminal justice issue? It can be any issue the person's dealing with at any particular time while they're in crisis. And that's our job as crisis-trained peers, to sit there with you through the moment and help you through that journey and the recovery process to help you get the care that you need. Because the problem is that the system is failing and that's why people are in crisis. If we don't have culturally responsive, trauma informed, person-centered care, how can you help people? You'd have the cookie-cutter box medication. You always take more medication and medication's not for everyone. You have alternatives of medicine that could be holistic care, like Reiki, chakra, meditation, yoga, Pilates. It could be a combination of things that can help people do their recovery.
So it's like we need to start really more connecting with each other as human beings and get to know each other and what makes us tick. For me and my friends who are close to me know when I'm in crisis, I love vanilla bean ice cream and I love my alma. So if I'm in a corner, snot nose, whatever, you remember, vanilla and bean ice cream with my alma and I'll be all right, but don't dismiss me. Ask me what I need when I'm not well, and I'll tell you. And if you're my friend or my accountability partner, then you do what I'm asking you to do because [inaudible 00:38:12] recover, and it'll help with my recovery.
Emyle Watkins: Thank you so much for sharing that. And today is all about connecting with peers from across the state. Hearing about issues from Buffalo to Binghamton to the Adirondacks down in New York City where you are, what are some of the commonalities you're hearing about what people are facing?
Christina Sparrock: Definitely the failures of systems. We do not have enough mental health resources in the community. I know, like I was in a Daniels task force, and people in New York City think the New York City is the center of the world, which probably is, right? But we don't, sometimes we neglect that other communities may not have the funding that maybe New York City has to get the adequate resources. They may not have the community-based services to provide the supports that they need. They may not have and they may be heavily reliant on the police only because that's all they have.
In New York City, if you only have, I think a possible 24 mobile crisis teams, which is not good, we have a city of about 9 million people. And if you're asking a crisis mobile team that has a peer and a social worker to come out to your house and they're supposed to be responding maybe in 28 minutes, they can't because they're responding to everybody else in the five boroughs. And that's how the police get involved because if you don't have an adequately funded program to support you, the police get involved. So it's more like what we need across the state is more funding and having our elected officials fund our programs, but especially the ones that have a good track record. You don't fund every program.
Emyle Watkins: Funding these services also means paying for these workers, which became the focus of the last event of the day. After the experts in the egg and a quick lunch, advocates filled the war room in the capitol building for a rally. They were pushing for a 7.8% cost of living increase for frontline mental health workers. Since then, the legislature has confirmed their support for this cola in their one house budget.
Group chanting: We can't wait! 7 point 8, we can't wait! 7 point 8, we can't wait!
Emyle Watkins: 12 hours after the group had left for Albany, they were back on the bus and heading back to Buffalo. Rita took a moment to share with me how her day had gone.
Emyle Watkins: How are you feeling physically, emotionally after everything today?
Rita Lorenz: Physically tired and honestly emotionally happy.
Emyle Watkins: That's great. I feel like when we talked this morning, it was like heavy in a way. I think it was... Seemed like you were feeling the emotions of like everything that was about to be talked about. Tell me how you went from that to feeling happy and positive by the end of the day.
Rita Lorenz: Well, usually when something like that does happen, that's how I normally feel because I've gone through it myself and I want to see others get the help. And seeing that they are going to be getting the help is what makes me happy about that whole situation because I've gone through it and it really sucks and others don't know how to get through it.
And I try to help them the best I can. But now that we're able to get more grants and stuff to get people the help that they need, it's really good. It makes me happy.
Emyle Watkins: I asked how she got into mental health advocacy.
Emyle Watkins: How did you get involved with mental health advocacy? I don't know if we talked about that this morning.
Rita Lorenz: My mom. When Empowerment Academy used to be a club, my mom was going there, I was 16. I used to go with her and when me and my fiance went homeless, I told him there's got to be somewhere we can go to get the help. He suggested there, and ever since I've been going, and that's since September of last year.
Emyle Watkins: How are you doing today? You said you were homeless a year ago.
Rita Lorenz: Yeah, actually we're doing good. We got an apartment coming up either sometime this month or April 1st.
Emyle Watkins: That's so exciting, congrats. How does it feel to see that progress in your life?
Rita Lorenz: It's wonderful because it shows me that if I can do it, I can help others get it done as well, which I try to do.
Emyle Watkins: Absolutely. I feel like I met a lot of people today who were either previously unhoused or currently unhoused, and I think that people have an image of someone who's unhoused in their head and then actually meeting people, it's really different. Is there anything you wish people knew about the experience of being homeless or what it's actually like or who you actually are? Like how that... I don't think people realize it can happen to anyone because I've met people from all different walks of lives who have become unhoused or homeless.
Rita Lorenz: I never thought it would happen to me and it did. And I'm like, "Okay, what resources are out here that I can utilize?" And no matter where you are, there's always some kind of resource. In Buffalo, we got the nurses that come to the bus station on Tuesdays and Thursdays. We got Regina's on Mondays, Wednesdays, and Saturdays at 7:00 PM right diagonal in Farmer's Park from the bus station. We got a food truck that comes Tuesday through Saturday, varying between like 5:00 and 6:30 through them days.
And then you also have people that come hand out food and clothes during the weekend on both Saturday and Sunday. You got people that come do church out on the street on Sundays, whether you're homeless or not, you can go hand out free food. There's so many new resources out there that people can use and people just don't want to do it.
Emyle Watkins: Do you think there's something in particular that makes people not want to access that or that is a barrier?
Rita Lorenz: I think it is a barrier because a lot of people... I know when I first went homeless, I was afraid to ask for any kind of help and that was my barrier. I think that's the main barrier that's going around is that nobody wants to ask for help.
Emyle Watkins: Can I ask why you didn't want to ask for help?
Rita Lorenz: Because I thought I could do it on my own. And boy, was I wrong? But I'm glad I started asking for help.
Emyle Watkins: What kind of resources helped lift you out of that and empower you to get to a place where you're moving into your own place again?
Rita Lorenz: Empowerment Academy, definitely. They were the biggest support plus the staff up there and the nurses at the bus station, they've all been very wonderful in supporting me in my journey to get to where I'm at today.
Emyle Watkins: Empowerment Academy, which Rita mentions is part of Restoration Society, a Buffalo organization that had a strong representation on the bus.
Mike, the bus captain, who works at Restoration Society as a certified peer, shared what that job is like and why it matters.
Emyle Watkins: Talk a little bit about... [you] got a little less energy now than this morning.
Mike Seitz: Yeah, I know. That's the reverse. The day was great. Every day in our morning meetings at the recovery center, we always talk about how different recovery can look for each person at any given day. And we talk about, as folks get re-acclimated into the "real world" from our community and from our recovery community, take advantage of every opportunity that presents itself.
Put yourself out there, take a chance. And we say at our center that if you come in and if you're waiting for somebody to take you by the hand and lead you on the path of what we think your recovery should be, then we're doing a disservice to you. So we tell people you need to be assertive and you need to be your own best self-advocate. So that's why, honestly, having our customers witness just what advocating for your rights and for yourself actually has the power to potentially do. That's exactly what this is all about.
Emyle Watkins: I noticed you used the terms like customers and clients today instead of, some people in the mental health field would say patients. So talk to me a little bit about the language difference there.
Mike Seitz: Yeah, we are a peer-run agency, which means that... I think the statistic is somewhere around 80 some odd percent of us that work for Restoration Society self-identify as peers. We may be clinicians, we're obviously service providers, but we come with lived experience, we come with shared experience. And as a peer we strive to be really transparent about that part of ourselves.
It's one thing to say what we think is best practice, but it's another thing to say, "I've lived it and this is what was best practice for me and potentially maybe for you."
Emyle Watkins: And talk a little bit more about Restoration Society for people who aren't familiar.
Mike Seitz: Restoration Society, we just celebrated 50 years. We are one of the last of a dying breed of true grassroots not-for-profits, consumer or customer-driven passion work. We are all about providing a framework for what our customer's mental health recovery journey is going to look like. So we cover the basics from housing to safe space to access to a recovery center and all those services, employment services, core services, which are designed to meet someone on a more individual basis.
We provide a program, multiple programs within one agency that's like one-stop shopping. And the beauty of it is we acknowledge and we're very transparent with our customer from day one that we can't do everything and don't expect us to do everything. But if we can't do it, we're going to find out and figure out who can.
Emyle Watkins: I noticed as I've been covering the budget as it relates to mental health, a lot of the focus does get put on clinical services, crisis services. Talk to me about why that holistic approach that your organization takes works or why it's important or how it fits in?
Mike Seitz: Well, in psychiatric rehabilitation language, there is a benefit obviously to the clinical side of mental health services, but a lot of folks who are maybe at their rock bottom that are coming off of maybe recently being unhoused or homeless, they're very pre-contemplative. They're not ready to talk about what treatment looks like in the capacity of possible clinical services.
They want to know that they can go somewhere where they're going to be around peers, where they're going to have the safest space that we can possibly provide, where they know they can get off the street, have a hot meal, find a sense of community, and then slowly build on all of those things to develop a framework to develop a set of goals that can potentially lead up to clinical services in that side of recovery. But we offer a more sort of holistic, very warm, inviting, fostering sort of approach.
Emyle Watkins: And I understand if you can't answer my next question, but I'm wondering your personal opinion, not the opinion of your agency... I know you're not speaking on the behalf of your agency... but a lot of what was talked about today is the difference between voluntary and involuntary commitment and treatment. I know the governor is pushing for expansion of involuntary treatment. Is there a role for involuntary treatment in the mental health system? What on a personal level do you see it fitting in?
Mike Seitz: I think there's very specific extreme and individualized cases where, sure, I think for that person's safety, yeah, maybe sometimes involuntary treatment does need to be an option. But what I've learned and what I've learned through Restoration Society is that a lot of times if you just take the time to get to know the person, meet them where they're at, and allow them to feel and know that they're in a safe environment, which can lead to conversation, which can lead to goal exploration, you'll see that there's other options, that there's other viable options and avenues that they can take.
Emyle Watkins: A question I've been asking a lot of people today is... I've heard from people who are strong advocates for involuntary commitment and involuntary treatment, Kendra's Law, some of them will say, "Well, people with mental health conditions, they're not well enough to make those decisions for themselves." And I've heard a very different narrative from mental health advocates who work with people with mental health conditions or live with mental health conditions themselves.
I'm wondering if you were face-to-face with a legislator who was telling you that this is needed because someone can't make that decision for themselves. What would you say to them?
Mike Seitz: I would say to them that our community, our mental health community is much more diverse than I ever would have imagined before I entered the field. We have, in that diversity, people who are beyond educated, beyond wise, come with more life experience than I have at this point in my life or may ever. And depending on where you are in your mental health recovery, I've learned that it's never an excuse for bad behavior. It's never an excuse for not wanting to at least make an attempt to put your best foot forward, to be your own best self-advocate when it comes to your recovery.
Mental health struggles, recovery, that whole journey does not mean that you're stupid, does not mean that you're incapable, does not mean that you're able and willing. Level-headed, intelligent.
Emyle Watkins: How has working with the mental health community changed your own perspective about your mental health or how you care for yourself?
Mike Seitz: Well, I think quite often when folks struggle with mental health as I have, as someone who's peer-certified and identifies as a peer, you often feel like you're on an island, like you're alone. In my case, that aloneness could have been very dangerous.
Emyle Watkins: And peer work can also be a motivator for people seeking recovery. Brandon White was eager to tell everyone throughout the day about community acts of kindness, a program he helps run at Restoration Society. On the bus, he shared his story and how motivation has played a role in his recovery.
Why connect peers and people in recovery to this kind of volunteer work? Why is it so important?
Brandon White: Oh, yes, it's important. I would say it's important because in my personal experience, I think it's important because it demonstrates the value in helping someone else as far as it's the emotional benefit. It's the emotional benefit that from being kind, that's why we call it community acts of kindness. I think that being kind contributes toward motivation, contributes toward a good feeling and contributes to healing.
And for all, everybody that experience trauma in life, I think that kindness is a technique that can be used to bridge an emotional gap, letting someone know that you do care. It demonstrates a lot. Dealing with yourself first, then you can apply it to others, if that made any sense.
Emyle Watkins: No, it did. And I mean, even today I noticed getting... When we got to Albany, you were the first person to be encouraging everyone and bringing the sense of like kindness and joy to the day. And I see how it makes a difference in the attitude of everyone.
Brandon White: [inaudible 00:55:34].
Emyle Watkins: I guess I'm wondering was there an act of kindness that made a difference in your life that inspires what you do?
Brandon White: Yes, yes, indeed. This is really... To be truly honest, working with the mental health community, displaced the community... I'm sorry for my vocabulary, it's kind of different. They say homeless, I say displaced.. Working and volunteering in there, I've seen the giving that happens in there when they have nothing resonated with me in my life when I have nothing, but I'm still giving and I think that is very inspiring. So this is what I do to give back, this is my life. It's like a standard that I live by.
Emyle Watkins: Do you mind me asking if you're comfortable sharing a little bit more about your personal story?
Brandon White: My personal story? Where do you want to start? I said there's many books. Many books. Well, I have a trauma. Okay. I get a trauma. I am a survivor, brain injury survivor, attempted murder survivor. Yeah, shot down on the streets. I've been beat up left for dead. I experienced police brutality. I experienced a lot of BS, some for being ignorant and some for just being evil. If there's such thing as evil. My trauma comes from, I would just say being ignorant. So what do you want me to share?
Emyle Watkins: No, you mentioned that... It sounds like you went through a difficult time in your life that brought you to Restoration Society.
Brandon White: Okay, yes. Now, that I ended up, I was homeless here in Buffalo and some bigwigs came and bought the property and, of course, I couldn't meet their standards. And, of course, I had to hit the streets. And I went to a shelter and like I said, one of the bums or one of the homeless, one of the displays said, "Hey man, dude, if you want want to go to a cool place, go check out down the street." So I went there. Those guys had a pool table, they had everything that I liked, but it was in a positive trend. They had pool tables, bars, everything, but it wasn't no alcohol, it was just fun. And it was a recovery center.
So I went there to just use them for their pool table and their bar, candy and snacks. But their staff there was being... They was contributing towards... They introduced me to the world of recovery. I didn't want to recover. I was just homeless. I just needed to probably tap in and get out of homelessness. But their staff just said, "Hey Brandon, you have skills. I see a lot about you." And they were just veering me towards different things. And the moment I became an advocate, they directed me to the Academy of Peer Services, and that's how I learned about the peer movement.
Emyle Watkins: There's only a few weeks left for the governor and legislature to decide what they're ready to do. This has been 'What's Next?' on WBFO.
A special thanks to The Alliance for Rights and Recovery and the group of advocates from Buffalo who allowed us to spend the day with them and hear their stories.
You can listen to this episode and others on demand at WBFO.org. I'm Emyle Watkins for WBFO.
