okay amazing all right so welcome everyone thank you so much for joining us this evening and sticking around after the screening of our film we are really excited to welcome our speakers today i’m going to briefly introduce NAMI NYC, the co-host of this event and then we are going to get started. NAMI-NYC, the co-host of tonight’s event, is the national alliance on mental illness of new york city. We are a grassroots mental health organization based in new york city but currently running remotely and our mission is to provide support, education, and advocacy for all individuals and families impacted by mental illness. Right now that means that we have classes and support groups being run through zoom both for people living with mental health issues and for their family members and loved ones. All of our groups are peer-led which means that our groups for those that are struggling with bipolar disorder or hearing voices or depression are facilitated by people who have struggled with those things. Our family and friends groups are similarly facilitated by trained volunteers who have personal experience as family or friends. So our goal is to create a community where people can talk about their experiences without shame with people who have been there and we’re really hoping that you’ve been doing that in the chat already and that we’re gonna continue that conversation in that vein this evening. You can find out more about any of our services by contacting the helpline monday through friday 10 am to 6 pm 212-684-3264 or at helpline@naminyc.org and you can also always visit our website at naminyc.org So with that quick introduction thank you again so much for for being here. One of the central issues that this film touches on is the importance of housing, that a safe and stable and supportive environment is really central to a meaningful recovery and that often people with serious mental illnesses face a lot of barriers in finding a place to live where they can have the supports that they need. So in this conversation i am really hoping that we can learn more about the impact of housing on recovery and the barriers that people face in accessing it and we have with us today four people who are able to speak to this subject from a variety of different perspectives so i’m going to ask each of them to say hello after i introduce them so that you see their faces and i’m just going to go through and introduce in alphabetical order so first we are very pleased to welcome Michael Andersson who is a NAMI-NYC in our own voice presenter and peer-to-peer facilitator among other things. Next we are welcoming Daniel H Gillison Jr ceo of NAMI national hello — and next we are welcoming Dr Kenneth Paul Rosenberg director and producer of Bedlam Pleasure to be here — and finally we’re welcoming Sammy Davis Santana program manager at brooklyn self-help and peer specialist at the brooklyn peer advocacy center — thank you for having me — So i’m really excited to hear from all of them and i hope you are you all are as well and for our panelists since we do have a limited amount of time together i am going to be keeping close track of time and i will cut you off if needed in the service of hearing from everyone and really having a lively conversation so if you see me looking down that’s me looking at my stopwatch i’m not like texting or anything i promise. I’m not gonna call on every one of you for each question we’re gonna just bounce around a little bit but depending on people’s responses i may ask you to respond to each other so you know don’t tune out; and for those of you listening in the audience i’m definitely hoping that the conversation in the chat continues to be just as lively as the conversation that we’re having here. So with that i would love to get started and i’m going to start with one question that i am going to ask everyone to speak to because i think it’s a really important framing for the rest of our conversation so the question is: what are some of the root causes of the lack of treatment that many people with serious mental illnesses face? I’m going to ask ken to start out with that although in some sense i feel like the movie that we just watched is sort of an answer to that question but i’ll let you speak to it yourself. Well thanks again such a pleasure to be here. I always feel so at home at any NAMI event, NAMI national, NAMI-NYC, NAMI chapters across the country have been so welcoming but more than that it’s just, i’m a family member, i’ve experienced this firsthand, and i just can’t say it enough i feel at home being here, so thank you for letting me come home once again

What are the root causes of mental illness? Of course there are many there’s no single one and they’re all kind of intermingled, but i think the first one is ignorance and hand in hand with that is shame and discrimination and that people don’t talk about it. The reason we made the film is so people would talk about it, so that i would talk about as a psychiatrist. As you know from the film i rarely spoke about my sister’s mental illness until i was about 40 years old, 50 years old A lot of my friends didn’t know much about my sister and her bout with schizophrenia until they saw the film or read my book. I think that many people much wiser than i have said you know we can’t solve a problem if we don’t acknowledge a problem, if we don’t talk about the problem We can’t solve a problem when we say it’s someone else’s problem — this is just the guy or the gal we step over the streets, no! 50% of us at least have some psychiatric crisis in our lives, one in five of us have some need for serious psychiatric interventions — just like we have the need for medical interventions, it’s no different, but we make it like it’s someone else’s problem and we rarely talk about it. So i think ignorance, discrimination, stigma all that kind of package is the number one root cause. I think there are other causes; i think my profession is largely — not responsible, but certainly they’ve been colluders in not having really the proper care. We have good drugs, we have good psychiatric treatments but they’re not the best. I mean if you have a bipolar disorder you’re on a medication that’s about seventy — seven zero — seventy years old. That’s not the case if you have hiv, god forbid, or if you have breast cancer. So i think we need better more relevant treatments Also if you have a psychiatric illness you’re more likely — 10 times more likely in some places — to be in a jail than be in a hospital, that is, you know, really quite wrong too. And you’re much more likely to be homeless, you have a 25% chance of being among those people who are fatally shot by the police, so i think there’s a systemic issue going on, and of course when we talk about racism and discrimination that only compounds the issue So i’ll stop there just to be brief but i think there’s many many factors. But i would put ignorance and shame at the top of the list Absolutely well you’re perfect you’re just coming up on three minutes so i love it. Next i’d love to hear from Sammy if you have an answer to this question: what are some of the root causes of the lack of treatment that many people with serious mental illness face? Okay so similarly to what Ken just said i also have a few — the first one i would say is the lack of proper resources, which is connected to knowledge of where to get services from, who to get services from, where to go. Not everybody knows where to go properly because mental health services have these general labels where you go for one thing and all that’s treated as one thing and also with that when you go to receive services from an agency provider or whoever the case may be, they might not be a good fit for you. You’ll say, “Oh i have this, i’m going through this” and they’re like: “okay well go there,” because that’s where they help the quote-unquote crazy people or the bipolar people or whatever the case may be and that might not necessarily be the best treatment or option that is available for that particular person The second one like ken said is the stigma associated with it, the lack of representation and identity; you know coming from a perspective of someone who has a diagnosis, you know, when you go anywhere the first thing you had is: can they relate to me? do they identify the same way i do? you know do they see things or process things the way that i do? you know in my  — when i go for services do they see me as a patient, a number, a statistic, or a person? you know what do they see me as? which kind of also goes back to resources, you know it’s like when you go to them, are they doing the right approach to help you, is it just like oh come in, do an intake, we’ll sign you up for whatever, that’s it — or are they actually gonna you know work on a progress plan are they gonna actually work with you on your goals or identify what it is that you want to do That was like my big two. Perfect. So Sammy just for the next question can you move a little bit closer to the screen and the microphone yeah they’re a little bit far away Perfect, yeah i think that should be better Okay so next, michael, love to hear from you Sure. So i’m just thinking about it in terms of my own experience; i live with bipolar disorder and post-traumatic stress disorder, i was diagnosed back in 1997 and i think about my own — the first eight years from the diagnosis from about 1997 to 2005 —

i want to call it [that] i didn’t opt into getting treatment, so the treatment was available but i wasn’t — i was too paranoid, i was enjoying the manic highs and not seeing how it was affecting my family, how it was affecting me, ending up in the hospital — i think i was hospitalized about six times in those years. So i think the treatment was there i just was not buying into it and i think part of that was because some of the medications, the side effects of the medications, were i gained 75 pounds, like some people often do, and had the tremors in the hand, and i don’t think that — that it was explained very well to me in the beginning that these are things that you’re going to have to overcome or cope with or deal with and i could see that from many people, especially if you’re living in a paranoid state, how that might turn you off from getting treatment even though the treatment is available Really good point, thank you. And finally Dan love to hear from you. The first thing i want to say is to Sammy, Michael, Clara to you and to NAMI-NYC, thank you. Thank you for what you do, thank you for all that you have been doing, you make such a great difference in the lives of so many people and their families so kudos to you for what you do. And thank you to ken for this documentary he gave five years of his life to do this and this is such an important documentary, so thank you Ken. In terms of the root causes; I think it’s early — well, everything that’s been said is absolutely correct and i want to build on it and one of those other components is early intervention. 50% of people with severe mental illness that is identified, it begins at 14 and then 75% by age 24. So early intervention is critically important. Medicine just by its nature is reactive but if we can do any kind of proactive measures on the early intervention side so that we are addressing it upstream, is part of what needs to occur. And then as we see folks get into mental health support it’s expensive — the cost — for many families it’s not sustainable, so looking at the cost structure for mental health And then going to what sammy said about the, i can call it a supply chain or that ecosystem of services — for how many decades have we been talking about the fragmented mental health system? So that fragmentation is what sammy just spoke to So finding a way to reduce that fragmentation so there is that systems of care and that continuity of care that an individual can see themself going through and is easy to understand, easy to access, is rich with resources, and meets the needs of the patient and and their family. So those would be some of the things that i see. There’s also the shame, the stigma, the discrimination, and do we see the patient or do we see a number? So what can we do to silence the shame and reduce the stigma and have this– if you all look at something that’s been occurring in the united states — years ago we started seeing a campaign on mental wellness checkups. Go to your doctor to get a — no, a physical wellness checkup Well, let’s look at changing some of that for mental health. Thank you all. So now we’re gonna just dive a little bit deeper. i think you all brought up some really great points, but i’d love for a couple folks to dive a little bit deeper specifically into how racial disparities factor into some of those root causes that you all spoke about and i’d like ken to start us off again with this one. Sure. You know there’s some dreadful studies that show if you have a person of color as a patient and a white person as a patient, the psychiatrist who evaluates them — and bear in mind that fewer than 5% of psychiatrists are people of color — if you have a psychiatrist who evaluates them, the person of color — with the same symptoms — the person of color will get a worse diagnosis, a worse prognosis, and be more likely than the other patient to be sent to incarceration and not hospitalization. I think that speaks volumes, right. I think we know we have systemic racism and so we can bet that it’s poisoned our medical and psychiatric professions as well as our society

So i think that there you have something we really have to deal with. You also know that the police are the first responders and we try to — you know i think we’re making some great strides, largely with the the influence of NAMI, frankly, but the police are the first responders for people who have serious psychiatric episodes, and we know that that often doesn’t go well when it’s a person of color there, and we know, as i said earlier, 25% of fatal shootings involve someone with a mental illness Now how much more likely is that if a person is — if the person with a psychiatric experience — an episode, is a person of color that’s why Black Lives Matter was founded. You know as you see in the film — as you saw in the film, Black Lives Matter is a really important organization, but was founded in large measure to protect not just people of color but to protect Patrice’s brother who suffers from a serious mental illness and spent the first 10, 15 years of his treatment being treated, evaluated and treated in prison and that’s not an uncommon story. My sister was not ever incarcerated; she wasn’t evaluated in treatment, her care was lacking, her situation was terrible but at least you know she had the benefit of going to a hospital first and not to a jail or a prison. So that’s i think for starters what we have to deal with, that kind of intersection points where racism often does a devastating job and you know some — creates just so much more trauma on people like Monty than they would — than they already experienced. You know you hear voices, you feel your hallucinations, and then you have to deal with being in prison. I mean, heck, that’s a lot to bear. Thank you for that. Sammy, i’d love to hear from you on this i’m gonna speak from a limited capacity and i know what i might say might sound a little bit diplomatic but in regards to the racial disparities: i’ve been working two years in the mental health field and i’ve been volunteering since 2001. Maybe the fact that i lived in new york city most of my life and since we have such a big melting pot of different ethnicities and cultures you know in one area — i don’t think there is none I don’t want to say serious mental illness but there’s no identifying culture, face, you know when it comes to mental illness i’ve worked in different places, i volunteered at different places where you can’t really sit down and say “oh we have 80% more caucasians over african-americans” or whatever the case may be. i’ve done intakes, evaluation, so on and so forth and i’ve seen different people’s different cultures. Like at ten o’clock i had one person who was from hawaii, at 11 i had another person who was from honduras, all having these different issues, needing different services and so on and so forth. Like i said maybe it’s a new york city thing since you know so many cultures are intertwined but i think there is no face to it I mean yeah semantically we can look at numbers from other states and so on and so forth and you might get an idea, like ken said, where you know certain demographics or whatever might have a higher percentage of whatever the case may be but i guess from my opinion i think there is none and it’s a kind of universal global thing when it comes to the disparity factor of ethnicities Would anybody like to respond to that? i think that in responding — and thank you very much Sammy — prior to this role i was the executive director for the american psychiatric association foundation and prior to that i was at the national association of counties. I bring that up because in my work running all programming for counties i’ve visited, there’s 3069 counties in the united states. In those 3069 counties, as you all understand, the infrastructure of counties, they run the services the local services, which includes the jails, so i have been to cook county i have spent time at the twin towers — a full day — i’ve been to some of the rural jails and shelby county, coconino county, fairfax, arlington, so what i have seen — and i’ve also worked very closely with law enforcement they all want to go home safe i understand that — but the de-escalation, the lack of prevalence in terms of knowing how to de-escalate a situation with someone who is in a mental crisis — is not

there and when you can’t see yourself in that person then that person may get a different outcome. In the jails i have seen the disparity in terms of color of people with mental illness in the jails, and i’ve also seen the interaction directly from that standpoint, so i would say that there are definitely some racial disparities and just like we talk about stigma of mental illness we need to also almost have on the same line stigma and racism and to say let’s address both of these at the same time because we can’t fix one without the other. So i would say that particularly at the twin towers, spending a full day there and seeing the pods, the area where they had the individuals with mental illness, the disparity was incredible. And it takes your breath away But that is the hospital, it has become the mental health hospital so i would say that there is definitely disparities and some of the root causes are systematic Dan can you for our new york audience that has a different association with twin towers can you give — define what you mean by twin towers? I apologize twin towers is the los angeles county jail, and it’s referred to as the twin towers and it is a huge infrastructure the only other infrastructure close to its size is cook county And cook county i apologize it’s in chicago. Yes, thank you so much. Appreciate you clarifying. So ken i think at the beginning of your answer or at some point in your answer you talked about the trauma and fear of trauma. So i would love to hear actually starting from — with michael, how you feel a fear of traumatization or re-victimization prevents people from seeking treatment and accessing care, how that fear plays a role Sure. I can just speak to — so i don’t — my experience from hospitalizations are similar to what, in the film, in bedlam was showing and i think it was the last hospitalization that i had in 2005 was for three months. i stayed in for three months in order to get placed in supportive housing but you can imagine the things you see during that time and it’s actually worked as a — i’ve only been hospitalized once in the last 15 years Part of it is because i don’t ever want to go back to that hospital, i don’t want to go back to that situation and there was a lot of painful things to see while i was there as as is captured in the film so i think that that creates a fear of re-victimization and a fear of even seeking treatment for some people So yeah that’s how I can answer that. Thank you and Sammy could you speak to that question as well — how does a fear of traumatization or re-victimization factor into preventing people from seeking treatment and accessing care? I’m gonna piggyback off what Michael said because it’s pretty much the same thing. I’m gonna say it’s kind of akin to going back to dark places you don’t want to go to or dark places that — either you fought to get out of, whether it be recovery or whatever the case may be, but it’s going back to a place that brought all this pain, hurt, and trauma to you and most times people — well not people but — there’s an association between treatment, medications, and — there’s a connection between it where they see treatment, medication, seeking services, help, kind of like as kind of going back there because they’re constantly, they’re in some sort of way reminded of what happened, where the root, was, the origin, so i don’t want to say it’s a trigger but it kind of makes something like –okay i might have to possibly face whatever i faced or i might — or by going to a service provider they’re gonna ask me about my diagnosis and then that’s gonna bring back memories of where i work, so it kind of becomes a barrier and kind of amplifies that fear because then you’re like “okay i don’t know if i can handle going back there” so you know with that connection it kind of makes it difficult for someone who might not be ready to go back and kind of creates that barrier where you know the fear comes from of being re-traumatized again. And i think it goes back you

made a point earlier Sammy about the difficulty of not having people that you can relate to and i think that is definitely connected as well So as i said at the beginning we’re talking — we’re trying to focus in on this conversation a little bit on environment and housing and how that plays a role. So i would — again that’s obviously a major factor in the film and several of you have experience specifically with that arena, so i would love to hear, starting — i’d actually like to start with Michael again What does a safe and supportive environment for serious mental illness look like and how do we ensure people can access those environments? Sure; so i can speak from my experience, i’ve been in supportive housing for 15 years now and first of all i think what i love about it is there’s kind of a mix of — autonomy but there’s also a lot of expectations that i had to go through. I started off with two roommates; i graduated to my own one bedroom apartment, i have a case manager who meets with me once a month but in the beginning, three days a week i had to be in the apartment pretty much every day for about four or five hours and they would come and count my medication, so it was pretty strict; i had come out of the hospital like i said for a three month stay so i was just so happy to be somewhere. Before that i was sleeping on my parents’ living room floor, so it was great to have my own room in housing My roommates also were living with mental illness but the program that i’ve been in, like i said for 15 years, graduating to my own place there’s really a sense of safety, dignity, autonomy I– We have a tenants meeting once a week, we do socialization activities — of course all of this depends upon funding, they’re funded by the OMH, the office of mental health but — there are activities for us; we have a thanksgiving party, a christmas party, and during covid19 they’ve been fantastic in keeping us informed and helping us out. They had a clubhouse which they lost due to funding but that was a place for us to go; they work on vocational goals, educational goals, they helped me go back and get my master’s at hunter; so i feel very very supported it wasn’t like i just ended up leaving the hospital and getting an apartment or an apartment with roommates, there were all these supportive services, these wrap around services so i could take the next steps to find work, to go back to school, to find NAMI — that’s how i found NAMI, and my volunteer work at NAMI became kind of like my program; a lot of people were going into — how to do program work and this was my volunteer work. So i think also for people that have come through a lot of abuse and a lot of trauma safety is really key. I felt very safe i felt very safe there i don’t know if every housing in new york city and every single board of housing is similar but i really have felt safe here. And my family is so thrilled because you know i’m i’m here and protected even though we live in the same borough; they know that i’m doing okay Thank you. Dan i’d also love to hear from you about this, if you can speak to this question Yeah, thank you. I think the first thing is what — we need a holistic approach, we need a continuity of care it’s kind of what — I apologize — what michael has shared in terms of that supportive housing and that we need to look at models that can be replicated. We need a full continuity and systems of care and we need to take best practices and scale them and what michael has shared is something that could be scaled. And then as funding has increased it’s — how do we do differently with the funding to have a different outcome. So what we have is — michael’s situation may be a best practice, how do we scale that in other communities across the country to minimize the situation and maximize the upside of it. We also need those social supports in terms of what he talked about education, employment, housing and what Sammy and Michael do, the peer support; that peer support is absolutely critical so i want to follow up with michael after this to learn more about this because what he has shared is something that we need. That voice talking to other communities about his experience and what he’s been able to do and from three

roommates to the educational, to that kind of thing. So housing, employment, peer support, counseling, that — the wraparound services and what i call a systems of care. So i think that question of how do we scale that is actually a really good one and i’d love to — if you can speak a little bit more about that and then i might ask some other folks if they have ideas about that particular question; how do we scale this to make sure that more people can access it? i think data is critically important there So you have to step back and go to managing by some of the facts and you work with communities to find out what have they done, how did they scale it, the financials. So I think that’s how you scale it first of all to find out — because as when i was working with the counties, as i learned, when you’re working with one county you’re working with one county, they’re not all the same, the footprint is not all the same, the size is not all the same, in new york westchester county looks very different than a borough. So you’ve got to look at it from the standpoint of: let’s grab three or four examples that look different, a metropolitan, a rural, an urban, and then say “okay let’s take those”; this was the infrastructural look and feel of it, in terms of size, the financing, number of rooms, number of clients, and then take that and see if we can actually go to maybe break out the country in regions and go to the — each region and say: we want to go ahead and stand this up as a pilot in this region, this region, this region, and this community within that region, and let’s go ahead and look at it for a year to 18 months and see if it works. So getting the data first, looking at maybe four different scenarios and then seeing if we can choose communities across the country to replicate it and actually test it and embed it in those communities, with the financing to make sure that that’s not an issue. Yeah, financing is definitely key. Ken, do you have thoughts about this, on how to sort of — this question of scaling? Well yeah i mean, first of all it’s just wonderful to hear the stories that michael and sammy have to offer i’m so so grateful for those stories and so grateful for your participation, really, because i think where it’s at is really what dan was talking about a peer-to-peer movement and people having agency. And they’re — in, you know, their own mental health, not just you know doctors and you know professionals and family members for that matter but people who have lived experience, so i’m so grateful that that’s — you know that NAMI really has that going How to scale; you know — we have — it’s a great question, i mean every community has its own idiosyncratic needs. In my book i write about trieste; my book on penguin random house, and in the last chapter we talked about some of the solutions and trieste, italy is a world health organization exemplar for good community mental health care. In fact they have a hospital and they have three beds there and they have very little need for those three beds and they don’t, you know, cart people away through the police they have community mental health workers, there 24/7, they’ve made that investment and, you know, they’re able to do that and a lot of folks are looking at the trieste model and trying to import that to places like san francisco; los angeles is seriously working with the trieste model and trying to bring it to bear. Trieste has some other things that we don’t have; they don’t have a drug epidemic, they have close knit families, and very important to me they have universal health care so as dan was saying you know this is — there’s a lot of prevention going on. As our mutual friend patrick kennedy is very fond of saying, you know, you don’t treat cancer in stage four you treat it in stage one or what we call in situ when the cancer is you know very contained and at its nascent, most benign form. So i think that when you have universal health care in which everyone’s involved in the system, everyone gets a modicum of reasonable care, prevention is really key because, if for no other reason, prevention saves money; and i might mention with the housing situation when we look at housing first initiatives they’re very controversial but in large measure they save money because if you provide someone housing you save so much money in emergency rooms and police and pickups and it’s so expensive to put someone in a jail, not to mention it’s quite inhumane. So i think there’s ways to scale it, but every community has its own way of doing it. I think what dan suggests is really quite brilliant you know take a model and try to replicate it and replicate it in other communities. We have many

communities now that have very good models; summit county in ohio; reno, nevada has a great model; new york city is trying to do things but these you know are specific to the nature of the communities can be completely replicated but really need to be publicized and studied as dan suggests Yeah absolutely; thanks for that. So sammy since you are in this work in a professional capacity, you know with supportive housing; i would love to hear if you have thoughts about the barriers to some of the scaling that we’ve just been talking about. What are the the things that make scaling what michael has described as, you know, being this kind of ideal situation — what are the barriers that make scaling that up more difficult? Sure; so first thing i just want to — michael, congratulations on your journey through the supportive housing system because it leads into what clara just said; you know it doesn’t always quite work out that way and going on what ken and daniel said you know we can try to scale and copy but you know different areas have different needs. But a lot of the main — well there’s a lot of barriers, obviously; the main one is that people don’t quite comprehend or understand how the supportive housing system works. There’s all these little technicalities and stipulations that, you know, they don’t explain to the participants because this is something that we go through a lot. People come to our door, they’re like “oh well our — my psychiatrist told me that because i have a diagnosis you guys have to give me housing,” and it’s not that simple at all. For some people it kind of works out but there’s an application process you know for example you need to have one-year shelter history, you need to have a diagnosis, that diagnosis has to be documented by a psych eval, all these documentations, you have to get a physical, you have to get a ppd and they don’t tell people that, they’re like “well you know supportive housing is for people that have that, they’ll get you an apartment eventually,” and you know a lot of people might not be ready for that because you know going and getting these documentations and getting these appointments is really rough. I mean even after that you’re not guaranteed anything; it’s an opportunity to be, you know possibly placed where there might be a vacancy, and, you know, there might not be vacancies available or you might be given independent living but what they have is only vacancies for level two which is not necessarily what they need So instead of getting you know a housing — a supportive environment like michael did, you’re going to be put in a more supervised environment where you’re going to be given like the stipend and an allowance and you’re only going to be allowed to do this, do that, you know that’s like one of the big main barriers. Also there’s emotional, psychological barriers; you know, people come from different perspectives Some might be homeless, some might be living with their parents, some might be in you know abusive, whatever the case may be, so when you get your hopes up and you’re like “yeah i’m gonna fill this application, i’m gonna get an apartment, everything’s gonna–” it’s like the guy in the movie, i forgot the gentleman at the end i was working with the worker that he had — Todd — that episode outside — i seen that happen a lot and that happens a lot because this wonderful thing is presented to you and you’re like “yeah i’m gonna get it,” and then the process involved is much more complex than that, to the point where people actually break down and they come out actually worse than when they first started because all these little barriers and things that are supposed to help you just make the process unnecessarily more complex and longer and then, long-term, ends up working against you. That’s why you know usually i’m very transparent when people come in for this, i’m like “hey guys you know, this is an opportunity just like the lotto, it might work, it might not work, this is what’s involved in this process, you know, i will be with you through the process, but know that it will be difficult, it’s not going to happen right away, yes, you might luck out and something might fall into place, but know that there will be more downs before there’s ups.” And i could go on and on about this but just for time purposes. Yeah thank you. Thank you for that Definitely more counselors like Sammy! Absolutely. So we’re getting close to our time here but i wanna change gears a little bit and talk about — you know a couple of you talked about decriminalization and the criminalization of serious mental illness so i would love to hear, starting with ken, how does decriminalizing serious mental illness align with creating more avenues for long-term care and supportive housing as we’ve been talking about? Great question. Well i mean, certainly

for some families and even for some people who have psychiatric illnesses they say, you know, “i’m glad i went to jail, i’m glad i went to prison because at least i got treatment there.” But i wouldn’t suggest, you know, we use incarceration as a treatment tool Because whether we like it or not as we talk about in the film and the book the three major mental institutions in this country are our three largest jails. There’s some good things that happen there you know, but it doesn’t lend itself to a productive life. We have better ways to address this with hospitalization, with institutionalization if needed and certainly in community mental health care and all the things that sammy and michael and dan are talking about So you know i mean i think there’s a whole way of getting people on that train and what are those ways? There’s something called mental health courts which many people don’t know about, i’ll mention in passing: mental health courts are if you’re charged with a felony crime and in some places a misdemeanor crime you could be diverted into a mental health court, in which you plead guilty to that crime, that’s not insignificant, but you are now in the path of treatment not in the path of incarceration There’s you know assisted outpatient treatment, which is where — in which people go from a hospital or an institution of some sort into an outpatient treatment in which they have wraparound services and they get some priorities Now it’s complicated and controversial as well, because people then are under mandated or, if you will, forced treatment, but it enables a lot of people to get well and saves a lot of lives. Those are just two of the kind of remedies that we have to divert people away from incarceration and into a setting which is much more conducive. You know, we saw in the film how well monty did when he, you know, had treatment for a year, and had housing by the way as well for a year; we saw how poorly todd did when housing was, you know, hard to get and then taken away from him Dan would you like to speak to that question how does decriminalizing serious mental illness align with what we’re talking about? Yeah, a few years ago — thank you, yes i would. A few years ago there was a national initiative that was created called stepping up and in that it was looked at as the over criminalization of the mentally ill in the justice system and trying to right that kind of — data point; and that is still in place today and it’s over — it’s looking at the fact that the person with mental illness gets into — instead of getting into the mental health system they get into the criminal justice system and once they’re in the criminal justice system it’s very hard to get them back to that system that they should have been in from the very beginning. So this is a a national initiative and several of the mental health organizations are partners in that, including NAMI, and this is looking at that endpoint; you know i mentioned upstream earlier, well, downstream is the impact of that person that didn’t get the mental health — mental illness support that they needed and they end up in the justice system. And this goes from young adults to middle-age adults that are now criminals, when in fact what the situation is, is a mental illness and had it been treated, and systematically treated, and they had that continuity of care they would not have been in the system. The other thing is that when an individual is in the justice system, a lot of times an individual with mental illness — they’re vulnerable, they’re vulnerable in the system and they’re at risk; their safety is at risk, their physical safety. So –and also we know that in the system, the criminal justice system, our criminal justice professionals are not trained to treat, support, care for individuals in that system with mental illness They are there to manage those that are criminals So it’s very difficult for that individual; while they will get the treatment, they can’t get that care, that warm care that Sammy talked about. So this is a very important opportunity for us to address it, and we want people to get care and not handcuffs and how do we change the paradigm on that. Absolutely. So i think for our last question before we, before we wrap this up; one longer question and then one shorter question that i just want to end on. The first

question that i would love to hear i think from michael first, and then from dan again; what does community care look like? We’ve talked a lot about the importance of community and community care, but from your perspective what does that look like and what are the most important elements in that, when you hear that phrase community care? Sure i just — when i was actually thinking about that i think of — i started volunteering for another agency that’s like a food pantry organization, here in in the bronx, but they really — it’s amazing what they, what they provide, you know they provide food and lunches, but they also provide showers, haircuts, grooming, clothing, toys at christmas, a doctor, a dentist, mental health care, social worker, case management, vocational assistance, and housing assistance This is just one organization that’s serving however many thousands of people in the bronx and i look at that and i say that’s really — it really touches upon everything that you would need as an individual in a community Yeah, in terms of this i think the community care starts with this group right here, NAMI new york city; in what you’re doing and what Dr Rosenberg has done with the documentary. Now let me speak to — there is a unified vision for transforming mental health and substance use care. Ken mentioned patrick kennedy; patrick and myself and a group of ceos are part of a organization that’s put together a vision so as — answering your question, let me just go through what does that community care look like? It’s, to us it’s seven critical elements: crisis response — improving that crisis response and suicide and overdose prevention; early identification — achieve optimal outcomes through prevention and early identification and intervention; equity — address sociopolitical constructs and historical systematic injustices such as racism and discriminatory structures and policies that disproportionately impact the mental health of people of color; integration — improve access to services and quality of care by integrating physical health, mental health, and substance use services; parity — ensure that treatment for mental health and substance use disorders is at least as available and effective as care of other health conditions; standards — hold systems accountable to evidence-based standards of care; last, workforce — would it surprise you all to know that 60% of that 3069 counties that i mentioned in the united states have no psychiatrist? And inside of that workforce development, as we look at 988 and looking at providing 988 in communities across the country within the next 24 months, where’s our infrastructure in our workforce to support that 988 work that we’re going to be doing? Five percent of the psychiatrists are people of color; only two percent of those five are black women psychiatrists so we have a lot to do. So crisis response, early identification, equity, integration, parity, standards, and workforce, that’s what it looks like to us Amazing, thank you; thank you all i want to end — this may be a difficult question so i’m gonna — but it’s a short question, i want you all to think about if you had — say a million dollars, a million dollars to put towards one program, one model, one program of some kind having to do with with mental illness or supportive housing; what would that be? And i know that might be a little bit of a difficult, a difficult question so if anybody wants to jump in first– Well, in truth it’s not a difficult question for me because i believe that education really is the key. You know we were the first film at the sundance film festival about serious mental illness. I find that a compliment and also shocking. We need — and I know there will be more films at sundance about mental illness, we, you know i just spoke at sundance the year after about this very issue So i think education, that would be, you know — and i would, yeah, i would put into getting information out there, i would put it into getting, just, you know the point that — the discussion that we’re having now i mean i think to hear dan and michael and sammy is just really fantastic. I would put my million dollars behind that effort and so everyone hears it and knows what is at stake and also what is possible Thank you; who’d like to jump in? Sammy? Yeah i would say support systems;

just because like — the synergy we have going right now is awesome by the way, just going by what — well kind of sort of piggybacking off what ken said, just because i feel that it’s a much more bigger picture than just like getting housing and doing this and doing that, like michael said, you know there’s more to it. You know once you get housing — okay what’s the next step? You know, that person might need to go back to school but they haven’t you know opened a textbook in forever; or they might want to go back to work but they haven’t worked in the time you know in a long time you know. Donate it into, you know, some kind of agency that would bring up these systems like — okay we’re gonna give you job readiness, or you know resume building, or whatever the case may be to, you know, prep them for what’s to come and build up that support system so they’re not just thrown into, you know, this thing or whatever their goal is without no preparation, no kind of readiness, because then usually what happens is they end up you know not progressing, or it becomes overwhelming and then they go back to a state of — that’s not productive. So i would say i would probably donate it to you know some kind of system where these support systems would be in place for people that needed them Thank you. Yeah if i — if we had a million dollars i would try and get some organization to match it so that we would have two million. So that’s the first thing, because — and then if i could share with you, what does NAMI do? Educate and support, advocate, lead the conversation, listen, and build our community. There’s one other piece that we do called research. So those are the five pieces that we do, what i’d love to do is with the two million — because i feel confident that i would work my tail off to get that match — but i would commission ken and i would ask him — he’d probably say no — but to do another documentary and to do a post-bedlam documentary with some best practices, some resources, and say: here’s the learning since the documentary that we want to share across the country to operationalize what you can do in addition to what you’re already doing. All the communities across the country are looking how to further operationalize and provide solutions so we don’t want to go into those communities — at NAMI we meet people where they are and we don’t try to assume we know the answer, so we don’t want to go in the community and say “we have the solution for you, we’ve got something that we can scale,” — we want to go in, educate; the powers and the questions, learn from them what they’re already doing and say “hey we — that’s a, there’s a gap right there, we’ve got something here that could fill that gap.” And i would love to commission ken to do that film and it’s also for us to do convenings across the country with different folks like sammy and michael and yourself talking about what you’re doing because those are nuggets and those are the aha moments that communities across the country will grab something from that they will then take and operationalize in there. Last thing i’ll say on this is: then, actually create a scalable kind of a piece that we could provide to each community to say “if you’re looking to operationalize this further than what you’ve already done, here is the template,” and that’s it. Thank you Well i’ll tell you we are doing that and Dan i’m happy to accept your two million dollars; and you’re absolutely wrong i will never say no to you, that’s not possible, but we are actually — seriously peter miller and i and our team we are working on a film on just that issue. We’ll talk about that. Okay, all right, didn’t know; that’s good, that’s real good All right, michael, you’re last; where would you — where would you put your million dollars? Well, i think that like it would be so great because so many people call the helpline, like the NAMI new york city helpline and i know there’s a state helpline and a national helpline and it would be great to have the million dollars to help people just get educated on what to say when somebody calls and says “how do i get supportive housing for my child or for my loved one?” and so that everybody’s kind of on the same page as to at least know where to begin Yeah kind of going back to the support systems that sammy mentioned; just how to get people those connections and support. All right so we are out of time; i know it seems like we could keep talking for another several minutes but we are gonna cut it off there; short and sweet and hopefully impactful. Thank you all so much; thank you to all of our panelists, Sammy, Ken, Dan, Michael. We really appreciate you taking the time to share your expertise and share your knowledge and i’m absolutely certain that there’s been a lot of great conversation and that this will result in even more really impactful and interesting conversations and

hopefully we can all just get a little bit closer to a a world where mental health care is a little bit more functional than it currently is. So thank you all so much. Say a quick good evening and then say goodnight. Goodnight all, bye everyone, thank you so much, thank you everyone, good night