Housing That Heals: Essential for Many with SMI (Ep 56)

guests:- Teresa Pasquini and Lauren Rettagliata, 2 California Moms on a Mission for a System of Care that Works

From NAMI CA website: Housing That Heals project:

“As two California moms on a mission, we invite you to join our journey across the state and into our future dreams for Housing that Heals for Families Like Ours. 

Housing That Heals is more than a house, a program, or a room key. It is a system of care that wraps a person in all of the necessary medical, clinical, rehabilitative, and social supports that they need in order to live and die in dignity.

We began this journey in 2019, using years of experience as moms, advocates, and community leaders as our compass. We set out looking for solutions that would mend our broken hearts and the broken system. We were hopeful that this would be the year that California would recognize that people who live heroically with serious mental illness need more than “Housing First.” First, they need a full system of care that provides care before, during, and after homelessness, crisis, hospitalization, or incarceration. Housing That Heals is a prevention and intervention plan that will systemically flatten the harm curve for those who live with serious mental illnesses.

We ask:

• What experiences have you had that make housing so important to you? 
• Is there disparity in your state between funding for housing for those with a Serious Mental Illness and Intellectual Developmental Disabilities? 
• Why Housing First and Harm Reduction are not HUD principles that are tied to building affordable housing do not work for many with a Serious Mental Illness? 
• Does Ideology drive the disparity for those with a Serious Mental Illness? 
• Why does your paper talk about marrying the Recovery Model with the Medical Model? 
• What criteria did you use to measure if the housing you visited was Housing That Heals? 
• What Housing have you seen that seems to embody Housing That Heals? 
• Is it possible for this housing to be accessible to those who are on Medicare and enrolled in their states' public system of care?

Links:

https://namica.org/community-voices/team-nami-spotlight-housing-that-heals-project-report/

The paper:

https://hth.ttinet.com/Housing_That_Heals_2020.pdf

Our Housing That Heals Facebook Page:

https://www.facebook.com/housingthatheals

Here is the NY Times Article:

https://www.nytimes.com/2022/02/16/opinion/parenting-adult-children.html

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

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

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

Who:

Randye Kaye - was a morning Radio Personality bringing humor to CT families when her own son was diagnosed with schizophrenia. Now she is still a Broadcaster, Actress, Voice Talent, Speaker, and Author (Ben Behind his Voices, Happier Made Simple)

Miriam Feldman -  is an artist, writer, and the mother of an adult son with schizophrenia. Her book, He Came in With

Transcript

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SPEAKER_01 0:01

Welcome to our podcast, Schizophrenia. Three moms in the trenches. From the place where schizophrenia and real life collide. East Coast, West Coast, Middle America. With Miriam Feltman, Mindy Gryling, and Randy Kaye. Welcome to episode 56. Today we are talking about housing. Housing that heals. It is so essential for so many with serious mental illness. And our guests today have their two California moms on a mission for a system of care that works. This is so near and dear to all of our hearts here on Three Moms Schizophrenia, Three Moms in the Trenches. So I'm Randy Kay. I'm here with Mindy Gryling and Mimi Painter. In a moment, you'll meet our guests, Teresa and Lauren. But let's take a minute and talk about housing because many of our listeners are just at the beginning of their journeys and their loved ones are living with them. And housing is a key to independence and key to so many things. And we'll talk about that in a second. Let me tell you a bit about Teresa and Lauren. And this is straight from the NAMI website, Housing That Heals Project. It says, as two California moms on a mission, we invite you to join our journey across the state, their state happening to be California, and our future dreams for housing that heals for families like ours. We assume if you're listening, you are a family like ours. Housing That Heals is more than a house, a program, or a room key. It's a system of care that wraps a person in all the necessary medical, clinical, rehabilitative, and social supports they need in order to live and die in dignity. And boy, does that sound good. We have done some shows on that. So let's just begin with a really quick summary of where our sons are now in terms of housing. And then we're we're gonna question our guests. So since I have the mic, I'll begin by saying my son, whom I call Ben in all my correspondence about our situation. He's 40. And so he was in a group home for a while after being homeless and a bunch of other things. Then he lived back at home with us for nine years. Then in COVID, he had a breakdown and went back in the hospital. And after that, we decided it really was best for everybody concerned for him to go back into housing. It was a process, and he is currently being housed in a state-run group home in Connecticut. I'm actually very pleased with the care he's getting, but it is temporary housing. He can't stay there for the rest of his life. But what it gives him at the moment is somebody to answer to besides me, and it gives him a different neighborhood to live in, some people to uh who are in the same boat as he is, so some community and uh and he has a very caring staff. Uh but I do know that this and isn't forever, but I'm grateful for the time. So that's a bit about me. Um, Mimi, where's your son?

SPEAKER_04 3:19

Well, right now we're in a very good situation. Um, he lives in subsidized housing that is basically for elderly people and people with disabilities. But we were able to umbrella him into this. So it's the good thing about it is it's permanent. He can stay here as long as he wants, and it's incredibly affordable. There's not much in the way of staff because basically there's an office and there's a you know, a maintenance guy and and a woman who runs the building, but they're very sensitive to the situation of their different tenants, and it's the first place we've been in where we have because everywhere else he's been has been just regular apartments, and that's just been this you know drama of always being afraid of being found out or thrown out or you know, having a problem with some aberrant or something like that. And here they're very understanding and supportive, and it's actually turning out to be a great living arrangement because there's a lot of older people who are you know kind of maternal and and concerned and they look out after each other. So we're lucky, we're very, very lucky we fell into this.

SPEAKER_01 4:36

Awesome, thank you, and Mindy?

SPEAKER_03 4:38

And I just have to say I got to meet both Lauren and Teresa in person in San Antonio at the Treatment Advocacy Center conference uh just recently. So it's so wonderful to have you on the program, two such articulate and both with a great sense of purpose for our common situations. So Jim has lived in a variety of places, but I'm really interested in this program because right now he's not in housing that heals. He's in his own apartment. It's a beautiful apartment. He has a rent voucher, so he pays 40% or less of his income in Minneapolis by the Mississippi River in a very high rent area. Um, but he's right in downstairs in the basement right now with my husband in our house because there is absolutely no support there. He's just all by himself in a lonely apartment. And so he's at our house in his old bedroom and has been here for the the last three years. We couldn't let him do that when he wasn't doing well. Right now he's sober, he's doing well, so this is an option, but it won't last. My husband, he's 45, and my husband is 78, and I'm 74. So um, this is our biggest fear. What when we can't?

SPEAKER_01 6:01

Yeah. So yeah, so that's where we are. And you know, not bad for any of us, but I will say my son has been in a place where the minute he started doing well, he got kicked out, kicked up to his own apartment where he just failed. So there's a lot going on. Let's bring in our guests. We have Lauren Retagliata. Do I have that right? Wasn't it Teresa Pasquini, two California moms on a mission? Uh so let me just let you tell your story. Tell me about the experiences that you have had as much as you can that make housing so important to you. And by the way, welcome to the podcast. Uh Teresa, do you want to start?

SPEAKER_02 6:47

I'm happy to start. Thank you so very much for having us. It's it's really a pleasure to meet you all and um to be to be in this conversation together. Um, I am the proud mom of an adult son who lives heroically with schizophrenia. Um, and I usually, that's my usual introduction that I've used over the years to make people kind of go, wow. You know, I've had people turn their heads when I make that introduction, like, wow, I've never heard that, you know, proud mom, an adult son with schizophrenia. So I do um speak publicly about our um our story, and um I I've done that um intentionally. Um and um um so my beloved son Danny is also is 40 years old, um, and he's fallen through every jagged edge of every broken piece of the California um public-private um and criminal justice system. Um and um he's currently living um in the community for the first time in 20 years. Um he spent the majority of his adult life in um in locked facilities, and he's been on what California calls an LPS conservatorship for the past 20 years. Um and and so this was um explain LPS conservatorship, if you could. So the LPS conservatorship in California is a is um a conservatorship for those um with serious mental illness, so those with mental illnesses, not um not medical illnesses. And and it's um it it's a pro, it's it's um you could either have a public guardianship or a private guardian, or you can be your child's guardian. We were advised not to be Danny's um conservator. Um, and basically what happened was it was um the third hospitalization. Um when he turned 18, he fell off the cliff into the adult mental health system. Um he had been diagnosed at 16, he we thought we had managed his care. He was doing he was doing awesome. He graduated from high school. Um, and then literally on his 18th birthday, he um he was 5150 and hospitalized. And that was when the HIPAA hammer came down, and you know, I knew he was at the hospital, but um when I called, they said, sorry, mom, we can't tell you whether he's here or not. And so we we started going through that dance. So we had that started the revolving hospitalizations, and um, and it was, I think, after maybe the third hospitalization that year, we um received papers from our county guardian's office, the the public guardians, um, talking about a temporary conservatorship. And I was terrified. I had no idea what it meant, went to my girlfriend, you know, what does this mean? And um, and so when I called the office, um, it was actually the public guardian that I spoke to who became a dear friend, and he said to us, why do you keep bringing him home? He's very sick. And that was kind of shocking. And it's like, um, because I'm his mom, you know, because he's sick, because he, you know. And so it was like kind of like uh and he's like, well, you need to talk to um this other mom, you know, and you you need to get some information because he's really sick, he needs long-term care. And you basically you need to hear how to make that happen. So that was 20 years ago. And, you know, what happened was there was a conservatorship. Um, and and that was there was also another another um experience with a psychiatrist who actually told my husband and I, you know, you'd be really lucky if you got him into the criminal justice system. And he said it as if, you know, you were applying to Stanford or PAL, you know, and um and it was like, oh, so this is how we were introduced to the mental health system of California. Um, and for the adult mental health system. And so that started um the past 20 years of revolving hospitalizations, um, sent to live in nine different counties in California. Sometimes we would have to travel um, you know, an hour and a half away to visit Danny. We tried to visit him every weekend. Um, and and this was this was a civil commitment, not a um criminal. This was not the criminal system. I was like, okay, after they said that to me, I am not gonna make my son's not gonna be homeless and he's not gonna ever be in jail, was my you know, promise. Um well that that didn't work out, but um so so anyway, I so we've had these experiences for the last 20 years and literally been in um every every you know um level of care in the state of California, um, and had the experience of being going behind many, many locked doors um and having Danny wait for the step down, um, having him wait for the step up. Um and um and it was you know after he was arrested as a patient in a hospital and criminalized for his mental illness, um, that we were thrown into the criminal justice system and um and luck and heroics rescued him from that nightmare after four years of off and on solitary um confinement and being shuffled to two state hospitals.

SPEAKER_01 12:38

Wow. So I mean, this this story, we could do 45 minutes on your story alone. So I'm going to uh and but there's so many questions about that. But since we're talking about housing that heals, can we bring it up to the modern time and your mission? And I want to hear Lauren's story. Absolutely. And I and I'm sorry, but it was based on all of that.

SPEAKER_02 12:58

No, I know it's no numbers are long, we get it. Based on all of that, that um once he was out of that, I was determined to see him in a community setting, out of a locked door as soon as he was able. Um, I have no problem with involuntary care if it's medically necessary, and it was, and um, it also was necessary to get him out of the criminal justice system. So, where did he go? Where was he gonna go after this lock facility? And that's when I started doing research and found out about this place called Synergy in Morgan Hill in Santa Clara, California. And um I will leave it there. My I'll I'll pass it to Lauren, who also has had that, the experience with Synergy, but I will say that Danny is currently living at Synergy. It was his first successful transition from a lock facility in 20 years. Um, he's been living at Synergy now for three years, um, and um has not been re-hospitalized, has not, you know, um he's you know, he's living, he's living, it's a congregate kind of setting. Um it is it's it's paid for by the county because of his conservatorship. It's paid for by the Mental Health Service Act, um California's um millionaire's tax. Um, and um and he's doing great. And it's one, what I call um a gold star model of housing the heels.

SPEAKER_03 14:29

And I can't wait after we hear from Lauren to hear more about it. And um, maybe others listening are Facebook friends with Teresa, but she has the Danny days that she does on Facebook. And that is, those are so um so heartwarming, and he's so mellow right now. So I want to hear more about how the housing contributes to that.

SPEAKER_01 14:50

But Lauren Right. And then, of course, part of tonight's program will be how can we get more places like that in other states, which I'm sure is part of your mission because right now I'm hearing fairy tale. Just the end part. Lauren, um and thank you, Teresa. That's I'm so glad to hear he's doing well. Lauren, how about you? What would you like to contribute to this?

SPEAKER_00 15:12

Well, whenever anyone starts and at beginning to ask me questions, they say, Why are you so passionate about housing? Why is it with everything that has to be done that you're just keen in on housing? And that is because I've been at this for a long time. I have four four sons. Um, the oldest is 50 and the youngest is 43. The two bookends, the oldest and the youngest, um, have experienced some real challenges in their life. Um in 1974, um, we brought our son home uh from a meeting at Stanford University where they informed us that our son had a new term that we probably hadn't heard, but I actually knew a lot about it, and that was autism. But they said, we hate to tell you it's not called autism medically yet, according to the diagnostic and statistical manual that we're still going by, it is it is classified as childhood schizophrenia. And so um I worked really hard with the Association for Retarded Citizens, now called ARC, and everyone and people in the autism groups were just beginning to form, and we worked really, really hard to get a reclassification on autism into being a neurological disability, much like your um developmental disabilities uh that have mental retardation are. That there's a big chain difference between developmental disabilities and those with a serious mental illness, as you all know. I jumped into housing because we were very active to get our child the schooling he needed through the ARC in Northwest Harris County. And we also were burdened by the state. The state told us that they were now, and we've been working very hard, that they were going to open up the state schools. And the children and the adults that were living in the state schools were now coming home to the community. So we had a lot of work to do in a very short time. It was a two and a half year period of time that we had to work on this with a lot of other families, and in particular, five families. Um, my husband and I, and those families worked to uh form our own nonprofit called Reach Unlimited, that is still alive and growing today. They don't even remember who we are. It's been, it was over 40 years ago, but um it was remarkable, and that's where why I'm so passionate about this severe mental illness. We don't have, I haven't experienced the open arms and the funding that were laid before us. We did, as um a group, have to mortgage our homes for a short time, take a second mortgage out, while we waited for the state funds and the federal funds to come in. But the state funds and the federal funds flowed in to actually provide the housing. Um, we started out with uh one large group home and one day facility for the people that were living there and the people who are living in their family homes that could come. And today there are over last count, 10 group homes and over 350 apartments. I haven't been in touch with these people in a long time. Fast forward, we moved to uh about 14 years later, we moved to Colorado. I used my expertise in housing to um rescue um the center, the YWCA, which was the only center for for uh women and children who were just had domestic violence issues, and also homeless women who were on the street in in Pueblo. And um there again, there wasn't the there weren't the roadblocks that we now experience in California. The funding opened in an 18-month period, we were able to raise over uh two and a half million dollars, uh, which then brought in many other dollars with it. My son So, yeah, go ahead. Your son? My son today, my youngest son, has been everywhere that you have mentioned that your sons have been. He has been in flea bed board and cares, he has been homeless, he has been in very good facilities, but the moment he gets out of these facilities, he reverts back. My son is in a locked facility for the first time in his life. Hopefully, because he is conserved, um, he will be able to stay there long enough to actually benefit from taking medication and hopefully be able to kick the street drug habits that uh many people get into. The locked door that I'm worried about is the locked door that my son was in in a housing first situation. He was placed in his own apartment and he was given the highest type of uh treatment and care wraparound facilities available in our state. One is called a full service partnership, and one is called assisted outpatient treatment. And the police on two occasions had to actually go through those doors and get my son. My son was comatose on both occasions and brought uh to our county hospital. We are very fortunate because in our county we have a psych emergency hospital where my son was able to um actually come back to life. I mean, they actually brought him back to life um on two occasions.

SPEAKER_01 21:19

Well, you guys, you guys have certainly, you you certainly are living the shoots and ladders situation of all families. And we we totally resonate with your stories. And I would love to channel the rest of this um episode to how you did what you did. And you've mentioned it a little bit, but also, you know, Mimi and Mindy have other questions. All of us here, all five moms here, all five proud moms here are pretty advanced in our journeys. We've been through a lot, we've created a lot. There have been obstacles, and I'd love if we could focus a bit. On why we need housing, what's wrong with housing the way it is, what we can do for our loved ones, and especially thinking about families that are just more at the beginning of that journey. You know, what to fight for, how to fight for it, what do we need? What is housing that heals really mean? You know, what works, what doesn't work. So I think that's part of you know what we want to talk about. And, you know, honestly, I could have do an hour episode with each of you just hearing your stories. Um, but um Mindy, why don't you ask the next question and see if we can continue to focus this wonderful story.

SPEAKER_03 22:44

I I have Lauren, you mentioned, you know, that one of your children on the bookends has um had the autism spectrum diagnosis. And I have across the street from me a family with two children with autism. And the mother used to work at the autism society of Minnesota. And she said when she talked to families about getting services for their children, as often as a lot of us know, kids with developmental disabilities or autism also have mental illnesses. And so she said when she advised families whether to go to the mental health system or the developmental disability system, always go to the developmental disability system that you won't like the mental health system. So I'm wondering if you could talk a bit about that, because at least in Minnesota, and I'm guessing it's the same all around the country, there's you know quite a robust system of group homes and various housing situations for people with developmental disabilities compared to the dearth places with for people with mental illnesses. And could you comment on that, or how did that happen, or what can we do about that?

SPEAKER_00 24:05

Um there is the disparity between uh the services those with an SMI and housing receive and those that have autism or any other developmental disabilities is actually hardwired into our system in California. And I don't know whether how it is in all the other states, but the developmental disabilities organized a lot sooner, and they also had um many court cases that helped them out in our state. And there was the Lanterman Act, uh, which is actually hardwired into our welfare and institutions code, which brings a lot of money for housing, not so much for treatment if you are if you happen to also have a developmental disability and need mental health, need mental health. But for the housing, the disparity in our in our state right now is if you get like $9,900 a month for the most severe um cases on the development disability spectrum, and you get about $1,200 uh for this severe mental illness. Now there are other patches of money that all many counties put through. Um they we in California have the Mental Health Services Act, which uh taxed our millionaires 1%. So there's money that flows sometimes, but nowhere near enough to facilities. They in no case will they receive the amount of money that those with a developmental disability gets. So there's a disparity right there. That's why you'll find enough group homes and facilities for those with a developmental disability, but not that many for people with a severe, severe mental illness. Um, so I'm gonna pass it on over to Teresa because she probably has something she wants to add on this too.

SPEAKER_01 26:13

Um I think it's it's you're shaking your head. So I'm assuming Lauren has explained it pretty well. Um, Mimi, do you want to take the next question?

SPEAKER_04 26:23

Yeah, you know, I think something that needs to be drilled into the heads of the rest of the world is that housing is a component in mental health medical treatment that is indispensable. There's not any other disease where we have to consider housing as important as the actual treatment itself, because you know, we know for our kids it has to do with the stability of their treatment and all of that. And I'm j just wondering how ideology drives the disparity between people who have an illness other than serious mental illness and people with mental illness in terms of housing. Because my feeling is that it doesn't seem to be regarded as the important, important, the vital component that it is.

SPEAKER_02 27:23

So I think that the that ideology um and fiscal discrimination are are critically important pieces of of this this disparity. Um, this disparity uh in access to care and housing um and treatment. And and so um I think that there's this one size fits all narrative that you know that everybody can um can get well if they that can volunteer um to go into recovery to you know the recovery, I call it the recovery bubble, you know, everybody can, you know, um magically get well, just you know, just give them a house and a room and you know, everything's gonna be okay. Well, you know, my son had a house. Um, he had a room, and you know, it it wasn't working out here. Um, and it wasn't, you know, he you know, he wasn't going to lit survive here. Number one, um, there were multiple suicide attempts here. Um, we like you, um I think it was Randy, that we made the decision also not to bring our son home. Um we had him living with us many, many times. And um, you know, the final straw was when my my husband found Danny um with a rope in our garage. And it was, you know, I just couldn't let him die on my watch. And um so, so um the ideology, it's it it's something that infuriates me, you know, um infuriates all of us. It's unfair, it's discrimination, it's wrong. And, you know, we've just we've spent 60 years fighting this discrimination. And, you know, um we're we're sort of lumped into the big disabilities bucket. Um and you know, we have entitled, we have so so-called entitlements through um the eight the ADA and ACA, etc. But when it comes to people with grave disability who, you know, don't even know if they're ill, you know, um, there is no access to um the right door um at the right time. And and and that was that was my lived experience. That was our lived experience, is that you know, we just kept hitting all these wrong doors. And um, you know, so um, and I believe it was based on the the myth that everybody can um recover if you know if if they're given a peer and a room. And you know, I think that works for so many people, and I'm thrilled for them. And you know, but that's not working, that didn't work for my family, and the suffering was unacceptable. And um, and I know that it's a suff, it's suffering that's happening across my state and across my country. So that was why we went on this journey, and we had no intention of you know being on a podcast, you know, um, this is you know, being on a podcast talking about it or you know, presenting. We we presented this this paper now so many times because it resonated with so many people. You know, this is the sweet spot that families like ours, especially the older population, and Rihanna, you ask about, you know, the younger generation. I'm honestly, I can't even, I can't even think about the younger. I'm worried about, you know, moms and dads, our age, you know, that are worrying about what's going to happen when we're gone. And this is a question that I've heard asked in meetings for the past 20 years. And it's time to answer it. And um, and that's so that's really, you know, that's what our paper was intended to do was to start a conversation. Um, and and to, you know, um, it's an open source paper. It was, you know, we're we're not we're not housing providers. We are we we don't have our own organization, we're just two moms. And um, but we're we're telling a story um and and it's resonating with moms across the country. Um, and in and it's housing that nobody has been talking about.

SPEAKER_03 31:52

I was so impressed that you made it on to into the New York Times with your story. And I read about the two of you driving around California looking for good housing. Could you talk a little bit about that before you talk about the good housing? This process that you used, I just thought two kickbutt moms that got in the car, drove around, spent their time doing this research that you're now sharing, but talk about that driving around and some of the Yes, and and just for a time check, we have about 12 minutes left.

SPEAKER_01 32:24

So I do want to hear about that journey. I do want to hear about the paper and you know, tips, tips that you may have as well. So, yeah, tell us about that, about that journey.

SPEAKER_00 32:36

What got us in the car was that uh we had heard about some really remarkable places. And both Teresa and I were on the mental health commission of our county. So we had asked many probing questions of where the fund, how much money was spent for people who had a severe mental illness when they went into the hospitals. So we knew how much, how very expensive it was to keep people in situations. We want to go and take a look now at where are these best places? Let's go see them and let's ask them some questions. Let's ask them, how much does it cost? Who is on your staff? Where do you get your funding? One of our first places that we went to, of course, is privately funded. But this is the big wake-up call. It cost uh when we went in 2019, it was about $42,000 a year for families to keep their people there, to keep uh their loved ones there. Now that's almost out of the reach of everyone's pocketbook. But we then started to think we were beginning to see articles in the newspaper where that San Francisco had identified that it cost them at least $41,000. And that didn't even cut count the medical and the police emergency funds that there were were used to keep someone on the street.

SPEAKER_01 34:02

And this was to stay in someone's own apartment or in a group home. I don't understand.

SPEAKER_00 34:07

In the gutter to use to use the street and the gutter as your latrine, your private open latrine, that costs the city a set. Uh that costs to keep somebody on the street in a city, minimally it costs 41. Now we're getting estimates from San Diego and other cities saying, no, let's be realistic, it's more like $68,000 a year. Oh my gosh. On the street. Now, if you look into the jails, the jails are even higher. They're even higher to keep someone in the jail. So what we knew is how do we bring, how do we get the people in the public sector to realize they'll be much better off if they can duplicate and replicate these models in our public system? Because unless you are one of those multi-multi-millionaires, you are not going to be able to take care of your loved one in a humane and dignified manner for the rest for their life. Because many people don't, though medication helps many people, many people don't get completely well on medication, and they get relapsing and remitting periods in their life. So that's what drove us to see. I think initially we saw what about 22 places. We've seen even more than that now. And so I know we've shot on time.

SPEAKER_01 35:41

What were you looking for in for something to qualify as housing that heals?

SPEAKER_02 35:50

So the first place we went to was called John Henry Foundation, and it was it, and we just were blown away. And um, and I know we have friends and that have their loved ones there, and and so it was it was just we were blown away by what their outcomes were, what what the conditions were, but again, private pay. So um, so we we had no clue. We we left John Henry and we drove home. We're in we're in Northern California, this was Southern California. We drove home going, we have to we have to do something, we have to write this. And so that was the first trip we took. Um, and and so we decided that it had that we wanted to go to a variety of places. So we went to, we went to homeless shelters, we went to um uh an IMD, a locked IMD, we went to um an you know, we went to permanent supportive housing um uh providers. Um we, you know, we were trying to compare all these different places and we didn't really rate, we we tried not to give gold stars to to them like good or bad, because we need them all. We didn't want to like say, oh, that's a bad one, right? You know, so we came up, we we decided to use the Institute of Mental, um the Institute of Medicines Um IOM6 quality standards, which are the standards that are used um for hospital-based care. Um, and we thought, well, you know, why not use these quality, these, these um quality criteria for housing that heals? And it's just really kind of a guideline and a guidance. Um, again, you know, we're we're looking to go to go from scarcity to abundance. We don't have enough. We can't get people off the streets, out of hospitals, we can't get them out of jails. We need to think about not only the quality, but the quantity and how we can scale up this model um and stop the suffering. Um, and we've also we also need to talk about forever housing that heals. So you talk about Randy, your son not being able to stay. My son is not in a forever housing that heals um home either. And he is now wanting, he he wants his own place, he wants to move on, you know. But we know that if we put him in an apartment, he's gonna fall off the cliff again and it's gonna start all over.

SPEAKER_01 38:27

So we hear we hear story after story after story, and uh, you know, I know my son is like, he's just qualifying for section eight. I have to fill out the paperwork tomorrow, and it terrifies me that he'll get to his own apartment because he'll fall apart. You know, I we we've been there before.

SPEAKER_04 38:44

So yeah And that's the thing that I was talking about, where it just is not regarded as the integral piece of the puzzle that it is, and and this is the housing nobody's talking about, yeah, exactly.

SPEAKER_01 38:57

So let's in the last five minutes, in the last five minutes that we have, let's talk about what you found, what's in your paper, and is it possible for housing like this with the work you're doing and maybe with other people joining your project? Is it possible for housing like this to be accessible for people like I can't afford $68,000 a year for my son to, you know, I what can we all do in our own states, in our own towns? Or, you know, can we start by reading your paper? Like we know that housing that heals is so important. We've had International Clubhouse on the podcast. We've had representatives of a place, fellowship place in New Haven, like amazing housing, but their waiting lists are eight years long. So what did what works and what can we do to make it happen? I know that's a tall big question to ask, but that's you know, that's where we have to get to with this. So we want to know about your paper and what we can do.

SPEAKER_02 40:02

I think our paper was oh, go ahead, Lauren. Sorry.

SPEAKER_00 40:05

I just think we have to be heard, and I don't think we're being heard by the powers that be. In our state, we have over 15 billion, not million, billion dollars that the governor, Governor Newsom has put out to combat homelessness. Now, many of our, all of our children, maybe at one time or another, have been homeless, but the homeless type of uh facilities that they are building, they meet the HUD requirements. And the HUD requirements are they have to be housing, housing first, which and they also have to follow the harm reduction model. So if someone who has a serious mental illness also has a drug problem, harm reduction isn't going to work for them. They're all always, almost always in our state, the money is being given to scattered side housing. Um, and that housing, the facilities that we need are housing. They are housing, uh, but they are in what more like an enclave. Envision more smaller uh college campuses where you have housing where there is a community where the staff is on site. What we have to do is we have to get our behavioral health directors in our state, in our counties, we have to get those who actually run these programs to understand that the scattered site housing, that putting somebody in an apartment all by themselves doesn't work because they lock the door. It isn't that there aren't case managers and treatment teams going out to see them, they're just not opening the door because in many of in their incidents, they don't have a mental illness, they don't want to take the medication, so we're just setting them up for disaster. And it is advocacy and getting to the powers that be and getting at our state at the state level that we need to work on. Uh, we're not a nonprofit, we we have no dreams of becoming a nonprofit, but we need um moms and dads and other loved ones to join with us and get our message to our state capitals and to our counties. In our state, it's at the county level that this happens.

SPEAKER_03 42:37

After the New York Times, did you get any kind of um feedback around the country? Was there any movement in your state, or did that fall on deaf ears? Because that's a pretty high platform.

SPEAKER_02 42:50

We've been invited to many tables and we we got a lot of it, we've got a lot of attention. It definitely resonated. Um, and you know, we've been very fortunate. We've we've developed partnerships here in in the state. Um, and and um we're we're all learning together, we're we're we're sharing, we're learning, and um, and you know, the chickens have come home to roost, and mainly because of lawsuits. And, you know, there's, you know, it's lawsuits, too many people living on the streets, too many people living behind locked doors, and too many people living in jail who are seriously mentally ill.

SPEAKER_03 43:29

And so lawsuits are needed. You know, before we go, I would like to hear since both of your sons are at synergy. I don't want us to run out of time before you describe synergy.

SPEAKER_00 43:40

My son is not at synergy. He was oh was he was, but he got him, he um actually brought drugs into the facility. I have a feeling, I'm not quite sure. Hip hippo does not allow them to tell me why he was told he had to leave the facility, but my son was there as private pay. Because when he was found comatose on the floor of his apartment, when we got him well enough, we couldn't put him back there. And that was the only thing that was available to us in our county.

SPEAKER_03 44:12

This drives me nuts that they can fall out. You know, they can charge him with crimes in the hospital, as you described. My son's had that too. They can be kicked out when they're desperately sick. My son has had that too. We don't do that to anybody else who's that sick. So, Teresa, I guess there is.

SPEAKER_02 44:32

I would love to share. I would love to share about Synergy. Um, I it's I'm, you know, it's been a dream placement for us. And, you know, I think that's the the secret sauce for Synergy has been the fact that they have a specialty mental health clinic that's right next door. And um there's a resonance, there's about 70 people. Danny does share a room, and that's not ideal. And that's, you know, I dream of him having his own room one day. That that's you know, um, that's something every adult male should have is their own room. And so that's that's housing that heals for me too. But so what makes Synergy so special is um is their therapeutic community model and their um hospitality model um and their clinical staff that is literally right outside the door. So instead of having to, you know, get in a car and drive to see your psychiatrist or you know, get on get on a teleprompter or whatever, telehealth, Danny can walk right outside the door, walk around, go upstairs, knock on the door, and say, Hey, Dr. Lily, you know, I'm I'm not feeling good today, or I'm this or I'm that. And so he has access to therapeutic supports that are literally right there. And they are um, and and this is a an IMD exclusion workaround model that um because they have a different, because the the clinical staff is separate from the residential staff, you could actually bill medical for this model. Um, and and that's because they have two different addresses. I mean, it's it's literally a workaround, but it's to me, it's the secret sauce. My son needed more than a peer. He loves his peers, he is a great peer, he's doing well, but he needed um ongoing, medically necessary continuity of care and um the support. And he's he's thriving um for the first time in 20 years.

SPEAKER_01 46:35

So um that's and and that's the that's the dream that we would all love to see. Yes. So in the remaining minute that we have, tell us how we can find out more about your paper and your mission. Where should we go for additional information besides the article in the New York Times? What can somebody do? So we have a Facebook page.

SPEAKER_02 47:01

Um, we we've secured a website, but we haven't even set it up for forever housing that heals. Um, we're we're thinking ahead, maybe. But um right now it's just um we have we have um housing that heals on Facebook. Um, and we also have a Gmail account, HousingThat Heals at gmail.com. Um And there's an on NAMI, there's a link on there as well. Our paper has been shared and there's several presentations we've given that are on that are online. If you Google um and Google us, you'll see um you'll see our presentations. Some of them have been recorded. We've been to several NAMIs across California. Um Treatment Advocacy Center hosted us as well. So um, yeah, so you can find links to our paper online and um and it was just again the start of a conversation that is absolutely necessary for us all to continue together.

SPEAKER_01 48:00

That's awesome. So final words round Robin and I I would just say don't give up the fight. Our loved ones, whether it's your sibling, your parent, I know it's a little harder when you're a child of someone with schizophrenia, but if you have a loved one with a serious mental illness, they deserve to have community and purpose and structure and and love and treatment. And if it can all be provided in housing that heals, don't stop fighting for that, I would say. Any other last words from anybody?

SPEAKER_04 48:34

Well, I would just say thank you for doing what you're doing because again, it's such an important component and it's not talked about enough, and people don't understand that. And I think that the the financial um model of this is really important too, if if um communities will understand that this is actually going to save them money to take care of these people. But again, we're we're fighting an uphill battle, but thank you for doing what you're doing.

SPEAKER_03 49:05

You know, for Mimi and my final word is one thing I found out that I didn't know that our listeners should know when you're dealing with a harm reduction program, you know, there's so much misunderstanding about HIPAA, and we have to explain to providers that they can listen to us and that they can in an emergency talk to us and so forth. The same with harm reduction. Harm reduction includes abstinence, and they don't uh seem to know that. Um, but if but my son needs abstinence just like yours, he can't deal with a little bit of anything, or he's off the rails. So for him, if he's in a harm reduction place, they have to, they can and they have to uh make sure he's abstinent. So that's another education piece we need to do. Absolutely.

SPEAKER_01 49:54

Well, both of you, thank you so much for joining us today. Keep up the good fight, I know you will, and love to your families, and thank you so much. Hey, thanks for joining us for this episode of Schizophrenia Three Moms in the Trenches with Randy K, Mindy Gryling, and Miriam Feldman. To get in touch with us or to learn more about our books, please visit our websites at MiriamHyphenfeldman.com, mindygryling.com, or randyk.com.