Eliminating Barriers to Mental Illness Treatment - Treatment Advocacy Center (Ep. 31)

Lack of involuntary treatment, hospital bed shortages, anosognosia, criminalization of mental illness, public service costs…

Where do we turn when we need to change the system of mental illness treatment? How to break open the barriers? How do we advocate for change?

The Treatment Advocacy Center is a national 501(c)3 nonprofit organization dedicated to eliminating legal and other barriers to the timely and effective treatment of severe mental illness.  

The organization promotes laws, policies and practices for the delivery of psychiatric care and supports the development of innovative treatments for and research into the causes of severe and persistent psychiatric illnesses, such as schizophrenia and bipolar disorder. The Stanley Medical Research Institute is a fully integrated supporting organization to the Treatment Advocacy Center. 

Ex. Dir. Lisa Dailey , Treatment Advocacy Center -

Lisa Dailey is the executive director of the Treatment Advocacy Center, leading an energetic team to improve state and federal civil commitment laws and promote evidence-based policies to positively affect those with severe mental illness. Lisa joined the Treatment Advocacy Center in 2015, bringing many years of nonprofit policy and advocacy experience. Her prior work includes the representation of refugees seeking asylum in the United States and many years of experience as a litigator in the areas of human rights and civil liberties.

1. Lisa’s personal story about why she advocates for people with serious mental illness
2. What are the main issues facing those with serious mental illness and their families? -
3. Why was the Treatment Advocacy Center (TAC) started? How has it evolved?
4. An inside glimpse of Dr. E. Fuller Torrey, TAC’s founder, author ofSurviving Schizophrenia
5. What has TAC had the most success with? (Thank you for your advocacy to ensure people like our sons could get COVID vaccines.) What has been hardest?
6. Tell us about TAC’s Grading the States. We’re from Connecticut, Minnesota and Washington.
7. What is TAC’s relationship with NAMI?
8. Recently hired a parent advocate, Kathy Day. What will she be doing that is new to TAC?

Links:

Twitter: @lisadaileyTAC

 Sign up for Research Weekly, new legislative Advocacy newsletter, more

https://www.treatmentadvocacycenter.org/

Who Are the 3 Moms?

Want us to cover a topic? Ask us a question? Facebook page @Schizophrenia3Moms

Randye Kaye -Broadcaster, Actress, Voice Talent, Speaker, and Author (“Ben Behind his Voices”)

Miriam Feldman – Artist, Mom, Author “He Came in With It”

Mindy Greiling – member of the Minnesota House of Representatives for twenty years. Activist, Legislator, Author (“Fix What You Can“)

Transcript

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SPEAKER_02 0:00

This is episode 31 of our podcast. And this one is all about eliminating barriers to the treatment of mental illness. And wait till you meet our guest. I've been waiting to have her on for so long. And Mindy, you made that happen. So this is great. This is all about the Treatment Advocacy Center. And you may have heard about it in some of our earlier episodes. And we certainly have spoken about AOT, especially episode 15, which had Eric's story. So we have hinted at this, but we've been waiting to get the executive director on, and we have her. I want to say welcome if you don't know about our podcast. We are three moms. We each have adult sons with schizophrenia, and we are authors and we're advocates and we're here to help. I want to thank Susan, who wrote a kudo to us and says, a friend of a friend recommended your podcast. I can't thank you enough. Can't thank them enough for doing so. Having made my way through every episode, I'm so grateful for what you three do. And she says she's shared with her family-to-family class, and she hopes that we have many more listeners. And we appreciate you for spreading the word, Susan. We uh we're up to 612 follows on our Facebook page and over 16,000 downloads so far, thanks to you. And all the episodes are here for you to listen. And if you want us to cover a topic related to schizophrenia in the family, you want to ask us a question, you want to suggest a guest, our Facebook page is probably the best place to do that. And you just go to at schizophrenia three moms, and the three is a numeral. But if you search schizophrenia three moms trenches, we'll will come up. So so welcome. Hi guys, it's been it's been since before Thanksgiving. So Mimi, um, how you doing? You just got practically off the Uber from Costa Rica. What were you doing there? And how are you?

SPEAKER_04 2:00

It was actually a short one-week kind of reunion with some friends. Every year we take a trip, and so that's what that was. Um, while I was gone, of course, uh the proverbial, you know what hit the fan at home. And first, the pharmacy gave Nick's caregiver the wrong medication, which is something that I didn't think was possible to happen. I thought that they have so many safeguards. She gave him, they gave him someone else, gave her someone else's medication. And um my god, when I finally was talking with the pharmacist who was sounding kind of calm about it, but I think he was um covering. I said to him, Aren't you freaked out? I said, You gave him someone else's medication. Didn't you see it's a wonderful life? You can't do that. And um sorry for laughing. Yeah, I don't think he got my reference, but do you think it's a wonderful life? And he said, Yes, yes, I know this is very serious, but uh, I don't think they've gotten to the bottom of it. So that was scary. And then all his meds were filled by a different pharmacy who left out some of them. So that was a problem. So, you know, anytime I go away, there's always something, but he's okay, and um, I'm back. So onward and upward.

SPEAKER_02 3:27

Moving forward, welcome back. And we're we're pretty fine over here. My son is working on uh counting up the days again of um clean and sober, and and we're getting there. We're getting there. It's over a month now, so that's wood. I'm knocking it. Mindy, how about you?

SPEAKER_03 3:45

Well, I didn't like to hear Mimi's story because um Roger and I are going to be in the Caribbean um out for a week at the end of December in a couple of weeks. And I hope our pharmacist does a better job than than uh than your son's Mimi. Um, but right now uh Jim is doing really well. And in since the last program, our big aha is that Jim finally got it into his head that using marijuana causes his breakthrough psychosis. He's been thinking it's because he's working on transitioning meds, getting off his other antipsychotics and only having clozapine as a long-term goal by hopefully January or February. So he thought that was what was causing these rough patches. But no, it's um Dr. Leitman, his psychiatrist, pointed out that marijuana causes breakthrough psychosis. And Jim decided to try it. And when he stopped, he hasn't had any of those big symptoms. The last one he had lasted 40, that's four, zero hours. So I'm here to say um, you know, marijuana is dangerous for developing minds, but at least for our son with his schizoaffective disorder, it's dangerous for someone who's been sick for a long time as well. So we're discovered that thanks to his psychiatrist. And hopefully then that will carry him over while we're gone at the end of the month.

SPEAKER_02 5:14

So well, that's huge that he discovered it himself. So here we are going through the ups and downs of the roller coaster merry-go-round, ski lift, whatever you want to call it, that we're on. But here we are to tell the tale. And Mindy, I'm gonna hand it over to you since you orchestrated this guest, and I'm gonna let you do the introductions and bring her on. All right.

SPEAKER_03 5:38

Thank you, Randy, and thank you, Lisa. You can come on anytime now. And I think all three of us are equally excited that you are here. Um, I just have been such a fan of the Treatment Advocacy Center ever since I worked with them long ago when I was first working on some legislation in the Minnesota legislature on improving our standards for civil commitment for earlier care for people like my son. And um, I know you've been with them for since 2015, and now already you're the executive director. So hooray for that. Thank you. I'm we'll let you tell about the um the treatment advocacy center, but I just wanted to say that um that you have when before you were at the treatment advocacy center, you had many years of nonprofit policy and advocacy experience, and including representing refugees seeking asylum in the United States. I just think that's such a applaud moment for someone who does that kind of important work as well. And then um, you were a litigator with human rights and uh civil liberties. And um also I'm excited that you are a fellow Minnesotan along with me, and you went to um for your uh BA to uh uh McAllister College, which one of my cousins went there. Our granddaughter has visited, and I don't know if she'll end up going there, but she loved it. And um then your your um next degree, your JD law degree was at Hamlin um University, Hamlin Mitchell Law School now, and that's right across the street from where my husband and I and our family church where our kids were baptized, and so that's right in the neighborhood here as well. And then you have a master's in law from Oxford, pretty um, pretty well qualified for everything that you do. So tell us about uh yourself, first of all. I noticed you minored in psychology for your first degree, and I did, and that's always to me a key. Somebody has personal experience. So could you tell us about yours?

SPEAKER_00 7:54

You know, honestly, the psychology degree is sort of like in hindsight, it's it's it's well suited to what I do, but it was actually not something that I knew I would be having such a use for in my life. Uh, it was really a topic that I I took an AP course in high school and I thought it was fascinating. So I just started studying that in in college. So it was very like I had nearly completed my degree before it became uh, you know, part of my life on a day-to-day basis when my sister had a psychotic break. Um, so that's kind of my relationship with psychology, is sort of I found it a fascinating topic, and then it became part of the fabric of my life. Um and definitely I was glad that I knew as much about it as I did when it was really necessary to know about it, but it's sort of just a coincidence.

SPEAKER_02 8:39

Can you tell us more about that story with your sister? I mean, was that the reason you do what you do? Um, there may be listeners, by the way, who don't know what Treatment Advocacy Center is. So that's going to be our next question. But we just are always interested in why anyone gets into the field. So tell us more about that.

SPEAKER_00 8:56

Yeah, and I I guess what I would say is that it isn't necessarily, it's not necessarily that the experience that my family had led me to do this work immediately, but it kind of led me to be there inevitably. And if I really look, you know, in hindsight, when I look back at the different steps of my career, they're all really suited to going directly where I went. So, you know, getting a law degree, working in human rights. I mean, I do very much see, you know, the issue of getting appropriate treatment to people with severe mental illness as a human rights issue. Um, so I mean, I really do see it as like every step of my education and all of my work kind of brought me exactly where I am. And what, you know, my my story with with severe mental illness is that um, you know, my younger sibling, so she's three and a half years younger than me, um, has sort of she's somebody who had like a really um difficult adolescence, and we didn't really realize what it was. It was obviously in hindsight, the padromal phase, um, but we didn't know that because we didn't have any reason to suspect that that's what it was. Um, and you know, as probably all of us know, it doesn't really look like what it is until you're looking at it in the rearview mirror. Um yeah, and then so when I was, let's see, she was 20, so I would have been, you know, about 24 uh when she experienced a psychotic break. And it was really obvious what we were looking at, and that in hindsight made everything else a lot more obvious as well. But I mean, I can very clearly remember going to visit her in her, you know, she was living in an apartment in Minneapolis. I went to visit her. She was sitting in the dark wearing sunglasses, watching C-SPAN, and that is not a thing that she would normally have been doing. Um, and she was saying that they were making decisions about whether or not she would be allowed to sell acid. So my older sister, who was also there, we looked at each other and we knew what we were looking at. And it was really, you know, I mean, we uh we went through a very long period of time of um of her being treated inadequately, um, undertreated. Um, you know, she's not a person who refused to take medication, and somehow or another that didn't help all that much. Um, and then what really got me sort of connected with Treatment Advocacy Center is really a Google search that happened because I we I'm from Minnesota, as Mindy said. And so, like I lived in Minnesota. My my family is actually from western Wisconsin. So I watched her go back and forth over the border many times over the course of about 20 years, and I could see that the difference in her treatment outcome really was about which state she was in when she was hospitalized, because the laws are different in Minnesota versus Wisconsin. And it took me a really long time to put that together because I guess I always thought now this is sort of a Minnesota pride issue, but I sort of always thought of our healthcare system as being a great healthcare system, you know, where the state that has the Mayo Clinic and all this. So I always assumed that the care was better in Minnesota. But the more that I saw what happened, what I saw was that it didn't really matter what the quality of the care was if the laws didn't allow person to be, you know, entered into treatment. So, you know, I mean, I watched my sister go to the emergency room in Minnesota 16 times and never be admitted beyond, you know, she would get maybe would be admitted for a 72-hour hold and she never made it any further than that, um, which is wild because that's not what would happen if she went to Wisconsin. Um now, Minnesota's laws are have been amended since, you know, since my experience, but I know that the experience is not all that different. Um, so you know, really it just, you know, I would Google, you know, kind of keywords that were trying to help me figure out, you know, what is going wrong here? Why can't we get appropriate care? And it pretty quickly brought me to some of the reports and research from Treatment Advocacy Center. So I signed up and I've been receiving those reports and newsletters and what have you all the way, you know, through the time that we were grappling with the different issues with my sister. And then when, I mean, she's she's stable now. When I was in a position where I was kind of looking for the next step in my career, there was a posting at Treatment Advocacy Center, and I jumped at the opportunity to be part of that work. Um, and I've and I've been there ever since.

SPEAKER_02 13:18

So how thank you. How did you how would you explain what treatment advocacy center is to someone who doesn't know you went there for information and you wound up working there and now you're executive director? So that's your story. But we have many listeners who are at the beginning of this journey, as you were with your sister, going, How do I get support? How do I, you know, what what can Treatment Advocacy Center provide for the families that they're not getting? And what what kind of work do they do? Why was it started? Tell us more about the the center itself.

SPEAKER_00 13:57

Well, so I'll I'll tell you first what it does and you know the kind of work that it does, and then I'll tell you a little bit about the history because it's you know the history is really interesting. Um, but the so like what the the organization focuses on a few different areas and they're you know, they all interrelate in one way. The point of the treatment advocacy center is that our work focuses only on severe mental illness. So the point is that we don't focus on anything that is, you know, broader. We keep our focus very narrow because we know that nobody else does. So, you know, basically some nobody else is looking out for only this population. So that is what we do. I mean, obviously families do too, but of the advocacy groups, a lot of them, you know, kind of get broader and broader and broader. And we just have made a decision that we will not do that. We are only going to focus on this very neglected and underrepresented group. So uh of the, you know, it some of the there's kind of two main things that started out as being the initial focus of the organization. And one of the one of those is the advocacy side, and most of it really was around seeing different um programs develop around assisted outpatient treatment. So that's kind of our like our big program that we promote and provide technical assistance for is uh to provide you know technical assistance and to educate people about the need for it and what what you do, like why that's a necessary tool to have in your palate if you're going to improve the lives of people with severe mental illness.

SPEAKER_02 15:27

And I'll tell you across the nation in any state, right? Okay, right.

SPEAKER_00 15:31

And I mean, we do, you know, we we certainly have concentrations in different states where we have like clusters of lots of states, but we really do um have programs in, you know, I think right now we've the the team for implementation is working in like 40 states, you know. Brian has flown to Guam to help with technical assistance. Well, we'll go anywhere. Um and then like another another kind of big tentpole that we have is um kind of research around specific issues related to severe mental illness. And one of those is, you know, we've we've done studies that are about clozapine use um to kind of identify, you know, that, you know, hey, this is the gold standard, who is using it, why is it not used more? Um, we use that as a predictor, you know, like a lot of times we'll use clozapine as um as a bit of it. This is evidence that we use as to whether or not a system is is actually functioning as well as it could in in terms of how it serves people with severe mental illness. Um, and then a lot of our our research work is also around beds and the the dearth of hospital beds that are available and the impact that that has on different communities. And that's definitely something, you know, we we get tons and tons and tons of media requests about that information all the time, because uh some of the initial research that uh Treatment Advocacy Center did has done is to kind of identify what the needs are per 100,000 in population for, you know, this is how many beds you need to properly serve your community based on our research. And it's here's what you have. And not surprisingly, like nobody has anywhere near enough, but definitely having those numbers available is really helpful, especially just in terms of putting things in context for reporters and talking to lawmakers to kind of help them to understand that connection. I don't think that they do understand that connection very well, but we certainly do keep trying to get them to understand like why that is a driver in needs within the rest of the system. Um, and then beyond that, I would say we've also gotten to the point where, you know, as Mindy mentioned, we we work with state lawmakers and we work with family advocates all over the country to kind of improve civil treatment laws, um, civil commitment laws, to make sure that the standards that are in place in a state are actually enough and are actually designed to get people into treatment at the time when it is the most likely to be beneficial.

SPEAKER_03 17:48

And uh, I'm gonna kick it over to Mimi in a second because so she can ask one of the questions. But um, I just will say working with the Treatment Advocacy Center when I was trying to improve the Minnesota civil commitment standards was such a luxury. I had at my beck and call all the staff in the legislature, all the lobbying groups, and still I got my answers to my questions and response from the treatment advocacy center better than anyone else. And the executive director of the time even flew to Minnesota, you know, testified at our hearing. It was it was incredible. Um, before uh Mimi's question, I just want to ask: is your sister on clozapine? Does that work for her?

SPEAKER_00 18:29

She is on clozapine. And I I can tell you that she she was not on clozapine for about 20 years, and we were begging her different psychiatrists over the years to try something else because she was under-treated. And when they did, there she was again. And uh it's one of the things that makes me really, really angry is that, you know, why why was there such reluctance to try this? Because it made a huge difference. And, you know, really, it's like I recognize that clozapine is a fussy and complicated drug. That's not an excuse. That's a that's a that's a dumb reason not to use the best drug.

SPEAKER_03 19:03

You'll get no argument from any of us. And Mimi, I'm sure, will not argue about this at all. Mimi.

SPEAKER_04 19:09

No, as a matter of fact, I have to say something about that before I ask the question. You know, I have had the similar experience with my son. It's like he's been sick for probably almost 20 years now. And I, by hook or by crook, found Dr. Robert Leitman in upstate New York, and he has brought Nick back to us. Same thing. It was just a matter of months, and it was ah, there he is, nice son. And um, for anybody listening who's interested in this, Google or go on Amazon and look up Robert Leitman, L-A-I-T-M-A-N, because one of the big um stumbling blocks in getting clozepine out to patients who need it is the complications in administering it. And Dr. Leitman has come up with a protocol that is phenomenal, and he offsets so many of these side effects and things so successfully that the kids that he gets on early, early intervention, these kids are back in college. They're back, uh they're getting married, they're having lives. You know, not everybody, but it makes me angry too. My son was sick for 20 years before we found this. And I can't help but lie awake at night and think, what if we had gotten this when he was 17?

SPEAKER_00 20:31

Yeah. I mean, and I'll just, you know, I gotta say, I'm a sibling and and not a parent. So for me, the experience that is like just as motivating to me as my as watching my sister suffer is watching my parents suffer and lose hope and uh have to give up their careers and um just to be there. And uh, you know, I mean, they they are raising her son. It's it's just one of those things that uh, you know, I mean, just under treating somebody for 20 years, it doesn't affect one person, it affects the entire family system. Yes, absolutely.

SPEAKER_04 21:06

Well, my question for you is back in those times when we were reeling and not knowing what to do in the very beginning, um, one of the things that became my life raft was Dr. E. Foley Torre's book, um, Surviving Schizophrenia. And um, I I really think that that wealth of information and direction and understanding changed the trajectory of our lives and of Nick's life. And so I'm just curious, can you give us a glimpse inside of Dr. Torrey, uh, who is the founder of the Treatment Advocacy Center for people who are listening? And um, is he going to do another edition of surviving schizophrenia? He's done three.

SPEAKER_00 21:51

He's uh there's actually been seven, um although but there, but some of them are more different than others are, and there's an audiobook of it also, um, which I I have not listened to the audiobook, so I don't know how well it works. Because if you know how the book is laid out, it's hard to envision that as an audiobook, but it's like a textbook.

SPEAKER_02 22:09

It's more like a textbook. But every thread is a good idea.

SPEAKER_04 22:17

Because you need it. Yeah.

SPEAKER_00 22:19

Yeah. I mean, so I mean, as far as Dr. Torrey, I will say, you know, I I first learned who Dr. Torrey was in college when because they showed him in a video in one of my freshman, you know, psychology classes. So I've known who he was for a really long time. And when I put together who he was with the fact that that's Treatment Advocacy Center, it made me feel even better about following their work because I think he's brilliant. I mean, he's he's such a compassionate person and he's a family member. So he really understands it. I mean, he's a sibling. He watched the same, you know, problem with his si with his sister, and you know, watched how that was difficult for his mother, watched how, you know, at the time it was uh, you know, considered the mom's fault for being a you know cold and reserved mother was the the the way of looking at it at the time. Um, so I mean, honestly, what I'll say about Dr. Torrey is that he is a very warm and compassionate and very funny person. He's just a rascal who's got a twinkle in his eye all the time. Um, and he's uh Mindy's met him, so she she can attest that he really is just uh a lot of fun to talk to. And he's he's very knowledgeable on so many subjects. I mean, if you look at his list of books, there's plenty of them that are in this field, but there's all kinds of them on other subjects that you wouldn't think, you know, it's like, wow, how do you know about Ezra Pound? That seems unrelated. But he's uh but he's he's great. And you know, one of the things that's wonderful about him is that he's he's always willing to, you know, he will he he's he suffers from Parkinson's disease, so he doesn't do as many uh appearances anymore. Um, and you know, his voice can be somewhat unpredictable, but he will try to be in touch with people as much as he can to be a resource whenever it is possible. And when he thinks something's really important, he will, he will definitely still reach out to people and he'll still have conversations. Um I I don't know if he has any immediate plans to do another edition of surviving schizophrenia, but I do uh I do know that he has a book coming out in January that is actually it's called Parasites, Pussycats and Psychosis, uh, the unknown dangers of human toxoplasmosis. So he this is something that he's studied quite a bit uh as at the Stanley Medical Research Institute, uh, where he's a research director. So he he has done a quite a bit of research about the the role of infectious agents in possibly the being a causal agent for schizophrenia and bipolar disorder. So this is going to be sort of a curation of that research and kind of a discussion about what they're what you know what supports the idea that infection may be somewhat related to this. And you know, currently in the pandemic, this is really of interest because there have been a lot of notable cases where people who have no history of any kind of mental illness have developed psychosis when they have been infected with COVID. So there's there's a lot of interesting things that we may be able to, you know, take from this awful tragedy of the pandemic, and maybe we can make a leap forward with our with our medicine for people with severe mental illness and with schizophrenia in particular. So this is a very, it's a very like big opportunity for us to try to make some lemonade out of all these lemons.

SPEAKER_02 25:25

That's amazing. I'm going to bring this around for a minute because this is, I mean, and and what an asset to the world, Dr. Tori is. I I want to bring it back around to the families that are listening that are lost. And from your website, I pulled this Treatment Advocacy, Treatment Advocacy Center, nonprofit organization dedicated to eliminating legal and other barriers to the timely and effective treatment of severe mental illness. I thought that really sums it up. So you promote laws, policies, and practices for the delivery of psychiatric care and supporting the development of innovative treatments. And yes, yes, yes, yes, yes, all these three moms say. So can you say more about that? And what can a family in legal crisis do? How can they reach out to the treatment advocacy center? Who do they speak to? Where do they begin? What sorts of fights are you fighting? And I know you didn't really get to say why uh Dr. Torrey founded TAC, but throw that in there. But I'd like to really keep the focus on the families and how they can work with TAC to help remove these legal and other barriers to effective treatment.

SPEAKER_00 26:50

So I will say that the the organization has always had as, you know, one of its, I mean, the basis of the of the organization and the reason why it exists is because of family members and family members that are affected by severe mental illness. And I would say, you know, we definitely consider ourselves representing those with severe mental illness, but we also consider ourselves probably even more to be representing the families of those with severe mental illness who are struggling to get care. So as a result, we've always been, you know, re people reach out and they they reach out with individual cases, some of which are within, you know, kind of our area of expertise and some of which are not. The organization has over the years always had, you know, kind of a policy of having different advocates answer those different calls. But what we've done recently is we've we've actually um hired someone who is going to centralize that response. And that person is Kathy Day, who is a family member and who uh probably some of you know um who are listening. She is a fantastic advocate based in Sacramento. Um I can't speak highly enough of the way that she's able to be compassionate and resourceful and helping people kind of navigate things. So the way that that works for a treatment advocacy center is we have a helpline that you can reach by phone or by um email, or you know, we will receive Facebook messages sometimes. Sometimes people will tweet things at us. Those requests will basically go to Kathy for the first level of, you know, kind of triaging and kind of figuring out what is the question, what do we need help with? And then she will get in touch and she will reach out, she will offer resources, maybe help troubleshoot, think about different ways. A lot of it really does involve, and because I've done plenty of these calls myself, a lot of what it involves is explaining how the system is supposed to work and then trying to help figure out where it's breaking down and what your options are to try to make it work the way it's supposed to work. And sometimes all we can do is tell you that you need to change your law. Here's how you would do this. You um, you know, like I mean, it definitely is the case that we, you know, we sometimes identify that you're like your system is just not working. You this is what you should continue to keep doing and you should keep demanding this. But we do also make sure that people know that sometimes you have done everything that you can do. And that's important for people to know that it's not that you're doing it wrong. The system is the problem. It's not that you you haven't figured out the secret door to get into the system. It's that that door doesn't exist. You, you know, like maybe you can climb in a window. Um, but that's that's part of what we do. And then, you know, we follow up with people, we encourage people to tell their story if they're in a position where they're ready to do that, because you know, a person in crisis is not really ready to be an advocate, but we do, you know, want to can we want to continue having you know an ongoing relationship with people so that when they're ready, they can share their story because the stories are basically our most powerful weapon against our broken system. Um, but that's kind of what we do. And then, you know, we're we're also in the process right now of designing a family resource center, hasn't launched yet. It's gonna be part of a new website design that we're working on. But Kathy's gonna be part of that. We're gonna be working on that with Eric Smith also. And it's gonna, it's going to sort of centralize a lot of the resources that are specifically for family members and then create a bunch of new resources. So we're gonna be having things like explainer videos that are shareable so you can show, you know, we'll we're anticipating that you know there's gonna be a video that actually identifies, you know, this is what anasygnosia is in a video. I can send that link to anyone who needs to understand what it is. And these are all things that I think we definitely, you know, as family members have wished that we had or had access to. Some of it is a question of, you know, I need to learn more about this. I need to understand what I'm seeing and what's going wrong, either about the illness and what to expect from it, or about, you know, these are common issues that other families have faced in trying to get a non-responsive healthcare system to do something to help their loved one. Um, so that like we'll we'll really be focusing on making more resources available for that audience in a way that we haven't as much, you know, we haven't done that as much before because so much of our work was focused on, you know, really just charging forward and changing laws. But I think, you know, we really have made a decision that we're going to commit to making resources available and really being the resource for family for family members that we know that they need.

SPEAKER_03 31:17

I think that's really important. And, you know, even when before you started all this focus on the family, just recently that you're talking about, even focusing on laws. When I was working in the legislature, we were able to remove the word imminent from the civil commitment law. We we counted property damage. If the family member was punching holes in the walls or breaking windows, they could end up being able to be hospitalized. But the way we passed those things, even then, 20 years ago, was while families were working with us. We had families all around the state. And I sent anybody who contacted me information from the treatment advocacy center. That family focus and focus on the problems that people with dealing with serious mental illness have is so important that the Treatment Advocacy Center does. Um and Nami and uh Randy teaches family to family. I'm the president of my county affiliate for NAMI in Minnesota. Um, and they are a wonderful organization, but they are very spread thin, trying to cover everything. So to have a group that just focuses on serious mental illness, I think is really crucial. So thank you. Um, Mimi, do you have another question? We're short of time. 10 to 20, 10 to 15 minutes left. Randy has just let us know.

SPEAKER_04 32:41

Okay. Well, I'm I'm also wondering what other mental health groups do you work with most closely with, um, for example, what's your relationship with NAMI?

SPEAKER_00 32:53

Well, I mean, we we will work with anyone who has the same goal, even if it's on a particular issue and not on other issues. So we definitely, you know, we certainly do partner with NAMI. I mean, obviously, as you know, that their NAMI groups are all very much like individuals. So, you know, there it's not like there's a particular it, you know, every state has several NAMI chapters. Some of them do certain things that we might work on and some of them don't. So what we've what we kind of do when we go into, you know, the a state and we're going to work on a bill or we're going to, you know, kind of work on a policy is we always reach out to the NAMI group and see, you know, if they're receptive to partnering with us. A lot of times they are. We have great partnerships with a lot of different NAMI groups. Sometimes not, you know, sometimes that's either like not really their focus or they have, you know, there are definitely NAMI groups that don't really have uh, you know, any interest in partnering with anyone on involuntary treatment issues, which is, you know, that's one of the things that Treatment Advocacy Center is willing to actually be a standard bearer about the need for involuntary treatment in some circumstances. And there are some groups that don't really want to touch that. Um, but we don't really feel like we have that luxury. It's just it's a part of, it's a part of what might be necessary, and it needs to therefore be necessary for some of our loved ones at certain times. Um, but we, you know, I would say on the state level, we'll work with really any group. Uh, we certainly do partner with family members very frequently in terms of uh, you know, putting together grassroots networks in order to come and give testimony, which um really is amazingly effective and you know, kind of identifying a bill sponsor that they can work with, uh, making sure that people know when they can submit testimony and writing. And now in in this day and age, you can do a lot of testimony by Zoom, which has been fantastic for getting people access to their legislation, uh, which is great. Um, and then at the national level, I mean, this year we've actually done quite a bit of um partnering with MHA on some of the issues that um relate to you know schizophrenia and COVID, uh, because that's one area where, you know, we there's lots of stuff that we don't really agree with MH on and MHA on, and they don't really agree with us, but we all agree about that, that that was, you know, that that was discriminatory, that people were ignoring the needs of people with schizophrenia and their very high risk due to COVID infection. So we work, we partnered with MHA, we partnered with Clubhouse International to do a study uh in order to kind of identify like what are good practices to increase vaccination rates for folks with SMI. Um, and we have been working at the national level on kind of codifying some good um consensus points about the 988 implementation that's going to be rolling out in July.

SPEAKER_02 35:32

And with that 988 implementation.

SPEAKER_00 35:35

So basically, um legislation that Congress passed is going to be transforming the national suicide hotline to a three-number 988 number. So the basically the idea is that if you're calling about psychiatric crisis, you don't call 911, you call 988. Um, and that's a great idea. Um, what that looks like on the state level, like there are really are no um no requirements for what that's going to look like. Um and there's a recognition amongst um a lot of the people who like kind of really study these issues that if you only create a number and all it does is triage people to the same services that have already led to uh over-reliance on 911 and law enforcement, you're gonna actually have worse results than you had before. Um, so there's been a lot of work around putting together, you know, kind of a consensus about what that needs to look like if it's gonna work. Um, so I have worked on uh a document probably most closely with Wellbeing Trust, have also worked on it um with uh with MHA, has provided a lot of feedback, NAMI's provided a lot of feedback, and then it was vetted uh by 16 different organizations so that we, you know, and that was a long and exhaustive process to get 16 CEOs all on the same page. Uh but we did actually develop a document that is a consensus document of like all of the big mental health advocacy groups saying, hey, lawmakers, if you do the things that are in this list, you have the backing of the mental health advocacy industry behind you. So, and we thought that was important because we we wanted lawmakers to be able to figure out what this needed to look like if it was gonna work. I mean, it's it's a great opportunity. There's money flooding into the mental health system right now because of this very large appropriation from Congress. This is a great opportunity to fix things that are wrong with the system because coincidentally the crisis response system is the mental health system. So if you fix one, you're gonna fix them both.

SPEAKER_02 37:32

So that gives us a snapshot of some of the issues, the 988, the you know, how to spend the money well for mental health to improve the system, involuntary treatment. So I hear all of these. You also mentioned early on the difference between Minnesota and Wisconsin. So I understand you grade the states. So, and and by the way, many of the things you mentioned for our listeners, we you will we do have earlier episodes on Clubhouse International. That was our last episode. We are doing an episode next week on suicide with one mother's story in particular. Uh, we have done things on assisted outpatient treatment. Eric Smith, who you mentioned, was one of our guests. So I refer you to all of our other episodes which are available. Just uh search on them and find the ones that will give you more details on the things that spark your interest. But I know when we studied AOT, I happen to be in one state that doesn't have it. So talk about grading the states. We're Connecticut, Minnesota, and Washington. Uh, although Mimi goes all over the place, so I just count her as multi-state jewel or something, but but that's where Nick gets his treatment, correct? The state of Washington. So tell us about grading the states and how our states are doing.

SPEAKER_00 38:56

Well, uh, okay, so uh a qualifier is that grading the states grades the statutes. So I will definitely always put that qualifier in there because as people in Minnesota know, Minnesota has an A grade, but the quality of care there remains very patchy. And, you know, like there are still some really horrible outcomes in Minnesota that are absolutely inexcusable considering the tools that are available under the law. So I just want to be really clear that there's a very big difference between assessing a state's grade on what is possible under their statute and what they're actually doing with it, which is a separate issue. And we do work on that issue too, but grading the states, you know, because I'll tell you one of the things that always happens when we put out a grading document is we get a lot of people who are terribly upset because they think that their state's grade is too high. And I understand that because you know, definitely, you know, when I, you know, when I when I look at it, it it can look very strange. So I mean, like Minnesota gets a great grade because they just did this new iteration of their law and it fixed a lot of stuff that was problematic with it. Now we have to get them to use it. But you know, we we love Minnesota's law, it's fantastic in theory. Let's just hope that they actually start to use it in the way that they could under the statute right now.

SPEAKER_03 40:12

And and I can say that's not always happening. And the voluntary engagement uh part, which is for earlier intervention, is optional for counties. And as far as I know, one county out of 87 has opted in.

SPEAKER_00 40:26

Yeah, that's pretty that's it's always slow. It's those opt-in things are always difficult because nobody wants to go first. There's usually a gap of you know, two, three years before you start to see people do it. Somebody will actually do it and then they get great results, and then more and more people will do it. But it's and that's certainly how it worked in California with their AOT program. But it's it's always a little infuriating because it's just like, well, isn't this your job? Aren't you supposed to be doing this? But yeah, that's uh there's a lot of reluctance. It's always surprising to me that most of the reluctance comes from the departments. Um, because you wouldn't think you would think that they want the tools, but it's not not always the way that it works.

SPEAKER_03 41:05

So one county that opted in is the one that I'm in, and that's because our NAMI affiliate advocated with our county commissioners. So families make a difference.

SPEAKER_00 41:15

Yes. Well, and I hope that they're collecting all of their data because that will be very, very useful in getting other counties to do likewise. So uh what I'll say about Connecticut is that it it gets a very low grade. There really isn't any way for a state to get a good grade if it doesn't have AOT. So the the three usual suspects that do not have any form of statutory AOT available, which is Connecticut and Massachusetts and Maryland, um, you know, have I would say that Connecticut is a little better off than the other two because its inpatient standard is actually pretty good. Um the problem is just that it's a it's a continuum of care. So what I think, you know, Connecticut and Massachusetts maybe don't, and certainly Maryland, don't seem to kind of have haven't really put into their treatment philosophy is that you can do a fantastic job of getting somebody inpatient, uh, have them stabilized and then discharged. But for some people, that will always not be enough. Uh, because we we don't hospitalize people anywhere in this country long enough that they're actually stable when they return to the community. And if you don't have supports available to ensure that they're continuing to stabilize, which is really what AOT is doing, is to keep people stabilizing and developing habits and like helping people who don't necessarily have great insight to understand that, like, hey, my life is better when I do this, whether I think I need to do this or not. So I guess I'll keep doing it because that does start to sound better than you know what I remember of just the drama of not having my my adherence to medication be a part of my priorities. Um, so as a result, you know, Connecticut has, you know, I'll say that there's there's some stuff about Connecticut that is great. I mean, they do a really good job with people who are, you know, people who have been um hospitalized forensically. They have um good programs for returning people to the community. But I'll say, you know, what I say about those programs, um, because like so Oregon and Connecticut are Connecticut are kind of the two states that do like a really great job of that. And, you know, Maine does pretty well also on returning people under supervision to the community. That's great. But you have to commit a pretty serious crime to be eligible for those services. And that's obviously not what anybody wants. So that's why it's always frustrating to me when a state is like, well, I mean, we we do such a fantastic job. And I'm like, yes, but if you were willing to do any of that earlier on when it's a medical situation, then there's no crime victim. And the person didn't have to have a crime on their record either. So that's that's definitely how we how we look at it. And then as far as Washington, so I actually know Washington very well because it was one of my first states that I really, really got involved with. And Washington always has a of legislation. The legislature is really, really working to try to solve some issues, but they've got some pretty intransigent problems in in Washington. So we're going to have to see what they're able to do to kind of fix their issues with their workforce and their hospital. Because I I think that until they kind of sort some of that stuff out and they've just they've just invested a lot of money in kind of like a big systemic overhaul trying to kind of get at some of those issues and you know to try to create some of the infrastructure that is really needed. And I hope that that's going to make a big difference. And I have seen that there's a lot of you know there's a lot of willpower within the legislator to try to try to fix some of those things. I mean they recently passed a bill that was championed by Jerry Clark that uh would, you know, expand the amount of time that the that somebody's inpatient for stabilization purposes. And that will make a huge difference once that goes into effect. It's not in effect yet, but when it does go into effect it it will increase the amount of time that somebody has to stabilize. So what I'm seeing from Washington is they have the willpower to try to make an effective change, but it does run up against you know some of their intransigent like problems that they have that are some of that is infrastructure and some of it is treatment philosophy, which I mean that's that's kind of one of the biggest issues that we face is that all of these laws are implemented by individuals and some of them have biases and some of them won't use some of the treatment tools and some of them think you know like it it's it's difficult to get adequate treat for some treatment for somebody if um if you bring somebody to the emergency room and you have a physician who kind of won't ever consider that person to meet criteria unless they're literally you know trying to take a swing at someone.

SPEAKER_04 45:48

Sorry go ahead. Go ahead no go ahead maybe oh yeah you know um there's some great advocates working up here in California and coincidentally Jerry Clark is a friend of mine and she's going to be our guest next week on our show about suicide. She's fantastic force of nature that one.

SPEAKER_03 46:05

Well that's a good good note to end on. So we thank you Lisa so much for being here and helping us learn just a little bit about the Treatment Advocacy center and your work. And could you give us a preview? We have an upcoming program we haven't scheduled it yet but it's coming soon where we're going to have another person from the Treatment Advocacy center. We've had Eric Smith, we've had you and next we're going to have Sabah Muhammad and talking about her podcast. Could you just close this out with giving us a preview so our listeners can be looking forward to that program.

SPEAKER_00 46:42

Yeah so Sabah is actually she's our inaugural DJ Jaffey advocate. So this is something that Dr. Tori endowed for the purposes of kind of increasing our footprint of grassroots advocacy. And one of the first things that we decided to focus on is we wanted to expand the reach of our messaging which is both getting information about SMI and about things that you can do to help your families into communities of color in ways that we haven't you know like really done an adequate job of doing outreach and helping bring them to us so that we can share their stories, but also so that you know we can we can you know learn from each other and we can do a better job of having our advocacy be more representative of all families. So Sabah has been working on a podcast series that is going to be along those lines. It's going to be focusing on telling the stories of families of color uh and that's obviously an issue that is near and dear to her heart. Sabah is also a sibling she has a brother with severe mental illness and she really has embraced the the platform that we're able to give other families to tell what is unique about their stories and what is the same as what other families that you know that that we run into all of the time you know there's lots of stuff where that Venn diagram is very overlapping where like we all can kind of relate to the to the issue of seven of somebody going to the hospital and maybe not getting admitted but there's some very unique things that come along with being a person of color and maybe needing to call 911. And that's really what we want to get at and what Saba has really been focused on is just like giving giving that platform to families of color to talk about their unique experience with SMI. You know because you know there's there's lots of focus on mental illness there's lots of focus on you know kind of race issues and equity issues in mental health but this is going to be about race issues as they relate to SMI. And they are very very different than what you might see in in other aspects of you know mental health and mental wellness this is about mental illness not mental wellness.

SPEAKER_03 48:40

One time that I did meet um Dr. Tori that you mentioned earlier Lisa Sabah came along I had asked him for a testimonial for my book just sent him an email I think or a letter and he invited me to or you invited me to come and meet him and she came along as a new employee. And I remember in our conversation she said as we were freely talking about our family members that her mother would not be able to talk so freely with her culture about her brother. And that really struck me. So I look forward to that program forward to it too turn it back to you for closing out.

SPEAKER_00 49:19

And you're all going to love Sabah she is the most charming person you could imagine.

SPEAKER_02 49:23

Yes she is there are certainly a lot of issues and we I think we've gotten a sense of what we do. We have about 60 seconds left and other than thanking you I want to just give the last minute to you Lisa to uh say any links that you think our audience needs to know how they can get in touch with you and any last minute things that we might have left out that you really wanted to say and we didn't give you a chance to say um well I would just encourage everybody to either visit you know visit the website which is you know it's very long it's www.treatmentadvocacycenter.org.

SPEAKER_00 49:58

Unfortunately that's our emails too it takes forever. And then my uh my Twitter account I I try to to to tweet things as frequently as I can so that's Lisa Daily Tack and my last name is D A I L E Y certainly encourage people to sign up for our research weekly newsletter. It is fantastic to summarize some of the newer research we were we're actually going to be launching a new legislative advocacy newsletter. It's going to be coming out for the first issue in about a week. So that is going to be a great way for people to be staying up to date on what bills are active in their states, what's going at the federal level um so I think those are probably the best the best things to do because you sign up for those newsletters you'll have a sense of what we're working on.

SPEAKER_02 50:40

Awesome. Well thank you so much for your time today and your work which is so so important and so complicated. And thank you so much. Thank you.

SPEAKER_00 50:50

I really appreciate being able to work with family members. It's um I feel a real affinity for family members and it's it's I think everybody at tech really does most of us have that connection.