From Politics to Providers: Advocating for System Change in Serious Mental Illness - (Ep. 24)

“Mom, the voices are telling me I need to kill you right now.” - 

What can a parent do after hearing that from a child? 

How can we educate mental health providers so they really “get” what it’s like to have a serious mental illness, or to be a family   member of  a loved one who has one?

Ever wonder what you can do to make the mental  system better for others, even if you can’t help your own family member as much as you wish you could?

This episode is about those steps, to help make changes and fix what is so broken about the system. 

Welcome Leslie Carpenter: Mom. and….

Experienced Serious Brain Disorders Advocate working to fix the broken treatment system locally, in Iowa and nationally. Effective speaker for advocacy. Recently retired early from a rewarding 34 year career in physical therapy and management, to have more time and energy to focus on improving the quality of treatment for 11.9 million people with serious brain disorders in our country.

Keep spreading the word. Also join our facebook page @schizophrenia3moms

• Leslie’s family story with schizoaffective disorder
• Political Advocacy in Iowa - Meeting with Presidential Candidates and more
• NAMI Provider Training - how it works, and expanding it nationally
• solutions to fixing the broken, siloed treatment system for people living with serious brain illnesses
• anti-stigma campaigns
• The dream of creating psychiatric assisted living campuses - long-term housing solutions
• “Ripples Of Hope” advocacy talks 

LINKS: 

Advocacy talk to the City of Iowa City via Zoom this past spring, after she and her husband received an award from the Iowa City Human Rights Commission:

   https://www.youtube.com/watch?v=b0aO1TbwED0

NAMI Provider Ed:

https://www.nami.org/Support-Education/Mental-Health-Education/NAMI-Provider

Lwentworth@nami.org

NAMI Iowa video on Provider Ed:

https://namiiowa.org/provider/

Pete Earley:

http://www.peteearley.com/

Crazy: A Father's Search Through America's Mental Health Madness

DJ Jaffe obituary:

https://www.nytimes.com/2020/09/16/nyregion/dj-jaffe-dead.html

His book, Insane Consequences

Fellowship Place: New Haven CT

https://fellowshipplace.org/

International Clubhouse

https://clubhouse-intl.org/resources/quality-standards/

Transcript

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SPEAKER_00 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 Feldman, Mindy Gryling, and Randy Kaye. Welcome to episode 24. This is called Political Change and Provider Training, advocating for those with no fault serious brain disorders. We have a really exciting show tonight and a great guest. I want to start by thanking our listeners and subscribers. We are on all kinds of directories now, and we're starting to get some five-star reviews, which we very much appreciate. Mindy and Mimi, my cohorts, we're past 8,000 downloads. Our next milestone will be 10,000. So we're we're aiming toward that. But thanks to you, our listeners, we're getting there. So I want to thank anyone that has subscribed. Uh, our YouTube subscribers are growing as well. And I I want to thank a couple of our people who have taken the time to comment. Like Steph from South Florida on YouTube said, I'm so happy to find this podcast. It has helped me understand so much more about schizophrenia. Your stories give me strength, and I'm able to relay the info to my husband. Thank you so much for doing these podcasts. And that's yeah, right there why we do them. So thank you. And on our Facebook page, which by the way is at schizophrenia three moms, the three is a numeral. Feel free to follow and like the page. Janie says on one of her comments, I just want you all three to know how much you've meant to me. I found you fairly recently. It's like I have a few more friends who get it. So Janie's also writing a book. So we look forward to seeing that. And um April wrote to me and just talked about episode 23, the last one we did, where we all read from our books. And she just said this was a very helpful episode. And so we appreciate that. Keep spreading the word. Join our Facebook page, subscribe, click away, share. We love that you share this information with others. Before we bring on Leslie, we all know this is a roller coaster or as I call it, a game of shoots and ladders. We each have sons that are fairly grown and have schizophrenia. Let's keep our updates to under a minute, if we can, so we can get right to our guest. But uh, do you guys have anything to do to update regarding your books, your son, your advocacy efforts, anything new to report?

SPEAKER_03 2:39

Jim has a new psychiatrist who has motivated him to actually start walking on at least an hour five days a week. This has never happened before where he's been that motivated. So yippee.

SPEAKER_00 2:54

Okay. I will say that uh my son is, I promised I'd be taking him out for lunch at 40 days of um clean and sober. And I've been busy. So he's at 48 days now. So I'll be taking us out for his 50th day. And that since getting out of the hospital in February, this is very, very exciting. And we are working on getting his finances back in order. He's actually taking an online course in debt reduction and budgeting. And he and I spend time on the phone. He just reads the stuff out loud to me so he can kind of absorb it. He's getting like five out of five on every test. So that's always really good to know. And he's actually thinking about when he has money again, saving a little bit. So that's huge. That's huge. That's huge. We'll see if it happens, but you know, we live in hope. Mimi, happy. We can dream. We can dream.

SPEAKER_02 3:53

Well, I'm down in Los Angeles right now, painting a mural. So Nick's up by himself, basically, with his caregivers, but he seems to be doing well. And um, nothing really to report, which is usual good news, right?

SPEAKER_00 4:10

Yes, ordinary is a miracle, as we know. And I will add that you know, we do represent both coasts and middle America, and our guests will be part of that middle America, which I realize is about 45 states. I know middle America is a big thing, but uh weather-wise, Mimi and I on our east and west coasts are in like heat and humidity and air conditioning. Mine is off. So if you're on YouTube and you see me completely sweat by the end of this episode, you'll know why. Mindy is in a delightful, what, 65 degrees right now?

SPEAKER_03 4:42

63, and I had to put on a slight jacket.

SPEAKER_00 4:46

And we'll see where Leslie is. So welcome. I want to welcome our guest tonight. I I learned about Leslie through various channels, and then she sent me an email. She's a mom, and I took the time to listen to this incredible advocacy talk she did with the city of Iowa City after receiving an award from the Human Rights Commission there for her and her husband. Leslie Carpenter is an experienced serious brain disorders advocate. And like all of us, she's working to fix the broken treatment system, not just locally, but also statewide in Iowa and nationally. She's recently retired early from her career, 34 years in physical therapy and management. So she can have the time and energy to focus on what she's going to talk with us about tonight, the quality of treatment for the 11.9 million people with serious brain disorders in our country. Leslie, welcome to the program. Take a minute and turn on your video and unmute your mic. There you go.

SPEAKER_01 5:52

Thank you very much. Thanks so much for having me.

SPEAKER_00 5:55

It's an absolute pleasure. So I will share the link to your full talk in the description in the show notes. So anybody who wants to see and or hear Leslie's full talk, you can go there. It's on YouTube. But today we'll be focusing on a lot, the system advocacy, and also talking of something that I have taught in the past, but haven't taught for a while. NAMI's provider training and the efforts to expand the provision of that across your state, Iowa, really across the country. So I'm going to turn it over to Mindy to just kind of start the ball rolling with the first question, and we'll get your story out there. Mindy, take it away.

SPEAKER_03 6:38

Thank you, Randy. And I want to underscore what Randy said, Leslie. We're so honored to have you here. And just like Randy and Mimi, I have met Leslie Carpenter on Zoom as well, listening to other programs that you're doing and seeing you on social media with your wonderful advocacy. But I haven't met any of these wonderful three women that are on here with me tonight in person. So um, so we're all in the same boat, but I still feel like I know all of you just from um from being on these kinds of forums. So I we're I'm just so thrilled you're here. And also someone from a neighboring state. I am it's 63 here in Minnesota. What is it in Iowa?

SPEAKER_01 7:25

Depends upon where you were. About four hours ago, it was about 75 up in northwest Iowa. Now down here in Iowa City, it's I would say it feels like it's about 85 and muggy. Okay, so yeah, all it depends on the distance.

SPEAKER_03 7:39

But my question to get the ball rolling is tell us why you got involved in advocacy uh to improve the mental health system and for people with brain disorders, and especially at the state and national level. We all are of Iowa. So tell us about how you got involved and what you can do there.

SPEAKER_01 8:02

Yeah. So just like all of you, we have um an adult son who has a schizoaffective disorder. He doesn't have exactly schizophrenia, but he became sick when he was about 16. That was back in 2008. So it's been what, 13, 14 years of dealing with the very broken system and surviving that, both him and us. And along the way, honestly, it was pretty devastating to learn of all the causes of the broken mental health system, especially all the financial causes and policy causes, um, many of them really well-intentioned policy changes, right? But that turned out to be really bad. But it's really kind of appalling to me that, you know, policies that were put in place back in 1963, 1965 are still here, you know, decades later. So, what moved me into doing advocacy work was attending the NAMI family-to-family class. It really changed um my perception of what was going on and filled me with anger, honestly, the night that we heard a talk from Pete Early. He had come years previously, sometime at the Englert Theater in Iowa City and given a talk. And he talked about story.

SPEAKER_00 9:16

The anger?

SPEAKER_01 9:17

Tell me about that. Englert Theater.

SPEAKER_00 9:18

Um but you said it made you angry to hear Pete Early talk. Yes, it did.

SPEAKER_01 9:24

I wasn't angry with Pete, not at all. I want to make that clear. I'll go.

SPEAKER_00 9:29

I've met Pete and spoken with him, and I I know his story. He's also written in a wonderful book about the system. So, yes, go ahead.

SPEAKER_01 9:36

Yeah. So, what made me angry was learning the breadth of the crisis across the country, how severe it was, and also the reasons for it. That's what filled me with anger and rage. And it made me understand that our need going forward wasn't just to keep advocating for our son, but really to fix the system for all the future sons and daughters and moms and brothers and sisters, right? Because, you know, sadly, our son is very, very sick. And despite all of our efforts, he may not end up having a very good outcome. That's just the honest truth of it. And Nami Family to Family helped me to understand the need to let go of feeling solely responsible for that. But it also helped me to understand that even though I may not be able to do things directly to change his outcome, I can live with myself if I'm working on it for everyone, right? And making it better for the next family where this happens to them. So that's kind of how I got into doing this advocacy work. And we started pretty small and pretty locally. And if anybody takes the time to watch that advocacy talk, you'll see that we started out with just trying to change the admission process through our university hospital that's here right in town, because it had been kind of traumatic, not kind of really traumatic to our son and to us every time we had to go and try to get him admitted. And so we started small and wanted to change that. Um, and honestly, we had a meeting with them and walked away and thought, well, hmm, that went nowhere. And honestly, we never heard back from them. But three years later, they did open a crisis stabilization unit and it did improve the way in which people with serious brain disorders are managed in the ED getting to the crisis stabilization unit. It reduced the number of people that had to be admitted, it reduced the number of people thrown into the back of a cop car and driven across the state where they would just get turfed out, you know, 48 to 72 hours later, right? So it really did make a difference. And that was just kind of the beginning step of seeing that, you know, you can make a difference if you go ahead and roll up your sleeves and really fully commit to it.

SPEAKER_03 11:50

Success breeds success and everything moves slowly. Having spent 20 years in the Minnesota legislature, I know that three years pretty fast to get a change like that. So congratulations. Could you tell us a little bit about your advocacy that's special to the fact that Iowa has the caucus system where you actually are so early that you get real candidates and the power that I think you really use well for all of us in the mental health system?

SPEAKER_01 12:21

Yeah. So back in 2015, we were in the pre-Caucus time when Hillary Clinton and others were running for the presidency for the 2016 election. And that happened to be a time where our son was in a fairly stable phase. And I had this young man approach me at the farmer's market and say, Would you like to go ahead and consider committing to Hillary Clinton? And I said, Well, sure. And as I was sitting down and writing out the caucus card, you're not from Iowa, but they have you fill out a card and on it, it asked you, would you volunteer? Would you make phone calls? Would you do all these things? And so I walked back over to Carlo. That was his name. Um, and said, Carlo, I'd love to volunteer. I will volunteer a lot. Can you get me a meeting with Hillary Clinton? You know, because why not, right? Um, and that never happened, just to be clear. I never got a meeting directly with her. But what did happen was because we were volunteering, we started getting access to her in the meet and greet rooms that would happen before and after events. And we started meeting a lot of the local politicians, the local Democrats. And I happen to be a Democrat, but I want to say right here that I do advocate in a in a very bipartisan way because mental illness is not partisan and we need to definitely work with everybody, and we do. Um, but that's kind of how we got it started. And what I did with Hillary was just write messaging and write out what I thought the changes needed to be. And at that time, honestly, uh, my knowledge of federal policy stuff was pretty naive, and it was honestly just a start. But because of that and working on that, we got connected to so many other Iowans, especially a lot of the state-elected officials. And so when it became pre-caucus season this last time, right, for the 2020 election, and we had what, 26, maybe 30 people running for the Democratic nomination, we realized that we had an opportunity. And actually, we started getting contacted by the campaigns of each of the candidates to see if their local folks could meet with us and talk with them. We were invited to come and do a panel discussion with Amy Clovishar, actually, from your state, Mindy, when she presented her mental health plan. We were contacted as local mental health people to participate in that panel. So, what we did is we went ahead and agreed to meet with every single campaign staff that reached out to us. And then we started contacting the others who hadn't reached out to us yet. So we met with the campaign staff from all of the presidential candidates. From that, you go up, you move on to meeting with the regional people, their state level people, and eventually you get to the policy people and often the candidates themselves. And we basically took a huge amount of time going to all the candidate events and giving them information. I gave them DJ Jaffe's book, Insane Consequences. I gave them state and federal policy solutions. And eventually we got to be able to have short meetings with Senator Corey Booker, Senator Elizabeth Worham, um, and Senator Kamala Harris. And Steve Bullock, the governor from Montana, actually came out with a really good mental health plan, too, that we also tried to help write, even though he didn't meet with us. He just did that based upon having his policy staff get a hold of us. So we spent a lot of time working with them. And based upon DJ's advice, DJ had um become in contact with me over the course of time through Facebook initially.

SPEAKER_00 15:51

Can you say who DJ? And again, we have to move on to another question. This is because there's a lot to cover. But for those who are listening who don't know who DJ Jaffe is, can in a nutshell explain who he is?

SPEAKER_01 16:03

Yes. DJ Jaffe was a wonderful advocate who had been in this uh work for over 30 years. He had a sister-in-law with schizophrenia, and he had really uh mobilized a nationwide effort on advocacy from a policy viewpoint. And he wrote this wonderful book called Insane Consequences. And that book really has informed our work. In addition, we've added to that over the course of time, but he really has been a national voice for people with serious mental illness, and he really differentiated out versus uh advocating for people with serious mental illness versus people with all mental illnesses and the need to really prioritize SMI work.

SPEAKER_00 16:42

Okay, thank you. So obviously, there's a lot that can be done, and I am a family-to-family teacher. We have all taken family to family, but I know that in the end we talk about advocacy. And for me, political advocacy has been something that is a mystery. So I'm really glad we're speaking today and we see what can be done. I really, as a mother, like what you said about realizing that at times when you can't fix your son, which is all all the time, frankly. But like us, I'm sure you've gone through ups and downs, having heard your full story. I like how you like we say, well, what can we do for the world so that his journey means something? I would like if you could just I don't know if it's possible, because I your story is is very familiar. And also I love the way you phrase things in your talk. But in the space of about a minute or two, family-to-family style where you have to tell your story in two minutes. Can you briefly tell us a low point for your son, uh, you know, some success and where he is now very briefly? And then we'll go on to talk about provider training, because that's another passion of yours.

SPEAKER_01 17:58

You bet. So our son has been hospitalized 26 times, he's been in drug rehab five times, he's been at our uh state mental health institution um two times, and that's where he currently is. He's been in four different residential care facilities. He's tried to live in group homes, he's tried to live in our home many times. Um, but the reason he can no longer live with us is because during his worst psychosis in 2016, which was really, really bad, he went for a period of time of about three weeks in the hospital completely untreated because he was not taking his medications despite being in a psychiatric unit. And during that time, he was so sick, he was standing in the threshold of his room 24-7 because he was too afraid to go in the room, he was too afraid to go out of the room, he was afraid to use any of the bathroom facilities because the water would poison him and kill him. Um, and he literally stood on the threshold of his room during that psychosis. Once they got him on some meds, he improved a little bit. And so they convinced me to take him on an on-campus therapeutically vote absence. And during that walk around the University of Iowa hospitals, he went within a very short time frame from being completely fine and normal and joking around, eating a light snack at the cafeteria, to we walked outside, a bird crossed our path, and he turned to me and said, Mom, the voices are telling me I need to kill you right now. Then somebody came up that he knew, he turned right back into being completely normal. I had never witnessed that amount of lability between how his mood or affect was, and that was when they decided that the meds were obviously not working, and he had his ECT at that time. And it was wonderful. It really did pull him out of that psychosis. But after define ECT for somebody, sure. Sure. It's ECT electroconvulsion therapy. They basically cause a little seizure, and it helps to break up those short-term memories, which is basically what delusions are or short-term memories.

SPEAKER_00 20:10

And it's not as scary as what you see in the movies, it has come a long way. So just so everybody knows, you know, what we're talking about. So you have so that sounds like a definite low point. I know from your story that, like our sons, he was a fantastic little boy, golden child, bright, you know, all this. Absolutely.

SPEAKER_01 20:28

Where he is today in 30 seconds. Sure. So he's been admitted back to our state hospital for a medication change to try to stabilize him so that he can be more successful in going back out to a group home or another type of setting. And they are considering doing ECT again. So he is there now, and he's doing a little bit better so far.

SPEAKER_00 20:51

Such is the life of somebody with schizoaffective or schizophrenia and their families. So I know there's a lot more to it than that, but thank you. I just want our listeners to know you're one of us. Oh, I am definitely. So I have also taught another program that NAMI has is called Provider Ed or Provider Training. I don't know what they call it these days. In Connecticut, I taught it for quite some time. It was quite an interesting experience, especially because of the training we went through, which wasn't just family members learning about serious mental illness. But at the time, for me, it was a panel of two family members, two people diagnosed with the illness who were managing the illness, and one professional in the field, like a social worker or something. We taught it for a while and then the program went away. And now I don't believe we're teaching it anymore. You are very passionate about NAMI provider ed, and you teach it in Iowa. So, you know, again, it's we have so many topics to talk about, just so you know, we're 22 minutes in already. So But I really want you to get a chance to talk about provider ed and uh your advocacy efforts with that, what you're trying to do, why you love it.

SPEAKER_01 22:09

Okay. So it is currently being taught with a teacher panel, still consisting of a family member, a person with lived experience, and a mental health professional who happens to either have a diagnosis themselves or a family member with a diagnosis. So now it's a three-person panel. The training was extensive, just like what you talked about. What has happened here in Iowa is that they developed a relationship with Des Moines University to teach it at the medical school. And when they started doing that, we got feedback from the medical students that it needed to be revised. So it's much less of a manual being read to people, and it's become much more of an integrated thing with videos and interactive exercises and a lot more discussion and case studies included. Why I'm passionate about it? Hmm, because when we teach this to people who have been already practicing in the field, especially, and it we've taught it to both uh professionals, taught it to uh nurse practitioners, nurses, psychiatrists, and direct care staff as well from like a successful living, which is a one of the community mental health services here in Iowa City. What you see happen is the people that are taking this class, obviously they've already been working in the field, but they have their eyes open to the experience of what it's like to have the onset of the mental illness for the patient and for the family. And it really turns on light bulbs for them to see things from a completely different perspective and understand just how traumatic it is to get a mental illness, but also how traumatic it is to try to get medical treatment for a mental illness, right? And I think it's something that some of them have never ever considered before. Um, and we also in the program really take on, you know, the really address the tendency of people to blame the family. Because I don't know about you guys, but we we interact with families from all over the state and honestly now all over the country. I've never met a family that caused their child's mental illness, not one. I know it happens. I'm an adult. I worked at a children's hospital in the past. I know child abuse happens. Don't get me wrong, but for most of the people that get serious brain illnesses, it's not trauma that caused it, right? And it really helps for the people that are being taught this class to see a family member and a patient with mental illness be doing so well that they can teach a class, right? That they can get up there and they can speak, they can tell their story, they can do these engaging exercises. It really helps them to see things from a very different perspective and it directly impacts how they treat their patients in the future.

SPEAKER_00 25:01

That's why I like it. Thank you. Is there a place where somebody can go for information? Before I let Mimi has uh an important question as well. So you're you're up next, Mimi. So I'm I know that listeners want to know more. Is there a resource they can go to to find out more about provider ed and how to get it in Iowa or in another state or perhaps nationally? What would that resource be?

SPEAKER_01 25:26

Yes. So the person at NAMI National who's in charge of expanding this program with a with a lot more vigor than they have in the past is Leah Wentworth. And her email is L W E N T W O R T H at NAMI.org. And she's probably going to be the best resource to get a hold of information about it. You could also look for it on NAMI Iowa's website. There's a really good video that we have put together so that people can get an idea about it as well.

SPEAKER_00 25:58

Awesome. And I'm assuming since you retired from your job to do this, that you spend a lot of time on these advocacy efforts. So Mimi, what do you want to know?

SPEAKER_02 26:10

Well, I know this is a big and probably impossible question, but what do you see as some of the possible or probable solutions for what is wrong in our broken and misguided mental health treatment system?

SPEAKER_01 26:27

Yeah, big question. Um, from a federal policy standpoint, we really need to end the IMD exclusion. We need to try to get HUD to subsidize.

SPEAKER_02 26:38

Can I just um explain what the IMD exclusion is for people who are going to know about this?

SPEAKER_01 26:44

Okay, sure. The IMD exclusion is part of the Medicaid Act of 1965. And IMD stands for Institutes of Mental Disease. And it was a part of that act that was meant to be helpful. They wanted to reduce the size of psychiatric facilities, so they prevented any federal matching Medicaid dollars from working to be utilized for any facility with more than 16 beds for people that have mental illnesses or intellectual deficits. And it's effective for people from age 18 to 64. Um, and so what it is, it's a legal form of discrimination against our family members who have a brain illness that's not their fault, um, that doesn't exist for any other category of a medical diagnosis. And that has been one of the big causes of the over-de-institutionalization that's happened over the past, you know, 60 years.

SPEAKER_02 27:39

And can I just point something out here to everybody who's listening? This is already a couple times the phrase, people who have serious mental disorders or or psychosis that are not their fault. Would you ever imagine hearing somebody talking about cancer or or Parkinson's or something and have to have that disclaimer on there? It's not their fault. Why the why do we even have to say that?

SPEAKER_01 28:09

Yeah, why do we have to say it? Because there's so many misconceptions out there, and people just don't know. And I used to get really upset about that um at the Iowa legislature. I'm a I'm a registered lobbyist now. I don't get paid anything, but I do that anyway because it helps you to register for and against bills. I had one senator turn to me and say, Well, okay, I understand that you're good people, but you know, what what caused your son's illness? And of course, I explain all the science of it. And what ended up actually getting through to him was I put up a picture that showed a CAT scan of a twin that had schizophrenia and the twin that didn't have schizophrenia. And he literally teared up. He goes, Oh my god, it changes their brains. And I'm like, Yes, sir, and I'm sorry, but no parenting can do that to somebody, nor can a cell phone. That was his other theory, was it was cell phones. The level of ignorance, and I say that without any malice, but they just don't know. And so what I do is I spend time educating and then granting them grace. I say, okay, you didn't know, but now you do. So let's work on this.

SPEAKER_02 29:15

Okay, I interrupt.

SPEAKER_01 29:17

Yeah. Oh, that's okay.

SPEAKER_02 29:18

All your solutions.

SPEAKER_01 29:19

So the other solutions, um, the biggest elephant in the room that a lot of time is not spent on is that we really do need long-term supportive housing solutions all along the continuum care. And we have to admit that some of the patients really do need 24-7 care. And if we keep ignoring it, that's why we keep having them end up, you know, in prisons and on our streets and in graveyards, I'm afraid. Um, and so we have to be having support for that. So, one of the things we'd like to see is that HUD can subsidize for residential care facilities, can subsidize for group homes. We need to be more creative in the solutions. And I think that's one of the big ones that we could be really looking at because they've done an awful lot of throwing money at homelessness and that hasn't worked. But if you throw some money, housing, and treatment together that patients can't get kicked out of, that's what will work, right? So those are some of the big federal solutions.

SPEAKER_03 30:19

I notice you did not mention um the anti-stigma campaigns. Could you tell us what you really think of those?

SPEAKER_01 30:26

Yeah. So I'm fine with talking about stigma, but I don't want to spend one single penny more on an anti-stigma campaign. And the reason for that is that the reason that there's stigma is people are afraid of when somebody is untreated and unfortunately something happens, right? They're afraid of the person that's on the street ranting at the birds, right? They're afraid of that. So I think if we want to get rid of stigma, we treat the people who are the most sick. And that's where we need to invest our money. Invest the money in treatment of the people who are the most sick.

SPEAKER_02 31:00

Yeah, because it's like, what do you want to spend your money on? The eliminating the person who is yelling at the bird so you don't have to see them, or fixing them so they're not yelling.

SPEAKER_03 31:14

Exactly. That's exactly right. I like to say, I like to use the word discrimination myself instead of stigma. And in fact, NAMI Minnesota and NAMI National are getting away from the word stigma because it really is discrimination, the way people don't get help with mental illness. And when we say stigma, we get we give the ones who should be paying and doing something about it a pass because they can, you know, spend all this time and money talking about anti-stigma. And uh we have an insurance company here in Minnesota, they like to say make it okay, you know, but but if they're not um funding things that people need or we aren't as a society, that's discriminatory, and that's something we can fight. So thank you.

SPEAKER_02 32:01

And the other thing I would tell you that people don't recognize is to the degree that when I I just saw a um a commercial for one of the new schizophrenia drugs, and what they say is if you or one of your family members is affected with schizophrenia, as though it's not a disease. I mean, can you imagine if you were affected by cancer? Yeah, I'm affected by cancer, I'm dying. It's it's real. And you have to we we have to stop putting this in this other category that somehow the the implication is somehow it's somebody's fault, the patient, the family, somebody. And it's a lot of wasted money and energy.

SPEAKER_01 32:42

Yeah, and when we were talking with all the U.S. senators and people that were running for the presidency, one of the things we talked with them about was to please stop calling it a mental health condition. And, you know, stop being mamby pampi. Say the word schizophrenia, say the word depression, say the word bipolar. It's okay and better and more specific. And so we actually did get like Senator Warren to start doing that. She actually said that in one of her CNN town halls. She said, I promised a friend I would talk about it this way. And so she did. Um, so you know, that's how you have to kind of keep doing it. And that's very much why, you know, we we I call my talks advocacy or ripples of hope. And I do that because the more people we can educate, the more they can educate. And that's part of why we spent so much time talking with all the campaign staff, the regional staff, the policy staff from all of these campaigns, because all those young, intelligent, committed people are going to go work in other states, maybe in the national government, and they can start being smarter and spreading that out. And that's what we have to do. We have to get more and more of the general public to understand it. Because that's another piece of it, right? Getting the general public to understand so that then we can create the political will for the changes we want.

SPEAKER_00 34:04

Right. So that stigma can be caused by or maybe just is lack of information or misinformation. For that representative to be unaware that it is brain changes scares me that they would just believe what seems easiest to believe. And so education is truly uh a part of what you're trying to do. And I applaud it so much. Let's talk a little bit more about your dream of creating psychiatric assisted living campuses. Now, I will share that two episodes ago we had on uh one of our most favorably received episodes was uh a young man named Carson who is doing incredibly well. And part of his story is 12 months in a psychiatric assisted living campus. Perhaps it was more for addiction, but I think it was more than that. And for my son, when he went right after my book came out, and he was living in a group home with 2407 care, and he started responding really well to uh to his treatment, he got graduated to his own apartment with no services because he said, I don't need a roommate, and they believed him and they didn't want to talk to me. And so how different would his story have been, and how many other hospitalizations might he have avoided if he could have been stepped I won't say stepped down, but stepped aside to an assisted living campus. And I know some do exist, and so tell us about that. And that's what we're hoping now for my son, for him to, and he's interested now in something. So tell us about that dream psychiatric assisted living campuses. I've seen a little few on my travels, but what would that look like to you?

SPEAKER_01 36:07

Yeah, so um up at we have two MHIs left, and we only have 64 beds for adults in the whole state of Iowa, by the way, and our state institutions. How many? We are ranked 64 in the whole state, in the whole state, and we have a million of 3.1 million people, right? We have that population. So we are 51st in the country. But at the mental health hospital that's up in Independence, where our son is now, it looks like a big, beautiful college campus. I mean, the grounds are beautiful, they're beautifully manicured. There's all these buildings, and they're using like one or two, right? And so there's all these buildings, and I just imagine, and I pitched this actually at a legislative visit at the MHI just a couple of weeks ago. And so the mental health institute. Thank you. Sorry, lots of jargon in our work. But I pitched to the legislators that we could create it where we have some acute care units with first episode psychosis programs where we could keep people for longer so that their brains could actually stabilize and heal long enough so they could become cognitively aware of their new illnesses, right? And they and their families could be educated about what it is and what to expect and how to move forward, right? But it could also have subacute care beds, could have some independent living units, could have some group homes, could have a cafe or a bookstore where people could start working again with some support, have this like full continuum of care that's there, where they don't have to stay there forever, right? But they could if they needed to, right? Which would be wonderful. And I did listen to the episode with Carson and I loved whoever asked him, how long were you there? I I wanted to reach through my phone and hug you because that was the question. He was there long enough for all of those things to happen, right? He was there long enough for them to figure out the med that would work for him and then be able to be more successful. And that has not been available to most of our children, unfortunately, ever so sadly. But if we had a campus like this where people could potentially, you know, start out in one level and then go down to the other or say their illness gets worse, they could go back up to a higher level of care without too much time going by. Imagine how many of those people would have healthier brains because they weren't going through repeated psychosis that is eating away at their brain, right? That's what I think of. I think of it as a psychosis acid. So that's our dream. Now we won't get that, you know, but it will help support our direct human services. We won't get it right away. We won't get it right away. But by pitching, pitching the dream, it allows us to actually hopefully get us some more beds there, some more subacute care beds, and expansion of the services that are available there. Because we need to be approaching this with a much more multidisciplinary approach. We need more than a bed and a pill or bed and a shot. And that's what happens in most of the hospitals and only for 72 hours, which is not long enough for anyone's brain to heal. So that's kind of my dream. And honestly, I'd love to see it happen. And I think it could happen. I think we could create those things because we already do that for a different population of patients. We already have these things in existence for people with Alzheimer's and dementia and Parkinson's, right? If we can do it for that population of people with one kind of a brain disorder, I cannot fathom why we can't make that happen for our adult children who have a different kind of brain illness.

SPEAKER_03 39:53

Never give up and keep hoping and also remember, you know, you are in Iowa and some other states, Minnesota isn't perfect by any stretch of the imagination. But some of the things you're dreaming about, we actually have. And um we have our son is not just limited to, you know, 72 hours. He's had a lot of help. What hangs us up here, what hangs our family up is anasygnosia, the fact that the care is here, it is available, but it's not available if the person isn't recognizing their illness and writ willing to partake of it. But just don't give up hope. You look to the north. And um, if you can solve anasygnosia, we'll show you how we have a continuum of care. Not enough, but but better than Iowa.

SPEAKER_00 40:38

Yeah, start. And and I will share that in my travels when my book came out, which amazingly it was a decade ago. I went to Homan, Louisiana, and I got to tour a facility that was very similar to what you're talking about. And there were people with schizophrenia and uh severe bipolar, for lack of a better word, who actually had their own little uh duplexes, but every day were visited by someone. And there's one right in New Haven, and I'm hoping I have a fellowship place. I'm hoping to interview the person who runs that here on the podcast, where everyone has an apartment and there are gradations of involvement. But when I hear your dream, I think about community. I think, and I will tell you in in the home where my son is right now, which is a state-run group home, but the person running it said, Hey, we have three group homes in our area. Why don't we all have a party? And you know what? They had a party and they invited the residents of the other group homes and they had a talent show and they had I and it just made me so happy that these were human beings learning to create a community. And so even on a smaller scale, things are possible and what we want to work for a larger scale. And I will mention also, I hope to do an episode on the international clubhouses, which are places that are not necessarily residents, but Fountain House in New York certainly does help with that. And so there are levels of getting toward that dream, but I love that dream. We have about five minutes left. Mimi, why don't you take the final question?

SPEAKER_02 42:21

I was gonna ask the question about your talk and the ripples, and you already got that. And that that was very, I like that because it's it's hopeful, and it also it's kind of a roadmap for how on a grassroots level we can make this change because the more we talk about it, the more it keeps pointing to the the big problem is people are ignorant of what this really is. So I'm just wondering if you have any more ideas in that direction.

SPEAKER_01 42:53

Other than that, you never know where one act of advocacy is going to go, because almost always it leads to more and more. Um you know, when I go out and give a talk, almost always I get invited to do more talks, or it leads to a connection that leads to getting to know about a different service that I didn't know about. Um, and actually I wrote an op-ed for the Des Moines Register and about the, you know, the fact that they always conflated the issue of uh mass gun violence with people with mental illness. And I unpacked that. And that led to the Treatment Advocacy Center reaching out to me and saying, hey, do you want to improve Iowa's commitment loss? So we did. Um and actually we are working, Mindy, on creating the first civil mental health core NEOT program right here in our own judicial district. Um it has been one of those things that it's taken years, um, but we are almost there now. Almost there. So that's kind of what I mean by the ripples of hope. One thing almost always leads to more things. Um, and that's how we have to do it. And we need everybody at every end of the country doing it. We need to all be out there. Are doing it. So I'm loving your podcast because of the fact that you are getting more and more voices engaged and more and more people to understand the issues. So it's extremely helpful that the three of you are doing this.

SPEAKER_00 44:14

And it's extremely helpful that we have guests like you. So we are all trying to create ripples of hope and things that make sense and create an ocean of solutions or something. There's got to be some kind of some kind of analogy there that makes sense. So uh Leslie, thank you so much for joining us today. Uh, this is the time we usually just ask for any last minute uh messages or words that we haven't had a chance to. I'll let you have the last one. I'll I'll just say keep doing what you're doing and let's make these ripples and do the educating and keep hope in mind. But it's not just blind hope, it's hope backed by action and truth. Anyone else?

SPEAKER_02 45:07

Mindy, Mimi, any final I just want to thank Leslie for what she's doing. I mean, this is the kind of real grassroots, feet on the ground work that needs to be done. And you're doing it, and and I was very moved by what you said at the beginning about your reality, about your son's outcome. And deciding that, well, if nothing else, you're gonna do this. And I think a lot of us, that's what how we ended up here, but I I just found it very moving.

SPEAKER_00 45:42

Thank you, thank you.

SPEAKER_03 45:43

And I would just say my thanks as well, and especially keep doing what you're doing with presidential candidates that come to Iowa because some of the rest of us don't have that luxury of being early, early voting states. And so you are doing the Lord's work by doing what you're doing with all the candidates for all of us.

SPEAKER_00 46:06

Thank you.

SPEAKER_01 46:07

Thank you, and thank you to all of you for your books. They're wonderful. They bring tears, obviously. And while none of the stories are ever the same, they're all the same, you know, we all relate to them, they all resonate. So thank you for writing them.

SPEAKER_03 46:22

And never give up on your son. You said he might not be doing as well as you would like, but when you talked about all the things, um, all the places he's been, the numbers of times, hearing voices telling him he needs to kill you, all those things. We have been there with our son. And right now, anyway, he's for the last two years, actually since I finished my book, he's been doing incredibly well. So never give up. There's always something better coming.

SPEAKER_00 46:50

We won't. We won't give up, trust me. And you're definitely not alone. This has been episode 24 of Schizophrenia, three moms in the trenches. Tonight, four moms in the trenches advocating for change for our sons. Thank you. 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 MiriamHyfenfeldman.com, mindygryling.com, or randyk.com