6 Hospitals. 2 States. 9 Months

0:00 Michael: Hello and welcome to Holding It Together, Kinda podcast. I'm your host, Michael Mackniak, and here we will get real in our conversations about mental illness, caregiving, and the messy reality of keeping it all balanced. There's no sugar coating, no clinical jargon, just real talk about the hospitalizations, the medication battles, and the toll it takes on a home and all those who live in it. This is for the parents, the siblings, the partners who are doing the impossible every single day. Holding it together as a home for the overthinkers, the multitaskers, and anyone who feels like they're just one spilt cup of coffee away from a meltdown.

0:39 Michael: Find us on YouTube at HITKinda and subscribe, like, follow, comment, vent, throw rocks, or whatever else you need to do today. Sherry was fastidious. For those of you who don't know, that means that she was organized and she was really had all of her ducks in a row. Her eyes were dotted and her T's were crossed. She was ambitious, uh ambitious, she was loving, she was outgoing. When she was 18, her life was just a series of, you know, like color-coded planners and a 4.0 GPA. She had a family that loved her, and she was really the center of that family, and the center of the love that that family uh felt.

1:26 Michael: Well, then at 19, the plan didn't really change, it more or less blew up. Six hospitals, nine months, two state lines. Her family didn't know what they were looking at anymore. They were wondering, what did we do with the girl that we sent away to school? So I'm Mike Mackniak. Welcome to the Holding It Together podcast kinda. We're exploring cases that don't just slip through the cracks, they blow the cracks wide open. These are real life cases of severe and persistent mental illness that present impossible problems for our struggling service systems.

2:07 Michael: These are the stories of trapped families in the collateral damage of a bureaucracy that has reached its limit. So I welcome you all, and I want to welcome my panel here with me today. These are all friends, and in the interest of full disclosure, these are all people who work for me and have worked with me for a quarter of a decade. I mean, collectively, well, we'll get to that in a second, but I'll bet you we probably have 75 years of collective experience in the mental health field. First of all, I want to I want to introduce Sara because Sara and I lived Sherry's case together.

2:47 Michael: And I'll tell you from my perspective, the first things that I remember about Sherry's case were the phone call that I got from a friend who worked at the hospital, asked me to come up because they weren't having problems with the with the client, with the patient so much as they were having problems with the mom, the patient's mom. What we saw at that time was the classic irate, you know, woman who was going through, as I like to say, all of the stages of loss and all the stages of grief all at the same time.

3:17 Michael: And and and that's understandable when you understand that her daughter had been in six different hospitals across two different states in a short period of time of only nine months. They've never seen mental illness in their family before. They had no friends who were involved with you know or had ever experienced mental illness. And they more or less were really feeling the loss and and the crunch. So my friend calls me up and asks me if I can come up and help this mom out. And as I walk into the hospital, I'm just hearing this battle going on.

3:53 Michael: Well, I it was actually a one-way battle where the mom was really, she was mad, she was irate that you know, she wanted answers. She wanted them to just do something. You know, I remember [her] saying over and over, you people aren't doing anything, they're doing nothing for my daughter. And the emotion was raw, the the discussion was was raw, the feelings were palpable. That's what I remember of my first encounter with the the case of Sherry, whose name we have changed here. If in fact we do slip and say her real name, I will later beep it out for purposes of privacy and and to respect the family.

4:34 Michael: But Sara, what do you remember? And first of all, let me let me just say that Sara is the right hand man to the right-hand leg to the three-legged stool that is here, along with Angela, who you'll meet in a second. Sara is the clinical director of my organization called Guardian Ad Litem Services. We're known as Melissa's Project, and we've been working at this care coordination model, the Guardian Model that we created back, we created together, believe it or not, Sarah, 25 years ago. And here we are.

5:07 Michael: So for introduction's sake, as I just said, you've been in the business with me for 25 years. You are an MSW LCSW graduate from Columbia University. She always has to make sure she gets that plug-in. What else you'd want to tell us about yourself?

5:25 Sara: Nothing. That's that's good enough. So what I remember about Sherry's case in terms of meeting the mom for the first time was that I was only 22 years old at the time. So I was a baby social worker back then. I remember the frustration that the mother had in the system. And I remember the hope that she had for her daughter. And those two things just created a force to be reckoned with. So she at the time was a squeaky wheel who was not getting the grease. And I will have to say, looking back at that 22-year-old social worker that was trying to help this family member, you know, I was coming from, I was right out of grad school.

6:10 Sara: I was coming from, you know, mic- micro, macro social work, you know, I'm gonna fix, change the world. And I put my all energy into it and trying to get the system to listen to her. And I think, Michael, you and I were pretty effective in doing that. Looking back 20 years later, being a family member myself, dealing with folks in the system, whether it's the geriatric or mental health population, I then was able to relate to that family member 22 or 20 years ago, because the system treats family members a little bit differently than they treat a social worker or an attorney, you know, like Michael, like you are, or a conservator.

6:52 Sara: And so I've had my own battles and thinking back like I was that mom, you know, I was that that family member, and feeling just kind of lost and hopeless in terms of you're just not getting people to listen to your needs. So it's good.

7:08 Michael: Well, that's and that's a big part of it. That was a huge, the huge part of it for the mom in this in this case, because as I said in in my introduction, what we had here was a woman who started in Harford, Connecticut. For those of you who don't know, Harford is basically like really the central big city of it's a capital, it's a central city in our tiny little state. And and Sherry worked her way from that hospital and she kept heading west. And she hit, you know, let's say, I don't know, the New Britain, she went to Waterbury, she went to Danbury, she wound up going all the way down to Harrisburg, Pennsylvania somehow.

7:47 Michael: To this day, I don't know how she got there or why Harrisburg, Pennsylvania. But let me just say, despite what the Josh Ritter song would say, there's no good way to get to Harrisburg from here. So I don't know how how Sherry got there, but what we're seeing at this at this juncture with her is the first episode, the first onset of mental illness that has ever been recorded by not only uh Sherry, but also everyone in her family. So you could imagine, if you will, the the shock, the overwhelm, the awe of what she was going through, Sherry, that is, and then what her family was looking at and just being completely and utterly blown away by it.

8:34 Sara: Michael, I think what's important too is substance abuse complicated the picture. And so I think this this Sherry's story really highlights the revolving door that happens in our system. So each hospital that she went into, mom had to reshare her story, get them to take a look at the mental health issue on as well as the substance use issue. Um and it's exhausting having to share your story with five different hospitals starting all over again, talking to multiple people, because you're not only talking to the ER people, then you're talking to the inpatient people.

9:08 Sara: And it's it's a full-time job and it's it's exhausting.

9:12 Michael: Yeah, and and and that's a great point. And that really is the the crux of what I wanted to discuss with all of our panel here today. So let's let's let's get into that. I think we've given enough of a background. If we haven't, I'm sure that everybody else who's joining us here today um can chime in a little bit because they like to correct us when we're wrong. Seems that happens a lot. So this is what we're this segment's what we're gonna call the front line. Okay. The front line, folks, is the space where theory ends and reality hits.

9:43 Michael: It's the 2 a.m. phone calls, it's the hospital waiting room coffee, blech, and it's the absolute exhaustion of trying to, you know, save someone you love, in spite of the fact that the world keeps turning and they keep maybe running away from you. This is what it looks like when a family becomes the only thing standing between a crisis and a catastrophe, and obviously their loved one and the needs of their family. So, first let me introduce Angela Herzler, who is here. Angela is the other leg of the three-legged stool that is me, Sara, and Angela.

10:16 Michael: Angela's more or less been with us right from the beginning in creating our agency. Angela is a regional director and a supervisor in our office. And Angela is also you're MSW, LCSW now too, right?

10:29 Angela: Yes.

10:30 Michael: Yeah, and you've been at it for 25 years too.

10:34 Angela: Yeah, I tried to. What's that? I joined in 2004.

10:41 Michael: Yeah, but before that you were working for self, right?

10:45 Angela: Yeah, and Waterbury Hospital.

10:46 Michael: Yeah, so we've been at this for a long time. Did me and did me and Sara leave anything out when we were sort of given the basic overview, the intro of from your perspective? I'm sorry.

10:57 Angela: I think you guys summarized it pretty good. I guess the only thing that I would probably add to it is, you know, the frustration of being proactive in a reactive system. And, you know, I just saw a news article from New York Times from this year that was pretty much the same story of Sherry that we had in 2002. And so it just kind of shows you how much work we still have to do to kind of change that mindset to, you know, we're all trying to, as a family member, to be proactive. We know our family members, right?

11:29 Angela: We know them. And sometimes people don't give the family members the credit of how much they do know their loved one. And sometimes that gets brushed to the side and then it causes, you know, ongoing frustration that people aren't being listened to. And the other thing is that people are looking at it in a moment of time instead of the big picture. And so that I think is also something that really frustrates family members that are are trying to get their loved ones the help they think they need.

11:55 Michael: Yeah, I used to love to go into court and argue that uh we're not looking at the totality of the circumstances, I would say. You know, you're looking at that little snapshot as you just alluded to, and that's it is, it's huge, and it makes such a big difference to not look at just one little acute moment versus what's going on? How is this impacting her life, her education, her job, her family? You know, and and and Sara said one of our analogies we've used for 25 years is yeah, the squeaky wheel doesn't get the grease very often.

12:29 Michael: So let me uh turn it over then to Stephanie. Steph, introduce yourself and what you where your role is and where you're at and how long you've been with us too, if you would.

12:40 Stephanie: Yes. So I am Stephanie. I have a uh license and master's of social work. I've been with Guardian since 2018, and I am a supervising care coordinator, primarily working in the Danbury and Torrington areas.

12:55 Michael: And I know you've heard about this case over the years, being with us for so long. What are some of the things that strike you as important that we should be pointing out about this case, if anything, or maybe we've touched on it, or if you got any other thoughts popping into your head?

13:12 Stephanie: Well, I think one of the big things about this case, and I see it a lot too in our current cases as well, is you know, a lot of the family are big advocators for the clients, and they don't really seem to get the answers that they want, and it's a big struggle to get anywhere. I have a client very similar actually to Sherry that has done 10 years of various hospitals, rehabs, and was actually the primary advocator for this client, and you know, was very frustrated and and didn't get very far with crossing state lines, going in various different routes, like I said, rehab hospitals across the entire United States, and just hearing by the time they got to us the frustration and I think just kind of giving up at that point of not getting anywhere for her child was really heartbreaking.

13:55 Stephanie: And I I just can't imagine what Sherry's mother went through for all that time and just not knowing what to do with it and not getting anywhere but the hospitals when she would do the advocation for herself.

14:05 Michael: You know, and you bring up a good point that we're gonna talk about later, is if you guys saw my show sheet. I got just so you guys who are listening or watching this, I I got chastised for not providing the show sheet to everybody beforehand. But but Stephanie just brought up a good point that we are gonna get into later, like these invisible or these perceived barriers. You just mentioned state lines. That's actually something here. But that doesn't even have to be state lines for these barriers for communication and whatnot.

14:34 Michael: I mean, we've seen one small little mental health agency who the right wing of the agency wouldn't talk to the left wing of the agency. There's barriers within agencies, you know, and and so there's there's real and perceived barriers that are that are out there that will just blow your mind. And during the course of these discussions over the next coming weeks, we're gonna expose a lot of that, and we're gonna get to one of those discussions today. All right, Mariell, it's your turn. Save the the best for last.

15:08 Mariell: I am Mariell Deshaynes. I am a licensed clinical social worker. I have been since with Guardian since 2018 and I left. Tried to see if the grass was greener and it came crawling back. I feel like I have worked with uh quite a handful of Sherrys, and it is really difficult, especially with the substance use. I feel like the system really looks at these folks as, you know, just another drug user. And these families are not taken seriously. Sometimes we really need to put our foot down, and sometimes it's interpreted better when it's coming from a professional.

15:49 Mariell: I know we've kind of hinted at that, but one of our favorite things to do is a nice little timeline, and that seems to get people kind of nervous and really just taking a step back and looking at how sick this individual is and how much like how much the system has failed them. That's one of my go-to's. So.

16:10 Stephanie: Can I add something, Michael, really quick?

16:15 Michael: Of course.

16:16 Stephanie: Another thing I did want to say too is just all of our clients, you know, that we work with the Guardian have conservators, and a lot of the family members can be the conservator too. And it goes a long way when we're making a request on behalf of the conservator. If I say "mom", they don't respond to that or seem to care. And with the client I was speaking with about earlier when I was talking, my specific client, his mother was the conservator. And I don't know how much she pushed that conservator agenda because I think a lot of times she was viewed as the parent, which is is kind of not taken into consideration as hard as like Marielle was saying, a professional asking for something or trying to move the system along.

16:54 Michael: You know, and that's Sara brought that up before too when she said, you know, Michael, you're an attorney. And unfortunately, that is true. I mean, and Sara can attest, there used to be days where she couldn't get through to anybody, and I would call up and it'd say, hey, it's attorney Mike Mackniak calling, and boom, what do you know? The the you know, the clouds part. And another thing that that Marielle brought up, that Sara also brought up, is the idea that you have to repeat these things over and over again.

17:26 Michael: You go to one hospital, you're saying the same thing. It's almost like us every day. I don't know whatever happened to this medical record thing that that was supposed to change the world, but it seems like every time I go to a new doctor, I still have to give all the same old information over. And when I go back to the same doctor, I still have to give the same information. And it's tedious. Now imagine if you're emotionally just completely frustrated and exhausted because of what's happening with your your daughter in this case, and you have to go and repeat it again and again and again.

17:55 Michael: And and to Marielle's point, we in our office do these timelines, and we bring these timelines with us to these meetings, and we say, Here, guys, don't ask me to repeat this again. Here's everything you need in a nutshell. Our care Caregiver Journal that we're just about to launch is exactly the answer to that as well for family members. So Sara brought it up earlier, and I just wanted to touch on it because Mariell brought it up in in the same kind of context and in a real good way about how having a timeline, having things documented can really, really be beneficial.

18:33 Sara: I just want to add too, Michael, some of our family members have come to us with timelines, and those have been invaluable. So, not to like push your Care Keeper Journal, but it is a good place to keep everything in one place so that when you are meeting new providers, you can give them that timeline. The other piece I just want to really because not everybody's gonna have Guardian Ad Litem, right? Not everybody's gonna have their own private advocate like us. One of the things, though, that I see with family members as well is stopping with the frontline person.

19:07 Sara: And so sometimes you have to keep telling your story to get someone who will listen and will give you some compassion. And so if you're talking to the social worker and they're not listening or they're, you know, busy and they have 26 discharges that they have to plan for, kick it up and talk to the supervisor. If this is something that's really meaningful and you are really feeling strongly about it, keep going until you get someone who may listen, even if it means you have to call the executive director.

19:37 Sara: Sometimes connections are made by kicking things up. And, you know, just another little tidbit is I work with a family right now, and they did not know the levels of care and what wh- the resources available to for their loved one. And that's another thing. As providers, we should be educating, right? We should be educating family members. But as family members, no question is a dumb question, right? What services, what resources? I always look at promoting education as part of our role at Guardian.

20:10 Sara: But there's a lot of people who just don't even know what's available.

20:14 Michael: Well, two things. Number one, that I think that's why we're here doing this meeting and having our our coffee clutch, if you will, together right now. And the second thing is by all means, keep promoting the care care, the Care Keeper Journal and the Navigator Journal, because we want to get it out there to as many people as possible. But um, I'm just gonna I want to go to uh you, Sara. Just as a way to get into more poignant questions that I'm gonna focus at toward the others here. But I mean, here we had a case where we had, for all intents and purposes, like this great kid, this great teenager, right?

20:54 Michael: She was perfect until she wasn't. Systems seem to be built unfortunately for the chronic patients, not for the sudden violent onset of illness in otherwise high-functioning young adults. And young adults are are are a very big population for this for this for these issues. But when a 19-year-old with no prior history presents, you know, with this kind of acute psychosis, why does the system struggle to provide the warm handoff between facilities, between agencies, between caregivers and providers?

21:35 Sara: So uh my first go-to is that the system is siloed. So, like in Connecticut, I'm sure like many other states, we have You know how much I hate the term silos, right? Well, but it is, it is. And so in Connecticut, we have state agencies, and each state agency has their own set of rules and and you know protocols that they go by. And so I think sometimes getting into the front door of some of those agencies, and nonprofits, it's tough because you have someone who's having their first episode, right?

22:05 Sara: Of whether it's depression, whether it's schizophrenia, whether it's bipolar disorder. And getting that person to accept that they have this thing that just kind of came out of nowhere for some is tough. And then getting them into the front door of going to an intake or asking for help is also tough. So I feel like more engagement is needed for the family members, maybe in home engagement for the first steps for some of these first episode folks, because it's really hard to number one figure out which door to go into and then how to get access because the systems are set up, the systems are overwhelmed to say, well, maybe you could go over here.

22:46 Sara: So I see that a lot too. I see a lot of like shell shuffling. Maybe, you know, meh, maybe we're not the great, greatest fit. We're full. Go over here. And it's just, it's, it's confusing and it's

22:54 Angela: Well, let's throw out the insurance stuff too. Let's let's put that onto the table, right? You got private insurance versus state insurance. And, you know, these family members are at the behest of a social worker to guide them and direct them. And sometimes these social workers aren't even aware of what insurances they have or what they can access. And so then the family members are left with no direction on where to even access that stuff, especially when you have the insurance part.

23:26 Michael: And one thing that you in particular, Angela, have been very good at in our office is to take a good study of the resources that are available in any given community. You know, you have a new social worker or a social worker who doesn't care, or social worker who does care and just is overwhelmed and doing the best they can. They very often get stuck into a rut like every single one of us, and they're going to refer A, B, and C agencies. They forget about D E and F, who may be a better fit, just because it's it's just what we do as human.

23:58 Michael: It's human nature. And Angela, you're you're not blowing smoke. That's one of your strengths, is you really do have a good handle on lots of different services that are available in the system. Like some of the women that we've worked through through the years that are in administrative levels out of the commissioner's office that just seem to know every service. I don't know how they possibly keep it straight, but it is important. But and I wanted to go back to you, Angela, because you brought this up before.

24:24 Michael: So I have a follow-up question kind of for you. How does a system's failure to communicate with families, right, in this case, a family, how does it actually increase or impact levels of say relapse?

24:41 Angela: I mean, I think one of the biggest challenges is that we as a system use way too many acronyms. We talk as if people know what we're talking about. And I don't know if people really truly do understand what sometimes they're being offered, and they don't and are not curious enough to do it or don't have the space to do it because they're in crisis. And so they say there's some really place to take them. Sure, let's get them there. Not really realizing that that might not be the best fit.

25:12 Michael: Um, and so and don't, I mean, I know me, it's kind of like fake it till you make it, you know, for the longest time because I'm not in the mental health sphere. You guys are way more educated in the mental health sphere than I ever was. I just fake it till you make it, right? I pretended I knew what the acronyms made until I could figure out what uh I mean what they meant, until I figured out what they meant. And people are like embarrassed to ask, you know. That's that's that's no place to be.

25:42 Angela: Well, they don't they don't want to they don't want to seem ungrateful either, right? They're they're happy that there's an option presented or that there was an answer provided, and and they don't know what they don't know. And so sometimes they're just grateful that they have something else to to have hope for, right? And then when they get there though, then they realize, oh wait, this this isn't the best option, or this wasn't what I expected. And then those expectations get dropped, and then their hope, you know, gets fallen, and then they kind of fall back into that cycle all over again.

26:13 Michael: Important stuff. All right, I want to move on to our system overload segment. System overload is where we talk about the clinical needs that have exceeded the infrastructure's capacity, right? We're looking at blown fuses, revolving door discharges, in this case, a 400-mile record gap, data blackouts, communication blackouts. This is where we stop asking how the patient is doing and start asking, why is this machine glitching? Why is why are things breaking? As I said, hospitalized, you know, six different times in nine short months.

26:48 Michael: In any other field of medicine, this would for sure be seen as a failure. But I'll go to you, Mariell. How come, how come these short circuits, if you will, don't seem to be such a red flag in this system, whereas in the medical system, I'll just call it medical for... what do you think? I I'm just asking your opinion. Why do you think it's more, I don't know, accepted or common than in the other systems? Do you have an idea about that, Mariell?

27:23 Mariell: I don't know. I think we see it in the medical system too.

27:26 Michael: Well, I meant to ask you, by the way, if you could speak up a little because your microphone is very soft. Oh, and you are not a soft-spoken person.

27:34 Mariell: No, I'm loud. Okay, how about now? Are we good?

27:36 Michael: That's better, yeah.

27:37 Mariell: Okay. I don't know. I think we see it across the board. I've also had a short stint working inpatient, and I saw a lot of clients come in and out. And kind of goes back to Angela's point. It was all about the insurance and the money. And that was a big reason why I left. Because that's not why I became a social worker, was just getting them in, cleaning them up, slapping a band-aid, sending them out. No conversations about what we could do to avoid them coming right back through our doors. So that's interesting.

28:13 Mariell: There's a lot of lack of follow-up, too. There's a really the follow-up is just is we put together these great plans, and then if someone's not on top of it, making sure that they're happening, it falls apart.

28:26 Michael: Follow up on whose part, the patient, the family, or the system?

28:30 Mariell: All. Yeah. Maybe take the patient out of it because no, I agree.

28:37 Sara: The patient should be the patient should be responsible too. I think it's just in order for the system to work, everybody has to take their role. But to what Mariell is speaking of, too, I feel like sometimes the system is very reactive instead of proactive. And we talked about that. So when they go into the hospital, the job, the focus of the social worker is, I mean, that's their lane. And it's not it's just it's getting the stable and discharge. And the lane of the aftercare person, if there is one, should be to follow up.

29:06 Sara: But as the system is broken, and I think that's why these cracks exist.

29:11 Michael: No, and that's what I was getting at with with Mariell. I wasn't trying to, you know, it wasn't a trick question because I think everybody is responsible for being more involved in everything that you said. But we have accepted on some level, and Stephanie, I got a question based on this for you, and maybe there is no answer to it, and you could tell me if there isn't, but you know, we've created this this what for lack of a better term, a black box that came in, we got it out of our hospital, and now we just say, okay, our job is done.

29:42 Michael: We're handing it off to the next person, but we don't hand off any information with it. And then, and what I was getting at with Mariell is yes, I think there does have to be a rethinking of the way that we will do further outreach. But why do you think, Steph, that there's so much tension or so many problems with you know, with passing that information about this patient or this particular black box? And I say black box because that just gives the analogy of sort of like mysterious, we don't know the next time she shows up at hospital B as opposed to hospital A, we're gonna start all over again.

30:18 Michael: How why is that happening?

30:21 Stephanie: I I don't really know. I don't know though, if like if everybody's going to different acute hospitals, how are they going to be sharing that information, right? Like I have a certain client that consistently is at Charlotte Hungerford Hospital. So they're aware of her history, how frequently she's here, the course of treatment they've done in the past. If she for some reason shows up at Waterbury Hospital, Waterbury Hospital is not going to know anything about her and her history until I call and give them that background information.

30:47 Stephanie: There's not always somebody available to be doing that, especially with psychs, because you never know, is it just going to be an ER? Are we actually going to get an admission? And if they do get an admission, how quick is it going to be? I've had clients that are in and out of the hospital in a weekend. And by the time we get back to work the next week, it's they're already out in the community. So I've kind of missed my boat on updating the hospital of what's going on. But I just think that for the psych hospitals, especially, it's about cleaning them up, stabilizing them, and getting them back into the community.

31:17 Stephanie: And the hospital just sometimes doesn't have the time and can't kind of do that history of how to avoid this in the future. It's all very like short-term thinking.

31:28 Michael: We're kicking a can down the road. Yeah. Much like we do in every aspect of our federal government, our state governments. We kick the problem of global warming down the road, let our kids figure it, and they'll complain about it the same amount that we complained about it, right? And we just keep perpetuating the same problems.

31:45 Stephanie: Yeah. And I think like the community providers can see the bigger picture of these kind of more frequent flyer clients in the hospitals and what we can do differently, but I don't necessarily think that's the priority of the acute hospital clinical team.

31:58 Michael: No, and as I I guess Marielle and Angela both threw out there at one point today already. Money talks, man. Insurance talks, insurance has a lot to do with it. What what will what will insurance pay? And I was just listening to the radio yesterday. They were saying it's amazing to me that hospitals are private industries and they have to make money. And we forget that they are private industries. They have to make money. They've got a board of directors, just like every big business. And this is, I'm not poo-pooing, I'm not trying to dump on hospitals, but we have to look at the reality if we're going to have these types of open discussions where we're willing to pull back the curtain, so to speak, and see, you know, the Wizard of Oz behind it.

32:40 Michael: But you know, Steph, I mean, we could track a FedEx box from you know Connecticut to California to Indonesia and back. We know where it is. We're this tracking number, we're following it, but we can't follow these people through these systems. And as I said, we were all told about this electronic medical records keeping was going to be the great new thing. And it's just not working. And I don't want to get it, I don't want to open up this can of worms because we're going to do this in another case, in another segment later.

33:16 Michael: And I don't know which one of you guys will be with me when we do. But the HIPPA myth and the HIPPA mystery and privacy and confidentiality and people hiding behind those cloaks has created a a logjam in our system. So you have a Sherry who is going from system A to system B, and she's carrying her black box. Her mom is carrying that three-ring binder, that that that Navigator Journal that we've created, and she's going from place to place, following along in the footsteps because we can't get out in front of the situations fast enough.

33:52 Michael: And that's that's reality. And and and we can talk about it until we're blue in the face, but we need to do more like what we do in our agency, and what we're encouraging people who are listening or watching all of us speak today. We need to encourage them to figure out ways that you're gonna get that proactive attitude and get out in front of it and say, you know, life doesn't stop at Friday at four o'clock. As Stephanie just said, you know, she was off for the weekend and she didn't get to the hospital in time before they'd already discharged and somebody was back on the street.

34:28 Michael: And and that brings me to to the next segment that I want to talk about, where we talk about the cracks, okay? We talk about the safety net. Today I want to look at these cracks in the system. These are the the invisible lines that form, you know, where families lose their voice, patients lose their way. You know, from you know, you got these privacy barriers that I just mentioned to you know, we're shutting out loved ones, financial abysses, insurance, and you know, things like that that halt progress.

35:00 Michael: We're asking, what are the gaps here and who's falling through them? In this case, Sherry was falling through them as well as, and she was pulling down her whole family with her, like Alice down the hole, down the rabbit hole. But I want to stop looking at the person who fell, and and I want to start looking at the holes. And and the holes, you know, in this case, Sherry was walking on, you know, this floor, and I want to look at the floor that she was walking on to see where those holes were. So I want to talk about this idea that all of you have brought up in different contexts, but this hot potato treatment of of clients.

35:40 Michael: And some of it is based on money, some of it's based on policy. For the longest time, and and unfortunately, still it's we need more beds, we need more beds, we need more beds. But we we we have this this hot potato patient where we get them in, we stabilize them just enough to discharge them, and then we stick them back out into the system under the same, very often the same treatment plan that got them into the hospital to begin with. So, Sara, do we actually stabilize anybody in five days?

36:10 Sara: So I think it's possible. I do think it's possible. I think if there is a safety net upon discharge and a good solid discharge plan, and like Marielle said, someone following through to make sure that discharge plan happens. So I I do think some people don't need to be hospitalized for months at a time. They need some, I mean, sometimes we advocate and the clients advocate with us to go into the hospital to get a quick medication change. That that will be a game changer for them. Sometimes, you know, the line between crisis and stability is maybe a tweak.

36:45 Sara: And so I think that short-term in and out of hospitals, that's good for that. As long as you have a follow-through aftercare discharge plan that's going to support the client. And our clients want this too. It's not like I feel like we're talking about our clients like we are doing for them. I feel like clients are invested in their own recovery. And so I feel like we can't miss the boat on that. And we have for sure used clients to help us advocate for the for the goal. I know Angela is a very big supporter of that.

37:17 Sara: She'll march her client right into the director's office to advocate for things that she's been saying that that the client needs. So I just I feel like we can't miss the boat on that. That there are some benefits of short-term hospitalizations. But when you discharge somebody, like I had a social worker tell me just this week, if we don't have a discharge plan, we're gonna have to discharge to the shelter. That's not helpful. That's not helpful because you're just gonna see the person right back in in two days.

37:42 Michael: And it's not a plan, it's not a plan.

37:44 Sara: And it's not a plan.

37:46 Michael: All right. Well, so Marielle, are we just sort of clearing the cache, refreshing the screen? You know, basically step aside so I can see the one who's gonna replace you.

37:57 Mariell: Yes, absolutely. And I like the hot potato reference because we're throwing the hot potatoes and we're not making sure that someone else is catching them. It's just like, here it is, bye.

38:10 Michael: Yeah, more like an egg, more like an egg tossed in a hot pot.

38:14 Mariell: We're assuming that the egg is gonna land safely.

38:17 Michael: Yeah, yeah, yeah. That's a great, that's a great analogy.

38:22 Mariell: Like that science experiment in high school.

38:24 Michael: Or you have the people on the other end who don't want to catch the egg because they don't want to get the mess all over their hands, right?

38:30 Mariell: Perfect. Yeah.

38:33 Michael: So Stephanie, one time, this was a long time ago, but uh it I it just stuck with me. I had a doctor tell me, or somebody tell me, that they weren't too worried about uh what was going to happen with so-and-so because they weren't so worried about the no- oh, this was what what it is. Okay, we they weren't worrying about what the numbers of inpatient beds look like, right? So they weren't worried about what the let me see if I could phrase this in a way that that will make sense. We are very interested in getting people out of hospitals and making sure that they don't go back into hospitals.

39:13 Michael: I had somebody say to us one time that it didn't matter because there will always be that next person in the hallway. There will always be the next person to fill that bed. So again, from the administration's point of view, they're looking at and saying, hey, that bed is always going to be full. That bed means X number of dollars to us. Meanwhile, we've got a patient who is going back into the bed, or maybe there's a patient who hasn't gone back to the bed in years. And and I don't even know what my question is.

39:44 Michael: Maybe I'm just looking for a comment if you have one. And if you don't, that's fine too. But what about that patient that hasn't been back there for years? How come we're not taking that as a success and and looking at it as well, yeah, you're not here, but somebody else is here to replace you anyway.

40:04 Stephanie: You know, I I I don't know, I don't even know where the question was in there, Michael. But no, I agree. So, you know, there's there's just certain clients that kind of pop in and out of the acute hospitals very, very rarely, right? And they're in there and they could be in there for maybe five, six days, clean themselves up, like Sara said, quick med change, and they're back and they're stable and they're good. And then we have our reoccurring clients who it's just like, okay, let's do the same thing over and over and over again, and then we'll wait, you know, three, four weeks until they're back again.

40:32 Stephanie: And I have one specific client that comes to mind. I probably do a commitment hearing for her every single six months. It's exhausting. They're long. We may or may not win them. And even when we win them, we don't get her to the state bed level. And then I know the whole outpatient clinical team knows we'll see you guys again in a month to do the same thing all over again. And it's incredibly frustrating. We all know what I don't want to say no, but would hope would be a better plan for this client to be more stable in the community and we just can't get her to that point.

41:03 Stephanie: And I think it just comes into, you know, we can win the commitment, we can get her on the state bed wait list. The state bed wait lists are long, they're prioritized. So if this client somewhat stabilizes in the acute hospital, people are constantly jumping in front of her for that state bed. And the acute hospital says, you know what, we have more sick patients that need this bed, she's holding up the bed, put her back in the community. And then we wait to do it all over again. And it's incredibly frustrating.

41:29 Stephanie: I get the hospital stance, but it's not always what we want. And we can come up with a better safety plan for the community to hopefully prolong that stability in the community. But to Sarah's point, some of our clients do buy into that. Some of them will sell you the world while they're in the the hospital just to get out. And then they go back on everything they said that they were gonna do to maybe give them a better chance in the community. And that's kind of my more frustrating side of the system.

41:59 Michael: I don't know how to say it any better than what you just did, so I'm not even gonna try.

42:04 Angela: I think you can touch on Michael the the legal part of it, right? I mean, we have very vague advocates in Connecticut for client rights and client choice. And, you know, there are some things like the the case that Stephanie's talking about, you know, sometimes she comes into the hospital and she's very, very symptomatic, and it's an easier, it's an easier win to see that she needs to be in the hospital. But there's other times when she comes in and once she gets there, she can kind of pull it together just enough.

42:31 Angela: And so there's not enough causation for them to keep her. So, you know, we have the the legal aspect of of these, you know, in and outs as well, in terms of what we can and cannot do, even though we all know as soon as she gets out, she's gonna call the police department a hundred times and on, you know, overutilize a 911 service and how much that's putting the community at risk, as well as herself. But the hospital doesn't take that into consideration because it's only a moment in time. And so I think that that also kind of drives that that frustration of how to get somebody help and treatment.

43:05 Angela: The client has some say in it, and then the hospital looks at the short-term, immediate situation, and we're looking at the bigger picture and trying to to bridge all those those pieces together.

43:16 Michael: But I want to I I want to get back to Stephanie's point because I remember what it was that I wanted to point out to her, because it used to used to, and it still does drive me crazy. We're in a meeting, we've got a client who we've been following closer than anybody's ever followed them, uh, maybe except for their family. And we have a whole team of people that we've put together, and the team has been wonderful, and very everybody's very invested. And we're sitting around a table and we say, you know, if you go ahead and let's say, I don't know, discharge her to this program, we know that what's going to happen is X, Y, or Z. And then invariably there's one or two people in the in the forum, if you will, who come up with, well, you don't know that.

44:03 Michael: Well, you don't you can't say that. You don't know that for sure. And and it's like, no, you know, I just want to strangle. No, I don't know it for sure. But I've got this many records showing me that the the the chances are pretty damn good of what I just predicted, you know, and and and come on, wake up a little bit and don't just go back to the comfort. It's so easy to say you don't know that, but but really it's it's and it's much more difficult to say, yeah, you're probably right. Let's try to figure out another tiny little ingredient that we can pop into this system that would change and maybe shake up a little bit why it didn't work last time and how we can make it work this time.

44:48 Michael: But anyway, so Stephanie pointed that out, and I wanted to bring it up because it makes me nuts when I when we were in meetings like that. And you know, I don't necessarily sugarcoat or hold back, and I will usually be the guy saying something about those types of comments. But Angela, I wanted to get last word out of you on this topic because you're pretty good at at tempering my my cynicism, if you will. How about the client who is there under a under a uh 10-day paper, right? They're in an inpatient hospital setting and they're there for 10 days.

45:22 Michael: Seventh day we get a phone call, and the phone call says, Well, yeah, we're gonna move to commit this individual. We really don't think that they're doing too well, they're you know potentially dangerous to self for others, etc., and all the other language. So we're gonna we're gonna try to move forward with that. Well, what do you know? On the eighth day we get a phone call and says, or ninth day, uh remember they only got 10 days under the paper. And eighth or ninth day, it's like, holy cow, it's a Christmas miracle in July.

45:51 Michael: The guy's cured, we're gonna discharge him tomorrow. And again, I'm the cynic, and I know I know what I think it is, and maybe someday there are these miracle cures, but but this is this all goes to the same concept that we're discussing in this cracks of the system. Do you have any input or any experience with this? I know you have experience with it, that's why I'm asking you. Talk a little bit about this phenomenon and what we see so often, or often enough that I would bring it up.

46:24 Angela: I mean, I wish I could share, you know, I do share your cynicism around it because it is very frustrating that we have a plan on day seven. We report to everybody that we got a plan, the hospital's gonna keep them, everybody's feeling pretty good that this client's gonna get treatment. And the next day I have to call up everybody back up and say, I'm really sorry the hospital is not going to keep him or her. You know, but we do advocate as hard as we can. And again, the the hope is that you're kind of building upon these certain situations and as though we might not win this round where we really know this client needs to be in the hospital.

46:57 Angela: It does build the case, though, for the next time they need to be there. And I think that's what our role is, is to give this family, this client, or whoever's working with them hope that eventually they will get the treatment, but we're not gonna win all the time. And we will advocate, we will call. And this goes back to Sara's point. Sometimes you just can't talk to the social worker. If you really feel this client needs to be in the hospital, you need to start bumping it up and be comfortable and get over your fear of agitating the system or making the social worker upset to get what you want.

47:29 Angela: And sometimes that does happen. The psychiatrist will hear from the family member or the team or the clinical directors of the outpatient team. Like bringing those people higher up can make a difference and change that scenario, but it doesn't happen all the time. So I think those are the two thoughts I have on that.

47:49 Michael: And I think that that goes a lot to hopefully the people who are listening to us have this discussion or family members, and you know, let them know that they they've got it, they've they've got the power to do that as well. Okay, I'm just about ready to wrap it up unless any of you guys have any any final words that you want to tack on to this, because I think we covered a lot, we've laid a lot of groundwork, and again, this is our first episode, and we're calling it first episode because this was Sherry's first episode and her family's first episode, and seeing her go through the issues.

48:24 Michael: And Sara, you wanted to say something?

48:27 Sara: I just want to say the last word.

48:28 Michael: Last word. You know, we're gonna make that a segment. It's gonna be the last word.

48:34 Sara: I just wanna, you know, share with the families. Don't lose hope. I mean, we've been doing this for 25 years, and sometimes, you know, the fifth time, the sixth time, don't lose hope. Keep asking questions, you know, keep keep at it, keep trying to get people interested and and you know, caring about what's going on in your family. So, you know, don't give up.

48:56 Michael: No, and that's great sentiment, and we'll end it right on there. So there you have it, folks. Six hospitalizations, two states, enough red tape to wrap up a skyscraper, right? The system didn't fail, Sherry, because it was busted. It failed because it's a collection of very expensive silos, and nobody's got the ladder to get up to the top of it. I mean, between Hartford and Harrisburg, she didn't just lose her health, she lost her fastidiousness, she lost her organized world, she lost that 4.0 GPA, her career path, her ambition, you know, and she also lost that version of herself that everybody knew and loved.

49:37 Michael: And meanwhile, the family lost the version of her too. And they were losing their footing the whole way. So they weren't just fighting a first episode, again, play on words because this is our first episode. Um, they're also fighting against a system that really treated uh Sherry like she was a new problem every time she walked across a new threshold. Six hospitals, nine months. And yet at the end of it, like the most sophisticated medical system in the world couldn't tell the family what would come next.

50:11 Michael: They couldn't stay on top of it and stay in front of it. So the system overload that we were talking about earlier isn't just about the lack of what uh beds or glitches and software. It's more about silence. It's more about the lack of communication between Connecticut and the social worker in Pennsylvania. It's the silence that really hits this mom when she realizes that this is not a safety net, this is just a thing with a whole bunch of holes in it. I mean, she's still here, right? But the version of Sherry that her family knew is not the same, right?

50:52 Michael: The family is holding it together, but it's a different way of holding together, it's a different person, it's a different family unit altogether, and they shouldn't have to do it alone. So, I don't know, that's just think about it from that perspective and it really hits home. Anyway, next week, we're gonna look at the thin line between compassion and control. How we define quality of life when the mind and the body and everything else mixed up in there are at war with each other. Okay, I'm calling it the "Dilemmas of Addiction."

51:30 Michael: So to all you families who are standing in the gap out there, you know, you're not alone. We see you, I see you. Just keep holding it together.

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