Welcome And Why This Matters

SPEAKER_01 0:04

Hello and welcome to the Holding It Together podcast. I'm your host, Michael Makniak. Here we will get real in our conversations about mental illness and caregiving and the messy reality of keeping it all balanced. There's no sugarcoating, no clinical jargon, just real talk about the hospitalizations, medication battles, and the toll it takes on a home and everybody in it. This is for the parents, siblings, and partners who are doing the impossible every single day. Holding it together is a home for the overthinkers, the multitaskers, and anyone who's out there that's feeling like they're just one spilled cup of coffee away from a complete meltdown. Find us on YouTube at HitzKinda, that is at H-I-T-K-I-N-D-A, and subscribe, like, follow, comment, I don't know, vent, throw rocks, tantrum, whatever you need to do today. Welcome

No Wrong Door Meets Reality

SPEAKER_01 1:14

back to Holding It Together kinda. I'm your host as usual, Michael Maknack. If you've spent any time navigating the world of mental health or social services, you've probably heard the phrase, no wrong door. It's actually a real beautiful policy concept, right? It's the idea that no matter where a family in crisis enters the system, they will be greeted with warm handoff and given right resources. It's a promise that the system is designed to catch you, not confuse you. But let's be honest, for most families, no wrong door feels like no right door. Or worse, you find yourself standing in front of a brick wall where a door used to be. You're told the door is there, but your hand never finds the latch or the handle. So in reality, when the front door is deadbolted, you stop looking for a formal entrance. You start looking for an open window to crawl through just to get the basic help your loved one needs. This brings us to what I call the loop of despair. It's a sequence of events that most of you probably unfortunately have seen by heart. It starts with you know the phone call, the first phone call where you braved it up and you said, Hey, I'm gonna make this call. You get a three-month wait, uh, then you get an intake meeting, and then you're told, oh no, that's not our department. You know, it's like that with so many things in the world. Then you're given another phone number and another quote-unquote vetted list of resources that hasn't been updated since 2019, and you know, this cycle starts all over for you. So this isn't just a bureaucratic glitch, it's it's a tax on your soul. Any family would give up. Not because they don't care, but because they're physically, emotionally exhausted by the runaround. The thesis today is simple, but it's it's it's just the hard truth. We're told that a system is a safety net. As usual, I say this. In reality, it also becomes a labyrinth. If you treat yourself as a visitor in this system, if you're waiting for a guide to show you the way, you will stay lost. Today we're gonna talk about how to stop being a visitor and start becoming the manager of the system that you're in. We're gonna discuss how to escalate your needs up the food chain, how to find the back doors, and how to stop knocking on the locked doors and start finding the open windows. Okay, so that's our introduction, and and this is a a complicated topic because well, for for a lot of reasons. It's it's we have a lot of people who are trying to get into a system that is is through no fault of its own, it's backlogged. There's there's a lot of people, resources are very difficult to come by, and we have to spread them out accordingly and according to need, and and it's tough. I will say, and and I want Sarah to talk to talk about this because we get many, many, many phone calls in our office. Sarah, why don't you don't you just open up and talk about that? People are calling our office.

SPEAKER_03 4:21

So we probably get a good five solid phone calls a week from family members who have tried to open the door, and for whatever reason, the door does not is jammed, it's it's locked, it's whatever. And so we end up spending probably a good solid hour each phone call trying to listen to the story because it's always important to listen to like you know what has been tried. And if we can help, we certainly do help or trying to give them real numbers and real people that work and even sending follow-up emails to the people that we're sending the inform, you know, that we're sending them to. I think the issue is is that you have family members who are already exhausted because they're, you know, have been living this, you know, for however long. And there's finally hope that there's gonna be a system or service that's gonna help them. And number one, it's sometimes hard to get the person to the intake, right? Sometimes it's hard to get some of our clients to the intake. That's like a monumental feat. And then when you call the number and you're sent, oh, well, we have a wait list, or oh, what you know, we might not be the right agency for you, it just becomes super discouraging. And so we get those phone calls of we've already tried this, we've already tried that, our person's in crisis and we need help. So it's just it's very, it's it's very heartbreaking and frustrating at the same time because this isn't how the system should work. And I don't think this isn't how the system is intended to work.

SPEAKER_01 5:53

So I and no, and it in in the interest of full disclosure, I mean, in certain areas that we service, we have a wait list. You know, there's just there's only so much love to go around, as they say. So there is that issue. And and interestingly, depending on the I guess depending on the work that you're doing and the business that you're in, like for us, we've developed alliances across the service systems, uh, which lead us to not only getting these phone calls from families who are looking for assistance, but we're also getting phone calls from other agencies. We're even getting phone calls from state agencies looking for us to maybe have an answer that they hadn't thought of. So I guess my point in all of this is that it's it's not unusual. And I think that that's a that's an important thing with this entire concept of the holding together kind of podcast is to let families know that this messy, sometimes icky journey that you're you're you feel like you're stuck on, you are not alone. There are lots of people out there. You can come here and listen to us, you can go talk to other people in our communities or people that you know, and you could probably get some answers of how people on this journey have done it before. But Stephanie, does it feel to you like this no wrong door concept is for real? Does it feel like it fails spectacularly for families who are actually looking for help?

SPEAKER_02 7:35

I mean, I I think it can. There is no wrong door to try, but getting it open is hard. I mean, you call or are you getting calls back? Is there a wait list? Are you following up once, you know, as that wait list goes, or it's kind of put them on the wait list, forget about it, move on to the next. Um, I think it's it's very challenging to find something that's appropriate for certain clients and getting somewhere, right? So a lot of our clients work with Demus and I hear the acute hospitals making referrals to Demus and getting them in that door, but we don't always hear about the clients that are on the units that maybe aren't appropriate for Demus or don't ever get through that door of starting to work with them to access all these resources and they're put back into the community with kind of the family to pick up the pieces and continue to work on getting them what they need to get to a more stable place. So I could see it being a very frustrating process. And as Sarah's point too, with the calls we get in our office, I've had numerous family members asking questions about another family member or a friend that has a loved one that needs services, like just looking for guidance or to point them in the right direction numerous times. And I don't always get the follow-up on how those suggestions went or where they are now. But I could just imagine, you know, their pure desperation at that point and looking for some answers from anybody because they're probably not getting them in other areas.

SPEAKER_01 8:54

I wish sometimes you would just get a phone call back and said, Hey, thanks, man. That really, that really helped. Actually, sometimes we do sometimes we do.

SPEAKER_02 9:01

Sometimes we do. But like in the interactions where you meet people, like I actually um one of my clients had passed away and I went to his funeral on the the bereavement kind of lunch, and there was somebody I was sitting across from that was just picking my brain about their loved one. I did give them my contact information, never heard from them again. So, you know, I don't I don't know where it went from there. But, you know, to be in a setting like that and and just to ask me, I could understand, you know, I could assume that at that point she was probably like that didn't know where to go from there.

SPEAKER_01 9:31

I just I think that one thing I wanted to point out, Sarah. I'm sorry. Stephanie mentions Demus. In our parlance, that means a Department of Mental Health, everybody. So Demus to us is a Department of Mental Health and Addiction Services. We call it Demus all the time. So what were you gonna say, Sarah? I'm

Promising Programs Nobody Hears About

SPEAKER_01 9:49

sorry.

SPEAKER_03 9:49

So I just want to add though, I think I want to give Connecticut specifically kudos for the initiatives that Connecticut has tried to put in place. Like Michael and I have traveled all over the country, and I feel like Connecticut has top-notch mental health services. And the initiatives that Connecticut has tried to put in place are pretty, I think, pretty innovative in trying to catch folks in that safety net. So, like one of the things was the first episode of psychosis. So you can call this number if your child was having a first episode of psychosis between a certain age range, age range, and they would fast trap that person into services. Another thing is the hospitals were trying to hire navigators so that, like Stephanie was saying, once you're in the hospital or the ER, the client falls in the crack and you know, it never makes it to the referral. And so these navigators are supposed to be following people through. I think the issue becomes with system overload, and I know we're gonna get there, is these are great ideas in theory, but if they're not consistent in the practice or the information is not out there to the general public, and everybody's not promoting it, then it just leads into this web of confusion. And that's what I've seen. So when families call me, I say, Did you know we're doing this? Did you know we're doing this in Connecticut? And they've had no, they had no idea.

SPEAKER_01 11:14

Yeah, I think that you you you touched on this concept of systematic or institutional culture that needs to be pervasive. And unfortunately in some places it's not, and that goes to consistency and it goes to commitment, which I also want to mention here in a few minutes.

Discharge Gaps And Referral Dead Ends

SPEAKER_01 11:31

But we have this overlap here with two different systems of care. They're the same system of care, but they're they operate very differently. So we have our hospital settings, and we also have our our outpatient community-based service systems. And again, I I I want to say that these people do a good job. They really care, they really want to do the job that they're supposed to that they uh spent their lives, their careers, their education you know, setting themselves up for. But sometimes you definitely feel, and I I this maybe not be so true with the the the smaller agencies, but sometimes you definitely get a sense that there's this kick the can mentality. We can't handle it here, go see this guy. And then you go see that guy and says, go see that guy. And you kick the can down the road, kick the can down the road. So that's one side of it. The other side of it is is the concept of these discharge plans that are not really well thought out, they're not really cohesive, and they're not navigated or coordinated by us or the hospital navigators that I really hope works, and I really hope they they implement some of the things that we've created for the last 25 years or however long it's been. Because I do think that there are a lot of discharge gaps. One of the things I mentioned in the opener there is this idea that when a person's being discharged, you know, hopefully they're going to be discharged to a team of providers in the community. But as Stephanie indicated, that is not always the case. There's going to be discharged right back to home, and mom and dad are sitting there saying, Oh, what now? Oh, good. They gave us a list of people to call. This vetted, allegedly vetted list of resources that that they're handed. And I I'm not trying to pick on hospitals or hospital social workers, but this is this is a reality. This happens in all kinds of big institutions. Well, that that list hasn't been updated. So you go down these dead ends. You know, I was looking for something yesterday, the business was completely out of, it didn't exist, it was completely out of business. So what about these these hospital or discharge gaps, not necessarily even just from hospitals? What what when you have people that you're meeting for the first time in the communities, because this is what you guys are doing that I'm not doing, okay? And this is why this topic is complicated for me. So I'm going to learn from you guys as much as the the audience is going to learn from you about what the realities are. When families are given these numbers, do they, Sarah, do they do they ever result in a in a home run and in a hit the first time you're making a phone call?

SPEAKER_03 14:27

I I think it depends. And again, I think it depends on who's on the other end of that phone. So again, I know we touched upon this in previous episodes, but when you're calling, get the person on the other end of that phone interested in what you have to say. Because you're one of 200 people maybe that they talked to that month with similar stories and similar, you know, things going on. And so unfortunately, you have to get people interested, right? So I think sometimes it does, but I think a lot of times because the system is overloaded, what you're gonna hear if there's a wait list is we have a wait list, here's another agency. And again, after you get to the third agency, you're pretty much given up, you know.

SPEAKER_01 15:18

Yeah, unfortunately. And and guys, just so you know to our listening audience, there are meetings every single week among these groups of providers. So in one city, you know, one one catchment area, let's say, you will have all the providers theoretically, as many as can get there on a weekly basis. And they get together and they have this utility management meeting where they discuss what openings they have, what openings they don't have, so that they can share with each other, you know, we're we're ready to take on new clients, we're not ready to take on new clients. This does happen behind the scenes. It may it may seem like it doesn't to a lot of people who are hitting this brick wall, but but these things are going on.

Vetting Resources And Asking Better Questions

SPEAKER_01 16:04

Stephanie, uh if if you were a family or you got this list of people to call, so if I hand you a list of of uh quote unquote vetted resources, what would be the questions you would have back to me, or what would be the first question that you should ask the people who are these alleged resources?

SPEAKER_02 16:27

Asking back to you who handed me the list?

SPEAKER_01 16:29

Yeah, or even what would be the first question to that alleged perfect fit resource.

SPEAKER_02 16:35

Oh, I would probably first ask, do you have any openings? When can you take this person? And then go into like the history and everything, you know, also who is most recommended. Sometimes I feel like you're given a list of 20 resources, and like you said, it could be outdated. Do they still have funding? Are they still open? Are they still highly recommended? You know, hands change over years and the the experience that people have with them may change as well. But I think as if I was in sheer desperation, I would want to move through that list as quickly as possible. So probably my first question would be do you have openings? How how quickly can you take my loved one? And if it's a year out, maybe okay, maybe I'll call back and you move on to the next. Cause I wouldn't want to sit there and tell the same story over and over and over again just to be at the very end and be told, oh, our our wait list is a year long. You know, to me, that seems like if I'm that urgent and trying to get services, that would be a waste of my time.

SPEAKER_01 17:29

Yeah, and that urgency that that the family feels. This is another thing that I have to stick up for the service system. You know, when we go to you, when when we family members go to the service system and ask for help for our child, that is the most pressing issue, the most important file in the world. Nothing else should or could take precedent over that phone call. Unfortunately, reality is that the agency that you're calling has a thousand of those people whose family members all think it is the most important case, it is the most pressing issue. I don't know if you guys can hear my dog barking at nothing. And and and that's a hard one for us family members to accept and and to to think about and to realize that wow, there are a lot of other people out there. And if there's one lesson to take away from a lot of these podcasts, is just that. There's a lot of people going through the same thing that you're going through. You're not alone on the journey. Did you want to say something about Stephanie's point to her?

SPEAKER_03 18:46

Yeah, I just wanted to say one thing in terms of like a tip of the trade. You know, I know we we give little tips along the way. If the person is inpatient, it's it is more than appropriate for you to be asking the social worker to make the intake, the appointment to wherever they're referring to. So if they're referring to a nonprofit, if they're referring to a state agency, it is more than appropriate for you to say, I need you to make this appointment, you know, within the week. So that's one thing. The other thing in terms of like, you know, getting services, and I really feel like parents, family members, sisters, brothers of these adult, of these adult loved ones need to do the homework and figure out what their best agency request is gonna be. For instance, some of the hospital programs that are intensive outpatient programs, IOPs, they don't offer case management. They're gonna offer med management, they're gonna offer therapy and groups. If your loved one needs case management, you need to vet some of these agencies and do the homework online and find out what services these agencies offer. Then we're gonna get to that for sure. Right, but then advocate for the one you want instead of looking at the 10. So unfortunately, some of this is gonna fall on, you know, doing your homework and I don't think that there's anything wrong with saying that.

SPEAKER_01 20:05

I don't think it's unfortunate at all. I think we all have we all have things that we need to do and we need to take the onus upon ourselves in life, and this is part of it. And it's an unfortunate part that none of us ever asked for, and yet here we are. And we we've gotta we've gotta put pull ourselves up by the bootstrap sometimes. I think that's fair. I love your point though, about when you have an inpatient setting going on. I've gone through this with my family of late, with uh an aunt who was hospitalized, and the social workers kept pushing her sister to you got to get her a place, you got to get her a place, you got to get her a place. And my social worker friends, my my hospital-based social worker friends are gonna, or case manager friends are gonna hate me for this, but their job is to help you to find appropriate resources while it while you have an inpatient setting going on. The only other thing I would I wanted to add to what Stephanie was saying is when you're handed this list by that social worker or whomever in the hospital or an inpatient setting or even an outpatient setting, I would ask the person handing me the list. Have you worked with these guys? Do you like them? And here's a good one. Who do you know there that I could reach out to? Because people love to be, whether we want to admit it or not, we love to be contacted and ask for help. It makes us feel good about ourselves and our ability to help other people. Don't be afraid to ask. That's one of the hardest things for people to overcome is this idea of asking for help when you need it. And and what you find is that there's a lot of people out there that are just waiting to be asked. They they've got their hand up, they're waiting to be called on. What's what's the I don't know if I want to I want to hear horror stories necessarily, but what is the the taxation that this puts on a family, Sarah? What have you seen? Seen in terms of I I Stephanie said it. We just give up, you know?

SPEAKER_03 22:04

Well, I I think we see a lot of hopelessness where sometimes I'll get someone on the phone and I'll say, okay, let's try this. And they'll say, Well, I already tried that. And so every every resource that I give them, they've already tried. So they they've just given up. And so I'll I'll have to redirect them and say, Oh no, you haven't called this person yet. Call this person. So I think what people also forget is as they're in the throes of it, that there are people, like you just said, Michael, that really do want to help. So if you get an intake worker who really could give you no time at all, I think the higher ups would like to know that. And I'll give you a perfect example. I had a client who was trying to access uh substance abuse resources inpatient andor residential. And the person that was helping them try to find a bed was kept hearing, oh, we don't take people who are conserved. We don't take people who are conserved, which is which is the furthest thing from the truth, right?

SPEAKER_05 23:02

So right.

SPEAKER_03 23:04

So if you're a family member and you're hearing, oh, we don't do this, but it says it on their website, it behooves you to call the next person higher up or even the highest person, the CEO. So I know for a fact that this particular agency that she's referring to, one of them, that the CEO would be mortified if he heard the intake person say that. So I reached out and let them know. Of course you did. Of course I did, because because we all have to hold our systems accountable. I I would want to know if one of my workers was saying something that was not accurate. But how many times does the CEO not know what the the ground people, you know, the the boots on the ground people are saying? It happens, it has happened here. So it happens. So, you know, when you see something, say something. But that would be a family member who would just say, oh, they don't take conserved individuals or oh, they don't take, you know, my person. So let me, you know, move on to the next. And sometimes that's not always the best solution is to move on to the next. Sometimes it's to, you know.

SPEAKER_01 24:04

I think that you mentioned something else where we have family member, let's say they've done their work, they've they've they've gotten their list, they've gone out, they've done more research, and they found other agencies and services that may be appropriate, and they've called and they've taken tactic A when they call, and they get shut down. No, no, you know, and then very often they call us and we'll say, Okay, you try tactic A, but here's a better way to address this, to try tactic B. And that happens a lot with our agency in particular, and a lot of other professionals who are doing this kind of work, are saying, Yeah, A isn't really the way that they want to go here. If you if you hit their soft spark, their soft white underbelly is B, go with B. And and that's practice, but it's also like stick to itiveness, don't give up on it. Stephanie, I'm dancing around something here because I don't want to necessarily come out and say it, but I'm gonna see if you say it so I don't

Crisis Pull Versus Proactive Care

SPEAKER_01 25:04

have to. Okay, you ready for it?

unknown 25:06

Sure.

SPEAKER_01 25:06

I'm setting you right up. Okay. How stacked do you think the cards are against people who are not or in favor of people who are not in crisis versus the crisis cases?

SPEAKER_02 25:22

I think that you have a lot more pull when you are in a crisis situation.

SPEAKER_01 25:27

Really?

SPEAKER_02 25:28

I do. Some depending.

SPEAKER_01 25:30

Depending Well, that's no, that's nice. That's actually nice to hear because I think the exact opposite. So I'm sending it.

SPEAKER_02 25:36

Clients that are in crisis in the moment get the attention in that moment. So obviously, you know, the resources we have, the mobile crisis, you get them to the hospital. You there's a lot more that can be done with the client that's inpatient and in the hospital versus in the community. We run into that all the time. You know, a lot of opportunities we try to jump on for certain clients we do while they're in the hospital because you don't have either the client's willingness or the system in place to do it when they're in the community. So sometimes I feel like the clients in crisis might get a little further than the quote unquote, you know, getting by clients that are still having the mental health issues, still need more supports, but are not like forwardly in crisis that people are giving all their their attention to. And that's just my opinion.

SPEAKER_01 26:24

Well, no, I say I agree with you backed it up with you, you backed it up with great anecdotal evidence. I I and and Sarah will remember this case. This is from oh man, ages ago, 20 almost 25 years ago, probably, where I really went apoplectic on on an agency that I thought was cherry-picking the easy clients. So, in my mind, again, my cynical side is always winning out and you know that war between the two sides. My cynical side is what comes to the front. That's why you guys are good at what you do, and I'm good at what I do, I suppose. But I don't like this concept where I feel like people are cherry-picking. They want to deal with the easy clients and not deal with the hard clients. And I'm happy to hear that that you and and it's not always a matter of holy cow, this is a crisis right now. We need to fly into action. I think sometimes the crisis can be the alarm that that that the system needed to say, oh wow, we really should have been doing a different plan all along. Let's implement that plan. And I think that I hope that that's part of it. I'm sorry I interrupted you as usual, Sarah.

SPEAKER_03 27:39

Oh no, I interrupted you. So you know that that's messed up.

SPEAKER_01 27:42

I'm used to that.

SPEAKER_03 27:43

So I just wanted to piggyback on what Stephanie's saying. To me, I mean, I that's my experience too, but it also is a mixed bag of feelings for me because sometimes the folks in crisis are getting the attention because we're as a system, at all of us, when we're overloaded, we're reactive instead of proactive. And so I think, you know, it's great in the moment we're getting, you know, things moving. But wouldn't it be nice if we, you know, when we saw the writing on the wall a couple weeks ago, if we could put in some approaches that would be proactive that would not lead to ER. And then so again, I feel like it's kind of a double-edged sword sometimes.

SPEAKER_01 28:23

It is, it's two sides of the same coin. And the third side of that coin I want to get to now when we talk about system overload, because you've mentioned system overload a couple of times. Okay. Welcome

System Overload And The Edge Cases

SPEAKER_01 28:36

to our system overload segment where we talk about the clinical need exceeding the infrastructure's capacity. We're looking at the, you know, the blown fuses, the revolving door uh discharges, the 400-mile record gaps, and and data blackouts. This is where we stop asking how the patient is doing and ask more about why the big machine is glitching, why the machine is breaking down for that particular patient. So based following through with Sarah's analogy, we have the people who are in crisis getting care, the people who are not in crisis getting care. I don't even know how to say this right, but we're responding in reactive mode to acute moments of crisis very often. We all of us do it in every single facet of our lives. It's no different in big care giving service systems, okay. The other side of that coin is when you have this system that's almost effectively waiting for the catastrophe to happen before they'll act, or the system that says, or you're stuck somewhere in the middle between those two sides of the coin. You're you're on the edge of the coin. You're saying, well, my loved one is just good enough to stay in the community, or they're just too sick or or disorganized to go into this program. That is abundantly frustrating for people. And we've seen it. Can you talk about that a little bit, Sarah?

SPEAKER_03 30:21

Yeah. So, I mean, we have a we have a case right now that we're working on right now. We had to push, push, push to get the person inpatient. He he is not doing well and not on his baseline. And then the hospital doesn't know him. And so they say, Oh, he's great. And then our worker goes up and he's not great. And we have a bed for him in a residential substance abuse treatment program, but now the hospital doesn't want to wait for the bed. And so what we're gonna end up doing, and again, this is very reactive. So the hospital's gonna discharge him, he's gonna, you know, have a rough time ago of it again. We're gonna try to get him back in and hope that they keep him for the bed. I mean, and if we just did the proactive approach, which is work together, wait the week, get him in the bed, you know, how much, how much, how much trauma would it save him, right? And how much more effective would it be in the long run? Because, you know, in the long run, he just needs a little bit of time, right?

SPEAKER_01 31:21

We should talk about that, not today, but in another episode, I think, about the realities that Medicaid forces our hospitals into, the realities, the the hospital beds and what and the pressure that they feel to move people on, as well as the doctors and their professional ethics and things like that. I think those are important topics that you you bring up here, and we should consider that along along these lines. But one of the things that you did mention that here comes a shameless plug. When you use a tool like our care give our caregiver uh app or our care care navigator uh journal, it really helps the the staff in the facilities to understand what a true baseline for the individual is. I was talking to a friend last night and she says she has a young son. Well, he's 24 now, but he's got severe, he's severely autistic and he has medical issues. And she says she actually has videos that she keeps as part of what she calls her her letter of intent, quote unquote. And and she so she shows how her son is this happy-go-lucky kid who likes to sing dirty songs just to get her eyes out of people and things like this. And you know, it's fun, it's funny, but it shows that this here's what he's really like. Yes, hospital, you think this guy's good. And we we've seen this a million times where it's no, this is not baseline, trust me. This is not baseline because I use this analogy a lot where I use my bathtub analogy that you you've probably heard a million times, where if we have a bathtub that's full of water and and and somebody takes the drain out and it goes down, you know, a quarter of the way, well, we could turn on resources and get that water back, that water level back up pretty readily. It's when the the tub gets drained and is completely empty that it's hard to get things filled back up again. And that's that's the baseline. If you think of the water line is the baseline of people operating, we don't want them to get to the empty tub. We want to be able to keep them in a place near the near baseline. Baseline is good in a lot of ways, and I'm not saying that we should rest at baseline, but baseline is where we all function. Yeah, Steph, did you want to add anything to this? To this, I I I and if not, that's fine too. I just I think that this is important because we're not always going to wait for catastrophe to open doors, right?

SPEAKER_02 33:52

No, I don't think so, but I think in certain circumstances we are put in a position where we have to. I, you know, to Sarah's point too, I have I I've talked about this client before, but the one that we're trying to get into a state hospitalization because her level of care in the community is not appropriate and she continues to go into acute hospitals, and we're just waiting for the right the correct decompensation and doing it just doesn't feel good to continue to do that because it it's traumatizing for the client and you know it's it's exhausting to continue to do over and over and over again. And there have been times that she has gone to hospitals that are not her typical hospital because of bed availability, which is even more difficult because they don't know her, they don't know of the struggles we've all gone through. So they're kind of cleaning her up, stabilizing her, discharging her quicker than the other one even would, at least they're open to conversations. But it just it doesn't feel good to me putting her back into the community and just saying, okay, let's see how long, you know, until she decompensates again and maybe this is our time. So in that circumstance, you know, we do wait for crises, crises to happen.

SPEAKER_01 35:02

And I love what you said there. It's like we're waiting for the but we're waiting for the right type of crisis or the right type of catastrophe.

SPEAKER_04 35:09

Yeah.

SPEAKER_01 35:09

And it's that's right. You know, you're absolutely right. And that brings us back to what Sarah's point was about waiting for the next time this guy does the same thing so that we can involuntarily commit him under the medic uh the uh statutes. Yeah, wait, waiting for the next time around, being sure that there is going to be a next time around, you know, unfortunately, that's that's a horrific place to be.

SPEAKER_02 35:34

Well, of course, that's that's a big thing for me. It just doesn't feel good because I know it's coming. I don't know when, and I don't know, even if that's so at the right time when it actually like happens, and we're able to follow that all through, could be 50 times from now. You know, I'm not saying it's the next time, it could be way far down the road. And yeah, that's the sad part.

SPEAKER_03 35:55

And I just want to add too that during those times of crisis, you got to jump on it. Whether you're the family member or if there's providers that are listening out there right now, you gotta jump on it. You can't wait, you can't say, oh, okay, they're in the ER. No, you have to call and and plead the story because that again, whoever is looking at that person is looking at one moment in time. And so if you don't jump on it, it's gonna be another missed opportunity. And I know, like Stephanie for this person, she jumps at it every single time. She gets the whole team to jump on it. And then when they go inpatient, if you're lucky enough, if they need inpatient and you're lucky enough to get the hospital to agree, go up to the unit, take a look at them. Don't wait for the day of discharge when the team has already made up their mind. Be a participant in the process because it's gonna be short. It's gonna be short. So get up there and be a part of the team.

SPEAKER_01 36:51

I think that very often what happens, I've spoken about this in talks I've given around the country. I think a lot of times what happens for all of us that are in the system, including the family member, is when there is a moment of crisis, let's say, that leads to an emergency room visit, that leads to hospitalization. Many families and many providers in the community say, It's an example. Now I could take a breather here, I could take a step back and I could take a rest. That is not the time to take a rest. This is the time to rally the troops and figure out what plan B is going to be.

SPEAKER_03 37:34

That's right.

SPEAKER_01 37:34

But and and and this goes to the concept of burnout. It goes to family burnout, it goes to caregiver burnout, and it's a very real thing.

Burnout On Both Sides

SPEAKER_01 37:47

I hate to think, well, do you Sarah, do you ever think that this burn or the lack of response that families feel that they receive is due to burnout, and just I just don't have the bandwidth to be able to respond?

SPEAKER_03 38:04

I think it depends on each family. I think some families are taxed. Like, so for instance, if you're a sister and you're trying to get your loved one, your sister or brother services, you got a whole family that you're that you're that you're caring for, your level of energy that you can give to something like this may be limited. So I think for each family, it's probably a little bit different because for some families they want to help, but there's not there's not enough hours in the day. For some families, they will stay on the phone all day long and burn themselves out. And that leads to fatigue and a different kind of exhaustion. So I think it's all it's all independent.

SPEAKER_01 38:42

And there's different types of people, you know. I mean, my patience level is so low, and I, you know, I will just fly off the handle. But I was asking Stephanie, I was what I really wanted to know from Sarah, and that was great. I I'm I'm glad you answered it the way you did because that's an important factor that I hadn't considered. But I was wondering, Steph, what about the idea of the providers and these agencies and the burnout that they're feeling? Do you feel like sometimes a lack of response is because of the burnout in the agencies themselves and the in the care workers?

SPEAKER_02 39:15

I feel like you can. Like I feel like we all kind of have rough weeks where things are going awry, you know, every which way from numerous other clients. I also kind of feel like that crisis conversation we were talking about before comes into play for this too. You know, I have a caseload of 32 clients. So if client one through four is really in crisis situation, someone calls me with number five, you know, what where's my priority at that point? Like I'm gonna do my best to do everything. But there are sometimes clients that are really need the attention, the immediate attention, and yours might take a back burner with the that provider or clinical team. And, you know, I think everybody tries to do the best they can, but we are only one person, one system. There's only so much time in a day to get stuff done. And unfortunately, you know, things do get set aside and and kind of prioritized when all of that's coming at you at once. You know, I'd love to have one client in the hospital at a time, but that's not always what's happening.

unknown 40:12

Right.

SPEAKER_01 40:13

Yeah, think about that from that perspective, folks. You know, as Stephanie just brought this up, you know, I'd love to have only one client in the hospital at a time, but that's not our reality. And folks that are out there listening, you don't want to have your loved one in the hospital ever. So, you know, a lot of these providers, including our our office and our staff, has multiple people in the hospital. How do you think families can insulate themselves from this idea of we're not in crisis, therefore we're not top priority. So what do you think about that?

SPEAKER_03 40:52

I I have a good answer to that.

SPEAKER_01 40:53

I yeah, I know I think I know where you're going.

SPEAKER_03 40:57

I love the systems issues. I love, I love trying to make the systems better. Like that's one of my passions, and it's one of the reasons that I, you know, love this agency so much. So uh a fair solution is, like Stephanie said, you're gonna have workers that are gonna have some workers out there in the mental health field have 60 cases that they're working on at any given time. So you're gonna have weeks where maybe that worker that you're working with isn't gonna get back to you right away. I think if if that's not the consistent thing, I think you work with the worker. I think you really try to work with the worker. Stephanie has excellent relationships with all of her conservators and family members, and they all sing her praises. So if she's having an off week, that's all it is, is an off week, and she circles back. If you have an apathetic worker, and I like to use that word because I see a lot of apathy sometimes in social work, not just in mental health, but apathy all over, you know, in terms of it's just you're burnt out, you're you're tired, you're I I have zero Fs to give about this, right? Okay, right. But right, but if you see consistent apathy, you're calling, you're not getting a call back. The worker's saying they're gonna do something, and they never fall through. That's a time to bring in the supervisor because I know like when I get calls, I get I joined, you know, I'm on the team. So the supervisors are also on the team. And so I think bringing in the next level isn't a bad thing. It's maybe, you know, another eyes to what's going on.

SPEAKER_01 42:30

Yeah, you are. I I I just knew you were gonna go there.

Escalation Without Becoming The Enemy

SPEAKER_01 42:36

And and that's enough, that's the very first topic that I've identified in our cracks segment when we talk about the cracks in our systems. One of the things that I wanted to add to what Sarah just said in terms of giving your worker a break sometimes, and you know, because they could have a bad week too. And what really helps people stay in the mind, the forefront of the mind with regard to their loved ones' case is becoming an ally to the workers that are on your case. Be their be their friend, number one. And I guys, uh another cliche I use all the time, the squeaky wheel does not get the grease in this world. Don't be the pain in the ass because the pain in the ass, squeaky wheel gets shoved to the side, put in the back of the garage, and never gets fixed. I'm sorry, that's the truth. You need to become an ally, and more importantly, you need, and we're gonna talk about that here today, become a valued and respected and important member of the team of advocates and caregivers for your loved ones. So while I knew that Sarah was going to go to the idea of going up the food chain, which is exactly what you just said. There's a there's a few ways to do that. So I guess the first question then, Stephanie, is how do you go up to food chain? Because you can't always find the phone numbers of of the supervisors or or things, right? So that may not be so easy. What how how do you talk to well? I mean, you don't have to taught tell your clients how to do this. You do it for them. So what do you do?

SPEAKER_02 44:24

So the easy ones, normally it's in the voicemail, right? If you can't get me, call my supervisor. Here you go.

SPEAKER_03 44:30

Um at Caritagan, we always include the supervisors.

SPEAKER_02 44:33

There are other agencies that do the same thing too. It'll leave their supervisors' phone number. But what you wish for. Yeah. So not on Stephanie.

SPEAKER_03 44:40

Listen, Stephanie's wonderful. So I don't have to worry about anybody calling your supervisor.

SPEAKER_02 44:43

Yeah, nobody's calling my supervisors. Don't worry about it. But that's the easy one, right? So and I think also with us, we are very well established with the services, like the agencies we work with. So we kind of know the food chains. You can go on the websites, you can call the front desk and ask for a supervisor, a director. If they're on a hospital unit, can I speak with the nursing director? Can I speak, you know, just using the right terminology to get kind of who you want? Like I whoever is overseeing this case, you know, or like a director, something like that. I would be my go-to majority of the time. I do like to have people give people a chance to call me back before kind of going around them. But sometimes you need an answer in a very timely manner, especially if they're at the hospital. I don't have the time to wait until next week for you to get back to me. That client might be discharged before I know it. And then my opportunity is gone. So just calling like the different numbers, seeing who you can get. And if you do get somebody that happens to answer the phone, you know, ask who you can speak to. That's the highest person on the team. Just doesn't hurt to ask.

SPEAKER_01 45:50

No, no, it doesn't hurt to ask. And you're absolutely right. There's so many, there's a lot of different ways to go about it. I think that people have a reticence and a fear of kicking things up. And by the way, you don't just do this because you're impatient. Nobody likes it when you go over their head. Nobody likes it when you go behind their back. Stephanie just brought up a great example. You know, we have a we have a client who is in the hospital right now. I can't wait for you to get back from your two-day vacation. I gotta kick this up. I gotta talk to somebody. We got to move this now because if we don't, we're gonna lose opportunities. The the alcohol and drug statutes, a perfect example that Sarah brought up earlier. We we have a bed that's coming available next week. Can you wait? Can you work with us? You know, and and that's that's an example that we see a lot that probably most people won't see. But we need there is there is a degree of urgency. And sometimes when that's a real, not everything is urgent, not everything is an emergency, but but when there is an emergency, we need to know that. And I think that that families need to take a deep breath sometimes and say, you know, what level of emergency is this really before they get themselves all tied up in knots and worked up about it.

SPEAKER_02 47:14

I think that's where the families sometimes struggle, though, because it is your loved one. So to you, everything is emergent. You know, maybe to us in the professional setting with the experience, that's not a level 10 emergency. But as a frustrated mother, sister, loved one of somebody else that isn't getting anywhere, that could be very emergent to them. But I think your point too, that the squeaky wheel doesn't always get the grace. So if you're that kind of pain in the butt person that's calling all the time and kind of rude and not, you know, uh abrasive, people aren't always gonna want to willingly work with you.

SPEAKER_05 47:49

Yeah.

SPEAKER_01 47:49

And I how much as you've seen, often talk about this concept. Well, exactly.

SPEAKER_02 47:54

It's not on the top of anybody's head.

SPEAKER_01 47:56

No, I want to look at the goals there. Sorry. This is our segment that we call the cracks. These are the invisible blinds. Where families lose their voice and patients lose their way from rigid privacy barriers that isolate loved ones to financial abysses, yes, uh, which are always halting progress.

SPEAKER_03 48:16

You didn't do this. You didn't do that. Why are these gaps here? And who is falling through them?

SPEAKER_01 48:22

In this segment, we stop looking at the person who fell and start inspecting the holes in the floor that they were forced to walk.

SPEAKER_03 48:28

You have to say, you know, hey, thank you for doing that. Thank you, will go a long way. Or, oh my God, I really appreciate it. And I'm so you know, thankful that you're kind of in this with so that kind of stuff will go a long way. I'll give I know we're late on time, but I give I'll give a perfect example. Yesterday I had my car battery died. And I was so mean to the triple A person because they couldn't find my car and I was in a rush and I had a meeting. And like that was like not the approach because once, you know, once I kind of calmed myself down and and just, you know, took a deep breath, um, he ended up giving me the battery for free under my warranty. And so again, you know, like the squeaky wheel doesn't always get the grease. And sometimes a little kindness and a little understanding about you know other people's situation goes a long way.

SPEAKER_01 49:20

You attract more bees with honey, Sarah.

SPEAKER_02 49:22

Yes, I was just gonna say that. Being personable and appreciating, it'll get you further.

SPEAKER_03 49:28

My point is we all follow it, we all get into it. So when you are in a crisis mode, you know, it's hard to take a step back and say, okay, what am I grateful for? That the, you know, who is helping me that I'm grateful for, but I feel like we need to do it.

SPEAKER_01 49:41

I don't know about I I never get into those situations where I don't know.

SPEAKER_02 49:46

Oh yeah, never. I'm sure never.

SPEAKER_01 49:50

A couple of things I think that are that are low-hanging fruit right now that we can certainly offer to people. The at the old adage, if it's not written down, it didn't happen. When you have these situations, write it down, document it. And and later on when you're having a conversation with the supervisor or even even when your case manager is back on a good day. Hey, you know, the other day, here's what happened, and uh let's talk about how to how to address this in the future. Sarah is wonderful at this. From the case manager's perspective, now looking toward a family, Sarah's really good at setting boundaries with with clients. But sometimes I think that it's okay for clients and families to also say to a caseworker, you know, you didn't call me back for three days. That's not cool. Okay. And so I think boundaries go both ways.

SPEAKER_05 50:41

Yeah.

SPEAKER_01 50:41

So and and so write it down. Keep keep a log of it. And hey, if this keeps happening, Sarah's old adage, kick it up. Use our send it up.

SPEAKER_03 50:51

Michael, use our carekeeper. Our carekeeper is a wonderful resource for writing stuff down and keeping things organized.

SPEAKER_01 50:57

The Carekeeper journal.

SPEAKER_03 50:59

Yep.

SPEAKER_01 50:59

Yeah, right.

SPEAKER_02 51:00

There is a little trick I want to say. Sometimes I use when I'm about to call a supervisor. I'll leave like my last message for the case manager, whomever, and I'll just say, Oh, I'm not sure if you're on vacation. I've been calling a couple times and I haven't gotten a return call. So I'm gonna call so and so. And then and I give them a minute because normally when they get that call, they're gonna call me back before I get to their supervisor. But also, I told you I'm calling in a confused, kind of nice way.

SPEAKER_01 51:25

Yeah, backhanded sort of yeah, well, backhanded passive aggressive way.

SPEAKER_02 51:29

I don't know.

SPEAKER_01 51:31

All right, so here's another one that Sarah and I learned very early on, and we talked about this, I think, in our very first episode of Holding It Together kind of podcast.

The Probate Court Pivot

SPEAKER_01 51:42

Very often our clients are involved with the probate court systems because probate court typically has jurisdiction over guardianship, conservatorship, mental illness, no matter where you're living. If your loved one is involved in the mental health in the probate court system, if they're not, maybe they should be. That's something to think about. If they are involved in the mental health system, chances are very good that somewhere along the way, you may have forgotten about it or you may not have understood the relationship, but they have probably been appointed an attorney from the court. Or we know for a fact that there is a judge who is ultimately overseeing this case. The attorney that is appointed for your loved one is called the attorney for respondent, typically. You can do you could pick up the phone and call the clerk's office and say, Hey Cindy. Cindy was a clerk when I first started practicing, she was great. Hey Cindy, what's the name of the guy that you appointed to represent my daughter? What's the attorney's name and phone number, please? Click, click, click, click, they've got it, they give it to you. Next step, you call that attorney and you say, I am trying to do all I can to advocate for my daughter or my son or my my husband or wife. I'm getting nowhere. And here's what's happening, et cetera, et cetera, et cetera. And then leave it to the attorney for a respondent to come in and say, Hey, I'm calling this social worker who's been on vacation, you know, and uh we're not getting a response. I'm an attorney calling, I'm kicking it up. And not to toot my horn or to toot all of my brothers and sisters at the bar, but a lot of people do respond pretty quickly when they hear that there's an attorney calling. Don't use this all the time as a sledgehammer, but it does work. Sorry, you've seen this multiple times with me.

SPEAKER_03 53:45

Oh, I I use it too as a professional. I say I'm calling on behalf of.

SPEAKER_01 53:49

Yeah, right, right. Because a lot of a lot of the people we work with are attorneys who are acting in in this role as well. So I'm calling on behalf of attorney so-and-so, or I I've even gone as far as to say I'm a representative of such and such, the judge of probate here, you know, if if need be. And and that's not a lie. Frankly, when you're in big meetings with a lot of caregivers, a lot of times it's helpful for me as a lawyer to remind people that I have I have a different uh boss that I have to answer to here, that is the the judge. And if and if I go back and the judge doesn't like what he hears from me, he's gonna want to know and we're he's gonna bring us all in front of him. Nobody wants to go in front of a judge. So that's that's the one thing I I call that like the probate court pivot. Because sometimes using the legal backbone, the legal back end of things is is just that. It's a way to backdoor some kind of action. But when does it get to that point? What do you think, Stephanie? When does it get to the point where maybe that's not even a good question, but do you have any sense of it?

SPEAKER_02 55:00

For the families, like when does it get to that point?

SPEAKER_01 55:02

Yeah. I mean, I don't know how you get it because every case is probably so different.

SPEAKER_02 55:05

It's probably every case is different. I think some families have a higher threshold than others. I think the severity also depends. You know, I've had family members that have gone years and years and years and years advocating for their loved one and and probably had burnouts at points, but you wouldn't know because they're still working to get what they need to get for their person. But you know, I think I think it's really dependent on on each case and also how severe the client is. You know, if you're getting to a point where it's really unsafe and it it the family member just can't care for that person anymore, maybe it takes that. I, you know, I don't know.

SPEAKER_01 55:42

Yeah. No, I I think it's an unfair question because every every case is so different. So I apologize, but I'm glad that you said you said what you did.

SPEAKER_05 55:50

Yeah.

Proactive Habits Plus Real Self Care

SPEAKER_01 55:51

One last point that I want to make here before we we finish up is that we talked about this idea of educating yourself and you know, our own caregiver burnout, our own family burnout in running into walls. How many times am I going to run into the same wall before I just give up? And I had an interesting conversation with another woman that we know who also has a special needs child. She's involved with special needs work. And and I had lunch with her and I was asking, you know, I have all these resources, I got all these tools, I got this podcast, I got, I got this care navigator journal that we want people to take, and and these classes that we want people to take. And what's going on? I can't get anybody to raise their hand and take it. She she looked across her salad and you know, just like looked at me. She's just exasperated. She's like, you know, sometimes when I have a calm moment, I just want to have a calm moment. I need a calm moment. I need to have a glass of wine and chill out and not get more educated and not and not listen to a podcast about this stuff. And that's very, very fair, Sarah.

SPEAKER_03 57:05

Yeah.

SPEAKER_01 57:07

So I think, but, but, but, but I think that what this can also lead to is the apathy sometimes falling into that pattern. I think that it could also lead into the reactive mode that we want to avoid. So the the best time to have a map is before you go into the woods. So I highly encourage you guys to educate yourselves, get coached, get trained, take advantage of the resources that we have to offer and other folks out there have to offer. Get the big word, Sarah mentioned it earlier. The big word is get proactive. Do not stay in a reactive mindset. Get proactive about this stuff. And yeah, when you have that downtime and you've had that glass of wine, hopefully the next morning you could wake yourself up and say, okay, things are still quiet. Oh my goodness. Let me look into a couple of things. Make a checklist for yourself of things that you don't know. You know, what do I want need to know more about? These are just helpful little hints for you all to keep your mind fresh, keep you moving forward because we want this ball to constantly be moving forward. So, do you have any closing words of wisdom, Sarah, based upon our conversation today?

SPEAKER_03 58:29

Well, I guess one of my clothes, you know, you just kind of brought it being proactive does not mean yelling the loudest or or calling the most, or I think, you know, educate yourself. And again, it may not be every day, but pick a quiet time, maybe in the morning, have your cup of coffee, get on your computer, make some phone calls, but educate yourself so that you can be the best advocate in your loved one's life.

SPEAKER_01 58:56

Do you have anything, Steph?

SPEAKER_02 58:58

You know, I think educating yourself is important, but also focusing on that self-care too. You're really not good to anybody else if you're not at your best. So giving yourself some time to yourself to wind down. You don't always have to be on the move and making calls and doing, you know, and if you need to take that one night of calmness, that's okay as well.

SPEAKER_01 59:17

Oh, absolutely. And I think somewhere in the middle of what you two have just said, I would I would also add that take a tool like the Care Care Navigator Journal, take a tool like a letter of intent. Think about getting the photos together, think about getting the video together that we talked about before. Because while this may feel unproductive, it's getting you in the mindset of being moving forward, right? Being being productive. It may feel unproductive, but you're actually being productive because you're getting your mindset moving forward. Uh, it's like they say one of the best things you could do every morning is to make your bet. It gets you in the mindset of accomplishment, accomplishing things. And I think that that more than anything, that consistency, that commitment to accomplishment uh is is really what will make the difference between the squeaky wheel and the the well-respected and accepted advocate. Great. Okay, thanks guys.

SPEAKER_02 1:00:24

Thank you. Thank you. Come again.

unknown 1:00:27

Come back.

Closing Keys For Breaking Through

SPEAKER_01 1:00:31

We certainly covered a lot of ground today. If there's one thing that's become clear, it's that the front door of our mental health system can be, can appear to be an illusion. But I I don't I don't know that it necessarily is. You know, we're talking about this no-wrong door myth. Um, the promise that basically says that um you you should always be welcome no matter what door you knock on, um, even if you try to knock on a hundred doors, you know, we looked at the the loop of despair where we uh just get stuck up in that that uh that referral carousel, leaving you wondering about whether you're ever gonna get out of the maze. But let's also look at a different perspective. If you're sitting right now in your car listening to me or your kitchen, you're hearing my voice, and you you feel like you are alone because you weren't able to get through the door, you gotta stop that recording in your brain. You have not failed. Lots of times the doors are locked. Today we handed you some keys to figure out how to get through those locked doors. We're getting you away from being a visitor in your loved one's care and your family's care, frankly, to being and re-regaining some control and becoming the manager who is capable of demanding accountability. Sometimes that means escalating it up. Sometimes it means pushing back, getting the probate court system, attorneys involved. Um, sometimes it means reaching out, hiring somebody to help you, asking for a family or a loved one or somebody with a little bit more expertise to help you. Um somebody who can do the heavy lifting when you're just too tired. You do have options, folks. But the system isn't gonna fix itself. We know that. You're gonna have to work and figure out how to make the system work within the parameters that you see as best. It's it is a machine. Sometimes, folks, you gotta grab the gears and return them yourself. You gotta educate yourself. I'm sorry, I do agree that there's time to have downtime, but you gotta stay on top of it. You've got to become an advocate. And sometimes you got to look for the open window. You gotta crawl into the basement if you have to. Get into that house any way you can. You gotta understand and remember that the person that's waiting for you on the other side of the struggle, your son, your daughter, your spouse, they're worth breaking down every lock, right? I'm Michael MacNiac. Don't just wait for the system to offer you a soft landing place. Sometimes we have to force a hole through that brick wall that seems like it's what's holding it together. Kinda. We'll see you next time.