This Is What It Takes with Michael Mackniak and Victoria Cuore. People Stop Seeking Help When The System Stops Listening

The moment “help” makes you feel smaller, unheard, or more afraid, something in the system has already failed. We sit with the uncomfortable reality that mental health care and hospital care can retraumatise the very people they are meant to support, and that one bad experience can shut the door on treatment for years. If you’ve ever walked away from an appointment more confused than when you arrived, you’ll recognise the patterns we name out loud.

We move from personal stories to system-level problems: patients being treated like diagnoses, families forced to repeat painful histories, and fear-driven interactions that escalate rather than calm. We talk about bedside manner as a safety issue, not a personality trait, and why trauma-informed care means changing how we communicate in the room. We also dig into how HIPAA is often misunderstood and used as a wall when it should be a framework for appropriate collaboration.

From there, we push into solutions that actually reduce crises: proactive outreach after discharge, coordinated aftercare, and persistent engagement when “no” is coming from symptoms, not true choice. We share a powerful crisis story involving an eight-year-old and what it looks like to build trust without interrogation. We also celebrate momentum for reform, including recognition for the Care Coalition model for crisis response and family support.

If you’re a caregiver, clinician, advocate, or someone trying to get help without being harmed by the process, this conversation is for you. Subscribe, share this with someone who needs it, and leave a review with the change you most want to see in mental health care.

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Transcript

Why People Stop Seeking Help

SPEAKER_01 0:04

Hello everybody and welcome. This is the This Is What It Takes podcast featuring myself, Michael Macniak, and of course the uh always omnipresent Victoria Cure, who is here with me and my partner in this podcast. We're happy to have you here. Today we want to talk to you about an interesting topic and and one that's really driving force between the partnership that Victoria and I have created, because people don't necessarily stop asking for help because they feel better or they got better. It's often they they don't reach out because very very often the help has hurt them in some way. Once that happens, all bets are off. They're not coming back, they're not looking for more help. If you've ever tried to get help for yourself or somebody that you love and you walked away feeling you know more confused, more in doubt, more overwhelmed, or at the worst case scenario, completely unheard, this discussion is for you today. Today we're going to talk about the part of the mental health care that almost no one is willing to say aloud, which is what happened when the systems that are supposed to help actually become part of the problem. More importantly, what does it take to change that? So let's jump into it here. I

When Providers Break Trust

SPEAKER_01 1:28

want to tell you guys that working in the mental health system for over 30 years, I've seen some really amazing things. I've also seen some really sad, tragic things. I and the first thing that came to mind in this regard was uh one mom who was I was asked to speak at a NAMI meeting, local NAMI meeting, and a mother was there, and she wanted support for her son, but she also was looking for support for herself. And she her her question to the group, I feel so it it gives me chills, just remember reminding me of this story. Her question to the group was well, my son was just diagnosed with, I believe it was schizophrenia, you know, like two weeks ago or whatever, six weeks ago, it doesn't matter. She basically wants to know what she can do, what she should do, and how long this is gonna last. And you know, being sort of the I don't know, the the guest speaker, the focus of the meeting, it was sort of fell upon me to explain to her that this is not something that just goes away, that this is something that you have to deal with and and set yourself up for for a long, long period of time. So, I mean, on a level we're here talking about trust, like when is that trust broken? And I don't know that the woman, this particular mom felt that the trust was broken, but I certainly said to myself, well, if they didn't tell her this and she's not aware of this coming to this meeting, when was she supposed to find it out? And how can she possibly go back to those people, those providers again, and trust, quote unquote, anything that they have to offer. So that's one example. Another example is a story that I've told on my podcast, the Holding It Together kind of podcast, and I shared with Victoria on her Contagious Smile podcast as well about how and why my agency started. And it started with a mom whose daughter was in six different hospitals over the course of nine months, and she bounced from hospital to hospital to hospital, from provider to provider, and had to keep repeating the story, had to keep showing up and seeing her daughter in the psych unit in the you know, the pajamas that they give her, had to deal with her daughter's trauma and her daughter's illness and the loss and the grief that that is, not to mention her own frustration and the loss and the grief that she was experiencing. So when I met her, she was in the middle of a knockdown drag out argument. It was really a one-way argument where she was just berating one of the workers at the hospital about what are you doing? You people don't do anything. I've told you this already. I you know the story. Here's her documents, here's here's what's wrong. We've never seen this in the family. This is her first episode, blah, blah, blah. And that to me was and still is the the main uh driving force behind why I do a lot of what I do. Victoria, I mean, you've lived this from the other side, you have been the the victim, so to speak, and in a lot of ways, you've also been that mom as a caregiver, pushing the system to do more. So you've you've got you've got a lot of basis covered, and I'm coming at it from not even the provider side, right? I'm trying trying to be a a systems radical here. So, what does it feel like when you're in that moment as a mom or as a as a as a I'm victim is a bad word, but you know what I'm trying to say.

Seeing The Person Not Diagnoses

SPEAKER_00 5:24

Absolutely. Well, first, this is such an important conversation to have, Mike, because let me tell you, as a mom, which is more important, is when you're in there and you have a child that is going through any kind of situation, whether it is an episode of schizophrenia, if it's a physical, well, it doesn't matter what it is, but when they come in and you have to go from doctor to doctor to doctor, and you have to tell the story over and over, it's detrimental to the child because they're hearing all of this negativity about them. They're thinking that they're not right, that they are not okay. And what it is, is it's not something that they did. It is something that's going on with them. It doesn't define who they are. It's not, but to them at that age, it does. I'm no longer faith. I am now somebody who has Pierre Roman syndrome. I am now somebody who is tracheologically dependent. I am now someone who cannot eat by mouth and has to have a feeding tube. It's not, I am a gorgeous, vibrant, full of life, full of hope, full of heart. Little girl who's been, you know, fundraising and raising toys since the age of four. People don't see that. They come in the room and they see diagnosis, they don't see the child, they don't see the person. And they come in and they just, even as a think about it as a parent, and I know you have kids, but when you have people come into the room and you have, for instance, well, I have all the experience in this aspect, but for a mom who has no experience in it, and they come in the room and they overwhelm you with these like huge words that people don't understand, they don't know what the definition of them are. Their child is scared, they're feeding off of the doctors, they're feeding off of mom. What is going on? And they are scared because something's going on in their little bodies that they don't know. The executive function in the frontal lobe of the brain doesn't even finish developing until 25. If it does, if there are cognitive issues, if there are cognitive development issues, if there's just a delay, then the the executive function might not complete format a formation. So, for instance, like our daughter, even though she's almost 20, mentally she's not. So even though they walk in the room, immediately the providers, and this is an issue, I think there's some amazing providers that I'm still great friends with to this day, but then there's some that you just want to send back to med school because it's like, where did you go to med school? Walmart? Because when you walk in a room and you see a child or a young lady or a young man, first of all, they're scared. I don't care how old you are. They're scared, the unknown is scary. It's going through and looking, and you walk in a room and it's automatically, oh, the charge says you're 20. Okay. Well, here's what's going on. But in her mind, she's like, I'm not following. I don't understand. You're scaring me. And then guess what? The blood pressure rises because of fear. Their anxiety rises, so they become tachycardic. All of these things start happening. So they think, oh, they're about to have an outburst, they're about to have a situation. Let's just give them Respiradol, or let's just give them Zolof, or let's give them some kind of band-aid to fix it, and I'll come back in 24 hours. But when you come back again and they start this process over, that's how white coat syndrome has been formed. Because you come in there and it's like before you come in, look at her stats the other 23 hours and 45 minutes. There was no tachycardia presence. What I used to do is I would say, can we speak in the hall? And we would talk about the prevalent issues that might seem overwhelming, even though they all do. And then say, if you want to examine her or whatever, come in and be friendly. Say, Wow, did you draw that on the wall? Did you put that picture up there? That's beautiful. How's it going? What are you up to today? Get to their level. Make sure they feel like I can trust, build trust with them. And then go back out in the hall and talk with the door shut so that they don't hear these things. And then let mom, dad, whoever it is, come in and decipher what they just overwhelmed the parent with. Because that really does make a difference in all of this. Because when you see a child, my my daughter was tired of being in the hospital. We were there at one point for a month straight. And when she's there, I'm there, I don't go home. I was admitted in my own well realm with her. I was right there. And she was like, I want to go home. I want to go home. I want to go home. And she finally was like, I'm out of here. And they're like, no. And she's like, I've had the same room. You won't let me out. I'm ready to go. They're poking her constantly. They're testing her. You know, she's eating out of a bag in her stomach. And she's done. She's a little girl. She wants to go out and play. She wants to, you know, not be in a hospital environment. And they don't let you sleep in there either. And so it's literally, they tried to come in and they're like, oh, we're gonna give her respiridol. And I'm like, what did you just give her? So I always ask prior to administration, what are you giving her? What are you administering to her? Because you need to advocate. Why does she need respiradol? You know, and then like when a doctor, I I am like the bulldog of advocacy, and that's why I advocate for special needs families as well. When a doctor comes in, you know, sometimes if you do get a passionate doctor, sometimes that can be misconstrued to a patient and a parent. And you want to look at them and say, Do you need respiradol? Because you automatically, without knowing my child, not just a case number, not just a patient you're rounding on, you went ahead and tried to sedate her. And that's not okay. And those are really big problems that need to be addressed.

SPEAKER_01 11:19

No, they certainly do. And you know, I mean, and not every example is as extreme and as outrageous as the examples that you just gave that of of your lived experience, I would say. Unfortunately, bedside manner does not seem to be a prerequisite to get your your medical degree, that's for sure. And you I've heard you and your husband, Mike, talking on one of your podcasts about, you know, read the little whiteboard that is up on the wall there that you wrote or your nurse wrote, or I mean, what the hell's the point of having it if you're gonna walk in the room and not read it? Right, right. That's number one, number two. But you know, we're not just talking about children. My father was in the hospital, uh, it's probably a year or two ago. And now, my father is one of the smartest people I know. I mean, this man is highly intelligent, he's highly with it, you know. He's he's he's just he's a very, very sharp dude. You don't get anything past him. And people were coming in there and they were talking to him like he was deaf and had like advanced stages of Alzheimer's or dementia, and I'm listening to them talking to him, and and you know, at first it was funny, and then it got to the point where, and you know, he was almost playing along too. Like he was sitting there being being funny and being silly with them, which is not him either. And finally, I got to the point with where I was just finally uh, you know, I was sitting there, I'm like, I don't know exactly what I said, but I made it pretty clear that uh the approach that you're taking right now is uh it's not doing you or him any good, and you really don't need to put on this dog and pony show. But but I think that brings me to the next point because uh it's very easy to sit back and say, well, the system's broken, the system is failing, the system's failing your daughter, they failed this in this incident, they they they failed those two mothers that I that I talked about earlier.

Communication Failures And HIPAA Fear

SPEAKER_01 13:28

But what it comes down to on a real basic, on a basic level, is this failure of communication that we have allowed to go on and that we keep perpetuating at the at the as I say at the very basic granular level. I think that is the real uh fragmentation that's happened in our system, and we've and we've allowed it, both as consumers, patients, providers, lawmakers. I mean, we've we've and I'm gonna beat up on HIPAA here for a second, and but it's but it's not because of HIPAA. HIPAA's a good law. HIPAA does what it's supposed to do if you follow what HIPAA says it it should do. But the fear of HIPAA, the misunderstanding of HIPAA has created a logjam where there was already a logjam. So we've got a logjam on top of a logjam that now precludes us in some people's minds from having communication, which is completely false. It's completely wrong, and we could do an episode on that too, about the misconceptions of HIPAA because I have a three-hour plus webinar that I do on just that. Uh but you know, listen, people are busy. Uh sometimes the system breaks down because there's busy people and they don't have the chance to, or just they they can't communicate everything that they should, or they forget. People forget sometimes too, and we have to be okay with that. Uh uh but it's uh the as I say, the misinterpretation of laws, and there's dumb laws, there's dumb policies out there. There's dumb I I know of one agency that I used to work with where the west wing of the of the agency would not communicate with the the east wing of the agency because they just had different supervisors and this was their policy. I mean and they're all working for the benefit of the same client population. One may see this one and you know, vice versa within weeks, but they just didn't communicate. They thought that they couldn't or that they shouldn't. And that's just that's just stupid. But I and and then the third thing I think we need to do is we need to remember, and and you brought this up without even you know categorizing it as such, but the the approach has to be client-centered, it has to be focused on your daughter's specific needs and not a cookie-cutter approach to well, when when a when a person has this ailment, here's what we do we give them this drug, or when they start freaking out, we give them this respire it all. So I think the client-centered and the environmental approach is is extremely important and it's and it's lost. And then the third thing, so we've got our communication, we've got our client-centered, and you see what I'm doing here, right, Victoria. The third and most important overarching thing here is that we have to have coordination in aftercare so that we are actually moving into a proactive mindset of how to keep people out of these acute moments of crisis and acute moments or need for hospitalization. And our Western medicine is not based on that at all. Our Western medicine is completely responsive. So I think that those three factors are very telling when you ask me a question like, why is the system broken, fragmented? And sure, there's people to blame, there's always somebody to blame. We could, that's easy. But I could also give you a lot of reasons why we shouldn't blame people. We should actually point the fingers right back at ourselves and what we've allowed to happen in the way that that I think uh it's perpetuated itself, it's been cumulative.

SPEAKER_00 17:17

Right. Absolutely. It has. And the thing is, is that you need to remember I treat people the way I want to be treated. And when we're in the hospital, like you you just we were there, and during the same one month oh, we were there. I mean, when when Faith was born, we spent six months and I never left once. We were six months in the hospital. When I got out of the ICU, I stayed by her side in a wheelchair for months, and my friends would do my laundry and bring stuff up. But back to this other time, she was three, and we were there for a month, and we were in there, and I walk by and I see there's no other parents in the rooms with the kids. And I understand during the day, but even at night, there was no hardly anybody in the rooms with these kids. And I understand the hypocrite and all that's going on, but I remember one night specifically, and I literally it broke my heart because I've seen my daughter code, and it's one of these things nobody should have to ever see. It's it's the scariest moment of your life. And this little girl, the cutest little girl, she coded. And I'm watching everybody run to the code. And I am in the room with my daughter, and I'm sitting there holding her, and I hear, you know, I hear the code blue, code blue, and I'm holding her because I remember that that had been us dozens and dozens and dozens of times. And the doctors were all running down the hall and running down the hall and running down the hall, and they're going in there. And I remember that we had just walked that hall maybe an hour ago, and she was diagonally across from us, and she was in there alone. And I kept thinking, what if she's passes and she's by herself? Then after the code had stopped, the doctors had walked by and I had seen the pulmonologist come by, and I was like, Hey, can you come in the room for a minute? And he looked like he had just lost his life. And I said, I don't care what you're doing. I want you to sit down for a second. And he normally was very cocky, and he was not our primary pulmonologist, but he rounded enough when we knew him. And I was like, Look, I don't know what happened. I know because of HIPAA, you can't tell me. I could walk by the room and see, but I just want to take a minute because that little girl was in there by herself and say thank you. Because I know that more times than not, you're not thanked for what you're doing. And on behalf of the family, the little girl, the parents, I want to thank you because I've been that parent. And he emotionally teared up and he was like, This is why so many of us have a God complex, is because we're not recognized for what we do. And that's why we become arrogant pricks. And I was like, wow, you know, oh my God. Like, that's such a huge moment. And I said, I know because of HIPAA, you can't tell me, but my heart breaks because that little girl was alone when it happened. And I said, I want to order something from the gift shop to her room. Can I do that? And I was like, that's the best way to get around HIPAA I can, because would it be delivered? And he was like, she would get it. And I was like, oh, thank God. And so, you know, I ordered a little stuffed animal for her to hold because she was in there by herself. And even as an adult going through that, it is so emotional. But then you have the doctors who, you know, want the big homes and the yachts and the golf club memberships and the, you know, whatever. And then in the process, yes, they absolutely, without question, started this with the absolute best intentions, but they get that complex and it just changes who they are. You know, I mean, so many people change as they get older, they change as things go on. It's a it's a choice, but you know, we're still people at the end of the day. And one day that could be them in that bed. One day it could be their their parent or their wife or their mistress, or, you know, I mean, it can be. And and that's their kids. And they're kids. And, you know, it is so scary. And and to go through it, just take a minute. I mean, when I go in advocating for families and I have them, and I one of the things I also want to touch on is the importance of a medical power of attorney, because our kids, and we both have kids of different ages, whether they're 8, 13, 19, 25, 30, they're still our kids. And if, you know, there are an adult age, we do need a medical power of attorney. We need to be in there advocating, you know, a living will where they offer those options. And those are things that we offer. But to have a child in there and you know, let's just say they're stable for a minute, go in there and and talk to the people who are, you know, thank the nurses. Every shift I thanked them. And they became more humble because they realize that they're appreciated. And then you go in there and you talk to your your child, your significant other, your parent, and remind them this is temporary because it's so scary. I mean, the machines, uh, I will. Put out a picture at one point. Our our daughter was on full organ failure. And they said, we'll just keep her comfortable and let her pass. And I was like, this is not even an option. This is not even an option. And I had our gastroenterologist come in and was like, that's not the mom you say this to, because this mom has no fear. And this mom will send you to the ER across the hall or across the street. And she had like she was on dialysis. She they had her whole stomach, she is scarred from her breastbone to her pelvic bone, and it's about three inches wide. She doesn't even have a belly button anymore because of scar. And they left her stomach open with a wound back for, and then they were doing surgeries bedside because she was too fragile to even make it down to the OR. And those are moments that are unbelievably scary. And it's like, well, we have to see what insurance will cover. I don't give a shit what insurance will cover at that moment. That's my child. It's not a piece of paper, it's not an approval process. And this is why so many people get frustrated with the system because you have to see. Can you go to the very best provider? Sure, if you have the very best insurance, but if they don't take the coverage, then you don't get to go to that provider unless you can pay out of pocket. Well, if you could pay out of pocket, you probably have that good insurance. And these are issues that people don't understand. They don't, you know, there's so much to it. I mean, you have one realm of it where you see it on the law side and you see it, you know, from the advocation side, and I see it from the advocation side, and I see it from the parent side and the survival side, you know.

SPEAKER_01 23:37

Yeah, micro versus macro for sure.

SPEAKER_00 23:40

Absolutely. And I think that's why we work so well together as a team, is because, you know, when you walk in that room, and even as a woman who has been there where I'm unrecognized because my face is distorted and broken, and I'm broken physically, and they come in there and they bring a man in, no offense, but they bring a man in to a room where a woman had just been stabbed repeatedly and her jaw's broken, her nose is broken, her shoulders dislocated, and they bring a man in and they're like, all right, get undressed. And you're like, I've already been accosted, I've already been assaulted. You know, how about you come in with a little different tone? How about you bring a woman in with you during the initial, you know, examination? These are all things that really it's just kind of common sense that needs to be brought to fruition in order to make things a little bit better.

SPEAKER_01 24:30

We actually in the mental health field were we went through this whole recovery awareness program. This is go this goes back a long way, where we were supposed to rediscover or or implement a recovery-oriented system of care. And what would that look like in the system and in your particular office? And to me, all the things that you just said are commonsensical, that just makes complete sense and should be a no-brainer. And the fact that you have to think about these things and write them down to me is just I don't know. I just I want to say stupid, but I guess it's not stupid because this isn't happening. And and and these, you know, and I I think that without knowing without ever calling it recovery-oriented, the the system that I designed is absolutely the definition of a recovery recovery-oriented program. What you're asking for is a recovery-oriented program as well. Because a lot of what you're describing, the back side of that, if it's not there, can cause further trauma, right? And I know you you wanted to talk about the impact that some of these treatments have in terms of traumatic events and and and rethinking and rekindling those those feelings.

SPEAKER_00 26:00

Right. It it is it it does re-traumatize. And it just depends on, you know, some sometimes the doctors will come in the room and they'll just start talking. And my like my daughter's in the room, and they're talking about things, and they don't take into consideration that there's a child sitting there watching their mom. And, you know, I go in there and I'm like, hey, let's talk about this, you know, let's kind of just dumb it down a little bit. And it's like, oh, no big deal, whatever. And it's just a simple thing. Like, I actually was known for retraining the doctors. Like, I would go in for surgery and I would never do versette. I would never do any of those things prior to going to the OR. And I've never taken any pain medication, but I would always make them say to Faith, mom's gonna be okay. Mom's gonna be okay, you know, and reassure her because I'm going back there. She is waiting and she's a little girl, and she's like, What's going on with my mom? My mom's going back to the OR again, you know. And and the thing is, is it's just common courtesy because it is traumatizing. That's why, and this is something most people don't think about. When you go into the OR, people don't realize, and my daughter does because she's had 54 surgeries, but when you go on the vent, the ventilator is life support. They take away your actual ability to breathe on your own. The machine is breathing for you. And they actually give you versette and they give you propofol and fentanyl and all of these things controlled, but they give these to you so that you do not remember these things. That's why they try to give you versette in the pre-op room before they take you back to the OR so that you don't recall some of the things that happen when you go under anesthesia. And it's traumatizing. And when you come back out, you get a fear of the what if, the what's going on, the how could things be different? You know, they don't want you to go in there. And the reason they do this is because, like, perfect example is I'm a recent amputee and I lost my arm, half my arm in my hand. And I don't do for set, like I said. So I get wheeled into the OR, and this is going to be triggering. So I put a triggering effect out there for everybody, and I'm wheeled back there. The one great thing, and I silver lining to everything I always try to find. I love it ice cold, and the OR is freezing.

SPEAKER_01 28:10

And I love those warm blankets they put on you.

SPEAKER_00 28:12

Yes, and they put this little donut under your head. I get wheeled in and I look around and I'm seeing saws and this like contraption device. And I'm like, what is that for? Like I see in my husband's tool room, and they're like, that's to hold your arm in so it doesn't fall off.

SPEAKER_01 28:27

And I'm like, Oh, great, thanks. Oh boy, thank you.

SPEAKER_00 28:31

Yeah, and you see all the saws, and you see all of the like, they're like, that's what we're gonna use to cut your arm off, and this and that, and this is this. And I'm like, now I understand why people want to like be put under before they come back because they don't remember these.

SPEAKER_01 28:44

You know, I don't know that I've ever I assumed that when I had my prostatectomy, I think that's how you say it, back in 2020. I think I must no, I no, I don't think I've ever had that because you know, the surgeries that I've had, like the prostatectomy and things with my ears, and you know, whatever, it doesn't matter. But I I I distinctly remember having those conversations. Like I remember seeing that giant robot in the corner that looked like something out of the Star Wars bar room, you know, that was gonna do this operation and joking about it and joking with the anesthesiologist about how I'm gonna fight the anesthesia. And she goes, Oh, I'm gonna win. I said, No, you're not. And next thing I'm gonna pull next thing I know, I'm waking up in the redheads take twice as much anesthesia.

SPEAKER_00 29:32

It is redheads take twice as much anesthesia. That is true.

SPEAKER_01 29:36

That's a fact.

SPEAKER_00 29:37

That is a fact. That is a fact.

SPEAKER_01 29:38

What do you think about the fact that redheads are going out of going out of business?

SPEAKER_00 29:43

There's like it's only one percent of us that are true redheads. You've seen my daughter, she's just like me, right?

SPEAKER_01 29:49

But genetically, I guess it's being weaned out of our system. They're gonna in another 30 years, there won't be any real redheadsheads anymore, not unless it's bought.

SPEAKER_00 29:59

I know. We're a dying.

SPEAKER_01 30:00

I mean, I don't I have a redhead and I don't even have hair.

SPEAKER_00 30:06

Well, your daughter said you do. Your daughter said you have a little fuzzy.

SPEAKER_01 30:11

Yeah, yeah. I got like that Homer Simpson peach fuzz. One thing I one thing I would say about there is also fear of the systems, and and one one I mean, we could talk about you know how people get caught up in a cycle, you get branded as this guy's nuts, you know, when he comes in, uh, you know, and and that happens, especially with people with with severe mental illnesses that that really can be a pain to deal with. There's this, I'm not gonna sugarcoat it, and there's other people that are abrasive. And you know, my my one of my patented lines is you know, no matter what medication you have, no matter what illness you have, you can't fix asshole. An asshole is an asshole, is an asshole. You're gonna be an asshole whether you're really sick or if you're really well, you know, an asshole is an asshole. But I I think about a couple of things, how people don't want to get branded a certain way by by going to the hospital and needing a certain treatment. I also think about how parents sometimes don't want their kids branded a certain way, and the trauma that they think will be a I perfect example. I have a friend who her ex-husband refuses to have their son who is highly in need of special specialized needs or at least a heavy-duty 504 plan in school, and he refuses to have the kid diagnosed and evaluated. And I can't get it through his head that that's the dumbest stance you could possibly take. It's not about branding, it's not about stigma, it's about eligibility for services.

SPEAKER_00 31:44

So that's also a form of abuse to your kid because you're not taking care of your child. And the thing is, is I'm a mandated reporter. And the thing is they don't want this, the the title of oh, my child's special needs.

SPEAKER_01 31:57

No, I I know. And it's just I listen, that's just that's just the maybe the that maybe it's an example that doesn't fit here, but it's an example. Another example from my early, early days in practicing law, I did a lot of work where families were were involved with the the Department of Children and Families, where you know, abuse and neglect cases. Yeah, and when you get working in the inner cities, uh in neglect and abuse cases, people will not go to DCF for help. If they're having struggles with their family and they, you know, they have a kid who's out of control behavior, if they have a kid who is uh a truant, they will not call DCF because once that program, once that system is in your life, it's a virus you can never get rid of. And there's a stigma, it's not even a stigma, there is a badge attached to that that you are in that system. So we have all of these different factors that really play into why people don't seek care. I we were talking just recently, you and I were oh, yeah, we were talking with JJ about the VA and young veterans who don't want to go to the VA hospitals because, and I've been there many, many, many, many times. You walk down the hallway and it's lined with older guys in wheelchairs who look like they're in real bad shape, and you know, you don't want to get associated with that. And the message that I would give everybody is if you were eligible for VA services, get them. It's gonna take you a long time, it's a pain in the neck, but get them, it's worth it. It's a great system once you get in the door, anyway. That's that soapbox. But I think a lot of this leads to why uh people stop asking for help. I think that's where this disengagement comes in, and the disengagement leads to higher acuity of uh illnesses later on, right? I mean, if you're not engaged and people aren't engaging with you, but so that leads me right into this idea of proactive versus reactive, which we meant, which I mentioned earlier.

Proactive Follow-Up Before Crisis

SPEAKER_01 34:03

I think that that one of the flaws in our system is seriously the idea of reaching out to somebody and asking how they're doing before the shit hits the fan. Sorry for my language, but uh we are we we re-engage with people uh too late. There's a lack of follow-up. If you go out, you get discharged from the hospital. Here's where you should go, here's where you should come back, and and that's your that's your walking paper, literally. You walk out with your walking paper, but there's nobody now. You are getting the phone call saying, Hey Michael, this is so-and-so from such and such, just wanted to be sure how you're feeling today, and any problems or complications. And it's a it may as well be a robotic phone call, but honestly, but you know, at least it's something, at least they're reaching out. You know, I don't want to speak out of turn for him, but my brother just had a procedure and he wound up having to go back to the emergency room within a few days of it. And thankfully, you know, he was okay, but you know, that's not in your that's not in your walking papers, right? So, again, the lack of engagement, it's almost a a we're gonna we're not going to engage because we're going to respect your privacy, your your choice not to follow through, your choice not to let us in the house because you're manifesting a mental illness. And if you scream and yell at us, well, we're gonna say that's okay, we don't have to, you know, and and that's some of the flaws, I think. I'm giving I'm all over the place, I know, but it there's a lot of things that go into why people stop asking for help and what happens when they stop asking for help. And in the example I was just giving, we had a gentleman who was living in an in-law apartment in his parents' house. His parents were away. They go to Florida every year, and he had not been seen by his care providers. He had severe and persistent mental illness, and he had not shown up for his appointments. So his worker reached out to him, went to his house. He, in no uncertain terms, told him that he was not pleased that they were there, right? So there was swearing, there was yelling, screaming, carrying on, you know, get the F off my property, so they tried this a couple of times, and then they then they chose to take the route of, well, this gentleman is obviously choosing because we're a recovery-oriented system of care, he's choosing not to have us come out there. So we're gonna honor his wish, and we're not going to try to engage him. And I'm like, what do you know? Right. You're he's not he's not right. He doesn't want your help because he's manifesting he's an acute florid psychosis right now. He's not making the choice, quote unquote, to say he doesn't want your help. He needs your freaking help, whether he wants it or not. This is an emergent situation. And you know, it didn't end, I mean, it ended well, he lived, but uh three weeks later or whatever, we finally convinced the police to get out there and do a wellness check, and he was in a coma on the floor because he wasn't eating or drinking. So, you know, it I don't know where that fine line is drawn, but uh at some point we have to step in as a society and as friends and and and caregivers and say best interest has to weigh out sometimes.

SPEAKER_00 37:32

Right.

SPEAKER_01 37:33

I so I don't know, that's my two cents. I mean, I I I mean that's why I think that people don't reach out. I mean, have you had that experience as well? And and have you been reluctant to reach out?

Access Delays And Pain Management

SPEAKER_00 37:46

A million different times, not only as a parent but as an advocate. And what what concerns me greatly, and you know, everybody knows that I'm from Atlanta, and there's Children's Miracle Network, which you know, Jerry Lewis used to do, and Faith was a runner-up for it a few years ago. And it takes four million dollars to run children's health care a day. Four million dollars a day to run that. That's more money than we'll see in our life, right? They just built the author blank, and anybody listening needs to go look at this up because I have like seen kids. We we were going across the street to go to the medical facility, and across the street, it says, like from the hospital, it's brand new, it says author blank children's hospital. This thing is the biggest thing I've ever seen in my life, right? A little kid was in the parking lot when we were getting out of the car, and I don't know, I I can't speculate because kids look so different this day when we were younger, like their age, you have no idea what the age they are. This little kid cracked me up, and here I am trying to hold my my smile back. This kid's like, there is no effing way I'm going in that place. Are you nuts? Like to to mom. The building shares a parking lot, and no freaking way. And I mean, I'm like, that building intimidates me and I'm an adult. I mean, it's huge, and it's like a little tiny kid looking up and just looking and looking and looking up, and this thing is massive and it's overwhelming to a kid. And when you go in there and you know, the doctors don't have the time because they have so many patients. You know, I tell people when I advocate for them all the time, if you see them in the hall, say hi to them. Let them let the kids see them outside of what they're doing. Like let them see them outside of you know being a patient. If they see them in the hall, say hi. When you have an appointment, I am quick to go in because they'll say, oh, follow up in six weeks. Well, if you need them before six weeks, guess what? They don't have any appointments available. If you have to see a specialist, it takes six months to a year to get into pain management. I could do a series on pain management. You can't get in for six months to a year to a pain management doctor.

SPEAKER_01 39:52

Well, I'll get we we can go, we can go off on pain management because I think that is a it's it's one of the, if not the fastest growing segments of the medical profession, but it's alarming to me that it's such a need, and you can't get in to see these folks, and it is such a fast growing because what does that tell you about what we're doing when people are in pain?

SPEAKER_00 40:14

Right. And now IV, where they put it into you and it disperses opioids intravenously, and you can wear it like a pump. And it's like, are pills not enough? And now they have film, a film that goes in your mouth and dissolves that reacts faster than an opioid. And you you're like, are you kidding? I don't care what doctor it is. When we walk in, and I tell people to do this all the time, I I don't care. We've waited six months or six weeks or six hours. I don't care. Go in the room, and every time I, and you know this because you know how I am. Whenever I go in the room, I'm like, hey, how are you? Nice to see you. How's your family? How are your kids? Because that's gonna bring them down to a human level. And I do it because I'm actually concerned, but it's like, how are you? You know, and I'm like, oh, let me show you the book Faith just wrote, or you know, Faith is at it again, she just got another, you know, whatever. And it makes them realize, okay, let me put the chart down for a minute. Let me see that that's a person, not a case. Let me talk to them for a minute outside of anything medical. You know, and even if it's just for the sanity of the child, do it because they come in and they're like robotic in a sense. They come in and they're like, okay, why are you here? Well, you told us when you made the appointment six months ago that X, Y, and Z was going on. Is it still going on after six months? Maybe it's something else and you need to go see whatever. And it's like, I couldn't get in to see you any sooner. And then it causes, it re-traumatizes. It re traumatizes not just the patient, but the family, because they're seeing their loved one hurt and in pain. And there's nothing that we can do to help that. And you can go to the emergency room, and you and I have talked about this, and people like my arm hurts, my whatever hurts, and people go in time after time, like the gentleman you told about who went in so many times. I think you said like 17 times in a 30-day period.

SPEAKER_01 42:07

Yes, exactly.

SPEAKER_00 42:08

And they won't bring down social work, they won't bring down psychology or psychiatry who are on call and at the hospital anyway.

SPEAKER_01 42:16

Yeah, I it's mind-boggling, I know. And and I think that that all goes to the the things that the little lessons, and I man, that's really what it comes, all this comes back

Client-Centered Care And Shared Resources

SPEAKER_01 42:28

to, right? It's the little things, the little lessons that we can we can rethink, right? We can rethink the way that we're providing care on uh in any system. It's not just the medical system that you get caught up in or the mental health system I'm caught up in, but all these systems, if we just rethink the way that we're approaching uh, I mean we have a job because people need us, right? Right. So let's be a little bit respectful and thankful in a weird way to the people who are keeping us employed, right? I think as I said before, we need to get back to being client-centered. Let's let's let's go back to the very basics of uh what the system actually needs. It needs to be client-centered again, it needs the bedside manner. It need I need to know that you are committed to my care. I need to know that you are going to be there and consistently available to me in my care. And that's very difficult when we have the model that we use in in Western medicine, which is this response mechanism all the time. So so people get busy. People get busy, and our are unfortunately our big corporations are running our, you know, they're they're running what goes on, and they're telling us how we will receive care or how we will not receive care, which has to has to change. As I said earlier, we've got to get back to better communication, which means that I want everybody. That's working on my team to collaborate with each other. I want you collaborating with my family. I want you collaborating with other specialists. And by the way, as a specialist, I don't want you holding back the good stuff. I see this a lot in as a again on a macro level where one system is really I'll give you a great example. The Department of Corrections has in typically every state has a humongous budget. Their budget is blows away anything that you'll see like in the Department of Social Services or Department of Mental Health or Department of Children and Families. But they don't want to share some of their resources within that budget, because like everything else, if they start showing that they can they can afford to give it away, then it's very easy for the next year's budget to say, hey, you gave that away, therefore you don't need it anymore, therefore we're going to take it away from you permanently. It's just a BS way to look at things. And we absolutely this is the reality of politics. This is the reality of budgeting and what we do to these agencies. So what happens is it trickles down and impacts us. So now my client who is ready to come out of jail, out of prison, right, but he needs some services. I can't tap into Department of Correction services to get that client needs in the in the community. We have to go with whatever the Department of Mental Health is is offering. And that collaboration, that comprehensive application of resources is not being seen to the level that it could or should be. And the final thing is the coordination we talked about, the follow-up, the the making sure that everybody on that team that I described is talking the same language. They're all pulling the oars in the same direction so that that boat is going to run downhill instead of uphill or in circles for that matter.

SPEAKER_00 45:54

Right. Absolutely.

An Eight-Year-Old In Crisis

SPEAKER_00 45:56

You know, one of the things also about advocation is it's horrible. I was called out for a domestic, and it was the man who was the victim. I hate that. And they had six kids. And I was there when law enforcement and mental health crisis arrived. And I was there. It was like a six-hour standoff. Anyway, so mom gets 10-13, which is like going into a mental hold. And I ended up talking with defects and all of them. And we ended up deciding that all of the biological fathers were going to come pick up their kids. There were six kids under the age of eight. And they, the biological fathers, were going to come and pick up the kids. So they did. And then I started doing play therapy with one of the children. And one of the girls came over to see her siblings. And it was probably one of the hardest days for me because this girl, she was eight and or she's nine now, came in and I noticed she was very different. Her behavior was very, very different. So I asked the dad, can I talk to her for a second? And yes. So she came up and she was very standoffish. And I was like, look, you know you can talk to me. You know you can tell me what's going on. And she's like, nope. And she just wouldn't look me in the face. She wouldn't talk to me. And so many times people just give up and say, okay, bye. And give up and walk away, Mike. And they don't, you know, they're not persistent. So I was like, well, can I just sit with you for a minute? You know, I'm sure everything is so crazy busy right now. Can we just sit for a minute and just talk? Or just sit and hang out? And she was like, I have to. And she just sat there and got quieter and quieter. And I let her have that peace and quiet because she probably desperately needed it. Well, after probably 10 long minutes, she looks at me and she's like, I I like your nail color. And I was like, Oh, thanks. And I said, Maybe next time you come over, you know, I can bring it and you can paint your nails. And she's like, I won't be coming back. And I was like, What do you mean? And she goes, I came here because my dad thought I was picking up some of my belongings and taking them back over because we had to leave so quickly. And I was like, Oh, okay. I said, Do you want me to help you get them? And she goes, No, I'm not taking any of it. And I said, Well, I I don't understand. And she goes, I'm sorry, it's so hard when it's about a kid. And she said, I told that to my dad because I wanted to come tell my seed my siblings goodbye. And I said, What are you talking about? And she goes, When I leave, I plan on opening the door of the minivan on the interstate. And I'm gonna jump out into oncoming traffic and I'm gonna commit suicide. And I was like, I said, wait, what? And she Mike, she had the whole thing planned out, like the entire thing planned out.

SPEAKER_01 48:35

She was nine, eight, nine years old.

SPEAKER_00 48:37

She was eight at the time. And she said, you know, I planned to come say goodbye to my siblings. And I had planned, she was with her dad and her mother or her stepmom and grandmother. And I said, Okay, you don't have to do that. And she goes, I can't stand this anymore. I watched my mom beat up on my stepdad, who is so good to me. I don't like my biological dad. I don't want to be there, and that's where I have to be. And I was like, why don't you want to be there? And she started clamming down. So now I know there's trauma there. So I said, Would you do me a favor? I said, I have to go to the restroom, but I want to keep talking with you. Can you walk with me? Because I don't know where everything is here. And you used to live here, right? And so she walks with me. And immediately I said to one of her siblings, I said, Can you stand there with her and do not move? Do not move. And I went to the dad and I said, I need your permission because I need you to call the police right now. And I'm taking cut, I'm taking emergency custody of her because this is what I do. And I said, I need you to call the police and I need you to trust me. And I had to 1013 this eight-year-old little girl. And I've never in my life done that ever.

SPEAKER_01 49:44

For suicidal allegation.

SPEAKER_00 49:46

For suicidal allegation. And I got down on my knees at her level. And I said to her, I need you to trust me. Will you trust me? Please. And I said, I am here. And I said, You're a beautiful girl and you have so much to offer. I don't want you to do this. And so at first she was very resistant. No, I'm not doing it. I'm not doing it. And I said, What if I got an ambulance to come and take you to talk to somebody? And she said, I'll do it if you go with me. And I wasn't going to tell her she was going no matter what. And so I told the parents to decide. And I said, Have you even talked to her, the dad and the stepmom? And they're like, no, we just let her stay in her room. We just keep her in her room. And she's watched her biological mom beat her stepdad, the only good person she trusted. All of her siblings are no longer there. She's scared. She's been like taken out of her home and where she's used to being. And so the ambulance came. I got permission to go with. We went to the hospital. They put her in those paper pajamas, put her in the room, humiliated her, you know. They were going to sedate her. And I'm like, look, it's now like 11 o'clock at night. And I'm like, I'm sitting in here with her. I am her advocate. And I was like, can we have crayons? Well, she can't have pens. I know she can't have pens. Can she have crayons in a piece of paper? And so we just started drawing. And she drew beautifully. And I'm like, oh my God, I can't draw a stick person. How do you do this? And she would just open up and they start drawing their feelings and they don't realize what they're doing. And I told her and she said, Thank you. And I said, Were you really gonna like leave me hanging and not show me how to draw this picture? And so she, I never mentioned it again. And she goes, How come you're not asking me what I wanted to do? And I said, Everybody else is asking you. Why do I need to? If you want to talk to me, talk to me. I'm here to learn how to draw. And you build that trust. You build that trust. And she told me more than she told anybody else because people were coming in and they were like, Were you really gonna jump out of a ban? I mean, how do you talk to an eight-year-old that way? And she's like, Yes, leave me alone. And she was only calm. They're like, She's only calm with you. Why? Because I'm not in there interrogating her, I'm not in there making things worse. It's all about how you talk to these people. It's how you talk to these kids, it's how you treat these kids. And I still talk to her. And, you know, she hasn't been able to see her mom. The courts, I went to court, I testified on her behalf, and her mom lost custody. And she did have a restraining order against her for a year and then lost custody in the divorce. And the biological dad had now has her. But it's the fact that these kids don't feel like they have anybody fighting in their corner when it comes to mental health either. And the parents look at them like they're burdens. Like the dad said, I just put her in a room and leave her alone because she's acting like a brat. She's not acting like a brat. She needs help. And instead, when you have a bad day, are you being an ass? You're having a bad day. She is traumatized. And instead of listening and being there, you just want to just poo-poo her off and shut the door and not deal with it. And it's because everybody else, when they do open that door metaphorically, and try to talk to her, it's why did you want to jump out of a car in traffic? And it that's not how you talk to people. And that's why I love who you are.

Award Recognition For Care Coalition

SPEAKER_00 52:49

I love what you do. I love how you do what you do and what you've arranged. And I'm gonna just put the cat out of the bag. You just got an award. And I'm I'm gonna call you out and embarrass you, and I don't care, you can get upset with me. But you need to tell everybody, and it's because of what you've created, it is because of who you are. It's the authenticity to which you have that most people don't anymore. And so I want to congratulate you on it. And now I'm just gonna shut up and let you tell what the award was that you so rightfully deserved.

SPEAKER_01 53:20

Well, thank you very much for that. Yeah, I found out about 10 minutes before we started recording this episode for everybody that the care coalition that I formed years ago and now Victoria has graciously become a partner in. We just won uh an award for 2026 from Insider Weekly, actually. The best mental health systems reform model for crisis response and family support for 2026.

SPEAKER_00 53:53

That's a mouthful.

SPEAKER_01 53:54

That's a mouthful. It's the best mental health systems reform model for crisis response and family support for 2026, as per Insider Weekly. And I just found that out this morning, so I haven't even had time to read the full article and engage and really process it all. But it's it's a big deal for me, for my team, and it's a big deal for everybody out there who is going through what our clients go through, what patients go through, what you went through on a personal level, what you go through both yourself and with your daughter. We see a need. Uh and we're both coming at this from the same place. We see the need. We're shouting it from the hilltops, from what hilltops meaning podcasts, I guess, right? Uh you took action, you built an empire, and that's why I'm thrilled that you're here with me. I'm thrilled that this award is is coming to me and to us at this particular time because uh it just reinforces what I know to be true, and I think what you believe to be true, is that there's there's there's importance here, there's value here to what we want to try to become. We are we are coming and it's being recognized. Insider, I mean, if insider weekly is recognizing us already, and there's other articles that are out there.

SPEAKER_00 55:16

Yeah, there's a tiny one I heard. Like what it's not a well-known. What is it? Oh, it's like USA Today or something is doing an article.

SPEAKER_01 55:23

Well, yeah, but I was that I was gonna talk about the one that's already out in Women's Weekly.

SPEAKER_00 55:27

Women's Weekly, too.

SPEAKER_01 55:29

Yeah, so there's yeah, USA Today is doing a piece, and Women's Week Weekly has a piece out already. So we this movement is getting some real, real traction. So I'm very grateful. I'm humbled, but I know at the same time, I'm humbled, but I'm also sort of like, yeah, I told you it's about time you guys started listening to me.

SPEAKER_00 55:51

And you know what? Insider Weekly, I I've been awarded Lifetime Humanitarian Advocate more than once from Life Side Insider Weekly, and they are a big deal. It is a very thorough process that they go through for nomination and for awarding. I mean, you the organization care coalition got it for the entire year. That is massive and so well deserved because a lot of people hear you, they saw on the live, you know, they're growing. I mean, when we we just did a whole new group on Facebook called the Mental Health Crisis Resource Network Care Coalition, when we did it because there was some you like you called it bots and what did you call it?

SPEAKER_01 56:36

Bots of spiders where it's bots of spiders and viruses crawling all over the place. Yes.

SPEAKER_00 56:41

And we we opened it and within, I think 24, 48 hours, it had like 40 people. Within another 24, it had 80 people. We did a live on Friday, and by yesterday it had over 700 people. And that is authenticity, that is organic, that is real. That is because what you have built is is real and it's necessary, it's needed, and people are trusting you. I've given you the metaphor before, like, nobody knows of this great restaurant unless people hear about it. And now everybody's hearing about it, and they're like, damn, I wish I knew about this before. This is exactly what I need, and that's why. And I hope you realize that this award is so well deserved, and you should be like cloud nine because you deserve it.

SPEAKER_01 57:27

I am on cloud nine, and I really appreciate that, and I appreciate them. You know, it's it's it's humbling. And I'm on, I'm believe it or not, I'm actually a humble guy. Yeah, it's true. I I don't I don't take accolades, I want them, but I don't take them well when I if I get them.

SPEAKER_00 57:45

So what if I

How To Reach Us

SPEAKER_00 57:47

told you that our first episode of what it takes hit over 300,000?

SPEAKER_01 57:51

300,000? And that wasn't, you know, that was just us having a conversation. This episode is much more important for people. So if we got 300,000 people listening to us talk about what we need to talk about, I really hope that this hits home, guys, because a lot of you are out there, you're feeling lost, and you're really, you know, trying to get the help that you and your family so desperately need. You are not alone, you're not the only one going through it. You're also not the only one that that's out there, you know, crying for help, and there's others that you can share with, and people can share with you. More importantly, feeling that you're alone is probably the most universal feeling that people talk to me about. I'm sure to you as well, Victoria. But more you are not alone, you're you're not wrong for feeling that way.

SPEAKER_00 58:45

Right. And what a powerhouse duo, because we cover all the basis from the legality of it to, you know, everything that you have done on that side to advocation and being a caregiver myself and special needs myself. You know, we have all the pieces together to make the puzzle that forms what everybody needs. And that is what has been desperately needed. And there's nothing like this out there. Nothing. You know, there's fluff all day long. I'm not trying to derate or belittle other podcasters by any means. But I've listened to podcasters and I'm like, oh my God, this is so boring. I can't. It's so monotone, it's so dry. It's like the cure for insomnia. And I'm not naming names because some of them are crap, some of them are good. But like you listen to them and you're like, I can't, I can't do this. Like, I just can't. And it's because they're just so blah all across it. There's there's no life in it, there is no truth in it when it comes to like firsthand experience, whether it's on the legal side or the advocation side or the survivor side. And we have all of those pieces together. And having a conversation is one of the things for all the interviews I've done and all the interviews I've been on. People, when they say to me, I want you to be an interview, I want you to come on my show. And I'm like, if you're doing it in the form of an interview, I'm not coming because I don't do that. That's not who I am. I want to have a conversation. I don't want to sit there and answer questions because anybody could do that. Just give me a questionnaire and I'll send it in and just post it, right? Because I'm a person, you're a person, your listeners are people, and treat them as such. Let them listen to the conversation where I've had people write to me and say, I am listening to you going, hell yes, that's exactly what I needed. I needed to hear just that. Thank you. And that's what people need, and that's what you're delivering.

SPEAKER_01 1:00:32

Well, that's what we're delivering.

SPEAKER_00 1:00:33

And well, I'm humble and I don't take credit.

SPEAKER_01 1:00:37

And it's it's what it comes down to is authenticity. There is no dog and pony show. There is no BS. This it's authenticity. You know, we tell you stories that are true stories, and we tell you things that we've seen or been through that are true stories, and and that folks is where you build your trust. That's where we can help you to see a better way to getting what you and your family need and deserve. So we will keep doing it because, like we say here, this is what it takes.

SPEAKER_00 1:01:08

This is what it takes. And I'm so glad everybody is listening. And if you have questions, absolutely, you can send them to us. You can send them to infocarecoalition.org. You can, you know, send stuff to me at victoria at carecoalition.org. You can send stuff to Mike at carecoalition.org. And we actually respond. You know, I I get people all the time that are shocked that they write and I actually answer them. And it's like, wow, I didn't think I'd hear from you. But that's the whole premise of what we do is so that you can. And one thing that I I cherish about my partnership with Mike is from the inception, I said to him, I'm gonna piss you off, but you'll know I'm being truthful from the go. And and I said, But that's how you have respect for each other. And you know, not everybody's gonna agree on everything all the time, but Mike and I have this alignment where we have that respect for each other at the end of the day, and we see so much of the same eye to eye on things. And when you have care concern, care coalition, and you come to us with a question or concern, you're gonna get an answer. And you can come back and listen to this. And we have newsletters going out. And if you want to get onto the newsletter, go to you know, care coalition and sign up for the newsletter that comes out weekly. We have blogs that are starting, we have you know, these resources. We we're starting with downloadable worksheets for you. I mean, we're trying to cover every basis so that you know we are here with you. Keep us on your phone, keep us in your favorites. It takes two seconds to share this. Share this with someone who needs it. It could save their life, and that is why we do what we do.

SPEAKER_01 1:02:42

I'm speechless, I couldn't have said it better.

SPEAKER_00 1:02:44

So I love that that's recorded that you're speechless. Thank you guys for listening, and we will be back next week.