Schizophrenia: Three Moms in the Trenches
Schizophrenia in the Family. How do we cope? How can we help? We each have adult sons with schizophrenia and have written acclaimed books about it. We say it like it is, to help families, practitioners and those with SMI (serious mental illness) feel less alone...and learn. Randye Kaye, Mindy Greiling, Miriam Feldman...and guests.
Schizophrenia: Three Moms in the Trenches
Tools of Hope: Family Empowerment and Care Coordination in Mental Illness (Ep. 21)
Use Left/Right to seek, Home/End to jump to start or end. Hold shift to jump forward or backward.
Send a Text to the Moms - please include your contact info if you want a response. thanks!
Today is about solutions -( we’ve done a lot of episodes about problems) - and at the end we’ll share some free resources to help you if someone in your family has schizophrenia -
Guest: Michael Mackniak, JD
Free resources:
https://myfenow.com/3moms/
https://myfenow.com/tools-of-hope/
Other Links:
https://www.facebook.com/groups/FamilyEmpowermentNOW/
Michael Mackniak specializes in coaching families and fiduciaries, to help them with the ability to get the comprehensive services for their loved ones, friends or clients.
He wrote "Saving Melissa: The Seven 7C's for Curing the Mental Health System" . It has insight and strategies into the process of creating an interrelated service system in their community.
He also leads Guardian Ad Litem Services, better known as Melissa’s Project, which is a copyrighted program based on Care Coordination.
We Talk About:
What are the 7 c’s, and the obstacles you face when trying to implement them ?
(Core Concepts you have found to be most successful in providing effective and efficient services in mental health treatment?)
- Client Centered,
- Communicative,
- Collaborative,
- Consistent,
- Comprehensive,
- Committed,
- Coordinated
What are some of the common issues that you face when implementing your program
People don’t want to be leaders
HIPAA myths and misconceptions
Reluctance to change (systemically)
Institutional memory
“Who do you think you are?”
Why is Family Empowerment so important? Are there Core concepts there, too? And challenges?
Getting Tools of Hope - and More Resources
QUOTES:
“I really hate seeing broken systems...and there is nothing more inefficient than our mental health systems.” - Michael
“I firmly believe the systems cannot change and will not work without the assistance of the families. Without family help the rate of success is vastly diminished.” - Michael
“The mental illness that you’re going through cannot define your family, and it cannot define you and who you are as a person.” - Michael
Who Are the 3 Moms?
Randye Kaye -Broadcaster, Actress, Voice Talent, Speaker, and Author (“Ben Behind his Voices”)
Miriam Feldman – Artist, Mom, Author “He Came in With It”
Mindy Greiling – member of the Minnesota House of Representatives for twenty years. Activist, Legislator, Author (“Fix What You Can</
Please share and support the podcast so we can reach more people who need the info and support.
Want to know more?
Join our facebook page
Our websites:
Randye Kaye
Mindy Greiling
Miriam (Mimi) Feldman
Welcome to our podcast, Schizophrenia. Three moms in the trenches. From the place where schizophrenia and real life collide. East Coast, West Coast, Middle America. With Miriam Feltman, Mindy Gryling, and Randy Kay. Welcome to episode 21. Tonight's episode is about solutions. And our guest has so many of them. The topic is the value and the need for family empowerment now. If you have someone with schizophrenia in your family, you know how we struggle with any empowerment for the family. And our guest tonight is Michael McNiat, who I have had the pleasure to know in person. This is about solutions. Let me tell you a little bit about Mike. And if you're watching on YouTube, Mike's right there. So Mike, you can wave, and I'm going to talk about you. He specializes in coaching families and also fiduciaries to help them get what we need, the comprehensive services for their loved ones, their friends or clients. Mike has a law degree and a master's degree in nonprofit management. He's a national certified guardian and a certified brain injury specialist. So if I weren't married, I think I'd want to marry him. His programs have received multiple awards and honors. And he wrote this book that I happen to have here, Saving Melissa: The Seven C is for Curing the Mental Health System. This came right off my bookshelf. It's got insight and strategies into the process of helping our loved ones. And Michael's going to tell us all about it. He's got an agency that has helped thousands of people and their families and their providers to get services in a comprehensive manner throughout Connecticut. We are from all over America, these three moms. So hopefully, what works for Connecticut, you can give us tips for ourselves as well. So welcome, Michael. I'm so glad to see you.
SPEAKER_00I'm glad to finally be here and finally meet you, ladies, all together and in live and in person. So uh thanks for having me. Thanks for what you guys do, and thanks for what you continue to do for not only your families, but for so many people across the world, frankly. That's wonderful.
SPEAKER_01I I hope so. The more shares, the more we can spread the word. So I thought we would just start. I know that you have listened to our podcast and you have a pretty good idea of some of the challenges our families have faced. But I would like each of us to share maybe two top issues that we have dealt with or are dealing with that has to do with what you do. So since I'm talking, I will say right now, what I'm dealing with is getting a fire under Social Security to recognize that my son, who as you know, I call Ben in the book, to recognize that Ben does have a disability, even though he was working full-time before COVID, but after COVID had a breakdown in so many ways, not just on employment, but five and a half months in the hospital. He's rebuilding his life again from scratch. I don't know if he'll ever be able to do what he did before because he's on a different medication. And we just need his disability payments, and they're taking forever to recognize his disability again. So that's one challenge. And the other one, running through our family experience has been getting practitioners to include family information in their assessment. And I'm the author of Ben Behind His Voices, and I'm Randy Kay. So, Mindy, why don't you go next and maybe you can finish catching your breath?
SPEAKER_02Okay, thank you, Randy, and welcome to Mike. And since you are both um from Connecticut and Mike has listened to the podcast where Randy says East Coast, West Coast, in the middle, I'm the one from Minnesota.
SPEAKER_01She's holding up the shirt if you're just listening on it and it's very good.
SPEAKER_02Yes, it's a sparkly Minnesota t-shirt. And um, I am not a lawyer, Mike, but I spent 20 years in the Minnesota legislature, and it seemed like um, even though we're a citizen legislature, many of the legislators are attorneys. And so I feel like I'm partly an attorney after working on laws there. Sometimes good and sometimes not so good. Um, but in my book that I wrote, and we're all mothers who have sons with schizophrenia who have all written books, and mine is um called Fix What You Can, Schizophrenia, and A Lawmaker's Fight for Her Son. So uh, Randy, you asked about things we're dealing with. And um, so I'm dealing with our son right now. He is trying to get a job. He works, you know, two to three hours a week at Nami, Minnesota, but we know that's not what we mean when we say a job for anybody, including someone with a serious mental illness. Um, and he did commit a crime when he was high and psychotic and being exploited by a person who is the one who got him into crack. That's a big part of the story in my book. But he um didn't get to go to mental health court. He ended up in district court where he was charged with a felony. And um, now he has that was knocked down to a gross misdemeanor, but that's impairing his ability to get a job. Thank goodness he already had housing with a rental voucher, or he wouldn't be able to get that either with a record like that. Um, but so I'm really going to be interested in what you talk about because what Jim has is two organizations that are supposed to be doing everything. One is a certified uh community mental behavioral health uh center. Those are federally funded pilots around the country, and Jim is in one of them here. They're supposed to be coordinating everything. And then he has a catty waiver, which in Minnesota is, I have to look because I can never remember, uh, community access for disability and inclusion. And there again, that's supposed to be coordinating everything. Um, but things don't always get coordinated. And when things fall through the cracks, we all know that a lot of people with mental illness end up in in court with a criminal charge, and that's what happened to our son. So our big thing is how to get a job when you've got a gross misdemeanor and you have a have schizophrenia.
SPEAKER_01Okay, and we're not expecting you to solve all these problems tonight, Michael. This was you know just a way for you to get to know us. So if we can uh just name name the issues because there are a lot of families out there who are going, they have housing for their sons, that's amazing. They still know their sons, that's amazing. So we recognize that in the continuum of trauma, you know, we may be there may be people who are feeling like we got it pretty good. So we want to talk to all the people in all kinds of needs, but these are the things we are dealing with right now, Mimi. Well, it's interesting.
SPEAKER_03It's interesting you should say that because um I was sitting here listening and I was thinking, you know, things are pretty good right now with my son. Um, I don't really have a huge, like the the main thing that I'm grappling with right now is finding him things to do. You know, he just sits alone in his apartment all day. There's no social support, there's no clubhouse, there's no anything. But then I'm thinking that's kind of a lucky person's problem. I would throw it back to, you know, earlier in the beginning years, where I think one of the main things that we all have come up against is trying to get help for our kids when they haven't broken a law or committed a crime or threatened anybody yet. You know, the old loophole of uh come back after we killed somebody. So that's a big one that we all go through. And then also, I just think the issue of families being closed out and not being allowed to be involved in the treatment is an ongoing problem for everybody.
SPEAKER_01Okay, thank you. And if you're on YouTube, I'm holding up. Oh, and I have to tell you, the paperback came out.
SPEAKER_03This is the paper. Well, yours is the advanced reader copy. Now buyers can get the paperback. It just came out last week.
SPEAKER_01Okay, and if you're listening on the podcast, it's called He Came In With It. And uh Mindy said her title, and mine is Ben Behind His Voices. Okay, Mike. So that's a bit about us. Uh you may have known all that, but I'm gonna start with some questions. And I don't even know this about you, even though we have had coffee and we've met. And how did you get involved with mental health treatment and advocacy to begin with? Like, what's a bit about your story before we get to your seven C's?
SPEAKER_00Well, uh, let me just first say that I think what's really important about your your podcast and what everybody out there listening can really take from the initial five, 10 minutes intro that you guys do in all of your podcasts, like you just did, is that you're experiencing real life issues, right? These are real life problems that three moms are going through, times that exponentially by a thousand, ten thousand, there's ten thousand other people that are having these exact same real life issues. And one of the things that I do strive to do in the work that I'm doing is to say, hey, we got to stop the esoteric pie in the sky BS. We really need to get down to real life solutions to these real life problems. Let's just not talk about you know the fanciful stuff. We really want to get answers or or solutions to how do I get SSDI fire lit under them? How do I get somebody to listen to me and break down this HIPAA myth?
SPEAKER_01Um, anyway, that's just Amen is all I can say to that. Amen. Amen. Amen.
SPEAKER_00And before I forget, one thing I did want to thank you all for was your episode where you interviewed your daughters, because I think the siblings of folks with mental illness, and obviously, particularly, are often forgotten and they also undergo their own series of trauma that may not be recognized. And I think it's really important that we take time to to analyze that or recognize that. Thank you. Um, my story is, you know, I got I got out of law school in 1994, took the bar, took took a trip across Europe, came back and said, now what, you know, bartend. Um, and then I I hung a shingle. Um, just you know, I'm not one to really follow the the rules typically and and have a you know, the the I don't follow the the the manual of life, I suppose. I just started practicing law, and one of the things that I did, just to make a real long story short, was I went around to all the probate courts that were in 30 miles of my hub, which it was in a little uh old brass mill town called Waterbury, Connecticut. So I went to dozens and dozens of probate courts back then and told them that I was willing to take on work. And it doesn't take long in the probate world, uh, especially from the legal perspective, to realize there are so many people out there who are in desperate need of help. And there are so few people who are willing, one and able to to be able to provide the help that these folks need. Um, so I was asked by the probate course to really get involved with a lot of cases as a young buck coming out of school, uh, learning this stuff for the very first time, and and I just did it. I just dove in and I loved it. And more importantly, I really hate seeing broken systems. I hate seeing bureaucracy, I hate seeing inefficiency, and there is nothing more inefficient than our mental health systems. And I said, you know, after a while doing this, it didn't take me long, like five years in. I said, We I've got an idea of how to come up with a better mousetrap. Um, and myself and the probate court administrator and the department of mental health uh medical director, we got together with a whole team of other people, it wasn't just the three of us, but we created just sort of a working model. Um, and Mindy, you mentioned this. It's based on care coordination. It was based in 2001. We started talking about the need for care coordination, and nobody was using that term back then. This was, you know, and nobody really does what we set out to do. Um, I've spoken about it across the country, and that is really my bailiwick. That is my approach to the mental health system and fixing the mental health system and how I got involved and why I'm passionate about it. As much as it's about the individuals, helping that system work better on a macro level, 30,000 foot level, is really my um it really gets my juices flowing.
SPEAKER_01So you don't you don't have a family member or anything with a mental health issue? This is just something that grew out of what you learned when you were making the rounds in probate court.
SPEAKER_00Absolutely. That's wow.
SPEAKER_02I mean, listen, I that is amazing. That's really rare, I think.
SPEAKER_00Yeah, it is. It could be. I, you know, I'm not gonna I'm gonna say I, you know, there may be some family members that have undiagnosed mental health issues. I think we all say that about all of our families, but no, nobody has any significant what we would call serious and persistent mental illnesses or anything like that. I just really saw a need and I and I've tried to fill a fill a need uh in a system that I that I still believe can really help, uh be helpful.
SPEAKER_03You know what's so interesting about that is I don't think I've ever heard somebody talk from that perspective. Everybody always talks about their own niche or their own experience or their own part of the big picture. I don't think I've ever heard anybody say we need to get up 30,000 feet and look at this thing and fix the system. That's really music to my ears.
SPEAKER_01Yeah, that's what they say is the difference between a leader and a manager. You know, the manager goes, Oh, do that tree over there, but the leader's like on top, noticing which trees have to go. Uh I I had a question to ask you. So um it it's while you're thinking, I would split my mind, but Mindy, you go.
SPEAKER_02Yeah, I would like to hear about the the seven C's and also um when you went to implement them, did you run into any resistance?
SPEAKER_00I still run into resistance every single day. Um and and I let me explain. I you know, we we work within a system that has been in place for a long time. Whether it's been a good system or a bad system, it's been in place for a long time. Social work, the uh the occupation didn't really come into existence until the mid to late 60s, right? As we kind of know of it right now. And what we do in our agency is to I I would say that we practice as true as to the book of what social work is supposed to be as you as you could get, right? We do social work, but our system of care has really evolved into something different, right? And and to try to take an entire system and say, wait a minute, you know, grab that whole system by the shoulders and shake it and say, Let's get back to this, uh, you're bound to meet with resistance. A lot of people say, Well, who the heck are you to be coming in to tell us how to do things better? Why can't we get back to thinking outside the box and doing some of the other things and creative things that we've that's why we all got into this work?
SPEAKER_01Okay, so uh, can you get specific about what the seven C's are?
SPEAKER_00And yeah, yeah, uh, you know, and this is all gonna sound so commonsensical now, but at the time that we started this and the time that I was writing about it, getting it out of my head and off the paper, it really uh wasn't and still isn't, really. First of all, uh any system of care that works and delivers uh services uh effectively and efficiently has has seven components that I've that I've discovered. Okay, and they I call them the seven C's, that's from the book. All right, and they they kind of make sense if you follow
The 7 c's of Care
SPEAKER_00them in this order. Client-centered, we have to have take a client-centered approach, think about where our clients are before we go and try to impose upon them our lofty goals for them. We have to be willing to communicate, okay? That's number two. Communication is everything, it is the whole uh the whole uh oil or gas or the straw that serves a drink, whatever you want to say. And there's where we get into the hip hook discussion and and and whatnot. Um systems of care have to be collaborative. And some of these kind of sound the same, but they're somewhat different, and they have to be willing to work together um and share resources. And we're gonna get to that in another couple of C's. But another thing that they have to be is consistent. They have to be, they have to let a client, a family, another service provider know that they are here. Here's the parameters of what they can work within, here's the parameters of what they cannot work within. And we know what the rules that the playing the playing field looks like, and we're all we're all coming at it under understanding the same rules. Comprehensive. When we're working together, I'm not holding any aces up my sleeve, I'm not withholding resources that I have at my disposal because this is my pot of money, that's your pot of money. And Mindy, you could relate to this probably.
SPEAKER_02I can read. I'm laughing, yes.
SPEAKER_00Yeah, right. Um, you know, where you have this is my resource, and it I've got this $40 million pot of gold, and you can't have any of it because this has to go to this. We don't want that. We want to bring all of our resources together for the benefit of our Jim and Nick and and and Ben, right? Committed. We have to let people know and that we are committed on a macro level and a micro level. I'm gonna say that a lot, probably, that the system is committed to change, that the system is not apathetic, that people that work within the system are really dedicated to the clients that they serve. Uh, and the final C is coordinated. This is what sets this program apart from everything else that I've seen across the country. And this is what we've garnered. I think Randy mentioned we've won multiple awards for this program all across the country because of the care coordination component, where you bring in an independent third-party monitoring, reporting, and coordination entity that says, okay, I'm gonna be part of this team and I'm gonna hold all of you guys accountable to your part of a treatment plan. So Randy's job is A, Mindy's job is B, Mimi's job is C. Let's get together in two weeks and I'm gonna check and make sure that everybody's job is being done.
SPEAKER_02That sounds wonderful. It's that checking and checking back that I think is missing in any so-called care coordination that I'm involved in.
SPEAKER_00Well, I think the important piece of it, Mindy, is that you have a checks and balances, but you know, you all know that when you're involved with the a client, a patient, a family member with any kind of mental health issue, there could be five, 10, 30 people who are working on this team. So you have five, 10, 30 different agendas, five, 10 different 30 gods that somebody has to answer to, and to have one uh one central person who is sort of holding that all together, the the spokes of the wheel are all coming back to the center because that person stands with your loved one, it helps everybody to stay on the same page. All the oars are pulling in the right direction.
SPEAKER_01So when you go around the country, are you teaching other people in other states with other systems to implement the seven C's?
SPEAKER_00I'm sharing our model and I'm sharing the amazing results that we've had by using this model um and and encouraging people to say, hey, we should implement something like this. We should try thinking thinking about implementing something like this. And that's my hope. That's been my hope for 20 years is to try to get other people to say, boy, for not a lot of money, not a huge investment, we could really take this commonsensical approach to delivering these services.
Psychiatriasts on Board?
SPEAKER_02And would you get any resistance from um psychiatrists? Because that's the player that that on my son's um team has not the communicator that other people are. And that's that's a huge, huge problem uh for families on in that group, and certainly for our family. Did you find that the psychiatrists were player team players that you worked with?
SPEAKER_00Yes, and no. I can honestly say um, you know, it's I'm not gonna just point to a psychiatrist. I try trying to get any kind of medical specialist to talk to any other kind of medical specialist in this day and age is very hard. You know, trying to get a uh a brain doctor to talk to a heart doctor about the same patient is very difficult to do. And that's very much the case in mental mental health. Um, the resistance comes really, as I said before, from systems of care saying, wait a second, this is different. Why, why would we do it this way? You know, we are the Department of Mental Health, these are all our clients, or maybe the psychiatrist saying, Hey, I'm the most educated guy in the room, I should be in charge of this team, and it's I'm gonna call the shots. But when you have what you find is that at the beginning, where there may be resistance to this kind of involvement, uh within a year, trust me, they come now. It's like you're they're banging down your door because they want you on this case, in that case, and this one. And it's it's remarkable how people change. Change their opinion of us and see us as that collaborator. And we really help to kick doors down that other people don't have the ability to do. Like I don't have a dog in a fight, right? I don't, I'm not beholden to anybody. So I will say things that other people won't say. Maybe that's my personality, right, Randy? You know, I will say things that other people won't say. I I can get away with, you know, making people angry, and I'm putting it nicely, um, because I don't have the same dog in the fight that other people might. Um, so eventually it's amazing how what what collaboration this creates. It's it's really amazing. It blows my mind. It really does.
SPEAKER_01I I know Mimi has a question um and Mindy has a couple more, but I I just want to clarify something. So now I have never used your services, except I think I may have gotten planned through you, Plan Lifetime Assistance Network, so that when my husband and I go, my money won't have to be handled by my daughter. But other than that, I have not used your services, though I have often wanted to. But is this for rich people? Like, how do people hire you? Or are you are you covered by insurance? Like, how does somebody find somebody like you? We have listeners all over the country. How do we find a coordinator that does what you do?
SPEAKER_00Well, the sad thing is that our our type of program is not nationwide yet, right? As much as I've strived very hard to make it so it has not been globally accepted because of a lot of the issues that we've already discussed.
SPEAKER_01Right.
SPEAKER_00Uh, we have a contract with the state of Connecticut to do this work. Um, and for so for people who are fit that um criteria, they can get our program for free. We also looked at it and said, you know, there's the very, unfortunately, the very rich can pay for a lot of services, right? The very poor can't pay for it, but there are a lot of services available to them if they can get into the system. And there's the rest of us that are right in the middle who, you know, we're kind of left out. So we designed a program that is a fee-for-service program where we're going to do this kind of care coordination for that middle-of-the-road family who needs our help. And I don't, you know, expensive, let's put it this. I mean, our charges are basically between $6,000 and $12,000 per year for this type of coordination service. So when you look at the overall cost of what you have spent um to do the work that you've done, I mean, just probably in the last couple of months, you've probably taken six or twelve thousand dollars worth of that kind of dollars. So we are not expensive by any stretch. Now, some people would say, oh God, forget it. I can't even listen anymore. It's out of my range. But that's what that's what we've found it costs us to do the work for our state clients. And we thought it only fair that we replicate that for people who do not qualify for the free service uh and utilize basically that same price point.
SPEAKER_01Right. And I will mention, I know what I wanted to say before, that by the end of the podcast, we'll be sharing links because you do have free tools, free resources, free webinars for families that want to learn some of the tips that you've come up with. So this isn't a commercial for your agency, but knowing about your agency is so important because that model is important and other you maybe change the way people think.
SPEAKER_00I actually made a free mom's link for your listeners too, so they can get a resource that we're that we have available.
SPEAKER_01I saw that. And that will be in the description of the podcast, and we'll also say it out loud at the end of the podcast.
SPEAKER_03So, okay, Mimi,
Family Empowerment
SPEAKER_03did you want to well, I'd like to get a little bit back to the family and this whole issue of family involvement. And I'm wondering why do you think family empowerment is so important and are there core concepts there too?
SPEAKER_00Listen, I've done the work, as I said, on a macro level, looking at the big picture, you know, the forest instead of the individual trees for so long. And I see the systems can change, but I firmly believe that the systems cannot change and will not work without the assistance of the families. You guys are, yes, we have soldiers on the ground, right? But you guys are the total intel that helps what soldiers can do. Without family help, without good family involvement, the rate of success that you guys, I think, talked about in your last episode or one of the one of the episodes, without without family involvement, the rate of success is is drastically diminished. Um, and I think that that needs to go be heralded, it needs to be shouted from the rooftop. So I just don't think that we as a country, as a society, have the money, the time, or the patience to uh put the time in and put the effort in, uh, or and and without families doing it, we're really gonna be in big trouble because this is the tip of the iceberg.
SPEAKER_03So, how do you assist families in getting around or through all these HIPAA restrictions and the unwillingness of doctors to let us in?
SPEAKER_00This is gonna be a sort of a bad word to use, but I really think that having a discussion like this and educating people, and I use that term so cautiously, the kind of educating people, uh just talking to people about their particular case, the situation that they're in, and every single case is different. We all know that. But having the discussion about what's going on with your case, Mimi, and what HIPAA issue are you running into today, and what we can do and who we could try to impress upon to change their mind about your involvement and your your contribution as the team leader, as the the person to go to is so important. I break it really down into three three things. I think the family members have to uh regroup, first of all. You know, you got to take a deep breath at some point, and you have to say, okay, I'm gonna take, I've got to get strength, I've got to get courage to turn inward and look at what's going on and what I want of this situation, how I want this to change. The it introspection takes courage, right? But then when you start doing that introspection, I think you really have to say, What did I want for Ben? What did I what did I want for my son? And what do I think of us as a family? Because no matter what happens, the mental illness that you're going through cannot define your family, and it cannot define you and who you are as a person. Otherwise, all is lost. And then finally, how can you take that connection to what grounds you, that core value, that core purpose, if you will, and use that to be an influencer and to really persuade and cajole and do whatever you got to do to help the team help you, to help your team help your family, and especially to help Nick and Jim and Ben and all the other Nick and Jim's and Ben's of the world.
SPEAKER_02What kind of track record do you have on your teams about getting your clients to sign releases of information? Because that's, I'll just tell you, one of my pet peeves is a lot of mental health providers that we've run into aren't very forceful about asking Jim to sign a medical release, or they don't even ask him, or they assume he doesn't want to, or they ask him in a way like for all the other, here's the one for your psychiatrist, here's the one for this, here's the one for that. They just kind of pass them along, but then they go, and this one is because I've been there sitting there listening, this one is for your mother. You know, do you want your mother to know everything? Or do you want your father to or not? You know, it's kind of asked like that. Um, so I always think HIPAA is a way to not have to take time with families lots of times with some providers. And it sounds like you really value family involvement. So I'm wondering what kind of track record do you have in getting clients to sign releases for families so there's two-way communication?
SPEAKER_00Um, I can't give you an exact number, but I I would say that um we have a very positive uh I mean, vast majority of our clients have signed releases and have uh open lines of communication with us, with their family. You know, what we, if you think about our role, we're actually a conduit between family, service provider, fiduciary, and patient. Um, so once we establish ourselves as an ally, don't forget, I'm not your mother or your father, I'm not your fiduciary, I'm not your lawyer, I'm not the judge. I'm coming in here because I want to know, Jim, what you want and how I can help you to get there. Once that rapport is established and that allegiance, that alliance is established, uh, it really is amazing the things that you can get done together um with with your son and with uh people like him. Our our record, one that I mean, this is gonna sound uh bombastic, but we don't, that's not an even really an issue that comes up in our office, honestly.
SPEAKER_01It really is that speaks volumes about your work. Thank you.
Link for Free resources
SPEAKER_01The link I'm gonna share, I may as well just share it now. You've made us, unless you have it in front of you, share a special link where people can go for free resources, you can go to it's my fe now. Oh, for family empowerment, myfenow.com slash three moms, or you can you can go to myfe now.com slash tools hyphen of hyphen hope. And some of the things I'm reading here is like if you want to stop being caught unprepared when the next crisis hits, get ahead of the chaos and figure out who you need to talk to, consistently get a good night's sleep, stop worrying. There's that's a webinar that that you are offering, and then the tools of hope is a free download designed for people overwhelmed with the challenges associated with mental illness in their family. And there's a free download. You'll connect and be able to honestly and openly connect to your feelings of despondency and anxiety, understand, learn, assemble a team, create a renewed and sustainable sense of hope. Like all of this sounds amazing. So I I'll put those links in the resources, but let's talk about these things a bit. What does, because I know you have the agency, and then you have this other part of your career, which is family empowerment. And you know, what does it look like? The first thing you mentioned to me was education, but you know, tell me a bit about what that looks like to you.
EDUCATION helps families
SPEAKER_00Well, I think that you hit on uh the the word that we we all hit on sort of independent of each other is this concept of hope. I asked um my right hand man and my left hand man, Sarah and Angela, in my office. They are my the other legs of the stool, they are my work wives. You know, I said to them, What's what do we have in our arsenal that I can give to people um that they could use right now, that they could that they absolutely can implement and and that that that will really get them feeling like they're making progress or gaining traction and that they're in action. And both of them, independent of each other, told me that we have to give them hope. And I'm like, well, that doesn't help me, you know, what am I gonna just offer them a box of hope? You know, but it just was interesting to me that they both said once people lose hope, they become apathetic, they become apathetics, as I like to say, and and everything is lost. So I started to think, well, when do people feel the most hopeful? Or where do they feel the most alive and the most um powerful, I guess, empowered, let's say. Um, and I think that's when you are in action, when you feel like you you've got traction towards something. So I developed the tools of hope, uh, which is what you're alluding to there in that download, which I took a 26 page document that we have in our office that we use for intake for our clients, and I culled it down to six pages, and it's really demographic information, it's really historical information, contact information that you could fill out right now, today, and keep that with you and hand it to the next provider you be and the next provider and the next provider, and keep adding to this document and the timeline and keep the story of Ben, you know, going so that you always have it. In addition to your beautiful book, you can hand them that, but you can hand them this document too, because it's so important that people have the information that you have as a family. And by the way, there's nothing to prevent people from receiving information from you. We I know you talked about that in early episodes.
SPEAKER_01We can never say it often enough.
SPEAKER_00You can't say it often enough. Um, so that's just one of the four tools of hope, but that's really what it's about. Right here, you you are establishing a sense of community so that people who are listening to my voice and to your voices are saying, you know, I have that same problem. She understands what what I'm going through, or he saw this too, or you know, I've, you know, psychiatrist in HIPAA, same problem. I have it too. You're establishing that community, community, you're educating people every single time you're on the air, right? I have experts in there who I've interviewed from different perspectives to say to the family, you know, one, as I said before, we need to put you guys. There is no I and there's no I and team, but there is a me, right? Like we need to say, hey, you know, there is a me still here. I'm still a mom, but I'm also I'm a mom of a person with schizophrenia, but I'm also still a me. I'm a person, I have needs, and this doesn't define me. Um, how do I get back there? How do I have time for myself? How do I, what kind of what does HIPAA mean? What does trauma mean? Um, you know, basic definitions, um, just really good educational tools, courses, articles, um, from all over the world, and you know, not just stuff I write, but other people we share, um, and just really having things trickled out to people in a way that's consumable, that they're not googling their fingers to the bone and winding up with more questions than they than they started with, uh, which I think is very true of a lot of parents. It just means having information at your fingertips or knowing where to go to get an answer when you need it. And I think that's so important for so many people who are not sleeping at night.
SPEAKER_03Well, you know, something else that stems from that too, I think, is, you know, when I look back, Nick's been sick for 20 years now. And I know I've done my best. But what keeps me awake at night is all the lost time, all the missed opportunities, not because I didn't try, not because I wasn't on it 24 hours a day, but because there was no map. And with schizophrenia, like many diseases, but certainly with schizophrenia, lost time is further decompensation, is further degradation of the brain, is further advancement of the disease, and you can't get that back. You know, if I'd known 20 years ago what I know now, I'm absolutely convinced that his trajectory of his illness would have been different and better.
SPEAKER_00And as you know, Mimi, there's no way to definitely definitely say that, but but you you know your son and you know how it impacted him along along the way. I mean, there's a woman that's on our website. Um, her name is Mary. Her son has been going through this for almost 40 years, and I'll never forget the time I was at a NAMI meeting as a guest, they asked me to come and speak. And I
Breaking the News: This isn't going away
SPEAKER_00I'm getting chills just thinking about it. I basically had to tell a client, a client, a woman who was participating in the meeting that this isn't going away. She didn't understand that, and it broke my heart. Um, but just because it's not going away and your kid's only 19 years old doesn't mean that life is over for any of you. And I know you you speak a lot about in your earlier episodes about early signs. Randy, it's definitely a lot in your book about potentially early signs of schizophrenia and other mental health disorders. Um, but it's such a slippery slope once you start going down there. You know, I could convince myself if I go on WebMD right now, I can convince myself that I've got every kind of cancer under the sun, right? You know, and every weird tropical disease there is. So we got to be careful about that. But yes, I totally agree that if you're if you're experiencing things and you could share with other people what your experience is and how you dealt with it at the time. Or did you jump on this particular Randy? You thought it was pop, right? A lot of pots.
SPEAKER_01Yeah, we all did, we all did. Because it's it's who would jump immediately to schizophrenia, especially when it comes on gradually, and it it's called normalizing, and we think we can fix it because if I can fix it, it can't be that bad. And I think it's a normal human response, but with schizophrenia not going away, as you say, yeah.
SPEAKER_03So I think the sooner you accept that, the better off you're gonna be. You know, Michael, for me, it's in my book, this uh thing that happened for me. It was the woman who folds the towels at Kaiser Permanente during uh Nick's first hospitalization, saw me running around like a chicken with my head cut off and pulled me into the closet and just into the janitor's closet and just schooled me. She said, Look, my husband has what your husband, what your son has. I know what this is. And basically the same thing. She said, This is not going away. So get your act together and get out there and advocate for your son. And it was one of the best things anyone ever told me.
SPEAKER_00That's an awesome story. And you're she found the right victim, so to speak, in you, because you are obviously a strong person who was gonna step up and do that. There is a remember of the the far side, Gary Larson, the comic show. Yeah, he had he had one that I think of all the time. It was two deer talking to each other, and one of them had uh uh a target on his belly, and the other one said, That's a bummer of a burkmark, Al, you know. And I think about that because I think a lot of people in your position, Mimi, well, for all of you and everybody listening, you don't necessarily want that mantle, you don't want that target on your chest, right? As the the leader or the team member or the the mom who's gotta step up and take charge. But if not you, who? And if not now, when? And if not what not now or what why not? You know, I really encourage people to do that. And I thank you for bringing that up, Mimi, because it just it really scares me when you have families who are defeated, and it really makes, I mean, it's just so painful to see all these families out there that I'm trying to reach that just they know what they're doing isn't working, but they don't know what to do about it.
SPEAKER_02That's part of why we do this podcast. Um, I'd like to get back to your tools. Um, one of them you just mentioned, which I think is a really good one, and it's actually one I've tried to do, and that is just have a I try to keep it to one page, a summary of how my son is doing. And whenever he changes providers, then I give that summary to the new provider, and then I copy it to all the other providers so they have an updated version, and I want it to be in the front of the file and just one page so they'll possibly read it. I even highlight and underline. But so that I I love that tool. And so I'd like to hear more of are there a couple others that you think even if somebody doesn't live in Connecticut and they can't be in your program, could you give us some some more pearls of wisdom tools that anybody could actually do if they just knew about them?
SPEAKER_01Yeah, and I also see that there are interviews here and HIPAA lessons, online courses. Tell us more about what's available to help people.
SPEAKER_00Sure. Well, to Mindy's point, one of the things that we came up with is an infographic to describe what we do in terms of care coordination. So if you could picture the uh a wheel, right, and in the center of the wheel is your your child, and then surrounding that wheel are as many spokes and as many providers as may be involved in the life. And you know how confusing that is, and you know how confusing that can be. So, as to your point, Mindy, one page, real quick infographic, look down. Here's the psychiatrist, here's a conservator, here's the lawyer, here's the social security worker, you know, naming all these people, all these circles of this spoke, all of the spokes all the way around the wheel, so that at a glance you could see who's who, what their relationship is to the case, and maybe what their relationship to other providers is. Uh, we call that our our care coordination infographic. It's sort of exactly what you just described. Um, and and that's something that I've used for 10 years and shared with many, many people. Uh, another topic.
SPEAKER_02That's excellent. Um, just before you go on, um I'm the president of NAMI Ramsey County, my local. Local affiliate of Ramp of NAMI. And just next year, we're going to ask our county to do that because these are all very active parents, leaders, strong people, they're not defeated, they're activists on this on our NAMI board, but they don't all know what is available in the mental health system. And so we're going to work with, you know, try to get a chart from our county, have meetings about it, see where there are gaps and see where we can advocate with our county. But I was shocked actually, because I've been around like Mimi and Randy, you know, for 20 years working on all these things, and that there were so many people that weren't that far behind me with their children's illness who didn't have that big, don't have that big picture in mind. So I think it's it seems obvious, but it's not very important.
SPEAKER_00The number of people who are involved in some way in the mental health community who don't know what's available. I mean, people that never even heard of schizophrenia before, people who've never heard of the Department of Mental Health before. It blows my mind. Another tool that I have is uh that's easy to download and you can have is just basic definitions. We throw around all these words all these time, all the time, right? Even when you're talking about in-home care, what's the difference between a CNA, a VNA, an RN, an LPN? You know, just so definitions here. Here's some simple definitions that you could have just to have them. Another thing that I I want to give people is whenever you go to a meeting, uh a case conference, a whatever for your loved one, here's well, I want to I want you to have the seven C's, right? And I have an infographic about that, and make sure that your focus is based around these seven, but also here's questions based upon these seven C's and a way to establish a regular way of communicating with people so that we're all speaking the same language, and we're we, you know, so we we here's 10 basic questions that every time we get together, we should ask each other and have answers to. Um, just so we know we're all on the same page. And that's one of the downloads in this free tools of hope. And by the way, it's been downloaded thousands and thousands of times all across the world, which I can't believe. I'm really psyched to be able to say that. You know, when you finally see international things happening, it's kind of a it's kind of uh, I don't know, makes you you know skip a beat.
SPEAKER_02But well deserved.
SPEAKER_00What's that? Well deserved. Yeah, it's it's pretty cool. It's pretty cool the reach that you can have and with a podcast or with this type of thing. So there are things that people can have and people can do. Um, you know, as I said, as Randy was saying, you know, I've interviewed people that are friendly with me that from across the country that I know from this work. Just to throw your expertise into this. Help me, help me to to make a real making a decision is a horrible thing, right? It's a horrible place to be where you're making some really tough decisions for a loved one. Well, how can we do that with what's a formula that we could use that's a bulletproof formula for making a decision? Or how do you know what are some tools that we can use to help make a decision with our loved one? God forbid, you know, we actually include our loved one when we're making decisions. I'm saying that obviously very sarcastically because it makes me crazy when that happens. Um, how do we have community? How do we have conversations with our with our kids about their illness in an adult fashion where there's not tempers flaring and there's not, you know, strife? There's, you know, how what what tools can we use for that? I mean, that's very important. You don't want to live in a house walking on eggshells in your own home. So, how do you establish what's good and what's not good and have those conversations? This is all the kind of things that I really want families to to have, siblings, as I talked about before, their their brothers and sisters. What's fair? What's fair for them to expect of their and this is all at the links that you gave us? Just um the Tools of Hope is one link. The webinar, when they get download the Tools of Hope, they will get an invite to the webinar. And it's I'm doing it uh and it will be evergreen, so they'll be able to your listeners can have that. And then we I have a program that they can in get involved in that has a lot of the stuff that I'm talking about as well.
SPEAKER_01I just see here that you said there's community. So are there blogs, are there places people can comment and talk to each other? And we've got you have a Facebook page too, do you not?
SPEAKER_00We we have a Facebook page, but what we've done is experience is that people don't necessarily want to share a lot and be really out there in Facebook, uh, in social media per se. So what we did is we created our own Facebook. There's a uh platform out there called Mighty Networks, so you could create your own for back lack of better word, Facebook like community. And we've done we've created so we have in their podcasts, we have blogs, not podcasts, but blogs, we have articles, we have sort of like weekly questions, we have sort of can anyone access this? Yeah, yeah, it's at myfenow.com. Um, and there's a free membership, and then there's other levels of membership that people can get into. There's a there's a VIP course that's six months of um of this kind of resource, these kinds of tools that are trickled out to them on a weekly basis and courses that they can go through at their own pace and whatnot. So just because I really think that family, as I say, family, family members are are it, they're they're everything to help the system really effectively treat this epidemic that's been going on under our noses for hundreds of years, right?
SPEAKER_01I mean, I will say that if I were to say the one thing that has helped me the most in dealing with the changes in my family from my son's schizophrenia, it would be education. But just learning about it and part of education really, you can't separate it is community and support. That's why for me, NAMI Family to Family was and is so powerful because I learned things that no one ever taught me. No one ever, why would they? Hopefully, you never need it. Other people's books have helped, but to have these things available online is huge. Do we have any last final questions, burning questions that haven't been answered, or final words to to um Michael? I'm gonna let you have the very last word. So I since I'm talking, I'll just say for me, if you're a family member and you're dealing with someone with schizophrenia, get as much education as you can. That's going to help you so much. And I won't say demanding, but I will say insisting that they receive information from you, even if they don't feel they can give you information. Those things will help you begin to coordinate the care of your loved one.
SPEAKER_02And I will say thank you to Mike because you're helping with the education that Randy is talking about. And um, I'm especially glad that HIPAA is one of the things you educate about. Um, obviously, you're modeling it because most of your clients sign releases, and that is a testament to how you present them and how you feel about them, and you're not threatened by parents with when you have all this parent empowerment in your in your education that you do. So I think that's maybe you know one of the single most important things that you do is educating people about HIPAA so they can communicate, and then you do communicate because I was a teacher at one time, and um, I always knew that if I uh worked with parents, even though some of them might take a lot of my time, eventually we could have a streamlined relationship. I could quickly contact them if I needed something, and it worked out so much better for the student. So, teachers, new teachers have to learn that, not to be threatened by parents and to involve them. It makes everyone's job easier and the students do better. And to me, that's exactly what you're doing with the mental health system. So thank you.
SPEAKER_00Thank you.
SPEAKER_03Yeah, I just I mean, again, what I said before, for you to say you're looking at this system that doesn't work well, and you don't like that, you want to fix a system, the system. Thank you, because that is what's needed. And that's you know, from the beginning of this for me was just for years of going, I can't believe this is how this works. How do I figure this out? It's so because I'm smart, I went to college, I have resources, and it's like I felt like I was down the rabbit hole. And I think for me, privileged, white, middle class woman, you know, I'm way ahead of the game to begin with. What about everyone else who doesn't have those three steps ahead for them? And this is what we need. We need to educate people while simultaneously fixing the system. So thank you.
SPEAKER_00Thank, thank you all. And you know, I I as I said, now I think I'm kind of an industry insider now. Like I'm, you know, I'm not a parent, I'm not a consumer, as they say, of these services. But I would say, from the from the perspective of being a provider or at least a service-oriented team member, I say thank you to you all for your leadership role, for your and for the work that you're doing to encourage other parents to do this. Because I say thank you to the parents who want to get involved. I say thank you to the families who are willing to stick in there with their loved ones, because that's not always the case either, guys. It's unfortunately. So, you know, I it to me, it's a no-brainer. It's almost silly to say thank you to a parent. You guys are just with without parents, without family, we're all we're all lost. And and that is absolutely true for the work that I do. You and the families that are listening make it possible to get progress. We're not going to cure necessarily, but we're going to make progress. And that's we can't be reactive. We've got to be proactive.
SPEAKER_01That's a that's a great message. This is Schizophrenia, Three Moms in the Trenches with Michael Macknac. His website is michaelmacknac.com. You can also, especially in Connecticut, but you can go there anyway, guardianct.org. And free resources are available at myfe now.com slash three moms or slash tools hyphen of hyphen ho. And thank you for joining us.
SPEAKER_00Thanks for having me again.
SPEAKER_01Hey, thanks for joining us for this episode of Schizophrenia Three Moms in the Trenches with Randy K, Mindy Gryling, and Miriam Feldman. To get in touch with Emma Sword to learn more about our books, please visit our websites at MiriamHyfenfeldman.com, mindygryling.com, or randyk.com.
People on this episode
.jpg)
Podcasts we love
Check out these other fine podcasts recommended by us, not an algorithm.
Good at Heart
Randye Kaye
Inside Bipolar
Gabe Howard & Dr. Nicole Washington
Unseen & Unheard
Unseen & Unheard
The Life Talk Show: Randye Kaye, Nicky Tomboulides, Diana Hall
The Life Talk show