النص الكامل لحلقة Support, Not Control: A New Approach to SMI Decision-Making. (Ep. 148)

to support the person to understand their choices, generally, again, around medical and mental health decisions. 00:02:45.759 --> 00:02:57.840 The person is then encouraged to make a decision, but that decision is not given effect or honored unless consensus is reached among everyone. 00:02:58.000 --> 00:03:03.759 So essentially, the doctor has a veto over the person's decision. 00:03:03.919 --> 00:03:06.800 And for some people, that works just fine. 00:03:06.960 --> 00:03:10.960 And I want to make, I want to say people have the right to choose the model they use. 00:03:11.360 --> 00:03:28.080 I often say the only potentially difficult thing about that is if you do that without exploring supported first, you're essentially giving someone else veto power over your decision making. 00:03:28.319 --> 00:03:37.439 And that would make a person with disabilities the only person in the country who doesn't have the right to make a decision against medical advice. 00:03:37.599 --> 00:03:41.919 You're not under guardianship, but the doctor has the final say. 00:03:42.319 --> 00:03:44.879 And there can be a power imbalance there. 00:03:45.120 --> 00:03:47.599 So I say again, explore. 00:03:48.000 --> 00:03:49.759 Shared may be best. 00:03:50.240 --> 00:03:51.039 It may not. 00:03:51.280 --> 00:03:53.360 Supported decision making may be best. 00:03:53.520 --> 00:03:54.479 It may not. 00:03:54.719 --> 00:03:56.639 You find what's best for the person. 00:03:56.960 --> 00:04:07.039 Well, we have to figure out that that sweet spot with the nuance, because what this reminds me of is I just had a big argument with somebody about mental institutions. 00:04:07.280 --> 00:04:13.439 And in this whole thing of how we emptied out all the mental institutions because they were being abused by people. 00:04:13.919 --> 00:04:23.519 Well, one of the reasons, you know, being abused by people, all kinds of nefarious and other uh uh reasons for doing it. 00:04:23.759 --> 00:04:32.160 And yes, that needs to be stopped, but we shouldn't have gotten rid of all the bets because there are people who legitimately need that. 00:04:32.240 --> 00:04:38.639 And I just think that we need to see these areas of grade, the nuance in this, because there isn't a black and white answer. 00:04:38.959 --> 00:04:49.839 Our systems are famously not good at graze, and the pendulum swings to over-protection and then it swings to under protection or under service or over-service. 00:04:50.480 --> 00:04:52.720 And we need to find that balance. 00:04:52.800 --> 00:04:56.720 And that's the beauty of the work we're doing in the supported decision-making realm. 00:04:56.800 --> 00:05:02.560 And the sometimes people roll their eyes about buzzwords and that realm of person-centered work. 00:05:02.879 --> 00:05:04.480 That's the essence of that. 00:05:04.639 --> 00:05:13.199 Finding that balance between right levels of what a person needs, safety, protection, health, and what they want. 00:05:13.519 --> 00:05:18.720 Self-determination and living the life they want to live and finding that balance. 00:05:19.519 --> 00:05:32.240 So if that little snippet of conversation has wet your appetite to find out more about supported decision making, keep listening to this episode of Schizophrenia Three Moms in the Trenches. 00:05:44.560 --> 00:05:44.959 Oh my god. 00:05:45.439 --> 00:05:46.319 Approaching. 00:05:46.720 --> 00:05:47.839 I know, I know. 00:05:48.000 --> 00:05:50.399 It's five years together. 00:05:50.720 --> 00:05:53.199 And we started during COVID. 00:05:53.360 --> 00:05:54.000 Yeah. 00:05:54.480 --> 00:05:57.439 So it it may be more than five years. 00:05:57.600 --> 00:06:00.560 Uh, we are approaching the end of season six. 00:06:00.720 --> 00:06:02.959 We have two more episodes to go. 00:06:03.279 --> 00:06:10.079 And during this season, uh Mindy's son has stabilized quite a bit. 00:06:10.240 --> 00:06:14.480 I would say Mimi's has been status quo, doing a little bit better. 00:06:14.639 --> 00:06:19.360 And mine has spiraled and spiraled back and gotten better and gotten worse. 00:06:19.680 --> 00:06:33.920 I want to say that our topic tonight is about supported decision making, support, not control, a new approach to serious mental illness decision making. 00:06:34.160 --> 00:06:44.079 My son, who I call Ben for public purposes, could have greatly benefited from what I believe we're going to discuss tonight. 00:06:44.160 --> 00:06:54.000 In the last few episodes, we're really trying to reach out to families and to practitioners to understand what things are possible when everybody works together. 00:06:54.160 --> 00:06:56.879 And I think that's what tonight is about. 00:06:57.120 --> 00:07:03.040 Um, if you listen to the podcast, you know that my son was wandering homeless in my hometown. 00:07:03.199 --> 00:07:10.959 I was waiting for him to get psychotic enough to qualify to be hospitalized, which he did. 00:07:11.120 --> 00:07:18.160 And I was excited, and they sort of stabilized him on a med that I told them was not really effective enough. 00:07:18.480 --> 00:07:23.519 They really kind of disregarded my advice, shall we say. 00:07:23.920 --> 00:07:34.959 And uh we did fight for him to be discharged to a sober home of his choice, as opposed to just let out on the street and or to a shelter. 00:07:35.199 --> 00:07:40.480 And I'm here to tell you he lasted six days in the sober home. 00:07:40.800 --> 00:07:46.639 He is somehow back in my hometown wandering. 00:07:46.720 --> 00:07:50.000 Um, I don't mean to laugh about it, it's just I don't know what else to do. 00:07:50.160 --> 00:07:53.279 Um that's sometimes the all we can do. 00:07:53.759 --> 00:07:55.920 We can't go around crying all the time. 00:07:56.240 --> 00:08:05.920 No, and I don't cry, you know, I I compartmentalize, but it's it's exactly where we were five weeks ago. 00:08:06.240 --> 00:08:14.160 And I have to say, the social workers in the town where he lived for six

days are amazing. 00:08:14.319 --> 00:08:19.600 And they called me and they're trying to do everything they can, and they're working with our local police department. 00:08:19.759 --> 00:08:26.319 The social worker, God bless you, social workers, thank you, thank you, in the police department have reached out to me. 00:08:26.399 --> 00:08:27.519 And I'm in touch. 00:08:27.680 --> 00:08:41.200 I'm understanding that a lot of people are calling and complaining about him, but he can't, there's nothing he's done yet or is doing that is more than the police, who are wonderful. 00:08:41.840 --> 00:08:45.279 Who are wonderful, but they're stymied by the system as well. 00:08:45.440 --> 00:08:51.360 And all they're really legally allowed to do is to say, you're disturbing people, please move on. 00:08:51.519 --> 00:08:52.960 So that's what's been happening. 00:08:53.039 --> 00:08:56.720 Um by tomorrow, he will have been four weeks since his medication. 00:08:56.960 --> 00:09:03.600 And I suspect that um within a few days he'll be hospitalized again. 00:09:03.759 --> 00:09:04.559 We shall see. 00:09:04.799 --> 00:09:08.559 But I will say that I always like to talk about strengths as well. 00:09:08.960 --> 00:09:15.200 He remembered my birthday and he texted me to wish me happy birthday and hope that I'm okay. 00:09:15.440 --> 00:09:27.039 So it's like my book has been behind his voices because you know, no matter what else is going on so far, his good, sweet, kind nature is still in there underneath all the symptoms. 00:09:27.200 --> 00:09:28.799 So that's kind of where we are. 00:09:28.879 --> 00:09:36.080 Um and we should maybe mention for if there are any new viewers or people that just don't remember, you are in Connecticut. 00:09:36.240 --> 00:09:36.559 Yes. 00:09:36.720 --> 00:09:50.879 And Connecticut and Massachusetts are the only two states in the entire country that don't have a um any ability to intervene until he gets into big trouble. 00:09:51.360 --> 00:09:51.759 Right. 00:09:51.919 --> 00:09:53.840 And you know, we we call that AOT. 00:09:53.919 --> 00:09:55.360 We have many episodes about it. 00:09:55.519 --> 00:10:09.120 If you go to where you listen to our website, and if you just put something in the search, like if you want something about ABLE accounts, just put ABLE in the search and and the episodes will show up. 00:10:09.200 --> 00:10:10.080 It will show you what. 00:10:10.240 --> 00:10:16.559 So if you want to know about AOT, which is assisted outpatient treatment, uh, we have episodes about that. 00:10:16.799 --> 00:10:18.799 We there's a lot of episodes to listen to. 00:10:18.879 --> 00:10:21.840 I hear from people who are like, oh, I just started listening, but it's a lot. 00:10:21.919 --> 00:10:24.639 And I'm like, well, get specific to begin with. 00:10:24.799 --> 00:10:32.240 We have what if you put in stories, if you put in siblings, if you put in spouses, you'll episodes will come up that will help you. 00:10:32.399 --> 00:10:36.240 I also have put in uh keys for our guests. 00:10:36.480 --> 00:10:38.000 So we're here to help you. 00:10:38.159 --> 00:10:39.519 We're here to be honest. 00:10:39.679 --> 00:10:41.600 We each have a son with schizophrenia. 00:10:41.679 --> 00:10:47.679 We've each written a book about it, and we are going to meet for the first time in person. 00:10:48.320 --> 00:10:53.679 We've met each other, we've all met each other, but we've never been all three of us in the same room. 00:10:53.919 --> 00:10:58.960 It's going to happen at the end of the month, and we'll report after the fact where we're getting pictures, right? 00:10:59.440 --> 00:11:00.639 Yeah, very good. 00:11:00.720 --> 00:11:00.960 Yes. 00:11:01.279 --> 00:11:02.000 Very excited. 00:11:02.080 --> 00:11:11.679 It's the wonderful folks at Silver Hill creating um a conference, and we're very excited to to have our arms around each other in the same room. 00:11:11.919 --> 00:11:29.519 So I will say um that, you know, we um there are states that have AOT and they call them different things, but they do vary in how well they can enforce it, you know, the right to dictate treatment. 00:11:29.679 --> 00:11:31.440 So anyway, that's where we are today. 00:11:31.600 --> 00:11:33.360 Tomorrow can be another day. 00:11:33.679 --> 00:11:44.159 I was really, really excited when I went to NAMI, Indiana last week and got to speak about how to manage to have joy in your life even when your loved one is not doing well. 00:11:44.320 --> 00:11:45.919 So thank you to them. 00:11:46.320 --> 00:11:55.440 All right, with that in mind, what would have helped so much is something that we are calling, well, we're not calling it, but it is called supported decision making. 00:11:55.600 --> 00:12:11.519 And our guests are Jonathan Martinez, who is the founder and principal of Lightpath Advocacy, lightpathadvocacy.com, and Anita Raymond, who's the director of the Center for Excellence in Supported Decision Making. 00:12:11.679 --> 00:12:16.159 So both of you, please join us and thanks for coming on the podcast. 00:12:18.399 --> 00:12:19.200 Thank you. 00:12:19.440 --> 00:12:20.799 Thanks for having us. 00:12:21.120 --> 00:12:22.639 Oh, our pleasure. 00:12:22.799 --> 00:12:26.879 So, Mindy, you are the one that's spearheaded bringing these wonderful guests on. 00:12:26.960 --> 00:12:31.039 So I'm going to let you kick it off with any anything you want to say and the first question. 00:12:31.440 --> 00:12:37.200 Okay, well, I will say that I am learning about this topic myself. 00:12:37.360 --> 00:12:47.519 I just happened to meet Anita because we're both from Minnesota, and we were at the retirement party for a wonderful person who used to work at Nami, Minnesota. 00:12:47.759 --> 00:13:02.720 So I heard her, everybody talked a little bit about what why they were there, what they did, and I perked up my ears because I thought I'd been around the block, you know, many times, and I had not heard of supported

decision making. 00:13:02.799 --> 00:13:06.480 And it's because it's fairly recent. 00:13:06.639 --> 00:13:11.360 And so we're going to learn about it tonight, and I am going to learn about it as well. 00:13:11.519 --> 00:13:19.600 And then when we invited Anita, uh, quite frankly, my two co-hosts and a Minnesota person again. 00:13:19.759 --> 00:13:20.480 So Anita. 00:13:20.960 --> 00:13:22.480 But you guys have all the answers. 00:13:22.799 --> 00:13:23.759 Well, I don't know. 00:13:23.840 --> 00:13:30.799 We have a lot of the right pieces, and we need many more of those pieces and even more pieces. 00:13:30.960 --> 00:13:35.200 But this one I think is one of the right pieces from what I've so far learned about it. 00:13:35.279 --> 00:13:47.840 So Anita suggested Jonathan, and she said she could think of four or five people that also worked with supported decision making nationally, but he was the most famous. 00:13:48.000 --> 00:13:52.879 So, of course, I went after him, and he's kindly agreed to be here tonight as well. 00:13:53.039 --> 00:14:03.279 So the first question is if you could each share your story and how you got involved in supported decision making. 00:14:03.759 --> 00:14:05.679 So, Anita, do you want to start? 00:14:06.080 --> 00:14:06.639 Sure. 00:14:07.360 --> 00:14:22.879 So most of my social work career has been in the guardianship arena, assessing clients for the need for guardianship, establishing it when it's necessary, certainly seeking less restrictive alternatives was something we talked about all the time. 00:14:23.120 --> 00:14:28.399 But really, I will say looking back in my long career, I really carried a bias. 00:14:28.480 --> 00:14:37.759 Um, I really was looking at my clients, the people I was serving through a lens that focused first on their vulnerability, on their disability, their need to be protected. 00:14:37.919 --> 00:14:41.519 So for much of my career, I was focused on protection, protection. 00:14:41.600 --> 00:14:46.320 And so I think I probably, not probably, I use, I overused guardianship. 00:14:46.480 --> 00:14:50.480 Um I saw it as a solution far more often than I do now. 00:14:50.720 --> 00:14:56.639 I first heard about supported decision making when Jonathan, and you'll hear his story in a minute. 00:14:56.720 --> 00:14:59.120 Um, so just a tiny bit of a spoiler alert. 00:14:59.279 --> 00:15:15.120 So I um was reading the news, the national news, and I heard about this attorney and this young woman in the news, and they were with a couple of this one young woman's friends, and they were working on terminating this woman's guardianship that her parents had established over her. 00:15:15.360 --> 00:15:17.120 And this is where I was back then. 00:15:17.200 --> 00:15:26.000 And this is about we can all learn and grow, and we do the best we can with what we know at the time, and we learn more information, and maybe our views change a little, or maybe they don't. 00:15:26.080 --> 00:15:29.519 But at that time, I was thinking, who are these people? 00:15:30.000 --> 00:15:31.279 How dare they? 00:15:31.519 --> 00:15:37.440 How dare they interfere with this guardianship that a court established and get in the way of the parents? 00:15:37.679 --> 00:15:38.799 What's that about? 00:15:39.360 --> 00:15:48.720 I wrongly and pessimistically predicted we're gonna read in the near future, in the years to come, we're gonna read that they took advantage of this young woman. 00:15:48.879 --> 00:15:51.279 And how obvious isn't that funny? 00:15:51.440 --> 00:15:55.360 Um, so so I I had that very skeptical view. 00:15:55.600 --> 00:16:10.080 And as I listened more and tried to hear more and tried to keep an open mind and hear actually what supported decision making was, which we'll get to, I started thinking, well, okay, as skeptical as I was about this Jonathan Martinez guy. 00:16:11.519 --> 00:16:25.360 That sounds like what I actually have been talking to families over all my years to be doing anyway, to in when it was appropriate when they could to try these approaches to help support someone without having to go to guardianship. 00:16:25.679 --> 00:16:30.399 So I was both skeptical and wanted to learn more and have evolved since then. 00:16:30.480 --> 00:16:34.559 And I think we'll get into it, but I also want to let Jonathan tell now his his story. 00:17:02.970 --> 00:17:03.530 Thank you. 00:17:04.170 --> 00:17:05.049 I got lucky. 00:17:05.769 --> 00:17:07.210 Um that's my answer. 00:17:07.450 --> 00:17:09.450 I am I'm lucky for a living. 00:17:09.930 --> 00:17:18.970 Um I'm I'm lucky because I get to work with people on getting what they need to be as independent as they can, to live the best lives that they can. 00:17:19.289 --> 00:17:27.529 I have been lucky to work uh as an attorney, working with people with disabilities for more years than I want to to count. 00:17:27.849 --> 00:17:32.330 But what happened to me was I never thought about guardianship. 00:17:32.410 --> 00:17:36.490 And that's a that's a a source of a little bit of uh embarrassment and shame. 00:17:36.650 --> 00:17:37.769 Never considered it. 00:17:37.930 --> 00:17:39.690 Um it was just something that happened. 00:17:39.850 --> 00:17:43.130 And there's nothing wrong with guardianship, by the way, when it's right. 00:17:43.210 --> 00:17:45.850 My uh my godson's under guardianship, thank God for it. 00:17:45.930 --> 00:17:48.250 So there is nothing wrong with guardianship. 00:17:48.410 --> 00:17:50.170 I just never gave it any thought. 00:17:50.410 --> 00:18:02.490 Um, and then one day, uh, this woman who I call the world's most petite giant walked into my life and said, I don't want to be in this guardianship. 00:18:02.730 --> 00:18:05.289 Um, I'm not allowed to do the things I want to do. 00:18:05.370 --> 00:18:09.130 I'm not allowed to go to my job, I'm not allowed to go to my house, not allowed to go to my church. 00:18:09.450 --> 00:18:10.809 Can you help me? 00:18:11.049 -->

00:18:18.730 Um and I looked at the case and I basically said, Oh my God, um this is wrong. 00:18:19.289 --> 00:18:28.090 And we wanted to find a way for this young woman, I'm gonna tell you more about Jenny Hatch later, to have her rights, to have her life. 00:18:28.250 --> 00:18:31.850 And it turned out that Jenny was doing the same things we all do. 00:18:32.009 --> 00:18:39.370 When we talk about supported decision making, by the way, spoiler alert, it's a fancy way of saying what we already all do. 00:18:39.690 --> 00:18:43.130 We all get support to make decisions every day. 00:18:43.289 --> 00:18:47.769 When I before we started this podcast, I said, should I put on a better shirt? 00:18:48.009 --> 00:18:50.970 And you all had different opinions about that. 00:18:51.049 --> 00:18:53.610 That led to me deciding to put on a different shirt. 00:18:54.330 --> 00:18:56.170 That's supported decision making. 00:18:56.330 --> 00:18:58.970 I got information that I needed to make a decision. 00:18:59.130 --> 00:19:05.049 And supported decision making is as simple as a decision as that, and as complex as where should I live? 00:19:05.210 --> 00:19:06.490 Should I get medical care? 00:19:06.650 --> 00:19:09.210 Who should I see and what should I do? 00:19:09.610 --> 00:19:19.289 Um, and the more I read about it, the more we talked about it, the more it is the right thing to do whenever possible. 00:19:19.690 --> 00:19:22.730 So it's not a question, and I was want to lay this out here. 00:19:22.890 --> 00:19:26.650 We're not gonna talk about guardianship or supported decision making. 00:19:26.809 --> 00:19:28.170 It's not an either or. 00:19:28.410 --> 00:19:31.370 We're not talking about one thing being bad and one thing being good. 00:19:31.529 --> 00:19:40.330 What supported decision making is is empowering people wherever they are and where whatever they need to do as much as they can do. 00:19:41.529 --> 00:19:43.850 Can I interrupt with just a comment here? 00:19:44.009 --> 00:19:48.809 And you know, it so for listeners who may be a little bit like, what? 00:19:49.370 --> 00:19:53.210 So guardianship in some states is called conservatorship. 00:19:53.450 --> 00:19:58.890 And you can have uh you can be conservator of person and or conservator of a state. 00:19:59.049 --> 00:20:00.569 At least that's how it works in Connecticut. 00:20:00.890 --> 00:20:18.170 So if you're conservator, conservator or conservator of a state, if your loved one literally cannot manage their money at all, that can give you certain rights like their social security will be paid to you, you're the representative payee, you dole it out to them. 00:20:18.490 --> 00:20:22.009 It it guardianship depends on who's the guardian. 00:20:22.170 --> 00:20:27.610 Because I have been my son's uh conservator for I was for a long time. 00:20:27.769 --> 00:20:31.049 And for the many years, it was supported decision making. 00:20:31.130 --> 00:20:33.930 Because I just went, I'm just here if

you get in trouble. 00:20:34.090 --> 00:20:38.569 And that's how we, and when he was doing well, that's how we did it. 00:20:38.730 --> 00:20:43.529 I said, I just want this so that if you have to go, if you go into the hospital, I can get information. 00:20:43.690 --> 00:20:44.970 So he agreed. 00:20:45.210 --> 00:20:58.009 So, you know, conservatorship or guardianship can play out, I believe, unless I'm wrong, as supported decision making, if if it's handled that way, but it isn't always handled that way. 00:20:58.090 --> 00:21:04.250 And what people always bring up to me is Brittany Spears and you know, and how controlled she was. 00:21:04.490 --> 00:21:22.170 So uh is it true that there are there's a great variety, at least among how family members handle guardianship, that sometimes guardians are doing an informal form of just supported decision making. 00:21:22.250 --> 00:21:24.650 Or is that too cagey? 00:21:25.130 --> 00:21:32.410 Actually, perfect, because the first time my sister ever heard me speak on the subject, she said, I just thought that's what you were supposed to do. 00:21:32.569 --> 00:21:35.529 She is my godson's guardian and she's awesome at it. 00:21:35.769 --> 00:21:37.769 Um, it's funny that you're in Connecticut. 00:21:37.850 --> 00:21:42.730 I'm doing a ton of work with a task force in Connecticut on supported decision making. 00:21:42.809 --> 00:21:46.650 We have been working to get legislation passed for a couple of years. 00:21:46.809 --> 00:21:50.730 Uh if you're interested, I can give you some people to contact. 00:21:51.289 --> 00:21:51.529 Great. 00:21:51.769 --> 00:21:52.250 Thank you. 00:21:52.809 --> 00:21:58.890 And speaking of legislation, Minnesota did pass some to encourage this type of decision making. 00:21:58.970 --> 00:22:01.610 Maybe, Anita, you could tell tell us about that. 00:22:01.769 --> 00:22:08.410 And then I would like to hear, Jonathan, if that's the same legislation that you're working on in Connecticut. 00:22:08.490 --> 00:22:11.210 I'm interested in legislation immediately. 00:22:11.370 --> 00:22:16.970 For those of you who don't know, Jonathan, maybe I'm a former state legislator in Minnesota. 00:22:17.049 --> 00:22:21.850 So, Anita, what is it that uh Minnesota could you tell us what Minnesota passed? 00:22:22.250 --> 00:22:31.529 So, what we did in Minnesota back in 2020, um, a group of us came together and worked on some Guardianship reform and we made several changes within within our guardianship statute. 00:22:32.009 --> 00:22:36.490 One of which is to give a definition of supported decision making, right? 00:22:36.730 --> 00:22:39.769 We embedded it right in the guardianship statute. 00:22:39.930 --> 00:22:51.610 And we took the definition, it it would sound very similar to what Jonathan probably speaks in his sleep about the definition, about the official supported decision-making definition. 00:22:51.769 --> 00:22:56.170 We adapted it very similarly to the work he and others had

already been doing. 00:22:56.330 --> 00:23:15.289 In Minnesota, we legislated it to say that it is assistance from one or more persons of an individual's choosing in understanding the nature and consequences of potential personal and financial decisions, which enables the individual to make the decision and when consistent with their wishes, in communicating a decision. 00:23:15.529 --> 00:23:25.930 So we just took that simple, like Jonathan said earlier, it's like somebody getting whatever help they need from whoever they trust so they can understand their situation and make a decision. 00:23:26.090 --> 00:23:28.330 So we put that definition in the statute. 00:23:28.490 --> 00:23:36.970 And the other thing we did was we clarified the criteria of who can get a guardian in Minnesota or conservator of a person in other states. 00:23:37.049 --> 00:23:46.890 And in our state, what we said was that the person needed to be incapacitated, but we're not tying an incapacity to a disability. 00:23:47.130 --> 00:24:14.090 We're tying in Minnesota incapacity means a person has a condition that prevents them from being able to understand or make a decision, but also that they can't get their decision made in any other way, even if we employ technological assistance, supported decision making, or a number of other tools, including healthcare directive, community and residential services, um, et cetera. 00:24:14.330 --> 00:24:17.130 So okay, so I'm gonna, I'm confused. 00:24:17.370 --> 00:24:18.090 Okay, sorry. 00:24:18.250 --> 00:24:18.970 You know what I need? 00:24:19.049 --> 00:24:19.850 I need a story. 00:24:20.009 --> 00:24:24.970 I need an example or a story because right now I I'm I'm not a legislator. 00:24:25.210 --> 00:24:34.569 So I I don't understand what the difference is between guardianship or share, I guess that's that's shared decision making. 00:24:34.650 --> 00:24:35.049 I don't know. 00:24:35.210 --> 00:24:39.370 What's the difference between a guardianship and supported decision making? 00:24:39.690 --> 00:24:40.970 Can you use a person? 00:24:41.529 --> 00:24:44.170 And not a real, it doesn't have to be a real person, but just explaining. 00:24:44.490 --> 00:24:55.210 I could actually give a story because I had not heard of supported decision making and it was after 2020, or right, no, it was actually right before 2020. 00:24:55.289 --> 00:25:06.090 So maybe I didn't hear about it because it wasn't um wasn't in the law yet, but I think it sounds like it was in practice, and so it's a good thing you put it in the law because no one told us about it. 00:25:06.410 --> 00:25:19.930 Jim was having lots of troubles, our son, and then uh he had actually um done things like jump off a building and broke his back or you know, caused an accident with people in the car. 00:25:20.090 --> 00:25:25.529 So he needed uh some help and he was not uh all that willing to get it. 00:25:25.610 --> 00:25:30.809 And so everyone in the mental health community said, Mindy, get guardianship. 00:25:30.970 --> 00:25:32.490 You need to get guardianship. 00:25:32.650 --> 00:25:35.930 And no one said anything about the supportive decision making. 00:25:36.090 --> 00:25:39.529 Jim is actually very functional, he's very bright. 00:25:39.769 --> 00:25:45.450 I think just supportive decision making is perfect for him, but we were sent to guardianship. 00:25:45.690 --> 00:26:00.730 And then uh by the time the months went by, when you get to the court hearing, we never had a hearing because they decided that he didn't qualify uh because he was doing too well by then, he had gotten sober and so forth. 00:26:00.970 --> 00:26:04.330 Um, but no one told us about supportive decision making. 00:26:04.410 --> 00:26:13.289 But we instead of getting guardianship, we did get an updated advanced directive and medical power of attorney. 00:26:13.690 --> 00:26:23.930 If people had offered those things in the first place, we might have gone straight there or helped us with supportive decision making or helped Jim with it. 00:26:24.090 --> 00:26:29.370 But we weren't offered those tools, we were just offered the one note, guardianship. 00:26:29.529 --> 00:26:36.650 So there's my story of why I think it's really important that front and center, this is now part of the law. 00:26:36.809 --> 00:26:48.809 So, people, if we were in that same situation just a couple years later, after you passed this law, we would have been offered all these things and not told to go directly to guardianship. 00:26:49.130 --> 00:26:50.170 I just don't really understand the difference. 00:26:50.569 --> 00:26:50.730 Sure. 00:26:51.130 --> 00:26:51.850 Maybe I'm thick. 00:26:52.090 --> 00:26:53.450 I don't really understand the difference. 00:26:53.690 --> 00:26:54.890 Randy, I can help you out with that. 00:26:55.049 --> 00:26:55.529 Okay, thank you. 00:26:55.850 --> 00:27:00.970 And I can break this down really simply, and this is with no value judgment about what's better, by the way. 00:27:01.130 --> 00:27:01.450 Okay. 00:27:01.690 --> 00:27:05.049 In guardianship, a judge decides. 00:27:05.529 --> 00:27:12.809 You go to court, and the court decides that I'm not able to make some or all decisions in my life. 00:27:12.970 --> 00:27:23.130 What the judge does is the judge takes away from me some or all of my right to make decisions and gives that right to someone else. 00:27:23.210 --> 00:27:24.250 Let's say Anita. 00:27:24.730 --> 00:27:33.370 In that situation, Anita has the legal authority, the legal power to make decisions in my place. 00:27:33.610 --> 00:27:40.410 There's all kinds of questions about how she's supposed to do it, but at the end of the day, Anita makes the decision for me. 00:27:40.569 --> 00:27:40.890 Okay. 00:27:41.289 --> 00:27:41.450 Okay. 00:27:41.850 --> 00:27:44.090 Supported decision making. 00:27:44.650 --> 00:27:49.690 I choose someone or more people to work with me. 00:27:49.850 --> 00:27:51.049 I may choose Anita.

00:27:51.210 --> 00:28:02.730 I may choose you and Mindy and Miriam to help me out, to give me information when I need it, to talk things out, to give me information that they have that I don't. 00:28:02.890 --> 00:28:04.890 I have a buddy who knows about cars. 00:28:05.049 --> 00:28:06.809 I have a car issue, I go to him. 00:28:07.049 --> 00:28:09.370 My sister is a superintendent of schools. 00:28:09.610 --> 00:28:12.809 One of my sons is having trouble in school, I go to her. 00:28:13.130 --> 00:28:21.289 I choose people to help me understand so I make a decision based on that information. 00:28:21.529 --> 00:28:26.730 In supported decision making, I make my own decision with your help. 00:28:26.970 --> 00:28:30.890 In guardianship, you make the decision for me. 00:28:31.130 --> 00:28:35.370 The difference is who's the decider and how the decision is made. 00:28:35.769 --> 00:28:44.970 And even if the guardian, if I'm Jonathan's guardian and I say, Oh, Jonathan, you can handle the, I'll stand back and you make the decisions, that's wonderful. 00:28:45.049 --> 00:28:52.330 And that's employing the principles of supported decision making, but I still have the power over him. 00:28:53.130 --> 00:29:09.690 So in its truest sense, you don't use pure supported decision making in guardianship, but you can apply those principles of helping a person and and and the person making maybe decisions outside of the authority of the guardianship. 00:29:09.930 --> 00:29:11.049 We're going to help them. 00:29:11.289 --> 00:29:16.330 So it's it's kind of two separate things, but but definitely overlap. 00:29:16.730 --> 00:29:16.890 Right. 00:29:17.049 --> 00:29:17.450 And I think that's a good question. 00:29:20.090 --> 00:29:24.809 But before she gets that in there, Jonathan, could you just finish up with the rest of my question? 00:29:24.890 --> 00:29:26.809 Is that what you're working on in Connecticut? 00:29:27.130 --> 00:29:33.210 Um it's I'm working on it in more than just Connecticut, but um there are different laws in different states. 00:29:33.370 --> 00:29:44.569 I can say this because I am still bleary-eyed as I am finishing up an article that is summarizing every state that has a supported decision-making law for publication this fall. 00:29:44.730 --> 00:29:50.250 Um, it is there are 41 states in the District of Columbia right now have passed laws. 00:29:50.410 --> 00:29:54.730 When I was involved in Jenny Hatch's case in 2013, there were zero. 00:29:54.890 --> 00:30:02.650 We have gone from zero to 41 in just 13 years, but the laws take all shapes and sizes. 00:30:02.970 --> 00:30:08.250 Some of them um authorize supported decision making in specific situations. 00:30:08.569 --> 00:30:17.610 In organ donorship, for example, in Wyoming, they require they talk about using supported decision making and whether or not to decide to donate an organ. 00:30:17.930 --> 00:30:20.330 Some talk about it in special education. 00:30:20.569 --> 00:30:28.170 Some

laws require courts to consider supported decision making before putting someone in a guardianship. 00:30:28.330 --> 00:30:33.610 Uh, leaping to mind, Missouri specifically says that, as does Virginia. 00:30:33.850 --> 00:30:48.809 Other laws authorize creation of what's called a supported decision-making agreement, where I'm essentially putting in writing, these are the decisions I want help making, these are the people I want to help me, and this is how I want to be helped. 00:30:48.970 --> 00:30:53.049 Some states have some mixture of all three or all three. 00:30:53.289 --> 00:31:00.569 So in Connecticut, I can tell you we're working on getting supported decision-making agreements recognized in law. 00:31:00.730 --> 00:31:08.410 Um, I know that in in Minnesota, you guys look at it also from an SDMA standpoint, and I believe as a guardianship alternative, don't you? 00:31:08.809 --> 00:31:16.809 Yes, it's definitely listed as an alternative, and we're required in Minnesota to try it or be really prepared to explain why you didn't before petitioning. 00:31:16.890 --> 00:31:24.490 But we do not require, and we are very deliberate in our state about we do not require anybody to formalize it and put it in writing. 00:31:24.650 --> 00:31:25.690 We don't have to have a form. 00:31:25.769 --> 00:31:31.930 We have a suggested form because people like forms and sometimes doctors or other professionals who aren't as familiar with the concept. 00:31:32.090 --> 00:31:32.890 We all like paper. 00:31:32.970 --> 00:31:35.610 We professionals like our paper and our documents and our forms. 00:31:35.690 --> 00:31:45.610 So we've developed a suggested form, and there's some fantastic forms also on um available on many websites, and we'll get it to you in the show notes if we haven't already that people can definitely use. 00:31:45.850 --> 00:31:49.529 Well, you can say it, may as well say it now in case somebody's listening with a pen. 00:31:49.610 --> 00:31:51.850 What what where would they get forms like this? 00:31:52.170 --> 00:31:57.049 So I often send people to um supporteddecision making.org. 00:31:57.370 --> 00:31:57.690 Okay. 00:31:58.170 --> 00:32:01.210 Also qualitytrust.org. 00:32:01.690 --> 00:32:02.730 Is that right, Jonathan? 00:32:02.809 --> 00:32:03.769 Are they still up and running? 00:32:04.090 --> 00:32:07.850 I'm smiling because I was the legal director of qualitytrust.org. 00:32:07.930 --> 00:32:11.049 And I am the project director of supported decision making. 00:32:12.569 --> 00:32:13.930 Our roads lead back to Jonathan's. 00:32:14.170 --> 00:32:14.970 Thank you for the plugs. 00:32:15.289 --> 00:32:21.610 Um, both of them have examples, but really there are good supported decision-making examples out there. 00:32:21.769 --> 00:32:25.610 And I want to give kudos to Anita for saying something that's really important. 00:32:25.930 --> 00:32:29.529 And it goes like this: I use supported decision making every day. 00:32:29.690 --> 00:32:32.250 Again, you all helped me on my wardrobe today. 00:32:32.569 --> 00:32:36.970 I don't have a written form that says I have to do it. 00:32:37.130 --> 00:32:39.130 Neither I would guess do you. 00:32:39.289 --> 00:32:41.850 So SDM is something we just do. 00:32:42.330 --> 00:32:48.650 Some states actually require it be in writing, others recognize both formal and informal. 00:32:48.809 --> 00:32:53.610 Really, again, Mindy, to your question, 41 states, 41 different laws. 00:32:54.090 --> 00:32:54.490 Great. 00:32:54.809 --> 00:32:56.170 Mimi, you had a question. 00:32:56.490 --> 00:33:10.730 Well, I'm just a little bit confused because I I understand what you're talking about in terms of supported decision making, being basically what we all do, which is talking to the experts and talking to people who know what they're doing. 00:33:11.049 --> 00:33:25.130 But in this respect, what I'm gathering is what you're talking about goes beyond people with just diseases like schizophrenia, but people with all kinds of different disabilities and situations, right? 00:33:25.289 --> 00:33:25.370 Yes. 00:33:26.410 --> 00:33:26.730 Okay. 00:33:26.970 --> 00:33:43.130 Because my question is, is there, you know, if there's some sort of agreement or legal, legally binding um deal that says that you have to have supported decision making, but there's nothing that says that you have to listen to what they tell you, correct? 00:33:43.610 --> 00:33:44.890 You get to make the decision. 00:33:45.210 --> 00:33:47.610 You are the final decision maker, and that is the point. 00:33:48.170 --> 00:34:01.930 So I just wonder what possible good this is going to do me when my son's in fluorid psychosis and thinks he's, you know, from outer space, and I'm trying to explain to him about how to set up an ATM card. 00:34:02.569 --> 00:34:02.970 100%. 00:34:03.610 --> 00:34:04.250 You know what I'm saying. 00:34:04.890 --> 00:34:06.009 Yeah, you are absolutely right. 00:34:06.170 --> 00:34:10.650 It is not going to work in every situation for every decision for every person. 00:34:11.049 --> 00:34:15.690 And it works a whole lot more with a whole lot more people than we might think it is. 00:34:15.849 --> 00:34:21.210 And even someone I I've been listening to your podcast um ever since Mindy first contacted me. 00:34:21.289 --> 00:34:26.009 So I started at the beginning and I've listened to several seasons, and now I'm listening from season six going backwards. 00:34:26.090 --> 00:34:28.569 So I'm I feel like I'm you're all my friends now. 00:34:28.809 --> 00:34:45.609 Um and I and I'm perked up because Randy, you recently, at least to me it was recently from when I was listening, you had a conversation with Ben about if you buy those$250 sneakers, that's gonna push your goal of getting your V your car, I think it was, further out. 00:34:46.250 --> 00:34:49.529 Understand the you can do that, but here's the consequence. 00:34:49.689 --> 00:34:50.809 Do you really want to

do that? 00:34:51.129 --> 00:34:58.169 Mimi, your son Nick was really, really, really sick a few years ago with pneumonia and he wouldn't go to the hospital. 00:34:58.889 --> 00:35:02.409 And you didn't seek a court intervention to force him. 00:35:03.129 --> 00:35:06.169 Guardianship wouldn't have worked there anyway, but you didn't seek an intervention. 00:35:06.329 --> 00:35:08.569 What you did is you said, Why don't you want to go? 00:35:08.969 --> 00:35:13.449 And he said, Because he told you or express somehow because it's really scary. 00:35:13.529 --> 00:35:18.169 It's gonna feel a lot, it's the same as all my other hospitalizations for psychiatric uh crises. 00:35:18.409 --> 00:35:20.809 And you explained to him this is a medical thing, and he agreed to go. 00:35:20.969 --> 00:35:24.169 I'm I'm making some inferences from what you shared on the podcast. 00:35:24.569 --> 00:35:31.129 Um, Mindy and Randy, you've both used it when you've set boundaries and consequences with your kids. 00:35:31.289 --> 00:35:34.250 If you're using, you can't come to the house. 00:35:34.409 --> 00:35:37.369 So you can use, but here's the consequence. 00:35:37.529 --> 00:35:41.210 And sometimes that has worked to help them stop, and sometimes it hasn't. 00:35:41.289 --> 00:35:52.569 But those are just tiny daily examples of that you've used, even if it isn't useful in some of the bigger, more serious decisions, but it worked in those situations. 00:35:52.730 --> 00:35:55.689 So it's not gonna work all the time for sure, or with every person. 00:35:56.089 --> 00:36:20.250 And my feeling what I'm getting from you guys is that since we are talking about this encompassing a larger population than just people with the psychosis disorders who are very sick, people who have intellectual disabilities and things like that that aren't necessarily adverse to getting advice or being but want to run their own lives, correct? 00:36:20.649 --> 00:36:24.409 It gives it a structure for them to make their own decisions. 00:36:24.889 --> 00:36:25.129 Yep. 00:36:25.369 --> 00:36:25.769 Goodbye. 00:36:26.169 --> 00:36:26.329 Yep. 00:36:26.569 --> 00:36:35.529 Um, and it's worth saying that supported decision making is often looked at as having been pioneered by people with intellectual and developmental disabilities. 00:36:35.609 --> 00:36:43.369 And I stress that by people, not for, but by the people like Jenny Hatch who say, I want to be involved in this. 00:36:43.609 --> 00:36:50.730 But to Anita's point and to yours, ma'am, I don't know if supported decision making would help your son. 00:36:50.969 --> 00:36:53.369 Um, I don't know your son, I don't know you. 00:36:53.529 --> 00:36:59.609 I'd love to get to know you and see if I could help you, but it's not going to work in every situation. 00:36:59.689 --> 00:37:03.609 And I would never say that every single person has to try it. 00:37:03.929 --> 00:37:11.769 I would say that we should do whatever we can to help people be as

independent and autonomous as possible. 00:37:12.089 --> 00:37:20.969 Because if for no other reason there's tons of studies that show the more choices we make, the more control we have over our lives, the better our lives are. 00:37:21.210 --> 00:37:24.250 But in no way would I say it's something that will work. 00:37:24.329 --> 00:37:25.369 It's not magic. 00:37:25.689 --> 00:37:26.569 Yeah, I get that. 00:37:26.649 --> 00:37:41.129 You know, you you have to understand from our point of view, the three moms here, you know, we walk this line of constantly between wanting to see our sons improve and be more independent, and then, oh my God, if they're more independent, what are they going to do next? 00:37:41.369 --> 00:37:44.329 So then you want to pull them back over that line and pull them back. 00:37:44.489 --> 00:37:56.730 And so it's it's a horrible place as a mother because you want to grant them this freedom and this autonomy, and yet at the same time, your life and in a sense their life is a lot better when you just make the decisions. 00:37:56.889 --> 00:38:04.809 So you really have to kind of rise above that, that inclination as a parent to um allow them this. 00:38:04.889 --> 00:38:10.329 But I see that the autonomy and the ability to manage their own lives is so important. 00:38:10.649 --> 00:38:19.609 Of course, I would say that my partner has two children with doctorate degrees, and she says I would be their guardian if I could, because their lives are better when I make the decisions for them. 00:38:20.009 --> 00:38:22.329 Well, everybody would be better if they listen to me. 00:38:23.609 --> 00:38:24.809 Part of being a parent. 00:38:24.969 --> 00:38:28.409 Well, by the way, but I'm putting that on my my business cards right now. 00:38:28.489 --> 00:38:31.449 Uh, everyone's lives would be better if they would just listen to me. 00:38:31.609 --> 00:38:46.329 But uh I I would say, ma'am, that you're right, as parents, and again, I speak as a parent, our job is to protect our children and to help them be as independent as possible and somehow thread that needle. 00:38:46.569 --> 00:38:51.049 And it is not for me to tell you how you should thread that needle. 00:38:51.289 --> 00:38:54.809 If I can give you some information that'll help you do it, I'd love to. 00:38:55.129 --> 00:38:58.809 I my son is right now doing really well. 00:38:58.969 --> 00:39:10.489 And the I'm I'm happy in retrospect that I didn't get the guardianship because I don't think it would have worked very well with him and our relationship. 00:39:10.730 --> 00:39:18.809 And uh he might have gotten somebody else appointed and not me, and then I'd have one more layer to try to communicate with. 00:39:19.129 --> 00:39:25.129 But had it been me, I don't know that we would have the relationship we have right now when he's doing really well. 00:39:25.289 --> 00:39:29.929 And he wants me to be places when he's making decisions. 00:39:30.089 --> 00:39:35.449 He he has a meeting with his catty waiver manager and he needs to pick what he wants. 00:39:35.609 --> 00:39:41.210 And sometimes he kind of panics when he has a whole bunch of choices and can't make choices. 00:39:41.369 --> 00:39:47.449 And so he likes it if I am there, and I'm trying to transfer over as I'm getting older. 00:39:47.529 --> 00:39:53.849 So he likes it when other people are there too, like he uh he has other people now too. 00:39:54.009 --> 00:40:01.369 Um, but I think if if we'd had guardianship, given the person he is and the person I am, I don't know that it would work. 00:40:01.529 --> 00:40:08.809 Randy's calmer maybe than I am, but I I think we might have destroyed, or she doesn't think she is if anybody's not watching on YouTube. 00:40:09.210 --> 00:40:12.329 Well, I I I think here here's my take on this. 00:40:12.649 --> 00:40:15.769 I love this as a framework. 00:40:16.809 --> 00:40:19.289 I love it as an option. 00:40:19.689 --> 00:40:28.730 And I I believe, uh, I love hearing the work you're doing to make every single state aware of this as an option. 00:40:29.609 --> 00:41:00.489 Because I believe that for those of us whose loved ones aren't doing that well, who could be a danger to themselves if we don't, you know, and let's be clear if you're if you're listening and you're brand new to loving someone with a serious mental illness, guardianship, make no mistake, it doesn't give you the right to put them in the hospital, it doesn't give you the right to make them take medication, it's not it, that doesn't exist anywhere. 00:41:00.730 --> 00:41:08.730 So don't think that, oh good, now that I'm your guardian, I'm gonna force you into the hospital, because there are times I'd love to do that and I can't do that. 00:41:08.889 --> 00:41:10.169 That's that's not what it is. 00:41:10.329 --> 00:41:15.689 What it is is you know, officially helping them manage their money. 00:41:15.929 --> 00:41:35.289 Some if you're guardian or um conservator of a state, and having the right, one time, you know, if you need it, to um not let them sign, co-sign a car loan with a friend because you they think it's a character reference. 00:41:35.449 --> 00:41:37.849 Like it gives you some legal rights. 00:41:38.489 --> 00:41:43.769 However, it you don't have to use them all, you know. 00:41:43.929 --> 00:41:50.649 I mean, when my son was doing so well on clauseral and he was working full-time and he was making bad financial decisions, but you know what? 00:41:50.809 --> 00:42:00.889 He was paying his bills and then buying, you know, six tents for camping, and he never goes camping, but it paid his bills, so I just stayed out of it. 00:42:01.129 --> 00:42:06.009 So we did supported decision making within the guardianship. 00:42:06.089 --> 00:42:14.489 And I I I hope that our listeners will um will see this as a framework to work toward when things are going well. 00:42:15.049 --> 00:42:28.809 Is that a fair way to frame it for people, you know, whose, you

know, um I hope and hope someday my son goes, you know what, mom, I think I do have schizophrenia and I might need a little help. 00:42:28.969 --> 00:42:32.329 Let's work on a way that we, you know, you can support my decision making. 00:42:32.489 --> 00:42:33.849 I'd be all about it. 00:42:34.009 --> 00:42:36.169 You know, universaling, absolutely. 00:42:36.329 --> 00:42:36.649 Yeah. 00:42:36.889 --> 00:42:38.250 And in the meantime, yeah. 00:42:38.489 --> 00:42:38.730 Yeah. 00:42:38.889 --> 00:42:39.689 So I don't know. 00:42:39.849 --> 00:42:41.289 What do you think of that framework? 00:42:41.369 --> 00:42:48.009 I mean, supported decision making is a legal thing, but it's also a framework you can apply even to a guardianship, right? 00:42:48.649 --> 00:42:51.449 I talk about supported decision making as a vehicle. 00:42:51.529 --> 00:42:51.769 Okay. 00:42:52.169 --> 00:42:52.969 Vehicle, okay. 00:42:53.369 --> 00:42:58.409 The the goal, the end point, the destination is self-determination. 00:42:58.649 --> 00:43:01.689 Uh, I'm not a big buzzword guy, but I love that one. 00:43:01.929 --> 00:43:10.169 Self-determination means having control over your life, being the person who has control, who calls the shots. 00:43:10.329 --> 00:43:13.689 People who are self-determined do things instead of having things done to them. 00:43:14.009 --> 00:43:32.250 Because what we know, and we have 40 years of studies on this, for people with disabilities, including people with serious mental illness, those who are more self-determined, who show the ability, the desire, the acuity to make their own decisions, have demonstrably better lives. 00:43:32.329 --> 00:43:35.449 They're more likely to be educated, employed, and live independently. 00:43:35.689 --> 00:43:45.849 So if we take as given that that should be a goal, then what we should be working on is finding ways to empower people to be as self-determined as they can. 00:43:46.250 --> 00:44:04.409 And if we can use your framework, Randy, to empower people to make decisions, to make decisions for themselves when they can, how they can, then that is the vehicle that moves us toward not self-determination, but quality of life. 00:44:05.289 --> 00:44:10.089 I agree, I totally agree in theory, and I'm just gonna bring up the elephant in the room. 00:44:10.329 --> 00:44:16.089 I don't believe my son should have the right to decide to live in a box on the street when it's 30 degrees out. 00:44:17.129 --> 00:44:17.849 And I'm not sure. 00:44:18.009 --> 00:44:18.809 So that's not a decision. 00:44:19.210 --> 00:44:20.569 I'm not going to argue with you. 00:44:20.809 --> 00:44:21.849 I didn't think you would. 00:44:22.489 --> 00:44:27.210 So I don't want the listeners to misinterpret, you know, who should. 00:44:27.769 --> 00:44:31.289 Who that this is, you know, one size fits all for everybody. 00:44:31.609 --> 00:44:34.409 Our my son has anastignosia so bad. 00:44:34.569 --> 00:44:42.969 Doesn't think he's sick, doesn't think he has schizophrenia, doesn't think that, you know, he would like to be on drugs all the time right now and living homeless. 00:44:43.129 --> 00:44:45.849 That's what he thinks he wants until he gets stable. 00:44:45.929 --> 00:44:47.609 And then he's like, what was I thinking? 00:44:47.849 --> 00:44:52.809 So I just don't want the listeners, I don't want to get all these letters of like, are you crazy? 00:44:52.969 --> 00:44:57.449 Like this is a fabulous option for when people are doing well. 00:44:57.609 --> 00:45:01.849 And that's why we want to bring it to our listeners so they're aware that this is a framework. 00:45:02.169 --> 00:45:14.969 For what it's worth, there are versions of, or I would say, um vehicles for supported decision making that are tailored to people with serious mental illness. 00:45:15.129 --> 00:45:23.129 I led a study out of the University of South Southern California on supported decision making for people with serious mental illness. 00:45:23.289 --> 00:45:36.409 And we found across the board that people of, again, all of whom had a diagnosis of SMI were able to and enjoyed and successfully used supported decision making in a number of circumstances. 00:45:36.569 --> 00:45:57.529 Again, not everyone is made for this, not everyone wants this, but there are things called psychiatric advanced directives that are recognized in many states, including Connecticut and Minnesota, where a person with mental illness can put down certain preferences and decisions when they're well that they want to occur when they're not. 00:45:57.849 --> 00:46:13.929 So a psychiatric advanced directive can be activated when a person's mental illness is in a seriously psychoactive state or when they're in psychosis, and decisions can be made along the lines that the person wants pursuant to when they were well. 00:46:14.089 --> 00:46:16.089 Again, does it work every time? 00:46:16.250 --> 00:46:16.569 No. 00:46:16.730 --> 00:46:20.089 For some people, they're not going to be able to. 00:46:20.169 --> 00:46:28.169 And we have an obligation as people, as parents, as citizens, to provide support to people who need it. 00:46:28.250 --> 00:46:33.769 And guardianship and conservatorship must always be options for people who need it. 00:46:34.250 --> 00:46:39.049 And we have an advanced psychiatric directive for Jim, and it works really well. 00:46:39.210 --> 00:46:52.089 And you know, one I've been thinking one of the reasons that I think uh guardianship was never proposed for Jim all along is because we do have uh civil commitment and AOT here in Minnesota. 00:46:52.329 --> 00:47:08.730 So when uh you mentioned Randy, um you can't make Jim or or Ben take his meds or not live in a box on the street, um, that that is something that actually is addressed by the can be addressed by the courts in other states. 00:47:08.969 --> 00:47:13.529 And that is such a relief because then you have someone else enforcing it. 00:47:13.609 -->

00:47:16.889 And it isn't up to the mother. 00:47:17.289 --> 00:47:37.049 But um, but uh what one thing I would like to hear about Jonathan, the reason you're famous, and we've kind of skirted around it, is this case that uh that is a landmark court decision that you won to get this to be a consideration, an option. 00:47:37.289 --> 00:47:47.210 Could you tell us about you talked a little bit about this young woman who came to your uh came to see you, but what tell us about that decision and what you did? 00:47:47.529 --> 00:47:53.210 First, if y'all are gonna keep calling me famous, I'm going to need to record that and get a transcript. 00:47:54.169 --> 00:47:57.049 Well, we're recording right now, so you've got it. 00:47:57.369 --> 00:47:59.689 Maybe we could isolate the part that says next time. 00:48:03.609 --> 00:48:06.009 I'm perfectly happy to ride your coattails, ma'am. 00:48:06.329 --> 00:48:11.849 So um, so yeah, um, a young woman named Jenny Hatch. 00:48:12.250 --> 00:48:16.409 Um, Jenny is a young woman with Down syndrome. 00:48:16.649 --> 00:48:18.649 Jenny graduated high school. 00:48:18.809 --> 00:48:28.969 Uh, when I met Jenny, um, she had been employed at the same job for five years, not a special or supported job, regular job, making regular wages, paying regular taxes. 00:48:29.210 --> 00:48:34.250 Jenny had her own apartment with a roommate, not a specialized or group home. 00:48:34.489 --> 00:48:36.169 Jenny had a church she went to. 00:48:36.329 --> 00:48:37.609 She was a volunteer. 00:48:37.769 --> 00:48:40.169 Uh, Jenny had a life, just like everyone else. 00:48:40.809 --> 00:48:50.489 Um, and then one day she got hit by a car, and there was an accident that injured her back, no back, no cognitive impact on her. 00:48:50.730 --> 00:48:52.489 She had to have surgery. 00:48:52.889 --> 00:49:04.250 And um, short version, uh, as she came out of the hospital shortly thereafter, she found herself on the receiving end of a petition for guardianship filed by her mother and her stepfather. 00:49:04.489 --> 00:49:19.049 So that when I met Jenny, um, which was February of 2013, she had an August of 2012 walked into a courtroom in Newport News, Virginia, a little tiny courtroom, um, with all her rights, all the rights that you have. 00:49:19.369 --> 00:49:21.689 Three hours later, she walked out with nothing. 00:49:21.849 --> 00:49:31.769 She was put into a temporary guardianship to where she was required to live in a group home, even though she wanted to live with friends who wanted her to live with them. 00:49:32.089 --> 00:49:38.009 She was required to work at the group home, even though she wanted to go back to her job and was welcome to do so. 00:49:38.250 --> 00:49:43.049 Her cell phone was taken away, her Facebook password was changed, her laptop was taken away. 00:49:43.210 --> 00:49:48.489 If you wanted to see or speak with Jenny, you had to fill out a permission slip. 00:49:48.889 --> 00:49:50.409 Hand to God, you can go look at it. 00:49:50.569 --> 00:49:52.569 Jenny hatchjusticeproject.org. 00:49:52.730 --> 00:49:55.049 You can see the permission slip you had to fill out. 00:49:55.129 --> 00:49:59.849 And you weren't allowed to talk to her about her guardianship because they said it upset her. 00:50:00.089 --> 00:50:01.609 You know why it upset her? 00:50:01.929 --> 00:50:04.009 She didn't want to be in guardianship. 00:50:04.089 --> 00:50:08.329 She wanted to live with her friends and go to her job and go to her church, and she wasn't allowed to. 00:50:08.809 --> 00:50:16.730 So I had something of a reputation as the person you went to if you wanted to file a lawsuit and you were a person with disabilities. 00:50:16.889 --> 00:50:18.489 Um, I got trapped down. 00:50:18.649 --> 00:50:22.730 I went and visited Jenny, and like I said, I had this light bulb go off. 00:50:22.809 --> 00:50:26.569 And I said, Oh my God, this person doesn't need this. 00:50:27.289 --> 00:50:29.609 So I represented her. 00:50:29.929 --> 00:50:38.809 Um, after I convinced the court to let me speak with her, because remember, the permission slip said you weren't allowed to talk to her about the guardianship. 00:50:38.969 --> 00:50:43.289 We actually had to argue about whether she had the right to speak with me. 00:50:43.529 --> 00:50:46.649 To which point I said, Imagine if she was an axe murderer. 00:50:46.889 --> 00:50:54.409 If she was an axe murderer, she'd have the right to talk to a lawyer, but a person with disabilities in that guardianship didn't have the same rights as an axe murderer. 00:50:54.889 --> 00:50:56.969 So we litigated for a year. 00:50:57.129 --> 00:51:01.849 And what we showed was that Jenny had been using supported decision making her whole life. 00:51:02.089 --> 00:51:04.489 Didn't call it that because no one calls it that. 00:51:04.730 --> 00:51:10.730 But we showed that she signed uh forms and her case manager said they would explain it to her and she'd understand it. 00:51:10.889 --> 00:51:17.849 We showed that she consented to surgery on her back because the doctor explained it to her and her family explained it to her. 00:51:18.009 --> 00:51:24.730 We showed all of the times that she was able to make her own decisions when she got support. 00:51:25.449 --> 00:51:37.210 And uh after a very long time, a lot of court appearances, uh, the judge, the first trial judge in the United States, said that Jenny had the right to use supported decision making. 00:51:37.369 --> 00:51:41.289 And it has been 13 years, 13 years as of August. 00:51:41.369 --> 00:51:46.089 She has been living independently, working where she wants, doing what she wants to do, writing. 00:51:46.250 --> 00:51:48.329 She's a frequent speaker. 00:51:48.569 --> 00:51:49.929 Um, Jenny has a life. 00:51:50.169 --> 00:51:55.049 Jenny has the life that she wanted, just like you and me, the life she had. 00:51:55.449 --> 00:51:57.609 Because Jenny didn't need a guardian. 00:51:57.769 --> 00:51:58.809

Other people do. 00:51:59.129 --> 00:52:02.730 Jenny was able to use supported decision making and does. 00:52:02.969 --> 00:52:05.049 She is the perfect example of that. 00:52:05.129 --> 00:52:08.329 I call her the patron saint of supportive decision making. 00:52:08.569 --> 00:52:11.449 So it it's kind of something to aim for as a middle ground. 00:52:11.529 --> 00:52:13.369 We we only have a couple of minutes left. 00:52:13.449 --> 00:52:21.049 So I want to make sure that I I give you each a chance to say anything that we didn't get to ask you about yet. 00:52:21.210 --> 00:52:32.969 Um, and I would like uh Anita to talk about the um Center for Excellence in Support of Decision Making in Minnesota, because I understand we are the only state that has anything like that. 00:52:33.129 --> 00:52:36.250 So I think Anita should first get a chance to talk about that. 00:52:36.569 --> 00:52:38.250 Well, that's that that's part of that question. 00:52:38.329 --> 00:52:40.569 So that's the first. 00:52:40.889 --> 00:52:41.449 So thank you. 00:52:41.609 --> 00:52:52.489 So our the Center for Excellence in Supportive Decision Making was was um developed or was was um launched in response to a federal request for proposal for a grant. 00:52:52.569 --> 00:53:00.089 And so several of us who um in Minnesota, again, we were hearing about it, we were excited about it, we were acknowledging the sea changes. 00:53:00.169 --> 00:53:01.689 And so we applied for this grant. 00:53:01.849 --> 00:53:11.210 And if we had been that sure we would get it, I don't think we would have invented a name as such a mouthful of the Center for Excellence in support of decision making as we did. 00:53:11.289 --> 00:53:13.369 But there we go, that's what we said we would call it. 00:53:13.529 --> 00:53:17.529 And so with that, and then also demonstrated the changing tides nationally, right? 00:53:17.609 --> 00:53:24.969 So this was back in 2016 when we were 10 years ago when we were awarded the grant, speaking to um even the entities there. 00:53:25.049 --> 00:53:30.649 This was an elder justice grant that was seeking one of the focus areas was avoiding abuse and guardianship. 00:53:30.730 --> 00:53:36.489 And so we proposed let's avoid abuse and guardianship by avoiding guardianship more often when we can. 00:53:36.730 --> 00:53:47.289 And so we're awarded this grant, and that enabled us then to establish um direct social work with directly working with individuals to navigate through these systems. 00:53:47.529 --> 00:53:59.849 We um the most famous part of our work is our guardianship information line, which is a misnomer, but supported decision-making information line also is too much of a muscle, and no one knew back then what it was. 00:54:00.009 --> 00:54:01.529 And people want to know about guardianship. 00:54:01.609 --> 00:54:02.889 So it's sort of our hook. 00:54:03.049 --> 00:54:13.529 Once they call, whether it's an individual subject to or at risk of guardianship, a family member, a community, a professional, we'll talk with them about is guardianship necessary? 00:54:13.689 --> 00:54:15.369 Will guardianship solve the problem? 00:54:15.529 --> 00:54:18.169 Will it solve some problems and make others worse? 00:54:18.409 --> 00:54:20.089 What about supportive decision making? 00:54:20.169 --> 00:54:23.849 What about psychiatric advance directives, healthcare directives, powers of attorney, all the things. 00:54:24.089 --> 00:54:29.210 And this were Minnesota, or could someone call you and just say, can you talk me through this? 00:54:29.689 --> 00:54:32.250 So, right, we'll answer and help people as best we can. 00:54:32.329 --> 00:54:41.369 But right now it's for either our callers are about people who live in Minnesota, or sometimes it's a family who lives in Minnesota, but has a family member in California. 00:54:41.449 --> 00:54:48.649 Um, and so we'll do our best to talk through on principles, but of course, we have two social workers who are info line people. 00:54:48.730 --> 00:54:54.889 So we can't know the state, all the states and all the laws, but we will definitely frame it from these concepts. 00:54:54.969 --> 00:54:58.730 And that's part of like what I want to make sure we hit before we leave. 00:54:58.809 --> 00:55:05.049 Um, for Minnesota, for any of the people we talk to, you don't have to, it's fantastic that 41 states have it. 00:55:05.289 --> 00:55:09.289 We don't have to have it in law to do it because it's that approach. 00:55:09.369 --> 00:55:10.809 And it's already built in. 00:55:10.889 --> 00:55:16.489 And Jonathan's nodding his head and maybe silently rolling his eyes because all the things I'm saying, I've heard Jonathan say. 00:55:16.569 --> 00:55:18.409 So I know we're in agreement with a lot of this. 00:55:18.569 --> 00:55:24.089 It's baked into the Patient Self-Determination Act, the Americans with Disabilities Act. 00:55:24.169 --> 00:55:35.049 Um, the I it's built into federal laws and practices already by saying people get to have the help they need to make it to better understand a decision and make the decision. 00:55:35.849 --> 00:55:36.889 Okay, thank you. 00:55:37.049 --> 00:55:44.089 Uh Jonathan, anything to add to that or anything that you were you say, oh, I hope they ask me about that. 00:55:44.329 --> 00:55:52.809 And I'm I'm curious if there are places that people can go for information that aren't in Minnesota or California. 00:55:52.969 --> 00:55:56.169 Is there a do you have any resources or references? 00:55:56.809 --> 00:55:57.609 Yeah, a couple of them. 00:55:57.689 --> 00:56:02.009 Um, first, Anita mentioned a couple, um, supporteddecisionmaking.org. 00:56:02.089 --> 00:56:06.889 Um, you can get me directly um if you're interested in talking about that. 00:56:07.129 --> 00:56:09.449 I'm at Light Path Advocacy. 00:56:09.529 --> 00:56:14.009 You had said Academy earlier, but lightpathvocacy.com. 00:56:14.329 --> 00:56:16.250 Uh, I'm always happy to talk about

it. 00:56:16.329 --> 00:56:18.250 But you asked if there's anything else I want to say. 00:56:18.409 --> 00:56:20.889 And I want to close the way I opened. 00:56:20.969 --> 00:56:21.609 I'm lucky. 00:56:21.929 --> 00:56:23.049 Lucky for a living. 00:56:23.210 --> 00:56:26.329 I'm lucky today to be on this podcast. 00:56:26.409 --> 00:56:30.089 And man, am I lucky to to work in a country with Anita Raymond? 00:56:30.489 --> 00:56:37.369 Um, because some of us can talk about supported decision making all day, and I'm always happy to. 00:56:37.529 --> 00:56:39.769 Um, Anita Raymond makes it happen. 00:56:40.009 --> 00:56:56.569 The Center for Excellence makes it happen um for people who have questions, for people who have needs, and for the people who work there, who put themselves out there every day getting and doing the hard work. 00:56:56.730 --> 00:57:02.009 Um it makes me just incredibly proud to do what I do. 00:57:02.329 --> 00:57:03.609 I'm loving thank you. 00:57:04.169 --> 00:57:05.210 I I love that. 00:57:05.449 --> 00:57:07.529 I have one final question. 00:57:09.769 --> 00:57:32.329 If there's a listener whose loved one um have schizophrenia and are experiencing anasygnosia, what's the one thing, what's the one action they could take right now to hope to eventually work towards supported decision making? 00:57:32.409 --> 00:57:34.730 What I mean, should they just do the research? 00:57:34.889 --> 00:57:37.849 Is there one action that you could tell this listener? 00:57:38.730 --> 00:57:47.049 Uh I don't want to cop out here, but I work with a lot of people with autism and a lot of people with mental illness, and they both say the same thing. 00:57:47.529 --> 00:57:52.489 If you know one person with mental illness, you know one person with mental illness. 00:57:52.649 --> 00:58:01.289 So I am not going to say there's only one thing that anyone can do, but what I will say is do everything you can to learn as much as you can. 00:58:01.929 --> 00:58:11.529 Um it is I have nothing that I can tell any parent about what it's like to be the parent of someone with schizophrenia. 00:58:11.849 --> 00:58:14.009 Um because I haven't lived that life. 00:58:14.089 --> 00:58:17.369 I haven't walked in your shoes, and I won't tell you how to walk in yours. 00:58:17.609 --> 00:58:25.049 But I will tell you learn everything you can, talk to everyone you can, reach out to me, reach out to Anita. 00:58:25.369 --> 00:58:28.329 Um, maybe we can find some ideas together. 00:58:29.369 --> 00:58:29.929 Love that. 00:58:30.089 --> 00:58:30.489 Thank you. 00:58:30.649 --> 00:58:32.889 Anything to add, Anita, or are you just nodding your head? 00:58:33.210 --> 00:58:34.649 I'm nodding my head with an agreement. 00:58:34.730 --> 00:58:41.609 I I guess I would just add too, as Jonathan's saying, there's there's no one solution, there's no one next step. 00:58:41.929 --> 00:58:47.449 And it really is dependent on that person, that decision, that moment in time. 00:58:47.609 --> 00:59:02.569 And what we know, what we all know about ourselves is if I'm told what I have to do, what's best for me, I might know it, I might not know it, I might not agree, but I'm sure going to resist more than if I feel like it's more of a dance. 00:59:02.730 --> 00:59:04.730 Is here's some things you could do. 00:59:04.969 --> 00:59:12.489 And while we might not be, it may not be in any way safe or appropriate to just let someone make a decision. 00:59:13.609 --> 00:59:14.649 There are decisions. 00:59:15.210 --> 00:59:17.529 I gave some examples earlier, even in your own lives. 00:59:17.689 --> 00:59:27.129 There are some decisions in some circumstances people can make and will happily make if we can help support them and help them understand the situation so they can make the decision. 00:59:27.289 --> 00:59:32.489 Some of them, not all of them, not all the time, not every day, but a whole lot more than we otherwise thought. 00:59:32.889 --> 00:59:33.369 Love it. 00:59:33.449 --> 00:59:35.049 So many shades of gray. 00:59:35.210 --> 00:59:38.569 I don't want to use gray, but that's the cut, you know, in between the black and the white. 00:59:38.649 --> 00:59:43.289 And thank you, Anita and Jonathan, for bringing them to light for us today. 00:59:43.449 --> 00:59:44.009 Thank you. 00:59:44.250 --> 00:59:49.449 Thank you so much for tuning into this episode of Schizophrenia Three Moms in the Trenches. 00:59:49.609 --> 00:59:58.009 You can help out the podcast and help others by sharing the podcast and by subscribing wherever you get your podcasts andor on YouTube. 00:59:58.329 --> 01:00:06.569 And remember, you can reach us at mindygryling.com, randy kay.com, or MiriamHeifenfeldman.com.