Tuesday Tips: Supported Decision Making – An Alternative to Guardianship Webinar

Stella: Good morning, and thank you all so much for joining us today for Kentucky SPIN’s Tuesday Tips. We are going to be talking about supported decisions today. My name is Stella Beard I’m the Assistant Director for Kentucky SPIN. And so we are so happy that you have joined us for our webinar today.

[00:00:18] I want to go over just a few things with you on the right hand side, you will see your dashboard, on that dashboard or a few different things. One is called a question box. So if you have questions throughout the presentation, please feel free to type those questions in there. And I will be facilitating those questions and will let our speaker know when we do have questions and she can answer them. Also. There is a place called handout and we had two handouts in there for you today. One is the PowerPoint that you’re seeing that will be also on your screen. And then there is also another handout that Laura will be talking about. But just in case you don’t have time to download those handouts, this afternoon we will send a follow-up email along with the certificate of completion that we’ll also have those handouts there. So feel free just to focus on the webinar today and we will send those handouts to you following today’s webinar.

[00:01:23] I want to tell you just a little bit about Kentucky SPIN, which is also stands for Special Parent Involvement Network. We are the Parent Training and Information Center, which we call PTI, for the state of Kentucky. We are funded by the U.S. Department of Education. And we have actually been the Parent Training and Information Center since 1988. And that’s, we have been, you know, the Parent Training and Information Center since that time.

[00:01:52] What we do is, I like to say Kentucky SPIN is the best kept secret in the State because we provide free training, information and support for children, families who have all types of disability. So we are not disability specific. We work with families, who have a child with disabilities. We also work with young adults who have disabilities. We say we work birth through 26, but we do go beyond. And we just provide that the support that families need.

[00:02:23] The other cool thing about our agency is all of our staff, consultants are either parents of a child or young adult with a disability. they either have a disability themselves, they’re a sibling who has a brother or a sister with an intellectual developmental disability. So I really love that aspect of our agency, because I think that provides a much needed component that a lot of agencies do not provide.

[00:02:52] We do not act as attorney. So we’re not going to give anyone legal advice. What we do is we’re going to direct them to the correct regulations or law that’s out there, but we’re not going to give them any legal advice. But we do empower families to effectively advocate for their kids. And provide that peer support that help families access that much needed information and resources. And I think that’s really important, especially during these trying times that we’re going through right now with COVID-19, is providing that support that families need and giving them those resources so they’re not having to search all the time, for the answers.

[00:03:34] So I am very, very excited today that we have Laura Butler with us. Laura is the Project Director for the Supported Decision-Making project through the Human Development Institute at the University of Kentucky, or HDI.

[00:03:51] And, I know Laura is going to give us some wonderful information, but just to give you a little personal testimony so to speak. Laura helped my son Clayton get his rights restored. I had been his guardian for five years and we began to work with Laura, through HDI, and also Protection and Advocacy. And, last year Clayton was able, was actually this time last year, Clayton’s rights were restored. And so he has been his own guardian now for a year, and it’s been wonderful and we are using supported decision-making.

[00:04:30] So I was really excited to invite Laura on our Tuesday Tip so that she can give us some of those tips about supported decision-making and maybe answer a few questions that a lot of families might struggle with in making those huge decisions on behalf of our kids. So, Laura, can you hear me?

[00:04:51] Laura: I can hear you. Can you hear me?

[00:04:54] Stella: I sure can. All right. We’re ready for you to get started. Thank you so much for being with us today. We can’t wait.

[00:05:01] Laura: All right. And thanks Stella for that introduction of what our project does, that’s basically what we do. We help people who are looking to use supported decision-making in a variety of ways.

[00:05:17] We’ll talk a little bit about what supported decision-making is, just to make sure everyone’s on the same page. But what our project does is talk is help people get their rights restored if they need it, implement supported decision-making in their lives, and then we do trainings and information sharing like we’re doing today. And our partner in the project is Kentucky Protection and Advocacy, and we are funded by the Commonwealth Council on Developmental Disabilities.

[00:05:46] So like I said, we’ll define what supported decision-making is, give some tips on what it means to use it and what you need to know, and there’s a whole lot more we could talk about, but this is just kind of the basics.

[00:06:00] We’ll share some resources and tools. If we have time, we’ll do a little bit more of some of the supported decision-making and action. Kind of, like Stella just gave their history, we’ll share a couple of more people that we’ve worked with and no matter what, we’ll leave time for questions.

[00:06:18] So, just so everybody’s on the same page, supported decision-making doesn’t really have a dictionary definition. But when you look through different writings about it and talk to people who’ve been doing this for a while, it basically boils down to this. That it’s the use of trusted friends, family members, and professionals to get the help that we need to make our own decisions. This help can be evaluating a situation, weighing pros and cons, exploring options, offering advice and explaining different concepts, documents, things like that, that might be confusing.

[00:07:05] So one of the things that we need to make sure that we’re thinking about when we’re using supported decision-making is that we are using a social model of disability as opposed to a medical model of disability. So what the difference is, and you can see, in this wonderful drawing, I should say all of the, most of the artwork, other than a few of the stock photos are done by my colleague, who’s very talented, Brittany Granville, and so she did this one and most of the other ones you’ll see.

[00:07:38] So the medical model of disability says that the person with the disability has a problem that needs to be fixed, basically that, whatever, you know, issues the person is having it stems from the disability.

[00:07:52] The social model sometimes called social-ecological model says that society has the problem that must be fixed. So an example of that would be a person who uses a wheelchair. You could say, well the fact that they have to use a wheelchair for whatever reason, is the disabling factor. But the social model says that the issue is that there aren’t ramps and doors that open automatically and all these different things that create barriers for the person who needs to use the wheelchair.

[00:08:26] So those barriers can be physical, like the ones we just talked about or they can be attitudinal. So it can be that person uses a wheelchair therefore they aren’t able to do anything. They aren’t capable of managing their own lives or living independently, things like that because they use a wheelchair, when really there’s no reason why that person can’t do all the same things everybody else does except for maybe walk up steps. So, Stella you can go to the next slide.

[00:09:03] So if when I was describing supported decision-making, you thought, well that doesn’t sound that complicated or radical you’re right. Everybody uses supported decision-making in some way, shape or form. You might think, you might ask advice about what you should have for dinner, if your shoes match you’re outfit. You might be talking to another parent and ask about what documents they bring to an IEP meeting or what they do to prepare for a meeting. Or it could be really complicated, and you get a medical diagnosis and you ask someone else for help in explaining that to you. And it could go on and on, it could be legal documents, it could be, you know, getting advice on who a person had to fix the roof, things like that.

[00:09:49] It’s just, it can be small everyday things, or it can be really big things. But if you think about it, most of us use supported decision-making a lot. So thinking about what you need to know to get started using supported decision-making.

[00:10:06] And the first thing to know is that full guardianship is not the only way. And I say that because it is typically presented as the only option, especially in schools, person will say, it might be an administrator, it might be just someone you know, who knows it could be anybody, but they will say, you know, guardianship is what you need if your child or student has a disability, you need to go ahead and get guardianship. And I know so many people who have been told that, and it might be true. It might be true for that person. But to say that that is the only way for all students with disabilities, it’s just not true.

[00:10:51] So a couple of things to consider are limited guardianship. And then nice thing about limited guardianship is it’s still has to go through the court, but if no other action is taken, then after five years that guardianship expires. And the other nice thing about that is that it can, it’s like it says limited, to just what that person needs the most help with. So it might be finances, it might be school decisions, and it can be a combination of these, but it’s not over every aspect of the person’s life. Just those areas where they need the most support. And like I said, it expires after five years.

[00:11:28] Which when you’re thinking about a person who’s 18, that could be really valuable because in five years that person might grow and develop a lot of skills and might not need that guardianship after five years.

[00:11:42] A power of attorney, representative payee for social security payments, a special needs trust, or other financial options, like joint checking accounts, you know, a stable account, things like that those can be helpful for people. And then a lot of us have heard the term circles of support. So just having people, a lot of people that can help the person out. And the circle can be, you know, there can be a small circle for really personal, intimate choices. And then the circle can expand when you’re talking about other types of choices, employment, living, things like that.

[00:12:22] And all of these can be used as part of or with supported decision-making. And this is just another way to think and look at that these are all the same things. So supported decision-making, and most of these other things except for power of attorney can be used with guardianship event. So it’s not, I don’t think of it as an either or type of thing.

[00:12:46] You can use supported decision-making and have a guardianship. And we won’t get in today to, you know, the real reasons why that’s real important, except to say that when you look at the research and you look at people’s lives, you see that people who are able to use more self-determination, have more control over their lives, they’re happier, they’re safer, they’re more contented. They have fuller lives. So using the concepts of supported decision-making, even if you just have that guardianship is the right thing to do for you, it is going to be important just for those factors of social, psychological and even physical factors.

[00:13:29] So, the next tip would be to know your student, know your child, and that’s not to say that you don’t know them better than anyone, it’s just to say also know what’s out there for them as far as supports. So what are they getting now? If they’re in school, what kind of supports do they have now? Are any of those supports still going to be in place when they leave school? Think about support, what supports in the future might look like? Are those going to be Medicaid waiver supports or is it going to be some kind of other less formal support? Or combination of them? Think about who is providing support and guidance now and who might do that in the future? A lot of people don’t think about the need to kind of expand the circle around a person when they’re leaving school cause some of those supports are gonna drop off at that point.

[00:14:32] When you’re putting together supported decision-making, a supported decision-making team think about how that person best receives and processes information. Do they prefer to read it on a piece of paper? Do they prefer to have it explained to them out loud? Do they prefer pictures or videos or some kind of combination of those? And do they understand that right away, or do they need a while to think about it? Do you need to step back and let them think about it for a little while before the decision is made?

[00:15:03] And also remember that they either, you know, a person either is an adult or will be an adult soon. So, a lot of times we think about, you know, having people, having the mental age of whatever, but that’s still a person who has 18, 23, 35 years of life experiences behind them. so just remember that, that person when they turn 18 is going to be an adult. And we need to think about how we treat adults and what kind of treatment and considerations adults deserve.

[00:15:45] So, we talked about adding to the team. An, this can be in a lot of ways. And I know Stella has talked about doing this. It usually starts with family, but also people who have been in the person’s life for a while, who aren’t, that aren’t going to go away with school when school supports end. And then as the person grows and has new experiences and gets out into the world a little bit more, are there people that come into their life that need to be added to the team? There might be someone from work, from school, just out in the community that they’ve gotten to know.

[00:16:30] So think about how you can interact more with different people. It’s really hard right now in the situation that we’re in, but there are still ways to reach out to people and get to know people and involve people in your life.

[00:16:44] And think about how much independence or autonomy that person needs and wants. Do they want, or need someone around most of the time or all the time? Or do they prefer to have a little bit more space? And think about how, especially as a person grows into an adult and starts living in the adult world, what that will look like when you don’t have those daily school supports.

[00:17:09] So the next tip would be to prepare your student or child for the future. So I found this drawing that Brittany did, that I thought was really great of the person stepping outside of their comfort zone. And this is hard because, especially as parents who spend so much time making sure that you’re taking care of everything that your child needs, that you need to make sure that you’re letting them make some of their own decisions and that they’re involved in the decisions. And that when they make a decision that they’re able to experience the consequence of that decision.

[00:17:45] So sometimes what happens is a person will make a decision and it won’t go well, but then they’re protected from that decision. Which comes from a place of love and you want to protect your child or the student, of course. But then that person isn’t learning how to make better choices later. They aren’t learning, I made a choice that didn’t go the way I thought it would, so maybe I should make that choice differently next time.

[00:18:13] So make sure that they are making age-appropriate decisions and that they’re able to experience the consequences of that decision. And this is a Stella Beard quote. So, when you’re trying to get a person to be kind of a better decision maker, if they ask you a question, redirect it to them. Say, I don’t know, what do you think about that?

[00:18:37] And then you can use that as a conversation starter to help them think through what they think they should do. Or even how they feel about something. Sometimes feelings are really complicated and you have to talk about them to kind of unpack them.

[00:18:51] Make sure that you’re on the same page about goals. So you might have a goal in mind for your child or student but makes sure you’re checking in with them constantly to be sure that that’s their goal. I mean anybody with teenagers or young adults or grown children will know that you can have all the plans you want for them, but if they’re not on board with it, it’s just really not going to happen.

[00:19:16] Hope you’re all are still hearing me okay. My computer’s just telling me I’m having network connection problems.

[00:19:23] Stella: We hear you great Laura.

[00:19:25] Laura: Okay, good [chuckles], hopefully that’ll continue. I’ve got two NTIers in the house right now.

[00:19:34] Also finally, discuss what guardianship or alternatives to guardianship will mean for the person. So that’s a step that gets skipped a lot when someone’s considering guardianship is they don’t talk about what that means for the person. Because you know, really it’s going to look like what it does when you’re a child, your parent or whoever the guardian is, is still going to be the person making decisions for you and about you.

[00:20:01] But as a person, you know we all want people to grow and develop as they age and so you need to talk about what guardianship will mean. You’re going to turn 18, but you’re not going to have the rights and control over your life that other 18 year olds have. I’m still going to do that for you. And like I said, to do it right, and even to do under the law or the way the statute is written, the person should be involved in decisions that are made for them and they should be, the guardian should help the person along in developing and growing more skills.

[00:20:42] So just make sure that they’re involved in all those discussions about what the future is going to look like and make sure everybody’s on the same page. So this could be making sure that they’re taking the lead in meetings and appointments. This is taken from another, medical tool we did, this picture is, but you know, a lot of times a person, a professional person, a doctor, a lawyer, whoever we’ll see a person with a disability. And if someone is there with them, they will direct all questions to that person, the supporter, rather than the patient or the client or whoever it is.

[00:21:19] So make sure that the conversation, even if the person doesn’t use verbal communication, make sure that that person, the professional, we’ll say that the doctor in this case is, talking to the person about them and make sure that gets redirected to them.

[00:21:38] And again, if the person doesn’t use verbal communication or if it’s limited, make sure that they have that communication system available at all times. And that that form of communication is validated and are respected by whoever they’re using it with.

[00:21:54] So the fourth tip, is to know your resources. —

[00:22:01] Stella: Laura can I say something there that I think that I’m just now putting together for Clayton in this very kind of situation. Is because when we do go to the doctor, or anywhere else where I’m still there with Clayton, he still really looks to me, of course, for answers and assistance. And I started thinking about it going, you know, it’s time that we start to get him more, you know, on board with some of these other things like this, when we go to the doctor and stuff.

[00:22:38] So what I’m doing is I’m creating a little cheat sheet for him because I have a cheat sheet, it’s in my phone and in my phone, I have all the medicines that I take, you know, when I’ve had a surgery, cause I can’t remember all that when I go. And so I’m creating one for him that won’t be in his phone, but it’ll be something that we can take with us when we go to the doctor. And that gives him the opportunity to, he’s not going to know it all of course, he’s not going to have it all memorized, but he’s at least going to feel like he’s the one in control, giving the information to that person.

[00:23:16] So we’re kind of working on that right now. And I think that’s a good little tip for families to be able to allow their young adults to have a little more control. But yet not, you know, I just know that Clinton’s not going to memorize all of that. Just like I don’t have all of mine memorized.

[00:23:38] Laura: That’s a great point Stella, I really liked that. And it also brings up the point that support doesn’t always have to be a person. Right. We can use technology, as a support. You know, some people when they’re trying to live more independently, they’ll use medication reminders or set alarms on their phone or things like that.

[00:23:57] But I think that’s also really important to think about for any young adult. How many college kids are calling home asking, you know, when did I have a flu shot? What’s the name of, when do I take this medication? You know, they’re constantly calling home to ask questions about things like that, because they’ve never had to worry about it before.

[00:24:18] And it does become something that needs to be more intentional for a person who has a disability, because a lot of times, you know, you think, oh they have somebody else that will handle that. Or they won’t, like you said, they won’t be able to memorize that anyway. So why should I bother? Well, that’s a pretty high standard too, like you said Stella you use it to. To expect everyone to memorize all of their medical history and everything like that.

[00:24:45] So having it written down in a way that they can access easily, you know, not just medications, but, phone numbers. I don’t remember phone numbers anymore. I just push the button that’s on my phone. But yeah, that’s a really important point, thanks Stella.

[00:25:04] So it kind of flows right into knowing your resources and tools. We’ll go into this a little bit more in depth, but so one resource is our project, My Choice Kentucky. We have a website and a Facebook page. And on those, you can find a couple of videos that we’ve made with participants, including Clayton and Stella. And they’re talking about their experiences. We right now have another one up there, a lady whose name was Dawn, who used supported decision-making to avoid guardianship.

[00:25:37] So those are, our team here at HDI was able to get those put together, even though we recorded them after the time of COVID. So we weren’t able to do it the way we want it to, but I think they turned out nice.

[00:25:50] Kentucky Protection and Advocacy has a book on guardianship and alternatives. It’s on their website. There’s the practical tool when you’re considering whether or not a person needs guardianship, and that’s one of the handouts that you have access to there. But it was developed by the American Bar Association, so it’s called the PRACTICAL tool for lawyers, but it’s really good for anyone. And PRACTICAL is an acronym. So each letter is a step in the process and the very first one is Presume the person does not need guardianship. So you’re starting with that mindset and then looking forward.

[00:26:27] So it’s really nice. We’ll talk a little bit more about that in a minute. There’s a tool called Finding the Right Fit and it’s a web tool, so you get on there and you have to make an account, but then you answer questions about the person and they give suggestions for what they think would be the best level of support for that person.

[00:26:48] There’s a National Resource Center on supported decision-making. There’s also going to be, as soon as it’s awarded, a National Center on Young Adults and Alternatives to Guardianship. I don’t know what it’s going to be called yet because it hasn’t been awarded, but that will be awarded sometime this month and we’ll get up and running after that.

[00:27:11] There are also books on supported decision-making. There’s a book that’s kind of a book for everyone. And then there’s a book that’s a textbook, if you really want to get deep into supported decision-making and the research and literature about that.

[00:27:30] So I’ll talk a little bit more about the PRACTICAL tool and that’s the one that you have access to there. And so PRACTICAL, and you can go on to the next slide Stella. PRACTICAL stands for Presume, Reason, Ask, Community, Team, Identify abilities, Challenges, Appoint and Limit.

[00:27:50] So basically, and you can see that the picture of the first page there, it’s kind of a checklist. And so we presume that the person does not need guardianship. And then you think about the reasons why guardianship was initially considered. And then it goes through, you know,  asking about this is a permanent situation, is this temporary? Are there other ways that the person can get support that not guardianship? Who is going to be on the team? What can the person do? What does the person need more help with?

[00:28:22] And then finally gets to the L and the L is Limit. So limit guardianship to just the areas that the person needs some most. So again, accessing that limited guardianship, which especially here in Kentucky is really under-utilized I think. And unfortunately, when you go, when you file the guardianship paperwork, you can request limited guardianship, but the judge can still decide to award full guardianship. So just know that once you filed the petition for guardianship, what happens after that, and for the length of the guardianship is in the hands of the court. So that’s an important thing to know and a thing that people don’t always know before they filed a petition.

[00:29:06] So the next tool links, that’s in your handouts and there’s also a link there for it. Like I said, there’s a textbook, on Amazon. And this is, it’s textbook price at about $82. But it was written by the real pioneers in this field of supported decision-making. And so Michael Wehmeyer has been called the father of self-determination. He’s now calling himself the grandfather of self-determination. But all these people are people who have really guided my work. And it’s an interesting read if you really want to want to geek out on supported decision-making.

[00:29:48] The other book, was also written by one of the couple of leaders in the field, along with Jenny Hatch. And Jenny Hatch was sort of the first big supported decision-making rights restoration case. And so she has a really interesting story, and this book, and I think Stella you have it. It’s a better price for one thing, but it’s also much more user friendly and it talks about using supported decision-making in different settings. And it’s a nice book.

[00:30:22] Stella: Yes I love the book Laura, and it’s a real easy read. You know, it’s not, I mean, you know, I’m not going say that I sat down and read the whole thing, but I was able to find and pick out things that was interesting to me at the time. And I thought it was a real easy read. I think parents would really enjoy it.

[00:30:43] Laura: Yeah. It’s a nice book. And I actually, when I got my first copy of it, I was flipping through it one day and saw that it was actually printed in Lexington, even though these people are not from Kentucky, so that was interesting.

[00:30:59] So another thing we have that specific to Kentucky is Protection Advocacy recently updated their book. It used to just be on guardianship in Kentucky, and now it’s on guardianship and alternatives to guardianship in Kentucky. So it’s a nice, plain language, easy to read document about what guardianship means. It’s got all the alternatives. It talks about how to change or, and the guardianship and the legal process for that. So it’s a nice book.

[00:31:32] I will also say that hopefully in the next couple of weeks, we’ll have another book, a booklet really finished that we’re working on with the Commonwealth Council and Developmental Disabilities that talks about, more specifically about out supported decision-making and supported decision-making in Kentucky. So hopefully that’ll be out soon.

[00:31:54] Okay. And I think I still have time, right Stella, o talk about some of these cases?

[00:32:03] Stella: You’ve got 30 minutes.

[00:32:04] Laura: I’m talking so fast. So, okay,  so I’ll talk a little bit about a couple of these folks. So the, there’s a picture there, and in the middle, you see Susie. And Susie was our own Jenny Hatch, and she was the first person in Kentucky to have her rights restored using supported decision-making. And Susie really got lucky. So Susie had been in the foster care system, and when she became an adult, she got a full legal guardianship and she had a State guardian. And so she didn’t think she needed any more, her team didn’t think she needed it anymore, so she went, they filed a petition. She went to court and the judge was essentially getting ready to throw out the case, not let her, not even really hear it.

[00:33:01] Luckily, when our partner, Protection Advocacy, Camille Collins was in the courtroom and she said, judge, can you appoint an attorney because she didn’t have an attorney and we’ll come back and try for partial restoration. And he said, yes. So she was appointed an attorney and that’s the taller lady with the curly hair that you see there with her from the picture.

[00:33:26] And she got lucky because the attorney was willing to come and meet with her team and talk about supported decision-making and see how she lives her life. And how she uses supported decision-making. And these attorneys do not get paid a whole lot to do these cases, a lot of times they don’t even meet the person until they show up to court. So this was, you know, kind of extraordinary, like I said, she got lucky that Protection Advocacy was in the court room,  she got lucky that she was appointed this particular attorney.

[00:33:56] And so we worked with her, we worked with her attorney and went back to court, kind of just hoping for partial restoration. And went to court, then the attorney argued that she uses supported decision-making, and this is how she lives her life, and this is how she makes decisions. And the same judge ended up giving her, restoring her rights fully. So she had no guardian at all for anything after that. So that was really, you know, exceeded our expectations, especially since this was our first time trying this.

[00:34:32] And it was just really exciting for us. And so what you see there is Susie and one of her supporters and her attorney and the vision board that she took to court. And we didn’t really talk about vision boards, but it is a tool that a lot of people use, you know, a lot of people not just for supported decision-making, but for other things. And the way Susie did hers is she basically laid out a five year your plan and if you look real close, you can see some of the dates on there.

[00:35:01] But she had, you know, the date and here are pictures of all the things she wants to accomplish in that year. And then, you know, she went on to different years and then on the back she had her team and people that are important in her life. And she and her team did a really good job putting this together and they did it on a corkboard. Which is good cause you know, she can change the goals on it now as she achieved, and one them was to get her rights back, which she did.

[00:35:28] She had her boyfriend’s picture on there and she’s had five or six boyfriends since then, so she can just take them off and put the other one back up. So that was a nice tool that her team helped her do, and that a lot of people who we’ve worked with have done. And it’s a good way for people to think about their goals and lay them out and also have it for their team to be able to show their team what they want, their goals, what they want their life to look like and what their goals are.

[00:35:55] So, that was an exciting case. I’ve got Dawn on here as well. I talked a little bit about Dawn, is a woman who, there’s video you can watch that she did. And she wanted to move out of a staff residence into a family home provider. And she already knew who she wanted to live with. And the person wanted her to come live with her. And her sisters were saying that they didn’t want her to do that. And so, and this is an important lesson too. So her supporters who were very strongly, very passionately advocating for her said, you’re not her guardian, you can’t make that decision for her. And they said it so much that the sister said, Oh, well I guess what we need to do is get guardianship.

[00:36:44] So that’s when we had to step in and kind of get a, control situation a little bit. And so basically the sisters were talked out of finally for guardianship. Dawn did move into the family home provider. And if you watch her video, you can just see how well her life is going now that she was able to make that big decision for her life. And show everybody really that she knows who she is, she knows what she wants and she might need help with things sometimes but she knows how to ask for that. And she also knows how to advocate for herself. So if you get a chance to go to our Facebook page and check out her video, it’s really nice.

[00:37:28] So another one we had was Joseph Bickman. So like Stella and Clayton, Joseph’s mother was his guardian. And they both decided that this wasn’t something that he needed anymore. So they kept kind of trying  to file the petition and it just like weren’t even being taken seriously because in this County, and you can see it’s Mercer County, they just said, well, this isn’t something that we do. We don’t give peoples’ rights back.

[00:38:00] And so Protection and Advocacy stepped in to provide a legal representation for Joseph. And you can see, it’s hard to see, but there’s a picture of Joseph and his attorney, Kevin from Protection and Advocacy in front of the Mercer County courthouse there. And so, again, he was kind of lucky in that they still had, he still had an appointed attorney who would had been a County attorney there in Mercer County. And he called me on the Friday before court was supposed to happen on Monday. And was talking to me about, he talked to me for about an hour about supported decision-making and what it meant and what it would be like. An, he kept talking about Joseph’s evaluations and the numbers, like his IQ and things like that. Well, you know, but when you talk to Joseph and you see how he functions in life, that those numbers don’t really reflect what he can really do. And he’s like, yeah, yeah, I guess so it’s just hard to see.

[00:38:59] And I was like, well have you met Joseph? And he said, no. Okay, you need to meet Joseph and figure this out. So he did schedule a time to meet with Joseph and his mother and our supported decision-making team about hour before court. He got convinced, he was convinced. So we go to court and to make a really long story a little bit shorter, the judge, after a lot of talking and hemming and hawing finally restored his rights. And everyone kept saying, and it was the first time they’d ever done this in Mercer County. And it couldn’t believe that, but they wrote an article about it in the local paper there. So everyone who’s alive and can remember anyway, does not remember ever having had a person have the rights restored in Mercer County until Joseph.

[00:39:43] So that was a situation where both he and his guardian, who was his mother did not want it anymore, but the court was in control of whether or not that happened. So, now Joseph does have his rights. He’s living his life very similarly to the way he was before, but he actually has control over the decisions and the right to make decisions and sign contracts and do whatever he needs to do for himself now.

[00:40:13] So Judith was a lady who had had a guardian for a long time. It was the state guardian. She really did not want this guardian anymore. And her supporters were very strong and that she did not need this guardian anymore. And Judith was, Judith took the stand at her hearing. And she was really powerful for when she was testifying. And, you know, she talked about how she goes shopping and she bargain hunts., and she talks about how she gets support in making her medical decisions and her appointments. And she knows who to go to, to ask about what decision she needs to make. She’s got some people she asks about medical staff, other people she asks about her living situation.

[00:41:01] And she was so impressed that the County attorney he’s kind of supposed to be, you know, on the other side of this, but the time she finished questioning her, just kind of said, you know what Judge, you’re right, she doesn’t need a guardian. So she got her rights back. And what she wanted to do was run through the big fountain in front of the courthouse. And that’s what you see there is Judith, there on the right side of the picture and one of her supporters running through that fountain. And, you know, kind of exercising her first choice to run through a fountain. And somebody else might’ve decided that was a bad idea, but that’s what she wanted to do. And she did it and she loved every minute of it. So that was fun. That was probably the most fun post-guardianship hearing celebration we’ve had so far.

[00:41:49] So, that’s all I plan to say. Normally it takes me longer to say all that, but I’m happy to answer any questions that you have.

[00:42:02] Stella: Laura, one of the questions, that I get sometimes from family members, is, you know, they’re out of that fear and, you know, it was one of my questions, if you remember way back when, when we started our conversation about Clayton and guardianship and then getting his rights restored. Is the fear parents  have that, you know, what if they do something or what if something happens and I’m not there to protect them? And  I remember, you know, you said just a minute ago, you know, a lot of things don’t change immediately, if a family member is a guardian, and then they’re not anymore.

[00:42:49] I mean, we didn’t kick Clayton out of the house and you know he’s still here, of course. But, what are some of the things that, you know, I know what you told me, but I think it would be good to say, what are some of the things you shared with me that day that, you know, helped ease my mind on the parents having that fear that, you know, something might happen?

[00:43:09] Laura: Yeah. And I think that’s a really important point and I think it’s, you know, it can be important for parents and also for your child, for your young adult. Cause it’s Clayton had some of the same fears. And we had to talk through that a lot with him at the beginning of that, you know, your mom’s not going anywhere. She’s still going to be your mom. She’s still going to be around the help. Your family’s still going to be here. You’re just gonna have, you know, the right to be able to say yes or no about the big things in your life.

[00:43:40] And I think for parents and I didn’t go into this because we didn’t have a lot of time, but I alluded to it a little bit. When a person has more control over their lives, when they feel empowered, they’re going to be safer. And there’s research to back this up. And they’re going to be healthier. They’re going to be psychologically and even physically healthier if they’re able to have control over their lives.

[00:44:08] And so if you think about it, if you think about fear being your motivation for getting guardianship, consider if guardianship is going to really alleviate that fear? So is guardianship going to do what you want it to do? And that’s one of the things that it talks about a little bit in the PRACTICAL tool.

[00:44:28] So, a lot of times, the parents will say, well, I don’t want the person to get taken advantage of. Okay, what does that mean? What do you mean when you say you don’t want the person taken advantage of? And if it’s financially, you can put protections in place for finances. If it’s, you know, in some other ways, some personal relationship, a guardian is not going to be able to stop that. Most guardians, maybe a little bit more now than in normal life, but usually a guardian is not following a person around 24 hours a day, seven days a week.

[00:45:02] And especially as a person grows into an adult, you want them to be able to be out there and meeting more people and expanding their lives and, you know, making it more full. And so by teaching the person how to be as safe as possible, that’s the way that you can hopefully eliminate some of that fear for yourself and for them. And, you know, there are always going to be protections in place for every person in the country that are going to be there, whether the person has a guardian or not. So those protections are in place for everyone. And if the person has Medicaid waiver services and there’s a whole other safety net there for them as well.

[00:45:45] So I think that, and Stella you can talk to the fear and in Stella’s video if you’ll want to watch that, she talks about it there too. But fear is a really strong motivator, but I think if you take the time to step back and think about it a little bit more clear-eyed you can see that making the person feel more empowered is the way to really make everyone feel a little bit safer. And trust me, I know that an empowered teenager is not a whole lot of fun, but that’s how they become confident adults who are able to take care of themselves later in life.

[00:46:25] Stella: That’s exactly right. You know, the first time I ever heard the word, I believe it was from you and it was called learned helplessness.

[00:46:32] And I think that’s a great way of saying, you know, as long as we are constantly doing stuff for them, they are never going to have to learn how to do it themselves.

[00:46:43] Laura: Correct.

[00:46:44] Stella: You know, I’ve had to learn that the hard way. Not just with my son with an intellectual disability, but my other children, because I am a fixer, so I want to fix everything and make everything beautiful and happy. And you know, that’s not life, that’s not real real life. So we have to allow them to fail, just like anyone else. Because we’ve all get where we are because we’ve made mistakes. I

[00:47:09] t’s like I was watching this video the other day and it reminded me of exactly what I’m trying to do with Clayton, is it’s like it was a little baby, a little bitty baby, and how they put that baby in the water. And, you know, a lot of people would look at that and go, Oh my God, I can’t believe you’re putting that baby in the water. But guess what? That baby immediately knew how to swim. It’s like it was an instinct, you know, that baby began to swim to the side. And then there was this other image of an older child who had never been around water. And, you know, they were terrified of it, of course, because they didn’t know what to do. And the whole point of that video that I was watching was to say, you want to teach your children what to do if you’re not there.

[00:47:59] They’re talking about people who had a pool in her backyard, you know, you want them to know if I’m not around, here’s what you do. You learn to swim and you swim to the side. And, you know, I thought that was really good because I think that’s what we don’t do a lot. I think we just we fix it for them so they don’t have to learn themselves and that’s not good. And you know, so I’ve had to learn the hard way. And I think that’s something we as parents need to do better for all our kids with or without disabilities.

[00:48:30] Laura: It’s true. It goes back to the tip number three, about preparing your child for the future. And one of the things that it might not alleviate your fear, but it might help you accept it, is to realize that the world is just not a safe place. It doesn’t matter if you have a guardianship, if you have a guardian or not. Sometimes the world isn’t safe. So teaching a person how to navigate that world is going to make it possible for them to be as safe as possible in that world. Absolutely.

[00:49:05] And, you know, in Washington, DC, they have supported decision-making implement throughout school, starting in pre-K. So they start students, allowing them and encouraging them to make decisions that are appropriate for their age and then experiencing those consequences, like we talked about. So then the goal being that when they’re 18 or when they leave school, they’re ready and they’ve been able to practice making decisions. And they are better prepared to do that at that point.

[00:49:40] And so one story that a person from DC told me it was that they had a student, she worked at high school and they had a student who really embraced all this and became really empowered. And they were 19 at the time. And they went out and got their own job without their mom knowing about it. And the mom was kind of —

[00:50:02] Stella: I love it!

[00:50:03] Laura: And the mom was kinda mad at first, but they lived in DC, he was, he had already, he knew how to ride the Metro there. And so he didn’t need transportation or anything. And so he just he went out and he got a job and he knew how to get there. And so then they just had to figure out his bank account. But, yeah, so it was, you know, like I said, empower teenagers are not always  fun, but it’s an important skill for them to know.

[00:50:33] Stella: Absolutely. I think that’s a great example. Yes, most definitely. Well, I don’t see any more questions, but, you know, of course I’m throwing up those slide now with your contact info. So if people wanted to reach out more.

[00:50:51] One other thing maybe you can touch on since we do have a couple of minutes, is what are some of the steps that families can do? So let’s say, you know, they’re not a child, their child’s guardian, right. They want to do something different. So they don’t have to go through the steps of getting rights restored, and all of that. What are some of the things that they can put in place? I know, you know, you mentioned, the, oh goodness, what was on the other slide? I remember you had that slide up there, but what are your thoughts on, you know, like power of attorney? Is there something that can be written in that power of attorney to say that they’re using supported decision-making? And what that could look like? And I think that’s something that families might like to know, you know, what are those next steps?

[00:51:44] Laura: Yeah. So I think, you know, whether you’re not getting guardianship or you’re, or the person’s getting the rights restored, we always recommend, you know, a power of attorney and, medical directives. And things like that, that people should kind of have in place anyway. And I know that there have been cases where people have had supported decision-making written into that power of attorney. And in some other States where they have laws that mention supported decision-making, specifically, they have some language in there and the power of attorney there.

[00:52:19] And we have, our partners at Protection Advocacy have actually been working on kind of drafting something that would be a power of attorney that would include something about supported decision-making. And I know that those drafts have been done, but with everything happening P and A has been a little bit overwhelmed with protecting people’s rights during this COVID time. So they have not had a chance to review those yet, but it is something that we’ve been working on.

[00:52:50] Stella: And that’s what I did Laura, if you remember, I took some of your guidance and we incorporated that supported decision-making piece into the power of attorney that we had created. So, I think that that was, that really helped me. So I’m looking forward to when you all do get all those examples out there. I think that will be really good.

[00:53:14] Laura: Yeah. And we, part of the goal of our project is to sort of build capacity. So we try to get into as many new Counties as we can when we’re doing restoration cases, because it helps us educate that court system about supported decision-making and alternatives and things like that. So hopefully as this grows more and more people become familiar with supported decision-making, then those things, you know, with supported decision-making written into them, like powers of attorney can be, you know, honored and respected for what they are. And they should be anyway. But again, sometimes it goes back to the attitudinal barriers of folks, and they see a person with a disability and kind of assume that they can’t do things like make decisions.

[00:53:58] But having, you know, a representative payee is something that person they have, even if they have a guardianship that’s not tied to guardianship. And the same with trust and able accounts. But, you know, those are protections that can be put into place for a person with, or without guardianship. The only thing that you couldn’t do within a guardianship is a power of attorney because that’s a legal document that the person would not be able to sign if they have full guardianship.

[00:54:24] But I think having all those things, and we’ve even used it in court as a tool, had a power of attorney ready for the person to sign. Went through it with them to make sure that they understood what it was. And then when they were in court, having them explain that to the judge, so that the judge and see that when properly explained they can understand complicated legal documents, and they will know what they’re signing. They just need that extra support to do it. And a lot of us need extra support to understand legal documents so that it shouldn’t mean  —

[00:54:51] Stella: Absolutely, I mean I don’t understand them most of the time so. [laughs] That’s great. Well that’s wonderful, Laura, thank you so much. I think this has been a great webinar and I will also, when we send out the follow-up email, I will put the MyChoiceKentucky.org website there for families to go look at. And, I think that’s really good.

[00:55:18] And also encourage them to look on your Facebook page, to find some more information and just read those stories. Because I think the stories are so important. I think it gives families, you know, hope that things can be different. And, you know, I guess one of the things that I want to say, don’t, if you’re, you know, if you are your child’s guardian, don’t beat yourself up over it either. I mean, we make decisions based on where we are at that moment and there is absolutely nothing right with that. But just know that, you know, you don’t have to stay there if that’s not what you feel like is best. If it’s best, then stay there. These are just, you know, a lot of opportunities and alternatives that we want to make sure that families are aware of because like you said, Laura, a lot of times, I don’t think they are aware that there are other things out here.

[00:56:08] So, I think that’s wonderful that we are getting that information out and we thank you for all you do in the State and with working with families. And we really appreciate you joining us today on our webinar. So thanks again.

[00:56:21] Laura: Thanks for having me.

[00:56:22] Stella: And we want to ask everyone to please complete the evaluation at the end. You’ll be prompted as soon as the webinar is over to complete the evaluation. And it really helps helped us determined whether or not, what we’re going to do for our next, you know, webinar.

[00:56:41] We are having, webinars every Tuesday and every Thursday. On Tuesday, we are doing what we’re calling the Tuesday Tips. And we’re taking topics and breaking them down and providing some tips for family or we’re updating families on what’s going on right now with COVID-19. And then on

[00:56:58] Thursdays, our webinars are more topic based. And so we’re doing, you know, offering some things like that. So visit our website, it’s up on the screen, www.kyspin.com for all of our upcoming events.

[00:57:15] And again, thanks Laura we really appreciate it.

[00:57:17] Laura: Thanks Stella!

[00:57:18] Stella: And I hope everyone has a great day.