KY SPIN’s Charting the LifeCourse Guardianship Alternatives Part 2 of 5 Webinar

Stella: Well, good morning everyone and happy Thursday. Thank you all for joining Kentucky SPIN today, as we go into part two of our five part series on Charting the LifeCourse. Today, we’re going to be talking about a framework for creating the life you want, and we’re going to be actually really centering in on guardianship and alternatives to guardianship.

[00:00:23] I’m Stella Beard with Kentucky SPIN, and we have Kellie Smith with us also from Kentucky SPIN. And Kellie is going to be doing the presentation today. And of course I always chime in, but before we get started, I want to tell you just a little bit about Kentucky SPIN in case you’re new to our webinars. We are the Kentucky Special Parent Involvement Network, we are the parent training and information center for the state of Kentucky or another acronym PTI.

[00:00:50] We are funded by the U.S. Department of Education. And we’re actually a mandate under the Individuals with Disabilities Education Act. And we have been the parent training and information center for Kentucky since 1988. So for many, many years, and we just got funded again for another five years. So we’re very excited about the opportunity that we’re still going to have to share much needed training and information and support for children and youth, with all types of disabilities. We work with parents, families, and professionals. So we’re very excited that we still are able to do that in Kentucky.

[00:01:26] Something we do not do, is we do not act as attorneys. We however empower families to effectively advocate for their children and we provide peer support to help families access needed information and resources. So I think that’s really important to know that we do not give legal advice, but we do provide all the resources. We partner with many, many agencies across the State and are able to provide those much needed resources for families, that are so needed, not only during this pandemic that we’re going through, but also just regular resources and information.

[00:02:03] We have a wonderful website with lots of wonderful information that we’ll talk about at the end of our presentation a little bit more. But I wanted to kind of go over a little bit of housekeeping with you. On the right hand side, you will see a dashboard. On that dashboard you will see a drop down box that says handouts. The PowerPoint from today’s presentation is included. We do have some wonderful handouts that we will be sending in a follow-up email with links directly to those handouts. So that will be something that you’ll be getting later this afternoon. So expect that. We will also include the PowerPoint, so if you don’t want to take the time to do download the PowerPoint right now that’s totally fine. You can wait and get it in the follow-up email.

[00:02:47] Also, you will notice a box called questions. If you click that little arrow to drop down, you can type a question in. I will be monitoring the questions for Kellie today, so we will be sure and answer your question hopefully by the end, if not we’ll have time at the end to answer any additional questions that we didn’t get. If for some reason we don’t get to your question, we will reach out to you personally so that we can make sure that everyone’s question is answered.

[00:03:15] So at this time, Kellie, can you hear me? I’m going to let you get started with today’s presentation.

[00:03:21] Kellie: Alright. I can. If you can hear me okay. I’ll go ahead and get started.

[00:03:27] Stella: Sounds good on my end.

[00:03:29] Kellie: Alright. So like Stella said, my name is Kellie Smith and I am a Training Coordinator for Kentucky SPIN, and I do appreciate you spending time with us today.

[00:03:41] So, like she said, this is part two of our Charting the LifeCourse series. And if you’re not familiar —

[00:03:49] Stella: Kellie, I hate to interrupt you. I hate to interrupt you, but you are going in and out.

[00:03:54] Kellie: Okay. I’m going to put headphones in. Hold on.

[00:03:57] Stella: Yes.

[00:04:08] Kellie: Okay. That should be better.

[00:04:10] Stella: Yes. Perfect.

[00:04:13] Kellie: Okay, sorry about that. Okay. So if you’re not familiar with the LifeCourse tools, they are simply tools to help individuals communicate their needs and wants. So the cool thing about Charting the LifeCourse materials is they can be used by anyone for many different situations. These are not just for people with disabilities. They can be used by everyone.

[00:04:45] So did you know that regardless of a person’s disability or the severity of their disability, once a child reaches the age of majority in Kentucky, which is 18 years old, the parent is no longer their legal guardian and cannot make decisions on their behalf without their consent?

[00:05:07] This applies to, just like the rest of us, you know, when you turn 18, nobody can make decisions for us, we can make it them on our own. The same goes for our children with disabilities, regardless of the severity of their disability. And parents are usually pretty surprised by that. They’re also pretty surprised when, from the educational standpoint that, they may no longer, they’re not going to be notified of an ARC meeting or an IEP meeting in school without the students saying, you know, that’s okay, if they don’t have guardianship.

[00:05:47] So, the age of majority is an interesting time, but once a supporter or a parent of someone with a disability realizes that he or she may need to pursue guardianship there’s some things that we must consider. The next few slides are going to discuss the different types of guardianship, alternatives to guardianship. And then we’re going to dive head first into supports that can be used to help us determine the level of need for a guardian and or how to identify and communicate alternatives.

[00:06:20] So adult guardianship. If you don’t mind in your questions box or in the chat box, would you mind typing in what you think, what’s the first thing that comes to your mind when you hear the term adult guardianship? We’re going to give you just a couple of minutes to get that, get those in, because I think it’s very interesting as we all view it kind of differently.

[00:06:51] Stella: I’m watching to see if any responses are coming through. You can type it in the question box, or you can send it to the entire audience in the chat box.

[00:07:13] I’m not seeing anything. Kellie.

[00:07:15] Kellie: All right.

[00:07:16] Stella: I know one thing that comes to my mind is, it’s, you know, kind of a little confusing because you think, well  I’m gonna have to, you know, be there for everything and they don’t have any decisions on their own or something like that. I know it can be a little misleading to families.

[00:07:37] Kellie: Right. And what comes to my mind is basically a traumatic event for that individual. Just this morning and I’ve always felt that way. I do not have guardianship of my adult child with a disability. He has a traumatic brain injury.

[00:07:58] So I see one that says caregivers come to my mind. I see some more. Can you see those Stella in the question box?

[00:08:15] Stella: Yes, I think it’s just a little delayed. So someone has complete control. Caregivers come to mind and the rights of the individual taken away.

[00:08:24] Kellie: Okay, very good. And like I said, I tend to think more along the lines of it can be, you know, traumatic for an individual with a disability, whether that’s a young individual with a disability or an older person with a disability, or someone who may be just aging and can no longer do things that they could once do. I feel like guardianship could absolutely be or losing their rights could be very traumatic for them.

[00:09:03] As a matter of fact, this morning, just this morning, I was on the telephone with my son’s job coach. Like I said, I do not have guardianship of him. But he’s got some issues going on. And my husband and I have really been discussing more and more whether or not we need to pursue guardianship. And the first thing that his job coach said to me is how will that affect him?

[00:09:33] And I think we all need people like that in our lives. I’m very thankful for his job coach because  she kind of helps me put things in perspective. So I guess she sees it kind of like I do. And her personal experience and feelings is that it could be traumatic if that person is able to understand what is happening.

[00:10:02] So guardianship is a legal tool that grants a parent or other adult the legal authority to make decisions for a legally disabled adult. There are a few different tops of guardianship, such as limited guardianship, conservatorship, or limited conservatorship. So we’re going to quickly discuss these differences.

[00:10:33] Okay, so a guardian has complete responsibility for the person, including their financial affairs. A limited guardian doesn’t have all the legal powers and duties, the judge will pick and choose what’s needed. A conservator has the responsibility for the person’s financial affairs. And then a limited conservator has some responsibility for the person’s financial affairs. Again, the judge will check those boxes on the guardianship document as to what rights the guardian has.

[00:11:08] And it’s important to remember that guardianship should only be sought if there are no other alternatives available. And so we’re gonna start talking now about those alternatives. Does anybody have any questions about guardianship or the types of guardianship before we start talking about alternatives?

[00:11:34] Stella: Kellie, on the different types of guardianships, how does a family go about really deciding what’s best for them? It’s my understanding, I believe if you file for guardianship, the judge pretty much makes the decision after all the information is shared, with them. So it’s not so much that you can walk in there and say, I want to be a limited guardian. It truly depends on what the judge’s decision is.

[00:12:02] Kellie: Absolutely. And they’re going to be, the person, we’re going to say your child at this point, just for the sake of this conversation. So the court will then assign three people to come to interview your child, so to speak. There’ll be a, let’s see, I’m trying to think right off the top of my head. There’s what, a psychologist. Do you remember Stella? There’s three different individuals that will interview that person.

[00:12:32] Stella: Yes. It’s a psychologist, psychiatrist and a medical doctor.

[00:12:36] Kellie: There you go. So, and then those people will make recommendations to the judge. And the judge will make the final decision.

[00:12:46] Another thing is in the State of Kentucky, you used to have to go court. And it was, like a trial basically, but there now are options to where you may not have to do that. But we have another training on guardianship specifically that dives into all of that. So if that’s something you need or you’re interested in, feel free to reach out to us. And it’s probably actually on our YouTube channel now that I think about it.

[00:13:17] Stella: Yes I’m pretty sure it is.

[00:13:21] Kellie: Okay. So I don’t see any questions.

[00:13:24] So alternatives to guardianship. Some alternatives, that we will not be diving into today are representative payee, and this allows someone to manage SSI or social security disability, checks and other funds for that person. Then there’s power of attorney. So this gives one person the ability to make certain decisions on behalf of the other. But when we’re referring to power of attorney, the individual or your child or whatever, they can revoke that at any time. Which is also important, I think for sure people to know, because they often don’t understand that all it takes is that individual, you know, writing a statement or sending something in saying, I no longer want this person to be my power of attorney.

[00:14:20] And then there are special needs trusts, and stable accounts. A special needs trust is an important planning tool for financial security, for any person in a guardianship arrangement. It is an approved vehicle for securing the funds of an adult with guardianship in such a way that it does not jeopardize access to valuable government benefits like Medicaid and SSI. A stable account is an investment account available to eligible individuals with disabilities. Accounts allow the individuals with disabilities to save and invest money without losing eligibility, again, for certain public benefit programs like Medicaid or SSI.

[00:15:10] And then so finally, the next guardianship alternative that we’re really going to dive into today is supported decision-making. And we’re going to talk about using the charting the LifeCourse tools for supported decision-making.

[00:15:29] So I’m going to show you how to use these tools to determine whether or not you need a guardian, the level of guardian needed, and just different things like that.

[00:15:44] Okay. So, CtLC is Charting the LifeCourse and Charting the LifeCourse has different stages and domains. The life stages in the Charting the LifeCourse framework are prenatal and infancy, which is from conception through the earliest years of babyhood. Then you have early childhood, that’s the time in a child’s life before they begin full-time schooling.

[00:16:13] And then you have school age. This is the years from kindergarten up through middle school. Transition to adulthood, that’s moving from childhood to young adulthood and from school to adult life. And then adulthood, that’s the period of time after we transition from school years through the time we begin to enter our golden years. And then aging, the golden years are when we begin to slow down and experience many age related changes.

[00:16:50] And then there are six life domains. The life domains are daily life and employment. And that’s what a person does as every part of every day, you know, as part of everyday life. So you’ve got school, employment, volunteering, communication, routines, life skills.

[00:17:09] Community living that’s where and how someone lives. Housing and living options, community access, transportation, home adaptations and modifications.

[00:17:22] Then managing and accessing healthcare and staying well, that’s medical, mental health, behavioral health, developmental wellness, and nutrition. I’m sorry. That’s healthy living.

[00:17:38] Then we have safety and security. Staying safe and secure. You know, what to do in emergencies. Their general wellbeing, guardianship options, legal rights, and issues.

[00:17:52] Social and spirituality, building friendships and relationships, leisure activities, personal networks, and faith and community.

[00:18:01] And then finally advocacy and engagement, building value roles, making choices, setting goals, assuming responsibility and driving how one’s own life is lived.

[00:18:13] So these life domains cover a lot. And a lot of that, people often don’t think about. They’re just part of life as we go through the day to day, these are things that we encounter and we do, but the Charting the LifeCourse tools have like really broken them down for us. So we can really look at each area of our life.

[00:18:42] So today’s focus is going, since we’re talking about guardianship and alternatives to guardianship, we’re going to be focusing on the transition to adulthood, adulthood, and aging across all Charting the LifeCourse domains. So since we’re talking about adults, that’s only what we’re going to focus on today and guardianship across all domains.

[00:19:12] So supported decision-making. Supported decision-making is a recognize alternative to guardianship, through which people with disabilities use friends, family members, and professionals to help them understand the situation and choices they face so they can make their own decisions with the need for a guardian.

[00:19:34] So, I’m a huge fan of supported decision-making. We’ve used that a whole lot with my son. I know many, many people do use supported decision-making. The supported decision-making is not only for people with disabilities. It kinda has been thrown into this category, but we all use supported decision-making.

[00:19:55] I would say all of us have a doctor or have seen a doctor if something’s wrong with us. So we’re, you know, it’s an area we’re not familiar with and we’re seeking help from someone who’s more familiar. Or an auto mechanic, or, you know, our accountants, you know, whatever the case may be, we all use supported decision-making in one way or another. And so it’s important that, the individuals in our lives with disabilities understand that, that is not a weakness. This is something that we all use and need in our lives.

[00:20:33] So there are different guides available from Charting the LifeCourse. And we’ve included these three guides that are going to be in your handouts. The questions in these handouts include a simple description of each domain. And the questions to consider when considering tasks in each specific domain. So I realized that, you know, not very in depth, but you are going to have all these guides available to you to look at and really comb through. And they really are wonderful at helping kind of focus on some questions that need to be asked.

[00:21:13] Stella: You know Kellie, I think it’s really important to note here that there are so many things in these guides that can be a little overwhelming. So I would recommend that, you know, someone, if a parent’s looking at it, you know, I would only look at the one right now that’s really meaningful to you. And so like right now, if my son was exiting high school or close to it, I would look on the transition. I would look in the guide that says transition to adulthood.

[00:21:40] My son is 24, so we’re actually talking about independent living and things like that now and so I’m going to look at the one and focus on adulthood. And so then on the aging one, you know, as they get older and we try to figure out what we’re going to do when that happens and even, aging yourself that is a good one to look at then. So I think that’s really important to know that you’ll have these guides available, but you don’t have to know them all right now.

[00:22:07] Kellie: Absolutely. Absolutely. So does anybody have any questions right now before we really dive into exploring decision-making?

[00:22:23] Stella: I don’t see any questions right now, but I’ll let you know if one pops up.

[00:22:27] Kellie: Sounds great. Okay, so exploring decision-making. This is also something that you’re going to have available to you. I cannot explain how much I wish I had had this when my son was about to turn, you know, when he was about 17 years old and we first started talking about guardianship. And I’ll be completely honest with you, I had never considered guardianship until someone at the school, during an IEP meeting, told me they thought I should pursue it. It had never ever entered my mind to take that step and many people are there exact opposite. You know, they start to think about those things when they’re their child is very young.

[00:23:19] However, I was in absolutely, I was absolutely in denial about really what my son needed and, I mean I hate to say that, it’s almost shameful to say that, but because his disability is invisible and because it, I don’t even know how to explain it. It’s not just, you know, one certain thing, it is so many things in his life. Because his executive functioning is almost nonexistent. So, but he still, you know, walks and talks and reads and drives and does all these other things, so people often get, you know, I think that he doesn’t have the issues that he does.

[00:24:12] And I, as a parent and his job coach, we’ve had this discussion as well, you know, because he does so many things without a struggle that we forget about some of the struggles that he does have. So this document would have been very, very, very helpful for me. And this can be completed by the individual, by family members or different support persons of the individual of whom guardianship is being considered. So we’re going to break this tool down into some different sections.

[00:24:47] The first section is, this is the section for the information of the person filling out the form. So not necessarily the individual, that may or may not need a guardian. But there’s a place for that person’s name and their relationship, and then how long have they known that individual. This can be filled out by as many people as necessary, because many of us have different views on a situation.

[00:25:15] If I fill this out for my son it is going to look incredibly different than what it would look like if he filled it out for himself. So it’s, I think it’s a great idea to have several of these available and have different people really just chime in and give their opinions about how some things are going and to gain an accurate picture of what that individual’s needs are.

[00:25:45] And so then under that you see the different levels of support. So these column headings are going to serve as your answer for the questions on the form. The first one, in blue, is something that the individual can do on his or her own without needing assistance from anyone. The second column is something that the individual could do with the support, advice and counsel of others that know and care about his or her best interests. And the third column, in green, is for things, it’s for things that the individual cannot do on their own, with the support and the council then others. So they need someone to make those decisions for them. So just kind of think of the green is probably where you may need to consider guardianship.

[00:26:45] So the next section is daily life and employment. So there are different questions on here, and you’ll fill in, you know, under which category they fall in. So can I decide where I want to work? Do I plan what my day is going to look like? Do I make everyday purchases such as food, personal items and recreation? Do I keep a budget so I know how much money I have to spend?. And do I make sure that no one is taking my money or using it for themselves? So those are  just a few of the questions included in that section. But they’re very, very important. And so you’ll know which box to select.

[00:27:38] And so the next section is healthy living. So do I choose when to go to the doctor or dentist? Do I decide what doctors, medical healthcare clinics, hospitals, specialists, and other healthcare providers I use? Do I understand health consequences associated with choosing high risk behaviors, such as substance abuse, overeating, high risk sexual activities, things like that? Those are all things that may be, we may not normally think about. But these are very, very important things to think about.

[00:28:27] Okay, so, you know, the questions go on and on through each of the life domains. So can I make choices about, you know, marriage? Do, you know, if I want to get married? And who I wanted to get married to? Or do I understand the consequences in consensual sexual relationships? Do I make plans in case of emergencies? Do I know who to contact if I feel like I’m in danger or exploited? Do I decide about how to keep my home or a room clean and livable? Do I make choices about going places? If you don’t travel often or if they do travel often, are they capable of making those decisions? And do I tell people what I want and what I don’t want? And do I decide who I want to inform, or who do I want to disclose my disability to?

[00:29:35] So there’s so many different aspects in each of these life domains and I just I can’t praise this enough. So I highly encourage that you download and really, really look at that one.

[00:29:53] And so something else that we’ve included is the Charting the LifeCourse portfolio for supported decision-making. The portfolio for supported decision-making contains different tools to organize and communicate what you may have learned on the exploring decision-making page, prior knowledge, or even just personal thoughts and options.

[00:30:24] And then you have the integrated support star. That’s the first portion of your portfolio for supported decision-making. And just like in last week session, the integrated support star is broken into different areas or categories with the individual in the center.

[00:30:44] The areas are personal strengths and assets for supported decision-making. So let’s look at this starter star, quote unquote, so you can kind of get a better picture of what the integrated support star will look like once it is filled out.

[00:31:12] I believe it’s the next slide Stella, there you go. All right. So up at the top, you’ve got decision-making. That is the ability to communicate wants, needs and wishes. So, and that can be whether it’s traditional, sign language, gestures, or using a communication device, just are they able to communicate those wants needs and wishes?

[00:31:41] Money management or I’m sorry, these are in personal strengths and assets for supported decision-making. I think I forgot to say that. So many management does the individual understand the concept of money? If they do, yes, this would go up there.

[00:31:58] And then personal safety. So I know my address, phone number and other contacts. I carry my ID. I know what you do if there’s an emergency or disaster. And I have a ready bag for emergencies. And those are just some examples of strengths and assets that you could have.

[00:32:20] So some technology for supported decision-making, maybe a smart phone, a home phone or computer. Online banking or a debit card to manage money.

[00:32:33] And then personal safety, you may have a GPS enabled device, a personal safety device, remote monitoring, or computer or electronic locks.

[00:32:48] So, community resources for supported decision-making. So that could be your medical advisors, which would be doctors, nurses, maybe, you know, clergy or a life coach. A financial advisor or educational advisors, such as teachers and counselors. For money management some of the community resources may be a limited bank account, or a shared bank account, direct deposit and automatic bill pay. I love automatic bill pay. There’s not a better thing in the world, it’s as far as I’m concerned, just about.

[00:33:32] Personal safety, you know neighbors to rely on, police, the fire department, emergency medical responders.

[00:33:44] And then relationships for supported decision-making, personal contract or agency agreement. Maybe you have a general power of attorney or a power of attorney for healthcare. And then, you know, a joint bank account, or just close family and friends.

[00:34:08] And then finally you have the eligibility portion. And that those eligibility supports may look, like a service coordinator, a limited guardian, representative payee, a special needs trust. A stable account, personal care attendants or adult protective services. So all of those things can all help in supported decision-making.

[00:34:51] And so this is the next sheet in that portfolio. In here the individual will communicate what is important to them when making choices and what they feel others think is important. How they learn, what supports work well for them, as well as how to motivate and encourage them. So we may think that we know exactly how to encourage our children, but what if they’re just being sweet and not saying, you know, mom, that really doesn’t work for me.

[00:35:22] It’s important that I learned to voice what works for them, what doesn’t work for them and what kind of support they think is needed. I know a lot of us probably get pretty angry when we feel like people are throwing their 2 cents at us, when we really don’t want it. Well, our kids with disabilities are no different. So just keep that in mind. It’s important for them to communicate what they want.

[00:35:49] Stella: Kellie, we have a question.

[00:35:52] Kellie: Okay.

[00:35:53] Stella: It says, my child is a preteen how can I get info on what we should be working on now to make sure that he has as many options, hang on I just clicked off of it, make sure he has as many options, well, dear me, I can hardly see it now, what did I do? As many options as possible when he comes of age?

[00:36:18] Kellie: Okay. Well, the first thing I would do is I would, there are also, and we can send you the link to this if Stella or one of the other staff persons wanted to make a note of this, we could actually send you the guide for the younger adults. So you can start to be, you know, start looking at that. And then the KentuckyWorks website. We can also send you, some information from them. They have like checklists that are phenomenal, that really tell us, you know, what we could or should be looking at, in different age groups. So we would be happy to send you that information.

[00:37:05] Does that help?

[00:37:08] Stella: So I think that was perfect. Thank you.

[00:37:10] Kellie: Alright. Okay. So, does anybody else have any questions?

[00:37:16] Stella: I don’t see anything else right .Now

[00:37:22] Kellie: Okay, we’re good. All right. So continuing on with the life trajectory for supported decision-making. Let’s see, so again, this is just, this is the third and fourth pages of the life trajectory, I believe. It might be the first and second, I’m sorry I can’t remember. But anyway, so these are the, this is the beginning of it, actually, I’m sorry.

[00:37:59] So we learned about all of this last week and it’s a little bit different now, but it’s going to be completed the same way. So we’re going to use past experiences to communicate what the individual deems is a good life, versus a life he or she does not want. So this worksheet could be a little bit difficult and could take some time to complete, but we all learned from the past that is, you know, all of us do. We usually learn by trial and error, that might not be the best way to learn. I always tell my kids, life’s too short to learn by trial and error, but they insist on making their own mistakes just as I did, when my mom told me the same thing as well. So they’re no different, we tend to learn from past mistakes, past failures or past relationships. And then we determine, well, I don’t want that to happen again. Or, you know what? Maybe it didn’t turn out the way I wanted, but I wouldn’t change it. Or maybe that’s exactly what I want for my future.

[00:39:11] So being able to determine, you know, things that have happened in the past, general knowledge, and different opportunities can really help your individual decide what they want their life to look like.

[00:39:28] So the first portion of the trajectory is on our next slide. And it’s important that you start there. so there’s kind of a method to the madness, so to speak. You definitely want to start here again, like I said, this is regarding past life experiences. So, and this is going to be the first step in helping them learn to communicate what they want versus what they don’t want.

[00:40:02] So the questions on this are, you know, what helps me understand the issues and my options? What has helped me communicate my preferences, choices, and decisions? What has helped me follow through on my choices and decisions? And what were past barriers that made it hard for me to understand, communicate or follow through with my choices and decisions?

[00:40:31] So maybe you have an individual like I do who has a hard time understanding his issues. He understands what his options are, but he doesn’t, he’s not really able to weigh the consequences of his options as well as most. So what is going to help him understand those issues with those options? So maybe, you know, maybe there’s something we can do different. Maybe there’s somebody who can explain it better than me. Maybe it would be better coming from someone who’s not mom, who really, you know, he can be completely honest with. Cause you know, they’re not always honest with parents. I’m sure we all know. So, you know, just kind of thinking at it from that perspective.

[00:41:30] And then if they have ever communicated their preferences, choices, and decisions, you know, what has helped them be able to do that? And then what helps them follow through? But then again, you may have a son like me, who hasn’t communicated his preferences, choices and decisions, usually until it’s too late.

[00:41:52] And so it’s very important that we teach them the importance and that we give them the opportunities to communicate their preferences, choices, and decisions. Because being proactive is much better than trying to triage his situation.

[00:42:16] So again, be sure to start in the beginning, don’t skip around on this.

[00:42:24] And so the next portion, you will be completed with the vision for what I want and what I don’t want statements. This information is critical in the life of the individual that is completing this, as he or she is telling the world what they don’t like, what works for them, what doesn’t work for them, as well as their vision for a good life.

[00:42:51] So, this is just think of this sheet as their voice. It’s very, very important and critical that they complete this themselves. So, do we have any questions about that portfolio? Again, it’s going to be available to you, for you to look at. And then of course you can always email us with questions after you get it, and you really start to dig into it.

[00:43:23] Stella: Kellie a couple of things.

[00:43:25] Kellie: Sure.

[00:43:25] Stella: Oh, yeah, just a couple of things, one thing personal, and then we also have a question. The personal thing, is what I ended up having to do with my information for my son, who’s 24, when we started really diving in to supported decision-making and discussing that is I had to start a notebook of, you know, these documents. And if you’re an electronic person, and I know Kellie’s really good about that, but, you know, once you complete the documents, you can scan them and have them available. I like a notebook, I’m still the old school way of where I can go in and update as needed because there’s some times, you know, I have to change some stuff or whatever, that’s just me. But it’s been really good. I keep a lot of important documents in it because I’ve got like his trust information copies of it, things like that. So that notebook is real important to have. It’s almost like that IEP notebook that I had when he was in high school. Now this is kind of like his adult notebook, so to speak, with lots of information, medications, different things like that. So that might be a way for families to, you know, that might be something we want to add to our thing of how we can help families create those notebooks like that.

[00:44:42] Kellie: Absolutely. And I think that’s an, I mean, I actually think that’s an awesome idea.

[00:44:50] Stella: And the other one is it says our situation is so complicated. Is there somewhere that I can get one-on-one help and talk to someone about my child’s specific situation?

[00:45:01] Kellie: You can always contact Kentucky SPINs, which once we learn your specific situation, we can absolutely help point you in the right direction as to who you need to speak with. There are, you know, there are offices that we can refer you to, or that we can reach out and get information for you. There are websites for tons of information. So we can absolutely help you. I highly encourage, if you have a certain situation and you don’t know where to turn, contact us, that’s what we’re here for, that is the actual definition of our job. So if you need help or assistance, training or information give us a call, shoot us an email, whatever, you know, whichever method of contact you prefer. Reach out to us and let us help you.

[00:45:59] Again, like I say, it’s going to be much better to be proactive. Because I can tell you, you’ve got, okay, so me and Stella, we’ve got two different, you know, situations here. I’m learning from past mistakes. I do not want families to make the same mistakes that I made. Now I may, I didn’t intentionally make those mistakes. Obviously, it’s why they’re mistakes. But I was simply uninformed. You know, Stella on the other hand, was very proactive and has, you know, she was educated and she did things in an amazing way. So you’ve got two different ends of the spectrum here.

[00:46:45] I highly encourage you to reach out, get educated, let us help you because it is much easier to do it right to start with, than it is to have to try to back up and fix it. Especially once if you start spiraling out of control, it’s really easy for all things to get out of control. And I mean, I’m really not attempting to preach at anyone, I’m  just saying, if you have specific a complicated situation, or you don’t know what to do. Just reach out to us and let us kind of help guide you through this. Because it really will save you a lot of trouble in the long run.

[00:47:37] Okay, so moving on. This is an additional resource that we’ve included. This is not a Charting  the LifeCourse tool, but it is something that can be used to solidify an agreement between individuals regarding supported decision-making.

[00:47:57] So, this —

[00:47:59] Stella: Kellie, just to add on to that, Kellie in Kentucky, we do not have anything that is a legal document regarding supported decision-making. So what we did with ours, and we’ll talk a little bit more about that in a minute, is we actually had an agreement drawn up and attached to our power of attorney, and then we had it notarized. So it just becomes something that we’ve agreed on as my son’s team of how we’re going to be using supported decision-making

[00:48:33] Kellie: Right, absolutely. This is not like a court ordered anything. This is just an agreement. Just like if I sign an agreement with you, if this is, you know, this is no different.

[00:48:49] So supported decision-making agreement says, this agreement must be read out loud or otherwise communicated to all parties to the agreement, in the presence of either a notary or two witnesses. The form of communication shall be appropriate to the needs and preference of the person with a disability.

[00:49:11] So my name is blank. I want to have people I trust help me make decisions. The people who help me are called supporters. My supporters are not allowed to make choices for me. I will make my own choices with support. I’m called a decider. The agreement can be changed at any time. I can change it by crossing out words and writing my initials next to the changes. Or I can change it by writing new information on another piece of paper, signing that paper and attaching it to this agreement.

[00:49:49] So, and this is also being provided to you, for you to look over. And so in the agreement, it has a supporter number one. And we’re going to see that on the next slide. So, and then the individual with a disability is going to name that person, their address, their phone number, their email address., And then they’re going to check boxes of what that supporter is going to help them with. And there are, you know, lots of different supporters listed in this document and you can add as many as you need to.

[00:50:31] So because you have to think of it like a team. So mom’s going to be responsible for this. Dad’s going to be responsible for this. The job coach is going to be responsible for this. My case manager is going to be responsible for this. But this is your individual’s opportunity to decide who’s going to help them with what.

[00:50:55] And so it’s important for you to remember that independence, respect, and equality are values important to all people, not just people without disabilities, and not just people with disabilities. These values help define the concepts of independence and freedom as well as the right to make decisions for oneself. And because these rights are so valued in our society and something that most of us we give value for ourselves, the least restrictive alternative should always be considered before taking away a person’s civil and legal rights to make decisions for him or herself.

[00:51:37] The least restrictive alternative is an option, which allows a person to keep independence, freedom, and the right to make decisions for oneself as much as possible while providing only the level of protection and supervision that is necessary.

[00:51:56] Some examples may include being a representative payee or having a representative payee of certain government benefit checks. Having a joint bank account or advanced directives for healthcare.

[00:52:13] So we’re going to watch just a very short video, and it is actually Stella and Clayton story about when Stella had guardianship of Clayton and how his rights were restored.

[00:52:41] External Video: My name is Stella Beard, I am the Assistant Director for Kentucky SPIN, which is Kentucky Special Parent Involvement Network. We are the parent training and information center for the State of Kentucky. But what I’m actually here today for is I am Stella Beard who is also Clayton Carroll’s mom. And that’s why we’re here today. So I’m excited to be here.

[00:53:04] I was at a statewide transition meeting a few years ago, I think about four years ago. And I heard you talk about supported decision-making. You actually were there doing a presentation, and I kind of had that, aha moment listening to you. Because at that time, I had been Clayton’s guardian for about a year, but I was very intrigued and wanted to find out as much as I could at that time about supported decision-making. So you kind of got the ball rolling for me.

[00:53:38] Why did you decide to initially get guardianship for Clayton?

[00:53:44] Well, probably fear, I’m just going to be honest with you. Fear of the unknown. Fear of him not being able to make important decisions on his own. And also at the time, I really felt like it was the right thing to do. He had just exited high school, turned 18, and I was just a little fearful of what that future might look like without me in it.

[00:54:09] The first thing I would tell parents is to do your homework. Full guardianship is not the only option, but at the time it’s all I knew. It was all that I was told at the time. So I would think the main thing is to know all of your options, and then make that informed decision based on your situation.

[00:54:34] I had been Clayton’s guardian for five years. I realized at that time, during those five years, that he was always going to need additional assistance,. but I really began to feel like with the right support team around him, we could accomplish everything that we were currently doing without taking all of his rights away. And I wanted him to be able to marry and make important decisions on his own, for his future. But I knew we needed some supports in place.

[00:55:04] Why do you wish you had known before getting guardianship?

[00:55:10] I think I wished at the time, during that transition time, when he was in high school, that I had really pursued those other options and not made that decision so quickly. But I will say this, this is the field I work in, of course, I work with families who have kids with intellectual and developmental disabilities and help them throughout their special education, all of that on my daily work life. But when he came to my parent hat on, I did operate in fear.

[00:55:48] Do you want to share anything that you discussed with Clayton before you petitioned to get his rights restored?

[00:55:57] I think that fear of him thinking that mom was no longer going to be in the picture was what he was fearful about. So once we addressed those fears and he realized that nothing was really going to change as far as what his life looked like, he was more acceptable of the decisions. And, you know, I told him, I remember saying, you know, you’re just gonna have to sign more papers now than you did before.

[00:56:25] Can you tell us how you and Clayton are working to expand his circle?

[00:56:32] Sure. I think for myself, it has been stepping back more, but not stepping away is how we’re doing it. And encouraging him to reach out to others for assistance instead of to come to me with a question of something and my response back to him is, I don’t know, Clayton, what do you think? So it’s enabling him to begin to think on his own more, to handle choices on his own more, make decisions more on his own, but not me leaving the picture altogether.

[00:57:10] The one thing that I would like to everybody to really think about is, you know, we always talk about the least restrictive environment regarding education, and, you know, we fight for that all through their educational years as I did for Clayton. I wanted him with typical peers in school. I wanted him involved with everything else that someone without a disability was involved in. But as soon as they become that legal adult or the age of majority of 18 in Kentucky, we tend to strip them of all of their rights and we immediately go to the most restrictive, right away. And as I said, at the very beginning, it’s because of fear. And that’s okay to have fear.

[00:57:58] Know your options because this is a life altering decision, not only for you, but for the person. And it’s harder to have that guardianship reversed or those rights restored than it is to get it. So remember that and try not to just think in the moment. Think in the future and how this decision will determine that learned behavior, and cause that young adult to become totally dependent on you instead of allowing it to fail and learn from those mistakes. Because that’s how we all become forward thinking adults that we are today. You know we’ve learned from our past mistakes and it’s made us who we are today. And I truly believe that they deserve the same.

[00:58:49] [music]

[00:58:52] Kellie: Stella I really appreciate you sharing that with everyone. I think that is phenomenal information, and it is great to hear from someone who has been kind of on both sides of the fence.

[00:59:10] Stella: Absolutely you know —

[00:59:11] Kellie: So in conclusion —

[00:59:14] Stella: Oh, that’s okay. That’s okay. I was just going to say absolutely, and Clayton was very involved in that portion. There’s actually a separate portion of that, that’s Clayton’s part of it too. So we’ll have to share that sometime.

[00:59:30] Kellie: I would love that, as I’m sure most of our parents would as well.

[00:59:38] So in conclusion you have seen how Charting the LifeCourse tools can provide different ways to assist in determining the need and or level of guardianship or other supports that may be needed. You’re going to have in your possession a tool that will allow that individual to communicate their wants, likes,dislikes, as well as their vision for a good life.

[01:00:05] And then you also will have a quote unquote agreement that can be signed so that that individual and support team are all on the same page, because that really is so very important.

[01:00:20] We’ve included, obviously all of our references, and then we have a separate slide again, that is in you do it, you do have this PowerPoint and you’re going to have it emailed to you afterward. And all of these are clickable links and these are all our handouts, and papers that we’ve discussed today.

[01:00:41] Does anyone have any questions before we wrap up?

[01:00:47] Stella: Someone just said, these are great resources and documents. And is there somewhere I can go on the web and get more information like this? Which is kind of what this page is all about, Kellie.

[01:00:57] Kellie: Exactly, all of those pages, are like you can go to each one of those, you’ve got the LifeCourse tools, you’ve got Kentuckyguardianship.org, you’ve got supporteddecisionmaking.org. You’ve got kyspin.com. So these are all phenomenal places for you to get more information.

[01:01:23] And so if we don’t have anything else, I would like to invite you to our Tuesday Tips webinars. Those are every Tuesday at 11 o’clock. And then every Thursday at 11 o’clock, we have additional webinars. So next week we’ll be discussing part three of using the LifeCourse tools.

[01:01:40] For most up to date information and resources for individuals with disabilities, their families and the professionals that work with them during COVID-19 we have a specific webpage for that.

[01:01:52] And then please, if you haven’t already signed up for Kentucky SPIN enews. Those do go out on a regular basis, and provide you with all of our upcoming trainings and events.

[01:02:05] If you have any questions, please do not hesitate to contact us.

[01:02:10] And we would ask that you would please complete our evaluation that is going to pop up as soon as this closes.

[01:02:19] Stella: Thanks, Kellie. I think this was a great session today.

[01:02:27] Kellie: Thank you guys so much.

[01:02:28] Stella: I’m looking forward to part 3 Thursday. Is it coming up next Thursday our part three, right? Yes. Thursday, October 15th.

[01:02:37] Kellie: Yes. That’s perfect.

[01:02:38] Stella: So if you haven’t registered for that, go ahead and do that. And we thank you all so much and check out our Tuesday Tips. Next Tuesday, we are going to be talking about social strategies and friendship building. So we hope to see you all somewhere on the web next week.

[01:02:53] Have a great day.

[01:02:55] Kellie: Bye.