Including You: A Disability Rights Arkansas Podcast

Fears of the Unknown: Alternatives to Guardianship

• Disability Rights Arkansas • Season 1 • Episode 1

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Today we are talking about changing mindsets and allowing everyone the opportunity to succeed or fail. Guardianship refers to the legal role given to an individual to manage the personal activities or resources of another person who "cannot do so on their own." What happens when we shift the conversation from complete control over someone's life to supported decision-making?

Guests: 

  • Sarah Carmany, Self-Advocate of Michigan, SABE Board Member, Youth Ambassador Program Trainer
  • Mike Thornton, Self-Advocate & Youth Ambassador Program Trainer 
  • Tom Masseau, Executive Director of Disability Rights Arkansas

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Lani Jennings-Hall:

At disability rights, Arkansas, we are focused on guidance for people with disabilities on how to navigate your rights, things that help with your everyday life, and how to navigate the complex systems of how to get the support you need. In this podcast, we bring that information directly to you the listener on things like accessibility questions, career and care, and even the nuances of love life with a disability. Today we are talking about changing mindsets and allowing everyone the opportunity to succeed, or even fail. I'm your host Lani Jennings-Hall. In this episode, I'm joined by powerhouse self advocates, Sarah Caramany and Mike Thornton, as well as Executive Director of Disability Rights Arkansas, Tom Masseau. Sarah Carmany is a self advocate of Michigan, a SABE board member, and a Youth Ambassador, program trainer. Mike Thornton is a self advocate and Youth Ambassador Program trainer. Tom we're gonna kick it off today with you talking about the big picture. So what is guardianship?

Tom Masseau:

Yeah, thanks Lani. So guardianship means obtaining the legal authority to make decisions for another person. So essentially, it's a legal process that's used when a person can no longer make or communicate safe or sound decisions. And it's done through the court process. Your family member, your friend, or whomever it may be, will petition the court to take all of your rights away, because they fear that you cannot make the decisions for yourself. And then the court will make that determination and then you're, then that person will become your guardian. And it impacts an individual's rights to essentially live their life. You know, it takes away their right to decide where to live, to have you know whether or not they can obtain a driver's license, to have their own money to choose their friends, their religion, whether or not they want to work, and especially here in Arkansas, it takes away your right to vote. So when when when somebody attains guardianship over another individual, their right to independence is essentially lost. So it is a huge barrier for for people who want to live their life and make their own decisions for themselves. There are multiple alternatives that individuals can look at with regards to guardianship. So guardianship is not the be all end all there are alternatives such as a durable power of attorney, a psychiatric advanced directive. And a psychiatric Advanced Directive allows you to appoint someone to communicate your treatment decisions. If you're unable to make those decisions. There's also representative payees, someone to assist you in managing your finances. And the one that we want to talk about today is supported decision making, where support decision making is an agreement that you bring people into to help you make those decisions. You know, you weigh your pros and cons. And you you as the individual ultimately make those decisions. And you have a circle of supporters around you that if those decisions that you make, do not pan out, you have a fallback that they can assist you in looking at other other decisions.

Lani Jennings-Hall:

So what I'm hearing, I mean, these are a lot of rights that are essentially removed from an individual, what does, how do those conversations get started with the individual to to just say, you know, hey, we're How does, how does this start of we're going to put you under this guardianship, we're going to put an individual under a guardianship, how does how does that all begin?

Tom Masseau:

so what we're seeing here is that when an individual is going through the school system, so essentially, you know, when someone turns 18, we're seeing that a lot of parents and educators are looking at educators are actually encouraging parents to go to court to obtain that guardianship for fear of losing control or losing a way to communicate with their loved one. So the individual or the family member will go to court thinking they're doing the right thing, because they want to stay involved in their and their loved ones life. But essentially what they're doing is they're stripping that individual, all their independence in their rights. And, and not allowing that individual to make those choices that, you know, you and I and everybody else can make those decisions. And if we make the wrong decision, it's all part of life is is what we do. So you're actually taking that right away for somebody to fail and make the wrong decision and learn from it. To move on.

Lani Jennings-Hall:

That that fear of failure that everyone has has the right to do. It's just that's crazy to me. Sarah, I want to throw it to you. I know you have some unique experience here.

Sarah C.:

well I just had a thought to hear when he said that. It's like the non-disabled. There's like two sets of rules the non Disabled can make mistakes and everybody doesn't get on them. But when a person with a disability makes a mistake, it's like a life sentence, not a life lesson.

Lani Jennings-Hall:

Yeah. I think that's a great point. I mean, why does it have been if there has to be a line drawn in the sand you know, you know, the you cannot have that that right to failure or to succeed, frankly, I mean, it does. I don't understand why there has to be a line. And along this vein, Sarah, can you tell us a little bit about your story? I know you are, you do have an alternative to guardianship. Can you talk a little bit about your journey?

Sarah C.:

Yes, my name is Sarah Carmany. I am from Kalamazoo, Michigan. And I, I have I my own guardian, I live on my own in my own two bedroom apartment. And I do have a rep payee. That helps me manage my money, and basically thankful that I have her. Because she does help me budget out what how much I'm going to spend on food and how much I'm going to spend for other things, too. And basically helps me and then I also, she also helps me make sure my bills get paid, too.

Tom Masseau:

So Lani, if I can jump in and answer a question. So Sarah, you're very humble. And you're a very strong advocate in Michigan. And one of the things that as a member of the Self Advocates Becoming Empowered or SABE board, you share your experience of growing up with your with your family, and and what you did and what your what your parents taught you with, like IEPs and different things. Can you talk a little bit about that? And how you gained your in how that independence came about?

Sarah C.:

Yeah, well, I know when I was in elementary and intermediate, my mom and dad would go to my IEP, but we always, even mom and dad and all of us would always even us kid would go with mom and dad to meetings, like if there was parent teacher conferences. We were always there with mom and dad. And then and we always went to our IEP together and up until I got into junior high. And then that's when mom said, Okay, I'm not going to another IEP because mom felt like the teachers were analyzing her and she didn't like that. So she said she wasn't going to another IEP again. But mom and dad were always invited and my dad worked.

Lani Jennings-Hall:

Talk about the significance of going to this IEP meeting. Because I mean, that is a daunting experience in itself. I am obviously not as well versed on, I am just beginning to really learn. I mean, how big a piece these IEP meetings are. I mean there's a lot of players at the table of IEP meetings. I mean, do y'all want to talk a little bit? I mean, you two are gonna know so much more about it than I am talk just, I mean, just just all the players at a table in the significance of being at the table?

Sarah C.:

Well, I think also my parents didn't understand really what an IEP meeting was. All we knew is, it was just a meeting that we had that the school says we have to have yearly, I didn't really know it was wild, or anything. I don't think my parents even understood that. And but it is a meeting. It's an individualized plan, education plan, planning meeting. I think that's what IEP stands for. And basically, it's where people with special ed, there's teachers and the parents and any other staff up was that's involved in the kids is life or the child's life, come together along with the child, and they make plans for how they're going to complete the school year.

Tom Masseau:

So Sarah can, so when your parents stopped attending the IEP meetings, did you continue by yourself? And how did that and how did that make you feel? Because you essentially were your own advocate. And so, how in front of that point, what did you how did that make you feel?

Sarah C.:

Um, I kind of didn't really understand the meetings well, but I did the best I could with what I could do. And so basically, there were some decisions that are made that I may not have liked, but I guess it's to help me get through the school year.

Lani Jennings-Hall:

Hey Sarah, is that really when those conversations started about self advocacy and self awareness and those alternatives to guardianship? Is that really when that that journey and those conversations started?

Sarah C.:

Well, my mom growing up, my mom always taught me and my brother to make our own decisions for ourselves. Like, she would ask me what she would let us make decisions as to what we wanted to wear, she would also name the choices of what we may have wanted to eat for breakfast. And, and you know, things like that. And that added up to also as we got older, we started doing some chores. Like when I was when I was eight or nine, I started wiping a TV screen off. And then as I got older, I did the dishes. She started letting me do dishes at a young age. And then when we got into our teens that went like 12 show, that was how old I was, when I first started trying to cook. She let me try to cook for myself, I had a hard time with the stove, because it was one where you had to turn the gas on the light the match. That was scary. i For the longest time. I had a hard time doing that. But then one day, I got the courage to do it. And mom and dad and my brother, all told me, how am I going to eat when I get older? Because I was so scared of the stove?

Lani Jennings-Hall:

Well, it sounds like you made it work.

Sarah C.:

Yeah, it did.

Tom Masseau:

So well. So when you started cooking, and when you when you're when your mom started giving you out and your mom and dad started giving you all these things? How did that make you feel? And how did you when you were 20? as you got older? How did you maintain? Or how did you direct your make your own decisions? And because you were pretty much independent at that point, right? Right. Yeah.

Sarah C.:

And then Mom would let us also help us with chores to like, when I was about 12 years old, I remember going into laundry mats with my mom and me and my brother both did and we were so excited. We mom sat down and we did the laundry. And I guess that just led into more decision making. I was taught at a young age to to make this decision. And even when I did make mistakes, mom would always encourage me and if my dad started yelling at me, he said, No, don't don't deter me from stopping because I've got to learn. That's what mom would say.

Tom Masseau:

And say, I think that's an important point. You know, when we're talking about guardianship, and you know, everybody makes mistakes as an individual. And I think you said it, you know, you have a saying. What is it life's mistakes? What was it?

Sarah C.:

life? I gotta think of it too. life. Life mistakes shouldn't be a a deterrent. It should be a life lesson, not a life sentence.

Tom Masseau:

Yes, yes. And I think that's important, because everybody makes mistakes. And everybody has learned from those. And so, you know, as you were growing up, it worked. And so what are you how are you living your best life now without a guardian? What do you, what are you doing right now?

Sarah C.:

I actually working. I'm working on trying to, to maintain jobs, skills for different jobs. And I also want to learn how to drive. And I do, I don't have a guardian because my parents are deceased. But I have what they call a circle of support, which is people in my life. People from like the ARC and the agencies to help me out and my payee and my caseworker and whatnot. We come together to meet and once a month, and we have a circle meeting where we discuss goals and we try to work and trying to achieve them.

Lani Jennings-Hall:

And Sarah, you and Mike are both part of the Youth Ambassador Program, correct? Mike, do you want to tell a little bit about what the goal of this program is and what you guys do there?

Mike T.:

Well, the goal of the Youth Ambassador Program is the project is to teach supported decision making and other alternatives to guardianship. We And to the youth from several states, our first group of states was this, Wisconsin, Vermont in Georgia. And they are about to truly wrap up their project. We've had two months of presentations from Georgia and Vermont, and coming into January in the state of Wisconsin will, or the youth from Wisconsin will present on projects that they worked on, to talk about supported decision making an alternatives that they've learned about and want to be more involved in. Our second group of states started several months ago, and they're into the monthly check ins in Oregon, New Jersey, South Carolina, Indiana and Michigan. And they are just now beginning on a 12 month cycle of presentation or learn of learning more, and about what they've learned throughout the 12 weeks. We we were doing it 16 For the first group and we cut it down to 12. They they're learning more and then after 12 months, they will start presenting on their process. And we will have a presentations by each of those states. That's what they learned about the differences in between supported decision making and guardianship and other alternatives like Tom mentioned earlier, Rep Paee, and several others. My mom, my mind is slipping me right now. So

Lani Jennings-Hall:

Well, I think that is a really good point that you made that guardianship is different, and in different sites and every state is working towards towards different goals. How are the other states working to change the mindset from guardianship to these other alternatives? I know this is the goal of this program, how are these other states working working to change this mindset?

Mike T.:

Well, some of them already have alternatives to it, and some are working to talk to their states in to talk about putting supportive decision in place, or alternatives that are, don't put someone under total guardians, and this if they don't, sometimes it's like all or nothing. And if they don't have their alternatives, it's important to for people to be able to make choices, because we all learn from from making choices. And that's what they're working on. The youth have worked on presenting projects and that can present to others and their state's done one of one of them have done a book talking about their life and what sources they made. Some of them have done videos. Youth from Georgia, Derek, he's done. He does drawings, like meaning facilitation drawings that talk about what's going on. So he can use those drawings to talk about what guardianship is, what supported decision making is and things so that he was gotten to meet him a few weeks ago in at a conference and he spoke about and sat him in and other youth onboard that talked about how they're using things to also help in making a business of it. So that's a little bit of how they're using their projects. And thanks for reaching out to their states.

Tom Masseau:

Yeah, sorry, like, so one of the things that I find interesting is that, you know, all of these other states is, and Sarah you being up in Michigan and Mike, you being a Trainer for Youth across the country and trying to get alternatives of guardianship to allow people to maintain their rights without and have them make their own decisions. Yet here in Arkansas, you know, we have nothing but guardianship. I mean, as soon as somebody gets to the age of graduation, they you know, automatically, you know, chances are you're going to become under guardianship. So, sir, I find your experience, you know, growing up and your parents allowing you to attend your own IEP meetings and making those decisions and learning from those mistakes. Very helpful, that we can, you know, talk about here in Arkansas, because that's far and few between for a lot of self advocates, so I'm wondering what what are you what have what is what is self advocates of Michigan doing to look at alternatives to guardianship and what are you doing, you know, with advocating and legislation and just talking about alternatives to guardianship in Michigan. So Oh, I guess my question is, what advice do you have for self advocates in Arkansas? To advocate for alternatives to guardianship?

Sarah C.:

Um, that's a good question. Um, well, I guess I can say is tried to join an advocacy group and work on the guardianship issue. Work on trying to change people's mindset from wanting to just put people with a guardian. And, and try to say, hey, there's other alternatives, besides just putting people with a guardian. I think and we're, we probably have a lot of work to still do, because I think the idea has been around a while, but it's just trying to get people to change their mindset. And basically, that's not always easy. And sometimes it takes a lot of advocating to do that, and years of advocating to do that.

Tom Masseau:

Right. Yeah.

Mike T.:

Can I add something there? There's a lot of misunderstanding to on what supported decision making is and is not. So I think a lot of that has to do with education on what supported decision making is.

Lani Jennings-Hall:

Yeah, I think you're right, Michael. And I think, Mike, question for you. What advice do you have, I know you're, you're a strong self-advocate here in Arkansas, you know, what advice do you have for self advocate advocates? Or even you know, families going through this process? Or are you know, maybe you're wanting to talk to some legislators? What advice do you have?

Mike T.:

Well, my advice would be first off to research, the difference between guardianship and alternatives to guardianship, supported making or whatever, Rep Payee, so that you can understand what it does and what it does not do. Also, it allows your your child to speak and, and learn from them what what they would like, because there they are the biggest person that should be the most important person in the room. And as Sarah has done, if you want to be in the room for an IEP, that's great. But take your child in the room with you so that they are the center of the room. And they're able to communicate, let them communicate their needs and wants. Because that's something I never I had speech therapy as a child and everything. But I don't remember ever, ever needing an IEP. But if I would have needed one, it would have been very important from now that I'm an adult to know that I sort of had a voice in it. I do think that there needs to be more communication between people with disabilities as to here in Arkansas as to what's important on self advocacy, and supportive decision and making choices and being able to learn from one another because we need to support one another period. That's one thing that supported decision making is sometimes we support one another,

Lani Jennings-Hall:

you know, Disability Rights Arkansas, this is definitely one of our our points that we are hoping to work on with legislation this year, what can we do? What is Disability Rights working on?

Tom Masseau:

You know, I'm going to kind of blend what Sarah's advice and Mike's advice together is. I think we in here in Arkansas need to need to change the culture. And we need to shift the conversation from one have complete control over somebody's life, to one that allows an individual to make decisions. And I really like Sarah's a quote and we might use this going forward that mistakes are a life lesson, not a life sentence. And I think that's important as we go forward and to change the mindset of those people who think that just because an individual with a disability, that if you have a disability, you can't make any decisions whatsoever, that I need to have complete control over you. And I think that's, you know, not the right attitude or right things that we need to be talking about. And so Disability Rights Arkansas, we're going to be pushing for alternatives to guardianship, one that outputs the individual in control of their life with those circle of supporters around them. You know, similar to what Sarah was talking about. You know, and she has a circle of friends and supporters around her where she meets monthly. I think that's something that we need to be talking about here in Arkansas, and getting rid of those myths that people think that if we open up and provide alternatives to guardianship for everybody, everybody in you know, is going to revolt, and there's going to be chaos in the in the state of Arkansas. That's not true. I think we need to, you know, if I had my way, I would just say, let's just do away with it. And a lot of people make decisions, you know, that's what they do. And especially, I think, with regards to voting, you know, here and here in Arkansas, you know, I mentioned that if you have a guardian, you cannot vote?

Sarah C.:

Well, I just think that there's, and I know, this may never happen, but I think it should be allowed where, wards are allowed to learn autonomy, and prove to a judge, or a lawyer, that they can keep their autonomy for a time, and then decide based on that, whether they should need guardianship or not. Because each individual does have different needs.

Tom Masseau:

You're absolutely right, Sarah, and I think, you know, everybody is, everybody is an individual, and everybody has their own needs. And, you know, everybody should be able to explain, you know, what they want in life and how they're going to get there. But I just want to go back to the voting piece. And because it's, it's critical, and that it is a constitutional right for people to have it to be able to vote, and to suggest that just because somebody has a disability, they they don't know who they're voting for, they can't make those decisions. You know, I look back, and we have many college students and grownups, you know, across this country, that have no idea what's happening in the political realm, or what issues are happening. But yeah, they're able to vote. And I can assure you and all of the self advocates and people disabilities that I've spoken to, they are fully educated on what's happening, because the issues that are being discussed here in Little Rock, whether it's in Lansing, whether it's in, you know, in Washington, wherever it may be, they have a direct impact on their lives. So they're going to be actively involved in these conversations, whereas college students and adults whomever, yeah, I like this person, I like that person. So I think, you know, we need to go back and have that conversation of, you know, mistakes are life lessons, not a life sentence. So so I'm going to be borrowing that for quite some time. So thank you, Sarah.

Lani Jennings-Hall:

He'll end up putting it on his board. But does anyone have any, any last minute comments you want to add?

Mike T.:

My comment would be when it comes to people with disabilities, listen to the person and let let their voice be heard. And by you. That's too often people with disabilities are not valued in Arkansas or anywhere. Because they think, because someone has a disability, they do not understand. Even those were just physical disabilities. Some people do not value them because they think just because they don't know what they're doing.

Sarah C.:

And also, another thing too, is, we're have to also try to undo the myths about alternatives to guardianship because there are myths to alternatives to guardianship. Like, if I, you can correct me if I'm wrong, Tom. Doesn't isn't there are people that think if you do alternatives to guardianship, that there would be like, chaos, or that, that there will be no order? Yeah,

Tom Masseau:

yeah. You know, some of the arguments, this is a great point, Sarah, because some of the arguments, or some of the myths that were happening here in Arkansas, when we were talking about alternatives to guardianship was that for individuals living in institutions, that if we, if we had enough, if we were to be if we pass, alternatives to guardianship, or supportive decision making, that all of those individuals in there would revolt. And and and say, This is not where I want to be, I want to move into the community, as if that's a bad thing. But they, you know, that was the myth behind it, that we can't allow that to happen. So that was just one and I'm sure there's many others across the state here in Arkansas, and across the country about, you know, allowing people to make decisions on their own.

Sarah C.:

So it seems like every time we turn around, we're always trying to undo the myths.

Mike T.:

Yeah, it's all about the fears. Right?

Tom Masseau:

The fears of the unknown. Yes.

Lani Jennings-Hall:

Thank you for joining me today. And thank you for listening to our very first episode of Including You. If you need more information on guardianship, you can check out our previous webinar titled Guardianship: Rights, Remedies and Responsibilities on our YouTube channel. You can also find the link to this in our show notes. At DRA, We envision an Arkansas where people with disabilities are equal members and their communities and can dictate their lives through self determination. If you're interested in more information, make sure to subscribe to this podcast and visit our website.

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