Life is about informed decisions. The question is - whose life is affected by those decisions? Whose rights are stripped?
In this episode, we are diving deeper into alternatives to guardianship, more specifically, supported decision-making. Today we are joined by self-advocate Jordan Anderson, whose entire life was uniquely impacted by an overnight decision to support his rights. We are also joined by Hezzy Smith, Director of Advocacy Initiatives at the Harvard Law School Project on Disability and proud sibling.
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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 that 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. I'm your host Lani Jennings-Hall. In this episode, we are diving deeper into alternatives to guardianship, more specifically supported decision making. Today I'm joined by self advocate Jordan Anderson, whose entire life was uniquely impacted by an overnight decision to support his rights. We are also joined by Hezzy Smith, Director of Advocacy Initiatives at the Harvard Law School Project on Disability and proud sibling. Tom Masseau, Executive Director of Disability Rights Arkansas is also back with us on this episode. Thank you for joining us today. Hello, and welcome back to Including You. We are here with our second part, talking about alternatives to guardianship. And I want to start off talking to you, Jordan, do you think you could introduce yourself? Tell us a little bit about your story?Jordan Anderson:
Well, thank you. I appreciate all of you guys that are on the podcast here today. And I just appreciate you giving me this opportunity. So I am 20 years old. First off, my name is Jordan Anderson. I am from the central part of Wisconsin. I'm the Youth co-lead on the supported decision making project with the youth voice, youth voice your choice project. We will got more on that later in the podcast, we'll probably talk about it. So Wisconsin was, three state, one of three states that got selected And really, I'm just so honored to be a part of the Wisconsin team. In 2020, the year of COVID. It was I maybe, I would say 2019, the year before COVID, I attended the self determination conference at the annual conference that our BPDD the center holds and is part of. And I do a lot of advocacy work, the developmental council here in Wisconsin, and I, my teacher saw that I had a passion for public speaking. And she knew that I wanted to do some sort of this during my life. And so she basically forced me to go to the conference. Needless to say, I've learned a lot. And one of the sessions I attended was on alternatives to guardianship. And that was the first time I heard about alternatives to guardianship. And literally, like the night before, I did not know I had a court hearing like that next day on the work I just got done talking about so it was a kind of like a blessing in disguise. And I basically told to my mom and to my dad, where I learned about and I did not know this is what the court hearing was about. But my mum and dad told it because they didn't even think I needed to go at first like they went in the morning. And then they came and got me out of school. And because they thought it was the same thing. They wanted to do some more investigating work, like learn more about supported decision making before they, before they made the decision. And needless to say, I'm glad they took my advice and we actually had to hire one of my dad's former work attorneys, because the person that we got appointed to the county wasn't able to fit my needs. So my attorney met, like a half an hour later, when they got out of school. And they did some drawing up, like, and more research about it. And I was prepared to answer questions from the judge and everything. And because I didn't know what they were gonna ask, apparently, before I got there, they said, I was incompetent. Because I got a guardian ad litem came to my house a couple days prior for the court proceeding, and asked me questions like, "What day is it? What state do we live in?" Basic questions like that, and I answered them all correctly, because I'm very knowledgeable when it comes to that stuff. But somewhere along the lines, he said, I'm incompentent. And then I went back to my court hearing, I went in the courtroom with one lawyer. And then my parents, and my lawyer just had a casual conversation, because I really enjoy sports and hunting. And I think that's what we were talking about. My dad's friend that he knows. I said, He's not incompetent, and then the judge came. And then needless to say, we didn't even get gavel in, but it was quite a experience. And I'm just glad my parents and everybody listened to me at the correct time. Because without that, I really like to vote and to make my voice heard. And with some cases with guardianship, not all but some cases, people lose their right to vote. So I just, that's very important to me. So that's another reason why I kept my right to vote. And I also like hunting, like I said before, but I know it's a long winded old story, but I like the quick version, even though it's really quick.Lani Jennings-Hall:
No, I actually have a lot of questions from that story. First off, I mean, that presentation that you went to, must have been some kind of impactful for you to you know, to take that home to your parents, if they knew they had a court hearing the next day to make this big change in your life to then you bring home this information of, hey, I had this presentation, let's talk and for them to make such such a pivot. I mean that that had that I can't even imagine such a such an impactful presentation. I mean, that you kind of touch on a couple of things. This these rights that you're able to maintain from this, this big change. Can you talk about some of those other life changing things that happen just from from this, I mean, this presentation, I mean, I feel like this was a big pivot in your life.Jordan Anderson:
Like this was the first thing that I really learned about this organization through this teacher. And I'm doing a ton of work with them. Now I sit on a lot of boards with them now, in the past three years, I probably met more people because my state and other states with this project, it's unbelievable. I never thought I would meet somebody from Georgia or Vermont or anybody like that. And it just crazy to think that and I'm just so happy and thrilled to speak about it and go across the state with numerous present occasions. I like the power of zoom, because the power of zoom makes me reach every, every, even across the United States, I won't be on here today with the power of zoom. So I just really appreciate that. Because if one person knows about guardianship, the whole will, and it might take some time, but the whole world might be better off. I know. supported decision making isn't for everyone. But I just want to make sure people know my story and people will educated before they make their choice.Lani Jennings-Hall:
Thank you for that. Jordan. I also want to touch on a little bit about your story. The part of it sounded like originally they ruled you incompetent and I want to I assume that this is some frustrations many people may struggle with maybe in attempting to get alternatives to guardianship. Hezzy, Tom, can you guys talk a little bit cuz yeah, I guess I should do a little introduction here. You are the director of advocacy initiatives at Harvard Law School Project on Disability. I don't know if you want to kind of talk a little bit about yourself before I throw you a question there. But I'm kind of feel like this is probably your expertise here.Hezzy Smith:
Sure. Thank you. It's a pleasure to be here. And it's, it's hard to be here in the shadow of Jordan, who's got a great story. And I'll try to do my best to not hold you back, Jordan. I am an attorney barred in the state of New York, and I am a sibling, an older sibling, I have a younger sister who has Down syndrome. And she has been a big inspiration for me throughout my life. And for the professional choices that I've made. Before starting work on at the Harvard Law School project on disability, I was had the opportunity to work for the supported decision making New York Project, which is the largest supported decision making pilot program in the United States, and heard lots of stories, some similar to Jordan's, where folks get information at the right time in the right place, and are able to make informed choices with that information. And others who say, Ah, if only I had known. And I think, you know, one barrier to using alternatives to guardianship that comes up repeatedly is exactly what Jordan, you know, kind of put his finger on, which is that notion of accessing easy to understand information about what alternatives are and what they're not. Which is really, really important. And on the same, kind of the flip side of that coin, lots of people have lots of misinformation about guardianship. I've heard very strange stories where people will say to me that their doctor told them that if they get guardianship, they can keep their kids out of jail, if they ever come into contact with law enforcement, and it's not true. And I don't know why doctors are giving legal advice. I wouldn't take my stock tips from my mechanic, so why am I getting legal advice from my doctor? And so it's not just kind of getting good information about alternatives out there, but also pushing back against and correcting. You know, the misinformation out there about what guardianship does and does not do. And Jordan is absolutely right, that guardianship, depending on your state can affect your right to vote. And given Jordan's you know, hobby of hunting, it can also affect your right to access firearms. And so there's a lot of ramifications that people might not be aware of when they go looking for guardianship and they might be doing it based on not a lot of information. So I think, you know, we got we got to do two things. We got to wise up about alternatives and like Jordan said, get that information into the hands of folks. So one really good resource that the Center for Youth Voice Youth Choice has put together is a state profile of all 50 states and the District of Columbia of the alternatives to guardianship that are available in their state. It's available on the website: youth-choice.org. And just making that information available all in one place, because there's a little bit of difference from state to state about what certain alternatives do and don't do. But the other big thing, which is sometimes harder, because a lie will get around the world faster than or in the time that it takes for the truth to lace up its shoes, kind of countering misinformation and misconceptions about what guardianship is, for a lot of folks, it's, it makes sense to them, that they would continue to have a very important and prominent role in their child's adult decision making. And so from, you know, kind of a caregiving protective perspective makes a lot of sense, oh, yeah, I will, you know, go to the court and get the permission and fill out the form, lots of families have to fill out a lot of forms, in order to get the don't make a whole lot of sense all the time, in order to get the things that you know, their loved one needs and wants. And so when folks have been conditioned through most of the special education and accessing benefits, and that all those navigating all those systems to fill out forms, kind of the message that you need to get guardianship in order to do these things, you know, makes sense, on some level, and lots of times they're not given the same amount of information or quality information about alternatives. And so there's kind of this two front, you know, battle, right, not just pushing good information about alternatives out there, but also countering that information about guardianship that you know, people are using to make decisions that have long term consequences.Lani Jennings-Hall:
I think you hit like, the nail on the head, people have absolutely been just like, put in this mindset of Oh, yeah, here's the this, this just seems like the the next step of what is expected, just after after years and years of just forms. And I've heard I've heard many times in like, just this just the education world of, it's just, it's a caregiving thing, it's the next step. And a little bit of time, I have been in this world of hearing these things.Tom Masseau:
And I'm so glad you brought that up. Lani and Hezzy. And especially Jordan, the competency issue is something that we experienced, we see a lot of here in Arkansas, and it's just a perception, you know, if you have a disability, you must be incompetent. Or you might not, you must not be able to make your own decisions. And that when you get to the age of 18, it's just so common here in Arkansas, that, you know, guardianship is to, you know, putting on a pair of shoes or whatever. I mean, it's just like, you get to that age, and boom, there you go. So trying to break that myth and Jordan, I'm glad you touched on the competency piece. And, and, and just having that conversation with somebody about your interest, but you want to do really brings a different perspective to it. And it's not one that we in Arkansas, see a lot of, it's just boom, you know, you're getting 18 You go right to court, without having that conversation with the individual of like, okay, so what are your hopes and dreams? What do you want to accomplish? Do you like to hunt? Do you like to vote? Because here in Arkansas, you know, since 2001, if you have a guardian, you can vote. So we're we're literally stripping the rights away of individuals with disabilities who want to be in the community want to participate, but because of that perception, it just doesn't happen. So we have a lot of work to do here in Arkansas to get people to have begun having those conversations with with individuals about it. What do you think that we can do here in Arkansas? Jordan, I know you've done a lot of policy work, and you testified in within Congress and different things. So what can we replicate here? What can we do here in Arkansas, to get people to change their minds about guardianship and alternatives to guardianship?Jordan Anderson:
Well, thanks for the question, Tom. That's kind of a loaded question, but I'll try to put it in simple terms. Well, first I don't know what your setup is, but the Wisconsin developed a Wisconsin board for developmental and physical disabilities. It, is, has very strong base with the legislative community and the particularly the Wisconsin Public Schools, the DPI. So we do a ton of work in our schools in trying to get the word out. Some schools don't necessarily follow through, like some schools, but it's worth, worth a try. And you just have to build, build, keep building and have outstanding advocates, like me, and several others, across the US that are passionate about things and want to make change for the better. So I just, I really, hope I answered that question. Okay. But, um, I just really feel like, it really takes time because Wisconsin's law, I believe we had a law in 2013. So if any, somebody had wanted to do supported decision making, it's really hard to reverse, like, supported decision making thing, once you are determined by the court, that you are under guardianship. And I just really wanted to stress that we're kind of in the same predicament for those who really want to. That's my next task, or next tour to talk to somebody how we can repeal that, because I know a lot of friends that, like in Wisconsin that didn't get the same information I did. And I just feel tremendously bad about that. Because the just at the same level, as I did, so I'm just fortunate every single day to carry on this work.Hezzy Smith:
Yeah, and I will just follow up on Jordan's, you know, suggestions about, you know, access to information. And one of the really unique things about Wisconsin supported decision making law is that it does require the Department of Public Instruction to provide information about alternatives to guardianship, to parents and students, as part of the transfer of rights process, which happens when the special education students reach the age of majority and continue to have individualized education programs under the Individuals with Disabilities Education Act. And that's really important that access to information piece, I would just add to that, that, and this is I think, you know, one of the big value ads of the Center for Youth choice and Youth Voice is that, you know, who are we giving that information to. A lot of times when we talk about making sure people are informed, the emphasis is kind of on parents. And, you know, while they are important stakeholders, and while a lot of times they are the initiators of guardianship petitions in court, so it's good to, you know, do some information, sharing with them, at the same time, whose life is affected, it's the person with disability. And so, I think it's very, very important that whatever information sharing happens that it also really targets and prioritizes getting good and easy to understand information into the hands of people with disabilities who might be part of a guardianship proceeding. And, in anticipation of that, just keeping them informed about what it means to make decisions as an adult here, your options, you can use none of them, you can use any one of them. Because at the end of the day, you know, if as a society, we have these questions about you know, the boogeyman of competence, who's competent, who's not, which is the wrong question to be asking in the first place. You know, we should be doing a little bit more to, you know, put people in a position to make informed choices about how they'd like to make decisions as an adult, rather than, you know, creating two boxes and trying to you know, sort people out and put them into one box and into another which is, you know, it's a fiction. And I think, you know, what I've seen in terms of policy is a little bit less of an emphasis on what self advocates want, from states' efforts to adopt policies or laws on supported decision making. And a little more about what, you know, well intentioned service providers, what well intentioned attorneys like myself, or family members might want from those policies and programs. And so I think it's really, really important for anyone who's thinking about doing some doing some good in this space, is instead of running to your legislator, get a group, find your local self advocacy group and your statewide self advocacy group, what have you, make sure they're really educated about what supported decision making is what other states are doing. Have a study group so that they're informed, and that they can kind of develop their own policy platform and come to their own conclusions about what their legislators and policymakers in their state should be doing. And, you know, I think, you know, from an objective perspective, some of the stuff that Wisconsin has done is probably going to make a really big impact. And it's probably going to make a lot of positive changes in a lot of people's lives. But from a process perspective, I think we really need to, as a community, be a little bit more thoughtful about what role are self advocacy organizations playing in defining the alternatives to guardianship and supported decision making systemic change agenda. And so that's something I think that this the Center for Youth Voice Youth Choice is really investing in educating youth, especially with disabilities, so that they are part of these conversations. But also, I think all of these organizations and everybody listening to this podcast should really be thinking,in my state, whatever supported decision making or alternatives to guardianship advocacy is happening. Is it self advocacy organization led? Or is it led by other organizations? Even if there are one or two self advocates that are part of a coalition? Is this led by self advocacy organizations? Because at the end of the day, you know, nothing about us without us should also apply to, you know, these changes that are coming down the pike?.Lani Jennings-Hall:
No, I think that's that's a fantastic, fantastic point as Jordan, do you have something to add?Jordan Anderson:
Yes. If I could just add quickly. Our Governor, this is related to guardianship. But our governor recently signed a bill, I think it was last summer here in Wisconsin, that is requiring anybody that's pursuing guardianship, that they have this specific training, and like, they look at other alternatives first, so that's another caveat. For people that are automatically most judges, some judges would want to just push guardianship right away. And that's gonna help us here in Wisconsin.Lani Jennings-Hall:
I also wanted to add on the on Hass point about the self advocacy groups. Tom, did you want to talk a little bit about Arkansas Alliance for Disability Advocacy group here at Disability Rights Arkansas?Tom Masseau:
Yeah, so the one of the things that we're doing here in Arkansas, we were funded by the Arkansas Governor's Council on Developmental Disabilities to bring together and form a project called as Lani mentioned, Arkansas Alliance for Disability Advocates. And their whole focus is to educate and empower individuals with disabilities on issues they face every day. So really looking at bringing people together and kind of bridging those gaps, whether it's the whether it's looking at forming self advocacy groups in the community, looking at high school age youth up to post secondary, to really educate people about their rights, and how to reclaim their voice. Because everybody has a voice. It's just some people's voices is not heard. So we're really we're really working in supporting self advocates across the state and getting them to reclaim that and to take a stand and take their space and say, you know, this is this is an issue that's important to us. So the AADA program is going to be key in pushing some of these issues forward here in Arkansas and also reaching out to, you know, Wisconsin and talking to the Wisconsin self advocates to say, what can we do in Arkansas to help support self advocates and get people more engaged in some of these conversations that that, you know, need to be had that's not happening here in the state? We're slowly building those bridges going forward.Lani Jennings-Hall:
All right, final question to either or, or both, whichever. What advice do you guys have for advocates trying to talk to their legislators, and even family members that are trying to create this change?Hezzy Smith:
So my advice is not necessarily to go running your legislators. There are some different examples of what some different states are doing with regard to changes to promote alternatives to guardianship. Some of the laws are better than others. Ironically, even though a lot of the disability rights community has been concerned about the lack of data. With regard to guardianship, we don't necessarily have a lot of data on which kinds of supported decision making or other reforms are most impactful. And so I think, in really important ways, and this is not to throw throw water, cold water on anybody's advocacy efforts, but to really think about what are the changes that you would like to see? What policies and practices need to change in order for those changes to actually happen, and then, who do you need to talk to in order to get those changes made, because I think it would be unfortunate if, you know, there was everyone running around doing a copy and paste of, you know, so and so state's law, because often, the first is not the best, the first crack is not always the best one. And so I think this is actually an interesting time to for advocates, whether they're self advocates, or whether they're allies, to do some research, do some soul searching, look around and try to learn, because once you get your supported decision making law say, it's gonna be a while, if there's something wrong with it to a legislator is going to pay enough attention to you to want to go back and change it. And so kind of pick and stick and do your research, before you make a pick, because, um, you know, some of the legislation, some of the reforms that have been happening, have been on the basis of data and experience through pilot programs that, you know, provide a blueprint or, you know, some sort of proof of concept before, you know, the law or policies are changed. And in other places, that hasn't been the case. And so, and I would say, it's also, you know, one other reason to not necessarily go run to legislature a legislator, is that there's a lot that you can learn about the kinds of changes you want to see by practicing around your kitchen table. As Eleanor Roosevelt said, you know, human rights start at home. And, you know, you don't need a law, in order to develop whatever tools you think you might need to get people trained, in order to whatever changes come, you know, breathe some good life into them, because at the end of the day, laws are pieces of paper. And, you know, would you rather have a good law and not so good people implementing it? Or would you rather have a bad law and good people, really, you know, working hard to make the most of that bad law. I think I would prefer the latter in most cases. And so kind of building those coalitions, getting people together, and making sure that you got a solid base, and a solid understanding of what kind of changes you want to happen and to be really strategic about it. Because, you know, this isn't kind of like guardianship, you know, going for systemic reforms. You can't start+ select, I'm dating myself with that reference, but you can't just hit undo. If you you know, sign yourself up for something that, you know, you kind of regret later. And just one cautionary tale, I think is, you know, the mixed or uneven experience of folks with person centered planning. It's a great idea. It's a great concept. How many places have good laws that are followed is, I think, a really open question. And, you know, one, I think concern that everyone should be thinking about. And this was told to me by the President of the Self Advocacy Association of New York State, Tony Phillips, is that he never wants supported decision making to become just another program, in his words. And so how do we prevent supported decision making from, you know, for example, becoming just another Medicaid reimbursed service. And we want people to be supported to do support and decision making and explore all the options out there. But what kind of guardrails and firewalls do we need in place to make sure that, you know, the promise of these developments doesn't get lost in the shuffle when it comes time for things to be implemented that a large scale? So I would just kind of saying some words of caution, you know, learn about what reforms you want form alliances and good networks, and then maybe think about, you know, second generation problems that might arise once you get what you think you're looking for?Lani Jennings-Hall:
Jordan, what would you like to add to that?Jordan Anderson:
So I agree 100%, with Hezzy. And I just want to just briefly touch on one or two points. I just, like Hezzy said, don't necessarily go run to legislators unless its the last option possible, because once you go to your legislator, like, I've been trying to get ahold of my legislators for the past, like, how many months and I'm finally getting to meet with them, like, in a couple of weeks. So they're really busy. And you better have some concrete issues, that if you want to bring up to them before you go, because they're really busy. I know they're voted in, but I guess, touch on that. And, also, just keep spreading the word about alternatives to guardianship. Just, like I said before, and multiple times, a guadianship isn't for everybody. But if we have people making their own choices that are disabled, I feel much better, because people with disabilities are just like everybody else. So I really strongly push for people, if they're capable, you know, make the choices that will better themselves, I say, go ahead and pursue alternatives to guardianship. And once again, if you are interested, to learn more about the project, please reach out to the podcast creator and they will give you our contact information. And I would love to collaborate with you. And if you have any questions, I will be happy to answer them. And I'm just happy and honored to be here because I have a very powerful story. And I'm trying to change one person's mind at least, and making them aware of alternatives going cheap, not just the 11th hour and I was this close to not getting my rights that I was able to have right now. If I didn't go to that conference, and stuff like that, that's why I'm on so many disability boards, and so many other things in that why I'm just having that you guys gave me this opportunity to speak with you guys today because alternatives to guardianship are very unique them. And not many people in the disability world are elderly. People know but they know if somebody's been affected by it. So one at a time. We're going to make people aware of it. Thank you and I hope you enjoy this podcast.Lani Jennings-Hall:
Thank you, Jordan, Hezzy, and Tom for joining me today. And Jordan, thank you for sharing your self advocacy journey. Make sure to check out the show notes for additional links and resources from today's show. At DRA, we envision an Arkansas where people with disabilities are equal members in their communities and can dictate their lives through self determination. And as made clear in today's episode, we can't create that change without bringing self advocates to the table. If you're interested in more information, make sure to subscribe to this podcast and visit our website.