Episode 10 Transcript
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00:06 [Allycia Wolff] Welcome to Focus on the Future, a future planning podcast for caregivers and families supporting people with disabilities. Focus on the Future is a podcast of The Arc Minnesota, a nonprofit organization advocating for people with intellectual and developmental disabilities. Hi, my name is Allycia Wolff and I’m your host for Focus on the Future and an advocate here at The Arc Minnesota. In this week’s episode we’re going to be talking about guardianship and supported decision making. This is a topic that often comes up when people are about to turn 18 and become quote, unquote legal adults, like we all do. And guardianship has long been talked about a way to help people make decisions about their life when they are not able to. So today we’re going to unpack this a little bit and talk about all the options that people have. Thanks for joining us.
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01:06 [Allycia Wolff] So where do we start in this conversation? Let’s start by taking a moment to articulate what kinds of decisions you’re the most concerned about. So you may want to write them down or just set some space aside in your brain. When you think about the future and your loved one making decisions, what brings you the most concern? It’s important to pick apart these pieces now because when you learn about guardianship and the alternatives and the powers of guardianship, you’ll be able to pick out specifically what a person needs. And that’s the important part too is only taking powers of guardianship or giving somebody support in the areas in which they need. Like I don’t need help in finding a place to live so I wouldn’t need somebody to take that power of guardianship. So just take a moment to really think about what is needed.
02:03 [Allycia Wolff] Before we really dive in, I want to go into a little bit of history of guardianship and how we got here. For centuries and for decades, guardianship has been a part of the discussion when thinking about supporting people with disabilities. And this started hundreds of years ago and really started to come into fruition and back in the days of institutionalization in the 40s and 50s and 60s and 70s and prior to that as well. But when people with disabilities went to state hospitals, then the state would have decision making powers over a person. And then that has stayed a part of the current conversation in supporting people with disabilities because when anybody turns 18 we become a full legal adult and we’re able to make all of our own choices and decisions. And so guardianship really became a conversation when people were saying, “Oh well people with disabilities don’t have the capacity or the ability or the competency to be able to make decisions about their life. So we should remove those rights and then put them on to somebody who is considered a competent adult.” So this has been a conversation for a really long time that if you have a disability, guardianship is a needed process to happen. And while guardianship is a really necessary process for some people. It’s just one option as far as decision making goes. And so the podcast today is going to dive in to all of the options in decision making. And I want you to know that I’m not here to place a value judgment on what decision for decision making, you and your family make because I don’t know each person individually but it is my job to help people know that there are options. So since you have already picked aside what different decision making help your loved one needs. Now we’re going to talk about what ways you can help your loved one make decisions in different areas.
04:11 [Allycia Wolff] And so typically when I talk about guardianship, I have a whole hour long presentation. This podcast isn’t going to be a whole hour long cause that’s a lot of information. So I’m going to talk more high level about options in guardianship and know that you can call the arc of course anytime for any advocacy assistance. There is a webinar on YouTube that you can watch also for more in depth information. And we also have an Arc Guide to guardianship on our website. Our Arc Guides are documents that advocates that here at The Arc make and type up and explain a really complicated system into terms that the everyday human can understand. So our Arc Guide to guardianship goes over alternatives as well as the powers of guardianship.
04:59 [Allycia Wolff] So when we think about guardianship and what options we have, guardianship is one option, a full guardianship. Also there’s a limited guardianship. The court process has seven different powers of guardianship and now this is in Minnesota. This is specific to Minnesota state statute. If you’re in another state, I’m not sure what the powers of guardianship would be, but in Minnesota you can do a full guardianship which has all seven powers, a limited guardianship, which is picking and choosing any of those powers that a person needs, and then alternatives. Alternatives are anything that don’t require the guardianship court process. A lot of people are interested in alternatives to guardianship because they know that their child needs support in making decisions, just like a lot of 18 year olds need support in making decisions. But they don’t want to permanently remove decision making rights because going to court is permanently removing decision making rights. So The Arc’s stance is to try alternatives as much as possible and know that you can try alternatives to guardianship and then at any point you can go back to court and you can try to pursue a guardianship.
06:15 [Allycia Wolff] There’s a, there’s a myth going around a lot of circles that you have to do guardianship by the time somebody turns 18 otherwise it’s going to be a really, really difficult process. This is not true. You could pursue guardianship when a person is 18 when a person’s 19, 25 45 62. Side note: guardianship often happens frequently within two populations within serving people with disabilities, and within serving people who are elderly or aging. And so people that are losing capacities to make decisions. All right, back to alternatives. Alternatives are a good option for people who still want to help their child and support in making decisions, but not remove that right. Because the way that we make good decisions and learn how to make good decisions is by practicing that. I use the silly example that if somebody were to come in and say, Hey Allycia, I’m going to do your laundry and mow your lawn for the rest of your life.
07:15 [Allycia Wolff] I’d be like, yeah, okay, cool. Go for it. I don’t want to learn how to do those things then. And it’s a silly example and I use a silly example intentionally because without ever being pushed to learn how to make those decisions, I’m never going to learn how to make those decisions. And there’s a lot to be said about feeling that power and autonomy over my own life and feeling like, Oh, hey, this is my life. These are my decisions. And to feel a lot of power in that. We find that people with disabilities that don’t have a guardianship are actually less susceptible to instances of abuse because of that autonomy and that power that they feel. So these alternatives, what are they? Just to list off a few alternatives. Some are a release of information. A parent can have their child sign a release of information for their doctor’s office or for their school.
08:13 [Allycia Wolff] So parents can still talk to doctors and psychologists and teachers and still get information that’s needed. Another alternative would potentially be an authorized representative. This is somebody who can be on a person’s medical assistance account with them and so they can manage and call MA and do all of that fun healthcare stuff, without having to have a power of guardianship or something more restrictive. So the authorized representative is a way to help manage that. Another alternative to guardianship is the ABLE account. We talked about that in an earlier episode of the podcast. Another alternative could be a circle of support. So this is the people that you know in life who are there to help you in making decisions. If I went out to my car today and I had a flat tire, I would have no idea what to do. I unfortunately never was taught how to change a flat tire.
09:10 [Allycia Wolff] Now this isn’t something that is an incompetence of mine. I have the ability to learn how to change a flat tire and do that. It’s just not a skill that I currently have. But what I do have is people in my life that I can turn to for help. And that’s something that most of us have and on all of us pretty much have somebody, have at least one person that we can reach out to and seek out for help. And this is an alternative to guardianship because I may not know how to change that tire, but I do have AAA, I do have an uncle who’s a car mechanic who can talk me through it or can come and help me. And so that’s my circle of support.
09:49 [Allycia Wolff] And then another really cool alternative to guardianship is a supported decision making agreement. Now a supported decision making agreement is a a term that we, that the guardianship community is using a lot because guardianship itself is a substitute decision making process, right? Because it’s a substitute, somebody else’s being a substitute for that decision making. What we’re trying to move towards is supported decision making and a supported decision making agreement is kind of a contract, quote unquote, if you will, of a way that somebody can have a conversation about what kind of support they want in making. So a person with a disability would sit down and would fill out a supported decision making agreement. There’s a lot of forms that you can find online that give a template for this. You can go to supporteddecisionmaking.org, you can Google… Texas has a really great supported decision making agreement, and basically it says the person with a disability is able to say I want help in what kind of medications I take, in a where I live, in how I schedule my doctor’s appointments, and what jobs I take, but I don’t want help in where I live or what kind of personal possessions I have.
11:06 [Allycia Wolff] And so it’s a person saying themselves what kind of help they want in decision making. And this can be a really powerful tool because it opens up the conversation of what a person wants and doesn’t want. I like to think of a supported decision making agreement as kind of a casual contract. When I was 16, one of my friends got her driver’s license and her family decided to let her use the family car. But as a family they came up with a contract. She could only use the car between the hours of 7:00 and 9:00 PM, and there could only be one person in the car, and this contract wasn’t legally binding by any means, but it did allow my friend and her family to have about how she was going to slowly transition into driving safely with the support of her parents. If she broke that contract, her parents couldn’t call the police and say, you know, she broke the contract, but it would be a format to help people just know what kind of support was available and what kind of help she could expect to receive.
12:18 [Allycia Wolff] So supported decision making agreement is a really great tool that some states are starting to put into statute. And Minnesota is actually trying really hard right now through a few different interdisciplinary collaborations to try to put into statutes so that people with disabilities, and people that need decision making help, have more options. Because right now the only legal option to help people make decisions is by removing somebody’s rights through guardianship. So we want to create more opportunities for people to get support in making decisions. Because when many of us are turn 18 we’re not making the best decisions about our life. And it takes a lot of trial and error and a lot of support to be able to make better decisions in the future. So to permanently remove somebody’s rights through guardianship at 18, that can be challenging. It could be, it could be something that can be really hard for people.
13:16 [Allycia Wolff] And so a lot of people, a lot of parents are saying, you know, I want to support my child in making decisions about the future, but I also want to give my child the opportunity to make mistakes and to learn how to make more decisions in the future. Everybody has that capacity to be able to learn how to make better choices in the future. So alternatives to guardianship can be a great way to go about that. Now, let’s say that you try alternatives to guardianship for a year, so your kid turns 18 and then you try alternatives until 19. Let’s say it goes great. That’s wonderful. You can keep doing alternatives in whatever way they work forever. Let’s say that it doesn’t go so well. You can go back to court at 19 or any other age and say, Hey, we really tried alternatives. They don’t work. We do need one or two powers of guardianship or a full guardianship, and then you can explain to the judge why this is needed. Judges are starting to ask the question now when it’s coming to guardianship, what alternatives have you tried and why haven’t those alternatives been enough to support somebody in decision making? It starting to change the implication that people with disabilities need a guardian, and it’s starting to say people with disabilities are competent and like everybody need help and support. And so and so tell me about this person individually, what works, and what doesn’t work. So let’s dive in a little bit to the actual guardianship court process and what statute says. So guardianship in Minnesota is split into seven different powers. Of these seven different powers, people are required to choose only and exactly what a person needs in decision making rights.
15:10 [Allycia Wolff] So just for the sake of clarification, I’m going to list out the seven different powers and kind of explain what each power covers. The first power of guardianship is determining place of abode, which is where a person lives. The second power is care, comfort, and maintenance. This includes academic services and vocational services. So job and school. The third power is reasonable care for personal effects. This is clothing and furniture. The belongings that a person has. The fourth power of guardianship is medical or other professional care. The fifth power is approving or withholding of contracts. The seventh power is supervisory authority, knowing who somebody is spending time with. And the seventh power is accessing government benefits.
16:03 [Allycia Wolff] So these powers are all various different aspects to a person’s life as far as decision making goes. Note that the powers of decision making for guardianship are different than the powers of decision making for a parent. So it’s different. And that’s worth noting because a guardian only has the powers of guardianship that are covered in the seven different powers. So sometimes it can get confusing for parents and for loved ones and for caregivers of what a guardianship is and what a guardianship isn’t like, what’s a parent’s responsibility and what’s a guardian’s responsibility. So you can always go back to the seven different powers to know exactly what a person is required to give assistance with. Now also, guardianship isn’t something that is going to necessarily inherently fix or solve a lot of the issues that parents and caregivers would imagine that it would or would hope for it to.
17:01 [Allycia Wolff] So let’s use the for instance of the medical or other professional care power. So let’s say as guardian you are guardian of the medical power. Now this means that as guardian, you are responsible to set up any doctor’s appointments or any therapy appointments. You can manage a person’s medication and the dose of medication and you can set all that up. So that’s all the decision making for that medical piece. Now this doesn’t really extend beyond that. So you can set up all of the best therapies and a person can go and refuse to talk to the therapist or they can just refuse to go because people still have those civil and constitutional rights. So it doesn’t necessarily fix all of the things that people would think that it would. You can set up the perfect IEP for somebody, but a person could still say, Hey, I don’t want to follow that IEP. I’m not going to show up to school. And so there’s little intricacies and things to consider and please call us and we’d be happy to chat with you through all of these. But ultimately those are the seven powers of guardianship and you can imagine them as silos. So if a person only needs two of the powers of guardianship, you can just pick and choose and file a petition for only those two. Remember that you are not required to do a guardianship. It is not a requirement and it’s not something that has to be done by any one point. That’s just something really important to note because it’s something that has come up a lot in calls that I’ve received lately. And now let’s talk a little bit about the rights that people have under guardianship. In Minnesota state statute, there is a bill of rights for people under guardianship. And this bill of rights includes human rights that every person has, regardless of any level of guardianship that they have. So this is everything from, the right to be treated with dignity and respect, to the right to privacy, to the right to get married and procreate. So the right to get married and have children isn’t impacted at all by a guardianship process.
19:21 [Allycia Wolff] Also on that bill of rights is the right to be treated in a person-centered way as far as guardianship decisions are taken. And what it means to be person-centered is by giving somebody real due diligence in what they say their desires are and what their hopes and their dreams are. And so as a guardian, it is a person’s responsibility to hear what a person under guardianship wants and to do their best to try to make that a reality. So if a person wants to say, own a gun, it is the guardian’s responsibility to have a conversation with a person about what it means to own a gun, why they want to own a gun, what they want to do with that, how to be safe in doing that. And so to really have that conversation with people and to really see from the person’s point of view why they want that.
20:20 [Allycia Wolff] And so it is the guardian’s responsibility to really do due diligence in looking through that request. Being person-centered also doesn’t mean that if a person requests to have something then yep, okay, absolutely. Being person-centered means really honoring somebody and their choice and what they want and hearing them and respecting that request and then having a conversation about what it would look like in reality on a day-to-day basis. And then being able to make that decision in a respectful way. And it doesn’t necessarily mean that you have to say yes to that request. You know, it may end up being that getting a gun just isn’t a really good choice, as a parent may suggest to their child regardless. But being person-centered does mean being open to the conversation and really honoring somebody’s desires and hearing people just like we would all hope from our friends and our family.
21:16 [Allycia Wolff] So being person-centered again is the duty of a guardian. And to help people learn how to make choices moving forward because everybody has the capacity to be able to make choices and to learn. So that’s basically what I want, and what I hope for people who are listening to this podcast today to take away. Is that guardianship has been a conversation for many, many years when it comes to supporting people with disabilities. But it’s only one option. And there are other really wonderful options like alternatives to guardianship or limited guardianship if a guardianship is even needed. Too often we just assume that people need a guardian and don’t question ourselves into like, why are we assuming that. You know, some people may actually need a guardian, people who have really complex medical conditions or people that have really significant needs may need a guardian.
22:11 [Allycia Wolff] But when we look at overall, people with disabilities who fall into that category of needing that level of decision making, it’s pretty minimal. So get creative in how to help somebody making decisions about living their life because people are competent and can make decisions and do have the capacity to be able to live really wonderful lives. And that’s really overall what this whole podcast series is about is how can we empower people to live their own life, make great choices, be happy, and feel supported by friends and family. Right. And guardianship is just one part of that. Now, next week we’re going to be talking about successor care and sibling support, which flows into this conversation I think pretty seamlessly. So tune in next week for when we’re going to have that discussion.
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23:14 [Allycia Wolff] And as always, if this episode inspired any questions from an advocate at The Arc, please give us a call at (833) 450-1494. We are always here to answer any questions. As I mentioned before, we have a webinar on YouTube called guardianship options and it goes more into depth into all of the stuff that I touched on today. Focus on the Future is a podcast of The Arc Minnesota. Subscribe to this podcast on your favorite streaming service to stay up date with the newest episodes. Please give us a review and let us know what you’d like to hear in the future. If you’re enjoying listening, you can also support the podcast and our mission by donating at thearcminnesota.org/podcast. Our podcast music is composed and recorded by Micah Kadwell. Micah is a talented guitarist from New Brighton, Minnesota who also has autism. Thank you, Micah. Focus on the Future is produced by myself and hosted and is supported by a team of sound engineers. Thank you everybody. Have a great day and we’ll talk to you next time.
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