Geralyn Arango Deely (00:01):
(music plays)

(00:01):
Hello, family member. I have a question. Who decides who decides? In other words, what's the difference between power of attorney and guardianship for our loved ones on the path?

(00:26):
Hello again, and welcome to season six, episode two of Our Parallel Paths: A Future for My Loved One With a Disability... and For Me! I'm your host, Gerry, Dr. Geralyn Arango Deely. And this podcast is about just what the title says, The Parallel Paths of Family Members and their loved ones with intellectual disabilities.

(00:48):
I'm a parent myself and I always have questions. So, let's nurture and support ourselves as we nurture and support our loved ones with intellectual disabilities. There's more than one path, more than one future to talk about, and that's why we're here.

(01:03):
So, I'm excited to be back to podcasting after a very nice holiday. Eh, the last of our holiday stuff just got put away. I hope you had a nice holiday season two, wherever you may celebrate and whatever you may celebrate. And now we're shoveling out of snow. Oi.

(01:22):
So today, let's talk about a topic you and your loved one may already be exploring or maybe the decision is being made or has been made. It's an important question for families and adults with disabilities as we navigate adulthood together and the decision is best made before the age of 18. The question is who decides who decides?

(01:50):
So, this question who decides who decides, there are two legal tools for addressing this. There's also a third answer, which is to do nothing at all. And we're gonna put that off to the side because that's pretty generally not a good answer for most of us.

(02:07):
The legal tools that we do have to choose from are often mentioned together, like A or B, as it were, but they're very different. Guardianship or Power Of Attorney for our loved one. Does that sound familiar?

(02:22):
Each of these choices can have a big impact on the independence, the rights, and the day-to-day lives of our loved one. What do family members need to understand and share with their loved one to make a well-informed choice? And how does the question, how does the decision "who decides who decides?" get answered when our loved one with intellectual disability has a Power Of Attorney? How does the question, how does the decision get made when our loved one has a guardian appointed to them?

(02:56):
Now, before I say anything, the disclaimer. If you've listened to this podcast, you know, I'm not a lawyer, I'm an educator. So this episode is for informational purposes only. It is not legal advice.

(03:10):
Laws may vary based on where you are, so it's always a good idea to do your research, to talk to other families, maybe a family support group you're involved with, to talk with a qualified professional, or, or two, about your specific situation, and of course, to talk with your loved one about the options being considered.

(03:32):
That's what I did. I read up. I talked to friends on the path. I asked the internet in our local support group. I talked to Nic about it, and we ultimately took our family's decision to a professional to be put on paper as it were.

(03:47):
Now, when anyone turns 18, the law sees them as an adult, disability or not. This means parents, caregivers, or supporters no longer have automatic authority to make decisions on their behalf. Now, as you know, I have two adult children, and 18 looked different on each of them. The moment when I realized that my children were now adults did not happen on their birthdays though.

(04:13):
For example, hmm, I went with my daughter, Courtney, to her primary physician for her annual physical, as I always did. Now, I said to her that I wasn't sure I was supposed to be there anymore now that she was 18, but she's like, "Why don't you come?" So I did.

(04:31):
But after a bit, it was my doctor, her doctor, our doctor, who looked at me and said, "You're free to wait for her in the waiting room." And I did, which was a little awkward because I had already said I would. I didn't get credit for trying to be the grownup's mother. I guess it was a bit of a revelation to my daughter too.

(04:52):
Still, her adulthood, my daughter's transition to being a grownup had been happening over time, a little more typically, things like getting her driver's license, a first little part-time job. Things like that had kind of gently prodded my husband and me to admit that our daughter was growing up and that we'd need to loosen the reins little by little, which we, you know, pretty much did.

(05:22):
Now on Nic, turning 18 was very different. His dad and I had been his formal and informal mouthpiece, as it were, just about all his life. We always tried to be sensitive to Nic's interests and wishes, like we did with his sister. But we'd had to intuit a lot more, and perhaps you know what I'm talking about, and we had to advocate in like every setting - in school, in the community, at the doctors, at the dentist.

(05:53):
But on his 18th birthday, and by that time his father had passed on, I lost my job as mouthpiece big time, and that was more surprising. Maybe because I'd had to be involved so much more deeply with him than with his sister, maybe because Nic wasn't understood on the phone or in person, so I often had to speak. Or because he struggled with telling me what he needed and wanted, so I was, you know, kind of his rep for all those years, hoping that I really did understand him.

(06:27):
And now, no one was listening to me, no one was asking me, and they still weren't always understanding Nic. So, what to do? A decision had to be made. So read up, ask around.

(06:42):
And the question, how would decisions be handled by my adult son now that my authority was legally done? How might medical decisions for a legally adult person with an intellectual disability be addressed? How might finances for a legally adult person with an intellectual disability be handled? Would guardianship or Power Of Attorney advance the vision of, of like interdependence that Nic and his dad and I had been working toward all these years before we put that 18th candle on his birthday cake?

(07:20):
So, here's what I had to work with, compliments of my resources and continually added to by the internet and AI for purposes of this podcast. It was informative to ask friends and to find out that there was a preference, guardianship or power of attorney. It was really helpful, this decision, this preference, as I decided, because my fellow families were already on this path with their older children, and they shared reasons for their decisions that resonated.

(07:55):
And so, what do you think won in my tiny poll, what would have won in yours? Power Of Attorney won among those I questioned, and there was a vote for Guardianship. But let's talk a bit more about these two options.

(08:11):
I'm gonna define guardianship, and then I'm going to define power of attorney, or POA, from my research and my personal experience. But as you listen, notice for yourself what's resonating with you and what is not. Listen for what you think your loved one needs and how you'd provide it.

(08:34):
And also, listen for what you think you need in order to support your loved one in adulthood and how you will provide it because that can really matter. 'Cause remember, we've had to let go at this point of our up to 18 years old kid authority, and that's hard. We don't completely have to let go of our influence though. We just have to figure out what works to support our loved one to be independent, or, I believe, interdependent, because I think we're all interdependent.

(09:08):
Anyway, Guardianship is a court-ordered arrangement. A judge appoints a guardian to make decisions for another adult, who is then often referred to as the ward. Every situation is different, but depending on the situation, a guardian, whether it's me or someone else, gets the ultimate authority over my loved one's financial matters, medical decisions, education, services, living arrangements, all kinds of stuff.

(09:37):
There are different levels of guardianship. Someone may assume the role of a full guardian and make just about every decision, or there may be limited guardianship, so only certain areas maybe say like medical and financial are covered. I thought it was interesting that the courts consider guardianship as a last resort precisely because it limits or totally removes a person's legal rights. When the courts ask who decides who decides, feels to me like their next question is, "Are you sure?"

(10:15):
Guardianship is hard to change once the decision is made, but it can be helpful to appoint a guardian if a person truly cannot make or communicate decisions, even with support. This decision of guardianship is not a decision or an assumption to make lightly because guardianship is the more restrictive option over what I'll explain next, power of attorney. Ask what your loved one may need and reflect on what you need.

(10:52):
Power of attorney also referred to as POA, we love an acronym, is not court appointed. The individual chooses someone they trust to help with decision making. And you can see right there, questions may pop up. Often questions that reflect out on their loved one's ability to make decisions, like starting with who would they even appoint.

(11:19):
But even right here at the start, I can tell you that the decision of who to appoint does not have to be the individual's alone. In choosing a power of attorney, we may have to make some assumptions about our loved one's ability to make decisions. We need to make what the advocate and educator, the late Anne Donnellan, called in 1984, "the least dangerous assumption."

(11:48):
This is a concept that has stuck with me forever. The least dangerous assumption kind of says if we are not 100% sure, beyond the shadow of a doubt, that our loved one is unable to make decisions, given even the right needed supports, the least dangerous assumption says, give them the benefit of the doubt. Just because we can't 100% see something does not mean it isn't there.

(12:19):
We can support people with disabilities to make decisions if they grant us power of attorney. I don't own Nic's life. Nic owns Nic's life. I choose to presume competence in Nic and I try to help him, not to control him. I have to try to make the least dangerous assumption that Nic, even if I am not 100% sure, has the right to make a decision about his own life and his power of attorney is there to support his decision making.

(12:55):
Now, of course, ideally, power of attorney's gonna work best when someone can understand their choices and wants the support so as not to have their understanding overshadowed by someone else's authority, but, you know, there are shades of gray in there. And that's okay.

(13:12):
So, if we break up guardianship and power of attorney, we break them down and compare them. Here's a quickie version of what we get.

(13:22):
Guardianship is ordered by a court. Power of attorney is chosen voluntarily by a person with an intellectual disability with help from their supporters. Guardianship removes or limits a person's rights. Power of attorney assumes that the person keeps their rights.

(13:46):
Guardianship is difficult to change because it is court appointed, and it's often long term. Power of attorney can be more flexibly changed, and it's easier to revoke or adjust because it does not involve the courts.

(14:04):
Who decides who decides? Back to that. Perhaps you can hear a difference and sense which one, guardianship or power of attorney, might better meet your loved one's needs and yours. One of these options substitutes a person's decisions with someone else's, and one supports someone's decisions. So Nic and his family, we chose power of attorney.

(14:36):
Just to give you a, a quickie little example, what power of attorney versus guardianship might look like in the day-to-day, I'm gonna give you a simple example. Nic would like to, a new dentist. He doesn't like going to the dentist. No one likes going to the dentist, do they?

(14:56):
And it's evident as soon as he walks into the office that he is not comfortable with his dentist, like the way he was long ago with the pediatric dentist, but he can't go back to her. So if I was Nic's guardian, I could say, in my capacity, "You stay with the dentist you have," even if he doesn't want to. You know, I, as the guardian have my reasons, like maybe this office is convenient, and we've been going there for years.

(15:25):
Okay. If I am Nic's power of attorney in this situation, he still would like a new dentist, he doesn't like going to the dentist, and when you see that he's not comfortable with the dentist, you realize same situation, right? But my job here is I, you know, we have a conversation.

(15:46):
I try to explain what's good and what's not so good about switching dentists. I may even inject a new idea, different dentist in the same practice, because yeah, it is close to our house and it's convenient and we have a longstanding relationship, maybe just a different dentist in the same practice. So, Nic and I go back and forth a little bit, but then Nic decides.

(16:08):
And, you know, maybe he does try that other dentist in the same office because I gave him that choice, um, and said, you know, "Give this a try and we'll go twice and then, you know, then if it works, it works and if it doesn't, tell me what you want to do." And so he tries another dentist in that same office, and he goes once or twice and this is better and we sort of solved the problem.

(16:34):
But maybe we revisited after those one or two visits with a new dentist in the same office, but we realized that that didn't do it. And so we changed practices because Nic gave it a shot in good faith and it didn't work out.

(16:51):
But this is me trying to support Nic's decision as best I can, sharing ideas, but not saying, "You have to stick with the dentist because it's convenient for me." And sure, a guardian could do just what I did as a power of attorney, but that would be the guardian's choice, and they could go either way.

(17:14):
Now, I know Nic needs help with decision making. I know we have to listen and I know we, his supporters, me, his stepdad, his sister, aunts and uncles, we also might struggle with honoring his wishes when we don't agree or we don't understand. That's where relationship and trust and the concept of power of attorney comes in. That's where our role supporting decision making is key. Nic needs to trust us, his supporters, and his supporters need to find ways to help clarify and explain options when we need to, even though the final decision is his in this power of attorney model that we've chosen.

(17:59):
When Nic needs explanations, we explain. We don't decide for him, and we've found that, you know, for us, it really helps Nic to understand and make choices by doing stuff like giving him visuals, uh, or sometimes it, like the dentist example, it's making a choice between a couple of options or saying, "Well, what happens first and then what happens? We try the dentist twice and if... And then we can go to a different dentist." So, those kinds of options seem to make it clearer for him. And so we're learning and, you know, so is Nic.

(18:37):
I think in the end, what helped Nic and I make a decision toward power of attorney is that, you know what, I reflected and I asked myself, how would I feel if someone made all my decisions for me and didn't assume I should have any say or that I was able to make decisions at all? What if someone instead assumed that I could make decisions for myself and could get the help when I need it? What if I had the freedom to make great decisions, to make good decisions, to make not so good decisions like everybody else?

(19:19):
What if I could ask for help when I need it? Isn't that life? Isn't that how everyone learns and grows? Can I decide who decides? I'm trying to give Nic the option to decide for himself with the supports he needs to do it.

(19:40):
So remember, ask around, look around, reflect. It's on you and your loved one to see what works best, but come in informed. And listeners, thank you for spending some time with me today on the episode of Our Parallel Paths where we talk about guardianship versus power of attorney.

(20:00):
There's much more to learn, and I hope you'll like and follow, subscribe even, to our podcast, share it with family and friends, and I really hope you'll return to listen and learn from more stories of people like you and me, and our loved one with a disability on Our Parallel Paths. I want you to know you're not alone, and I would love to hear from you. Feel free to comment, to rate the podcast, to join our Facebook group, and I'll see you next time.

(20:28):
This podcast is produced by Networks for Training and Development.

(20:31):
(music plays)