Supported Decision-Making and Guardianship: Parent Perspectives

INTERVIEWER: Let's talk about guardianship. ROSEMARY: I find that this is a subject that really frightens parents. When their children approach 18, they've heard all kinds of stories about guardianship. And they just don't know what to do, and they feel afraid. So giving them a little bit of information, and also, helping them know that it's a decision that can be made any time after a child turns 18, and not see it as a rush. But the basic fact is that society, the world assumes that a person at age 18 is now able to give informed consent and to make decisions about things, like bank accounts, medical decisions, money, contracts. And so a parent needs to start thinking ahead of 18. Is this person capable of making those kinds of decisions legally? So they have to petition the court if they decide to do guardianship and go forward with the legal process that takes the rights away from that person and gives them to the guardian or the person that will take on those responsibilities. One way I see it is that there's a sort of spectrum. My son has severe disabilities. And so he doesn't read, write, or talk. He doesn't understand the abstract world. So we felt like it was pretty clear-cut that we need to become full guardians for him. On the other end, there might be young people who obviously can make their own decisions. But it's in the middle that I see parents really struggling. They have a hard time with students that are, say, at a second grade, third grade level of reading, writing, very verbal. Those are the people that we have a hard time figuring out whether the parents should try to get guardianship or not. INTERVIEWER: I find that a good way to frame that thinking if you're a parent or to open a dialogue around that if you're a special ed professional, is to ask the question, what kind of an adult decision maker do we think the student is going to be? Because what that yields is a lot of thinking around, what kind of medical decision maker will they be? What kind of financial decision maker will they be? What types of judgments are they going to make about their personal safety, or about personal issues and relationships? All of that is going to yield sort of a spotty profile, especially for these middle-ground students who might be good decision makers in one area and need support with decision making in another area. There's flexibility within guardianship that will allow more limited types of guardianship. And at the same time, if you find that for your student, you're looking for an even less restrictive not rights-based type of supported decision making, there's a lot of creativity that you can have in the world of powers of attorney where you can craft something very narrowly or very specifically to that person's needs, so that they have the support they need around decision making without taking anything away that doesn't need to be taken away from them. ROSEMARY: And I think that if the family does decide to get guardianship, they have to understand that it takes money and time, effort. They have to go to a lawyer as a rule, and hire someone might cost $1,000 or maybe a half that. But it is going to take income. And it also takes perseverance and the decision to really work through a process, a legal process. I do find that for parents who have children with significant disabilities, there is a big sense of relief once you do get it. You feel like you have taken a step for a lifetime that really gives you a sense of, ah, now I've made my decision, and now, I am in full control of the situation. I have the right to make all decisions for my child. So there are many cases that I've been surprised that I have not been asked for my letter of guardianship. Walking in the ER, never does anybody say, do you have guardianship of your child? They always treat right away. On the other hand, I went in to open a bank account for him. And they said, he's over 18, why are you here? Where is he? And I had to go home and get my letters of guardianship to do that. So it does give you a sense of security knowing that you do have the power to make the decisions for someone who truly does need that back-up plan. But also, I feel like it's so important to have a variety of ways for parents to handle the situation. And I always say to families, when I talk to them, I'm not a lawyer, I'm not a lawyer, I'm not a lawyer. Just go find the right person, a lawyer or someone with that expertise to truly explore the options so that a parent, at least, gets the facts and then can make a decision based on the right information. INTERVIEWER: Rosemary also brought up a good point at the beginning. And that was, another flexibility that families have is in the timing, depending on the personality of that soon-to-be 18-year-old and individual factors to them and to your family situation and where you live. It doesn't necessarily have to be that all of this is locked down in place and decided on the date that that student turns 18. Now, for some 18-year-olds, absolutely you want to know that you've got things in place. But for others, there may be time to let them continue to grow and mature, get more education, continue on in your transition planning because it may be part of your transition planning that you're working on decision making and more independence in decision making. None of these mechanisms are set in stone. So even if a higher level of supported decision making is needed earlier on, that may not need to be the plan later when they're 22 or 25 or 35. And so just like the special ed process while they're in school is really dynamic, we make a plan to get a certain length of time down the road. Issues around guardianship in support of decision making for your future adult is going to be dynamic also. ROSEMARY: Thank you.