Today, we sit down with Sam Crane, the legal director of the Autistic Self-Advocacy Network, to discuss guardianship and its superior alternative: supported decision making. Sam takes us way back to Ancient Rome to the roots of guardianship, all the way through present day cases like Britney Spears and Nichelle Nichols.
Guardianship is often for life, and often results in someone outside of your family ultimately making decisions for your child, whatever you initial intentions may have been. It can affect your child’s long-term job prospects, or even end with them institutionalized. You’ll want to listen to this episode and check out the resources suggested by Sam to take the better path of supported decision making.
More financial and educational resources about supported decision making from the National Disability Rights Network.
Even more financial and educational resources about supported decision making from the Center for Public Representation.
The Right to Make Choices – Resource from ASAN.
Healthcare Transition to Adulthood Toolkit from ASAN.
Joyce: Hi, and welcome to Mom Autism Money. Today, we have a really good episode and I know we seem to always say that every episode, but it is so good. Do you want to tell them why?
Brynne: Yeah, absolutely. So, guys, we heard a lot from you about guardianship issues and kind of just what a harrowing process it can sometimes be. And so we looked into it a little bit and we reached out to the Autistic Self-Advocacy Network.
They have a lot of great work in this space and it turns out there’s an alternative to guardianship and some of those things that make the process not so great, both for you and for your child. So we sat down with Sam Crane, the legal director the Autistic Self Advocacy Network. A graduate of Harvard Law School, Sam previously served as staff attorney at the Bazelon Center of Mental Health Law, focusing on enforcing the right to community integration as established by the Supreme Court in Olmstead v. L.C.
From 2009 to 2010, Sam served as law clerk to the Honorable Judge William H. Yohn at the U.S. District Court for the Eastern District of Pennsylvania.
In recent years, Sam has done a lot of work on guardianship and advocating for its alternative, supported decision making.
Without further ado, let’s talk to Sam.
Brynne: Alright, hi, everyone. We are here today with Sam crane from the Autistic Self-Advocacy Network, and we are going to be talking about guardianship. Now when Joyce and I were preparing the first season, we really wanted to get feedback from all of you about the topics that are most important to you. And one thing that came up again, and again, was this concept of guardianship.
Some of you have shared just how to’s, like we did XYZ and here are the steps. We’ve noticed this recurring theme and it’s not a super happy one. A lot of people are sharing this very similar memory. And that’s this traumatic scene in the courtroom where you’re sitting across from your child as prosecution and defense.
It’s not a situation you want to be in. This is not a decision I think any of us as parents take lightly, but it’s the way the system is currently set up. And if there is another way forward, we’re going to try to learn about that today from Sam. Sam, I’m wondering if you can tell us if this is kind of just an anomaly that we’re seeing in our audience, or if this is a consistent problem and kind of how we ended up here historically legally.
Sam: Sure. Hi, I’m Sam Crane from the Autistic Self-Advocacy Network. I’m the legal director at the Autistic Self-Advocacy Network. And one of my focuses is making sure that people have access to autonomy and self-determination as adults. And in particular, looking at guardianship and alternatives to guardianship. I think one of the things that we see a lot is that people who are placed under guardianship, first of all, there is often this very traumatic scene where people have to, you know, see the people who are closest to them show up in front of court and present a really negative view of them in order to portray them as in need of guardianship, um, you know, discuss all of the bad decisions that they might make.
All of the challenges they might have with mathematics or other, you know, things that are necessary in order to set a budget. And the result is placement under guardianship that really makes people feel like they are able to fully become an adult.
And one thing that we see often is that people will seek a guardianship thinking that it’s just going to be until their child who might be 18, they might think it’s going to be just until their child develops certain skills. But once a person is placed under guardianship, it’s almost impossible to exit a guardianship. So they end up being essentially permanent and causing real problems between an adult and their family.
Brynne: Absolutely. I’m wondering if you can speak a little bit more to some of those specific issues that come up between adult children and their, their guardians or their family, what are some of those negative effects that people experience on a regular basis?
Sam: So there, there are quite a few and I’ll start with what I would call the best case scenario, which is where a person has a good relationship with their family members.
Obviously, a lot of people don’t have a good relationship with their family members and in that case, guardianship can be a lot worse. But even if you have a good relationship with your family members, people there’s studies showing that people kind of start checking out of decisions when they’re not the decision-maker.
So you end up in a situation where when the, you go to the doctor’s office, the doctor sees that the family member is a guardian and the doctor starts talking primarily to the family member. If you have a bank account, you can’t manage your own bank account. So you’re going to end up having your guardian do all of that financial management for you.
You don’t end up getting practice with these essential skills, uh, such as financial management, making medical decisions, making housing decisions. You end up in a situation where people sort of end up very passive and about in the decisions that affect them. That’s not really going to serve people well as parents age, and can’t provide that level of support.
You end up in a situation where as a parent becomes unable to serve as a guardian, a sibling might end up in that role. A sibling might not have the time or energy or resources to fulfill that role adequately. And people under guardianship end up kind of being a bit neglected, you know, having their affairs be a bit neglected because they’re not involved in these decisions.
They’ve learned to take a back seat, but the person who’s stepped in as a guardian might not be very involved in these decisions either. The worst case scenario as parents age is that people will end up in what we’d call a professional or public guardianship. And that’s a stranger who’s probably got multiple people that they’re serving as a guardian for, and who might not take the time to get to know an individual, especially if the individual has significant communication challenges, or is living in a group home and, or an institutional setting?
We’ve seen cases where guardians meet with the people that a guardianship they’re a guardian for maybe once a year, sometimes less often if the guardianship has been going on for a long time. At that point, you really end up having someone who, you know, can’t take control of their own affairs. But is, you know, has really no one who’s particularly active in doing it for them.
And people can end up in pretty bad situations or becoming institutionalized because of that. In the worst case scenario, which is, you know, that’s the best case scenario. The worst case scenario I would say is when people either have a problematic relationship with their family, or even when there’s strife within the family, we see family members, divorced parents or siblings that disagree with each other fighting in guardianship court for years, you know, over the course of years, alienating, you know, refusing to let a person talk to other family members who don’t have guardianship moving people out of the area.
So in order to isolate them from other family members, a lot of the time when, if this goes on long enough, the court will get fed up and appoint an institutional guardian over someone or public guardian over someone who, you know, might decide that the whole family is toxic and, you know, cut people off from their, you know, family members who they perceive as disruptive influences.
It can cost an enormous amount of money to fight these kinds of cases in guardianship court. Um, and then you see cases like the Britney Spears case, which was, you know, very public, but not very unusual where, you know, Ms. Spears really started resenting her parents because of the, the control that her father was exercising over her and the control that he was exercising over extremely intimate decisions like marriage or wanting to start a family.
Um, she really clearly felt significantly harmed by that. And I can see how that would have, you know, that kind of conflict between someone under guardianship and parent. It can really undermine family trust and undermine the underlying relationship.
Brynne: I love how you brought that up because I feel like publicly, it was very easy for people to feel empathy for her, for Britney Spears.
And because it’s such an obvious case, it’s just not right. And one thing that I’ve noticed in media since we’re talking just very shortly after that conservatorship was resolved, is that a lot of people don’t understand that this is happening all the time to disabled, especially to disabled individuals.
If you followed that story, it’s just the through line here is just very, very specific and there is still, we’re so happy for Britney, but there’s still so much work to be done.
Sam: After mentioning Britney, I really want realized that another very typical case, but one that doesn’t get as much press coverage is Nichelle Nichols.
She’s the actress who was famous for playing Uhura and Star Trek. If anyone’s a big Star Trek fan. And she has allegedly has dementia. And her case is a very typical case of the situation I was describing involving family conflicts. If you read about her case, it’s hard to get her voice. I don’t think that anyone is allowing whoever is her guardian right now is not allowing her to speak to press, but there’s at least three different people fighting over the outcome.
Other than her fighting over the outcome in a guardianship case involving her, all of them have very different perspectives on the level of support that Ms. Nichols needs and arguing that, you know, one is arguing that the other is trying to exploit her. And other one is arguing that the other is trying to exploit her.
It’s it can get really ugly when people fight over guardianship. And unfortunately, it’s very common.
Brynne: I’m wondering, when we look back, has the US always treated disabled populations this way within our legal system? Or how, how did this kind of develop and how did we get here?
Sam: The history of guardianship. It’s very, very long.
It actually has roots. You can trace it all the way back to ancient Rome in which, you know, if a person who was a land owner was found incapable of managing the land that they own, they could be placed under what we would now see as essentially a guardianship or someone will administer their estate for them.
And that concept was also incorporated into English law. Again, mainly with respect to land owners and people with significant assets as an attempt to safeguard the assets against waste. There was I think, a cultural attitude involved as well. You weren’t really seen as the owner of your own estate.
Um, it was, there was a perception that you needed to manage it well so that your heirs could have something to inherit. And that was, I think, seen as a very compelling reason to take someone’s, you know, maybe restrict someone’s autonomy in, in certain ways, in order to protect the interests of others around them.
Guardianship has since then been expanded significantly to include people who don’t have any significant assets. Before guardianship was expanded to include people who weren’t landowners, there was sort of a social convention that if someone maybe needed significant help had an intellectual disability, their family would support them without needing a court decision in order to do it.
As the society sort of became more focused on formalizing, I guess, formalizing those relationships and people needed to seek legal authority in order to do things like commit people to an institution, or, you know, as medicine started requiring informed consent forms, you started needing legal authority in order to sign those forms for people.
Now that people are starting to question guardianship a bit more or thinking of other ways in order to meet those needs without the need of a court order. So, first of all, we’re, we’re less open to the idea that maybe someone should be forced into an institution against their will. That is no longer seen as best practice.
But also even in terms of signing medical consents and other kinds of legal or financial documents, there is more of a recognition that maybe people should be able to execute valid documents or, you know, provide valid, informed consent, um, through support without the need for a court order.
Brynne: Even beyond just individual decision-making, this can have long-term effects on employment and full participation in society. And those are consequences that parents might not be aware of when they initially enter into this process. I know you had worked with a woman who was released from her guardianship. She was able to do that. I, it was probably an extremely difficult process.
And then she went on in her life and she went to law school and she was denied entrance to her state bar because of that guardianship, as I understand it. And I’m wondering if you could tell us a little bit more about that story and some of those other long-term potential consequences, even if your child is eventually released from that guardianship.
Sam: And this was an extraordinary story. I had never seen anything like it, although I’m sure it does happen from time to time, but it was, it was just very striking. Because you often think of guardianship as being for better or for worse, something that is used exclusively in situations where a person really can’t adequately understand or communicate decisions about their lives.
And I’m going to talk a little bit later about how, even in those situations, we don’t necessarily support guardianship because we do believe that everyone should have autonomy over their lives. But this was someone who was placed under guardianship while she was, I don’t think, I think if I remember correctly, it was before she was in law school, but she was working and an adult at the time.
Um, she was placed under guardianship after an incident of abuse. And there was a perception that the guardianship would help protect her from abuse. That guardianship was set aside at a later time. But when you’re applying for the bar, there is a question about whether you’ve ever been adjudicated, as I’m not sure what words that particular state used, but it’s typically something like incompetent or defective, not very great words to use for people, but that’s the words that they were using.
So she had to, when the guardianship was disclosed, the bar said you can’t be a lawyer because you have a prior adjudication that you can’t, how can you be a lawyer if you can’t even manage your own affairs? And so she had to appeal that determination through the state court system. And fortunately, I think she did have a very good result and I don’t know how much that result was thanks to advocacy of disability groups, but there was an effort to submit an Amicus brief in support of her to say, look, you know, she’s not even under guardianship anymore.
The court has found that she has the ability to manage her own affairs. So it’s discriminatory to say that she can’t be a lawyer simply because of her history of having a guardianship. So she was able to prevail on that, but it really wasn’t clear that she would along. And I’m pretty sure that in another person, you know, if another person faced this, they might either get a different result or they might not have the resources to fight it through the court system.
And they might end up losing out on that job opportunity. We’ve seen cases in which a guardianship, you know, has someone placed on a registry of people who can’t legally be in the same place as, you know, firearms or explosives. That doesn’t seem like so much of a problem, but if you’re in a culture that, for example, hunts, that can be a really big issue because you can end up being charged with a felony for going on a hunting trip with a family member.
We’ve seen cases in which, you know, if a person applies for a job, at some point, they might have to sign an employment agreement. If they’re under guardianship at that point in time, they can’t legally sign me employment agreement. The guardian has to. And then at that point, you’re essentially disclosing a disability to an employer when you might not have felt comfortable disclosing the disability at that early stage in employment.
And people might face discrimination once the employer learns that not only does this person have a disability, but in fact, they’re under guardianship. And there’s a stereotype that if someone’s under guardianship, they must know, they must not really know how to do their job. So the, you know, there’s all sorts of concerns about how guardianships can follow people around throughout their lives and, and cause problems.
Brynne: No, absolutely. And one thing that struck me while you were explaining all that is, especially with employment, is some parents might be thinking like, oh, well there’s protective laws. They can’t discriminate against my kid just because they’re disabled. And if you haven’t been through this process before, at least from the people I know in my life, and please Sam correct me if I’m wrong, but a lot of times.
The employer knows they can’t discriminate against you because of your disability. That doesn’t mean that’s the reason they’ll cite for not hiring you once you, so they’ll, they’ll work within the laws, but that doesn’t mean that your child won’t face discrimination because of it. And so that’s a really, really huge thing, especially when we’re talking about, you know, we think we’re only doing this for a short period of time and we’ve kind of discussed that.
Like, it’s really hard to get out of actually. So enter with caution, we talked a little bit about professional guardianship before and just all of the problems that presents. I’m wondering if there are ways that parents might be able to protect their child from that kind of institutionalized guardianship after they pass away.
And you’re not there to advocate for them yourself. I mean, ideally what we want is self-advocacy right? But we know that a lot of times that parent may be rightly or wrongly more respected in these legal matters than, than the child. So when we’re talking about institutional guardianship, are there ways that people can kind of prevent that?
Especially, I think a lot of us are concerned after we pass away what will happen?
Sam: Well, you know, obviously I think the number one way to prevent it is to not have a guardianship. Um, cause if someone has no guardian they’ve been using supported decision-making or some other support arrangement in order to handle their affairs then when the parent passes away, they simply get a new supporter.
There is no need for court involvement and you are far less likely to have new court involvement or a new court appointed guardian if you didn’t have one in the first place. If you have guardianship and you pass away, the court must appoint a new guardian.
Although just as an aside, we’ve seen situations where a guardian passed away and a court simply, it just didn’t get onto the radar. Courts weren’t monitoring their guardianship cases closely enough. They weren’t having their yearly status conferences like they needed to. And someone was in this legal limbo where they were supposed to have a guardian.
They still couldn’t make choices about their own lives. But there was no guardian. The court hadn’t appointed a new one. And so we’ve seen cases where people ended up in this legal limbo for a long period of time where they can’t make decisions, but they don’t have, a guardian who’s serving. But in any case, the court has to appoint a new guardian.
You can’t simply appoint a new one using a will, although you can express in your will, a preference for who should step in. Nevertheless, the court has to go through the process of appointing that person as a guardian. And there are unforeseen situations that can come up that it might be very difficult to protect against.
So for example, suppose you nominate your sister as a guardian, but in the meantime, your sister has moved to another city or is unable or unwilling to serve. Then, the court has to come up with an alternate person to serve as guardian. Another thing we see sometimes is let’s say you appoint your brother as guardian, but your sister is mad about it and files a counter petition to serve those guardian courts often try and split the baby and appoint a professional guardian so that they’re not taking sides in a family dispute.
The third thing that can happen is courts might simply not like who you’ve nominated as a guardian, even if they’re well ready and willing to serve. Some courts have background check requirements, and this can be particularly harmful for communities of color where someone who’s actually got a very supportive and caring relationship for the disabled person might have an old conviction for check fraud or shoplifting or drug possession because communities of color are, tend to be over policed and over prosecuted. So people might have an old conviction and the court might consider that a disqualifier and appoint an institutional guardian in that case as well.
Certainly, if you have a long list of alternative suggestions that can make it less likely for an institutional guardian to be appointed, but again, especially if there’s family conflict or conflict after you’re gone over what’s best for a particular person, courts tend to want to appoint a third party in those cases.
And people can end up with public guardians in that situation.
Brynne: Gotcha. Gotcha.
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Brynne: Now we have spent a little bit of time talking about the negative side of this, but I do want to let people know that there is a better way. And in some states I understand it’s even a legal alternative, so that solution is supported decision making. And I’m wondering if you can just explain what that is both as, you know, a lived experience and just as a legal mechanism in the states where it is recognized.
Sam: Supported decision making is a model that enables a person to choose who supports them with different decisions.
And it can even be multiple different people, helping with different kinds of decisions. That person with a disability still retains the ability to make a final decision, but the supporter is there to help them understand the decisions, help, especially if there’s a communication disability, the supporter can help provide communication supports and communicate the decision to other people.
And the supporter can help carry out decisions as well. They can really essentially provide some of the more important functions of a guardian without taking away a person’s right to make decisions or having a court adjudication that the person lacks capacity, which might follow them around. Supported decision making can happen in a variety of aspects of life.
And one really high profile example that people can look up is a case of Jenny Hatch. Jenny Hatch was a 20 something with down syndrome. Who was living in the community and working at a church thrift store. She was doing really well. But at some point she had an accident on her bike and her birth parents I guess, became concerned or her mother and her stepfather became concerned that she couldn’t make decisions on her own.
They petitioned for guardianship because there was a, a significant dispute over whether the parents were acting in her best interest, the court did what I just said that often does, and it appointed an institutional guardian. The institutional guardian for ease of administration, forced her to move into a group home far away from where she had been living.
She couldn’t keep her job at the thrift store. She was extremely depressed. Through advocacy by disability rights organizations, including Quality Trust, which is based in DC, Jenny hatch was able to escape guardianship. It was a very unusual outcome. And the court acknowledged that she was going to receive decision-making support from her friends who worked with her at the thrift store and with whom she had, she wanted to move in with them.
So these friends helped her set a budget, make decisions about how to use her cell phone so that she would keep her phone fees within her budget. They helped her talk through medical decisions and really any decision that she wanted to make in her life. And she was able to successfully leave the group home, go back to her job and have a, a really great self-determined life.
And she still goes around talking about how important it was to her to regain that autonomy.
Brynne: That is awesome. I am just so happy that things turned out that way for her. And it sounds like maybe potentially set a little bit of a positive precedent, perhaps. I’m wondering with supported decision-making like, what does that process look like?
So we’ve talked about a little bit, how guardianship, you know, you’ll end up in the courtroom, you end up essentially prosecuting your own child. Um, that’s sounds awful. So is supported decision-making what does, I guess, what does that kind of legal process look like? Like how would parents engage with that?
Sam: It’s a very flexible, legal process. And one of the things, one of the barriers I’d say to supported decision making is that people like having that piece of paper in their hand saying, I’m the guardian. With supported decision-making unless you’re in one of those states that explicitly recognizes supported decision-making arrangements, it can be a little bit harder to get that formality of a legal document.
You can still execute a document that says, you know, here’s our understanding. You’re going to make your own decisions. Here’s who is going to be here to help you and help you make those decisions. But that document doesn’t always have what I call an enforceable status.
One of the barriers is that you can’t, you know, a lot of people do supported decision-making through executing documents, like a healthcare proxy and a power of attorney where they name a person who they want to help them with financial issues, healthcare issues, and so forth. And they’ll say, you know, this person, isn’t going to make decisions for me. They’re going to use supported decision-making, but they still have a little document in hand in order to do it.
One barrier is that if you have a previous finding that the person doesn’t have legal capacity, then they won’t be allowed to execute a document like that and have it have legal effect. Unless the finding of legal capacity is set aside. Again, unless there’s enabling legislation in your state. Another problem is that some states require you to notarize those types of forms and a notary based on their stereotypes of people with intellectual and developmental disabilities might say, I’m not notarizing this.
I don’t think that the person has capacity to sign. Even without those kinds of forms though, people often really make it work. For example, they’ll work in the medical system. There’s often laws that help allow a family member to help with medical decisions without guardianship. There’s sort of what they call healthcare decision pacts or healthcare decision law that let people help without a guardianship being in place.
And you can have a supported decision-making arrangement that will enable doctors to agree that, you know, this decision, if both the patient and their next of kin, both agree that this is the correct medical decision, they’ll be able to go forward and provide treatment. We’ll see some situations where people make it work with banks or other legal institutions, either by, you know, getting a trust in place with the supporter as a trustee, or by working with the banker to, you know, help the banker recognize that this person has capacity to make a decision with support.
We have taken the position that allowing people to use supported decision-making is a reasonable accommodation under the ADA. So if a bank refuses to let someone use a banking service if they’re using supported decision-making, we’ll say that that’s potentially disability discrimination. So there is a lot of different ways to do it.
Some people use supported decision-making with no real special legal document in place. Some people do have a legal document. If it’s a state that has a supported decision-making law and, um, other people have a legal document, like a healthcare power of attorney or a financial power of attorney that sort of puts a legal stamp on the relationship.
Brynne: Gotcha. Gotcha. And I have so many questions, Sam. I’m so excited you’re here. So first off, just real quick, I’m wondering, is this a handful of, it sounds like whether there’s a legal mechanism for it in your state or not, you should consider it and try to line up paperwork if that is possible within your state.
But how many states have a defined legal pathway for this? Is it a handful of states? Is it the majority or what does that look like?
Sam: You know, the number keeps changing. It’s definitely more than a handful and less than a majority at this point. I can’t, I don’t want to give you an exact number because I am sure that it will be off because it keeps changing and I keep forgetting the exact number.
But if you want to look up your own state and find out if there is a supported decision-making in your state, you can go to a website called supporteddecisionmaking.org. And the first thing you see on that website, is a big map that helps you find out about the state of supported decision-making in your state.
And there are some like Virginia and New York where there isn’t legislation recognizing supported decision making, but there are court cases like Jenny Hatch’s court case that recognize the right to support a decision making. So that really makes a big difference if you’re in one of those states, too.
Brynne: Absolutely. Absolutely. And if, I guess we talked a little bit about being resourced thin, right. Um, whether we’re talking about employment discrimination or forced poverty as enforced by a lot of our healthcare and disability programs in this country, we do see also a trend that it’s not the center of our conversation, right?
But if we’re talking about situations where parents are involved, we do see a trend of maternal income being lower. So if we’re talking about, you know, I want to move forward with this, I want to do this positively. I want to do the right thing. And I, I suppose you would run into the same thing if you were pursuing guardianship as well.
But when we’re talking about interacting with the legal system, a lot of times, the best way to do it is with legal guidance. So for people who are a little resource thin monetarily, are there organizations or ways to pursue these legal pathways, where there might be financial support or lawyers who work pro bono? How would you kind of figure that out if you don’t have those resources immediately available to you?
Sam: Absolutely. Well, one of the places I would absolutely start at is the same website I was mentioning earlier, supporteddecisionmaking. org, um, because they have a huge resource library, a set of webinars, and you can reach out to them specifically. I don’t know if they have an attorney referral service, but they are a really great source of resources on how to, how to do this.
It’s very fortunate that supported decision making doesn’t require you to go to court. So even if you do choose to find an attorney who can help you put some documents together and advise you on potential challenges, you still can manage to avoid some of the biggest fees, which would be associated with actually having to show up in court and go through a whole legal proceeding.
Finally, another really good source of information is your state protection and advocacy organization. Every state has them, and many of them have projects to promote supported decision-making. You can find your state protection and advocacy organization at ndrn.org, the national disability resource network ndrn.org. They have a map, uh, that will show you where your it’s there’s a little link at the top of the website that says, find your PNA, which means find your protection and advocacy.
That’s a great place to go. Another great place to go is Center for Public Representation. They don’t represent people nationwide. But they have tons of resources and they might be able to help point you in the right direction.
And they are at center for public rep like representation, but shortened to rep so centerforpublicrep.org.
Brynne: Awesome. Thank you so much for those resources. I can see how some parents might be at a loss, just having never been exposed to this idea before, particularly if communication is a concern. We know that are non-verbal children, that has no bearing on their ability to make decisions for themselves.
But for parents who might be in a situation where they have a non-verbal autistic child, as they pursue this process of supported decision-making what does supporting look like? Like how can they do that in a way that is constructive? Just because they might not have experience with, okay, how do I communicate this properly?
So how can they do that properly, I guess?
Sam: That’s a really good question. And it is something that people are still working on getting better guidance on best practices for how to support decision making in people who have significant communication barriers. It is absolutely done. There are families I know of personally where there is a significant, significant communication barrier, but supported decision-making is still used.
A few pointers, and this is absolutely not meant to be exhaustive and definitely continue looking at resources and seeking out additional legal advice. But it’s really good to start with an inventory of how people communicate. We know that everyone communicates and it might not be through words, go through a little bit of a planning and preparation process where you ask yourself, how do I know if my loved one understands what I’m telling them?
How do I know if my loved one is happy with a situation? How do I know if my loved one is very unhappy with a situation? If someone is unhappy, how do I find out what they’re unhappy about? And it can really be, everyone’s so unique. A lot of the time the answers are some people use assistive communication, but some people use gestures or behavior or facial expressions or sounds.
And all of those are very valid. As long as you sort of go through the process of really thinking. How am I going to discern what, when I have this sort of conversation with my loved one, about a choice, how am I going to really see what they like and don’t like? And sometimes it might not even be a conversation.
I know people who have, for example, let’s say they’re trying to find a place for their loved one to live. It might not work to simply talk to them about the different options for a place to live. It might be necessary to bring them on a site visit and really pay very close attention to how they’re responding to each place they visit.
And if you are able, sometimes that is really a pretty good way of being able to understand with some degree of certainty, what a person’s choice and preference is even if they have a pretty significant communication challenge. Sometimes it’s also a matter of, you know, you start with an inventory about what you understand to be your loved one’s goals and you help identify choices that you think would be, would be good ways of meeting those goals.
Then you present those choices and, and see how your loved one responds. It can vary so wildly depending on what the choice is exactly how your loved one communicates. But I just want to emphasize that supported decision-making is a flexible model. It is something that should be able to, as long as you’re able to get a really good sense of a person’s likes and dislikes, it should be something that can still be done.
Even if a person doesn’t have a reliable way of communicating using language.
Brynne: Gotcha. Gotcha. Thank you for that. Now, when we were talking about guardianship, there were potential long-term consequences and it’s extremely difficult to litigate your way out of that situation. I’m wondering with supported decision-making do we see similar or any negative long-term consequences as we do in guardianship?
And then also, can this be an incremental pathway as well? Again, recognizing that in some states you’re not even doing this legally, um, but it will be a legal process, but in the states, I guess where it is, is there a way to litigate to release yourself from that supported decision making with the courts?
Sam: Well, just to be clear, it’s never illegal to do it. I don’t think it’s very, sometimes people have a hard time understanding that when we say it’s not a legal process, it doesn’t mean it’s illegal. It’s just that there is no set form that has specific legal recognition. It doesn’t go through a court, et cetera.
So I want to make that really clear. I know that sometimes people who aren’t lawyers can get confused by that. It can be incremental. In the Justice for Jenny case, for example, the final court order or the second to final court order that recognized her right to supported decision-making appointed her supporters as guardians for a year said that the goal was to transition her away from guardianship using supported decision-making.
It said that her guardians were to act as supported decision makers during that year, even though legally, they were guardians. And at the end of the year, because she is, was very successful, it, the court terminated the guardianship. So it’s absolutely something that you can do as an off ramp from guardianship.
The nice thing about supported decision-making is that, you know, with the exception of situations where a court has somehow intervened and appointed someone as a supported decision maker, which is extremely rare, there’s no court adjudication saying that a person lacks capacity. And if a person wanted to just stop using supported decision-making tomorrow, they could do it.
And they would still be able to act without support from a legal standpoint, if that’s what they wanted. They might run into challenges, talking to doctors and expressing to doctors that they’re making an, you know, that they’re capable of making an informed decision. But unfortunately, that’s really more about doctors and less about a person’s history of using decision-making supports.
Unfortunately. So it’s really not the supported decision-making arrangement that is causing the, the access barrier, but rather that, you know, if doctors or other people they might interact with perceive them as lacking capacity then it might be a little bit harder to act independently. One thing that can really help in order to help prepare people for maybe graduating from supported decision-making and also help protect people from being put under guardianship at some later date, if their initial supporter passes away or is unable to serve is to really document how the supported decision-making arrangement works.
And I think it’s especially important for people with communication challenges. Uh, the supporter can really keep a record of, you know, here’s how we made this decision. Here’s how we made that decision. Here’s the whole process. And here’s how I understood what my loved one was trying to tell me about their choice.
And when, when you’ve gone through that process, it makes it easier for people to either choose a new supporter. Or to show that they were really the one who is making a final decision, that they can make decisions if they choose to eventually no longer need a supporter in order to do it.
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Brynne: Now this might not be a thing I don’t know. But are there any states that don’t have a legal pathway to guardianships specifically? Like, are there any states that are like ultra progressive and they’re like, we’re not even doing the guardianship anymore, or is that a legal pathway that exists everywhere in this country?
Sam: In this country it’s everywhere.
Although it gets called different things in certain states. In California, for example, it’s always called conservatorship. In some states, conservatorship means just guardianship over finances and guardianship is, you know, with respect to a person’s, you know, life, uh, medical care and other affairs. In Louisiana, it’s called interdiction because Louisiana follows Napoleonic law.
So Louisiana is a little bit of a weirdo state. There are some countries though that have abolished guardianship and/or significantly restricted it. Some states in Canada have personal representative laws that essentially make supported decision-making the default. I believe Sweden has done some really interesting stuff with getting rid of guardianship.
And we have a resource on our website called The Right to Make Choices, that includes a little bit of a roundup of how different countries and districts within other countries have dealt with this in order to try and reduce reliance on guardianship or even abolish it.
Brynne: Amazing. Amazing. And guys, we will link to that in the show notes.
There’s a lot of resources today that we’ve been talking about that will be listed there. So make sure to check those out today, especially. Now one other aspect of this that I did want to talk about and just kind of figure out how it fits into all of this is powers of attorney. How do those kind of fit into our picture here when we’re talking about supported decision-making and, and trying to make the most ethical decisions for our children.
Sam: Power of attorney can be really useful.
Especially in states that don’t have explicit legal recognition of supported decision-making. Powers of attorney give another person, the authority to act in the place of the principal. And the principal would be the person with a disability in this case. Powers of attorney typically historically, would give people pretty unfettered authority to act in your place.
And so they’re not historically what we would call true supported decision-making. It would you’re really sort of substituting a person for you, but because powers of attorney can easily be revoked, in practice they can be very effective, supported decision making arrangements. And if someone is unhappy with their power of attorney and thinks the power of attorney is acting without consulting them, they can revoke the power of attorney.
You can also put expectations in the power of attorney document and say I really expect my attorney-in-fact, that’s what they’re usually called, to consult with me as much as they can before acting. It won’t necessarily mean that you can take back what your attorney-in-fact has done, but you could use that as grounds for revocation in a particularly egregious context, the attorney in fact, could face pretty serious liability if they violate the terms of the agreement on purpose.
So a lot of people do use powers of attorney for supported decision-making. And often what people will say is that they like that it allows the attorney in fact, to act without them in certain situations. One really good example is banking. Let’s say you talked through with your supporter, what you want to do.
You want to move some money from one bank account to another, or you want to withdraw some money from a bank account. But a lot of people with disabilities don’t want to go to the bank. They want to stay at home. They find the bank confusing, overwhelming, disorienting, just generally an unpleasant place to be.
The power of attorney allows you to go to the bank for the person and do what you mutually agreed would be a good idea to do. So that’s very convenient for a lot of people who otherwise would not necessarily want to be that personally involved in carrying out some of their decisions.
Brynne: For sure, for sure.
And I love how it preserves that person’s autonomy and that they can actually kind of revoke that if at any point they’re unhappy or uncomfortable with their decision maker. That’s really cool.
Sam: Yeah. I want to make one distinction really clear because sometimes this trips people up. There are two kinds of power of attorney for financial issues.
One is called a durable power of attorney, and one is called a regular power of attorney or a traditional power of attorney. A traditional power of attorney names someone who can do things for you right now. And in fact, it doesn’t require any kind of finding of incapacity. Non-disabled people use traditional powers of attorney all the time in order to appoint people to help manage their financial affairs.
They don’t, you know, don’t want someone don’t want to do the work themselves. They name an agent to do it for them. That is really useful for people who don’t want there to be any kind of finding of incapacity. And they want to have someone helping them right now. A durable power of attorney often only becomes effective if a person becomes unable to man manage their affairs in the future.
And sometimes people will need both. For example, if you have a disability that’s episodic or that causes more symptoms, some days fewer symptoms, other days, you might worry that in the future, someone might think that you don’t have capacity to manage your own affairs.
If you name someone as your durable power of attorney, that person can just start helping you do, uh, you know, manage your financial affairs without having to go to court without having a guardian appointed. And it’s a really good future planning tool. You can do both. You can say this person is my attorney right now, and um, not, not attorney, but attorney in fact. They don’t have to be a real lawyer. It’s confusing to people.
But you can say this person is my attorney in fact right now. And they’re also my durable power of attorney. So if I become incapacitated in the future, they’re going to still continue to act on my behalf and I want them and expect them to use supported decision-making to the greatest extent that they can, even if I’m declared at some future time incapable of managing my affairs.
Brynne: That sounds like really, really great alternative to these guardianship practices that are kind of embedded in our law system.
Wow. That seems to solve alot.
Sam: I recommend, you know, people really need to recognize that even if you’re not disabled right now, you can always become disabled. And especially as people age, it’s a very important future planning tool in order to make sure that your family won’t need to seek guardianship over you.
So I highly recommend that everyone have at least a durable power of attorney somewhere in their files so that they can get help if they ever need it.
Brynne: Absolutely. That is such a huge thing. If you were looking at setting up some of these legal mechanisms, whether it be a power of attorney, whether you’re in a state that does have an on-ramp to supported decision-making, at what age should parents start thinking about this?
I know there’s some things with our kids that we have to start thinking about really early, just because of like wait-lists and everything, but in this legal setting, I guess when should parents start considering that and preparing?
Sam: It’s never too early. I would say that, you know, you have different steps at different ages. Really at, almost as early an age as you possibly can, I would start engaging in supported decision-making on anything you can. Y know, I, I do supported decision making with my three-year-old, where I help her understand her choices within a specific range, and she makes a choice and then we do it and getting that kind of practice and developing that relationship where your child knows that they can rely on you to help them make decisions and support the decisions they make.
There’s really no age that’s too early to start doing that. In terms of communication and documenting how a person communicates. I think that’s also something that’s really never too early to start, especially if someone has significant communication needs.
Making sure, and this is something that people often have a lot of trouble with. If someone has significant communication needs, making sure that at least some other people, other than you can reliably communicate with your child as well as you can. That’s really important. Sometimes we’ll see people who, you know, they can understand their own child to a certain extent, but others can’t.
And that’s a really important future planning issue. If you’re going to get people to the point where they can make their own decisions with support. And as people get older, really, I think that this is something that should be addressed much more frequently in IDEA transition planning. Transition planning is supposed to be for the purposes of planning a person’s adulthood.
And what’s more fundamental than making sure that a person can start making their own decisions when they’re an adult? So I think that should definitely be addressed in IDEA transition plan.
And as people get closer and closer to 18, that’s when you really want to start getting any documents you need in place so that you can have them ready to go by a person’s 18th birthday, definitely leave at least a year or maybe two to find a lawyer, find one who really understands the importance of autonomy and who is on board with setting up supported decision-making and go through that future planning process.
That can really take time. So I would, I would start that at least a few years before a person turns 18.
Brynne: Gotcha. Gotcha. And when we’re talking about IDEA transition periods, are we talking about, is that a process then that you would engage with with your school or your child’s school? So that’s like a, uh, it is legal process, but it’s not one you’d go to a courtroom to pursue. That’s something that’s going to happen in that school setting.
Sam: Exactly. It’s not strictly a legal process because it’s legally mandated that the school do it, but it doesn’t have direct legal effect. It’s just a, you know, really a planning process that lets people bring a whole planning team together to, to think through a person’s support needs, communication needs and identify a plan to help people start making their decisions as adults.
We also recommend that people really start doing this early on with their pediatrician in order to make sure that people are ready to start making their own healthcare decisions when they turn 18. And that can take several years to get people up to speed and get people to the point where they’re ready to take the lead in healthcare decisions and their own healthcare decisions.
I would really start that at least as soon as someone becomes a teenager, getting them more and more to the point where they can understand the process of making medical decisions, they can communicate with their doctor or develop a plan for supported communication with a doctor and develop a plan for making medical decisions.
Brynne: Oh, my gosh, that’s such a good point. I wouldn’t have even thought of that. Thank you. Thank you.
Sam: We actually have a toolkit on the healthcare transition to adulthood on our website as well.
Brynne: Awesome. Awesome. And we will, again, guys, check out those show notes today because there’s going to be a lot of great resources in there.
And now for parents who want to learn more about this, please guys, definitely go to the Autistic Self-Advocacy Network’s website and check out these resources. But for parents who want to further support your organization in your advocacy efforts on this issue, particularly on guardianship and really getting supported decision making more broadly recognized as a viable and a better alternative, how can we support you?
Because guys, as parents, I don’t think that it’s always a good idea for us to go out on our own to do this because we just don’t have the lived experience. Not all of us have the legal background and organizations like the Autistic Self-Advocacy Network, they do have all of that.
So I think that what we should be doing is really supporting those efforts rather than trying to go out and recreate the wheel on our own. So are there ways that we can do that? Are there ways that we can support you in these efforts?
Sam: One of the most important ways from a policy perspective is to really be an advocate in your state for supported decision-making laws and recognition of supported decision-making.
Again, most states still don’t directly recognize supported decision making. If you go on supporteddecisionmaking.org and you find that your state does not have a supported decision making law, it can be so helpful for people to hear from parents, um, state legislators, to hear from parents that this is something they really want, and that it is a priority and that they should introduce a version of supported decision making legislation in their state. That will really, really help support your local self-advocacy organizations.
There are local self-advocacy organizations in many states, and that includes People First chapters. It includes Autistic Self Advocacy organizations, and it includes what we call Centers for Independent Living, many of which are pretty active in making sure that people have access to autonomy and access to supported decision-making.
Be a voice for supported decision-making and be a resource to other parents because a lot of the time parents want to do what’s best for their kids. And they’re looking to other people in their situation for advice on what is the best choice and being, if you’ve chosen to implement supported decision making in your life, it can be really helpful to just be very clear about that to other people so that they know that that’s an option and they can look to you as a resource on, on how to do it and why to do it.
Brynne: Awesome. Awesome. And guys let’s go out and do that.
Because we have heard these stories so often from our listenership, I just want to take a second here to make sure that our listenership knows that the efforts of this episode are not to demonize you or the decisions you made around guardianship.
Maybe even in your specific situation, maybe it was the only way that you could move forward or that he knew to move forward. And Sam, I’m just wondering for parents who have kind of already gone through this process and are listening and are like, oh no, I wish I had done supported decision making instead of guardianship.
I didn’t even know this was a thing. What would you say to parents who are kind of, they’re already in that situation where they are their child’s guardian, but what are the best ways for them to move forward now, having the information that they do have at this point?
Sam: It’s always a good idea, you know, even when people are legally appointed as a guardian, they can still start implementing a lot of the methods of supported decision-making.
We wouldn’t call it full supportive decision-making if a person is under guardianship. You can still start with the process of really trying to make your loved one the decision-maker in decisions around their life. And as you do that and get more practiced in it, it does become easier. I wouldn’t say it’s super easy in any case, but it will become easier over time to build the case for release from a guardianship.
So that is something that I would recommend. I would also recommend reaching out again to supporteddecisionmaking.org, to your protection and advocacy organization or any of the other organizations I talked about earlier, for advice on how to start transitioning people to support a decision making.
If that’s what you think would be a better idea. And I really can’t recommend this enough, even if you already have guardianship, it will make it so much easier to do future planning when you have someone who is starting to take control over their decisions and go through the process of choosing different supporters, who can help them with decisions who might be able to step in as it becomes harder for you to serve that role.
Brynne: Awesome. Now we kind of like end these episodes by just saying that we, Joyce and I, we don’t know what we don’t know. So we are just so grateful and thankful that you’re here with us today. And I just want to take a second to ask if there’s anything that we haven’t discussed, that you think it’s important for our listeners to know about this topic?
Sam: I think it’s just so important for people to recognize what I would call the protective aspects of autonomy. When people are more self-determined and they’re more involved in decisions that are about them, they’re often actually at a much lower risk of abuse, neglect, or exploitation than people who aren’t used to making their own decisions.
And aren’t used to having a say about things in their own life. We’ve seen research showing for example, that women with developmental disabilities who score higher on self-determination on surveys are less likely to report domestic abuse, which is really, really important for people to hear. Because I truly believe that all parents, including people who are seeking guardianship, are really motivated by protecting their kids and wanting to make their kids as safe as possible.
And I just really encourage people to think about how actually safety is much better served when we’re preparing people to make decisions about their own lives.
Brynne: A thousand percent, a thousand percent. And Sam, I’m wondering if you can tell us a little bit about where can people find you and is there anywhere you suggest they check out further work?
Sam: You can always check us out at autisticadvocacy.org.
Brynne: Thank you so much to Sam and to all of you for listening. We hope this episode helps you as you navigate the issue of supported decision-making and encourage everyone to start getting their documentation together today. To keep up on the latest Mom Autism Money news, be sure to visit our website MomAutismMoney.com and sign up for the email list.
You can also follow along by subscribing to Mom Autism Money on apple podcasts, Spotify, Google podcasts, Stitcher, or whatever your listening platform of choice may be. We’ll see you all next week on Tuesday for a discussion about Medicaid access and research. Take care.