JOSH FEDER: Welcome to another special episode of The Carlat Psychiatry Podcast. I'm Dr. Josh Feder, the editor-in-chief of The Carlat Child Psychiatry Report and co-author of the second edition of The Child Medication Fact. Book for Psychiatric Practice and our other book, Prescribing Psychotropics 

MARA GOVERMAN: And I'm Mara Goverman, a licensed clinical social worker in Southern California with a private practice, and an avid reader of The Carlat Psychiatry Reports. Today, we are discussing how clinicians can support adults with developmental disabilities as they transition into independent decision-making. This is a really necessary topic, especially as more young adults with developmental disabilities reach legal adulthood and need guidance on decision-making.

JOSH FEDER: Many of our patients have challenges in making complex decisions, whether medical, financial, or personal. Some need full guardianship, while others benefit from limited support, it's a spectrum.

MARA GOVERMAN: And because every patient is different, we need to assess their capacity on a case-by-case basis. One of the first things we look at is whether they can understand and weigh the risks and benefits of a decision, communicate their choice, and appreciate the consequences. 

JOSH FEDER: We have different legal and clinical tools available guardianship; for example, is the most restrictive and involves court approval. It gives someone else full decision-making authority, but it's not always necessary. I've had so many different cases where you've got a kid who can make some choices about some things, right? But, because people are worried, they get a conservatorship over them, and then you've got somebody who really, isn't having any choice in their life. On the other hand, I have people who make terrible decisions. They walk, they talk, they actually have a job, but the things that they're doing are truly problematic. They have no idea how to manage their money, and worse, sometimes they get, you know, kind of bamboozled into doing illegal things, and then we've got a criminal case going on. And for those people, or when you see the writing on the wall, sometimes the conservatorship is really helpful because then maybe you're preventing a huge problem. I mean, once you're incarcerated, it's hard to say, Oh, he was incompetent. It's really hard to say it after the fact, for somebody who appears to be, able to make these kinds of decisions.  So it's a kind of problem that demands our full attention and thoughtfulness. 

MARA GOVERMAN: And as part of the informed consent process, understanding and educating the family about financial resources and the fortitude to see that process through is really important because it, as you said, it is not easy in both of those areas, to be successful. 

JOSH FEDER: So we've talked a little bit about having a guardianship, you know, that's kind of full, and of course, the opposite is having full ability to make any decisions. 

MARA GOVERMAN: A limited conservatorship is the middle ground. It allows the individual to retain some rights, while providing structured support in specific areas, such as healthcare, finances, or living arrangements. 

JOSH FEDER: And the place where I usually see people retaining their rights, voting always. 

MARA GOVERMAN: Mm-hmm. 

JOSH FEDER: And also, a lot of times, educational decision-making like what they want to study, right? Things like that. The places where I think we end up with limited conservatorships having more input from the conservators are issues of healthcare when they're not able to decide about whether or not they should be on medicine or financial things when they're not responsible, or perhaps if they wanna get married to somebody and it looks like they're being mistreated, and that's real tricky too, 'cause interpersonal intimate relationships, some families really wanna encourage the experience without having the danger of somebody being like mistreated by being married and then kind of, you know, enslaved, is that a bad word for it? In somebody else's home and not having any freedom. So again, tricky stuff. For those who don't require court-appointed oversight at all there's a healthcare power of attorney, which lets a designated person step in for medical decisions if needed. We should all have these, right? So if we get sick, somebody can come in and help make our decisions, and so our young adults, adults with developmental challenges need these too, but it's really useful for individuals with fluctuating capacity, like people with co-occurring psychiatric conditions that can become exacerbated and remit, I think about bipolar, sometimes, psychotic conditions, things like that, and the health power of attorneys good to have there so you can step in and help out.

MARA GOVERMAN: I would add anxiety and OCD create huge stumbling blocks for people if you're not thinking clearly and you're not common-settled enough. To take in that information and make the right decisions. 

JOSH FEDER: Yes. Severe cases of OCD seem most psychotic. The same thing can happen for very, very severe anxiety, but you make a really good point because we've seen some pretty impacted people at times; and again, we're talking here today mostly about people with developmental challenges, and sometimes, in those people, things like OCD and anxiety can be very prominent. 

MARA GOVERMAN: Another more recent and innovative option is supported decision-making. This approach empowers the individual by allowing them to make their own choices with input from trusted advisors. It's a great way to respect autonomy while ensuring guidance. 

JOSH FEDER: Okay, so this has become really big, especially in the neurodiversity community where people are saying, look, let's for instance, autistic people make their own choices, and let's help them to do that, let's break things down and make it more possible to be able to understand these things because you can do that, right? Like, sometimes if someone is thinking in a pretty concrete way, they might have trouble like weighing the risks and benefits of, I don't know, like a medication for a condition like depression, something like that, and yet if you do kind of lay it out like, okay, so you've been on this medication, and we've had a couple times when we've tried to go down on it or off it, and if you remember, you know, we've got the records, if you remember that you really got very depressed, remember this is what you said, and this is what was going on, kind of remind them, kind of laying it all out. Then they're like, oh yeah, we can do that, and so supported decision-making is set up in a way that you sign a document, and it's not overseen by the court, but it can be notarized in some states. It just basically says I'm going to ask for help, and you like name, the people who tend to help you with your decision making, and it helps you if you want to go and like make a big purchase, and the people looking at you say, can this guy make a decision? And they say, well, hang on, I have people helping me, and I do have the right to do that. They've got a document that supports their autonomy when making that purchase. 

MARA GOVERMAN: In my humble opinion, one of the things I got out of that is to have a specific contract in place that is both agreed upon by parties, so that it's not a surprise what steps and structures are going to be supported and agreed upon to get to that goal.

JOSH FEDER: Our role as clinicians includes helping patients and families understand these options early, ideally before the patient turns 18. So, starting these conversations maybe 18 to 20 months in advance can prevent rushed decisions and ensure the right level of support is in place. 

MARA GOVERMAN: We also could adapt our communication styles. Some patients process information differently, so we're going to try and use clear language, visual aids, and assistive communication devices can make big differences in how they understand their choices, and I guess what we're talking about is understanding the profile of your clients individual needs and which assistance works best for them to be sure that they're processing and understanding what we're talking about.

JOSH FEDER: Yeah, and another technique is breaking down pros and cons in really simple terms. Instead of medical jargon, we can say, Let's list the good and bad things that might happen if you do this. I tend to use language that any 8-year-old could understand in all my writing, and everything that I do, really doing that here. So that you're not using big jargon words right; and slowing down the conversation itself is really helpful to give more processing time because a lot of times, people need that time to process the information. 

MARA GOVERMAN: I just would like to add the other tool that I like to use sometimes is to ask people to tell me what they thought I said, and get an understanding of whether my strategies was working and was meaningful for them and that could just add a whole other layer of clinical information.

JOSH FEDER: Good point. 

MARA GOVERMAN: Frequently, no one listens to a disabled person to hear what they want. Whenever possible, we should always try to include private conversations with the patient. Family input is valuable, but we need to hear directly from the individual to understand their perspective. 

JOSH FEDER: Our goal is to balance autonomy with protection using the least restrictive means necessary. Mara, before we wrap up, any final thoughts? 

MARA GOVERMAN: It has to be a flexible give and take, showing respect to what the client wants and what the family wants and what they're able to do to get a working plan that both parties can agree to and support. 

JOSH FEDER: And that can change, right?

MARA GOVERMAN: Mm-hmm. 

JOSH FEDER: So we've had times when people's condition changes over time, for better or for worse. So, think about this we're thinking about young adults age 18, right? And you get that extra myelination of your prefrontal cortex over a couple years, you may have somebody who isn't very good at making decisions, and you need to revisit it because they're much better demonstrating.

MARA GOVERMAN: Higher levels of thinking.

JOSH FEDER: Yeah, in a couple of years later. So it's gotta be a dynamic, flexible process. 

MARA GOVERMAN: Families need to plan early before a person becomes a legal adult, and clinicians should approach these discussions with patients' flexibility and a commitment to individualized care. You can find more information on this topic in our January/February/March 2024 newsletter. 

JOSH FEDER: Everything from Carlat Publishing is independently researched and produced. There's no funding from the pharmaceutical industry. 

MARA GOVERMAN: The newsletters and books we produce depend entirely on reader support. There are no ads, and our authors don't receive industry funding. That helps us bring you unbiased information you can trust. 

JOSH FEDER: I hope this conversation helps our listeners make informed choices. If you found this discussion helpful, subscribe for more episodes on mental health and psychiatric care, and please share it with others who may need to hear this message, and remember, when we look for good things, more can follow.