Medical guardianship for mentally ill young adult?
September 30, 2024 3:20 PM Subscribe
If you have sought medical guardianship for a mentally ill young adult offspring, I'd love to hear your experience with it. Or, if you know of any research or writing by experts about its effectiveness, I'd like to be pointed to it.
My 23-year-old daughter has schizophrenia or something similar, with paranoia, hearing voices, and so on. She recently came as close as she's ever come to losing her grip on reality, having a long episode where she didn't know where she was, and saw blood everywhere if she uncovered her eyes. She is currently in the hospital for the second time this month, and the fourth time this year, and the nth time since her mental illness began more or less at puberty.
She has never stayed in treatment except when under court supervision, which ended earlier this year, leading to almost immediate decompensation. She fails to stay on medications or in therapy.
My therapist, and a friend whose work is focused on young adults who aren't able to live independently, both think I (or I and her dad) should petition for medical guardianship.
It feels really big to consider doing this. I have several hesitations:
1. She will hate us for it. (She has hated us for things before, and I'm Ok with that if I feel confident I'm making the right, or the only available, choice).
2. I question how effective it will be. When she was still a minor, we found that it was impossible to force her to stay on meds or go to therapy appointments; her resistance is very strong. I'm not sure, even if we had the power to make medical decisions for her, that we would be able to make her comply with them. If this were true, the violation of her autonomy might not have been worth it.
3. I don't know how effective medical guardianship is for families like ours. Does it improve treatment compliance and mental health outcomes in most cases? Or is it a hail mary that fails as often as (or more often than) not?
I would appreciate hearing your own experiences with it, either as the young adult in question or their parents. And if you know of any literature on the topic, I'd love to be pointed to it.
A thing that just occurred to me as I was writing this: How do you enforce a medical proxy like this? What, if any, backing is there for parents trying to exercise guardianship on an adult child?
My 23-year-old daughter has schizophrenia or something similar, with paranoia, hearing voices, and so on. She recently came as close as she's ever come to losing her grip on reality, having a long episode where she didn't know where she was, and saw blood everywhere if she uncovered her eyes. She is currently in the hospital for the second time this month, and the fourth time this year, and the nth time since her mental illness began more or less at puberty.
She has never stayed in treatment except when under court supervision, which ended earlier this year, leading to almost immediate decompensation. She fails to stay on medications or in therapy.
My therapist, and a friend whose work is focused on young adults who aren't able to live independently, both think I (or I and her dad) should petition for medical guardianship.
It feels really big to consider doing this. I have several hesitations:
1. She will hate us for it. (She has hated us for things before, and I'm Ok with that if I feel confident I'm making the right, or the only available, choice).
2. I question how effective it will be. When she was still a minor, we found that it was impossible to force her to stay on meds or go to therapy appointments; her resistance is very strong. I'm not sure, even if we had the power to make medical decisions for her, that we would be able to make her comply with them. If this were true, the violation of her autonomy might not have been worth it.
3. I don't know how effective medical guardianship is for families like ours. Does it improve treatment compliance and mental health outcomes in most cases? Or is it a hail mary that fails as often as (or more often than) not?
I would appreciate hearing your own experiences with it, either as the young adult in question or their parents. And if you know of any literature on the topic, I'd love to be pointed to it.
A thing that just occurred to me as I was writing this: How do you enforce a medical proxy like this? What, if any, backing is there for parents trying to exercise guardianship on an adult child?
My sister has schizophrenia.
I don't have guardianship, but I do have healthcare and financial power of attorney so that her providers (medical, etc.) can legally openly share information with me when I request it, and so that I can manage her finances (for example, I have legal access to her bank account, and I balance her checking account each month and monitor her savings account).
I don't know whether guardianship improves treatment compliance and mental health outcomes, but I do know that it requires those who have power in the person's life (for example, their DSHS case manager) to include the guardian in, and keep the guardian apprised of, everything that transpires. A guardian can also make decisions such as where the person will live, who will provide medical care, etc.
I chose not to consider guardianship because, at least in my state for sure, and possibly in all states, if the person subject to guardianship is a registered voter, the county auditor will cancel that person's voter registration. In other words, if you have a guardian it signifies that you are so mentally impaired that you are incapable of voting. My sister is compliant with her meds (it is absolutely miraculous what meds can do) and voting is very important to her, and so that is the main reason I didn't even consider guardianship.
Google says (and this has been my experience in researching guardianship): "In general, the court may grant the guardian the power to make medical decisions, determine living arrangements, social settings, manage property, and handle financial affairs such as banking, investments, and expenses, including household and long-term care costs and taxes."
My sister lives in an adult group home where they administer her medication for her. The gate is locked so that those who need to remain on the premises for their own safety cannot leave independently. Fortunately, my sister's medication is effective enough that she is allowed quite a bit of independence. She goes for walks independently, and takes the local shuttle for the disabled independently, etc.
Hope this helps!
posted by SageTrail at 6:14 PM on September 30 [4 favorites]
I don't have guardianship, but I do have healthcare and financial power of attorney so that her providers (medical, etc.) can legally openly share information with me when I request it, and so that I can manage her finances (for example, I have legal access to her bank account, and I balance her checking account each month and monitor her savings account).
I don't know whether guardianship improves treatment compliance and mental health outcomes, but I do know that it requires those who have power in the person's life (for example, their DSHS case manager) to include the guardian in, and keep the guardian apprised of, everything that transpires. A guardian can also make decisions such as where the person will live, who will provide medical care, etc.
I chose not to consider guardianship because, at least in my state for sure, and possibly in all states, if the person subject to guardianship is a registered voter, the county auditor will cancel that person's voter registration. In other words, if you have a guardian it signifies that you are so mentally impaired that you are incapable of voting. My sister is compliant with her meds (it is absolutely miraculous what meds can do) and voting is very important to her, and so that is the main reason I didn't even consider guardianship.
Google says (and this has been my experience in researching guardianship): "In general, the court may grant the guardian the power to make medical decisions, determine living arrangements, social settings, manage property, and handle financial affairs such as banking, investments, and expenses, including household and long-term care costs and taxes."
My sister lives in an adult group home where they administer her medication for her. The gate is locked so that those who need to remain on the premises for their own safety cannot leave independently. Fortunately, my sister's medication is effective enough that she is allowed quite a bit of independence. She goes for walks independently, and takes the local shuttle for the disabled independently, etc.
Hope this helps!
posted by SageTrail at 6:14 PM on September 30 [4 favorites]
I think this is going to be very dependent on your jurisdiction and how much money you have. Here's information about how it works in England and Wales. I'm not sure that meds compliance would be possible under it unless you had some kind of supported/restricted living arrangement in place.
posted by plonkee at 5:10 AM on October 1
posted by plonkee at 5:10 AM on October 1
In my state, at least, it would not in any way allow you to force involuntary medications. You could be the one to consent to prescriptions, so it might give you coercive control in that you and the doctor could agree to an injectable and then if your daughter didn't physically fight too much, a nurse might be willing to inject it even if it's technically illegal, but that sucks for everyone involved.
Most studies show that involuntary treatment has significantly worse outcomes for mental healthcare. There's a societal assumption that taking away people's rights will somehow force them into obedience and conformity. It doesn't work in pretty much any context, including mental health care. People are just so used to carceral logic that they don't realize that's what this is.
posted by lapis at 8:13 AM on October 1 [3 favorites]
Most studies show that involuntary treatment has significantly worse outcomes for mental healthcare. There's a societal assumption that taking away people's rights will somehow force them into obedience and conformity. It doesn't work in pretty much any context, including mental health care. People are just so used to carceral logic that they don't realize that's what this is.
posted by lapis at 8:13 AM on October 1 [3 favorites]
Side note but has she been assessed by a neurologist?
posted by cotton dress sock at 8:51 AM on October 1 [1 favorite]
posted by cotton dress sock at 8:51 AM on October 1 [1 favorite]
Response by poster: Thanks for the helpful responses, folks. I appreciate it.
posted by Well I never at 8:53 AM on October 1
posted by Well I never at 8:53 AM on October 1
On the inpatient side a documented guardian helps facilitate information to you overall. Legally you have to be informed of admission and discharge and consent to the discharge plan and your daughter can't just tell the providers to never talk to you again.
Which while it may not impact overall outcomes at least you will be aware of what is happening when medical care is being accessed. Without guardianship this may not be the case.
posted by AlexiaSky at 11:25 AM on October 1
Which while it may not impact overall outcomes at least you will be aware of what is happening when medical care is being accessed. Without guardianship this may not be the case.
posted by AlexiaSky at 11:25 AM on October 1
Power of attoneys can be revoked by the person so having one does not give the same rights as having a guardian.
posted by AlexiaSky at 12:03 PM on October 1
posted by AlexiaSky at 12:03 PM on October 1
My partner's son is a little older than your daughter who has had a trajectory that is similar although he was diagnosed a bit later. He does live with my partner. My partner is working with a lawyer to go for guardianship. One of the reasons he didn't do this earlier was his concern about his son not trusting him in the future (he is also paranoid, similar to your daughter) and that has not turned out to be the case so much but we also caught a lucky break in terms of the son being on his meds for a bit while hospitalized, so we're hopeful....
I presume, if you are in the US, you are connected with a NAMI family support group? They have been very helpful for my partner in understanding what is and is not possible within his own state and also just for talking to people who have been there. I can not recommend them enough if you are somewhere they serve. I'm also presuming because of your phrasing that it's possible her dad and you do not live together? In that case the person who she lives with primarily probably needs to do look at guardianship first. I do not know the specifics there (my partner's son's mom is pretty out of the picture) but I'm sure it matters in the grand scheme of things if that's true.
I agree with what others have said, guardianship will not made her meds compliant and it's worth talking to an attorney to get reasonable ideas of outcomes in your state. There are some cases, and I do not know specifics, where if your daughter could possibly be medicated with some of the longer-acting (like one shot good for a month sorts of things) anti-psychotics, that is a thing made easier with guardianship, though it's certainly still a tough path.
In the state my partner is in, guardianship would allow him to legally communicate with his son's health car practitioners in ways he currently can't. So if his son wound up in the ER and said "Don't talk to my dad" with guardianship, he could get someone to talk with him. Without it, his son would need to "agree to a two-way" and he rarely does. Often mental health care practitioners, as you have probably experienced, often find a way to share some information but are very hesitant (for good reasons) and guardianship can make that simpler. Also, our impression is that it can make certain other things go more smoothly such as interacting with government agencies (my partner's son received food stamps, and SSDI) on his behalf.
It is also our impression, though not really based on anything except "vibes" that being the legal guardian might make mental health facilities be a little more not just interactive but responsive when his son is hospitalized. I wish you luck navigating this path and I'd be happy to pass along my partner's contact info if you'd like to email them.
posted by jessamyn at 3:44 PM on October 1 [1 favorite]
I presume, if you are in the US, you are connected with a NAMI family support group? They have been very helpful for my partner in understanding what is and is not possible within his own state and also just for talking to people who have been there. I can not recommend them enough if you are somewhere they serve. I'm also presuming because of your phrasing that it's possible her dad and you do not live together? In that case the person who she lives with primarily probably needs to do look at guardianship first. I do not know the specifics there (my partner's son's mom is pretty out of the picture) but I'm sure it matters in the grand scheme of things if that's true.
I agree with what others have said, guardianship will not made her meds compliant and it's worth talking to an attorney to get reasonable ideas of outcomes in your state. There are some cases, and I do not know specifics, where if your daughter could possibly be medicated with some of the longer-acting (like one shot good for a month sorts of things) anti-psychotics, that is a thing made easier with guardianship, though it's certainly still a tough path.
In the state my partner is in, guardianship would allow him to legally communicate with his son's health car practitioners in ways he currently can't. So if his son wound up in the ER and said "Don't talk to my dad" with guardianship, he could get someone to talk with him. Without it, his son would need to "agree to a two-way" and he rarely does. Often mental health care practitioners, as you have probably experienced, often find a way to share some information but are very hesitant (for good reasons) and guardianship can make that simpler. Also, our impression is that it can make certain other things go more smoothly such as interacting with government agencies (my partner's son received food stamps, and SSDI) on his behalf.
It is also our impression, though not really based on anything except "vibes" that being the legal guardian might make mental health facilities be a little more not just interactive but responsive when his son is hospitalized. I wish you luck navigating this path and I'd be happy to pass along my partner's contact info if you'd like to email them.
posted by jessamyn at 3:44 PM on October 1 [1 favorite]
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Our neighbors had a similar situation, and were advised that in our state, it was nearly impossible to get a guardianship put in place if the person was capable of showing up to tell the judge they didn’t want it.
Find out whether it’s even worth pursuing, or if you need to take a different approach.
posted by Blue Jello Elf at 5:38 PM on September 30 [1 favorite]