Who runs her life when we're dead?
December 16, 2023 2:04 PM Subscribe
Our autistic daughter is almost 20. She can take care of herself but has no concept of money. Who looks out for her when we're dead?
Daughter lives with us. She can dress herself, bathe, cook herself basic food. She gets herself off to school in the morning. She is no trouble at all. But she has no concept of money. She has online tutors but no friends, and she doesn't know how to make friends.
We're both 60. We hope not to be dead soon, but oh, in the next twenty years it's not at all unlikely. We live in Montreal, but her cousins live in New York. We don't have a close relationship with anyone under 50.
Theoretically the answer would be a group home. But we live in Montreal, and she doesn't speak French, in spite of 18 or so years of schooling. Montreal is really short on group homes for anglophones. There are decade-long wait lists. I'm part of an organization trying to create one, but it's tough sledding.
Are there any outside the box ideas we're missing? She'll have money, which a professional could probably handle. But she doesn't have friends right now, or anyone to talk to, and I don't know who she could trust to handle her affairs, since she has no reality check at all.
Daughter lives with us. She can dress herself, bathe, cook herself basic food. She gets herself off to school in the morning. She is no trouble at all. But she has no concept of money. She has online tutors but no friends, and she doesn't know how to make friends.
We're both 60. We hope not to be dead soon, but oh, in the next twenty years it's not at all unlikely. We live in Montreal, but her cousins live in New York. We don't have a close relationship with anyone under 50.
Theoretically the answer would be a group home. But we live in Montreal, and she doesn't speak French, in spite of 18 or so years of schooling. Montreal is really short on group homes for anglophones. There are decade-long wait lists. I'm part of an organization trying to create one, but it's tough sledding.
Are there any outside the box ideas we're missing? She'll have money, which a professional could probably handle. But she doesn't have friends right now, or anyone to talk to, and I don't know who she could trust to handle her affairs, since she has no reality check at all.
Any chance you could move to a more anglophone city that has better resources for her? Ottawa? Or to a smaller city, probably in another province?
posted by mareli at 2:38 PM on December 16, 2023 [9 favorites]
posted by mareli at 2:38 PM on December 16, 2023 [9 favorites]
hmm .. in the US terms like fiduciary and trustee would be helpful in your search .. things like legal guardianship and conservatorship come to mind.. but I really don't know much about what it's all called in Canada. In the US the burden of proof to begin a legal guardianship is, rightfully so, quite high.. I'm sure in canada too, but it is done frequently. Hmm not a ton to go on but maybe it's some help, hope so!
posted by elgee at 3:04 PM on December 16, 2023 [6 favorites]
posted by elgee at 3:04 PM on December 16, 2023 [6 favorites]
you need to talk to an estate planning attorney about this. In my jurisdiction the law provides for special needs trusts that serve as part of the solution for situations like this, but you'll want bespoke advice for your situation and jurisdiction.
posted by fingersandtoes at 3:16 PM on December 16, 2023 [25 favorites]
posted by fingersandtoes at 3:16 PM on December 16, 2023 [25 favorites]
I second the recommendation to talk to an estate planning attorney. In some places in the US the solution to this would be a special needs trust + a paid professional to administer it, but you need advice specific to your daughter and your location. I bet an elder care attorney would also be able to provide helpful information and/or referrals, even though this isn’t really an elder care situation - but many of the needs are similar.
posted by maleficent at 3:51 PM on December 16, 2023 [3 favorites]
posted by maleficent at 3:51 PM on December 16, 2023 [3 favorites]
How good is the relations with the cousins? If they’re good people maybe it’s time to start the conversation with them now, and see what they’d be open to, especially since she’s not be a financial burden. One barrier would be American citizenship if she were to go live with them and that process can take decades pending your situation.
posted by St. Peepsburg at 3:57 PM on December 16, 2023
posted by St. Peepsburg at 3:57 PM on December 16, 2023
Best answer: Can you get in touch with the Autistic community and network there? One long term option is to find her five or so viable future roommates on the spectrum and set up your own group home for the lot of them to move into when they can no longer live with family.
What does she do in her free time? Whatever that is, there is probably a community somewhere on line that also does that. It would be worth trying to see if she can get a social life with people who share her interest, even if that interest is to watch Disney Cinderella again every single day after she gets home from school. Parallel play is the first direction to try to steer her into regarding a social life. Disney Cinderella watch parties could be a nucleus of that. I don't know what she does, but I'd expect that there are other people out there who are doing it too, and while they definitely wouldn't be suitable to become her allo-parents after you are gone, they could be a peer group to keep her from developing agoraphobia, and to model behaviour that she can see herself emulating.
Keep in mind that people on the spectrum often have strongly conflicting needs, so the assumption that she won't hit it off with random people on the spectrum is reasonable. All the same there will be people on the spectrum rather like her out there, and even some who are just different enough from her that they would make good companions because their autistic traits complement hers.
Another thing you can do is look into people who have autistic children and see if they would be interested in starting a long term relationship with her. A pair of thirty-something year old parents with an autistic daughter might have been told that she will never live independently and be wondering how they can manage to support their own daughter who will require 24 hour care. Your daughter twenty five years from now, living in their home could use any trust fund money to provide the more direct care their daughter needs in return for not having to pay rent or bills or buy groceries, and the whole thing be overseen by a trustee after you are gone.
If there is not substantial trust fund money then your options are all going to be difficult. Someone will have to be the guardian and if you don't find one and appoint one she will end up under the public curator. The government usually wants that job so little they will try to get anyone in proximity to accept it, so will accept fairly random people like landlord or neighbour. This means that there is every possibility someone you don't currently know will end up in that position, simply because they are there at the point when it becomes visible that she needs to have one and you guys have been unable to do it for awhile. This person may or may not be a good person to get the job.
I suspect if you have already been looking into the creation of more group homes, that you are already familiar with all these ideas and have heard what other parents who are aging out of being caretakers are doing or have done.
In the past three options would have been to place her as a domestic servant, under the care of her employer, to find someone to marry her, or to place her in a religious community. These options probably make you glad you don't live back then, and it is definitely true that those situations would put her under someone else's power where there was danger of exploitation or abuse. However she's going to be at risk whatever you do, once you are not there to protect her, so it might be worth considering if some modern variation of these things would open a few more options for her. The idea of finding someone to marry her is appalling, but the idea of her moving in with her boyfriend's family and his parents looking after both of them when you are gone may not be as horrifying.
Similarly if she has the ability to earn some income that means that she will have much more leverage when it comes to where she lives and extricating herself from any bad situation. But again, since she is attending school, I assume you have considered that giving her the ability to earn an income is worth putting effort and money into. If she can dress herself, bathe, cook meals and get herself off to school on time, she does have skills that mean she can contribute. Even living with neurotypical roommates she could be a valuable member of the household if her skills extend to being the person who cooks, cleans and walks the dog while everyone else is at work. Of course you can't set her up in such a household now, or get a household like that to hold a place for her. But you can work on preparing her for that role, and you can work on having and maintaining a social network where you might be able to find something like that for her when the time comes.
The problem is no certainties. Since you are responsible for her, and you love her you want to know what will become of her. If you can't simply set up a guardian, a roster of care takers and a trust fund to pay for it all, you are stuck with the uncertainty. Uncertainty leads to nightmares, and yet, even if you DID set up an arrangement like I just described you can't really control the vagaries of fate that could make the arrangement fall apart. At this point all you can do is hang on as long as you can, and help her to increase her abilities as much as you can. She may not be able to learn the value of money, but if she can learn the importance of not letting people convince her to give it to them, or to spend it, she will have a critical basic skill. If she can make phone calls to ask for help, if she can have a friendly conversation with someone - those are things that will protect even more than setting up a trust fund. As much community as you can give her and as much self reliance as you can give her will go a long way to ensuring her future.
posted by Jane the Brown at 4:11 PM on December 16, 2023 [8 favorites]
What does she do in her free time? Whatever that is, there is probably a community somewhere on line that also does that. It would be worth trying to see if she can get a social life with people who share her interest, even if that interest is to watch Disney Cinderella again every single day after she gets home from school. Parallel play is the first direction to try to steer her into regarding a social life. Disney Cinderella watch parties could be a nucleus of that. I don't know what she does, but I'd expect that there are other people out there who are doing it too, and while they definitely wouldn't be suitable to become her allo-parents after you are gone, they could be a peer group to keep her from developing agoraphobia, and to model behaviour that she can see herself emulating.
Keep in mind that people on the spectrum often have strongly conflicting needs, so the assumption that she won't hit it off with random people on the spectrum is reasonable. All the same there will be people on the spectrum rather like her out there, and even some who are just different enough from her that they would make good companions because their autistic traits complement hers.
Another thing you can do is look into people who have autistic children and see if they would be interested in starting a long term relationship with her. A pair of thirty-something year old parents with an autistic daughter might have been told that she will never live independently and be wondering how they can manage to support their own daughter who will require 24 hour care. Your daughter twenty five years from now, living in their home could use any trust fund money to provide the more direct care their daughter needs in return for not having to pay rent or bills or buy groceries, and the whole thing be overseen by a trustee after you are gone.
If there is not substantial trust fund money then your options are all going to be difficult. Someone will have to be the guardian and if you don't find one and appoint one she will end up under the public curator. The government usually wants that job so little they will try to get anyone in proximity to accept it, so will accept fairly random people like landlord or neighbour. This means that there is every possibility someone you don't currently know will end up in that position, simply because they are there at the point when it becomes visible that she needs to have one and you guys have been unable to do it for awhile. This person may or may not be a good person to get the job.
I suspect if you have already been looking into the creation of more group homes, that you are already familiar with all these ideas and have heard what other parents who are aging out of being caretakers are doing or have done.
In the past three options would have been to place her as a domestic servant, under the care of her employer, to find someone to marry her, or to place her in a religious community. These options probably make you glad you don't live back then, and it is definitely true that those situations would put her under someone else's power where there was danger of exploitation or abuse. However she's going to be at risk whatever you do, once you are not there to protect her, so it might be worth considering if some modern variation of these things would open a few more options for her. The idea of finding someone to marry her is appalling, but the idea of her moving in with her boyfriend's family and his parents looking after both of them when you are gone may not be as horrifying.
Similarly if she has the ability to earn some income that means that she will have much more leverage when it comes to where she lives and extricating herself from any bad situation. But again, since she is attending school, I assume you have considered that giving her the ability to earn an income is worth putting effort and money into. If she can dress herself, bathe, cook meals and get herself off to school on time, she does have skills that mean she can contribute. Even living with neurotypical roommates she could be a valuable member of the household if her skills extend to being the person who cooks, cleans and walks the dog while everyone else is at work. Of course you can't set her up in such a household now, or get a household like that to hold a place for her. But you can work on preparing her for that role, and you can work on having and maintaining a social network where you might be able to find something like that for her when the time comes.
The problem is no certainties. Since you are responsible for her, and you love her you want to know what will become of her. If you can't simply set up a guardian, a roster of care takers and a trust fund to pay for it all, you are stuck with the uncertainty. Uncertainty leads to nightmares, and yet, even if you DID set up an arrangement like I just described you can't really control the vagaries of fate that could make the arrangement fall apart. At this point all you can do is hang on as long as you can, and help her to increase her abilities as much as you can. She may not be able to learn the value of money, but if she can learn the importance of not letting people convince her to give it to them, or to spend it, she will have a critical basic skill. If she can make phone calls to ask for help, if she can have a friendly conversation with someone - those are things that will protect even more than setting up a trust fund. As much community as you can give her and as much self reliance as you can give her will go a long way to ensuring her future.
posted by Jane the Brown at 4:11 PM on December 16, 2023 [8 favorites]
Is there a drawback to getting on the list for the anglophone group home now? In ten years you can decide what to do about it. It’s probably easier on everybody if she gets settled in a new place before you are struggling to care for her and it’s framed as a fun exciting thing rather than associated with something sad. Then you need someone to assume guardianship: a pro, the government, or the cousins. The good thing is it sounds like you have a lot of time to figure this out.
posted by momus_window at 4:15 PM on December 16, 2023 [20 favorites]
posted by momus_window at 4:15 PM on December 16, 2023 [20 favorites]
Also, teaching her about money should include teaching her about financial abuse and what to do if it happens. Things like calling adult protective services if something big changes (no longer get new clothes, messages from bank, etc).
posted by momus_window at 4:18 PM on December 16, 2023 [4 favorites]
posted by momus_window at 4:18 PM on December 16, 2023 [4 favorites]
Best answer: I once had a temp job as an accounting assistant at a nonprofit that managed personal finances for intellectually disabled or mentally ill adults who were unable to manage their own money. They had caseworkers that would meet with the client once a month to go over their budget, pay out the essentials on their behalf (e.g. room and board at the group home, phone bill, bus pass, etc.), and then work with the clients to figure out how they wanted to spend whatever was left over (e.g. would the client prefer to add HBO to their cable TV or have more spending money for treats). I don't know what it's called in Canada but in the US I believe the term is "Social Security Representative Payee."
I was in the back office so never interacted with the clients directly but my impression from the emails and transactions I processed and the reports that I produced was that they tried to give the clients as much financial autonomy as was feasible after making sure their basic needs were paid for first. Also, a lot of families with living parents still chose to use this service because that meant they could have more of a normal parent/child relationship without it being colored by financial disagreements.
So I would look for a service like that. They tend to be very localized because of the face-to-face interactions, so I'd start by maybe calling 211 to see if they have any services like that in their database, and also reach out to any local support groups for parents to see what other parents have set up.
In my own family, one of my adopted sisters from Russia has numerous intellectual problems likely caused from fetal alcohol syndrome, and her son has severe nonverbal autism. She was milking my now-senile dad for money to the point of it becoming elder abuse, so the family set up a system where there's a trust fund and any requests for funds for herself or her son first go through another sister who is a psychologist with social work experience, and if that sister approves then she (the psychologist sister) brings the request to my brother who has financial power of attorney for my father and will authorize the CPA running the trust fund to disburse the funds if it's for a reasonable amount that dad can afford. For example, there was an ongoing issue with the fetal alcohol sister blowing her social security disability payments on stupid shit and she ended up living in her car for a while, so the family decided to rent her an apartment and pay the landlord directly so that she would always have a safe place to sleep instead of needing to prostitute herself for housing, but left her in charge of her other bills so she would learn some responsibility by finding out what happens when you don't pay the phone bill.
But I have seven siblings (mix of biological, step, and adopted) and both sets of parents are multimillionaires, whereas most other families don't have that many siblings with such diverse skillsets or that much money to throw at the problem, so unless you have a large family and a lot of money then that likely won't work for you. However, if you can't find a payee service like the one I temped at, the general model of setting up a trust fund that pays essential housing-related bills (rent, utilities, renter insurance) so that she always has a safe place to sleep but allows her some autonomy in deciding how to spend her food budget etc. might work.
IMO it would be best to set her up with a long-term living situation well before you die so that she is not dealing with two big shocks at once. I was pretty involved in the decision to rent the apartment for my sister and I'll give the same advice I gave my parents: find her a reasonably priced apartment ON A BUS LINE (my sister was in danger of losing her license at the time) that's in a relatively safe neighborhood, and then set up automatic rent payments that happen every month regardless of whether she remembers or asks you.
If she is incapable of learning French, you might also want to seriously consider moving the entire family to an English-speaking province when you retire. I know the Canadian housing market is terrible and that likely makes things difficult, but think of it as a 10+ year plan: 1) Move to English-speaking province, 2) Once daughter has adjusted to that move, rent her an apartment or move her into a nearby group home, 3) Set up trust fund and/or payee service to pay her essential bills so that she always has housing even if she mismanaged the rest of her budget and implement this BEFORE you die so that she's used to going through them not you for her financial matters.
posted by Jacqueline at 4:39 PM on December 16, 2023 [10 favorites]
I was in the back office so never interacted with the clients directly but my impression from the emails and transactions I processed and the reports that I produced was that they tried to give the clients as much financial autonomy as was feasible after making sure their basic needs were paid for first. Also, a lot of families with living parents still chose to use this service because that meant they could have more of a normal parent/child relationship without it being colored by financial disagreements.
So I would look for a service like that. They tend to be very localized because of the face-to-face interactions, so I'd start by maybe calling 211 to see if they have any services like that in their database, and also reach out to any local support groups for parents to see what other parents have set up.
In my own family, one of my adopted sisters from Russia has numerous intellectual problems likely caused from fetal alcohol syndrome, and her son has severe nonverbal autism. She was milking my now-senile dad for money to the point of it becoming elder abuse, so the family set up a system where there's a trust fund and any requests for funds for herself or her son first go through another sister who is a psychologist with social work experience, and if that sister approves then she (the psychologist sister) brings the request to my brother who has financial power of attorney for my father and will authorize the CPA running the trust fund to disburse the funds if it's for a reasonable amount that dad can afford. For example, there was an ongoing issue with the fetal alcohol sister blowing her social security disability payments on stupid shit and she ended up living in her car for a while, so the family decided to rent her an apartment and pay the landlord directly so that she would always have a safe place to sleep instead of needing to prostitute herself for housing, but left her in charge of her other bills so she would learn some responsibility by finding out what happens when you don't pay the phone bill.
But I have seven siblings (mix of biological, step, and adopted) and both sets of parents are multimillionaires, whereas most other families don't have that many siblings with such diverse skillsets or that much money to throw at the problem, so unless you have a large family and a lot of money then that likely won't work for you. However, if you can't find a payee service like the one I temped at, the general model of setting up a trust fund that pays essential housing-related bills (rent, utilities, renter insurance) so that she always has a safe place to sleep but allows her some autonomy in deciding how to spend her food budget etc. might work.
IMO it would be best to set her up with a long-term living situation well before you die so that she is not dealing with two big shocks at once. I was pretty involved in the decision to rent the apartment for my sister and I'll give the same advice I gave my parents: find her a reasonably priced apartment ON A BUS LINE (my sister was in danger of losing her license at the time) that's in a relatively safe neighborhood, and then set up automatic rent payments that happen every month regardless of whether she remembers or asks you.
If she is incapable of learning French, you might also want to seriously consider moving the entire family to an English-speaking province when you retire. I know the Canadian housing market is terrible and that likely makes things difficult, but think of it as a 10+ year plan: 1) Move to English-speaking province, 2) Once daughter has adjusted to that move, rent her an apartment or move her into a nearby group home, 3) Set up trust fund and/or payee service to pay her essential bills so that she always has housing even if she mismanaged the rest of her budget and implement this BEFORE you die so that she's used to going through them not you for her financial matters.
posted by Jacqueline at 4:39 PM on December 16, 2023 [10 favorites]
Oh and you might want to seriously consider talking with her about getting a copper IUD now even if she's never dated or has no interest in dating. Copper IUDs are officially rated for 10 years, but in practice they generally keep working until you remove them (unlike hormonal IUDs that stop working once the hormones run out).
Scummy men love to take advantage of intellectually disabled women, especially ones who don't have friends to look out for them.
My fetal alcohol adopted sister's life would have been a zillion times easier without all the unplanned pregnancies, abortions, and the severely disabled son she got from the time she didn't realize she was pregnant until it was too late for an abortion.
posted by Jacqueline at 5:24 PM on December 16, 2023 [16 favorites]
Scummy men love to take advantage of intellectually disabled women, especially ones who don't have friends to look out for them.
My fetal alcohol adopted sister's life would have been a zillion times easier without all the unplanned pregnancies, abortions, and the severely disabled son she got from the time she didn't realize she was pregnant until it was too late for an abortion.
posted by Jacqueline at 5:24 PM on December 16, 2023 [16 favorites]
I have dear friends who are in a similar position as you in the same city. Their son is also anglophone but is able to live independently. It could be possible that you can find a care broker who can support your daughter to shared independent living now rather than wait until the future, and avoid group homes if you can. I recommend getting a financial planner involved to plan the succession of your estate and help access tangible training for your daughter to learn how to shop, keep a budget, and pay bills.
posted by parmanparman at 11:34 PM on December 16, 2023
posted by parmanparman at 11:34 PM on December 16, 2023
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Community and meaning - She likes dog walking, doesn't she? Could you help her find work walking dogs? This can give her a wide range of acquaintances and something in common with them, plus an in-demand skill to fall back on.
posted by aniola at 2:30 PM on December 16, 2023