Future plans for your loved one

For those of you who have MI loved ones who are your children, and for those of you who have been at this for some time, what plans do you have in place for your loved one after you are gone? This is a very sad subject that I’m sure no one wants to talk about, but I’m just interested in hearing about some of your plans should you no longer be able to care for your MI child.

Group home? Living independently? A sibling or someone close to your child’s age that can possibly be able to take over once you are gone?

My son would NOT be able to manage his own finances, so this is a huge worry for me. And of course, everything else that goes with it. Who will love him and care for him the way I do? Who will make sure he gets to his appointments, make sure he’s got enough food to eat, offer to take him out socially, etc? So many concerns mixed with so much sadness…

I’m hearing this illness eventually will level out by the time they are in their 40’s, and I’m hoping it’s true that the episodes and psychosis will gradually diminish, but even still…

Yet I see so many homeless people well into their 40’s and 50’s (and I’m not saying these people have sz), and it feels like if we are not here anymore to care for them in so many facets of their lives, they will just slip thru the cracks, and homelessness could be a real possibility…

Just trying to get some ideas or suggestions on this topic…



So a trustee will have to be appointed for the special needs trust, and will the sibling then be responsible for incrementing out additional funds monthly for expenses or as needed?


Does she currently live with you or on her own? Will she be living with sibling or will she live alone?

My son lives alone but I’m here, I worry about after I’m gone.

It sounds like she is doing extremely well and will be ok on her own. It must give you alittle sense of peace.

Yes. My older son would take over. He is 3 years older but has not quite matured in a lot of ways. I worry about that also.

My older has also said exactly the same thing. He will gladly help out but NEVER EVER under the same roof.

If going the banking institute route, how would that work? They would automatically give him a set amount monthly? Would I designate a certain amount? Or would my son have to ask them for a specified amount? I can’t imagine they would hand the money directly to my son.

Very true regarding Medicaid. The poorer you are, the greater the health benefits.

I was asking about the banking institution acting as a trustee? Do they just hand out the money to my son? I can’t imagine they would do that. Would my son have to go to them if he needed money or is it set up automatically?

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Yes you are. My son does get SSI and I was hoping the special needs trust wouldn’t interfere with that, and it sounds like it wouldn’t.

The problem is he doesn’t get quite enough even just for rent. He is short on rent, and of course he would need additional income to cover the balance of the rent as well as food, utilities, clothing, things that humans need.

Thank you again, I will have to sit down with an estate planning attorney soon and set everything up. One never knows what can happen from day to day.

I know my older son THINKS he will be in charge of everything, but not so fast, not until i have all of the info.


I think about this all the time. My son has leveled out quite a bit. He will be 35 next week. I almost think he could manage minimally so long as his bills were low.

His quality of life would drop drastically though because he would probably never socialize and then he is very likely to seek out pot again after more than 8 years without while living with me. He has very little self confidence in spite of me trying to build him up daily. That and the fact that he doesn’t self advocate bothers me a lot.

I think I need to speak to an attorney or insurance agent or someone and see what i can do about the money aspect and my current feeling is he will have to have a guardian take over after me. If he can convince that guardian he is able to make it then that’s out of my hands. In the meantime I will keep working with him on every day things and responsibilities.

I am working on an information notebook. He has mentioned this (in case anything happened to me) all the bill information, benefit info, practical info, appointment timelines, phone numbers etc etc…he does well with things written down clearly so I want to have that for what it’s worth.


thanks, I appreciate the input

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I’m also working on a “special notebook” with important info to share with my sons. My concern is that my older son’s maturity level is not where it should be right now. I’m putting a lot on him, I know, but Im hoping one day before I pass, he will be able to handle.

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If I have a term life insurance policy, let’s say for 1 million dollars as an example, would I mention BOTH of my sons as beneficiaries? Or just leave my older son as the sole beneficiary and designate that he is to split the 1 million with his brother? This is confusing. I wouldn’t feel comfortable leaving half million in lump sum to my son with sz. Just not sure, should I die, how that 1 million would get divided out.

Step one: create special needs trust for son with sz. Step two: make sure the beneficiaries of the insurance are your older son and your son with sz’s trust. In any and all estate matters, only the trust can be beneficiary for your son with sz. Then your older son does not have to do it, unless he wants to. You can even name older son as trustee or co-trustee if you want to.



Aaahhh, ok I think I understand now. The trust is the beneficiary, never my son with sz. And if he needs money from the trust, I guess I can appoint either my older son or possibly even an attorney who can increment it out as needed. Thank you for the info

Yes, there are all kinds of professionals out there who can be trustees and charge less than lawyers. Certain banks have trust departments.

Also, if you set this up for your son with sz, a lawyer can structure a special needs trust so that your son can still receive SSI, Medicaid, and other things like SNAP benefits. There was a presentation about these trusts at our NAMI group. It’s good to plan ahead when and if possible.


Thank you again. My son does receive all 3 benefits that you mentioned. When I called the social security office, she said that if my son inherits a nice amount of money, it would negate all of his benefits, which was very upsetting to hear. This was BEFORE I found out about the special needs trust.

I’m so glad there is such thing, and there certainly should be. There is no way my son or anyone could live on what he gets from SSI, it’s a ridiculously small amount.

I try not to think about how he may end up after I’m gone. All I can do is do what I can now and put things into place, and hopefully the wheels will turn in the right direction.

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There are different types of Special Needs Trusts, and specific guidelines on what items can be paid for out of the Trust without risking having any government benefits disrupted. Hiring an attorney who specializes in SNTs (either a separate Trust or one which is a part of your own Trust) can be really helpful, to be sure there isn’t a problem down the road.

Also, in California, there are Professional Fiduciaries who are licensed by the state who can be named as Trustee. We have a SNT embedded in our family Trust which names a Professional Fiduciary as Trustee after both my husband and I are gone, both because we don’t want to burden our schizophrenic daughter’s siblings or cause any friction between them, and because the fiduciary company has extensive experience in handling those type of Trusts, which will hopefully avoid any costly mistakes. To us, the money spent on the fiduciary will be worth it.


I had a lawyer who specializes in wills ect. set up a trust for my son. It did not cost too much and well worth it. Also I have a file that I have all information about my son and I update it every six months. All his benefits, meds, doctors, experiences, banking, bills and whatever. We all know all the many things we do and take care of so I have all that information in a file that is with my will and the trust fund so anyone else can easily pick up where I left off. hope this helps.


Thank you for this information, DoubleN,

I am hoping that once my husband has stopped his delusional wandering around the country that he will return to CA (which I am pretty sure he will, eventually). Then I can look into finding a Professional Fiduciary for him. It might be tough for me, because I don’t live in CA any longer, but at least I am aware of this option now.

I have never been able to hold money for him because he bullied me into letting him have it. I didn’t know how to find information about options for Trusts and Trustees when we were living together in CA. I knew I would never be able to be a Trustee for him but he does need someone to manage his money for him.

Does having a Professional Fiduciary as Trustee cost a lot per month or year? That would be my only concern.

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Thank you, very helpful. I’ve been thinking and talking about this for awhile now, I need to now act on it.

The cost depends on which fiduciary you choose. Some charge a percentage of the assets being managed, and others, like the one that will be handling our daughter’s funds after we die, charge an hourly rate. Maybe a fiduciary would be cost-prohibitive for you. Trying to afford the necessary things is one of the huge challenges for almost everyone I know that has someone close who suffers from a severe mental illness, and this is no exception. SSI and others benefits don’t even come close to providing enough, and most of us are struggling to supplement from our own modest funds. I ended up taking out a life insurance policy to hopefully assure there will be enough money to keep paying the fiduciary, and affording those premiums is a challenge, too.

But I am still grateful California has these fiduciaries. When we lived in Illinois, all that existed there was an individual family member or the Trust department of some bank, and most of them would not accept smaller trusts like ours will be. It’s one of the things that kept me up at night.

I wish you well as you work through your plans!


Thank you for this post and to all who replied. My husband and I have been talking about the need to set something up for our daughter. We have very little money so I’m not sure how helpful we can be.