How to plan for son's care after parents die in

We are getting older. How do we plan for our son’s care after we die?

He is diagnosed with schizoaffective disorder. He is 35 and unable to work and lives at home. We have consulted a lawyer about a trust, but we have no one in our lives willing or able to be trustee except for an attorney. His trust would only consist of about $100000, which i know we are lucky to have but it is not enough to pay for residential facility for long. And attorney fees would eat that up too. I guess i fear he would end up homeless or dead. I wish i could have a little peace of mind, but i guess that is simply not possible. I thought that others might be grappling with this too. I hoped someone out there has some ideas or experience with this.


Is your son diagnosed?

Welcome! People can offer more suggestions if you could provide some general information about your financial situation.

For my brother, my parents consulted an attorney. He helped set up a special-needs trust which owns his home, and advised he get enough employment credits to qualify for social security retirement benefits, as he refused to go on any disability programs. Provisions in their wills leave money to his trust which is administered by my sister with input from the other siblings.

The “soft care” or “boots on the ground” issues are our biggest gaps with him, so I moved nearer to where he lives to facilitate with those.

Maybe you can get advise with an organization with focus on people with disabilities. Is he on SSI? Maybe trying to start a housing transition now better than latter.

I could have written this myself. I am in the same situation. I have been so concerned for years about a very similar issue. I am an ‘elderly’ mom and am the only one here to support emotionally and in every other way my mid 40’s son who has serious mental health issues and is only partially ‘controlled’ on antipsychotic meds making life extremely challenging for me. If he was not living with me he would be (and has been in the past) on the streets and a flight risk and a risk to self and others. I provide him with the only stability he will accept … and it is so draining on my psyche. I too have a trust set up with an attorney to manage whatever assets I have left on my death but I am really adverse to a big chunk of them being eaten up in administrative and other costs and not going to improve my son’s quality of life. Other than myself there is no one to look out for my son on my demise and this unnerves me so.

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Hi, I wish I had something to add but I am in the process of trying to figure this out too, while I can. My son is 38 and also has always lived with me and cannot work. I am trying as best I can to show him basic things, he would have to know to continue on without me if needed. He keeps a lot of notes, but he has become very forgetful and has recently had a new type of seizure that can’t be explained yet. So far, just one. I am truly at a loss. He has an older brother who lives 2000 miles away and although he cares in his own way, he has made it very clear he will not step in for me and wants me to come up with a different plan. I would never want anyone to step in for me that didn’t want the responsibility. I am his legal guardian and while I seldom need it anymore because he is very compliant with everything. I have considered a court appointed guardian. I just don’t know. So much to think about. I will let you know if I think of anything and hopefully you can do the same. I wish you well.


I can so relate to this. I spend so many hours worrying about what will happen when I’ve passed away I have put everything in a trust with a lawyer because I don’t have anyone it’s just me. My son’s on medication but there’s always the worry that he will stop taking his meds. He has in the passed. My other son is also mentally ill he doesn’t talk much to me. He has no friends and doesn’t go out of the house. My husband passed away a year ago from covid. I just feel so alone dealing with all this. I just hope this lawyer won’t take a big chunk of money for his fees that nothing will be left over for my kids to survive. I don’t have a great deal of money. Thank you all for listening it’s just one of those days when you can’t stop crying.


Please keep this conversation going.
Someone must have some ideas or an effective plan to protect their loved one after parents die. If you do please share.
So much is needed for our loved ones, safe permanent housing, daily support with their medicines, friends, support with finances…the list goes on. How can this continue for our loved ones when we are no longer here to help and love them.
My heart goes out to all in this situation. It is a heavy burden to carry. I am worn out from the worry of the future and so desperate for a solution to have my loved one solid before I leave this world.

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Of course our constant worry is who will take care of our adult children when we are no longer alive, how could it not be?

In this regard, there is such a mix of futures hanging over all of us. Research has taught us that most of our family members will improve in their ability to take care of themselves. “Somewhat better” is much better than no improvement possible. My son is 40 now, a few years ago we began noticing improvements that have stayed with him. One example is that he began ordering his own meds for a non-related medical condition. When this began happening consistently, we do believe it was proof that his symptoms have lessened. While it seems like a little thing, its a MAJOR thing as he needs these meds to sustain his life. Ordering and picking up his meds was not the only change, there have been so many little - but important- abilities that were gained over the last few years.

I read an article once that talked about how often our family members are jettisoned from our homes to the streets after we pass away. When possible, if they live with us, we need to make sure our “final home” is small, paid off, and in their name long before we are near death.

We were surprised how expensive it was to set up a special needs trust in our will. We had to pay $2500. for 3 wills and a special needs trust. You have to make sure the special needs trust is set up properly. We needed 3 wills as we have another son. We had to make sure Jeb’s ssi and ssdi would be protected from an inheritance from his brother if his brother died without a will.

The attorney did not like it - not one little bit- that we had our other son as trustee for Jeb. The attorney was really annoyed that we had two back up trustees in case our other son died before Jeb. (The attorney really wanted to be the trustee and suggested we were foolish to trust his brother and our friends with the responsibility.) Maybe so, but life is full of risks and these are three dependable people. If we didn’t have such people in our life, we probably would have named the attorney as a trustee.

We set up the back up trustees as co-trustees - any action taken would require both of them.
We split the inheritance 1/3 and 2/3 between our sons. We told our trustee son and the back up trustees, that our intention with the difference was to make funds available for them to buy housing for Jeb if needed in the future. Currently Jeb rents, renting works well for him. Yes, in case you are wondering, if our trustee son passed away before them and before us, the co-trustees inherit the trustee son’s inheritance. Seems only fair for what we are asking of them.

We have to do our best to set them up in a sustainable situation with some sort of support around them. The lead teacher for the Family to Family class we attended had her son do all daily errands with her. Banking, both online and in person, grocery shopping, utility bills - everything. She kept a notebook of the tasks and he checked off the tasks with her.

We aren’t able to see or prevent all of the pitfalls. But, we need to remember that they will improve somewhat and most will need “somewhat less support” as they age. There can be good possible outcomes, like those starfish in the old story. I’ve thought about that story a lot over the years. The thrower really doesn’t know how it will end for the starfish - but at least the starfish are given a chance. Things could work out just fine.


Hi Susanbee-
This is something I think about all the time. I suppose that any time we as parents realize that our adult children are entirely dependent on us it is a legitimate concern. I know that having a plan helps me to feel less stressed in general, although my plan isn’t fully executed yet and I am sure it will change some over time. I recommend this book:

Planning for the Future: Providing a Meaningful Life for a Child with a Disability After Your Death

by L. Mark Russell

I thought is was better than others I have seen. My 30 yo son (schizoaffective disorder diagnosis as well) is living at home with us. Our will directs his inheritance to a third party trust (special needs trust- SNT). We named his brother as trustee, but are now thinking that we will need to name a corporate trustee (basically a bank) and name the brother as trust protector so that he can change the trustee for any reason but won’t have to take on the responsibility himself. I learned that there are a couple of banks that still manage special needs trusts, but fewer and fewer do this- probably because it is not lucrative. There exist group trusts as well in which your money is bundled with others and managed by a corporate trustee who accepts responsibility for care management along with the investing. I watched some videos online by a law firm in California where I live. These were very informative and may help you no matter where you live in the U.S.
Once you have the inheritance in the SNT you aren’t really set, because your son won’t be able to access the money easily. He is not allowed any cash allowance but if you set up an ABLE bank account for him and put money into it each year, he will be able to draw from that account to pay for some of the things he needs. Disability payments (SSI) don’t go very far in California.
Once you have the SNT and the ABLE account, you must write a Letter of Intent that describes what you want the money to be used for and how an outsider could help your son. The book I mentioned above provides some good examples. I agree that the management of the funds may make the money disappear far too quickly. I think it will take research to find a good affordable option for your family.
I have these things set up but I am still very uneasy about the future. I know that no one will be able to do the things that I do for my son and I don’t know if there will be funds for good case workers/ care management professionals, but I know that they do exist and that ostensibly your SNT can pay for someone to help your son with essentials like medical care and bill paying. The housing part is really tough for our family. We own a home, but it will be sold and the proceeds divided between both our boys on our death. I would like to purchase a place for my son before that happens, but we live in one of the most expensive areas in the country and it wouldn’t make sense to find my son a home that is far from where we are now. I hope that the resources that helped me will help you. Like I said, I don’t have it all figured out and am still very uneasy about this. I think about it every day.

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I can so relate to all of you. This causes me so much stress. I live in Ontario Canada. I don’t have a great deal of money to leave behind. I have put my money into a trust and appointed a lawyer with my other son as trustee. I hope the lawyer doesn’t take a big chunk of the money. Does anyone here live in Ont. That can advise me. Thanks

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I think that @Catherine is right by demonstrating what needs to be done, like filing taxes, while she is alive.

@nowwhat, I own Planning for the Future: Providing a Meaningful Life for a Child with a Disability After Your Death and need to get back to reading it! It won’t do me any good sitting on a table unread.

Housing and finances seem to be the most important things. Housing needs to be low-maintenance – so that may not be the family home – and, depending on a LO’s ability to manage finances, detailed instructions might be left about inherited accounts.

I did read somewhere that inherited IRAs have to be drawn down in 10 years unless the inheritor is disabled, and then they can draw on the account over their lifetime. I don’t know exactly how this is done though.

This group may (or may not) be helpful: Planned Lifetime Assistance Network. They have offices in 27 states.