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.

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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.


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.


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.

I’m hoping this goes in as a reply to this topic. Our lawyer asked for a list of a dozen names…people who know Christina who has severe Bipolar,40, has MSSW but never worked… many assaults. She does luve alone but not far.
We’re in MA she lived in Louisville for 10 years …college. she’s had 24 + hospitalizations
Our attorney set up trust. Wanted names as she said in 10 yrs whenever you have no idea who will be willing to do it. We would NEVER use an attorney as here in Greenfield. City of 19,000… in the last 30 yrs at least 3 lawyers have gone to jail for robbing trusts
We’re in mid 70s. Chris’ cousin 8 yrs older, said she would do it . Actually thinking of talking to friend of Chris’ who was in school with her, very close. Chris drives, pays bills.
She us on SSI/ Medicare has SNAP and is Dept of Mental Health more or less case managed
MA is #1 in country for Mental Health services and they are not great
I was a SPED in the 70s and since Chris became ill 1999 at 17 have been very involved in NAMI and advocacy
We’re talking to a local bank too our feeling is less likely to be corrupt then a lawyer
ADVICE: If your adult child is not on disability get them on it.
Ger them involved with SNAP, EBT now, medicare/medicaid.
We told Christina when she was first ill that this was all about services and money. Also we could not help if she didn’t do these things.
She also had to always sign releases for us to talk to all involved.
Once this is done look into living situations.aybe a group home?
Personally I would like to see class action lawsuits for the lack of safe services for those with mental illness.
They’re doing it with the opiod epidemic
There is no accountability.
So services… in the system of your state
Join NAMI, DBSA…find support for you on this.
In MA the state is selling the land state hospitals were on to build multi million dollar homes. When I asked state legislators if the sale money went into mental health services… I get chuckles… no answers.
We tapk about human rights abuses with other countries…
We need to demand and other groups demand more


My heart goes out to all contributors and the painful stories. As if it weren’t enough to support our loved ones during our lives, we are all consumed with supporting them after we’re gone. This is true love. I’m blessed to be on this journey with so many amazing caregivers.

We’re mid-50’s, son with SZ diagnosis is in 20’s. Lives with us. On SSI but still on our insurance. Can’t stand the thought of my son on food stamps and Medicaid but at least it’s an option if needed.

Very thankful for those more experienced caregivers who’ve dealt with this situation for 10, 20, 30+ years, and take the time to engage this forum. I wouldn’t be as prepared without your shared experiences.

My faith sustains me. When all seems lost, I sincerely believe Christ will find a way. My prayer today is that you’ll feel His peace. He hurts with the hurting. He was especially protective of children - which is what we all have.

Certainly don’t want to offend ANYONE with different beliefs. Love and respect to all worldviews. Just sharing what gets me through another day at Caregiver Central.

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It’s Hard… We’re in our mid-70s and actually fairly comfortable. Christina has no siblings as her brother died a couple of years ago. When I mention getting agencies involved etc… this would at least help you have others who can provide services. You are smart to be thinking of this now. Times do change. Chris should be very comfortable when we’re gone but there does need to be a trustee and health care… she’s on medicare… once Bill retired she was eligible for that. I do know of programs where adults with mental illess or similar can live but they tend to run hundreds of thousands a year… affordable for some but not for most. Just keep doing what you’re doing. You’re on the right track. While we trust in God I’m not so sure that I trust in mankind… By being conscientious and learning we better our chances of being able to help our children.


Thank you for sharing❤️

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Thank you @Lovemom - this thread has been a wonderful brainstorm.

I realize that sz has many forms and degrees. My son diagnosed in his early 20’s right after college graduation has had many ups and downs. He is dual diagnosis which is a mixed blessing. It has made it easier to find and have insurance pay for hospitalizations- but creates another level of difficulty.
The key for him has been finding the right medication. For the last 2 years he has been on haldol and the difference is remarkable. He has tried 6 meds previously with varieties of levels of relief- but nothing like this.
He has always worked dog walking doggie day care, construction etc- but now sober and properly medicated has returned to the field he studied in college.
I sometimes afraid to relax as we have really been through it like most on this group- but I can see he is building a life.
He lives messily in his own place- we food shop together- he works full time.
He drives abs does his laundry at my house. We play scrabble and watch tv when he comes over.
It has been 9 years since his diagnosis and I have cried a lot for the son I lost and the son he was . I had to give up my dreams for him but not give up on him. I am now getting to know the man he is and can begin to smile.
I would love for him to develop a circle of friends but hopefully as he heals that can happen.
Last weekend he beat me soundly in scrabble- it may sound simple but to me that is a dream come true.
Lots to give thanks for!


We are going through this process now. Our LO is 29 with schizoaffective, his siblings (all older) and we have had meetings with his LCSW about future planning and the siblings were quite stunned at the depth of his illness as they have their own lives. In searching for a group home or such I am very discouraged and feel like no one in the “power” areas have any idea about the illness, write goals and such not based in reality and pass the buck to yet more organizations who don’t have a clue. So now I am in battle with the sate and the Medicaid providers in our area in NC which has only a bit 9 beds in group homes per county and my county has none. Yes this is a battle , we have a trust set, and one of the siblings has agreed to be trustee , but if there is no where for placement I just don’t know what is next

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