Family and Caregiver Schizophrenia Discussion Forum

After we're gone, what then?

Sorry about the subject at Christmas but I’ve got some real anxiety around what is going to happen to our son after we are gone. I believe others have voiced this also.
We had thought we had a plan but he went off medication and it is clear we can’t live with him when he’s psychotic and is having command hallucinations.
We have property and plan to partition just enough for him to have some privacy and a small cabin. We can have someone come in and look in on him or have someone live nearby. It depends on whether he continues with medication and improves.
We set up a special needs trust where all our assets go to support him. We would let the bank know what expenses they need to pay. He doesn’t drive at present.
Another option would be to put him in a group home in the city. He is pretty naive and would need someone watching over him. I like the idea that he would have others like him to talk to but of course this also presents uncertainty.
What solutions have you come up with for your elderly years or after life? Do you care to share? Thanks

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Last year, I was really ill and this question frightened me. Now I’m okay health-wise and I kind of live day to day. I guess that would be a good side effect of recovering this much.

If there’s money, someone will help your son. Leave instructions. I was told to write down what to do for our family member, including what is needed and why. There is a list of activities of daily living and that could be a starting point. I couldn’t find an article that wasn’t about elder care, but here’s a start:

I think it’s really important that our family members become as independent and self-determining as they wish to be. So, that would be my number one thing: to try to find someone who understands that our family members are adults and have their own goals, wishes, and ideas that are primary. While also somehow making sure they have clean laundry.

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This is hands down my biggest problem, plenty of money but no one to look after them. The most sad part of all of this for me is that the two of them might be separated… This would be horrible… Given this, it is clear that the system will blow through every penny with court appointed executor and some type medical oversight… I have calculated that they can last maybe 10 years on what I leave behind coupled with my SS annuity for wife… After wife is gone daughter will probably end up on the streets to her last days, then it is truly over…

GSSp, can you leave your place to them and hire someone to come in and clean and check on them? It seems like monies would last way longer that way. The court might be able to appoint a guardian for each for the money and that would be two more people checking in each month.

Yes, that is the plan as this place is a fortress. It is all written down…


Hi mom. We have an appointment with a lawyer to set up a special needs trust, but it sounds like it may be different from what you have set up.

The way the lawyer described a special needs trust for our son was that a person, like a responsible sibling or an uncle, would be in charge of supplying inheritance money “to enhance the quality of life”, without our son losing his Social Security benefit and Medicaid. There was no mention of a bank doing this job. Does your trust sound like what we were told we are getting?

Does anyone else out there have insight about what to do and not do when setting up a trust? I don’t want to mess this up. It’s an expensive process.


GSSP, unless I misunderstood something I read in our SSI paperwork, I think your daughter can collect your Social Security, as well as your wife, as long as her illness made her disabled before a certain age. I think that age is 22 in my state. Have you heard anything about this?

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Yes, it varies from state to state, so hard to advise, need a good estate/probate/family attorney…

Yes, you are correct but she is to old and we started the SSD/SSI last year and the attorney is working now after we were denied… Typical except for @Jan : her story is a good one…

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We went to an attorney who specializes in estate planning. Jeb’s brother gets his half plus a portion of Jeb’s. We have asked that he use the extra he is given to help Jeb with some sort of housing. Jeb could rent the housing from his brother. Whatever our older son uses it for, he shouldn’t have to use his own money to care for Jeb. Jeb’s part goes into a special trust that is for his expenses and cannot be withdrawn in a way that would jeopardize his benefits. The details on the trust were extremely long - there are lots of rules about what the money can be spent on, those details are why we needed an attorney with estate planning.The money can be used for medical care, special equipment and other things. As Day-by-Day mentioned, quality of life enhancement - it could also fund Jeb’s annual camping trips. Pay for insurance for a car, internet… The trust is overseen by Jeb’s brother. In the event that Jeb’s brother predeceases us, we have two back up co-guardians who would share his brother’s inheritance and become Jeb’s financial trustees. Its not enough for Jeb to live on for very long without government assistance, his kidney immunosuppressives alone would finish it off in short order.

We did ask his brother ahead of time if he wanted to be a trustee for Jeb. He had to have a will written at the same time. In Texas, if you die without a will there are laws set in place as to how whatever you leave will disbursed to relatives.

The attorneys would have much preferred a bank sort of trustee, they objected strenuously to our co-guardian back up plan. The back up people have to both sign off on disbursements from the trust. They are close friends of ours and are not friends with each other. Not unfriendly, they just don’t really know each other.

At any time, maybe if Jeb becomes well enough or if he becomes too difficult, the trustees can release the money directly to Jeb.

We can only do so much to protect our children. At least its something.


Hope, why did the attorney prefer a bank trustee rather than Jeb’s brother and your friends as back up to him?

In retrospect, would you change anything about how you set up your trust?

The attorney felt we shouldn’t trust our friends. These are close friends, one of them is like our third son, we are “velveteen grandparents” to his child.

The other is part of a family we are quite close to - her parents are deceased, we spend major holidays together.

One is quite savvy about money and legalities. The other has known my son since he was 8 years old.

One is the age of my son, the other is just 6 years younger than me. If the latter was younger it would be better.

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Yes, the bank would hold the trust and the executor would make sure disbursement were in his best interest and oversee.
We have that part finished. I guess now I want to make sure there are safe guards in place that he is truly looked after. With this illness, things tend to change quickly, don’t they?
I hope your daughter is still improving. I am so hopeful for her. Her communications were excellent in my opinion and I was so relieved that she did seem self aware. Thank you for sharing.
I do hope you get to relax over the holidays.

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I have heard that there are some kind of NAMI offshoot groups where the families form an organization to look after each other’s children. They leave their assets to the organization. I was not able to locate one in Texas. I tried.


I am in my 50s so hopefully God will grant me 30 more years to train up my daughter to be independent and learning to control her expenditure. Every day, a sign she is doing her clothes and not spending the money because she will need it in the next few days gave me hope. At the same time, my wife and I are sending the message to our other children that they have to take care of their sister when we are gone. Our aim to build up independence for our daughter who is schizophrenic will hopefully alleviate the demand on her siblings. Well, all we have is hope and we will keep trying.


I, unfortunately, am in a similar situation as many others except I am the only family for my daughter. While my daughter is only 10, if something happened to me, she would have almost no one. I am hopeful I have some time to figure everything out, and put a plan together for her.


As opposed to an organization without feelings. SMH. I get some people are poor with monetary decisions, but eh, didn’t our financial (US) system cry about the collapse they created a couple of years ago?

@Mom2 I like your plan to provide a private cabin with a trust to keep that up and taxes paid as well as a companion of sorts who does not handle the finances seems sound. Not sure the group home would be good move after you are gone, because ill or not they still grieve, and that would be 2 traumatic life events close together.


@Chong one of my favorite plans is my son turning out to be one of the lucky ones that experiences a lightening of symptoms in his 50’s. He becomes stable enough to live here peacefully with his dad and I. He could, maybe, even take care of the property here when we become incapable, making it possible for us to live in our own home as we age. (not likely, I know, but it is nice to think about the possibility of Jeb being well enough to mow the property weekly without being afraid)

I know that Jeb would prefer to be able to support himself somewhere else, away from us. While I would love that for him, I think that may be too much to hope for at this point in his illness.

@thereisalwayshope, my older son’s response to our back ups for him was “you have chosen a man and a woman who are complete opposites, anything they agree on would nearly have to be the right decision”.

Yes, my thoughts exactly, even if they make the wrong decision, at least its someones who know Jeb’s background and cares.


I see a lot of people mention the special needs trust but another possible way to set aside money for your loved one is the 529 ABLE account.

The Achieving a Better Life Experience (ABLE) Act
The ABLE Act, which was signed into law in December 2014, allows Americans who are living with disabilities to save money for college and other expenses in a tax-deferred account as a supplement to private insurance and public benefits.
529 ABLE (529A) accounts
Similar to a 529 college savings plan, 529 ABLE accounts are savings accounts administered by the states. Money can be withdrawn tax-free when the funds are used to pay for qualified disability expenses. The contribution for 2016 is $14,000 (the amount of the annual gift tax exclusion) and many states have total contribution limits that exceed $300,000.
However, if a person’s 529 ABLE account balance exceeds $100,000 they will no longer be eligible for SSI benefits. Also, if the beneficiary dies, states will be able to recoup some of expenses through Medicaid.
The signing of the PATH Act in 2015 removed residency requirements from 529 ABLE accounts, giving individuals the option of using any state’s plan. Yet some states may offer tax benefits for those who use their home state’s plan.
Why 529 ABLE accounts are so important
Prior to the ABLE Act, if a person with a disability earned more than $700 per month or had savings or other assets in excess of $2,000 they risked having to forfeit eligibility for government programs like Medicaid. The only way families could get around this was to set up a special needs trust, which is often very costly to do. As a result, there has been little incentive to save, and many people with disabilities end up living below the poverty level.
Qualified disability expenses
Qualified disability expenses include education, job training and support, healthcare and financial management.
To qualify for a 529 ABLE account, individuals must have been diagnosed with a significant disability before they turned 26 years old, with a condition expected to last at least 12 consecutive months. The individual must also be receiving benefits under SSI and/or SSDI, or be able to obtain a disability certification from a doctor.
Parents who have saved money in a 529 college savings account may be able to roll the funds into a 529 ABLE account in the event the beneficiary is later diagnosed with a disability such as autism.
Investment options
States will provide families with multiple investment options to suit various savings goals and risk tolerance levels. Account owners will be able to make changes to their investments two times per year.
States with active 529 ABLE accounts
Each state will establish their own regulations to make 529 ABLE accounts available. Here are states that currently or will soon offer ABLE programs:
State Plan Name Residency Requirement State Tax Deduction Total Asset-Based Expense Ratio Debit or Purchasing Card?
Alabama Enable Savings Plan Alabama
NO NO 0.50% - 0.56% YES
Alaska Alaska ABLE Plan
NO NO 0.34% - 0.38% NO
Colorado Colorado ABLE
NO NO 0.34% - 0.37% YES
District of Columbia DC ABLE
NO NO 0.34% - 0.37% YES
Florida ABLE United
YES NO 0.035% - 0.290% NO
Georgia Georgia STABLE
YES Contributions to the STABLE Account Plan are not deductible for Georgia state income tax purposes. Earnings from the investment of contributions to a STABLE Account Plan will not be subject to Georgia state income tax, to the extent such earnings are exempt from U.S. federal income taxation under Section 529A. 0.19% - 0.34% YES
Illinois Illinois ABLE
NO NO 0.34% - 0.38% NO
Indiana INvestABLE Indiana
NO NO 0.34% - 0.37% YES
Iowa IAble Plan
NO Iowa individual taxpayers who make a contribution can deduct up to $3,239 for 2017 (adjusted annually for inflation) of their contributions including rollovers from a Non-Iowa 529A plan, in determining their adjusted gross income for Iowa income tax purposes. 0.34% - 0.38% YES
Kansas Kansas ABLE Savings Plan
NO NO 0.34% - 0.38% NO
Kentucky STABLE Kentucky
YES NO 0.19% - 0.34% YES
Louisiana LA ABLE
Massachusetts Attainable Savings Plan
NO NO 0.57% - 0.94% YES
Michigan MiABLE
NO Contributions to a plan account are deductible, in an amount not to exceed $10,000 for married taxpayers filing jointly ($5,000 for single taxpayers and for married taxpayers filing separate returns), in computing the contributor’s taxable income under Michigan law. 0.50% - 0.78% YES
Minnesota Minnesota ABLE Plan
NO NO 0.34% - 0.38% NO
Missouri MO ABLE
YES Missouri residents and taxpayers may deduct the amount of their contributions to a MO ABLE Account from their Missouri adjusted gross income. Annual contributions made to the MO ABLE program up to and including eight thousand dollars ($8,000) per participating taxpayer, and up to sixteen thousand dollars ($16,000) for married individuals filing a joint tax return, shall be subtracted in determining Missouri adjusted gross income. 0.19% - 0.34% YES
Montana Montana ABLE
NO Any earnings on contributions are not subject to Montana state income tax. Account assets grow free of current Montana income tax and are tax-free if withdrawn for qualified disability expenses. 0.34% - 0.37% YES
Nebraska Enable Savings Plan
NO Contributions by anyone who files a Nebraska state income tax return are eligible to receive a Nebraska state income tax deduction for their own contributions of up to $10,000 ($5,000 if married, filing separately). 0.50% - 0.56% YES
Nevada ABLE Nevada
NO NO 0.34% - 0.38% YES
New York NY ABLE
North Carolina The NC ABLE Program
NO NO 0.34% - 0.38% YES
Ohio STABLE Account
NO Contributions are deductible for Ohio state income tax purposes, up to $2,000 per year, per STABLE Account contributed to, with unlimited carry forward. 0.19% - 0.34% for Ohio residents YES
Oregon Oregon ABLE Savings Plan
YES Contributions to an ABLE account with a beneficiary under the age of 21 are deductible for Oregon income tax purposes up to annual limits. For 2016, the deduction is $4,660 for taxpayers filing jointly and $2,330 for single filers. 0.30% - 0.381% YES
Oregon ABLEforAll
NO Contributions to an ABLE account with a beneficiary under the age of 21 are deductible for Oregon income tax purposes up to annual limits. For 2016, the deduction is $4,660 for taxpayers filing jointly and $2,330 for single filers. 0.30% - 0.3810% YES
Pennsylvania PA ABLE
NO NO 0.34% - 0.38% YES
Rhode Island RI’s ABLE
NO NO 0.34% - 0.38% NO
Tennessee ABLE TN
NO NO 0.00% - 0.62%. NO
Vermont Vermont ABLE
YES NO 0.19% - 0.34% YES
Virginia ABLEnow
NO A Virginia individual income tax deduction of up to $2,000 per account on contributions, with unlimited carryovers to the extent of the contributions. 0.37% - 0.40% YES


Very helpful information and ideas!