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.