Have you reached out to your local Regional Center? They have amazing resources and programs (work, job coaches, day programs and living arrangements) available when kids age out from the schools. The Regional center can help with all your questions as well talk about their programs.

As far as a special will, perhaps you should look into a special needs trust and a CalABLE account. Since your child is only 5 there is a lot of time for growth and development so try not to worry too much, the future is hard to predict 👍 That rabbit hole can be a very dark place.

It's really way too early to be pre-planning anything.
So much changes and that can happen in a very short time as well.
Just make sure that his current situation is the best that it can be at this time.
I've made Myself sick dwelling on such things, when I found somewhere I thought that would suit My Son, it changed.

@A MyAutismTeam Member can I ask where you reside? We live in Charleston, West Virginia, and there are absolutely no services whatsoever here. We are really struggling to find a place for our 19-year-old, who is medium to high functioning, but low IQ and severe OCD and anxiety. She will most likely never be able to drive, (which is a requirement living in such a rural location) as her anxiety is too high and she could most likely not pass the test. I am actually from Washington DC where I know there are millions of services and group homes but unfortunately we have to live in the state for the time being. Would like to know if there are any states close to us that have good services that we may be able to commute to as a near future option. Thank you in advance!

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A MyAutis...

Thanks for your time and very detailed answer 🤗

You can set up a disability trust, which I recommend. This will protect any assets from being depleted if or when a care facility becomes necessary. Where I am group homes average around 200-300 dollars a day and insurance pays for most but they will charge an income based copay that leaves most residents with around 100 dollars a month for personal expenses. Insurance will not cover anything if they have more than 2000 dollars in assets and will require those funds to be depleted before stepping in to pay. Having the money and assets protected by a trust means they cannot require the assets to be depleted and the funds can be provided as needed. Medical/dental issues not covered by insurance, personal use and even vacations. I hope it's the same in other states so you may want to research but here we have several different kinds of care homes from 24hr supervision locked facilities to 4 bed group homes to 100 bed cbrfs and single or double assisted apartments. Placement is based on needs of the individual. There are day programs, supportive work environments, facilities that assist with job searching/training and even getting job coaching. Tour companies with disability vacations from 1 day to weeks that provide staffing and personal care assistance during the trip. Lots of opportunities and options. I spoke with a lawyer about setting up the trust as i was protecting more than just money, but from what I understand you can set them up at a bank as well.