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A MyAutismTeam Member asked a question 💭
Livermore, CA

My husband and I have an only child, our daughter, 33 years old, with autism....I am wondering how to establish a caregiver for her after we are gone. We have a special needs trust....but we want someone who will handle her needs and resources..someone who will invite her home for Thanksgiving, someone who will advocate for her....We have no immediate family who can do this....I would appreciate if anyone out there could let me know where I could get this kind of help? Thank you! Carol

January 7, 2017
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Answer Summary

Members rallied around a mother seeking guidance on establishing long-term care and advocacy for her 33-year-old autistic daughter after she... Read more

Members rallied around a mother seeking guidance on establishing long-term care and advocacy for her 33-year-old autistic daughter after she and her husband pass, with many sharing they face the same fear and planning challenges. Several members offered practical advice, including setting up a special needs trust through a specialized attorney, designating multiple caregivers or monitors to reduce financial abuse risk and share responsibilities, and consulting county community mental health services about group home options and in-home care arrangements. A recurring theme was the deep desire to find not just financial administrators but people who will truly love, include, and advocate for their children, with parents expressing both solidarity in this anxiety and gratitude for the shared wisdom and support.

A MyAutismTeam Member

Some people have the lawyer handle the trust and do you have any agency that maybe able to provide some type of service.

Harriet@

January 9, 2017
A MyAutismTeam Member

I am in the starting stage of trust planning right now. If you have no immediate family for this, how about a close family friend or someone in your extended family? It can be multiple people also so you don't have to settle on just one. I plan to have three people, two family and one professional doctor, monitor my kids when I no longer can. The reason is two pronged. Firstly, it reduces the likelihood of financial abuse of the trust. And second, this way it's less stress on them all as they can share responsibilities as agreed upon.
There are organizations and estate lawyers who would administer the trust, but I get what you are saying, you want to find someone who would love and accept her. Speak for her best interests if necessary. Me too for my two on the spectrum.

January 8, 2017
A MyAutismTeam Member

Yes defintley speak to an attorney to find out what you can do for your son.

May 24, 2017
A MyAutismTeam Member

My son is 33 years also, the reality for my son, is only a group home setting, my health is deterioring and I am not sure how long I have to live.

After having a meeting with network 180, if I died today, and if his mother and sister cannot take my role in his life, he would end up in a temporary institutional housing, until a group home is available, presently their a 2 year or more waiting list for group homes.

It been suggested for me to have attorney set up a special needs trust, yet I don't comprehend how a trust would help my son. if I have no money to put into a trust.

There is a special situation in Kent county I heard of, where the parents purchase their child a home, yet I am not sure how the direct care services are paid for, this consumer has 2 staff on duty in their home 24 hours daily. you may want to consult your county community mental health services.

February 28, 2017
A MyAutismTeam Member

Thank you all for sharing this helpful information. My daughter is 12 and Ive been wanting to find out about future needs- what is a special needs trust and how should I go about obtaining- what does this do for her- will someone explain this process please? thank you

February 6, 2017

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Pensacola, FL

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