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He is now helped by the State. He pays 30% of his monthly income for his apt, the State pays the rest. He has a State Coordinator who is in touch monthly by phone or visit. He has an aide one day a week for 5 hrs. Appts are set up for that day if possible. He has been in this program now, 5 yrs. I, 75, no longer have to be responsible for him when it comes to Medicaid and Medicare problems. Thats his Coordinators job. I can step back. I am back up for appts that cannot be made on Fridays. I may still need to do Medicaid renewal because I provide most of the info. All I need to do now, is be an Aunt. I am his POA and payee for his annuity and trustee for his special needs trust.
You maybe able to get help thru Medicaid in home care. Depending on the State you may get paid but it won't be much. If not, you may be able to get an aide for enough hours u can work.
Tell us about what medical and mental health support you access at present time in your management of his care.
I am thinking that with a long history of caring for your son you may have access to more information than most of us do.
Are you familiar with Nami.org?
I think they may give you better information that we can.
There are also great support groups on Facebook for parents of children with mental health challenges.
Usually grown children who are no longer at the age of dependence according to IRS are not supported with in home care. I will be interested to see if you are able to access information that indicates otherwise, and am wishing you good luck.