I have moderate support needs autism, multiple mental illnesses (mostly trauma-based) and comorbid developmental, communication, coordination, and learning disabilities. I am also chronically ill and in a wheelchair.
I recently switched to a new aide agency for my 6-7 hours per day of hands on care. We've been together maybe 3 months. The owner and I have talked a lot about accommodating my autism because my Waiver is for my physical disabilities, and the agencies are not specifically trained on autism (though I have an autism coach, speech therapist, and psychologist who are).
However, the agency has decided that my self-injurious meltdowns, which happen 6ish times a day at baseline but usually only 1-2 of those times is while an aide is here, are "violent and aggressive", even though I only hurt myself, and put in 30 days' intent to terminate services with my Waiver Coordinator.
I can't even set up my own tube feeds or manage my own meds, get dressed, shower, have errands run, etc. without aides. My Waiver Coordinator is finding me a new agency, but I wrote her and asked her what the plan is to make sure the new agency is educated on autism and specifically my autism so this doesn't keep being a cycle.
My autism coach, who is my authorized representative with insurance, is also going to reach out.
But the answer I usually get to that question is that I should be on a Board of DD Waiver, and I do not qualify for one, not to mention all new Waiver applications are suspended in my state for 2 years. So physical health Medicaid Waiver is what I've got.
