I have experienced same though in WA State.. My adult daughter is carried on my SSDI due to being diagnosed so early on as DD in our State with me working for State which put her into different SSI category.. and there has been no help here, but our State has longstanding low rating in US for mental health care. Mine has been diagnosed with PDD-NOS to Aspergers. and when that went away, to Autism without Intellectual Disability.. I Wish You and your family all the Best.. Wish I knew what to tell you.. for me, I went through Disablity Rights organization in my State.. NAMI to help for advocacy, participated in legislature sessions yearly to present issues in my family member's situation.. can I tell you it was successful?? end game? no, but DRW and NAMI have been very supportive over time.. It is not easy and so stressful as we get older and fight for our children's best from time they are young through young adulthood.. Mine is almost 28 now.. and we are buried.. she is institutionalized.. such a bright and funny being.. and in with severely mentally ill people .. 6 yrs.. almost.. as of August.. I hope so much best for your son and all I can say is keep on advocating for all you know he needs.. you know best.. not systems.. I have not been able to overcome that in my state.. Hope you will be able to.. <3 .. My heart with you and your family.. <3