I have a daughter who has autism. Her autism is severe. She has issues with aggression and self-injury. After trying services available to her on the BDDS waiver, she was still having issues that caused her to be a danger to herself and my son who is also on the spectrum. I have to look into placing her in a residential facility. This was not a decision I made lightly. 
She is currently in one of the only 2 facilities in Indiana that will take someone with her level of need. I see her regularly and communicate regularly with the people at the facility. I found out recently they aren't making her go to school, her medical protocols are not being followed, they don't even make sure she is groomed and if I don't specifically ask, I don't find out. 
We have protocols in place but all they have to say is they didn't see it and they are absolved. 
State hospitals were shut down over 50 years ago and nothing else appropriate has been put in place for people who need extra care like my daughter. Families like mine are struggling physically, emotionally, financially, every way possible because there are not options for us. I had an entire team including the department of developmental disabilities and Children's Mental Health Initiative and spoke about all these issues. My home was destroyed due to the behaviors, I couldn't work, and it was unsafe for my son. The suggestion I got from CMHI was to relax and get my nails done. I have called the Department of Children's services on myself asking for help and got nothing. 
So now my daughter is in a residential facility where I know she is not being taken care of properly and am being told that if I am not happy with the services that I can take her somewhere else. Everyone knows there is nowhere else. And even this facility will only take her until she is 21. 
Who is looking out for the people like my daughter and when are facilities going to be held to the standards they promise? Why has nothing been done in over 50 years?