“I still dread answering my phone. Afraid it means the police are there again. That there is another hole in his wall that another broken window has sliced his hands and feet.”
The following public comment was submitted by Rachel Johnson to the Interagency Autism Coordinating Committee in advance of its July 21-22, 2021 meeting. It is public record and reprinted here:
By Rachel Johnson
When I was 22 I gave up an admission to graduate school in order to move home and care for my brother, then 15, who in the course of 6 months had gone from the happy, smiling boy everyone knew and loved to someone I no longer recognized. It was July of 2016, what should have been a time to celebrate my graduation from school and start my career. Instead the next six months was spent being hit, bit, slapped, having the hair ripped from my head and emotional turmoil that affect decisions I make today. The police were called, in the end, almost nightly. Psych evaluations were a pointless exercise as most nights we brought him home. There were no resources. Only “have you tried” and deflection of responsibility.
“Instead the next six months was spent being hit, bit, slapped, having the hair ripped from my head and emotional turmoil that affect decisions I make today. ”
It wasn’t until Thanksgiving, a week where the police came over 20 times in a span of three days, that by pure luck we were able to send my brother out of state to a hospital willing to keep him. 72 hours later he came home. When again his behaviors started he was sent back where, as exhausted of this cycle as we were, he had his first inpatient behavior resulting in his stay until January. Again by pure dumb luck, not a system designed to protect him or my family, a social worker from Kentucky was able to leverage his resources to get him on a waiver which could result in admission to a residential facility in our home state of Indiana.
But before he could get he help he needed, his prescribed insurance days ran out resulting in his discharge and a nearly $15,000 medical Bill for the days Our Lady of Peace was willing to keep him based on his needs.
His final trip home as a minor lasted only a day. It ended with his hands around my neck and another night waiting, desperately, in a hospital for someone to help.
Before turning 18 my brother spent a year and a half in residential treatment. His behaviors lessened, but never went away enough to warrant his treatment team recommending he come home. But, just like insurance had decided the best course of action, 30 days before his 18tj birthday the state made the same crass decision. He came home. And I quit the brief career I was able to muster, and followed him through the door with no services, no supports, only my mother and I back in the nightmare that had resulted in severe PTSD for my one year of freedom.
A brief, 5 day respite where a group home placement was attempted allowed him onto the CIH waiver. Later I would learn that a failed group home experiment is one of the only ways for families to access the services he needed.
I was hired to be his caregiver. Despite my education and being his only service provider for most of that first year, I earned only 10.30 an hour of his massive budget. And that was how I spent 24, 25 and 26. Taking him to school. Picking him up. (An hour round trip so he could continue at the school he’d begun while on campus) and doing my best to keep him out of behavior.
As I exited my mid twenties and he entered his early 20s; the behaviors decreased at the sacrifice of my every waking moment. Finally, again through pure luck rather than a set system, we found a roommate and our patience on waiting lists to have my brother enter a waiver home were answered. And just as I tasted for the first time freedom, the pandemic took away all sense of self once more, and I resigned myself to doing what needed to be done.
Due to a bad roommate, my brother’s behaviors began to regain frequency. His life taken away. Again in a place without supports. To this day we struggle to keep a behavior specialist, not even to name the lack of staff to meet his needs. (And to say nothing about quality staff).
I still dread answering my phone. Afraid it means the police are there again. That there is another hole in his wall that another broken window has sliced his hands and feet. The infrastructure which should meet his needs are non existent. For families like mine, caring for someone with severe autism requires an entire being. Now at 27 my goals are as far away as ever. I have not finished graduate school, am allowed as far away as a supervisor in the company providing his residential services. For if I am not here I know he will not be taken care of. There is not the staff or money or professionalism to ensure his needs are met. And until they are, I can not begin to even think of mine.