Wednesday, July 12, 2017

MY ROOM IS NOT MY CASTLE

"I may take a while. We don't know when, but it will happen."   That's how my social worker told me I would be getting a roommate.

I tried to explain to her issues that I have issues regarding the bathroom due to my CP and my spastiscity. She didn't want to listen. Her response was, "Having someone in the room with you will not affect you using the bathroom."  There is not even a door on the bathroom. There's just a curtain. .It was clear she didn't understand. She didn't get it. I told her she had to leave. I called my family.  Then I cried. I am embarrassed by my behavior. I wish she would have understood. I wish she would have listened.

People are always coming in and out of my room. The aides come in to talk to each other aides when I am on the toilet. They don't care. Even though I have had more things lost and stolen than I can count, but it was still my room. The place where I wrote. The place where I  blasted my music when I was frustrated.

I was told they tried to do this to me once before. My previous social worker got so upset that she walked out of the meeting. I was not aware of any of this. My brother knew I'd freak out. I was not given a roommate.

My facility has a new administrator.  I have a different social worker. This facility is a business. I it's run by the book. That's fine. Except for the fact inside of this facility are people whose lives are affected by the decisions other people make.  People who go home to their own space. People who have a bathroom with a door on it. People who have rights. No one is going to arbitrarily change their environment.

Being on Medicaid has made me feel like a second class citizen. My family pays for the things I need. People are being moved around in this facility. Every time that I see maintenance on my floor I wonder if they are going to install the divider with the curtain. The divider that will transform my room into a real hospital room. I won't be able to trick myself into believing that I live in an apartment anymore.

When I came here there was a resident on my floor named Bernice.I am almost certain that Bernice was on Medicaid. She was allowed to remain in a private room until she died. The staff here cared about her comfort. They cared about people, not profit.

When I came here, dietary would see that you got you what you asked for if it was a special item.  Everything is generic and cost-effective now.

I am not angry. I am tired. I am scared. I am working on getting out of here. I hope eventually to be back in the community. I will have my own room. If I have to share a bathroom I am sure it will have a door,

This facility specializes in assisting people who have MS. If I had MS and I was on Medicaid, I would not be getting a roommate.I have the wrong disability.

 Privacy will always be important to me. Medicaid has made privacy a privilege. It is a right that should be afforded to everyone. It should not be based on your ability to pay.