Sunday, March 30, 2014

The Medicaid Shuffle

"A Canadian man who was thought to have been in a persistent vegetative state for more than a decade has been able to communicate to scientists that he isn’t in any pain."  

Now imagine someone like this with a very rare disorder that makes the brain injury go the other way. The person gets smarter. The person is so smart, that she figures out how to move a finger and she can now type.  That's all I can figure that happened to me.

Nothing like this ever happened before, yet I am writing this. The above video is the closest I could find to an explanation. Yes, I am still unconscious and in a coma. Comas can be eyes open. "Vegetative" is a coma, and I am vegetative. People are amazed when I tell them. Doctors stare at me. My medical records reflect that I am vegetative.

Supposedly my brain was all wiped out by a brain bleed. I only had some brainstem allowing a heartbeat. I didn't even have a full brainstem! I couldn't breathe and was on a ventilator. There's a big hole in my neck now that is slowly getting smaller now that I breathe. I wasn't ever supposed to talk. I do now and that's getting better as it wasn't understandable. As for writing this? Amazing is all I can say,

All of that didn't stop my bills. I couldn't believe the misconceptions I've seen. Since I opened my eyes, but I am still in a coma, I can tell you what happens to bills and whatnot. 

I was employed at the time of accident, so I had insurance. It was very good insurance, too. (If a person does not have insurance, there is a way to get government assistance,  but it may not cover everything.) Medical insurance from your employer takes care of medical bills while you are employed.

If you don't go to work, you don't stay employed. Although I technically wasn't conscious and couldn't talk, I had long periods of lucidity where I could communicate with my mother by blinking. The doctor sent a letter to Social Security. Social Security suspended my payee so I could pay my hospital bills myself. The payee was slow and usually late. Social Security left me unconscious. Hospital bills are immediate. Bills don't stop while you are in a coma. I had good insurance that I didn't want to lose since I couldn't go to work. I kept it under COBRA and was forced to forgo all of my other bills. COBRA is expensive.

Eventually the private insurance ran out. The hospital I was at moved me to a Medicaid bed. (The bed was actually called that!) I waited in that bed until I was moved out of that hospital. Initially I was sent to a care home that wasn't near family. That place sent me to another home a few months later. I was at the second home a few months and then ended up back in the hospital I started in. I call this moving the "Medicaid Shuffle."

Mind you I'm still technically unconscious. I could say most words by then. So I'm unconscious and talking...and could pay my bills. This second time that I was placed, that hospital sent me to a "Sub-acute Hospital" which was nothing more than a large nursing home. I was doing the Medicaid Shuffle. This is how long-term disability is dealt with by the government in my case. 

A few months later  I ended up in a different hospital with dehydration. I was lucky I didn't die. That hospital fixed me up and filed some sort of complaint. I went back, someone from the state came and asked me questions. I was moved while I had surgery at yet another hospital.

That next hospital placement lasted a little over a year. It was a long-term sub-acute unit at a (real) hospital. Medicaid does not pay enough. The hospital had to close that unit. I didn't want to continue doing the Medicaid Shuffle. All the residents were being moved to nursing homes. There was an option for a family member to sign you out. I managed to do that. I left that hospital unconscious, and that is how I remain.

Now I live in my own home. I got back custody of my kids and finished raising them. I sometimes talk on the phone and I pay my bills. I can mostly dress myself and depend on someone to hook up my feeding tube, place me in a wheel chair, and do routine household chores. I'm still unconscious and the state retains the right to place me in a nursing home.

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