The Medicaid Shuffle Part 2

12/3/2020

Like I say at the end, "I ain't going back!"

The journey timeline goes as:

2002 Dec 16 Downieville, CA, clinic (stopped breathing)

2002 Dec 16 Grass Valley, hospital (not admitted n put on helicopter) 

2002 Dec-2003 Jan Sutter Roseville, CA, hospital, trauma center initial surgery

2002 Jan-2003 Fall Santa Clara, CA, hospital

2003 Northridge, CA, nursing home

2004 La Mirada, CA nursing home, not licensed

2004 back to hospital at Easter break with pneumonia, Santa Clara, CA

2004 (Spring-Summer) San Leandro (near Oakland), sub-acute hospital

2004 Summer unamed hospital in San Leandro/ Oakland area

SHTF

2004 Aug Stanford Medical Center, brain surgery

2004-2006 Mountain View, CA, hospital

2006 Merced, CA rental house

2006 - present Merced, CA, house next to family

Part 1 is at  http://thoughtfulveg.blogspot.com/2014/03/the-medicaid-shuffle.html. I wrote it a while ago.

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.  http://thoughtfulveg.blogspot.com/2014/03/the-medicaid-shuffle.html

I speak well enough to ask for a court order before that happens. Umm...I speak. People will be doing a double-take. I was placed in hospital care and forgotten about. I left the hospital and have been hiding out in my own home since 2006.

A big reason for leaving is what I call the "Medicaid Shuffle." When my after-stroke ordeal started, I had already been in two hospitals, the trauma center where I had the first surgery, and the rehab hospital. The trauma center records are the ones that can be interpreted as saying I am brain dead. I've read them, though, and they don't use that specific term. It does have a medical term that can mean that in some circles. I looked brain dead at that time, and that's probably how they were interpreted.

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."  http://thoughtfulveg.blogspot.com/2014/03/the-medicaid-shuffle.html

That's how the "shuffle" started. That's three placements right there.

I had pneumonia. The hospital that sent me to that nursing home fixed me up again and sent me to a long-term sub-acute hospital near Oakland (like across the street). I could look to the end of the block, and across the street was Oakland.

I ended up in another hospital a few weeks later with pneumonia and dehydration. I had to give a taped interview to a state investigator.

I don't count Stanford in the Medicaid Shuffle, but it was part of my journey.

July-Aug 2004 Surgery(s) at Stanford University Hospital. I stayed there a few days, but this is omitted from records because it's not government. They removed the AVM in my head that was to kill me. With this gone, of course I'm alive. The government omits it, so now it's a miracle that I'm still alive.  http://thoughtfulveg.blogspot.com/2016/11/dates.html

While having a procedure at Stanford, I was moved. The last hospital I went to was for over a year. When the unit I was in was closing, I didn't want to move yet again. I contacted a family member. I'm now in private residence. That original family member hasn't provided care since 2006. I rely on a local program and a daughter who is now 'old enough.' My father and nephew are next door if needed.

That was the "Medicaid Shuffle." I wanted to change their slogan to, "If the condition doesn't kill you, we'll move you around and make you die."

I AIN'T GOING BACK!

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." http://scitechdaily.com/canadian-man-in-vegetative-state-communicates-that-hes-not-in-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.