Thursday, December 27, 2012

Here I Come

I got to thinking...not only are medical records difficult to follow because of the "Medicaid Shuffle", but an entire surgery (an important one) could be omitted because it was not government. I don't know if the government even acknowledges that what was done is even possible. If not, then the surgery at Stanford never even happened. I'll try to put events in order.
The first hospital that I received treatment, was the trauma center. I was flown to this one. I remained in a deep coma at this place. I really don't have memories of this place, and therefor have obtained the records. According to those, I was unconscious and received many surgeries.
I was transferred to a rehab hospital. I credit this place for much of what you see me doing today. Sure I didn't do it while there, but they started the process. (This is also the place that started that medication, As time goes on, I see this medication as the reason for progression and it needs to be researched.)  Places may not be able to reach ideals, but they can do like someone else. That's why I use this place as comparison. There is no reason why other places can't do the same if it's already being done.

The rehab facility is also where my private insurance ran out and I started the government medical program. This is the reason why I'm writing this. I received procedures not government accepted and they were not covered by government medical insurance. Procedures not government accepted might be omitted.
I started Medi-Cal, the Medicaid program in California. Placement was not stable. My condition was permanent, and therefor placement should have been permanent. (My condition has not been permanent,  though, so I'm able to address issues.) First I went to a nursing home. I was there a few months,  then the owner sent me to another home. My mother came to visit, saw I was sick,  and I was re-hospitalized with pneumonia. That's three places already and it hadn't been a year yet.
 So I was back at the place that put me in the nursing home that moved me. Let's try this again.  They placed me in a sub-acute care facility. It was like a very large nursing home, except there were a few hundred patients. This time the placement was a few weeks when I got sick and was hospitalized elsewhere for dehydration. I came back, had a different room, and this time was interviewed by someone from the state. That place was sanctioned already, but my incident didn't do anything.
I had started the process at Stanford to shrink the anomaly in my brain. Once shrunken, doctors at Stanford would remove it. Stanford is the place, I'm afraid, will be omitted. They performed a surgery not covered by Medicare. It is because of that surgery I am most likely still alive. The blood clot in my head should have claimed my life a few years ago.
When Stanford did a craniotomy, I entered as  the resident of one place and left as the resident of another. My placement had changed and I wasn't even there! I was in 5 different places, not counting Stanford before being placed at  the next placement, El Camino Hospital in the sub-acute unit. (Six places from 2003 to 2004. This isn't very good.) I liked this place the best that took Medicaid. I was there not quite 2 years when that unit closed. The pictures and the intro of this are from someone there,
Rather than move into another Medicaid placement, I pushed for living with family. Technically I'd be living by myself with a family member visiting daily. The visiting family member turned into a visiting caregiver from a community program. I was familiar with the concept of Independent Living (a philosophy, a way of looking at disability and society., and I knew what resources were available. I could also do a more medical Independent Living because of my background, and the procedures I needed didn't require specialized skill.
So, from that last hospital I went into a regular house. First a rental elsewhere, to now living next door to my father. I have been here in this house for years...all the while I keep improving. This improvement started years ago, back to that rehab hospital, Santa Clara Valley Medical Center. The progress was able to continue because of a surgery I managed to get (Stanford). The life-saving and rehabilitative procedures have come from private sources. The government has only provided maintenance-I guess that's all they have to provide.
Neither of them have provided the case management. The VA has some sort of case management, so this concept isn't foreign. Hospital social workers won't do; the person can't be employed by a placement facility due to financial gain. Case management was an old job I used to do. It's odd that these old jobs I did prepared me. First case management, then therapy. If the process of managing a brain injury is going to continue for others, then those things, case management and continued therapy, have to be added in. There is no case management now (in the programs I have been in), and the therapy Medicare/Medicaid provides is minimal. Basically you are kept alive and disabled until you die. The people who have a brain injury and are on public medical assistance, will have to be skilled in case management and providing therapy. ("Hey I did it. Can't you? Oh, that's right, I'm an ASS.")
"Continued therapy doesn't have to be expensive. Just set up a home program ( at the time of injury when the initial rehab is done. Case management does annual checks and therapy can be checked at this time. The home program can be revised if needed (That's the continued part!). This will catch people like me. How many people right now are in a vegetative state that fMRIs have picked up thought?,, (There are plenty of articles. I could keep listing them, or you can look them up yourself.) Now, with the advancement of medicine, maybe one of these people will eventually move an arm. I did. (Now it's not too hard to believe I could type with that arm.) These people are still classified as vegetables. People like me are going to start showing up. There will be a group of vegetables...unless they are caught in time and reclassified. I need to be reclassified.


  1. Wow!! You've really helped yourself! However, as you say, you're ridiculously rare, so the others who are like you were previously in your PVS haven't got the current abilities to extract themselves. You might have had better case management under the Canadian or Australian systems, however. Australian Medicare applies to everyone and is based on a 1.75% income tax, unless you earn less than $25 000, when it's totally free. You can get the care you NEED, rather than what an insurer will pay and you don't get left classified the way you started after your injury. Disability assessment is repeated regularly to see if you need changes in support & services, but you may not keep the same person as caseworker, which can be a pest. However, once you get back in the community and on a Disability Allowance, the services are much harder to access. They're trying to put in place a National Disability Insurance Scheme (NDIS) right now so that services to individuals can be continued smoothly with assured funding. What happens now here (and probably with your state's Medicaid/Medicare budgets) is that funding under a scheme is notionally split among states and providers, who in turn need to spread the money over all their clients. This results in uneven coverage of people & is very difficult to fix as public health tries to treat people equally but funds are not infinite. It is pot luck whether you get a good case manager who pursues things or not! I have a friend here (@Naomi Clarke on Facebook) who has difficulty extracting enough oxygen from the air due to a failed operation on her spina bifida and repeated pneumonia. She needs a carer to watch her at night to make sure she doesn't stop breathing because her husband (yes, she has one!), can't stay awake 24 hours every day to do that! The funding for this is not covered by the government all the time and she has to fight almost daily to get oxygen cylinders and carers. It is ridiculous! The state has decided to keep her alive but they don't give her the means! She should talk to you!

  2. There are 15 countries in this world better to live than America. None of them have dealt with this issue, though. Soon, Canada will

    All countries with PVS will have to develop policies.