Thursday, February 21, 2013

Failure to Communicate




What we've got here is failure to communicate. Some men you just can't reach, so you get what we had here last week which is the way he wants it. Well, he gets it. And I don't like it any more than you men.




 

That I am still "vegetative" is questioned by science...not the government.

Governments and religions have changed their positions, but it happens far less often. Hopefully my situation changes before  I'm dead.





 
 
Updated 8/5/2015


Thursday, February 14, 2013

Get Rid of the Word "Semi-Vegetative"

I was "semi-vegetative" at this hospital. This is the computer I did my first e-mail.



I've worked in home-based care, not hospital. When the "semi-vegetative" state was mentioned, I thought that this was only seen in the hospital. A person with this never would have made it home. Now at home, I had to look it up. It kept giving me persistent vegetative state (PVS).  Something wasn't right. I asked around. This state doesn't exist in the text-books. http://thoughtfulveg.blogspot.com/2012/02/talking-vegetable.html 
Here it is  I thought I moved up, and I hadn't. This is a false category...and a misnomer, too.


There is something that does fit this...

Behavioral criteria for the diagnosis of
Follows simple commands
  • Gives yes or no responses verbally or with gestures
  • Verbalizes intelligibly
  • Demonstrates other purposeful behavior, including nonreflexive movements or affective gestures that occur in direct relationship to relevant environmental stimuli, eg:
    • appropriate smiling or crying in response to specific emotional stimuli
    • vocalization or gesturing in direct response to linguistic content of questions
    • directed reaching for objects that demonstrates a clear relationship between object location and direction of reach
    • modification of touch or grasp to accommodate the size and shapes of objects
    • pursuit eye movements or sustained vision fixation upon a external visual stimulus
*At least one is required for diagnosis
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1071686/
(I didn't do all of these.)


What's the word I took out? It was "MCS." This stands for minimally conscious state. 

MCS is not PVS. MCS is more appropriate if I was able to handle money. Wait a minute! I was in a whole ward of people who were "semi-vegetative." Were all those people misdiagnosed? There's a problem in not being able to move up in PVS. 
Progression would be linear, and go from PVS to MCS...not to "semi-vegetative." It's not a giant leap. Just follow the textbook.
 






Thursday, February 7, 2013

I'm Still a Vegetable...That Handles Money


"Thank you. You, too." I just placed my monthly medical order for my supplies. It's a common task. Other people with diseases have to order their supplies. For instance, that person you see on oxygen. The things needed don't magically appear. They are ordered, monthly in my case. My order consists mostly of my food. The person on the phone asked about my feeding tube and reminded me of the nutritionist on staff. I do fine in managing my daily heath needs. I'm also able to plan and care for my future needs by ordering ahead of time. I must be aware of my situation. I'm not classified as such, though.

So, the Centers for Medicare and Medicaid Services got back to me:

"We apologize if the response previously provided was for something that was already taken care of. You are correct that there is no rep payee and you still manage your own affairs."

I remain vegetative, yet can handle money? For years I have been dealing with the fact I am cognizant, but vegetative...and therefore I am a lesser person. It appears this will continue. You have the answer...I continue to be the talking vegetable. Nothing has changed. Social Security/the government continues to pay me, yet reserves the right to remove me from my home, and place me in an institution...because I am vegetative although able to handle to handle my affairs. They have to be safe in case I stop.

Government disinterest in my situation doesn't have to stop others from being interested, though. It actually opens my situation to the public. Technically, I am a free citizen. There is free enterprise, and my situation then becomes available to private institutions and individuals. In the meantime, I continue to document through photograph and narrative. As always, I stand behind open science. All I can say to the government is, "You snooze, you lose." Capitalism can take over now. (Capitalism is not a political system. It's an economic system.)

The step after this might be to contact the Social Security Administration. I don't feel like banging my head against a wall right now, though.

I'm attaching the interaction with the Centers for Medicare and Medicaid Services. It starts with, "We are very sorry you were misdirected so much. OCR made an error in referring you to CMS." They don't even know what I am supposed to do. All I can do is reiterate my very last statement in the e-mail:

Again, I am misdirected and it is things like this that continue to make it appear that I am the one who is inept. For some reason it is believed that a person in PVS is unable to recover mental function. I recovered that long ago. It has been motor function in my case. I continue though, to receive treatment as if it is my intelligence.




From: 

To: "angelar70@att.net" <angelar70@att.net>
Sent: Mon, February 4, 2013 10:39:44 AM
Subject: changing your representative payee

Dear Ms. Ronson:
We are very sorry you were misdirected so much. OCR made an error in referring you to CMS.
The only agency that can help with your change of rep payee question is Social Security.
The below is from their website:
“You have the right to receive your own Social Security check unless SSA believes you are not capable of managing or directing the management of your money.
If you have a representative payee because of a physical or a mental disability, in order to become your own payee, you must show SSA that you are now mentally and physically able to handle your money yourself. You could provide:
a. A doctor's statement that there has been a change in your condition and that the doctor believes you are able to care for yourself; or
b. An official copy of a court order saying that the court believes that you can take care of yourself; or
c. Other evidence that shows your ability to take care of yourself.
Note: If SSA believes your condition has improved to the point that you no longer need a payee, we may reevaluate your eligibility for disability payments.
You have the right to appeal either the decision that you need a representative payee, or the person or organization SSA has chosen as your representative payee. You have 60 days to appeal a decision by contacting SSA. Please contact your local Social Security office or call Social Security at 1-800-772-1213 for more information.”
Health Insurance Specialist
Division of Medicare Financial Management and Fee for Service Operations
Centers for Medicare & Medicaid Services (CMS)-- San Francisco Regional Office
90 - Seventh Street, Suite 5-300 (5W)
San Francisco, California 94103-6708
Telephone: 415.744.3671 Paper Fax: 415.744.2706
My direct paperless fax: 443-380-6248


Re: changing your representative payee
From:
Angela Ronson





I am not changing representative payee. I don't have one. This was taken care of yrs ago. http://thoughtfulveg.blogspot.com/2012/11/competent.html What this says is I can handle my money, yet I remain vegetative. Social Security pays me, yet reserves the right to revoke that, remove me from my home, n place me in an institution. I have been in my own home since 2006.

Know that I made the above letter a public document, and any future e-mails I receive have the potential for being made public. Also, I am cc'ing this e-mail to various media.
For yrs I have been dealing w/ the fact I am cognizant, but vegetative...n therefore I am a lesser person. Due to this prior treatment, govt communications are being made public. It is unfortunate this behavior is not seen as discriminatory.


followup........RE: changing your representative payee
From:
To: Angela Ronson <angelar70@att.net>

We were responding just to a referral from the Office of Civil Rights about the letter you had attached and provided to them regarding a rep payee. The letter you sent to OCR dated January 24, 2013 was not clear as it implied that the rep payee situation was not taken care of.
We apologize if the response previously provided was for something that was already taken care of. You are correct that there is no rep payee and you still manage your own affairs.
If there is a current Medicare problem you have, please let us know and we will try to assist with that.



Re: followup........RE: changing your representative payee
From:
Angela Ronson

The letter n e-mail were made public, http://thoughtfulveg.blogspot.com/2013/01/regrettably-matters-you-raise-in-your.html n u can read them for yourself. A representative payee situation is never addressed.

My original statement to anyone medical:

I am vegetative, PVS. I know that this is unusual for you to be getting this, but technology now makes this possible. You will notice this complaint is all electronic. I have worked for years to get one finger to be able to type. The above goes to something I wrote. I have had a consciousness disorder. There is nothing wrong with my cognitive skills. I continue to have problems with speech and movement...not cognition.

Again, I am misdirected n it is things like this that continue to make it appear that I am the 1 who is inept. For some reason it is believed that a person in PVS is unable to recover mental function. I recovered that long ago. It has been motor function in my case. I continue though, to receive treatment as if it is my intelligence.