CAN ANY OF YOU PLEASEEEEEEEEEEEEEEEEEEEE HELP THIS WOMAN!  Those of us on
vents need to be aware of things like this!  I am on a vent 24-hours a
day.  This is one of my fears too.  I will now forward this to everyone i
can in Congress.  U should too.  Please fwd to everyone u know of in power
to help.

                    Bob Mauro [log in to unmask]
  -----------------------------------------------------------
            Read My Books On Sex, Love & DisAbility
          Find Them At: http://idt.net/~mauro/books.html

---------- Forwarded message ----------
Date: Fri, 1 Oct 1999 16:04:58 -0700
From: Blane N Beckwith <[log in to unmask]>
Reply-To: PCA Personal Care Assistance <[log in to unmask]>,
     Blane N Beckwith <[log in to unmask]>
To: [log in to unmask]
Subject: [PCA] Fw: HELPPPP!

              Please send replies to sender or to the list:
                        [log in to unmask]


--------- Forwarded message ----------
From: beverly granda <[log in to unmask]>
To: [log in to unmask], [log in to unmask]
Date: Wed, 15 Sep 1999 08:38:20 -0700
Subject: HELPPPP!
Message-ID: <[log in to unmask]>

My name is Sara, I am a 19 year old quad- same injury as Christopher
Reeves so you know I am vent depedant. I live in Davis and have found
myself in a HORRIBLE, HORRIBLE situation.  Please, please help me.
Following rehab at University of Washington 2 years ago, I returned to
California for what was supposed to be just one month in a facility
while my 24 hour a day home nursing care was set in place and all the
funding taken care of. I won't go into all the details but I ended up
spending ALL of 1998 institutionalized - first in an ICU for 5 months
(because of liability issues because I was on a vent), then I guess they
were not as concerned about liability any more and transfered me to a
subacute where I was for 7 months. I don't know if you have had the
interesting experience of being in a subacute, but suffice to say that
out of the 34 patients there only one other person beside me could eat
or talk. I definitely was the only person there that could think and
talk (this includes a few of the staff, sorry to be sarcastic)-
infections were rampant, they would not let me leave the room because of
"liability issues" and they were not staffed to provide the one on one
supervision of my vent I need if I go of the unit or just on the patio
to actually feel the sun.

Enough history. Finally got my insurance to cough up some money (after
20/20 told them they were going to do a story about me), and I got the
home health nursing and returned home 12/15/98. Things have been o.k. Of
course some of the nurses are nicer or better than the others- but my
mother and I met with the owner and manager of the home nursing agency a
little over a month ago and they told me that the nurses on my case seem
to be happy, they have not had any complaints. They also told me that
they have not had any applicants for months due to the nursing shortage.

Two weeks ago my nurses started to tell me to "watch my back" because it
appeared to them as if the agency was looking for a reason to drop my
case. They also told me that there had been several other cases that had
lost more than one nurse- and the agency was hurting- very short
staffed. Oddly right before this the agency took on another 24 hour a
day case of a 2 year old with CP, right in Davis (they were always
telling me it was very hard to staff in DAvis). My mother spoke with
them regarding her concern that this would effect my staffing. They said
not to worry that case already had all the nurses it needed the former
agency was just mismanaging the case and that there would be no
crossover of nurses because people who like to work with young adults do
not want to work with 2 year olds. WRONG- even as they were telling me
this, they had already scheduled 3 of my nurses on that case, including
my case manager who used to work 4 day shifts a week with me- then all
of the sudden dropped to 2!
Anyway, last week they had a staff meeting of my nurses which began by
having them sign a confidentiality waiver. The following day the owner
and manager show up on my doorstep at 7:30 to give me a termination of
services letter stating there is a nursing shortage and only 30% of my
nurses want to work with me so they are going to discontinue my services
10/10/99. Although always in the past they have insisted that my mother
be present for meetings- this time they specifically came when my mother
was not home, plus they made my friend that was here saying goodbye to
me because she was leaving to live in Texas leave because they did not
want a witness to what they were going to say to me. They tried to get
me to hold a pen in my mouth and sign the termination letter but I
refused! This letter was cc'ed to EVERY professinal that has ever seen
me,as well as my private insurance and Medi-Cal.
I believe they were short nurses on several other cases and would have
to close them, but my case had a good pool of nurses and it they could
pull them to cover the holes in the other cases they would only have to
close one case- MINE. My September schedule is perfect, not even one
hole- I am sure this is better than any of their other clients and seems
to contradict their statement that the nurses don't want to work with
me. My nurses have virtually no absenteeism and the majority are jovial
while here and I take them to movies, lunch, shopping, etc.....  It is
very hard to find a new agency here, and start all over again because in
general there is a nursing shortage. I had 7 nurses all vent competent
and trained and they have been with me from the start.  What am I going
to do? Do you know anything about the appeal process? Do I appeal first
to the agency and then to Medi-Cal or do both at the same time? While
the appeal is being processed must the agency continue to provide me
services?  Do you have any suggetions? I have e-mailed the Indep. Living
Center of Calif board members (the Sacramento RIL isn't really very
helpful), I have e-mailed the Berkely CIL director, and I have e-mailed
the National Association for Spinal Cord Injury back east who has been
the most helpful so far (but so far all they have said is file an
appeal). HELPPPP!!!!!!
There are many more sorid details such as my PCP is refusing to see me
now, because in their letter they stated that if I did not have other
nursing arrangements by 10/10 he was going to have to determine what
level of care and what kind of institution I should go to and he wants
no part of it. The other day I refused my lunch because I felt nauseous,
the following day a friend brought take-out and we picniced on my front
lawn. My mother read the chart and found that it seems as if the nursing
agency is now trying to build a case to have me institutionalized
because I am a danger to myself (5150). By not eatting one meal the
nurse called the doctor and told them I was endangering my health and
asked for parameters about when to have me admitted. Likewise the day I
ate outside with my friend the nurse charted that I was sitting in the
sun (I always do), therefore endangering myself and that I did not eat
lunch. She also charted that my friend was concerned I was endangering
myself- this was all crap. I ate everything my friend brought and she
informed the nurse this was so, and she never said anything about me
sitting in the sun. Up to that time I was scared of what would happen on
10/10. Now I am fearful every day that they are cooking up some reason
to 5150 me.         HELP!!!!!!!!!!!!!!!!!!!!!!!


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