Thank so much for your input.
Sadly, my complaints do not seem to do much because I am the first or
the only one to complain.
It has been true around here, and this sad state of affairs extends
to things like power outages -- when I am the first or the only one
to call to the fact that the four story two-block clinic does not
have a single
accessible exam room to the lack of paratransit in a county with the
highest suicide rate and more than 20% disabled.
I won't pursue this because unless or until I can find another
service, I know it will be traced to me, because everybody else just
puts up with it. I came home with TM in 2008 -- this is the 21st
century
yet people act like I am the only one --- not possible with more
than one out of five people with a disability. But I guess the rest
either kill themselves or hide or perhaps, leave.
Akua
Hello all; I've been quiet but reading folks posts. Too tired last
few months to keep up with much. But, I really want to reiterate
this. There is a state board in each state for RN's. Professional
conduct is a rule despite what the employing organization might tell
them to do. If they receive complaints on an RN from more than one
patient and there is a trend, they do investigate that RN. I don't
really know who oversees CNA's, but they are now required to have
certification, too. Having been on both the providers end of things
and the receivers end of things, I wouldn't hesitate to write the
state board, my state senator, or any other certifying agency for
health care I could find. I do know that when I sound angry, (which
I'm usually not, it just takes too much effort to do things
sometimes,) they don't listen too good. But, if we don't complain
in some constructive way, the problems are never going to be fixed.
That said.....the health care system drives me NUTS!!!!
Date: Wed, 30 Mar 2011 00:33:15 -0400
To: tmic-list@eskimo.com
From: a...@artfarm.com
Subject: [TMIC] Awful Care again.
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Well you asked. I'd been quiet because I'm barely holding on. I've
been 'buked and I've been scorned
as the song goes. And i had to take it. I have no recourse.
The letter in progress:
Nurse S. invited me to send a letter to the Board of Directors. As
she said this twice during the rancorous and upsetting visit she
made to my home.
The nurse insulted demeaned and threatened me. This after she asked
if i had any concerns
and i told her how i was left without food at Christmas time.
My aids car broke down. HHS did not offer me any other aid or any assistance..
If i had a private relationship with my aid, then i could have
rescheduled or found some other time.
As my relationship is with HH service and HHS did not work for any
accommodation, offered no assistance.
She told me tersely (insultingly) that it is my responsibility to
care for myself.
She told me that if I did not like HHS, then perhaps our
relationship should be terminated.
She said she felt uncomfortable about me using the services. That
you have 300 clients and there are others you serve who are in
wheelchairs ( i didnt understand what this was supposed to indicate)
This conversation took place while my HHS aide was out shopping for me.
I've said nothing but praise for my aide, which i reiterated.
Well how could I like my aide yet not like HHS she asked? I reminded
her that she had solicited my concerns, I had not begun the
conversation.
I guess it was foolish to answer the trick question. I was invited
to express concerns
and then brow beaten and punished for it.
I was told that the reason no accommodation would be sought for me
was because
all the other aides were"too stupid". These are not words that I
have ever used.
I've expressed frustration that my shopping list for Wegmans,
a computer print out with pictures as well as words, indicating
amounts and with a running total
could not be followed by several of the substitute people sent.
One woman brought back two bananas when the list said 4 pounds. The
total dollar amount
for this was around $2. This signified she understood little of what
was explained to her
about the list, the money before she went shopping. I described this
as "functional illiteracy"
Another aide could not complete the list (about $70 worth of
groceries) in the two hours allotted -- a task which takes my usual
aide about an hour.
I don't understand why there is so much victim blaming in her and
your organization's point of view. I use you because I need help. I
am paralyzed and in a wheelchair. If i could shop for myself, I
would. I used to in Rochester where there was paratransit and here,
for the few months that a a once a week bus was availalble, but as
there is no paratransit in Corning and no grocery delivery services,
I cant. There are things I cant reach, light bulbs that need
changing..
When I asked about the other aide for whom I had praise -- S -- she
told me that S has left
HHS.
______________________
That's where i left the letter, which i will not send until or
unless I can find someone else to shop for me
or if they dump me.
Now you know i thought i was picking my battles. I've never ever
ever complained about my aide -- though she's left me up shit's
creek without a paddle more than once. But she is the BEST of a
crap pile. This woman went off on me because i DARED to say
anything was wrong.
Bad Nurse said the problem was that the only day i was available was
Monday! I said I've NEVER said that, in fact I hate Mondays, I
always lose service because of holidays and three day weekends.
I've only said I can only do afternoons. She said well that's my
problem.l And i said - you cant grind me down any smaller than i am,
I am disabled and can't be dressed and ready any faster than I can
empty my bladder, do my bowel routine, change my diapers, and empty
my urine bag. If that wasn't the case then I wouldn't need to use
your services.
WHEN I told her she was insulting and demeaning I would no longer
speak to her --- and stopped talking. Totally. You think I'm stupid
she said to me. I said nothing.
She freaked and started apologizing. I told her she had the power
and was oppressing me and then she got cute -- i don't have power
she said. I reminded her how she just got through telling basically
that if I was SO UNHAPPY With them, then perhaps i should go
elsewhere.
Then she resaid it , in a babying voice, as if to fix or recast it,
it was horrible and sickening. I stopped talking and started praying
and chanting to myself,
I talked to her again the next day -- turns out she was supposed to
get my current financial information -- to see if I still qualified
for the subsidy that makes their inflated costs bearable, enabling
me to pay
$25 a week on top of groceries vs. $50 a week on top of groceries.
All this abuse and it's not for free!
so she called from the office to do what her visit was about. And if
i'm still with them, I'll see her
in 6 months when she comes to watch B in my house-- which is what i
thought she was
here for yesterday.
Akua
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