Awful Care again.I hope your letter gets into the right hands.    Good luck.
Janice

From: Akua 
Sent: Tuesday, March 29, 2011 11:33 PM
To: [email protected] 
Subject: [TMIC] Awful Care again.

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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