Wednesday, December 28, 2011


We had a great Christmas.  It was great to be with family.  My aunt and uncle have taken us in as their own, and Walker's parent's are basically have three daughter-in-laws now.  

Ok, I also had an exhausting Christmas, providing physical care while drenched in feelings of resentment and sadness, mourning the absence of my mom, and continued selfish and embarrassing mourning of the the life I used to have and the life I thought I was going to have.  I cried, a lot, and for a lot of reasons.  

But we survived and I had a sad time, and a hard time, but also a good time.  

The night before Amy went home, she pleaded with us not to send her back.  She told us how they still weren't giving her coffee, were still giving her "bed baths", how a month after her glasses broke she still doesn't have new glasses, how [MeanyCold] recently accused Amy of kicking her (fyi: impossible).  She sobbed and sobbed, and I felt sad for her and angry at her house, then sad for me and angry at her, in circles.  

I told her, Amy, I'm handling stuff!  It's going to be ok!   What I don't tell her is that I'm lying -- to her and to myself.  I'm handling stuff, but nothing changes.  

Yesterday, I sad down and churned out my followup emails.  I've been emailing Amy's QSP for a month and a half, but she NEVER emails back.  I was starting to assume she'd been, so I forwarded all the messages to her boss -- the primary issues covered in those emails: 
  • Amy has been without appropriate glasses for a month.  I have been emailing for a month.
  • Amy wants coffee in the morning.  39 days, multiple emails from me.  No response, no coffee.
  • Amy does not like "bed bath" and prefers showers.  39 days, multiple emails from me.  No response, still "bed baths".
  • Amy is supposed to be having range of motion exercises done daily.  This has never happened.  Ten days ago, I send her new RX and directions for range of motion activities.  No response, no exercises. 
  • Amy is staying up till midnight on New Years; please alert staff.  Ten days with no response. 

And then there are the constant act of aggression from MeanyCold which have NEVER been responded to.  I sent this email, following up on the BIG email a while back.  You know, the one after I found out that MeanyCold is telling people that I called her a bitch and the n-word.  If you don't remember, it's below, since I sent this message as a reply to that one.   
Awaiting response and resolution on the issues in the email, as well as several other things previously addressed in emails to Amy's QSP.
November 19: “There was a meeting in the house today, after which after which [MeanyCold] told Amy that she's ‘sick of being treated like a dog’ and ‘I don't like it when your family lies’ and that she wants to have a meeting about this. 

This needs to stop.  Elmwood is Amy's home.  She should not be mistreated or antagonized in her home.  Amy is not lying.  Her family is not lying.  Amy does not need to go to a meeting regarding this.”
November 20: “Last night, November 19, [MeanyCold] told Amy when it was that Amy had told [MeanyCold] that [FriendlyBigMouth] hit her. Amy assures me [FriendlyBigMouth] has never hit her and that she never said [FriendlyBigMouth] hit her.  In any case, why would [MeanyCold] be bringing this up to Amy? We ask that people stop antagonizing Amy and making her feel uncomfortable in her home.”
December 18: “I emailed earlier this week to let you know that Amy would home late on Saturday.

When Amy got home last night, [MeanyCold] asked Amy why she got home so late and why she didn't call.  Amy tried to call the house, over an over, at least four times, starting at 10 pm to tell [MeanyCold] when she would be home.  She left two messages.
[MeanyCold] told Amy ‘I'm not gonna work here very long if this crap keeps going on’.  She also told Amy she was rude.  When Amy asked if her chair was plugged in, [MeanyCold] told her that had been, but that her sister had unplugged it, and she she wasn't going to plug it back in.  One, we had plugged it back it.  It came unplugged while we were taking pictures of the broken piece, then we plugged it back in.  If she found the chair unplugged, it's because the cord fell out when she passed through Amy's doorway, since the cord was across the doorway.  Two, it is completely inappropriate for her to set conditions for providing care to Amy.  These things were upsetting Amy, and [MeanyCold] told Amy she would leave her in her chair if she didn't calm down. 

Amy tells me she was not having a panic attack or screaming at that moment, was just upset at how she was being treated.

This has been going on a long time, and there has been no change.  This has to stop.  It is damaging to Amy and it is completely inappropriate for [MeanyCold] to act resentful towards Amy for having to do her job, or to threaten not to provide care to her.  Elmwood is Amy's home.  [MeanyCold] is an employee at Elmwood.  Amy should not feel insecure about her care in her home.

Please let us know how this will be addressed.”
Also, a new issue, from last week, possibly Wednesday.  [MeanyCold] and Amy were in her room, having just showered her, she was still in her toilet chair.  Amy asked to go to the bathroom a second time after her shower.  [MeanyCold] said “you should have told me before, you better go this time”.    They went back in the bathroom, Amy went to the toilet, then told [MeanyCold] she was done.  [MeanyCold] told her she had to wait.  Amy was in a lot of pain, as she’d been in her upright toilet chair a long time and the strap was hurting her.  Amy’s leg hit [MeanyCold] and [MeanyCold] accused her of kicking her.  Obviously, this is not true.  Amy has muscle spasms, all the time.  Amy is not capable of kicking someone.

Please let us know how this situation is being addressed.

From: Allison K.
Sent: Tuesday, November 15, 2011 7:59 AM
To: New QSP; Residential Director; Dad; Step-mom; Auntie; Sister
Subject: Continuing care issues
Hi, [New QSP] and [Residential Director],

In last week’s meeting, it was mentioned that staff found us to be very rude in our communications, and then it was made somewhat clear that they were specifically talking about me.  I was shocked, since I am nothing but polite when in the house, and while my emails are direct and assertive, they are always professional.  Then it was said that I had yelled at [MeanyCold], which is  a shocking mischaracterization of our interactions.

I have had two conversations with [MeanyCold].  One night, Amy called me to tell me that she wasn’t allowed to watch TV at night and that [MeanyCold] said she could only make one phone call a night.  She was really worked up and somehow I ended up on the phone with [MeanyCold], who told me that she couldn’t speak for other staff, but that she didn’t mind helping Amy with phone and TV.  That was the extent of the call.  I previously emailed [Residential Director] about this on September 19, as 1) all staff should be helping Amy with phone and TV as Amy needs help and 2) this attitude is not ok – the idea that someone “doesn’t mind” helping her.  It is their job to provide Amy with support. 

The other conversation I had with [MeanyCold] was on October 15.  Amy was having a hard night.  She called me crying and asked that I call the house to alert [MeanyCold] she needed a white pill.  I called [MeanyCold] to tell her.  She said she had to call the nurse, I said that was fine, that it was just frustrating that Amy had to wait so long for pills she desperately needed in order to feel better.  I mentioned that some nights before, Amy had requested a pill and gone to bed without it.  [MeanyCold] told me this was not true, that the nurse had come and administered the pill after Amy had gone to bed.  [MeanyCold] told me how Amy was disrupting the house with her poor behavior and how she treats Amy like a queen (her words).  I explained to her that Amy’s crying and anxiety weren’t an act of aggression towards anyone, but rather part of her disability, which from our conversation, it was very clear [MeanyCold] did know recognize.   She said she was going to give Amy a pill without calling the nurse.

Every other time I have seem [MeanyCold] she has been quiet and sullen and we haven’t had any conversations other than basic greetings, me handing back clothes that aren’t Amy’s that I find in her room, her coming in to do Amy’s face wipe while I’m hanging with Amy.

Tonight, November 13, Amy called me that [MeanyCold] told [FriendlyBigMouth]  that I had called her a “bitch and a ni---r”.  I was obviously SHOCKED, and told Amy that that had never happened and that it seemed like maybe she had misheard something because it seemed so ridiculous and offensive, and obviously untrue.  Amy put [FriendlyBigMouth]  on the phone who confirmed that indeed, [MeanyCold] had said this about me.  This never happened.  I would NEVER say this to anyone, would never say anything rude to anyone at the house.  The fact that [MeanyCold] is saying it happened confirms a lot of things for me about how out of control this situation is. 

[FriendlyBigMouth]  told me that [MeanyCold] had painted a very negative picture of me, and was surprised to meet me and find I was nothing like what she had been told, and now suspects much of what she is told is false.   [FriendlyBigMouth]  has told me that she has an enjoyable time on the evenings she works with [LovingGrandma], but the nights the works with [MeanyCold] are unpleasant. 

Also, same day, Amy called to tell that [MeanyCold] would not let her take her shower early and she was really upset.  I told her that [MeanyCold] had done nothing wrong, and the not wanting to shower her early was not unreasonable.  Later, when I talked to [FriendlyBigMouth] , this situation was clarified – Amy told [FriendlyBigMouth]  she needed to go to the bathroom.  [FriendlyBigMouth]  said, hey I know it’s early, but why not kill two birds with one stone and take your shower now?  Amy said sure.  [FriendlyBigMouth]  asked [MeanyCold] for help putting Amy in her shower chair, and [MeanyCold] told her that she could not shower Amy at this time, adding that sometimes when Amy takes her shower early in the day, that then she lies about not having gotten a shower (Amy does not lie, and staff keep claiming to never have called Amy a liar, and yet…)

Additionally on Sunday, [MeanyCold] told Amy that she is evil.  Yes, she said “you are evil”.   She again told Amy she must clock out by ten and thus can’t assist Amy with television watching past ten pm. 

Saturday night, [MeanyCold] asked Amy if [FriendlyBigMouth]  had put her on the toilet before she went home.   Amy said no, and [MeanyCold] said something like “this is the last time I’m gonna do it”. 

The other day, Friday I believe, [MeanyCold] brought up Monday’s meeting and told Amy she didn’t attend because she had something personal to do, but that she wanted to bring somethings up, such as the fact that Amy doesn’t use her horn.  This was inappropriate.  No one should be chastising Amy in her home. 

Also on Friday, Amy was talking to [FriendlyBigMouth] , and [MeanyCold] was listening.  Then [MeanyCold] told Amy that she was lying when she was talking to [FriendlyBigMouth] .  [MeanyCold] DOES call Amy a liar, and routinely. 

Recently (possibly Oct 23), Amy and [FriendlyBigMouth]  told me that [MeanyCold] told [FriendlyBigMouth]  that Amy had told another staff member that [FriendlyBigMouth]  had hit her.  [FriendlyBigMouth]  came to Amy with this, as she was obviously upset over such an accusation.  [FriendlyBigMouth]  never hit Amy.  Amy never told anyone [FriendlyBigMouth]  hit her.  We also spoke with Amy privately give her the opportunity to tell us if such a thing had happened.  It never happened. 

None of this is anything new, and it never stops. 

Amy is not a liar.  Amy does not lie.  I felt like we got at this in the meeting and that it was clear -- Amy should never be accused of lying or of not telling the truth. 

Amy also asked that I clarify, she at no time has called [Residential Director] a bitch.  She isn’t sure if she’s called [former House Head/QSP] a bitch, but she knows she has never called [Residential Director] a bitch.  Additionally, Amy is entitled to say whatever she wants in her home.  It is the not the job of [Agency] staff to monitor Amy’s verbalizations and reprimand her for them. 

I really concerned that what’s going to come out of this email is that [FriendlyBigMouth]  gets in trouble for sharing with us, and I ask you not to have that happen.  [FriendlyBigMouth]  is the only window into what is going on in that house.  Something bad is happening, and [MeanyCold] is not being honest.  I feel very uncomfortable with her continuing to provide care to Amy given her obvious willingness to lie and apparent distaste for Amy and our family.

Sorry to send such a heavy email, but its apparent me that the situation being represented at Monday’s meeting remained, partly at least, hidden from view and inaccurate.  I went into that meeting very concerned about the quality of care and attitude towards my sister from two staff members in general, and after consideration I am still very concerned.  I very much appreciate that [former QSP] is no longer in contact with Amy, but there is still a problem. [MeanyCold] is verbally and emotionally abusing Amy, and she’s lying to staff to make more trouble.  This is not ok.  It is apparent she does not wish to provide care to Amy. 

Often, when a care taker is disrespectful or cold toward a person with greater disability, it goes unnoticed, as the person does not report it, or is unable to report it.  Thankfully, Amy is able to report her poor treatment.  Rather than Amy being looked at a trouble maker, I would suggest that this is actually a great moment to examine the care-mentality of employees and examine whether they really should be trusted to care for vulnerable people.  
 Amy's new QSP finally repsonded to emails, suggesting another worthless meeting, where they will no doubt tell us that 1) none of this ever happened, 2) that Amy is is just misunderstanding, 3) that Amy is the problem, not them, 4) that no one has ever called Amy is a liar, and if she says that they did, then she's LYING, and 5)  that maybe we just have too high of expectations and that not everyone (referring to Meany Cold) can be as sweet and warm as EVERY OTHER CARETAKER IN THE HOME:
Amy annual IP is approaching in January 2012, I will like to set a date for Amy annual meeting. This meeting will talk about Amy goals and progress in each section. We will also discuss any concerns or issues anyone may have. This meeting is all about Amy and she can talk to us as a Team about living at Elmwood now goals she will like to work on and etc.  Please send me an email for a date in January so we all can meet, if we can meet before the 12th that would be great. Please confirm.

[New QSP]
My response:
Walker and I live three hours away, and we and Annie all have full-time jobs with limited days off.   We’d like to make sure that if and when we have a meeting again that it is productive

I propose that before setting a meeting date or meeting that [organization] staff meet and identify any changes they’d like to make to Amy’s current IP.  Please share Amy’s current IP, proposed changes, and intent of IP’s with Amy and with us.  We will then work with Amy to develop our proposed changes.  We can communicate back and forth until we have something hashed out, and then we can set a time to meet and talk about this plan, if needed. 

When we do meet, we ask that direct staff not be present.  Amy is reluctant to speak openly in the presence of the people she relies upon for her day to day care. 

The issues raised in past emails need to be addressed separately, and not confused with Amy’s IP meeting. 

Thank you, [New QSP] ,
 And a summary of the other responses I received from her today:
  • On coffee and bed baths, after 40 days: "I will inform staff of Amy’s request thank you!!!"
  • On Amy's glasses, which have been broken for A MONTH.  "I talked with Wheaton Eye Clinic concerning Amy’s broken frames. They informed me that she(we or I) can come in between the hours of 8am-3pm and there department will be able to look at them and repair the glasses. However there will be a fee for new frames billing up to $200.00 depending on if she needs new frames or can they can place her old len in a new frame.  Please let me know what you would like for me to do as the payment will be do upon services!!!"  Response: "Amy is her own guardian.  She can either pay the 200 dollars herself, or if she doesn't have the funds, she should be taken to somewhere that does accept her insurance and will provide frames and lenses.  I don't know the details -- either my mom or [organization] had handled this in the past -- but I'm pretty sure she only goes to the doctor at the wheaton eye clinic and that she has gotten her glasses for free in the past from somewhere that did accept her insurance, as her and my mother had no income."
  • On New Years Eve: "I am unsure of how to respond to this email as the staff at the house is to clock out by 10pm. I will inform my boss of your wishes for New Year’s Eve and inform you on the arrangements we have discussed asap." My response: "When we've raised this issue in the past -- that Amy was under the impression from conversation with some staff members that she needs to be home in time for them to clock out by ten, and that they can't assist her after ten -- and been told again and again that this is not the case, that if Amy needs care after ten pm then staff clock back in, and that Amy will be cared for at the house whenever she needs care." 
  • On Amy's medical bills, which they keep giving to me. I have not finacial responsbility for Amy, so this is odd to me: "I have received the bills for Amy and will go over them with [Residential Director] asap! I will inform you on what the family or [organization] is to do with the bills."
  • No response to any of the abuse Amy is experiencing at the hands of MeanyCold
  • No response on range of motion 

At this point, I am also forwarding all messages to the vice president of the agency.  I've also filed another complaint with the Office of the Inspector General in the Department of Human Services.   

If it seems like I'm losing my mind, it is because I am.  I am exhausted.  I want to spend my life improving Amy's life in REAL WAYS, not dealing with constant bullshit.  


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