Crazy Train to Independence City

We just returned from a life-changing three days.


I don’t know where to start.  I haven’t updated in a while, out of frustration.  I’ll go chronologically, but that may mean you don’t get the more positive stuff here in this post.  


So, last Monday, we had our BIG MEETING.  We got there and were surprised to see two staff members also attending.  In the past, my mom had asked that staff not attend as it turned into a she said, she said situation, and not focusing on the larger issues.  


These are the talking points I prepared for out meetings.  I was urged to skip those that are crossed out, as it seemed they’d been addressed already without being overt.  I obliged, and I regret this decision.

Amy should be involved in her care, and independence and involvement should be promoted.


Though Amy is physically disabled, she is NOT significantly mentally disabled.  She should be physically supported in being engaged and involved in her life.  It if the job of the house to support her in her day to day life, and stimulate her mentally.  


Amy needs to be treated as adult, respected, and listened to. Amy know what she is talking about, and needs people to listen to her and respect her.
Amy needs to work on how she responds, but generally, if there was more respect it would improve Amy’s responses.

1. Clothes selection.  

1. Rather than just dressing Amy in whatever, Amy should be given choices about what to wear, such as shown four weather appropriate shirts and asked if she’s like to wear one of these.  Whoever is getting her ready should assit her in her choices, such as suggesting pants that would look good with the shirt.    It  might be a good idea to do this the night before
2. Amy should not be dressed in sweat pants for wear outside the home unless she requests to be dressed in sweat pants

2. Food selection

1. Amy would like to be asked what she would like for lunch, both what food she 1) generally likes and doesn’t like to have packed in her lunch and would like to have added or removed from her shopping list, and 2) wants packed each nigh for the next day
2. Amy would like to have input on what she has for dinner

3. Social Time

1. Amy is going to start scheduling visits to friends homes and other activities, separate from the people she lives with.  
2. When she is going somewhere, outside of group home activities, where assistance will be provided to her and  it is within the PACE zone, she will take PACE
3. Other times she will require a ride or facilitation, such as going to the movies or out to dinner with a friends.  

4. Independent Living Activities

1. Amy wants to participate in grocery shopping
2. When Amy needs something, she wants to shop for it herself and pay for it herself
3. Amy would like to participate in household chores such as laundry and meal preparation
4. Amy needs to be able to get in and out of her room, whether this means getting a door opener, or a door that swings both ways.  Amy is routinely trapped in her room.

5. Doctors Appointments

1. Enough time to accommodate having lunch needs to be built into her future doctors visits

6. Sleep and Bedtime

1. If Amy stays up too late to take a bath or shower at night, she is to be given one in the morning, no exceptions
2. Once Amy is in bed, she can stay up as late as she wants making phone calls or watching TV.  She will need assistance from staff.  Staff should provide assistance.  *I was informed that staff aren’t paid after ten, but that they will  help her.  Staff don’t get paid?  Sounds like a management issue causing this care issue.  
3. Amy should not sleep on top of pee-pads as they cause her to sweat
4. Monitor must be turned on after Amy goes to bed, but not before.  Amy was recently left in bed to pee on self.  She called for help for an extended time, but no help came.  When staff did come, they found her laying in urine and asked why she had not called.  *Staff claim Amy called multiple times that night, and they came multiple times that night, blah, blah, blah, issue muddied.  Amy says she called for help and they didn’t come.  Frankly, I don’t care how many times she’s already called.  They didn’t come some of the time.  

7.  Telephone

1. Amy can make as many phone calls as she wants, at any hour she wants
2. Amy should have her phone on her at all times.  

• Amy’s phone should be on her tray in the morning  *Staff says “but she never asks for it in the morning!”.  I say, okaay, that’s not any part of this, from her on out, she should have her phone.
• The phone can be off or on vibrate and in her bag at work, but she should have it with her so that she has it if she needs it.
• When Amy is out of the house, her phone should always be velcroed on her tray unless the activity prohibits it.  It is important to be able to reach Amy on her phone when she is for instance meeting us at a restaurant or a doctors visit.  Also, having her phone would allow to reach out for help if something bad ever happened.  

8.  TV

1. Amy can watch as much TV as she wants, as late as she wants.  

9.  Toilet

1. Amy can use the toilet, any time she wants regardless if she went 20 minutes ago, or if she said no when someone asked her earlier.  She should not be met with challenges, begrudging responses, or sighs of inconvieniece.  
2. People should not talk to Amy about unrelated things when she is trying to use the restroom.  They should shut the door and step outside.  

10.  Physical Care

1. Teeth should be brushed twice a day, for two minutes.  The new tooth brush pulses every 30 seconds.  30 sec on outside top, 30 sec on inside top, 30 sec on outside bottom, 30 sec on inside bottom
2. Wash face before bed and in morning.  Can be washed in shower.
3. Range of motion exercises, to be performed twice a day.  Once in morning and once in afternoon or evening.  Have 14 exercise instructions provided by doctor.
4. Switching from all-in-one to separate shampoo and conditioner

11.  Take as needed medications.

1. Amy needs to be given medications swiftly after requesting them.  Not receiving quickly causes her state to deteriorate.  
2. Needs to be screened on the Self Administration of Medication Assessment tool, so she'd be able to self administer.  This would fall under rule 116 that if Amy has the cognitive ability to understand the medication and her needs that she be allowed to self-administer even if she needs physical assistance to access the medication, and under rule 119, that allow staff to supervise her in self-administration, even if she needs physical assistance.  Not getting the meds when she needs them is not a solution -- both the antacid and the white pill are things she needs to take quickly after the onset of symptoms to provide relief and prevent worsening symptoms.  These meds are not optional, and need to be delivered swiftly after they are requested.  *This has happened finally, they just didn’t tell me about it.

12.  Attitude toward AAmy.

1. What training do people get in disability, respect, and promoting independent living?
2. Staff should not discuss Amy in front of Amy unless they are speaking TO Amy.  Talking about a person to someone else IN FRONT OF that person is uncomfortable and disrespectful, and worrying that her caretakers are disgruntled produces anxiety in Amy.
3. Embarrassing/negative assertions need to stop.
4. It is the job of staff to provide care to Amy, not at their convenience.  [MeanyCold] once told me, that she couldn’t speak for other staff, but that she didn’t mind helping Amy with her phone or TV. This is precisely the issue. Caring for Amy isn’t a matter of whether or not staff “mind.” It is their job to provide Amy with support.  Amy lives in terror of inconveniencing the people whose job it is to take care of her due to the negative/irritated/inconvenienced responses she has received over the last two years.
5. Do not threaten Amy:  [MeanyCold] and [FriendlyBigMouth] (both staff) told Amy whenever she “acts out” they will call [Residential Director] and [House Head] to report it.  Previously, I did talk to [MeanyCold] about Amy’s anxiety attacks, in a phone conversation she initiated, and it was very evident that she did not understand that this is part of Amy’s disability and condition
6. Do not accuse Amy of lying.  Ever.
7. Staff cannot punish Amy or restrict her privileges
8. Amy does not like that staff won’t take her word on things and need to verify with her family.  If they require family verification, staff should be less  dismissive of Amy and more polite in requesting verification.  (Example: Saturday night, we were taking Amy out to eat, on phone staff said Amy was “refusing to eat”, when in fact she had told staff that she was going on with family to eat at 6, and thus wasn’t eating with the house).  
9. House environment needs to change.  Hostile, staff clearly inconvenienced by doing job.  “I’m just here to do a job” one staff member told Amy.   Being nice, warm, and engaging  is part of the job.  
10. Amy needs a phone number for her [House Head], the person she is directed to share any complaints or needs with, so she can contact them directly.  She shouldn’t have to contact her family to ask that they contact the person.   *Result: a resounding NO.  Amy can not have the phone number of the person who is responsible for managing her care.  When Amy has a complaint or concern, she is to let staff know that she needs to talk to [House Head].  I said this didn’t make any sense -- her problem is with STAFF.  They suggested that Amy contact me, to have me contact [House Head].  Circular.  

One good thing came out of the meeting.  Amy has new QSP.  It was announced while the monster who was her past QSP, formerly referred to here as her House Head, sat rolling her eyes.  So Old House Head, good riddance.  You will no longer be inconvenienced by Amy’s care needs and concerns/your job.  


But honestly, aside from that, the meeting was joke.  I went though my hour long list of things I’d worked on with Amy, and they pretended they were listening, while occasionally pointing to specific times they’d done their job to show that they always do their job (does not compute), or trying to explain away individual instances of failure, and acting like this absolved them of all failures.  


Then they told us they have never called Amy a liar.  They they told us Amy was a liar and “playing” us.  They told she asks for help at night just to get attention.  They told me that the staff find me rude and nasty.  They asked up to pay for repairs of equipment that would make their jobs easier, even though we provided them with alternate equipment.  


They told Amy that the representative from the Office of the Inspector General told them what Amy said about them (uhhhh, is this not a threat?  telling someone that they have NO ONE to turn to) and that they’d heard from staff that Amy has called [House Head] and [Residential Director] a bitch.  Amy’s not sure if she’s called [House Head] a bitch, and to be fair -- she’s a bitch, but she can say with certainty she’s never called [Residential Director] a bitch.


Among other things, we told them, again, that Amy does not lie.  We explained that cognitively Amy cannot lie; they told us that we might not think she can lie because we are her family, but that she can.  I told them Amy is not playing us.  I told them Amy is not “attention seeking” -- as a vulnerable and dependant person, she is seeking to feel secure about her care.  


Amy’s biggest problem is with the house manager, [MeanyCold].  She’s great, you are wrong and a liar, was essentially the response.


Mom was dead on that staff shouldn’t be at the meetings.  Amy spoke up for herself, but she was totally flustered, backed off all issues, saying sure, maybe I misunderstood, sure, maybe it never happened.  She tried to lay out issues, and then would immediately aim to add something good about the staff present.  Let’s remember, we were having this meeting because AMY IS SCARED OF HER STAFF.  


Everyone left the meeting pretending that things would be great from here out on, that some problems would be solved, and that the rest were a misunderstading.  


Amy felt good about the meeting, and I would never take that away from her.  I told her it was a good meeting (I am so rarely two-faced to her on this blog and tell her about everything I post. She’s going to kill me when she gets set up with a computer in a few months and reads this. Yep, the meeting sucked, sis).  


…..


I got a call from Amy on Thursday, then on Friday, then on Saturday.


Fireworks and explosions.  I’d explain, but instead, I’ll just share the email I sent on Tuesday to [New QSP] and [Residential Director].  It says it all.   

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 Joan 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 Shee-na 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.  

Aaaand response, from [Residential Director]:

Allison, I have read your e-mail and I will follow up with the concerns that have been shared in this e-mail.

I am asking that you contact the QSP for Amy which is [New QSP] in the future and not question staff about what Amy has said, or what another staff person has said.  I believe this will eliminate confusion; staff will also be instructed to discuss concerns with  the QSP as well.

And my response:

Hi, [Residential Director],

This email was to [New QSP] .  I did not question staff.

I look forward to the issues in my email being addressed.

.....


So, right now, even days later, just writing this out, I am so inflamed that I can’t even keep going right now.  I’ll tell you about the last three days soon.  


Also, yep, I started nicknaming staff.  It’s a little juvenile, but here’s the thing: I don’t call them this in life, because why bother, they have names.  And what should I do here, call them Staff Member A and Staff Member B.  Also, [MeanyCold]?  She’s mean.  And cold.