That other email from this week.

You know, this one, asking about what kind of disability sensitivity training staff receive?  It was replied to, inline, and opted to skip over many of the key issues:

Hi, [NewQ],

We had a problem yesterday (Sunday) morning, but both of the numbers I have for you didn't work.  The first was not in service and the second  was a wrong number, so I then called [Residential Director].  Can you provide me your correct phone numbers?

The numbers are to the other houses that I work at. I am not there on the weekends. There is an on call QSP on the weekends that take all concerns, questions or issues that arrive.

NUMBER is the number to [OtherHouse]. I am usually in and out of the houses and not stationed in one specific location. This was discussed in the meeting. IF Amy has an issue while at the house and cannot reach me at the houses of the numbers above then I am at a doctor’s appointment or a meeting. Now that I am the QSP for [Amy's House] as well(Not Just Amy) I will make more frequent visits to the house numerous times a week!!! 

Staff got Amy up between 6 and 6:45 am on Saturday.  I told her to tell them she'd like to sleep till eight on Sunday, that if she speaks up there won't be a problem.  She was very reluctant, concerned she wouldn't be allowed, and worried she wouldn't get to have breakfast if she slept till 8.  I assured her that this is her house, that she'll have breakfast when she gets up, regardless of the time.  Amy called me back to tell me she spoke up and asked to get up later, and staff told her that they'd need to get her up at six to have breakfast, but could then put her back to bed.  This makes no sense.   I contacted [Residential Director]n regarding this and she was going to contact staff.  Sunday, Amy got up at 8 (hooray!) and a staff member told her,"There is a reason I get you up at six".  That comment was unnecessary and irrelevant, and made Amy feel uncomfortable.  A staff member had mentioned this to me as well -- that she wanted to get Amy up early because it takes her a while to get Amy ready, but what does this matter when there are no set plans for the day?

The other issue this weekend, Amy asked to have hot tea on Saturday at about 10:15 am and was told she couldn't have tea till the evening.  This is not the case.  Amy can have tea any time she wants.  [Residential Director] handled this.  Later in the day, after [Residential Director] had handled the issue, a staff member told Amy that she couldn't have any more tea.  Again, that is not the case.  Amy can have tea any time she wants.   

I will discuss this in a meeting with all the staff there at  [Amy's House] concerning clients rights and choices

Amy hasn't had any significant problems with caregivers since the changeover, but a mentality of care persists, and is continually the root of these problems.  The organization's mission is to "empower individuals with disabilities, mental illness and special needs to achieve independence and community inclusion", and [Amy's House] is a "24-hour home setting for individuals with developmental disabilities or behavioral health care concerns who need to develop independent living skills", but what goes on in the house is more akin to a nursing home situation.

There are four big issues that we need to overcome at [Amy's House].  

1) Amy is in charge of Amy.  If Amy asks for something, she can have it.  It does not need to be checked with her Q or her family.  This needs to be understood by all staff about all issues.  Amy can take her braces off any time, Amy does not need to sleep on a pee pad, Amy can have tea or coffee or food or juice, any time she wants. Amy can shower when she wants, Amy can stay up till whatever time she wants -- in or out of her chair, Amy can choose what time to get up.  When Amy asks for something, she is not asking for permission (she doesn’t need permission) but for assistance with the task in question.

This will be discussed with that staff in my training meeting pertaining to care and choices

2) Care conforms to clients' needs; clients' needs do not conform to care or convenience.  The clients are the customers.  Staff work for the clients to facilitate full and independent lives.  Amy can have a bath if she wants one before bed, and she can have breakfast whenever she gets up.   

3) Efficiency is not the goal; engagement and involvement are the goal.  In the IP meeting, we talked about how Amy's goal of going to the bank monthly had devolved from her going in to the bank to handle the transaction to herself to them going through the drive through.  This is an example of how engagement and involvement take a backseat to efficiency.

This was implanted into Amy’s goals and objectives(as once stated before) Amy should communicate with the QSP if she is not going into the bank to do this. I will handle the communication with my staff pertaining to the situations. But is Amy does not communicate this with me at the time of occurrence then I will not know until I receive emails from the family. Amy can feel free to have staff at the group home to call or assist her into calling numbers that I provided and feel free to leave a message.

4) Staff should be kind and respectful at all times.    Amy routinely has interactions that are disrespectful, where she is treated like a child, where staff members act as though they are disciplining her (for example, by demanding she behave in a certain way in order to be provided her care) or where a person providing her care is generally cold.  Today, Amy told a staff member that she was not far enough back in her chair.  The staff member told her “let me do my job”.  After they had spent some time trying to position her but it still wasn’t right, the staff member told her “I’m not going to be here five hours”.  This is inappropriate and unacceptable.

At all times, staff should be treating residents respectfully, recognizing their full capacity, responding to their requests, and acknowledging that they are in charge.  Residents should be encouraged to and assisted in participating in making menus, grocery shopping, making dinner, doing laundry, putting clothes away.

In the interest of my sister, I would like to know what kind of training in disability sensitivity the staff has received, and what they know about each clients disability.  I’m sure the Illinois Council on Developmental Disabilities, Life My Way, or the Arc, all Illinois organizations, would have great resources for professional development of individuals working with the disabled, and I’d be happy to reach out them to assist in this.

I hope that everyone working with Amy understands how truly minor her cognitive disability is, in contrast to her physical disability (including legal blindness).

On the glasses, and really about anything -- Amy likes to know, and should know, the details -- the whys and hows and next steps and backstory, and should always be told any details known about situations relating to her. It is important to Amy (just as it is anyone) to have full knowledge of what is going on in her life and why.  It makes her feel more in control of a life she doesn't exercise a ton of control over, and allows her to make plans and look forward to things.   She asked me to find out what was up with her glasses, and I've passed this information on to her.  I have no doubt that the 6-8 weeks for Medicaid was covered in the doctors visit, but for whatever reason she wanted to know more or didn't catch it at the time.  

I talk with Amy weekly concerning any issues that she would like to express with me or to me. Amy can inform TC as well as  [Amy's House] when she needs me. Amy was aware of the glasses for she was at the appointment with me when I went. I will inform Amy when the glasses arrive and will take her with me to get them fixes and tighten to her face.

It's fine to tell Amy things more than once, and in fact, she'll appreciate it.  It is probably good practice to go over doctors visits or meetings afterward with Amy so she has a chance to get it all.  Given that she can't take notes, she relies on her memory and appreciates being told everything in a way that allows her to remember it.  Other examples: if something is cancelled, people should tell her as soon as they know and explain why.  If she needs to get up early, or get a shower at a different time, explain why (staff convenience is not a reason).

Amy says staff have been moving her around, but doesn’t know if they are doing range of motion.  Please ask staff to tell her when they are doing range of motion and tell her what each stretch is (it is all on the printouts the doctor provided to me and I sent to you).  This way Amy will know she’s done all her exercises and that she’s done them twice each day.  I’ll go over all the different exercises and what they do with her so that she will recognize them by name.    

The nurse for  [Amy's House] and I will train the staff on correct range of motion exercising. For there has been staff changes but I assure you that the Trainings will take effect asap!!!

[NewQ], you are awesome.  Thank you for handling all the stuff below.  We are so thankful to have you as Amy's Q.

Thank you!!!

I will send you out a copy of Amy’s IP meeting and let me know if there is something that needs to be added or missed!!!

I meet with Amy today at 1:00pm to discuss concerns or questions with her as well as go over assessments etc with her!

Response:  

Hi, [New Q], 

Amy does ask staff to contact you on occasion.  For many days she asked staff to contact you regarding her neurology appointment to confirm that a ride was scheduled and to find out what time the appointment is.   

Amy continues to be fearful of asking staff to contact you when she is having an issue because of the backlash she has faced in the past and continues to face when she seeks resolution to a care situation.   

Again, as I mentioned in my below email, mentality of care is continually the root of these problems. In the interest of my sister, I would like to know what kind of training in disability sensitivity the staff has received, and what they know about each clients disability.  I’m sure the Illinois Council on Developmental Disabilities, Life My Way, or the Arc, all Illinois organizations, would have great resources for professional development of individuals working with the disabled, and I’d be happy to reach out them to assist in this.   

Best,
Allison

And a reply from the agency director:

I am suggesting that [NewQ], arranges a meeting as soon as possible with the family so we can resolve whatever issues are arising.  We cannot manage staff problems over email so lets see if we can meet next week .  [NewQ], please also invite Day One to the meeting.  Is next Friday an option to meet after 11:00 a.m. 

A reply from Sister Two, to this, and the OIG thing in the past email:

Thank you for looking into the matter, [Agency Director], I appreciate it.

Regarding a meeting next week.  My schedule is open.  I spoke with Allison.  As you know, she lives several hours away.  She is able to teleconference any day other than Friday, but can't skip work to drive in for another meeting.

As we plan for this meeting, can we please plan to not include staff?  Amy won't speak openly about how she feels in front of them.

Thank you, 

[Sister Two]

New Q says:

As I stated to [Agency Director], I have a meeting Friday morning at 10:00am. But per [SisterTwo] Allison cannot do Friday either!!! 

If the family gives me a date I will adjust my schedule to accommodate their schedule. I feel that the staff should be there so they are more aware of the needs/suggestion/concerns from the family as for they are the people that works directly with Amy on an everyday basis. The last meeting we held in November 2011 as well as January 2012, staff were not able to come per the family’s request(I didn’t get that from Amy)

SisterTwo says:

Thursday works great.  The later we can do it the better, that way I can visit with Amy when she finishes with work for the day.  But yes, let's plan on that day.

Also, regarding staff.  They were present at the meeting in November. 

Annie 

I get how boring this stuff might be to anyone who actually reads this, but my world is in a tailspin, and everyone I interact with is completely insane and has not respect for my sister, or any sense that they SHOULD respect her and this is my space to let it out and share it with someone, anyone, before it explodes.