Monday, January 7, 2013

2013 Individual Plan

In case you weren't clear, nothing ever changes at Amy's house.  As in, she had broken glasses last January and she still has broken glasses this January, and omg, I know, I'm wildly ashamed I haven't dealt with it myself, but I have dealt with 100 other things, and I've kept ASKING about all these things, and because DAMMIT, I still don't have the insurance information.

Every year, they make a "individual plan" -- a list of goals and steps towards independence to be taken in the coming year.  Just like last year, we have less than a weeks notice about a government required meeting.  

Email received on Saturday:
"It is time for Amy’s annual planning meeting please let me know when you are available to meet, this is short notice as it is due by 1/13/2013

Would like to know your availability on Friday 1/11/2013 or Monday 1/14/2013.

Thank you for responding with the time that you are available on either one of the dates mentioned above.

[Community Living Director]"
Response sent today (block quotes f's up the formatting so whatever, no block quotes).  Oh, and I sent this to the boss boss, too:
"Hi, [Community Living Coordinator],
Unfortunately, family are unavailable on the 11th and 14th.  Amy’s primary family lives in [downstate city] and [downstate in neighboring state], and all of her family members have full-time jobs that require notice to take time off.   

This last minute notice happened last year, also.  This is disconcerting and unprofessional -- the short notice for a required meeting, missing the doctors visit, the lapsed rx, the routine failure to schedule caregiver willing/able to provide care to Amy resulting in her being denied using the toilet.  Is there not a calendar kept of doctors appointments and rx expirations?  

We have a number of outstanding issues awaiting resolution, several from Amy’s 2012 IP.  

  1. Glasses, urgent
  2. Dermatologist
  3. [Dr. Body] / [Prescription Drug]
  4. Neurologist
  5. Physical Therapy, Range of Motion, Motomed
  6. Swimming Lessons
  7. Door opener
  8. IUD
  9. Insurance information
  10. [Prescription Drug]

New  issues

  1. Neck abscess
  2. Bleach in mouth
  3. Seat belt on wheelchair
  4. Personal Allowance
  5. Toileting
  6. Dentist

IP goals
  1. Amy will work on her physical health, including
    1. Starting swimming lessons
    2. Start working with a physical therapist to work towards a standing transfer
    3. Continue standing daily
    4. Range of motion 2x per day, as prescribed by [Dr. Body]
    5. Use motomed daily
    6. Track physical activity to provide to doctor and track physical progress
  2. Amy will go to the bank once per month to deposit her pay check and check her balance.   She will physically go in to the bank and handle the transaction with as little assistance as possible.  
  3. When doing her personal shopping, Amy will handle checkout with as little assistance as possible
  4. When eating out, Amy should order her food and pay for meal with as little assistance as possible
  5. Amy will choose her clothes every day.  It may be easiest to do this in the evening.  
  6. Amy will help with her laundry.  
  7. Amy will help with cooking dinner at least one night a week.  
  8. Amy will go grocery shopping once a month.
  9. Amy will communicate issues directly with her Q.  She will need a phone number to contact her Q, or at least leave message.  
  10. Amy would like to start volunteering in the community, at least 2x per month.  
  11. Amy would like to go on community outings and social activities 3x per month (not including bowling and whole house activities)

Glasses, urgent
[Awesome, effective, and run off by the agency] had recently taken Amy for her eye exam with [Dr. Eyes] in Wheaton and they were going to go get her new glasses soon at whatever optometrist would accept her insurance or glasses.  Can this be handled ASAP, hopefully in the next two weeks?

Amy's glasses broke in November 2011.  [Nice but ineffective] took her to get new glasses in spring 2012, but she never received them.  Thirteen months later, Amy is still wearing old glasses with an outdated RX and broken nose pads that mark and hurt her nose.  I asked [Nice but ineffective] repeatedly about this -- she said she contacted the store and they were not ready yet.  In the fall, [Nice but ineffective] said the place they went to get the glasses (I don't know where) said they couldn't give Amy glasses since she could only get one pair a year.  As I told [Nice but ineffective], Amy has not gotten new glasses in several years.  It is bewildering that she is STILL without her glasses over a year later.  Important Detail: her glasses rx needs to come from  [Dr. Eyes] in Wheaton.  Other eye doctors cannot accurately test Amy's eyes.  

Amy is long overdue to visit the dermatologist for a skin inspection of her moles. Originally Shee-na was going to take her to the dermatologist in September 2011 but that never happened.  Amy has several moles (at least a half dozen) that look like early melanoma, which runs in Amy's family, and is a threat to her life, as I told [Nice but ineffective] in a 9/12/12 email.    [Nice but ineffective] took her to a dermatologist on 10/23/12, but they did not accept her insurance, something that should have been discovered beforehand.  Please arrange for Amy to see a dermatologist for a skin check, followed by removal of dangerous moles.  Please let me know the date and time of her visit so I may attend by phone.

[Dr. Body] / [Prescription Drug]
Amy was to visit [Dr. Body] for her prescribed [Prescription Drug] injections in fall 2011, but that did not happen.  We last visited [Dr. Body] on 10/15/12 with [Nice but ineffective] for Amy’s [Prescription Drug] assessment.  She was to be brought back for her prescribed [Prescription Drug] injections to be administered, but that has not yet happened.  When we left [Dr. Body], I was under the impression she would be receiving the shots in November.  Please arrange for Amy to receive her shots as soon as possible.  This is medically necessary.  

Amy should be seeing a neurologist every six months.  She last went on 8/29/11.  I have sent numerous emails regarding this.  On 10/10/12, [Nice but ineffective] emailed that she had scheduled Amy for an appointment with a new dermatologist at CDH in DuPage County for 12/5/12 at 10:30 AM, however, I don’t think Amy attended this appointment as she was at the eye doctor with [Awesome, effective, and run off by the agency] that day.  Please arrange for Amy to visit the neurologist soon, and for her to visit him at the frequency determined by the doctor.  

Physical Therapy
Amy got a motomed in December 2011 (as her [Dr. Body] advised would be beneficial) and since then we have been asking that Amy start using it daily, and for her to work with a physical therapist.  This was part of Amy’s annual plan for 2012, but there has been no action.  Amy has still never used the bike, and staff removed it from her room despite being asked not to.  Please arrange for Amy to begin seeing a physical therapist regularly and to start using her motomed daily.

Amy would like to work with a physical therapist to:
  • Develop a motomed exercise plan
  • Evaluate her stander use and make a plan for increasing her strength
  • Work towards a standing transfer

Range of motion
Amy is still not receiving all of her prescribed daily range of motion exercises.  I emailed the directions for the prescribed exercises on 1/9/2012.  Please arrange for staff to do Amy’s prescribed range of motion exercises.  

Documenting bike use, stander use, PT, and range of motion
[Dr. Body] suggested that we begin documentation Amy’s motomed use, stander use, PT, and range of motion, and provide it to him.  

I will create spreadsheet that can be used.  Of course, this will likely need to be modified once we’ve talked to a PT.  I will put copies of this in a binder in Amy’s backpack and will retrieve the past copies when I see her to send on to the doctor.  

Swimming Lessons
Amy requested to start swimming lessons/water therapy at Keeler in her 2012 IP.  On 3/1/12 Jonetha emailed that “Amy will be enrolled with FVSR directly.”  She has not yet had any lessons.  Please arrange for Amy to start having regular swimming lessons/therapy.  As I have told her Q’s, I am always happy to pay for Amy to attend FVSR activities or have experiences like this.  

Door Opener
Amy is still unable to get in and out of her room.  On a regular basis Amy is in her room with the door closed and cannot get ahold of staff when she needs help.  She calls the house when this happens, but sometimes no one answers.  We were told that a door opener would be installed, or that some other solution would be found.  Please provide either a door opener or pager button for Amy.  

Amy requested an IUD.  It was discussed in her 2012 IP planning meeting and added to her IP.  Please arrange for Amy to visit the gynecologist to take steps towards this.

Insurance information
In our March meeting Annie requested Amy’s insurance information, but it was never received.  I emailed about it again about mid-April, and on 5/1/12, but it was never received by Annie or I.  

[Prescription Drug]
I wanted to confirm that Amy is currently taken [Prescription Drug], as prescribed.  I email [Nice but ineffective] on 10/22/12 regarding this:  “Hi, [Nice but ineffective]. [Dr. Body]'s office called.  [Insurance] will not approve her [Prescription Drug] Rx.  [Dr. Body]'s nurse, Joanne, looked in to it, and the reason it won't go through is because the pharmacy keeps trying to fill the rx with a softgell Prescription Drug], and [Insurance] only approves the capsule form.  Could you call the pharmacy and let them know to run the rx as 100mg capsule -- not softgel. Then it should go through, no problem.  It was great having you at Amy's [Dr. Body] appointment.  Best, Allison”

Neck abscess
We are so thankful that [Awesome, effective, and run off by the agency] took Amy to a physician so quickly.   Amy tells me that the doctor said she would need to go to a surgeon to have this fixed long term.  There has been a recurring much smaller cyst there for years, so I think this is a very good idea.  Please let me know when it is scheduled for so that a family member can be available to visit her that day or the next.  

Bleach in mouth
Amy told me about an incident where staff accidently sprayed bleach in her mouth.  Her personal spray bottle normally used to defuzz her hair had bleach in it.  This is disconcerting.  Staff handled the aftermath well and called poison control, but I’m concerned how this happened in the first place.  Amy explains that staff found her personal spray bottle in the kitchen (rather than with her personal items), then sprayed her in the mouth while brushing her teeth.  How did bleach end up in her personal spray bottle?  Why was she being sprayed in the mouth, regardless of what was in the bottle?  

Seat belt on wheelchair
Amy’s lapbelt buckle broke in October.  The wheelchair people came to fix it and gave her a temporary lapbelt awaiting a new buckle.  The current belt is small and as a result is position over her legs rather than her hips to make it fit.  Also, the wheelchair people were to give her new adductors and laterals.  They installed what look like used mismatched laterals that routinely come off as they are not secured.  We await the new aductors and laterals.  Also, Amy’s tray broke in late December and we await a new tray.   

Personal Allowance
How is Amy’s personal allowance tracked?  How much does she currently have in personal allowance and what does she spend it on?  We have recently given her a debit card and she is working on learning to manage her money, so we would like this information.  

I’ve emailed twice recently about failure of staff to toilet Amy.  The first instance occurred on 12/26/12; I emailed on 12/27/12.  
Melt down last night.  Amy came home around five.  To their credit, the staff on duty ([Staff] and [Staff]) started calling around pretty quickly in order to resolve who could come in to give Amy a shower since neither of them could.  They found someone to come in at nine.  Linda did a great job handling Amy's anxiety regarding her care.   

We helped Amy clean her room, put away her new clothes and settle in, and left at seven.  At  7:45 we got a call from Amy that they were unable to take her to the restroom.  Turns out no one there was able to toilet her either.  Amy had to wait until the person coming to shower her arrived at 9.  Obviously, she was VERY upset about this.

There should always be at least one person on duty who is able to handle Amy, and in this case, this should have been addressed at 5 pm when Amy arrived home, as clearly it was going to be an issue.  Even if Amy had just gone to the restroom (she hadn't -- we'd been traveling all day), it would not be reasonable to expect that she would not have to go to the restroom for four hours.  Even more than the discomfort of holding her bladder, episodes like this lead to severe care anxiety in Amy.  

The second instance occurred on 1/1/13; I emailed about on 1/2/13: “Amy ran into another instance of not being able to toilet due the house being short staffed on New Years Day.  Her dad was picking her up to take her to a movie, and she was supposed toilet before them, but there were not two staff.  Amy said it was ok, that she didn't have to go, but she will always say that if she senses that's what people want or need to hear.  I trust that with the training of new staff there will be two people (at least one who is trained to assist Amy) at the house at all times that residents are home.

I’d like to confirm that this is being handled.  If two staff need to be onhand to toilet Amy, then two staff should be onhand from at least 7 am - 11 pm.  Also, how would Amy be moved from bed in the event of a fire, tornado, sickness, or other emergency?  How is she handled during overnight fire and tornado drills?  If there is only one staff member on hand overnight, they should be able to handle Amy independently.  

Amy is experiencing tooth pain and would like to go to the dentist as soon as possible.  I know there have been some changes in dental coverage, though I don’t know the details.  She’ll need to go to a dentist that takes her insurance, but in the event that filling is not covered (someone told me that fillings are no longer covered, but tooth pulling is?!), I’m happy to pay for the filling if necessary.  Amy’s teeth are very important to us.  
Please respond in writing to the matters raised above.  I do not understand how so many of the above issues remain unaddressed.  I will share your reply with Amy and our family.   I have confidence that you and Amy’s new Q have her interests at heart and will address these issues.   I look forward to your written reply.

Thank you, [Community Living Coordinator].



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