Amy is like a load of somebody else's laundry to some of her caretakers, and especially to the house head. Amy needs to go to a doctor's appointment? Fine. We'll take her. She will be made to feel timid and nervous the whole time, and we are doing her a favor. Anything you and she ask for will be treated like it's unreasonable. We will do this in all circumstances. We will break her. She will not be the person you recognize when we are done. Little by little we will chip away.
Last week we went to Amy's neurologist in Chicago, her first appointment with a new doctor. It's been this mess where Amy's house head and higher-up tells me Amy needs to go to a doctor covered by the new state HMO, but can't tell me who is covered or not covered. I did my own research and found some answers, but no one ever got back to me as to whether I was correct. Then at the doctor's appointment there is a problem with the insurance, and the house head turns to me for answers. I'm not in charge of this! Then she ask me "where is Amy's Medicare card?". I don't know. Does Amy have Medicare? "I think so. Doesn't she? A red, white, and blue card?"
Then we go to schedule Amy's future visits and her house person is up in arms when the morning through noon visits are not available, because god forbid, it's inconvenient and will require additional rescheduling. I totally get it. The best appointments are between 10 and 1 because you miss all the nasty traffic. I get it. But acting like Amy is this pain in the ass inconvenience? In front of her? Holy crap, this is YOUR JOB. And she is a PERSON.
This mornings email, in response to asking for the time of Amy's upcoming doctors visit:
Amy’s appointment is at 11am on Tuesday September **th, 2011. Due to conflict with the van on her last visit to Chicago, we had to find alternative way home for the clients at *******, and their activity had to be cancelled due to returning at 5:15p.
In the near future we would not want this to affect our client’s routine and community integration activities. If it’s possible for staff to drop Amy off in Chicago and the family that’s meeting Amy could bring her home, if there will be other activities that Amy will be doing with the family member after the appointment. For example having lunch or wants to spend quality time with Amy.
Please send me your feedback. Thanks.
Amy had a noon appointment. Left her house at 11, before lunch. Her sack lunch was hanging on the back of her chair. After her appointment finished, I took Amy to the cafeteria to eat her lunch, while house head acted dismayed and made calls loudly about rescheduling resident pickup. I offered to buy Amy hot cafeteria food, since were there. She ate quickly, and we were on our way. I asked them to hang tight at valet while I picked up my car so Amy could catch a quick look at her new van. Apparently, all of this was outside the scope of normal life.
I responded:
If we were to have an outside activity planned, then of course, we would provide Amy transportation, however, Amy requesting to eat lunch is not an outside activity or unreasonable request. In fact, if you will recall, the doctor even told Amy to eat lunch as she was leaving her appointment. It seems the real problem is that not enough time was not scheduled for Amy's doctors visit. I would suggest scheduling an alternative way for the [CILA House Name] residents to get home ahead of time.
Following Amy's [other doctor] appointment, we were told there wasn't time for Amy to each lunch, and could she eat in the car on the way home. Thankfully that plan was aborted, since it is not safe, and instead we sat in the car while Amy quickly ate her lunch.
Hopefully, in the future, adequate time can be allotted for Amy's doctors appointments.
I know, it's a little shitty, but c'mon! Now I cringe, waiting for the reply.
///
Response from Residential Director, higher up of House Head:
The CILA homes have 5-6 clients in the homes and the Day Program ends at 2:45pm this is why appointments are scheduled in the morning to avoid interruption of afternoon transport for the other clients that reside in the homes.
[House Head] please seek an alternative time for this appointment, unless the family is available to take her to this appointment on Tuesday and in the future if [House Head] as QSP will accompany Amy she will schedule appointments in the AM to avoid afternoon transport interruption.
And response:
Do not cancel this appointment, as other plans have been set in motion that require this doctors visit. I'm working on having our van by Tuesday in which case I would be able to drive her home (but not to) the appointment, but I must ask, what do you do in the case of residents whose family don't own specialized vehicles?
The upcoming appointment was set by [House Head], and I believe it was the earliest one available. As far as future appointments, Amy's neurologist does not see patients in the AM.
I need to learn more about their responsibilities and obligations, but I know it is on them to get her to her doctors appointments. Why is everything a fight? Why do I have to be involved in every freaking step? Whey can't I just show up at doctors appointments? Why is everything a five email conversation, followed by a stirring up of anxiety in Amy with corner of the mouth comments?
If we were not involved in Amy's life, I wonder if she would even have her regular neurologist and psychologist visits. Our involvement in Amy's life is treated as an inconvenience by this house.
So when did I become a person who airs their dirty laundry on the internet? Apparently, today. I'd been urging my mom for a long time to start sharing the drama and correspondence that goes on with Amy's home, and now I'm going to.
My mom was a fierce of Amy's rights and desire to be treated like a real person. I need her help being fierce, so I'm going to be begin reviewing her past correspondence and sharing them.
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