Managed Care

Amy is overdue for botox injections -- they were due October 2011.  It's not for vanity.  Amy gets botox injections to release her spastic muscles.  Her spasms are so intense they hurt her, make it difficult to sleep, and make it hard to position her comfortably.

Anyway, her house has been dropping the ball again and again.

She was finally going in on Monday, but it's cancelled.  Why?  Because Illinois moved their medicaid patients to managed care, and the managed care plan doesn't cover this treatment.

It also only covers up to 18 dollars on glasses frames and up to 30 dollars on lenses, which doesn't get you far when you are a -9.5.

They also don't cover her preferred psychologist or neurologist.

So Mondays appointment is cancelled.  I will now resume spinning my wheels, through first I must focus on spinning my wheels on trying to get her new glass since she snapped her glasses yesterday.  Her backup glasses.  Her real glasses broke in November 2011, but have yet to be replaced because her house will not take her.  Sis is going to take her on Sunday, and we'll pay for them, because there is no other choice.

God, I hate everyone and everything right now.

Friday Rage

Just got a call from Amy to tell me that she got home from work (3:30), and was "asked" to wait until people returned from shopping (as of 5, not home from shopping yet).  There have to be two people on duty for Amy to be toileted, and as some people were shopping, there was only one caregiver at the house.  

No answer calling her Q (another new one, though her voicemail still names MeanyCold -- that's 3 Q's ago) or the community living director (her number didn't work), so I had to try the only other person I could think of, the executive director.  At 4:55 on a Friday, executive director answers her phone, says she'll put me in touch with the community living director ASAP. 

Talk to Amy again, she is being toileted by the sole caregiver on duty.  One of the senior staff had said to the caregiver, in front of Amy, that Amy could wait to use the toilet, since she'd waited 8 hour before.  

Community living director calls me back to say not "Sorry, this will be handled", but to tell me there is no problem.  The sole caregiver, says Community Living Director, NEVER told Amy she couldn't go to the toilet -- that was someone else.  

Uhhhhhhhh... hello?

Senior staff members says Amy can wait to pee since she's waited 8 hours before (even though Amy is to be toilet without question every day after work).  Two staff must be on duty for Amy to use the toilet.  After senior staff left, there was only one staff on duty, so Amy couldn't be toileted, and she knew it, and so she told me what happened and asked me to handle it.  

In the past, we've been asked NOT to ask staff to provide care they are not authorized to give (as in asking single care giver to toilet Amy alone.  

But of course, as always, the agency is perfect, the agency can do no wrong, we are trouble, Amy is a liar, we are liars, there is not problem, this is a great place.  So says the agency.  

CANNOT WAIT to know for certain she is leaving this place.

"Get me outta here" says Amy.  

--

I'm so bad a blogging.  Stuff like this happens constantly.   

Sunny Sunday

Ok, so actually this was last week, but I'm slow on posting.  She was down here for a visit.  Damn, I love this girl.  Please note the matching cowls.  We walked to the Esquire for lunch and worked on crossing streets in response to the audio alerts.  

Everything is ok right now.

I mean, I miss my mom like mad, and I dropped a very sharp ulu knife on my foot last week, and I burned myself making Trini doubles for dinner, BUT, Amy is ok today, and yesterday and probably tomorrow.  She is calm and logical.  And I made doubles for dinner!  And I love my sisters, my husband rules, I just had a blast with my inlaws, and my chubby, clumsy cat continues to be both chubby and clumsy, so I got that goin for me.  Which is nice.

A Response to Yesterday

This stuff might now seem like a big deal, but please remember, Amy CAN'T MOVE.  It's not like in a movie where a person who can't walk drags their non-working legs behind them as they crawl for help.   She can't sit up, she can't roll herself over, she can't crawl, or lift her head to clear her mouth of vomit if she was vomiting. She can't reach over and pick up her phone.  The only reason she was able to reach me is that her iphone was on her chest (I LOVE YOU, SIRI).  If she'd dropped her to phone to where she couldn't push the one button, she would have had no way to get help.  

Once Amy is out of her chair, she is helpless.  

What happened yesterday what frustrating, inappropriate (this person is her employee essentially), but also terrifying because what if she had be vomiting? Feeling like she was going to have a seizure?  Fallen out of bed?  No one came to help her when she called.  

Response from Community Living Director:

"At this time , I am unsure what happened, I will follow up with the staff that worked last night,However when I called [Hell House] this morning, I experienced the same situation, the phone ringing and no answer on several calls.
When I finally spoke with [long time staff member], she looked at the phone and found the ringer off and turned it back on.  [Long time staff member] will purchase another monitor so that staff can hear Amy when she is in her room. Hopefully this will correct the situation."

Uhhhh, ok.  The ringer was not off.  I suspect that someone turned the ringer off after they failed Amy so they'd have an excuse.  Of course, they ready think I'm a crazy MF-er, and suggesting this wouldn't help.  My response:

"Amy wasn't going to bed yet -- just in bed -- so it's possible her monitor wasn't turned on.  In the past I've been told it's only on at night so Amy has privacy to talk on the phone, which is important.  The last time I saw Amy's room, her monitor looked not to be in use at all.
Is it possible to get her a pager button that she could wear around her neck that sounds a bell?  This is the setup a friend has.  It allows her privacy while still being able to call for help.  We could put velcro on the back so it could be stuck to the wall when she's sleeping.   Something like this: http://www.vitalitymedical.com/smart-caregiver-personal-patient-alarm-system-1.html?utm_source=google&utm_medium=base&utm_campaign=products&feed_special=google&gclid=CN28_aK_gbUCFY1DMgod5mMA0g.... would need to have sensitive button.  
Amy could here the phone ringing at one point, so I don't think the ringer was off, I just think the person was on the phone.  Is there call waiting on the phone?  "

A good question from a friend -- can I sue Amy's house for negligence?  I don't know, but I do know that we've reported them to the state for things way worse than this, and the state clears them every time.  

Urgent: Amy in room, can't get help

"Hi, [Community Living Director],

Amy has been calling for help from bed so she can go to sleep (it's 10 pm) -- her light is on, her head is up.  The door to her room is open.  She has been shouting for help, and she called the house phone twice with no answer.  She can hear the house phone ringing but no one is answering it.  

Is there another way to get ahold of the house to alert them that Amy needs help right now?  Is there definitely someone at the house right now?

What if she was vomiting and needed help?"

Ten minutes later:

"I've been calling for the last eight minutes over and over and the phone is not ringing in the house, Amy says the staff member is currently talking on it now -- she can hear her."

Five minutes later:

"Doorbell just rang at the house, new staff got there and responded to Amy right away.  What was happening there that she was not able to be helped?"

Same Love

"When I was in the third grade I thought that I was gay
‘Cause I could draw, my uncle was, and I kept my room straight
I told my mom tears rushing down my face
She’s like 'Ben you've loved girls since before pre-k.'  Tripping.

Yeah, I guess she had a point, didn’t she?
Bunch of stereotypes all in my head.
I remember doing the math like, “Yeah, I’m good at little league”
A preconceived idea of what it all meant
For those that liked the same sex
Had the characteristics

The right wing conservatives think it’s a decision
And you can be cured with some treatment and religion
Man made rewiring of a predisposition
Playing god, aw nah here we go
America the brave still fears what we don’t know
And god loves all his children, is somehow forgotten
But we paraphrase a book written thirty-five-hundred years ago
I don’t know

And I can’t change
Even if I tried
Even if I wanted to
I can't change
Even if I try
Even if I wanted to
My love
She keeps me warm


If I was gay, I would think hip-hop hates me
Have you read the YouTube comments lately
'Man, that’s gay' gets dropped on the daily
We become so numb to what we’re saying

A culture founded from oppression
Yet we don’t have acceptance for ‘em
Call each other faggots behind the keys of a message board
A word rooted in hate, yet our genre still ignores it
Gay is synonymous with the lesser

It’s the same hate that’s caused wars from religion
Gender to skin color, the complexion of your pigment
The same fight that led people to walk outs and sit ins
It’s human rights for everybody, there is no difference!

Live on and be yourself.

When I was at church they taught me something else
If you preach hate at the service those words aren’t anointed
That holy water that you soak in has been poisoned

When everyone else is more comfortable remaining voiceless
Rather than fighting for humans that have had their rights stolen
I might not be the same, but that’s not important
No freedom till we’re equal, damn right I support it

We press play, don’t press pause
Progress, march on
With the veil over our eyes
We turn our back on the cause
Till the day that my uncles can be united by law

When kids are walking ‘round the hallway plagued by pain in their heart
A world so hateful some would rather die than be who they are
And a certificate on paper isn’t gonna solve it all
But it’s a damn good place to start

No law is gonna change us
We have to change us
Whatever god you believe in
We come from the same one

Strip away the fear
Underneath it’s all the same love
About time that we raised up