Christopher

Mar. 7th, 2020 07:57 pm
ljgeoff: (Default)


Christopher died this morning. I took this picture of him and his mom Linda last month, on his birthday. When he was an infant, doctors told his mom that it was unlikely he'd live to ten years or twelve. He died a bit past his 32nd birthday.

He was very loved by many. And by me.
ljgeoff: (Default)
The main problem that I'm working on right now is getting good care for Christopher when I'm either working or doing stuff that is not Chris-friendly, like reading a book or zoning out on the internet or writing. It's very much like having an active toddler who you can't leave alone for a minute.

I have Donna in Lansing to work up to 5 days a week in the mornings, and that will cover most of the Lansing time. But I need coverage for my whole work-sleep cycle. Jake has said that he's willing to pitch in as long as it doesn't interfere with whatever his new job is going to be.

So, I could leave Lansing for work in the late afternoon, get to the apartment and hand Chris over to Jake. I'm not sure yet how my shifts will run. I figure they'll be 8-8's at the latest. An aide will need to come in at 7 am and take care of Chris until about 3 pm. He'll usually nap on the couch for a few hours. Then I can get up around 5-ish, give him his dinner and meds, and go to work. If Jake is working or having a life, I'll need an aide to cover the time between me leaving and Jake coming home.

Do this for three or four days - gods, I hope my days are all together!

So, that's 8-12 hours a day for three or four days. Then, on my days in Lansing, he'll have Donna in the mornings for three or four days. The State pays for about 60 hours a week of care; Chris pays anything over that out of his SSI. We also have Chore Services money that can cover some hours.

I figure I'm going to need around 65-70 hours covered.

The other big thing is that I'm going to have to find someone in Riverview or Wyandotte who will be good for Chris, and train them. The training will take a day or two. Maybe I should find two people? That way I can cover any call-ins. I've got three weeks to set this up.
ljgeoff: (Default)
Chris receives funding from Community Mental Health for aide hours. When he lived with his mom, she was granted about 7 hours per day for an aide to come and take Chris out into the community and to help her in the home.

When I took Chris into my home, he didn't have a current care plan and because of Linda's health problems (she had a heart attack) and Chris' case manager's incompetence, he had no care plan at all from July of 2017 through February 2018. But during those six months, Chris' case manager told me verbally, in front of both Linda or Kayla, to bill for 12 hours of care per day. I would care for Chris gratis the other 12 hours per day. I was also told I could have 14 days of vacation time where Chris would have round the clock care.

In February, we were told that the 12 hours of aide time was never approved, and that Chris had to "pay back" those hours by having his hours from February on reduced to 6.8 hours per day, and the aide pay cut from $12/hr to $10/hr. We met with the case manager's boss on Feb 22 and were given the options of a "fiscally responsible plan" or to put Chris in a group home.

To be clear, state law says that disabled citizens have the right to the "least restrictive" home environment, and that the state is responsible for making that happen with in-home care. The hours given to the disabled citizen are to based on need, not funding.

When I signed the new care plan in February, it was with a strong objection to this cut in hours and aide pay. I went and talked with my state representative and and filed an appeal. CMH came back saying that I'd filed the appeal two days too late. I contacted Michigan Protection & Advocacy Service (MPAS) and Chris was awarded an advocate.

Instead of an appeal, we filed a grievance. That was a month ago.

Yesterday, the CMH representative called to say that since I didn't get a copy of the care plan until February 22, they were going to use that date for the appeal, and so the appeal is going forward. Today!

After dicking around for a month of trying to get the case manager, the case manager's boss, and the case manager's boss' boss together for a meeting, we are having the meeting today at 11:00.

Because of the short notice, Linda, Chris' mom won't be able to come -- she's babysitting her grandkids. She's busy at this moment writing up a statement, though, attesting that she heard Chris' case manager tell me that I could bill for 12 hrs/day for an aide.

But the advocate and Kayla (who also heard the case manager promise 12 hrs/day) will be there, and I have a copy of my work hours (holy shit, I work a lot!) to attest to Chris' need for hours.

Wish us well! The judgement will take a couple weeks, but I'm hoping that the someone will at least allow me to bill for my work hours for the rest of the month, and for Wiscon.
ljgeoff: (Default)
I have three things going on that are stressing me: getting through Jerome's memorial service, getting through Chris' CMH grievance, and getting through Wiscon.

Jerome's service is this Saturday. My job is to buy the food, pre-bake the ribs, and get it all together for Mike to bring over. I work Saturday 6a-7p, and after work I'll go to the service and then bring the boys home.

I have our monthly meeting with Chris' case worker today, and the grievance meeting is in two weeks. What I'm praying for is to get enough hours of aide coverage for my work schedule. Having some coverage so I can have time to go do things on my days off would be ideal.

Normally, Wiscon would be a joyous thing, but this year I forgot to ask for the time off and I was thinking about it this morning and I hope to god that my work lets me go because I have commitments.

Things that I want to be doing: gardening, writing, making mead, making my cat mosaics, making some quilts.

Yesterday's house cleaning went well, and it feels good to be in a cleaner house.

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