I mentioned in my previous post that a woman from our parish called to tell me that they would be reviewing Charlie’s case again to see if we qualified for more services than we are currently receiving (now we get none). Frankly, I was shocked. Louisiana is one of a handful of states that has a waiting list for in-home services. Basically, if you are a disabled minor in Louisiana, they put your name on a waiting list and after about eight or nine years, you might actually get some type of help.
Help can come in all shapes and sizes–modification to your home to make it wheelchair accessible, a respite worker, or maybe a care individual to help with bathing. The best part of the deal is that your child gets a Medicaid card–Medicaid is known for paying for equipment when private insurance won’t.
These all sound like nice things, but like I said, eight or nine year wait, so I wasn’t exactly holding my breath.
So a call telling me our case is up for review is a little strange. I’m not getting my hopes up or anything, but it is interesting. I had to answer a few questions so they had an accurate report for the review committee. The woman on the phone ran through a list to describe Charlie:
- Long term need for a wheelchair
- Brain damage
- Limited vision
- Limited use of his arms
- No use of his legs
And man, that’s a tough description. It’s hard to think of my child as a list of deficits.
So, for the sake of my sanity, I made my own list. Charlie is also:
He is many things and while I understand the importantance of measuring his limitations, a list of them does not do him justice.
Charlie is getting a molar, so I can’t get that hand out of his mouth these days.