Monday, February 27, 2006


Letter addressed to me, regarding Michaela:

This is to notify you that your application for the Deeming Waivered program has been denied.

The reason that you are not qualified for the Medicaid program is:
You are not disabled according to Agency standards.

The policy used as a basis for this denial is found in the Alabama Medicaid Agency Administrative Code Manual, Rule: ACM 560-X-25-.05.

See enclosure for an explanation of your responsibilities and appeal rights.

B------ B------
Medicaid Representative

Nice, huh? Imagine the incredulous look on my face when I read "...not disabled according to agency standards." OK, so what do you have to do to be disabled in this state? Be on a ventilator? I mean, a customized wheelchair, special education, mental retardation, g-tube, cannot walk, talk or eat at times......sure sounds disabled to me. Whatcha think, am I playing this up or something? I don't know. Y'all might need to help me out here. Maybe I'm just kidding myself or something. Because Alabama sure thinks I am.

NOT disabled.


You know, I know what it is. Some M.D. on their board that reviews all these applications simply saw the "epilepsy" diagnosis on her file and probably immediately dismissed it. That's gotta be it. I cannot reason what in the world would keep them from deeming her disabled. By ANYBODY'S standard. Lennox Gastaut Syndrome, which just implys retardation and disability in itself, is probably not a specific diagnosis with a specific diagnosis code. I'm all but sure of it. Which means, the M.D. guy had every reason to deny a claim for "epilepsy". I would. Most all epileptics can function in society and don't suffer a disability that would require institutionalization (THAT'S the kicker here). HOWEVER, these rare epilepsy syndromes are the exact opposite of their milder parent syndrome. Not everybody understands this. I'm sure most people who look at Michaela in her wheelchair on her bad days don't automatically think "epilepsy". And you wouldn't either. We just don't associate the condition with that kind of dysfunction.

And you know what? It's really the Epilepsy Foundation's fault.

The Foundation tries very hard to change the way our country thinks and acts towards individuals with epilepsy. Check out their website. All smiling, happy, functional people. No kids in wheelchairs. It's a worthy cause, in all honesty. People with epilepsy don't need to feel shunned by their fellow citizens. It's not the "demon possession" that everyone thought it was way back in the day. Americans need to understand that epileptics need help every once in a while, but they are normal, functional people most of the time. So, it's really a good idea that they put out those public service announcements and all. Yet, it seems to do a slight disservice to those of us who live with the debilitating forms of this "disease". Us parents seem to really have to fight to get services for our "epileptic" children, because, hey, epilepsy is "not a big deal".

It's because of this that there's always an asterisk in my description of Michaela's problems: "She has epilepsy, er, *the rare, debilitating form called Lennox Gastaut Syndrome." But I still get the blank stares. Because they just can't get past what they see when they look at her, and the fact that I said "epilepsy." This happens in the hospital ALOT, believe it or not. Not Children's. But the local hospital. I guess it's just part of the whole "rare" thing.

So, needless to say, I'm going to appeal. In FACT! I found out what the Administrative Code Manual Rule 506-X-25-.o5 is (Thank GOD for the internet!!):

"General Categorical Eligibility Criteria"

(b) Disability-If under age 65, an individual must be blind or disabled. Disability is defined as the inability to engage in any gainful activity by reason of a medically determinable physical or mental impairment(s) which can be expected to last for a continuous period of not less than twelve (12) months.

[inability - the lack of ability (especially mental ability) to do something
engage - To involve oneself or become occupied; participate:
gainful - Providing a gain; profitable:
impairment - the occurance of a change for the worse
**definitions added by me**]

BINGO! That's my rebuttal, right there. All I gotta tell them is: Epileptic Encephalopathy (or, a degenerative disease of the brain due to seizures) which is another name for LGS.

I've already got my phone call into the woman who handled her case in Montgomery. So, I'll call her more tomorrow. Called a ton today. But I've only got 10 days to get my appeal request in, so I need to hurry. If I could just get her to answer my phone calls!

Stand by, Houston. We are in a holding pattern......

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