August 29th, 2009

We have so much going on right now. Then again, when don't we? What's going on?

I'm having a really hard time fighting with Cobra and the Social Security Administration. We have BCBS medical insurance through Cobra. It is set to end (18 mnths) at the end of November. There is however a clause that states that if any member of your household is disabled, you can extend the Cobra another 11 months. All you have to do is get a Disability Determination from the Social Security Administration. Sounds easy, right? Well, it's not. Kinnick and Carver have obvious disabilities that will easily qualify them as Disabled - Blindism, Deaf, and CP are 3 automatic disabilities - really not much to fight about with these. The records are pretty clear. However, the Social Security Administration will not give a person a Disability Determination UNLESS they are poverty level or worse. What!!?? Apparently, most programs will accept a Disability statement from a doctor. Except Cobra. I'm still checking to see what the IRS requires, but I'm pretty sure that they require the same statement to file the Disability on taxes. There is no way around this. I have screamed and yelled at both Cobra and the Social Security Administration. I even went to the media to get their attention, but no luck. I'm one voice and it isn't big enough. Per the Social Security Administration, they first see if you qualify based on income (SSI or SSDI qualifications), if you qualify based on income, then they will work up a Disability Determination. If you do not qualify based on income, it is dropped and you are denied a Disability Determination. Why, because they say that there is no point in spending the time and money coming up with a Determination when you're not entitled to any award money. But, yet the Federal Gov't requires this in order to qualify for some programs. It's just wrong! So, if any of you know a way around this, please share. I'm at my wits end.

What else are we up to?

Kinnick is sick, AGAIN. We seen her pulmanologist on Tuesday. She believes that Kinnick's fundo has torn out and that she is actually aspirating into her lungs. Makes sense to me... she goes from being just fine one minute to O2 dependent the next. It usually takes an antibiotic to clear her lungs. Plus she is able to throw up now, indicating that she's definitely able to get stuff up from her stomach. So, Kinnick is going in for a 24 hr stay at the hospital to have a scope done to look at her fundo and vocal cord paralysis. They're also going to swab her lungs to see if there is food residue in the lungs. While they are in there, they're going to put in a PH probe to see how bad she is refluxing - another way to prove the fundo isn't working. We're also scheduling to have swallow studies done on both kiddos to see how they are manipulating their food and swallowing it. This should also tell us if Kinnick is aspirating while eating. It doesn't end here. Carver is also scheduled for another sleep study to see how he's doing now that he's had his T&A's removed and he is tentatively scheduled to have his second CI surgery on September 30th. Then there is the wheel chair clinic. We are attending a wheel chair/seating clinic this week to get wheel chairs for Kinnick and Carver so they will be ready to start school in March. Yes, in Wichita, delayed children start school at age 3. This is also where all of their therapy will take place. It's going to be a huge adjustment. I'm not really sure how this is going to go.