News, Make-A-Wish, and a Court Hearing #SMA

Wow! We are so happy with how the WBAL news segment turned out!! Please take 5 minutes to check it out (or click here for the YouTube broadcast) if you haven't already. Basically, we've been battling our insurance carrier over skilled nursing coverage in our home and I turned to WBAL to see if they'd be interested in doing an investigation, and you can see the result. Yeah, the situation sucks, but this is good press for Spinal Muscular Atrophy (SMA) and everyone needs to know how disabled families can easily be bullied by these MULTI-BILLION DOLLAR insurance giants.

We've received our final approval for Emily's Make-A-Wish trip!! Yep. We'll be heading to the sunny south to take in the sites of DISNEY!! WooHoo!! And, yes, we'll be sure to... oh... I dunno - maybe blog and tweet while we're there. ;)

The other thing I haven't been talking about is this: we are going to court against CareFirst insurance over the denial of skilled nursing. We have navigated the formal and proper appeal and grievance process with both CareFirst and the Maryland Insurance Administration, as you can read in this previous post, which has lead to my requesting a court hearing with the Insurance Commissioner.

So, on 20 Apr 2010, the burden is on our family to show that CareFirst has done something unlawful by determining Emily has no qualifying medical needs for nursing and consequently canceling her nursing coverage. We'll be working on things until then.

I've been asked why we'd continue to fight this even though Emily's nursing is now covered under Maryland Medicaid. Well, if we can set some precedent for other families that are faced with this same crappy, unethical situation hopefully they'll find some comfort knowing there are other families fighting the same battle - and that they SHOULD NOT TO GIVE UP!

Let us know if that's you and maybe we can find a way to help you fight too. :)


Eileen said…
I admire your strength, dedication and commitment to not only Emily and your family, but what you are doing for so many people!
Groves said…
You are warriors in cause that is clearly worth fighting for - and I am SO glad that your efforts are getting some notice and some back-up.

Praise God for your family! You honor Him with all your hearts as you keep going day after day.

We are always encouraged to read your posts and want to **thank you** for your powerful witness and the way that you build up the whole Body with your tremendous faith.

Praying for you,

Cathy Groves
CureSMA4Stella said…
I'm just now able to watch the video and you guys did SO great! Thanks for sharing this as I have passed it on to our case mgr who says our insurance doesn't think it's medically necessary since we are COMPETENT in her care and therefore will be dropping us soon to pass the buck to medicaid. Geez! Thanks for sharing and making us feel better! :)
Sara Boyle said…
Loved the WBAL spot. Your family did a great job! They showed previews during the olympics and I kept thinking they were for the new program each evening. Ended up watching a lot of WBAL trying to figure out when it would show. So glad I finally got to see it. Thanks for sharing part of your journey with us. Yours is a brave and caring family. Enjoy your trip!