Using My Advantage

I’m on my way home from a speaking thing in Portland, OR, and I keep thinking about the amazing events of this past week. On Sunday evening we had not only a denial letter from our insurance company for Ella’s wheelchair wheels, but also a denial of the appeal. This weekend, we have blanket approval for everything we requested (even the cosmetic things we never expected them to cover) and a Swear Jar holding enough money to easily cover the 20% co-pay. While I’m enormously grateful, I can’t help but be angry as well. It shouldn’t be this way.

It shouldn’t take a blog-post blast and an explosive Twitter campaign in order to get the medical equipment that my daughter needs. While I’m infuriated that it took such measures, I’m also thrilled and a little guilty that I has them at my disposal. Most parents don’t.

While I was on an early morning walk this week with Bonnie Engstrom (she writes at A Knotted Life. You should be reading her) I mentioned that I felt like David must have felt when he brought down Goliath. She gave me a stunned look and said, “You really think you’re David? With all of this readership and your connections, you’re like David standing on a really big platform.”

I can see her point. This position is a unique one to be in, and it’s easy for me to forget that. I think of myself as a normal mom, but I forget that having all of you out there willing to help isn’t where most people are. I know that most parents of kids with wheels have to navigate within a system which is designed to frustrate and deny. The average family we know spends 8-12 months on the approval/denial/appeal/grudging approval train, and then has to find the money for the co-pays which can easily total thousands of dollars. Our 5 month, 2 denial, one Twitter war path is a shortcut they can’t find, and that’s just flat wrong.

I have a few people I need to talk with about this whole thing, but t seems like there has to be a way for me to pull a few more Davids up onto this platform with me. There has to be a way I can share it to help them and/or their children. I’m brainstorming, and taking suggestions. It shouldn’t just be a fast track unfair advantage for Ella. How do I (and we) use this megaphone to effect change on this whole dang system?

***Posted from the air somewhere between Portland and Dallas. If I’ve typed something incorrectly, don’t judge. Typing in turbulence is hard.