I\u2019m 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\u2019s 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\u2019m enormously grateful, I can\u2019t help but be angry as well. It shouldn\u2019t be this way.<\/p>\n
It shouldn\u2019t take a blog-post blast and an explosive Twitter campaign in order to get the medical equipment that my daughter needs. While I\u2019m infuriated that it took such measures, I\u2019m also thrilled and a little guilty that I has them at my disposal. Most parents don\u2019t.<\/p>\n
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, \u201cYou really think you\u2019re David? With all of this readership and your connections, you\u2019re like David standing on a really big platform.\u201d<\/p>\n
I can see her point. This position is a unique one to be in, and it\u2019s 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\u2019t 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<\/em> 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\u2019t find, and that\u2019s just flat wrong.<\/p>\n 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\u2019m brainstorming, and taking suggestions. It shouldn\u2019t 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?<\/p>\n ***Posted from the air somewhere between Portland and Dallas. If I\u2019ve typed something incorrectly, don\u2019t judge. Typing in turbulence is hard.<\/p>\n<\/body><\/html>\n","protected":false},"excerpt":{"rendered":" I\u2019m 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\u2019s wheelchair wheels, but also a denial of the appeal. This weekend, we have blanket approval […]<\/p>\n","protected":false},"author":1979,"featured_media":0,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[1],"tags":[],"class_list":["post-3877","post","type-post","status-publish","format-standard","hentry","category-uncategorized"],"yoast_head":"\n