Outraged!!!

Dear Family and Friends,

Mailed to Allie on April 1, 2011
from Central California Alliance for Health:

Notice of Action
About your treatment request
A Customized Power Wheelchair
This request is denied by the Alliance because:
On March 16, 2010 (think they meant 2011) the Alliance requested that National Seating & Mobility send more clincal documentation in regards to your medical history and your specific needs. Though National Seating & Mobility did send clincial information there are some parts of your history that the Alliance still needs clarification on in order to ensure your needs are met as appropriately as possible. Therefore, this power wheelchair request is currently denied.

To make a long and anger provoking story short, when Allie turned 21 the "pocket" overseeing payment of her medical supplies changed. So, although we have spent over a year working to get the necessary referrals and appointments in place so that she could trial the chair, and receive the correct prescription, so that it could finally be ordered...they now tell us we have to start over! They have no history on Allie she tells me. This is a very expensive chair, she tells me. We need her to see new doctors and new therapists in our area. Are you kidding me? The chair was prescribed by therapists at Valley Medical.....one of the leading spinal cord rehab facilities in the world. And I have boxes of medical reports and history I could send you describing my daughter's medical condition and history. Yeah, sorry my daughter's disability is such that her chair is a bit extreme compared to most. I guess that goes along with the fact that her injury is a bit extreme compared to most. In the latest conversation I had with this "case manager", I was informed that she could no longer talk with me, since Allie is an adult and apparently the POA I faxed to them was insufficient. I am completely outraged. I was wrong -- our health system is not broken -- it is criminal. My daughter has been sitting in an ill fitting manual chair for close to two years. Now they tell me, we have to start over. How is this cost effective? Sounds to me like somebody is spending a dollar to save a nickel. How can an entity that has "alliance for health" in its name, demonstrate such lack of compassion and concern for my daughter's physical as well as emotional state? How much longer will she be stuck in this dang chair! Isn't life tough enough?

On the upside Allie received the FES Bike she bought. After a few frustrating tries/adustments and a new seat cushion purchase, she is up and going. It's awesome to watch her legs move. The first time Auntie Vicky saw Allie using her bike, her reaction was the same as mine was when Al first used the bike at Valley Medical. Guess I'm not the only cry baby in the family :).We are excited at the positive impact this bike will have on her overall condition. Hopefully, soon she will have an opportunity to go to Dominican, to trial the upper body part of the bike.

We are enjoying the awesome weather. Allie passes her days by enjoying the sunshine, using her laptop, and now she has her bike to use. Her best times remain those spent when friends visit or the still all to rare occasion, when she gets to go out with them. She looks forward to the frequent visits from her uncle, aunts, and cousins. Connor, his mom and sister made it over for a visit a couple of weeks ago. It was great to see them. We wish they lived closer or that it was easier for Al to travel.

Allie and Marsha are getting along great. Once again I feel so lucky to have yet another awesome person in my daughter's life. It is comforting to know that Allie has someone we both respect and trust, not just as a caregiver, but as a friend to talk to, especially when my exhaustion, frustration and sadness get the best of me and my patience has run out (not to mention my back).

We continue to pray for Allie's breath. I visualize her walking. I dream of her laughing outloud. We believe in my daughter's recovery. We believe in the efforts of those working to find the cure. I just wish some things didn't have to be so difficult in the meantime.

Thank you for listening, for your prayers, for your love and support. Please continue to visualize my baby girl's recovery.

In closing, our thoughts and prayers go out to the family and friends of Kirsten Wetterhorn, a young woman from our valley who was just lost to us in an auto accident. I wish I knew words that could bring comfort in this their darkest time. Please know our hearts ache from your tragic loss.

Love, Peace & Happiness,
Deborah