[tri-med] Re: Need help locating beds

----- Original Message ----- 
From: "Janet King" <jlvking@xxxxxxxxxxxxxxxxxxx>
Subject: [tri-med] Need help locating beds
I am so frustrated... We got word on Friday that not only has the =
> request
> for the SleepSafe bed for Hannah been denied, they have already been =
> through
> the second step, the doc-to-doc appeal, and even though the insurance
> companies doc agrees that this IS something she needs - it's medically
> necessary - the insurance company's contract with the state won't allow =
> them
> to cover it. And they think the SleepSafe is a luxury bed!=20


Hi Janet...
I can truly say I've been where you are and frustrated ain't the word!!! 
There was some small sliver of hope that we could get the bottom of the 
barrel bed approved...but slim it was and then...we didn't even want it 
because it looked like it was held together with bailing twine and dusct 
tape...worked for MacGuyver but not us!!! It was pretty obvious we weren't 
getting one through insurance. The insurance company said it "was out of the 
realm of normal coverage"...well duh!!!!!!!....actually that was a deciding 
factor in dropping insurance for Devon...if they weren't going to cover what 
we needed for Devon...then why bother paying for insurance for him??? It 
took an act of God to get ANY kind "equipment" covered...and that included 
even the smallest item!!

That was when I wrote to the Knights of Columbus and explained our 
need...complete with pictures of the bed and of Devon. If we had gotten the 
Vail Bed straight from OH, we could have gotten one for 6500$...through a 
medical supply it would have been 8100$. The Kof C held a fundraiser and 
raised enough money for us to get a used one for 1000$ + 600 shipping...and 
the guy selling the bed found us!!! We could have raised alot more money had 
the date of the event not fallen on the day after Hurricane Charlie....but 
still it raised 2580$...The total of the BED w/ shipping, the special swing 
w/frame AND the special Trike...was 2580.92$$...not bad huh?? The Vail bed 
has had some controversy...but it has been wonderful for Devon...and he 
LOVES his bed!! I would suggest  you not beat your head against the wall 
fighting a battle with insurance that is not likely to be won....write to 
the clubs in your area and explain the need...tell them that you know of 
others who have gone that route and you hope for the same success for 
Hannah's needs.

Good Luck!!!

Love,
Penny...loving & devoted wife to Joe, the best husband in the world...mom to 
Nick (15 yrs old...lover of Fishing, Dragons, Turtles, Metroid Prime, 
RollerCoasters, Chocolate Icecream w/ Ovaltine sprinkles, Devon (10 
yrs...lover of Barney, Blue, Nappy ol' Bear w/dreadlocks, Pooh, Elmo, & food 
in general. Full trisomy 13 w/balanced translocation 5 and 13) , and Trooper 
the Wonder Dog...our 9 ? year old yellow lab adopted from FL Lab Rescue 
12/13/02 :o)
Please visit the webpage my wonderful friend Karen made for me on our 
trisomy listserv at:
http://www.trisomyonline.org/victor.htm
AND...Devon's moment of glory in Exceptional Parent Magazine...
http://www.eparent.com/familiarfaces/ffaces_4_01.htm
AND...see our 3 boys on FL Lab Rescue's website at:
http://www.labradorrescue.net/success/index.html (Look for the name Trooper)
AND :o) http://livingwithtrisomy13.org/album9.htm
AND http://web.coehs.siu.edu/Grants/TRIS/
"We love the things we love for what they are"
Robert Frost 


                  Building ___ooOOoo__ Rainbows
                       www.trisomyonline.org
                  Families Helping Families On-line

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