[tri-med] Re: Fight for Devon's Thick-It AND a REAL WORD

You brought tears to my eyes!  I think we would have a party if Elanor said 
Elmo!  Hooray for Devon!

Jennifer, mom to Arwen, 9; Elanor, 7 (T18); caregiver to Joe 27, and Eric, 
20 (both w/ CP); and wife to Andrew.
Boise, Idaho, USA
----- Original Message ----- 
From: "plugginalongpv" <plugginalongpv@xxxxxxxxxxxxx>
To: <tri-family@xxxxxxxxxxxxx>
Cc: <Livingwithtrisomy13@xxxxxxxxxxxxxxx>; <tri-med@xxxxxxxxxxxxx>
Sent: Saturday, April 28, 2007 9:14 AM
Subject: [tri-med] Fight for Devon's Thick-It AND a REAL WORD


> Hi All :o)
> FABULOUS news today all around!!!
>
>
>
> First of all.some of you may remember that Devon's Thick It was denied
> through Med Waiver as it is initially every year (Med Waiver has been
> providing the Thick It for Devon since 2000). However this year.upon
> appeal.it was summarily denied. This forced us to request a Fair
> Administrative Hearing before an Administrative judge. We were advised we
> would be better served if we had an attorney. Of course we cannot afford 
> an
> attorney. BUT.we were given a phone number for The Advocacy Center for
> Persons with Disabilities. I called, truthfully expecting to be politely
> ignored. Imagine my surprise when they were not only very attentive and
> suitably outraged.but they jumped right in immediately putting it before
> their Care Committee to review the facts and decide if they could help us.
> Next a paralegal contacted me for more information and then an attorney
> named Dana called and emailed me as well. All of this BEFORE they even
> definitively took our case!!! At one point a few weeks ago I was contacted
> and told that YES Dana is representing us. I was very happy but being the
> worrier that I am, I thought I better clarify AGAIN that there is no cost
> for representation. Just seemed too good to be true :o) NEW FLASH! It is 
> NOT
> too good to be true!!!! They do this because it is what they live for.they
> fight for families/persons with disabilities at NO COST to the family.and
> they REALLY do fight for them!
>
> For the past month I have had to pester our beloved Pediatrician AND her
> nurse for letters and scripts which she has promptly supplied even though 
> I
> think she must be the busiest doctor on the planet.I've pestered Devon's
> pharmacist who is one of the few on the planet who will go the extra mile
> whenever needed and even lets us run a tab. For this I am eternally 
> grateful
> and thank them both very much!!!!
>
> Now, understand that Thick It is NOT covered by Medicaid even though it is 
> a
> medical product used to thicken liquids/foods so that people who have
> Dysphagia (uncoordinated swallow that causes aspiration) are must less
> likely to aspirate. It is available over the counter.but using 2 - 30 oz
> cans per month (1 for school and 1 for home).it begins to get expensive 
> for
> families like ours with a limited income.
>
> Yesterday.I received an email from Dana (our attorney).that MEDICAID (who
> does not cover Thick It) is covering Devon's Thick It for a year. A letter
> with the special code/state # is forthcoming that we will be able to give
> Ken (our pharmacist) and he will be able to bill Medicaid for Devon's 
> Thick
> It :o) The attorney has asked us to please have our pharmacist order some
> Thick It for Devon and bill Medicaid with the code to make sure this will
> actually work before she asks for the Administrative Hearing to be
> dismissed. I'm so happy that we won't need to have the hearing after
> all.just the thought of going before a judge intimidates the spit out of 
> me
> :o)
>
>
>
> AND.ONE MORE THING!!!! DRUM ROLL PLEASE..
>
>
>
> The other day I was wearing my Elmo tshirt and Devon was sitting with me 
> and
> he was "talking" (making his beautiful sounds and noises). He kept looking
> at my shirt and pointing to/touching Elmo and saying "MoMo"! Not "mama" as
> he calls me. I was so excited and he kept doing it over and over again!!!
> But it gets better!!!! This morning I put one of his DVD's in and I had 
> him
> on the toilet and he SAID THE WHOLE WORD "Elmo".Joe heard it from the 
> other
> room too!!!! He said it like 3 times.not "MoMo".he REALLY SAID "Elmo"!!!!
> Could it be a fluke??? I suppose so.but I'm thrilled just the same :o) I
> really believe we can attribute this to his new Tech Talk :o) And possibly
> his new teacher/paras and classroom too??? He seems to be doing better in
> his new environment at school :o)
>
> He's missing his Tech Talk at the moment because it quit working 3 days 
> ago.
> And after trying what the directions say to try.it still didn't work. So I
> called AMDI expecting to hear grief over it since it's very new (just got 
> it
> in Feb). I spoke to a woman named Erica and she was very nice and very
> helpful. From everything I told her she is hoping it's only a faulty AC
> Adapter/Charger and she sent it out to us yesterday. She/we would rather 
> not
> separate us from the Tech Talk. I'm to call her when we get it and let her
> know if it works. If it doesn't,  she will send a pick up for the Tech 
> Talk
> and they will either fix whatever's wrong or give us a brand new one and
> we'll have it back within 5 days of pick up :o) So.it's great to know they
> are very supportive and stand behind their product :o)
>
>
>
> Anyway.that's our news bulletin for today :o)
>
> Take care.
>
>
>
> Love,
>
> Penny...loving & devoted wife to Joe, the best husband in the world...mom 
> to
> Nick (16 yrs old...lover of Fishing, Dragons, Turtles, Blue Collar Comedy
> Tour, RollerCoasters, Chocolate Icecream w/ Ovaltine sprinkles, Devon (11
> yrs...lover of Barney, Blue, Nappy ol' Bear w/dreadlocks, Elmo, & food in
> general. Full trisomy 13 w/balanced translocation 5 and 13) , and Trooper
> the Wonder Dog...our 10? 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.html
>
> AND...Devon's moment of glory in Exceptional Parent Magazine...
>
> http://www.eparent.com/familiarfaces/ffaces_4_01.htm
>
> AND...see our Trooper 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/
>
> "Those who matter don't judge me .... those who judge me don't matter."
>
>
>
>
>
>                  Building ___ooOOoo__ Rainbows
>                       www.trisomyonline.org
>                  Families Helping Families On-line
>
> 


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

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