[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

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