[tri-med] Medical Insurance Vs. Medicaid dilema...Input needed

Hi Everyone :o)
I think this post should probably have been only posted to Med list but since 
it's a "family" concern too and some only belong to family list and not med 
list and I need advice I posted to both. Here's the dilema. We have had 
insurance on Devon since birth. Medicaid came with his SSI. And Childrens' 
Medical Services have been received because he received Medicaid. We have a 
unique set of circumstances because of the insurance. It wasn't bad at all when 
we had Humana which was a PPO...but now that we have Florida Health Care which 
is an HMO we lost CMS (which meant ALOT less problems getting specialists 
surgeries, etc). My boss kept the PPO as long as he could, basically just for 
me...but could no longer justify it as of last October with the cost hikes. 
When we had the PPO, Medicaid paid for Devon's RX's also....BUT if Nick or I 
needed an RX they were either 10 or 20$....NOW with the HMO they are 7$ each 
for Devon's, Nick's and Mine...and Medicaid no longer pays for Devon's. The RX 
situation isn't a bad one all in all...it probably all comes out in the wash so 
to speak. BUT...for Devon to see a specialist such as an ENT, Pulmonologist, or 
Opthalmologist, or for him to go to a Craniofacial Clinic from time to time it 
takes an act of God. His Ped has been really great and has been handling his 
Pulmo and ENT stuff but he can't really see much in Devon's ears and they 
require monitoring because of the perfs...I loathe the Opthalmologist we are 
forced to see through this HMO and Florida Health Care in it's infinite wisdom 
has denied his Craniofacial Clinic because it is considered "cosmetic". 
Obviously, they can't be bothered to actually open his chart (and read) in 
which lay the ONE MILLION PAPERS that they made me fill out with his extensive 
history on them (including the fact that he was born with a cleft palate and 
requires periodic checks ie: craniofacial clinic)!!! GRRRRRRRRRRRRRR There is a 
gentleman at CMS named Andy, who called me when I faxed him the denial, and 
told me he would be calling Florida Health Care. Apparently there is a statute 
(state or federal I do not know but Andy does :o) This statute states that any 
child born with a cleft lip and/or palate CANNOT be denied craniofacial clinic 
by ANY health insurance HMO, PPO, %$# )(&#^# or whatever they want to call 
themselves! But alas I have not heard back from Andy as yet and it has been a 
while :o(  
I have been speaking to Dana, Devon's support coordinator for Med Waiver and 
when I asked her if I ever lost Devon's SSI (which is based on income) would he 
lose his medicaid? She said that NO...he would not lose his medicaid because it 
would be based on his disability and that is something he will always have. I 
am seriously thinking about taking him OFF my insurance (which scares me to 
death)...Nick too (put Nick on Florida Healthy Kids which is based on my income 
and cheaper). But I'm scared. What if Medicaid suddenly gets dumped by our wise 
and wonderful legislators??? Then what would I do for Devon??? I don't think I 
could ever get him covered again???? If Devon were on Medicaid his RX's would 
be paid for...he could be totally on CMS (seeing specialists) until he's 18 or 
21 and even though we would probably have to switch peds I believe we could go 
back to Dr Thorpe whom we LOVE and whom adores Devon (she still calls me every 
little while just to ask how Stinky is doing) as she accepts Medicaid. 
BUT...with Medicaid paying like half what docs charge...less and less docs are 
renewing their contracts with Medicaid...and it's not always wonderful with 
Medicaid either :o( What do you guys think?? It would also make it easier to 
get equipment (although he doesn't need alot these days). At present I get 98$ 
a week taken out of my check for the 2 boys and myself...Joe has no coverage. 
If I did this I might be able to afford to put Joe on my insurance and have 
something for everyone???? Anyone's input/advice would be greatly appreciated 
:o)  
Love,
Penny...devoted wife to Joe and "Mom" to Nick (12 yrs...lover of fudge, 
rollercoasters, Harry Potter, Yu-Gi-Oh, Fishing, Legos, Popcorn Chicken, Pizza, 
cheese sticks, chocolate icecream w/ovaltine sprinkles) and "Mommy" to Devon 
(AKA-Stinky Boy, The Chief or Devonrude...Lover of Bear, Elmo and the Muppets, 
Barney, Blue, M&M's and food in general, 7 1/2 years old (6-15-95) !!! Full 
Trisomy 13 w/balanced translocation 5 and 13)...Trooper...our newly adopted 
child (our infinitely patient and loving 3 year old male yellow lab...adopted 
into our family 12/13/02 :o)...KC (the feline child...Brat gained her kitty 
wings 7-09-02 she was 16 years old +), Snitch and Lil' Dude (Nick's turtles :o) 
:o) DeLand, Florida
Meet our family at http://www.trisomyonline.org/victor.htm  (Compliments of my 
dear friend Karen!
And last but not least, check out the homepage I made! 
http://www.geocities.com/penvic4/Penny_sPage.html
The stone that was rejected by the builders, has become the cornerstone (Psalm 
118)

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

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