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12.19.2013

VENTING POST.


It's been awhile since I've had a vent post so I think it's ok if I do one once a year! So, we FINALLY found a therapy that works for Cole (ABA therapy) and he is in an AMAZING program right now. Since starting it back in July, he has learned to sit in a chair until we say he can get up AND this week he TALKED!!! Yes! TALKED!!!  He said "daadeee, Weese" (daddy, please)...then "thaaaats" (thanks)...and of course "Go Cole" after (cuz he likes to cheer his self on!) ....ya, we pretty much fell out of our seats & shed some tears!!! 

Which brings me to my venting....we finally found something that is actually working for him.  BUT, it's only a Pre-school aged program...and thankfully we haven't had to pay for it.  It's pretty much the only program in our state that does ABA therapy at no cost.  If we do ABA after this program (which ends in June for Cole) we would have to pay out of pocket $700-$2000 a MONTH!  We don't get ANY SORT OF HELP from the gov programs...we actually qualify because of our income, but a lot of our friends who are on that certain program are getting letters in the mail saying they owe them anywhere from $3,000-$30,000 of back payment because they paid them too much...which is weird because most of them have made the same (salary paid amount) since getting into that program.  So, they are making them pay it back & if they can't, they garnish their wages.  It freaked us out enough to decide we wouldn't apply for it...which bothers me because both me & my husband have paid into it since we started working at age 16.  The other program that doesn't go off of income that we were hoping to get on (which only includes ABAtherapy & respirate care) has a 7 year wait list!  I've heard from other families that have been on the wait list for over 10yrs.  I've heard our state was one of the worst to live in if you have a disabled child (as far as funding/programs). Our state is also one of the VERY FEW STATES that don't include ABA on insurance plans...meaning if we moved to 35 other states, his ABA therapy would be covered.  But, even if our insurance did cover it...our deductible is $6,000 anyways (which awesomely includes his prescriptions uhh!...so we pretty much pay out of pocket for everything unless its catastrophic). Anyways, I've "heard" that Texas is one of the BEST states to live in if you are disabled...not sure if its true but that's what I hear.  I've also heard other states cover food, diapers, therapy, medical equipment, all medical & housing for the disabled (and income doesn't matter).  ...I would hate to have to move away from friends & family because we can't get Cole the help he needs where we are...but I guess if we have to...we have to.  I'm just curious how it is where you live? (If you leave a comment, I won't post it...I'll just read it).  It don't know if those of you with disabled children feel the same way...but I've accepted the fact that we will always struggle financially...because let's face it...it's not cheap to have a disable child...heck, it's not cheap having a "healthy" child!  ...BUT, I'm not ok with Cole suffering & not getting the help he needs...it makes me sick & I'm not quite sure what to do.  

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