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“Them there is fightin’ words!”

Written By: teamcharliebear - Jul• 13•14

camp 2014My head is spinning. This is INSANE! I have driven myself almost completely crazy, at the very least to the edge of death by exhaustion (yup, pretty sure that’s a thing).  Just to get this child the help he needs, and now….? We are losing his insurance …AGAIN!  Why? Because me getting married somehow made him less disabled.  Try explaining how ridiculous  that sounds  to the person on the other end of the phone at the local office will only get you a “you’re preaching to the choir, sweetie”.  I understand if we can no longer receive a check due to the household income being raised now that someone is actually employed that lives here! The Horror!  However, only TnCare Select (the disability insurance) covers ALL the treatments needed for autism. With regular TnCare (the stuff Obama did) depending on the branch,  some things are covered. Speech, Occupational and sometimes Physical therapy as well, but not Behavior therapy (ABA). Never that! Why would anyone want to cover the one therapy that addresses the biggest hurdle in people with ASD?  That’s just crazy talk! Of course, that’s provided he is still eligible for TnCare at all now.  If he can get back on that my weekly total of out of pocket expenses will be $240..at best. If  he doesn’t get picked up, then they won’t backdate the therapy he is receiving now. Meaning I won’t get reimbursed for the $225/week I will spend on the OT and Speech until then.  For those playing along at home that equals $465/week in therapy. Did I mention he is also in summer camp. Another $250/week which is NEVER covered by insurance and he was using his disability, plus the last tax income I was likely to ever get.  Meaning that, I like many other mothers in this situation, simply can’t work. Yet somehow, I’m always on the clock.

To add insult to injury I just started a nonprofit organization with the creator of the site Cartwills.com for just this kinda thing. Naturally, there are no paychecks for us, and Charlie isn’t a candidate for the funds we raise. That would be a conflict of interest. Besides, we had insurance, and there are plenty of kids that need treatments, but can’t afford them. Why? Because Tennessee keeps refusing to join the other states that have signed a mandate to cover these treatments for our kids. They somehow refuse to see that by denying these treatments to those that need it now will only cost them more in the future. Those that miss the early intervention phase have a hard enough time pulling our kids through the muck and maze. I know, because that is my life every day! I’m not alone in that, and the other kids and parents know something has to change or our kids with ASD will be adults with ASD.  Then what happens? I’ll tell you….

The parents take care of them until they die or physically become unable. All the while, everyone is drawing SSI now. The folks for being retired, and the child with ASD has been drawing his check since 18. When the caregivers die this person… This loving soul locked inside it’s own mind all these years.  This human being that was denied the treatment that might have improved their quality of life.  If only they had been given the chance they could be living independently. Perhaps even holding a job…maybe even testing off the spectrum completely!  No, this person with ASD will be supported by the state in a “home” of their choice. Some nursing home that they will have to pay for, and he or she will be getting the best care the least amount of money can buy.

Yup, that makes total sense.

We had insurance that covered all his treatments for a glorious six months. He has had insurance for one year of his life other than that and it only covered part of his treatment. Even still, one and a half years total is all that he has ever had and he just entered his third year of treatment.  I’ve spent every dime I use to make on his treatments. We sacrificed food, clothing and if my now husband(then boyfriend) hadn’t stepped in we would have been homeless too! I’ve been through three cars and 2 jobs to drive him to Jupiter and back for appointments that are only adding on more appointments with different doctors and additional therapies.  It’s never going to end, and if the state keeps ignoring the need it’s also never going to get better either.

I’m not sure I am willing to accept that.

Bill Jones would’ve said, “Them there are fightin’ words!”, and I gotta tell ya…He’d have been RIGHT.  These people don’t wanna tangle with the likes of me. Yet, by the looks of it,  they are going to find that out the hard way.  I always knew at some point I was going to have to storm the castle so to speak. I reckon it’s  about that time.  Sadly, I’ve never learned to pack light and you better believe I’m coming! I’m bringing an army with me when I do.  Eddie Murphy, another fine man (of no relation that I’m aware of), tried to tell you… “I didn’t wanna do that, Baby. You brought that on Yo’Seff!”

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