Monday, May 4, 2015

The Unfair Fight

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Noah's appeals forms staring at me...
They have been now for 3 days.  My deadline May 27th. 

The disturbing paragraph in his denial letter has me stewing:
"If you disagree with the proposed action described above, you may appeal to the state and have a hearing with a State Administrative Law Judge.  To continue your current services you must file an appeal by the effective date above.  You should be aware that the State of Colorado and designated case management agency may attempt collection or seek to collect repayment from you for all benefits you received if you lose the appeal."

I've appealed before on Noah's behalf with Medicaid, this would be the first appeal under his CES Medicaid Waiver.  Same process with the exception that it comes with the above "warning."

What do I even say?  I have all these feelings and thoughts and they're all racing.  First, I feel it's a tactic designed to discourage any parent from challenging a decision.  Two, I read it as a threat.  You appeal, we'll find a way to come after you.  Even if I win, (because I've won before), Medicaid can file something called an Exception to Initial Decision, which overturns a Judge's Order that granted your child what was denied.  So they know that in the end no matter what (even if you win before a Judge), they can find a way to force you into losing.  And one has to wonder if I'm appealing for disposable pillowcases that are likely valued under $200, what will they try to collect in the even of a loss?  All of Noah's $37,000 allotted funds (which I'm sure would be super convenient for them given that there is a large financial stair lift request before them), or attempt collections against a special need family that has NOTHING to their name, and then garnish wages or put a judgment on their home?  Over pillowcases?  You would think no one would be that cruel or step that low right?  Think again.  I've learned that no one is my corner, and my back is always up against the wall and I'm constantly swinging.  If someone can use you as an example to discourage others from the pursuit of justice (hence the already $340,000 legal judgment against us) then they will.  They will do anything and everything to silence you and squash you like the little bug they feel you are. 

And in the middle of all this bureaucracy how is this all really serving children with special needs?   Deny help, then threaten the parents that if you appeal their denial to help your child, they come after you for money.  All these children and adults without the promised benefits that are due to them.   I am beginning to see why I am the exceptional fighter - because most everyone else doesn't pursue it.  They know it's futile.  They are scared - and likely for valid reason.  After all I am living proof - the cautionary tale. 

What kind of message do I send to everyone with a special needs child if I tell you to simply give up?  Give up because things are so much bigger than you can ever be.   But maybe that's what I need to tell you.  Maybe I need to say do what you can to protect yourself even if that means that your child will do without?  I don't know.  I feel like I'm sitting on the fence between wanting to fight and knowing it's impossible - seeing this incredible injustice without the recourse to fix any of it for myself, my child or anyone else out there walking my path.  Maybe my advice to everyone needs to be don't fight because you can never win.

The only thing that remotely brings me comfort is knowing that I am not alone, when another special needs parent reaches out and says the same thing is happening to them... I wish it wasn't happening to any of us.  I wish I had the power to change it for the better.  But I don't.  I am no one important.   My voice is not big enough.

"Life is filled with unanswered questions, but it is the courage to seek those answers that continues to give meaning to life. You can spend your life wallowing in despair, wondering why you were the one who was led towards the road strewn with pain, or you can be grateful that you are strong enough to survive it."  J.D. Stroube 


Noah's Miracle by Stacy Warden is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.