Tuesday, April 5, 2016

Benefiting a Bureaucracy: Front Page News

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After a really difficult night trying to troubleshoot Noah's difficulties and sleep problems all I wanted was an endless cup of coffee with almond-vanilla creamer and the hottest shower I could find to tranquilize my raw emotions and my soothe my tired body.  I just was hoping to get through the day, as I anticipated having to quickly draft and file my response to Noah's CCB who filed an Exception to Initial Decision in an attempt to override a Judge's Order to provide adapted sensory clothing to Noah. I couldn't shut off all the wandering thoughts in my mind.  Trying to troubleshoot and figure out how to fix things that are so much bigger than I am.  And of course when you're focused on other thoughts you quickly forget you already washed your hair once, so you wind up coming out of a shower extra squeaky clean. 

Chris rushed into the bedroom waiving a paper at the shower door.  "Did you know you are front page news?" he said.  I thought he was kidding.  I wiped the water from my face that camoflaughed frustrated tears and took my hands to clear the condensation on the glass door to see that he wasn't at all kidding.  I was aware that a story was being published in the paper but I had no idea we were making front page news.  Or even had an additional 2 page full spread on pages 10 and 11...

My soul felt this sense of relief.  Not because the storm or fight was over.  Not because this publication somehow erased all the difficulties, problems and denials coming Noah's way or solved the fact that government agencies are making money off of Noah and children like him and that there is no CCB transparency.  But because finally people would be made aware of what is happening not only to our family but so many other families as well.  This article is a conversation starter... the first piece of giving validation to our voices, our pleas for help, and our continued fight for justice for our children with disabilities.  I am so thankful to the reporter who wrote this article and who gave us an outlet for our voices to be heard.

I almost withdrew from speaking to the press on several occasions.  I already knew Noah had been targeted as a result of me advocating for him and for other families.  And I knew that speaking out would make it a million times worse.   Our advocacy parent team needed a family to come forward and deep down I knew staying silent wasn't an option. There are so many parents in the background that are fearful of speaking up, and someone needed to find bravery and courage, so I reconsidered and made the decision to speak to the media and The Denver Post journalist.  I always encourage other parents to come forward.  So many families share their difficulties with me, seeking guidance, support and help knowing that I'd go to bat for all their children because I care more than most people would.   There are power in numbers and I think with time - especially now that the story has gone so public that families will start to feel more comfortable and confident about coming out from the shadows and speaking and telling their stories too.  I've already seen it happening in the last forty-eight hours. 

And those who don't have children with disabilities are asking real and valid questions:  Where are our tax payer dollars going?  And why aren't these programs helping those they're designed to assist?  And who is looking after the safety and well being of our disabled community?  The public has a right to know.  And parents advocating for their children have a right to know.

I of course was already infuriated over the filing of an Exception to Initial Decision.  The State doesn't have to file these things, it's discretionary on their part and simply a method they have to overturn a Judge's ruling.  It's a disgrace that this is even legally allowed.  I also don't buy the State's rationale that denials are necessary because their own rules are vague and that they need a Judge to clarify "cloudy" guidelines.  If that were in any way true then there would be no reason that an Exception to Initial Decision filing should even ever exist.  I also find it unacceptable that the State thinks that appeals are justified just to make a family clarify their own rules.  Most families won't even pursue a denial into the appeals process.  It is a confusing process for most of them, they lack the time to pursue it, and they feel defeated knowing even if they do, the State will just overturn whatever a Judge rules anyway.  In their minds it's a waste of time.  Which is exactly how the State likes it.  They much prefer easy wins and denials without a parental fight.  Means more money in their pockets... and less they have to pay out to help those with disabilities.

And Community Centered Boards and the State talk a good game - but none of them means it.  I'd love to see them put the money where their mouth is.  Of course I flooded multiple email boxes over the weekend with Motions, Replies, Orders, and Responses to the current denial issue for Noah.  The State doesn't even have the courtesy to respond... not with even something simple like we are in receipt of your email, we'll look into it... nothing.  Not a peep.  A tad rude, but expected.  I'm sure I rocked their world with a headline article and Monday morning they were working on damage control.

SB-38 (The proposed transparency bill) made it out of the Senate and is now in the House.  This is fantastic news.  We are one step closer to forcing CCB's to undergo a mandatory financial audit of how they are spending $325 Million dollars annually.  I suspect they are certainly hiding something if they are paying lobbyists and a DC attorney.  And one has to wonder how many thousands of dollars they are shelling out to fight transparency.  Remember those who have nothing to hide... hide nothing at all.

The State didn't give me a whole lot of time to file a Response to their Exception to Initial Decision which forced me to write it in a day and mail it certified mail overnight to make sure I beat their deadline.  I find it so unbelievable that I have to fight this hard for benefits that are outlined within Noah's Waiver as a covered benefit.  Deep down feels like a futile fight.  But at this point it's about documenting the true nature of what is really going on.  I'm not about to roll over and play dead and make this easy for any of them.

The Denver Post article can be found here:


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