Noah's Miracle : Broken Bridges

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I have done everything I can to fight to access Noah's Medicaid and CES Waiver benefits. I've coordinated meetings with the State, I've contacted advocacy groups I believed might aid and be by my side, I've consulted with the universe on how to get out of this perpetual cycle of just special needs denial shit, and to no avail. I've had some stupid fantasy that little ol' me could change things for the better, that if I fought hard enough and stood up for what's right and true, then somehow I'd be able to help Noah and all those like him.   But the joke is on me, really. As I've done nothing to build a bridge between government agencies and families.   And I'm rather done. There is no point. Wasted efforts on my part.   No one wants to back me, no one wants to fight in my corner. Even other special needs parents even are flaky at best on their interests to participate in change. I've become a secret confidant for many families who complain openly about a broken system that is failing our children, some sharing their accessibility to benefits where others are denied, but mostly everyone wants me to be the ring leader- just letting me do the work on everyone else's behalf. And everyone plays this artificial game in person - the fake let's work together crap. It's a lie. To your face it's always a lie. They simply tell you what sounds good in the moment to pacify you in a meeting. They are complete and utter snakes in the grass.

After months of fighting (because these things literally are the most time consuming aspects to special needs parenting), Noah received an APPROVAL for sensory clothing. Clothing that had been deemed a medical necessity to assist him and recommended that he needed by a physician. Noah has severe nummular eczema and extreme sensory sensitivities to clothing textures and things with seams as a result of his sensory processing disorder. The medical necessity paperwork was in was then turned over to Noah's county services who sat on it for a period of time (as they naturally do), then they came back with their research figures of comparison clothing from Target and Kohl's, which wasn't even a fair comparison as you can't buy sensory clothing at either store and the material and construction are far different and the prices are reflective of that. Yet, the dispute was that they wanted me to give them a check in an amount they seemed fit that I would pay to them for what they deemed should be my portion. (Which was an undisclosed portion that no one was willing to discuss to this day I don't even have an idea of that that amount would have been because communication between CCB's, families and the State is extremely poor). I challenged that giving any amount of money to the State for benefits they were supposed to be helping Noah with sounded a bit backwards. I attended a State meeting in hopes of "building a bridge" for Noah and for other families walking in my footsteps, the State still APPROVED the sensory clothing request and then asked me to send them how much I spent on Noah's clothing for one year. Which was rounded is $82 because I'm forced to shop at Walmart for $3.88 shirts and pants if I can clothe either of my children.   It was my understanding that by sending them that information they'd deduct my portion of Noah's clothing costs $82, and then the State would assist with the difference. A compromise I was willing to make even though I had evidence that other families and different CCB's did not require families to pay a portion to access adaptive clothing benefits. But I was willing to try to meet them half way, as unfair as I still felt it was.

The mutual agreement reached was really that the State had to assign parental responsibility of clothing costs to some amount and I simply needed to tell them what we spend yearly in Noah's clothing.   But what the State then decided was that they'd assess a 50/50 assignment of costs. So what that means is that sensory socks valued at $75, our portion would be half around $40 with tax and shipping and socks alone on our assessed half would be half of what we're capable of spending yearly for Noah. When I challenged the State's decision of a 50/50 financial division of up to $600 (which would mean we'd have to match that out of pocket $600) ourselves - they came back and decided to change their minds, revoke the approval and enter a complete denial.

With a cute little cold encrypted email message that was essentially a dare... to appeal it.

"You are correct in your assessment that there is “nothing in any written literature that outlines this 50 percent guideline that you've just determined”. Because there are no guidelines in rule the decision must be to approve or deny. I reviewed this request with my Program Services team once again.

After careful re-consideration of your request for clothing to be purchased through the Home and Community Based Services Waiver-Specialized Medical Equipment and Supplies, the request is denied."

A spiteful move and an obvious exercise of abuse of power on their part because I challenged their logic, and pointed out that they were assigning this rule solely to Noah's case when it wasn't universal for other families, which they didn't like and clearly we're in penalty phase. This is how it works when you try every angle. You're still going to come up the loser. And the State will find a way of imposing a consequence for speaking up and challenging them. Does anyone care? Nope not so much. Even other special needs parents talk a good game; "hey were in your corner" But I'm still looking no one is in my corner. They've all given up, and really are using me as the special needs community's mouth piece. I'm the only fool fighting the front lines BY MYSELF with the belief that I can change it all and make the world a better place for children like Noah. But, I'm really doing nothing except spinning my wheels and exhausting my energy and obviously agitating the State enough that they're having a blast denying all that they possibly can for Noah. I'm done trying to building bridges. The State although willing to grant you an approval (with stipulations and conditions that ONLY apply to Noah and no other child in the State) - but wait don't challenge us because we'll penalize you to put you in your place and then change our minds to show you we can and deny it, unless you keep silent and agree to it.

So now what? I'll have to spend hours drafting another appeal and then I get to hope that I get a Judge that sees through this really bad game playing with me and again re-approves it, only for the State to file their "Exception to Initial Decision." which the only way around that is to hire an attorney (even the word attorney gags me at this point in my life as poor Noah has had more represent his interests than I can even count on one hand) not to mention that I don't have the money to pay for a retainer and assume legal costs again to file in District Court once they've done that to me. And we know first hand what it's like to be slapped with a judgment as a result of a court loss. Raise your hand if you think this is all fair? And we are just one family - and one child that this is happening to. There are MILLIONS of us, suffering because of crap like this. And no one hears us. We are so silenced, we are have no where to turn and we're just trying to help our children because there is no other way to do so when the costs of special needs parenting force you into bankruptcy.

There are already other appeals for Noah pending. Noah's appeal for pillowcases for the anti-suffocation pillows that the state APPROVED, but then denies the pillowcases for them to be functional is coming up on September 2nd so I can win to have that reversed too. Because this is how to works. One has to wonder why we even file appeals, as the State has the ability to get around any potential win and Judge's order (which blows my mind that it is even allowed under the Law to so easily overturn a Judge's ruling), so they have no fear. And this my friends is honestly how this all works. And if you don't have a child with severe and extensive disability needs I think you should count your blessings and then re-count them again and again because this his is no cake walk.

Love,