It appears that it's going to continue to be the same song and dance from Noah's Medicaid and Children's Extensive Support Waiver (CES). I do try to give them the benefit of the doubt - no correction - I have given them amble time to redeem themselves. Yet the hole they dig and the divide they place on any type of functional parent/caseworker relationship just burns to the ground time and time again. Eight years in to this - I'm just done being nice about it. I'm no longer entertaining any more artificial interest in how my son is doing, fake chit chat to make me feel and think they're on my son's team, no more believing not one ounce of the fluff I'm fed to stall me in the pursuit of helping my child. I don't do games and that is what this has become.
Right before Christmas I filed yet another appeal before the Administrative Law Courts. That makes three hearings for me in the next forty-five days, and I have another 60 days to file the fourth. And this is just the beginning of the year and all of these requests were from 2016. Can you imagine the trail of denials and appeals hearings that I'm facing this year alone?
I filed the most recent appeal just prior to Christmas. Really the documentation and exhibits so blaring obvious that Noah's Community Centered Board, either has no real understanding of the State's policies, rules and regulations, or they are simply being spiteful. My guess is likely both, but perhaps more the latter.
I answered in honesty because that's the only way I know how to be. God made me a lot of things but a liar was never one of them. I explained that all these years we've fundraised for help. Noah's maternal grandmother has done all that she's been able to in order to help when she was employed, even giving her severance pay to help Noah at they very last of her available resources, we've looked for foundations and grants to assist. It's not like parents like us have any other choice other than to ask for help from foundations, grants, and fundrasisers. The costs of raising a child like Noah out of pocket can be more than a mortgage payment each month - especially when the State is in cost savings mode and doing their very best to withhold funding from your child.
She said that was all that she needed and that one of the missing supervisors from the review team would be in the following day to sign off on the approval and reverse the previous denial. She also was confident that Noah's approval for these requests would come out of the 2016 CES Cap. I was rather relieved because let's face it appeals hearings take up a lot of my time, and the Court's time when it's really unnecessary to do so for something that should be easily approved.
Less than twenty-four ours later on December 28th, that same caseworker calls to say, that they had changed their minds again and were not going to reverse their denials on either item. Kind of like the joke is on you...
Stunned I'm like dealing with a Bi-Polar agency - that just can't get it's shit together. They have the rational that a floor protector that prevents urine, vomit, acid reflux and Noah's drool from soaking through to the carpet or pooling on tile or laminate flooring is considered "carpet" and thereby an uncovered benefit. They clearly don't understand the definition of carpet. Even after providing a detailed letter from the manufacturer on exactly how different his product is from carpet that is permanently fixated to the floor, that you can neither put in the washer or dryer and that doesn't repel things like vomit, drool, urine, acid-reflux.
A $100 Wedge pillow was also requested. Let's just focus on that price tag for a moment. One-hundred dollars. A lot - but not a lot when it comes to special needs price tags. Most adaptive equipment for Noah starts in the thousands of dollar range and I'm not exaggerating. Any special needs parent will confirm that awful prices that are attached to things our children need.
My mother and I found it by chance at Bed Bath & Beyond. We felt it in the store, seen the height of it, and said I think this would just work for Noah beautifully. We came home consulted with Noah's therapist who also agreed it was perfect for his needs. Because Noah has a lot of sensory issues good adaptive equipment matches can be a challenge. It was a win finding a typical item that would work for Noah. Since typical items neither have a DME distributor or a Medicaid Code they have to be sought out through Noah's Medicaid CES Waiver. The Waiver covers items that Medicaid doesn't (or so is the theory behind the Waiver). His CCB/Waiver denied it on the basis that it has a Medicaid code. Even though I provided a letter from his DME representative that states otherwise and confirms what I am telling them to be true. They insist they want to provide a medical grade wedge pillow, that will be hundreds of dollars more, have me seek that through traditional Medicaid, and then the Waiver will hire someone - a personal seamstress to make a custom cover for it that might be agreeable for Noah's sensory challenges. Because that all sounds so much more inexpensive and uncomplicated than just purchasing a simple one-hundred dollar wedge pillow off of Amazon right?
So, after telling me they hadn't changed their minds at afterall, they said they needed more time to investigate their options based upon me telling them that I had received past fundraising and foundation help for items such as these in the past and then maybe they'd reconsider once again. Perhaps they were trying to find a foundation that would assist Noah so the State wasn't obligated to. They after all do their very best to retain as much funding as they can rather than allow it to assist the very children it's designed to. They also wanted to do research and call around and see how other CCB's handled requests of a similar nature.
Today I received another email that they are certain now that they won't change their minds and that the denial is firm. I suppose this is their declaration that their wishy-washy behavior has come to an end. So now we face an appeal on these two items, with a warning that should I win, they'll simply continue to file Exception to Initial Decisions which makes the Appellate process moot.
Yes - can you believe it that the very agency that has the power to deny something also has the power to reverse anything a Judge says? True. It doesn't go back before a Supreme Court Judge or stay in the Judicial System in some way. It goes back to the State Department of Health Care Policy and Financing and they can say so what the Judge reversed the denial - we want it to remain a denial - and when that happens my friends - it's pretty much game over.
With the exception that a family can file the matter into District Court and re-challenge the State. Something I think they aren't prepared for me to do - but I'm so tired of being jacked around that it's likely time to do just that. Until they are penalized for their naughty behavior and called out for their incredibly unfair practices and tactics then this type of thing is going to go on and on until the end of time.
Who knows why they can't pick a side of the fence and stay on it. It could be that I talk a lot about my grievances quite openly and in this circle of advocacy you never really know who's team anyone is on. You may think you've got someone in your corner and confide in them only to realize that they're playing devil's advocate instead. It's also likely a combination of continued retribution and retaliation for me calling them put publicly on local television and trying to draw everyone's attention to the blatant mishandling of State funding that is supposed to be set aside for children like Noah. The world will only turn the other cheek for so long. And as more parents bravely and courageously step up and speak up about what is happening the more it points the finger right at them for literally stealing from these children.
And let's not forget Conflict-Free Management. If you haven't heard of it:
"Pursuant to authority provided by 1915(c) of the Social Security Act, the Department has established contractual agreements about services and supports provided to eligible individuals with Intellectual and/or Developmental Disabilities. Commonly called Medicaid Waivers, the federal government, through the federal Centers for Medicare and Medicaid Services (CMS), provides approximately 50% of the total funding for these Medicaid Waiver services. The federal Centers for Medicare & Medicaid Services passed a final rule (42 CFR § 441.301(c)(1)(vi)) in March 2014 requiring separation of case management and direct services. Colorado must comply with this rule to continue receiving these funds." It's 2017 and they are still not compliant with Federal Law.
Self-policing is a conflict of interest, as well as well as holding true to the definition: “real or seeming incompatibility between one's private interests and one's public or fiduciary duties."
The State hides behind their lack of compliance saying it would be too disruptive to comply. They instead think that they can stay out of compliance by offering what they refer to as "extensive conflict of interest mitigation controls," like giving families "person centered" control over providers. But let's be clear that the providers they offer to us are still contracted, limited and very much under CCB control.
So where does all this leave Noah? Kind of stranded. He has a list of things he needs and I mean the list is growing longer. I don't really know where to go from here. The first line of financial defense should be his Medicaid and Waiver funding. But they are putting families like ours in a position of tremendous financial debt for out of pocket medical, therapy and equipment costs that they continue to deny. And then when they're questioned about where all the unused money goes they say quick look over there it's a bird flying... look at the bird it's so much more interesting than anything that we're doing under the table.
I continue to file appeals, because that is the only way to document the absurdity of what is happening and can only hope that eventually someone in a position of power takes notice.
Love,
Noah's Miracle by Stacy Warden is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.