Noah's Miracle : Don't Rock the Boat

The couple of years have been particularly challenging. I suppose it's like the plot twist in special needs parenting. Over two years ago I started to ruffle feathers with my knowledge of unfair practices and mishandling of tax payer dollars designed to assist those with special needs, abuses of discretion and non-profit organizations and third party agencies who are managing Medicaid dollars. My parent advocacy role and efforts led me to information that is concerning. Noah's accounting records didn't add up, his Community Centered Board was reporting he was using much more than he ever had the chance of receiving, they refused to change their accounting records despite my requests to accurately reflect Noah's true expenditures. (Now I never see financial reports for Noah). I challenged practices like CCB's (who manage Medicaid Funded Waivers) that taking a 3.5 percent out of our children's funding for any service or item they approved seemed to be a shady practice (although legal until legislation forces it to be otherwise), and putting it in their pockets. It's the "cost of doing business they say." So your child never has the potential of ever using a full CES Cap out of the waiver since they pocket a portion for themselves. I walked into this meeting with a State representative and the Executive Director from a well known local advocacy group and a multi-page agenda - aimed to make things better for Noah and for other families. Instead what I wound up doing was identifying myself as a "problem parent," who knew way too much about what was happening under the rug.

While I was assured the discussion at the meeting would have no repercussion for Noah - it most certainly did and within less than a week he was given his first denial in the form of an email with a "gotcha last" tone in the mail from the very person we conducted that meeting with. Multiple meetings later with various representatives of the State's Executive Team that manages Medicaid, Noah then found himself with a three person panel unique just to him and no other child in the State to review all of his requests. The team unanimously enters denials now on Noah's behalf.

A year later I grew even less popular, finding myself just by chance as front page news of the local paper, and on a news television station discussing the mishandling of funds and supporting a legislative bill called SB-38. A transparency bill as we called it that would force the State and CCB agencies to undergo public audits to document where all the money actually goes that doesn't come to our kids... one CCB got their hand openly caught in the cookie jar for personal spending. Although I suspect all twenty CCB's across the State also have their own undiscovered cookie jars. Of course within less than twenty minutes after the news stations started calling Noah's CCB for comment, I received a phone message that I still have saved to this day stating that anything and everything - even "anticipated" items that Noah might need would be denied. While SB-38 was since finalized and passed and now even includes a confidentiality clause for parents like me coming forward so they aren't identified and targeted like I have been, it is now a wait and see if any CCB will willingly comply with it. One must raise an eyebrow as to why the State was adamant about parent identification.

I counted the other day the number of appeals I've filed for all of Noah's denials. Eight of them in the last two years, receiving a 9th denial in the mail Monday. This doesn't include the things that were denied that I simply didn't have the fight drive to file an appeal on, or denials that had a very grey area - like the denial to fund Noah's orthotic shoes. EPSDT's code only reimburses them at $43. They cost nearly $400, his CCB refused to pick up the tab saying EPSDT should fund them. A war on funding categories too low to help families like mine both agencies just point fingers back and forth at each other until ultimately it becomes an out of pocket cost. I knew an Administrative Judge could do no more for me should I had filed an appeal because his or her hands would have been tied in that case. A Judge could have done nothing about the low reimbursement category rate for othotic shoes, no more than he or she could force Noah's CCB to pick up the difference. I knew I had no real legal leg to stand on - even though it sucked all the same and that it was a medical necessity.

But for all the cases I believed a Judge could hold their feet to the fire and see that these requests were really medically necessary and within the scope of their power to reverse an unfair denial, I filed an appeal. The cases drag out sometimes for a year or more - especially if the State files motions for continuance with the excuse they can't get their evidence packet against you done in a timely manner. I prevail in all of them. And various Administrative Law Judges continue to rule in Noah's favor. Yet, the State has the power to overturn any Judge's ruling and they continue to do just that. They habitually file something called an Exception to Initial Decision and when they do that it goes back to the very agency that denied it in the first place. It doesn't matter what your reply is - they've already put you in check mate. And they'll sit on it weeks to months before mailing you their Final Decision which always reverses the appellate Judge's decision. Crazy that they can do that right? Renders the appellate process moot.

No one yet though seems to have it on their radar that they need to take this power away from the State. Once a matter enters in a Court setting it should remain there. And a Judge's ruling should stand to be significant.

For years I've shown and documented what has been happening to Noah. What I believe is direct retaliation and retribution for speaking out. Something the State and Noah's CCB do not dispute nor disagree with on any Court transcript. They are using me as an example to show others what happens if you come forward, and to punish me at the same time for doing so. I finally got the attention of Colorado Disability Law Attorneys, who agreed to take one of Noah's appeal reversals and hopefully a second one as well. Disability attorneys are no obligated to take all cases, and certainly I grew nervous when I heard over the phone "we feel you're fully capable of handling things." And yes, while I'm a strong parent and am not the norm because I did work in District Court for so many years before Noah's birth, even the strongest still need help. Disability law attorney services come at no cost I still have to pay a filing fee of approximately $224 each time a case is filed. I've signed promissory notes that I now owe in legal fees. But I'm so desperate for the help I had no other choice. This forces the matter back to District Court - in a Court setting where it should have always remained. But legal cases are slow and we could be at this for another year or so before final resolution, all the meanwhile Noah continues to go without the medically necessary things he needs for his quality of life.

Now I find myself researching the options of filing a Civil Rights Violation and Medicaid Fraud Complaints because I don't know how to get this cycle to stop. The State is showing no signs of easing up on me or assisting Noah who has a high level of needs due to the severity of his disability. No matter who I've talked to with it be political representatives, advocacy groups, the State itself - nothing changes. Legislators say their "hands are tied," State officials say "they'll look into it.," Advocacy agencies - while yes they care haven't been able to find away around this either for me.

It shouldn't have to be this hard. Parents like me shouldn't have to fight like this.

Love,