Noah's Miracle : When the Fight Song Comes To An End

If you've been reading about Noah for years you'll likely know that I've fought some really hard battles over the years for Noah. Some that would leave any other person incapable of standing and moving forward. I kid you not. My resilience for the struggles, hardships and injustices are something even I am in awe that I've been capable of getting through - and even with the perseverance and spirit in which I do it.

But there comes a time, I think when you have to really reflect on the success of the fight, and even more so what the fight has cost you. I suppose I thought at some point I could turn pain into purpose. That was always my goal. I didn't want others to suffer in the ways that I have had to, navigate the hardships in which I've had to - to heal and fix a broken system that leaves children with disabilities lacking in all the things they need to better their quality of life - all of it. I had this illusion in a way that I could be everyone's hero - including Noah's. I'd be able to reach my hands in and help - make a positive difference and inspire change.

The reality just isn't like that.

Let's back up a little bit and I'll tell you how I've come to my new epiphany.

The beginning of this year, I've had three appeals stacked up for Medicaid and Medicaid Waiver denials thrown in Noah's direction. I've fought a long while from start to finish. From the time of initial funding request to conclusion of events often takes close to a year to obtain final resolution of a matter. This isn't simple, even for me who has a strong legal background. It is time consuming, it sucks all the energy out of you, and you know most generally your efforts will be futile anyway but you carry on because your motherly instinct says giving up because your child depends on you - isn't an option. Trust me three hearings in less than ninety days time is just crazy.

The first appellate hearing centered around a request for technology called VocalID. It would allow Noah not to have a pre-recorded digital synthesized robotic voice for his AAC device. All devices like Noah's come with the standard little boy voice "Josh" and all children using AAC devices that have "Josh" sound the same. VocalID would have customized his own individual voice using his personal vocalizations combined with his brother's donated voice to give him the voice of what he would sound like if he were a verbally speaking child. Noah had doctor's recommendations and therapist recommendations for the technology all very strongly written that outlined his safety and need for having this feature on his device. His Medicaid Waiver approved it, but because Noah has gone over $10,000 funding in a five year period, requests in certain categories (like assistive technology) must be reviewed and escalated to a State level. As such the State disagreed with the Waiver's approval and a three person panel (made just for Noah's requests) ultimately entered a denial. The software retails for $1,499. I battled it out - the State asked for extensions of court hearings, claimed they couldn't get their evidence packet in on time - stretched it out for nearly a year. I was hopeful an Administrative Law Judge would be able to see through these games that the State keeps playing with me. Convinced myself I'd prevail because I always do - because there is no other option not to. I cannot fail my son.

However, the Judge in this case decided that he wasn't going to essentially play "middle man" or second guess if the State department's denial was in error. The Court's position was that it is the State's power of judgment and discretion whether or not to grant an exception to approving something if a child has exceeded a $10,000 cap during a five year funding period. "The ALJ concludes that the "shall" language concerning the $10,000 limit is controlling for this review. Because the Appellant (Noah) has exceeded this limit, the VocaliD is not approved. Whether the limit "may" be exceeded is an independent decision of the Operating Agency that the ALJ will not second-guess under the circumstances of this case." The decision to deny the request for the VocaliD is therefore upheld.

So, we now have a Court that says they won't intervene in deciding if a denial was entered in error regardless of meeting the burden of proof to specify otherwise. If any Judge takes the position that they'll defer to the State's judgment rather than their own - then it makes the process that isn't on a fair playing field for children and families. The Court is now stating it will stand behind Medicaid's decisions, regardless.

I had another appellate hearing January 30th. I worked in the legal system for over a decade of my life before Noah's birth. I'm great at deciphering the tone of hearings, and knowing immediately if there is a favored side or position in a case. The same was true even with Noah's medical malpractice case. It was evident that the Judge in that matter favored the Defense, even so much as not finding it a conflict of interest to allow a prospective juror to remain on the jury panel in Noah's case, even though his wife delivered the doctor's baby in which we were suing. There are lots of reasons that Judges play favoritism, sometimes Judges would even personally discuss that favoritism with me behind closed doors - perhaps they went to law school with someone and maintained a friendship, perhaps their children played together, or sometimes it wasn't really all that subjective like they didn't like what a defendant was wearing or how someone presented themselves.

The last appellate hearing, the State called in their top expert witness to go against me - the senior director EQ Health - which is a third party agency that Medicaid contracts with to make determinations on eligibility and requests. She certainly had moments when the Judge should have checked her back in line and he didn't, yet he was quick to correct me on small courtroom formalities. It's also curious that the same Judge has been assigned to the last four of Noah's cases. Something that usually doesn't happen docket wise unless someone intentionally assigns it that way. Conspiracy theory? Maybe - maybe not. In any case the odds have turned and they are not in my favor, I know it, I recognize it and I feel it.

I don't expect favorable outcomes from the next two hearings either.

Which brings me to reaching the end of my fight song. I've been a special needs parent advocate for others in the community for years, have pursued legislation, attended board meetings, even gone on local television all in the hopes of shedding light on some very bad things that are happening. It's come at a great price to Noah. When you step out of the box there are consequences and these come in the form of retaliation and retribution. It is real. I promise you that it is. I am living proof of it. The State has labeled me as a "problem parent" and as such has done their best to send me a message.

I was scheduled to offer testimony as to why the Medicaid Waiver rates were unsatisfactory for families March 17th. I've devoted so much of my precious time and energy into things in which I thought I could change. But I need you to hear me when I tell you this: You cannot change it - not by yourself and usually not with the help of others. It is a powerful system and one that will never care to listen. Your testimony - your advocacy at these matters aren't to take your words into consideration or your story to heart - it's simply to identify you. To have you out yourself as a potential "problem parent." They want to know who to keep an eye on. And I would strongly encourage you to think twice, three times, four times - one-hundred times before putting yourself out there all for nothing. Don't be baited. Don't be like me. Don't let it make things even harder on you and your child with special needs.

So, I've decided after I see my way clear of the last scheduled appeals hearing March 21st, I will not be filing anymore. I've also decided that I will simply be using minimal benefits for Noah under his CES Waiver, and will not put in additional requests for medical items and equipment that he needs. In the end it simply results in a denial and I'm going to save myself the headache. This means the State will get to chow down on likely close to nearly $20,000 (if not more) of unused funds yearly of Noah's Medicaid Waiver Cap. Funding they don't even have to legally account for what they do with if it doesn't go to him. His EPSDT Medicaid a completely different ball-game but yet not exempt from denials either. The hearing January 30th was an EPSDT Medicaid denial for a Mygo Leckey Tour base, the State thinks I should ask for a hoyer lift instead and because I am Noah's licensed Certified Nursing Assistant that my job is to lift him - even if that means lifting him through Target or the grocery store without a wheelchair - as court testimony provided it's optional if I chose to take Noah out in public all Medicaid cares about is meeting his needs at home. Not to mention that Noah's DME, NuMotion, did a tremendously dirty deed and corresponded with the State behind my back and provided a copies and pictures of everything they thought they had provided to Noah since birth to demonstrate to the Court that they feel all of Noah's needs are being met and he needs nothing additional at his age (as equipment he had received at age 2 should still fit). Beginning to realize who's team everyone is on. Something I only found out about because there was an oops in court exhibits and a personal email was accidentally disclosed to me.

There just comes a point in time you have to realize that you're spinning your wheels and going no where. I'm not being successful in helping Noah despite my hardest and strongest efforts - the end result is generally the same - whether I win before the ALJ and the State reverses the Judge, or whether the Judge says he's going to defer to the State for their judgment if they felt the denial was appropriate. Either way I'm losing. It's just how is that loss defined on paper.

And it's evident the denials are not going to stop. I appealed a $100 Wedge Pillow they denied. A $100 Wedge pillow when Noah is allotted close to $40,000 yearly out of a Medicaid Waiver Cap. Ironically because they think I should pick out a medical grade one that will cost them close to a $1,000 instead that also does not have the features Noah needs. I present them with the least costly option and they still snub their noses at me. I ask them for a product called Carpet Saver to prevent Noah's drool, vomit and incontinent accidents from soaking through to the Carpet and they deny it citing it's carpet - even though it's not carpet. It's a foam fabric layer you put over any flooring surface to prevent moisture from soaking through - that retails for about $500 for what Noah needs. Not a break the bank request.

I'm going to find peace with all this, and find more constructive ways to help Noah. God I don't even know what that is going to look like - but, I know where the help isn't, and barking up that tree is futile. So, I'm throwing in the towel. I'm done. The Fight Song has quit playing. May the State and Noah's CCB Medicaid Waiver throw a party and celebrate.

Love,