Thursday, February 13, 2014

The Fight for the Pilot

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Sometimes you just don't know where to start... the consequence to not properly writing a sequence of events as they occur.   This means I have to give you a brief history first before I get to tell you about today's events:

October 29th, 2013:  Noah was denied for an adaptive crawler device called the Krabat Pilot Crawling System.  A request that we had made to better assist Noah learning to crawl, bear weight through his arms and legs, and continue strengthening his arms, and legs, while giving his hips the proper assistance they need.  Noah has tried a product called the Creepster Crawler, and while it comes with a considerably less price tag, the Creepster Crawler suspended Noah from a cage-like frame with a harness offering him really little support for his hips and legs, and didn't really offer Noah the momentum that he needed to propel forward.  The Pilot's design if very different in nature allowing the trunk of child to rest on a platform.

Krabat Pilot Crawling Device

November 15, 2013:  After receiving the Medicaid denial notice in the mail and after speaking with the Durable Medical Equipment provider (DME), I filed my appeals letter and request for a court telephone hearing.  I knew I would likely need to provide an Administrative Judge with additional information to give consideration to forcing Medicaid to fund this for Noah, so I researched information online, obtained a secondary recommendation letter from his primary care provider and therapist, to demonstrate medical necessity.

December 17, 2013:  I receive a Notice of Hearing from the Court indicating a scheduled telephone hearing and and Notice indicating that a Evidence Packet must be mailed no later than five days prior to the hearing.

January 6, 2014:  I receive a call from an individual representing themselves as a officer of the Court, and coordinated a date with me for a telephone conference.

January 13, 2014:  Telephone conference occurred, but it was not with the Court or an officer of the Court, but a Medicaid caseworker, who attempted to coax and encourage me not to follow the Court's Notice of Hearing outlining if I had any additional documentation to support the appeal that I email it or mail it to her immediately so that she had sufficient time to get it to her doctors and experts to refute my information and position.

February 1, 2014:  I mailed my additional information to the Court, ignoring the representative who lied about being a Court employee and tried to coax me into providing her information not in accordance with the Notice of Hearing. (Why on earth would I help them find a stronger way to deny my child something he needs?)

February 11, 2014: I receive the Appellee's Evidence Packet in the mail (certificate of mailing indicating 2-7-14).  Containing Exhibits A-E, including a CV from an expert who had no experience in pediatric medicine, rehabilitation medicine, or neurology; who resides in Oklahoma and is contracted/employed with a company called APS HealthCare.  This company contracts with Colorado Medicaid providers to offer expert services at hearings to support why a child should be denied something requested through Medicaid funding.  Other Exhibits contained an Aggregate Episode summary, which in short is a series of notes between a nurse, and a doctor for Medicaid, offering their reasoning for a denial, a price guide for the item requested, the letter of medical necessity and recommendation from Noah's doctor submitted by the DME, and my additional letters from his doctor and therapist.

And that brings me to today (February 13, 2014)  The Telephone Hearing:
Hopefully I haven't lost you yet, but I think it's only fair to give you a perspective of the timeline of events on this kind of thing. 

The telephone call was right on time, although there was a few minutes to set up the conference call between a third-way party.  If you have ever experienced a typical judicial hearing, then you can imagine what this was really like.  It's very typical where the Judge asks all parties to introduce themselves into the record, the party testifying is sworn in,  the Appellee puts on their case first, then you have a chance to cross-examine, the Judge asks his own set of questions, and then you basically call yourself to testify representing your child... etc.  (if you decide not to fill out the cute little Non-Attorney Authorization form which indicates no one is assisting you through this process).   Given our current legal bills regarding Noah's case and appeals for his medical malpractice, we know that we are really on our own for things like this - however I wouldn't discourage anyone from finding legal counsel to assist you through something like this.  In fact, think it would be highly beneficial to have an advocate/legal counsel on your side assisting with this process.

This was Medicaid's basis for Noah's denial:
1) Product is recommended by the equipment vendor as "Up to Age 5" (denied that Noah was 2 months away from age 5 at the time of the request)
2) Because they did not have knowledge if Noah had tried the product with success.
3) Because they did not have information if Noah possessed head/trunk control.
4) No knowledge of other products trialed or considered.
(NOTE the denial was denied for NON-MEDICAL NECESSITY).

The cliff notes of the hearing:  The expert admits he has no experience in anything pediatric or rehabilitative medicine and is simply contracted to serve as an expert in this capacity; admits never read Noah's medical files, never met him, knows nothing about him; refuses to answer exactly how much he was paid for his time to review Noah's denial, make a recommendation to the court and testify, just would say only that he is contracted with hourly pay on many cases at the same time and estimated an hour of his time to Noah's denial.  (One can only hope that the cost of his services are less than what it would have been to actually just approve this piece of equipment for Noah).  Personally I take great issue with the fact that you can spend dollars fighting against what a child needs for daily living rather than just granting the request.  Let's talk about wasting tax payer dollars in that direction!

The expert indicates that we had the ability to have Noah's doctor submit additional information after a denial but they failed to do so because the DME (NuMotion) failed to go back to the doctor and request more information.  Which is really typical of most DME's.  They simply lay it back up on the shoulders of the parents to go through the appeals process.  And in fact until today, I didn't even know that they had the ability to go back to a doctor for more information to potentially avoid the necessity of a court hearing.   But between you and me, even if one takes that route and attempts to get further clarification from a doctor after a denial, I'm not sure how successful that avenue would really be - after all when they dig in their heals and decide not to pay for something they stand pretty firm on that unless there is something legally twisting their hand otherwise. The expert even admitted that Noah's doctor's additional letter after the denial didn't change his mind on medical necessity - which is rather proof in the pudding that it wouldn't have mattered if they sought additional information from a doctor prior to us requesting a court hearing.   At least I learned something new for the future - as I anticipate this won't be my last rodeo with fighting for Noah's needs.  The expert tried to use a recent request for an i2i headrest as proof Noah doesn't have adequate head control for the device, although admits in testimony he can't describe the device as he hasn't seen it.  (For those of you who don't know what an i2i headrest is - it's like a U-shaped headrest that goes around the neck and drapes over the child's shoulders.  Helping a child's head stay mid-line.  We are exploring a power wheelchair for Noah and an i2i headrest is needed to aid him driving - which is another blog post I need to catch you all up on, and doesn't necessary reflect the fact that he cannot hold his head up for short periods of time).

I basically offered testimony to the Court explaining Noah's condition, what his head control was like.  That the weight limit for the product is 55lbs which Noah is not close to yet, and that he is smaller than a typical child at age five just due to having Spastic Quad CP, I introduced my articles that I had provided to the Court - admittedly I stumbled through that as I forgot I needed to address and label them as Exhibits, but in my Defense I don't practice law on a daily basis... I did the best I could in the moment.  I tried to offer the Court the best clear picture I could of Noah's capabilities and the potential this product could offer him.  The hearing lasted an hour and a half, the Judge seemed thorough with both sides.  He will issue his written order in twenty days.   Did I do well enough to fight for Noah?  I don't know.  I hope I did.  It's nerve wrecking.  Makes your heart flutter and your palms get all sweaty.  Both from a combination of nerves and agitation that you even have to go through all this for a child with special needs.   In hindsight you always wonder, should I have mentioned this?  Would that information have made any difference?  Did I miss something crucial in cross-examination of the expert while I'm writing down notes feverishly?...

But the point is, whether I won or lost this battle I tried.  I got up today.  And I fought for a little boy named Noah.  And God that's what counts.  I'm not a quitter.  And I'll give my last breath to help this child.  And in the meantime I will wait patiently these twenty days and just say some prayers. 


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