I seem to be stuck in what feels like this endless fight with Medicaid for a piece of durable medical equipment, the Krabat Pilot Crawling Device. A device that was endorsed both by Noah's primary care provider and therapist. Yet Medicaid has waged this war under the heading "medical necessity." Forcing me to pursue a appeals trial with an Administrative Judge, with a successful win, only to have The State Department appeal Noah's win and file an Exception to Initial Decision. Which required them ordering a copy of the transcript of the hearing in order to try to convince the Judge to change his mind and again deny Noah the Krabat Pilot Crawling Device.
I received The State Department of Health Care Policy
and Financing's Exception to Initial Decision in the mail a few days
ago. There are so many aspects of having to fight for Noah that stir
up so many emotions. I go from mad to sad and back to mad again all in
less than sixty seconds. I have moments where I fantasize about
opening my front door and screaming at the top of my lungs to see if
anyone will hear me. My mind then wanders and I ask myself over and
over how I can stop this madness. How I can change this so that no
other parent ever has to experience what I am going through? The State
Department expects me to raise the white flag. Surrender and just give
up. I know many who would have done so long ago. I know no one would
blame me for walking away.
But then I realize that I have to push
my emotions, my anger, my sadness, my tremendous frustration, and my
exhaustion down to the depths of my soul so that I can move forward to
advocate. I know that I am not an effective advocate if I allow my
emotions to take over the goal. And the goal is providing for all of
Noah's needs. So I separated my anger in order to draft a Response to
the Exception to Initial Decision that was factual, direct and to the
point, leaving out the all the feelings that swirl feverishly in my mind
and heart. I spent two hours away from my boys in order to draft a
response for the child who has no voice. It's hard for me not to view
the State Department as an enemy. They have forced me to fight since
October of 2013 for something my child needs. Even with a successful
win, waiting on a durable medical order could take months and push this
entire process from start to finish to a full year. One full year that
Noah had to do without something because I had to fight for him. A
lost year that he could have made progress learning to crawl. I lost a
full year. That is what hurts the most. That I lost time for Noah
because an agency forced my hand to fight.
This was my response to The State Department of Health Care Policy and Financing's Exception to Initial Decision:
Appellant, Noah Warden represented by mother Stacy Warden, hereby submits
the following response to The State Department of Health Care Policy and
Financing’s Exception to Initial Decision:
Appellant finds the State Department’s assessment of Exhibits admitted is
inaccurate. The State Department filed and admitted Exhibits A-E. Exhibit E was
given to the State Department by the Appellant and contained two documents. One
was a recommendation from XXXXXXXXXXX (the Appellant’s Therapist) and
a recommendation from Dr. XXXXXXXXXXX MD, (the Appellant’s Primary Care
Provider/Doctor). Exhibits F, G and H were tendered to The Court by the
Appellant and copies to all parties were attached to the Notice of Hearing in
this case. Furthermore, there were no objections from the State Department to
admitting Exhibits F, G and H.
Appellant likely should have numbered Exhibits rather than using
alphabetic identification, but understood that the Court was streamlining
Exhibits for easier reference.
Although the Appellant did not have the opportunity to review the requested
transcript in order to file a Response to the Exception to Initial Decision,
Appellant disagrees with the assessment and contradiction to Findings of Fact
#2, and #4. While testimony from Appellant’s mother seems to be accurately
explained, the Appellant’s physician recommended the Krabat Pilot Crawling
Device would be suitable for the child both Exhibits D and E. In Exhibit D:
“The following equipment is medically necessary for Noah.” And in Exhibit E:
“Noah Warden has cerebral palsy and is unable to crawl. He would benefit from
the use of a crawl assist device. This device will help his gross motor
development and upper body strength and development.” If the Appellant’s
physician felt the piece of equipment in question was inappropriate, a
recommendation of medical necessity would not have been provided.
Additionally, the Appellant is disturbed that the State Department offers up
testimony that was not given nor made medical fact suggesting to The Court that
approval of such device could cause further injury to the Appellant. “The
Appellant will be placed in a negative position and can add additional harm to
the Appellant with the use of the Crawling System.” There is no documentation
to support such an absurd assumption, nor testimony offered in the transcript
discussing any potential harm to the Appellant.
The State Department indicates that they do not dispute the information from
the Appellant’s physician. If that were the case then there should be no
question as to the medically necessity, as it is clearly outlined by the
Appellant’s physician in not one, but two admitted Exhibits. The State
Department indicates that they do not dispute Ms. Warden’s familiarity of her
son’s conditions, yet contradicts that statement in challenging her assessment
of her child’s head, neck and trunk control and provides an implication that
she is pursuing a less than safe device for her child.
Appellant further takes issue with the suggestion that the Appellant’s
mother has no training, education, knowledge or experience in determining if
her own child’s head control is adequate enough for the device. The State
Department had the opportunity to cross-examine Ms. Warden as to her
qualifications and failed to do so. The State Department has no knowledge to
represent to The Court what the scope of her qualifications may or may not be.
To imply to a Court of Law that a parent of a child with special needs requires
formal training, education, knowledge and experience in recognizing appropriate
durable medical equipment is a bold move. That statement goes way beyond the
scope of determining medical necessity. Additionally, The State Department did
not question whether or not the equipment trailed shared similarities or
differences to the Krabat Pilot Crawling Device and is attempting to create a
record that doesn’t exist.
Appellant strongly disagrees that the State Department has sought out the
most straightforward approach to establishing medical necessity and in fact
feels the State has deliberately drawn out approval for this request, incurring
unnecessary costs, now including a transcript of proceedings.
Based on the information presented, Appellant requests The Court deny the State Department's request to overturn the Court's decision and that the Court's original decision to grant the Appellant the Krabat Pilot Crawler Device stand.
And now I just sit back and wait for the Judge's decision while wishing that there was a better way to pursue help for my child. I dream of a day when special needs parents don't need to fight so hard.
Noah's Miracle by Stacy Warden is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.