No is Not the Final
Answer to Medically Necessary Treatments
Special needs parents take on
more hats than we ever imagined, in areas that we aren't always naturally
gifted in. I'm so amazed at the strength
and creativity that I have witnessed by so many of you amazing Moms and Dads. I suppose the gift that God gave me for this
journey is that of pleading a case and favor when pleading it.
My first step is to always,
always pray for favor over Ryan and my requests for him. God can go to work on people before I ever
meet them and before they even know Ryan's name.
I've found that the best strategy
is to be diplomatic in pleading Ryan's case, not to mention far less stressful. Many of the decision makers within Health and
Human Services really do care about people, especially children.
In our case, I was seeking
services that were outside the norm, Hyperbaric Oxygen Treatments for a child
with a traumatic brain injury. I really
needed to help them by providing documentation to support any decision to go
outside of what was considered acceptable among their medical peers.
Initially, they allowed us to do
a one month trial. Unfortunately, the
HBOT Medicaid Provider that was selected for the trial was not a fan of using
his tax dollars to cover what he considered to be experimental. He often lectured me on being careful with
other people's money. In the end, he disagreed with coverage and DHHS didn't
have the documentation they needed to decide in our favor, so they had no
choice but to deny coverage. I requested
the denial in writing along with the appeals procedures. Then I began building my case.
Federal law requires the
Department of Health and Human Services (Medicaid) to cover treatments that are
medically necessary for children under the age of 21. In our case, there is a tremendous amount of
evidence to prove that Hyperbaric Oxygen Treatments (HBOT) are helpful for
individuals with brain injuries; however, there are also many medical
professionals who are against it. We
needed to seek out credible witnesses and cases.
We found cases where parents in
other states, like North Carolina and Florida, had won an appeal for
coverage. We also found clinical trials
in Japan and Israel that documented improvements in patients with seizures
(Japan) and patients with traumatic brain injuries (Israel).
We also documented Ryan's
personal response to HBOT. Though he had
improvements in many areas, we chose to focus on seizure control since that is
the hardest to dispute. We maintained a
log that detailed improvements and seizure control during HBOT sessions, and
the lack of seizure control in the absence of treatments. Additionally, during one period there was an
alarming progression of seizures. At its
worst, he was either sleeping or having a seizure. He missed more than 45 days
of school - without HBOT.
We asked medical professionals
that work with Ryan to write letters detailing why they felt HBOT was "medically
necessary" for him. We obtained
letters from his neurologist, physical therapist, speech therapist, and
occupational therapist. We also made
copies of Ryan's IEP that noted improved attendance and performance following
dives.
We made copies of all of our
documentation with an index to make it easier for the hearing officer to
follow. We also provided a video of Ryan
having a seizure and asked that it be watched during the hearing. In the end, the hearing officer found our
evidence to be credible and found in our favor.
Unfortunately, our request had
been for one more month of HBOT, for further review, rather than for ongoing
treatments. Therefore, winning the
hearing meant that we really just won one month of treatments. After that month of treatments, the
Department of Health and Humans Services approved six more months HBOT. They also required that we (Mom and the
neurologist) provide monthly logs and progress reports by the 5th of each
month. At the end of six months, we must
provide an additional EEG and final report, which they will review to determine
their opinion as to medical necessity.
If they say no, the appeals process will start again.
The follow-up EEG is scheduled
for December 2014 and due to DHHS in early January 2015.
Praying for
yes! God bless!
