Wednesday, December 3, 2014

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!

Saturday, November 29, 2014

You Have to Fortify!!!

Game nights amongst the Stewart women and their men are quite entertaining.  The men seem to be under the misguided impression that it is all about strategically and ethically dominating the score board; the ladies, not so much.  The ladies’ objective is always about cheating with just enough suspicion to antagonize the men while avoiding any concrete evidence to satisfy their accusations.

We don’t even care if we win as long as someone on “Team Woman” wins and we have the opportunity to watch male forehead veins pop out.  I wish at this point I could say that I’m not proud of our behavior but, in fact, I am quite proud of our escapades and have giggled with pride while writing this blog.

Our silly men think that not all games are meant to be “team games.”  My favorite reaction was from my husband when a fellow man asked what we ladies were giggling about.  Wes said, “Who knows.  They probably cheated again.  You can’t play a serious game with them.”   I speak on behalf of all the Stewart women, “We deem ‘Serious Game’ to be an oxymoron!” 

Our game play is most disturbing to my husband when we play a game of Risk, an unmercifully long game.  We don’t even have to cheat.  We just move from man to man ganging up on him until he or we are out of the game.  Spoken like a former Army Sergeant, my husband will say with a vein popping sigh, “You can’t just attack, attack, attack!  You have to fortify! You have to FORTIFY!” 

He is right.  As we attack, we inevitably destroy our army in the process.  Remember though, our intent was to promote success among Team Woman rather than to be the individual winner.  We don’t really care if we destroy our own strength in the process.

All of those memories were stirred, along with a life lesson, when I heard a speaker say, “There is something inside of women that fortifies us in the face of frustration, in the face of failure, in the face of fear, in the face of disappointments.  All of a sudden we bounce back again.”

Isaiah 40:31

“But those who wait upon the Lord shall renew their strength; they shall mount up with wings like eagles, they shall run and not be weary, they shall walk and not faint.”

Those fun memories reminded me that in the journey of special needs parenting, I have to step back and make sure I’m only fighting the battles that God has called me to fight.  Alone I’m outgunned by Satan, by the insurance company, by the school, by fatigue, and by far too many demands to humanly meet.  I have to take time to sit in His presence and fortify my strength, hope and faith.  As I do, He fortifies me to the point of being able to do all things through Christ who strengthens me!!

In the words of Sergeant Howell, “You can’t just attack, attack, attack.  You have to fortify!  You have to FORTIFY!!!