Game ON!

So LOTS of you have asked what all the situation with insurance is, and rather than explain it 100x over, I figured I had just recently messaged a friend with an update, and it's pretty comprehensive of the struggle we're fighting, so I figured I'd just copy and paste it here :)  So... here's the news, the frustrations... and the blessings in the middle of the storm.

So it's a REALLY long story, but I've realized now that the only way we're going to get people to help us fight is to really tell the whole thing and see if anyone we know can help, or may know someone who can help us. So here goes...
As you know, we've been struggling with medical issues with Kai for over 4 years now. For 4 full years, he was put thru constant test after test to try to figure out what was wrong with him and what was attacking his muscles causing constant struggles for the poor guy. We have had an incredible team of doctors and specialists at Duke that have been walking this road with us for 4 full years now, and finally, Jan. 4 to be exact, after waiting 8 months for test results from a VERY highly specialized and expensive test, Kai was diagnosed with Ataxia with Oculomotor Apraxia Type 2 (aka AOA2). This is an INCREDIBLY rare disease here in the US, with only 2-3 specialists in the world who have knowledge and treat patients with it. (so back in March I had to fly out to CA with Kai to see the leading specialist in AOA2 that is here in the US... there is NONE closer than that!!)
Three years ago, when his condition began to progress more rapidly, his team of doctors started him in therapies. First, it was just physical therapy, but within a very short time, it progressed to occupational and speech therapy as well. When all of this first began, Kevin's job was really struggling and since he's commission based salary, he hardly made enough to make ends meet so we qualified for Medicaid. We realize now how much of a blessing that was. We never had ANY trouble at all with both doctors or therapies being covered. But as his job got better and he started earning a bit more, we slowly edged out of eligibility from Medicaid, and about 2 yrs ago now, we became fully dependent on Kevin's work insurance, which is United Healthcare. So... for the past 2 full years, I've been fighting insurance with fight after fight to get them to cover various expenses and specialists that Kai has had to see, and tests that they have had to do. Well, this year has been no different, but this year it's become a nightmare. When Kai's doctors at Duke figured out his diagnosis (finally) back in January, they quickly realized with their research that the ONLY treatment for his condition is therapies on a daily basis to try to keep his muscles strong for as long as possible to try to help slow the inevitable progression of his disease. In fact, one of the specialists said that IF I had not been diligent in getting Kai his therapies every week for the past 3 years, Kai would most likely already be in a full time wheelchair! So, it's definitely a necessity, esp since there's no medications or other treatments known to help slow the progression. His Duke team prescribed THREE of each therapy every single week! Yes, 3 of PT, 3 of OT, and 3 of ST. As you know, Kai is not an only child, so logistically, if the therapies couldn't be done at our home or his school, there's no way that I could get Kai there for 9 therapy sessions per week, so for now, we have stuck with 1 of each discipline per week. Up until 2 weeks ago, his therapy team has been amazing and had been doing all 3 disciplines on the same night to try to help me minimize the amt of time both traveling back and forth, as well as sitting at therapy, so we were doing a long 3 hour session of PT, OT and ST on Thursday evenings. Well, 2 weeks ago, apparently United decided to contact Abilitations (where Kai does all his therapy) and tell them that effective Jan.1, per their new contract, they were not going to cover multiple therapies done on the same day, as well as that Kai had a MAX of 20 PT and 20 OT visits per year total, and that was a hard and fast rule, and they were not going to cover a single therapy beyond that 20 visit max and it would be 100% out of pocket for us... $120 per hour per therapy! Oh yeah, and add to that they said he reached that 20 visit max back in March... so not only would they not cover anything beyond that, but they were only going to cover 1 of the 3 sessions he had per week (since they were all done on the same days) dating back to Jan... 6 months! 
So... I've contacted United more times than I can possibly count over the past 2 years, and EVERY time they have told me something different on how to appeal and how to fight, etc. So this time has been no different... only this time they also said that they have NO record of ANY of the other appeals I've filed over the past 2 years (and there's been at least 6!!)!!! Last week, they transferred me to an "upper level escalations management", who again, told me something totally different but also said he finds no record of ALL the other appeals I filed over the past few years regarding his therapies and that I need to get new current letters from all Kai's doctors, as well as current therapy notes and letters, stating his need for additional therapies beyond the 20 max. He then stated there's nothing he could do about the multiple therapy sessions in a day not being covered. As of last wk, I am now having to take Kai to 3 separate therapy sessions on 3 separate days of the week, not to mention the 4th counseling session that he now has to go to bc of all the stress this is putting on the poor little 9 yr old, that insurance is also denying payment coverage for. 
So today... when we arrived for his 3rd therapy session of the week, I was greeted with a $120 bill that I had to pay up front, as well as news that they had just gotten yet another call from United today also stating that effective immediately they are also not going to cover any long term therapies for any of their clients. Kai's disease is a neuro-muscular degenerative disease, that is only going to require ADDITIONAL therapy sessions as time progresses. There's nothing short term about it. It's a lifelong deabilitating disease. 
The thing that sickens me most is that if I were to lie and file for Medicaid as a single mom of 4, or if I were to be divorced, or if Kevin were to just quit working and collect unemployment, I would immediately get the benefits and coverage I need. But because we are both hard working parents who bust our chops to provide for our kids the basic necessities and healthcare they need, we are penalized by United, even though we pay astronomical monthly fees for the coverage we have. 
Ugh. Sorry to vent. That's just the story in a nutshell (a big nutshell I know  ). The other sickening part is that it's not just us suffering with all this. There's at least 20 other families at Kai's therapy place alone that are affected by United's stupidity, but most of them don't have the will to fight, and a lot of them are so exhausted by the medical situation of their child at home with special needs that they don't have the time or energy to fight it so they give in and just don't continue the needed therapy for their child. So I'm setting out on a mission to fight, not only for me, but for the other families with children who are extra special like mine. I'm determined to get the word out about how UNFAIR the united healthcare system is. I'll make our story known and heard and try to be a voice to make a change. Anything you know of or can do to help would be awesome! 

So... the above was written yesterday night (Thursday).  Today, Friday, I finished organizing 58 pages worth of documentation from Kai's medical professional team and faxed it to the "escalations team" at United Healthcare.  I've lost my soft and gentle side with them, and I've become very demanding and stubborn for immediate responses, because I've realized that's what it takes to get their attention.  I told them today that I wanted a phone call confirming their receipt of my fax, as well as I needed an immediate response to my request within the next 3 business days.  So here's the cool part... that fax took 40 minutes to send, so I had some time to chat with the Office Depot employee working on submitting it for me.  By the end, she was frustrated on my behalf, and only charged me half price for the fax!  In case you don't know... sending a fax is anywhere from $1 - $1.50 per page!  That adds up quickly with such a large fax, so her gift of the discount to me was a HUGE blessing!  
Then, within 30 minutes, I had a phone call from an escalations manager at United.  Maybe he realized by the size of the fax that I wasn't messing around, or maybe he realized when I told him in the cover letter that I was going to be filing a complaint with the National Association of Insurance Commissioners if I didn't have answers by next week... but whatever it was, he called to confirm that my entire fax had come thru and that he was submitting it to the appeals department marked urgent and we should have an answer within 3 business days!  Yep... so now, we wait, and pray for favor, and continue to gather ammo for the fight!  I don't plan to let this fight go with just myself.  There's WAY too many other families out there who are being affected by a healthcare plan that is highway robbery, but they are already so worn out and beaten down by their child's situation with special needs that they have nothing left in them to fight.  I guess God gave me a stubborn and strong will for such a time as this :)  I will fight.  I will fight for all the other moms and dads, and extra special children who need a voice.  I don't do bullying... and I won't put up with those that need help the most being bullied by a ridiculous healthcare company who is just banking off their customers.  So IT'S ON!!!  

Gifts

May 3, 2013

So once again, yes, I let a whole bunch of time go by without writing.  Once again, the incredible chaos of this roller coaster ride of life filled my hours, days and weeks.  But I'm thankful for that time.  The past few weeks have been some of the most challenging, yet incredible weeks of seeing God's fingerprints.  So buckle up and hang on as I fill you in on the ride...
So I left off last time filling you in on our California trip.  We arrived home to jump right back in with both feet running to our schedules of doctors and specialists and loads of other commitments with our other 3 kids.  I have to pause here (in my scattered thoughts... it'll make sense later.  promise!) and tell you about this amazing constant I have in my life.  Every week, Wednesday afternoon, I meet with this amazing group of girls to share life, pray, and dig into the Bible.  It's time that's precious, and I've grown to love each of the girls with my whole heart.  They are the most sacrificial, genuine, raw, real, loving, fun girls who love Jesus too, and we're all walking this journey called life together.  One of my dear friends, who has listened to me vent and cry over this journey with Kai more than any one person should ever have to do, decided about 5 months ago that she was going to organize 1 meal a month for our family from our circle of girls.  Can I just tell you how AMAZING it is to have one meal every month brought piping hot and SO yummy to your door?!  Honestly, it's an incredible blessing to have just one night that I don't have to stress making my kids dinner after our wild day of work, school, therapies, doctor visits, mom duties, and everything else in between.  They have also challenged me in some incredible ways.  We've been studying the death and resurrection of Jesus, and all the incredible suffering He went thru the past few weeks leading up to Easter.  I know the story of the cross.  I've heard it a million times.  But this time, it hit me hard.  I ask a lot of "why" questions right now.  There's just some things I don't understand.  And I don't think for a minute that those "why" questions are wrong.  But I've come to see just a tiny glimpse of Jesus' sufferings, and how He went thru it all so that He could 110% say with total and complete accuracy that He understood and He'd been there.  I'll never be able to fully understand, but I do know He felt alone.  He felt abandoned.  He felt rejected.  He felt the pain, both physical and emotional, of losing ones He loved.  He felt betrayed.  There wasn't a feeling He didn't personally experience.  So He gets it.  He knows my pain, and it hurts Him too.

Those were significant truths I needed to see these past few weeks, because quite honestly, I was at the end of my rope and beyond exhausted and burned out.  I am a pretty raw person, and I hold nothing back in saying that I was really struggling to believe that a good God would allow a mother to feel such pain as she watched her child suffer, with no known treatments, and no known cure to a disease that there's hardly anything known about at all.  And then we followed up the study of Easter with a new study we're working thru now... it's called "One Thousand Gifts... a dare to live fully right where you are" by Ann Voskamp.  I read the book a while ago, but honestly it was pretty deep for me and hard for me to grasp (I'm not a very deep reader... not enough attention span for reading!).  But this time we're doing the study.  And I know it's what God had in mind just for me to help to change my attitude of discouragement.  It's on grace, thanksgiving, and joy... Eucharisteo.  So I said this would make sense... all my garble... and here's why I open with this.  I'm working to change my focus to looking at the incredible gifts I already have and being thankful for them in the moment, not fearing the future.  That's much easier said than done, and no, I haven't come close to mastering it, but days like today, I have to hold on to things I'm thankful for, so I'll start this post with some incredible thanksgivings of God's fingerprints the past few weeks...
I mentioned the meals.  Seriously, and fellow moms can appreciate this, they are SUCH a blessing.  Due to a commitment I made a year ago to help coach what has grown to be an incredible program to help women complete their very first triathlon, my work schedule suddenly quadrupled, not to mention the client load I already had (for those who don't know, I work at the Y as a personal trainer, swim coach, and USA certified triathlon coach... my passion!).  I'm incredibly thankful for the extra income it's provided for our family and for the medical bills, but it definitely added a big stress to my already wild schedule, so meals have been HUGE!  Kevin works incredibly hard to make ends meet, but because of the nature of his job, he also travels most weeks for work, so evenings are overwhelmingly tough sometimes.  Oh yeah, even pizza delivered to us after a WILD week by a dear friend who knew I was struggling!
Then there have been these INCREDIBLE blessings of encouragement letters, text messages, Facebook messages, phone calls, and handwritten notes arriving on just the toughest days I've needed them.  Some have even included incredible sacrifices of generosity that I couldn't have in my wildest imaginations asked God to provide... gift certificates for meals, gift cards for iTunes to get Kai something new to do while he's visiting so many doctors, and AMAZING monetary gifts to help with our ever growing medical bills!  Even things like my kids getting "gifted" the season of soccer so that they could all play something they love but that we just didn't have the money to be able to do this season if it weren't for a dear friend who's walked a tough road of her own and understands first hand the stress of growing medical bills so provided the season to my 3 more than thrilled little soccer junkies!  And Hope Reigns, a free horseback riding therapy that has been an incredible blessing to Kai!  Wow... speechless.  And honestly, each one arrived on some of THE toughest emotional days for me, so such a little whisper of my Father letting me know that He knows and He cares.

Then there has been incredible friends who have helped research and contact agencies and foundations to try to help me figure out what things are worth chasing and what's not to try to best facilitate the needs that Kai has both now, and will have in the future, especially with expenses looming of moving (finding a more accessible home for Kai's growing needs), supplies he will eventually most likely need (walkers, wheelchairs, ramps, etc), and even friends helping me with creative ways to do therapies with Kai at home since I get burnt out with it on a daily basis.  Again... His fingerprints... that precious time I didn't have to research was sacrificed and gifted to me thru someone else's help.
And then there's the INCREDIBLE honor given to Kai as he was spotlighted by our Wake County school board, and was presented with the Wake County Spotlight on Student Award for 2012-2013.  "This award is only given to individuals who go the extra mile and expend that extra energy to achieve success..." (written by the school superintendent).  Kai was honored at the Board of Education meeting right after we got to celebrate his 9th birthday!  His teacher had nominated him without us even knowing, and he was chosen by the school board out of kids 3rd - 12th grade to be honored for his hard work.  It was an emotional evening, full of proud tears as my boy was recognized with a speech given about his situation, and how he had been nothing short of an over-comer and a fighter with an incredible attitude and determined spirit.  Things like this make a mama proud, and overflowing with thanks that people DO indeed recognize the struggle and the fight my little man goes thru daily.  Fingerprints...
 

(above- Kai with the superintendent... below- his award!)

 (above- Kai with his amazing principal and assistant principal... below- Kai with his INCREDIBLE teacher)

So I know, I know ... you're tired of my list and my pictures :)  And yes, I intentionally left today's doctors visit to the end because I'm still working on processing it all and finding the joy in today.  So today was a visit that has been scheduled since January 4, the date of Kai's initial diagnosis.  It was a BIG one.  We met with THE head of the MDA (Muscular Dystrophy Association) clinic.  I know, you're already asking why the MDA when he doesn't have Muscular Dystrophy.  The nutshell is that the MDA was names ages ago when all they saw, treated and helped was MD patients.  But they've broadened their umbrella now, and now they see a few other diseases, including a handful of types of Ataxia.  (remember, Kai has Ataxia with Oculomotor Apraxia Type 2... aka AOA2).  We knew going into this appointment that the MDA didn't recognize AOA2 as one of their diseases under their umbrella of coverage, but our prayer was, and still is, that they would accept Kai as an "exception" to the rule since his disease is so incredibly rare.  IF they were to accept Kai as a patient on the MDA approved list, then as Kai needed "supplies" (walker, ramps. wheelchairs, etc), the MDA would provide those to Kai to "borrow" at no charge.  HUGE.  Those things aren't cheap in case you were wondering!  :)  So... today Kai and I went and met with Dr. Smith, THE head of the MDA clinic at Duke.  He was wonderful.  He had obviously done his homework and researched a lot about Kai, his history, his tests, his other doctors... everything.  You name it, he had researched it.  He was incredibly personable too, which if you've visited any specialists, you know this is an incredibly rare gift as most of them have all brains and zero bedside manner.  He was genuine and cared and listened and answered in terms I could understand.  Amazing.  But he couldn't approve adding Kai to the MDA approved list.  Apparently the MDA has had a significant cut in their budget and grant money available, so they've had to crack down hard, and right now, he has no power to add Kai to their approved list.  Ugh.  So yes, this is incredible frustrating and discouraging, as it leaves an overwhelming future of needs ahead, but I also know that God is bigger than this.  He's provided up until now, so I know somehow and in some way He will continue to provide.  I'm also incredibly thankful for Dr. Smith and his heart, as he's agreed to keep Kai on as one of his patients, even though he's not an MDA approved one.  This is HUGE!  Dr. Smith is a highly specialized Neuro-muscular specialist, so being one of his patients will help us be able to eliminate at least 3 of Kai's other doctors as we can get all 3 of them in just 1 Dr. Smith!  

So... tonight I'm working hard to focus on the gifts I have.  I won't pretend I'm good at it, but I will say I'm trying, and some days are better than others, and some moments better than others... for tonight, I'm thankful for His fingerprints.

Kai celebrated his 9th birthday with some awesome friends... then an overnight beach trip with his siblings (thanks to some freebie nights earned bc of Kevin's constant travel)!