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!!!