Movin On UP!!!!

Growing up is inevitable, and today marks yet another milestone for our BIG girl!!! Haley is being moved up a class at her preschool. Granted it is the one year old class, but she is moving up nonetheless. Her teachers have been debating the move for a while now. She is needing more intellectual stimulation and more structured activities and learning opportunities. The main reason they were waiting is because she was not mobile and they were afraid she would just be trampled on by the other mobile kids. They decided she was ready, they were just waiting on a spot to open up. Her first day in the big kids class will be Monday. A lot of the kids in the class she is moving to were in her class before they moved up so she will have some familiar faces. I am sad to know that she is moving from her current teachers. Ms Ann and Ms Violet are so good with her, but they are just right across the hallway, so they won't be far away.

Haley is getting better and better at walking. She is doing GREAT with her walker, she has learned to steer it and go pretty much anywhere she wants to go with it. I still keep the walking wings around her waist because I'm still scared that she will fall. I know she will fall eventually and will fall a lot, but she still doesn't have that protective reflex down pat and I still think if she goes down now she will go down hard.

Also, I can't remember if I posted about this before, but she is OFFICIALLY CRAWLING!!!!! Thinking back to January when this whole therapy thing started, I could have never imagined the day that she would be able to crawl. She has come along way and has worked so hard to get to this point!!!

And for those who are wondering what is going on with our insurance. We are in the process of the second appeal, and we are waiting for their response. I know what it will be, but I am hoping for a miracle. We were however able to qualify for 100% coverage through the state's early intervention program. We have been involved with them since the beginning, but their level of support is based solely on income minus medical expenses and childcare expenses. When we first started we did not qualify for any help, but because we have incurred so many medical expenses and I haven't been able to work full time since January we were able to get ourselves down to 100% coverage!! It is quite a relief, but we still have eat the costs of her therapy sessions dating from May until October. This is where the appeal is so important, we are hoping that insurance will come back and decide to pay for all of those visits.....so hope and pray that our appeal makes it to a sympathetic soul's desk (I'm not even sure if those exists in the insurance world HAHA). We are also waiting on Haley's walker to get here (which thankfully was covered by the early intervention program). The one she has now is a loaner from the state, her new one is much nicer.

Don't forget about the Joubert Syndrome 10x10 Fundraising Campaign. I am still brainstorming on several small projects and maybe one large event sometime next summer. But with the holidays coming, I know things like this aren't on the forefront of people's minds, I just wanted to remind people not to forget about it.

Happy Thanksgiving everyone!!!

OUTRAGE!!!!

I am sure some of you know what we have been going through with our insurance company lately. So I am sorry if I am repeating myself, I am posting this to prove a point and to say once again that our health insurance system is broken. I'm not getting into the politics of whether what the government is trying to do with health care is right or wrong. I'm simply saying, that as it stands now, we are being let down by the system.

Forgive me for being lengthy with this post, I'm hoping that this will help raise awareness and help someone else out in the future. I am also looking for any advice from those whom have either been through something similar or know how to work the system better than we do, or opinions on whether you think we really have a leg to stand on during this fight?

Our insurance company has been denying all claims for PT and OT since May stating that the diagnosis of developmental delay is not covered under our plan. So I gathered up all the documentation I could find proving that Haley's delay is most certainly due to a very specific cause, Joubert Syndrome. I very confidently put all my little documents in the mail last month, feeling like I had all my ducks in a row.....how could they deny us now, here they had the proof the needed!!!

Well, much to my dismay, I opened the big fat denial letter today. It was like a sucker punch in the gut. My pessimistic side told me not to get my hopes up, but deep down I thought for sure they would agree to pay....who was I kidding, health insurance companies are nothing but money grubbing evil empires. So now they are trying to slip through a different little loop hole. Blaming it on developmental delay didn't work, they are now going to try the"this is not an acute illness" approach. This is the letter I received (some parts have been removed to cut down on redundancy):

"In your appeal, you requested we reconsider and allow the PT and OT because you stated these services are medically necessary due to her Joubert Syndrome.

This review confirms the initial determination that the PT and OT is not eligible for reimbursement. Under the plan, benefits for ongoing therapy in this case are not covered. PT and OT are covered under the short term rehabilitation benefit which provides coverage for acute conditions when therapy is expected to result in significant improvement of the person's condition within 60 days from the date the therapy begins. In this case, the condition is an ongoing and not an acute condition.

The denial of coverage is based solely upon the reasons set forth above. No other basis for exclusions (e.g., medical necessity of the services or supply) that may be applicable to the circumstances was evaluated at this time. Therefore, we are upholding our previous determination.

Short-term rehabilitation is therapy, which is expected to result in improvement of a body function, which has been lost or impaired do to: an injury, a disease, or a congenital defect. Furnished to a person who is not confined as an inpatient in a hospital or other facility for medical care. This therapy shall be expected to result in significant improvement of the person's condition within 60 days from the date therapy begins."

I am confused by the fact that our plan will pay for unlimited therapies, with no lifetime maximum visits but yet they only consider payment for acute cases. Why would an acute illness need unlimited amounts of therapy......fishy, don't ya think? Also, why would they every pay for therapy from the start if they knew all along that she had a chronic condition? Furthermore, they paid for therapy for approximately 120 days before they began denying the claims....I thought they had some ridiculous 60 day rule????

It also befuddles me to see in writing that, according to their standards, Haley has not made "significant" progress!!!! This is a little girl who in January did not even have the grip strength to hold our hands to come to a sitting position, and today she is on the verge of walking. I am sorry, but that is VERY significant progress!!!! I take that as a personal insult to Haley to say she has not made significant progress.

So, our next course of action is to file an, albeit useless, second appeal, which will include documentation from our PT and OT proving Haley's SIGNIFICANT progress. All we can do is keep fighting and keep trying to prove our point. Haley will likely require some form of therapy for most of her childhood, so we are just in the beginning of therapy. Insurance companies rely on the assumption that most people will back down and not fight, they also are slimy bastards and will slip through any loophole that they can find or create. We will not go away quietly, I declare WAR!!!! Won't you join me???