Wednesday, November 30, 2011


When Kyle was born we had no idea or concept what care would be involved in taking care of our guy. After 2 years of life he maxed out of our private health insurance. At the time I was scared and mortified....if he had already maxed out what would we do without insurance? Luckily our drs helped point out the way and I quickly got Kyle signed up with our state insurance. For 5 years I have had to have everything done perfectly or Kyle is in jeopardy of losing his insurance- twice a year I have to provide over 50 pages of documentation to show why Kyle needs his insurance and his nurses. When we went to Disney for Kyle's MAW trip we had a scheduled conference call with the state for his yearly phone review, 2 weeks before we left I called the state and told them where we would be. They said oh no problem we will reschedule you for the next week. Great, awesome right?! Yah not so much, so and so didn't put it in the computer and we came home to Kyle having no health insurance. It took 4 days for the state to realize their mistake and correct it, 4 days in our world with no insurance is beyond expensive. This is only one example of what happens in the works of state insurance. Even with all the headaches and chasing my tail I stayed so grateful...even with all the extras they don't cover I still kept thanking god every day for the help. We would honestly be homeless if we did not get this assistance. So 2 weeks ago I received a phone call from the State telling me that after reviewing Kyle's chart they wanted to offer us more nursing hours. They were shocked at the amount we used with the level of care needed to care for our guy. I'm not ashamed to admit that I sobbed on the phone. Kyle has not slept thru the night in 15 months. He is up multiple times a night requiring IV meds and other comforts. I don't complain about it but I'm exhausted. I'm fading. On top of that after 7 years I want to hold and comfort my baby, not hold him down and continue to always be doing painful things to him. So the thought of some additional help blew my mind. Five hours later I receive a second phone call saying...ooops. Wow, we made a mistake..because your husband has a job Kyle only qualifies for a program that has a cap on nursing hours, in fact because of this you will max out his nursing hours in five months. If you max out he will lose ALL of his insurance for the rest of his calendar year. Kyle qualifies for unlimited nursing hours but because M works we can't get that insurance (although if he quit or was fired our whole family would qualify). Shocked, worried, sad. The state had the nerve to say to me...the only thing that saved you last year was your son was extremely sick and in the hospital most of the year. We are being punished for keeping Kyle at home with us. We are making ourselves sick with exhaustion chasing our tails to keep our guy where he wants to be in cooperation and with full support of his palliative care drs and we are being punished for that. Punished because M works his tail off. They tell us there is nothing we can do because it's a federally mandated program. We have no idea what the next steps are. How can a child qualify for one thing and be punished because his parents are trying to take great care of him. XO k


Lauren said...

Oy vey Kate! It makes no sense and I'm so very very sorry.


Olga said...

wow, this blows my mind although sadly, i am not completely surprised given the mess the is healthcare. have you by any chance considered talking to a health attorney, or a health advocate lawyer? sometimes people make mistakes in how they interpret a law, or there is more wiggle room than they are willing to tell you about, or, well... who knows if there isn't something that could be done. i am desperately sorry to hear this. :-(

Susan said...

I think you will need to appeal your case. I am new to this field and work in medical billing. I will certainly question my supervisor who has been in the business for over 10 years. She may have some suggestions. I will ask her tomorrow and get back to you.

Anonymous said...

I feel your pain, regarding Maine Care procedures, my son doesn't have anything near what you are dealing with but was denied access to some mental health services that were only accessible if we had Maine Care, fortunately we were able to qualify for Katie Beckett (I assume this is how Kyle qualifies?) it was so frustrating the hoops they make parents jump through though, as if you don't have enough to deal with just coordinating his care. Hang in there, someone reading this will know where you can turn I just know it. Thank you for sharing Kyle and your family with all of us.

Anonymous said...

I'm so ANGRY at them for you!!!! The world is so backwards in so many ways. This too will work it's way out, but I know that you're stressed until it does.

HUGS to you!!!

Page said...

Oh... I'm so sorry. I don't understand how these people live with themselves sometimes. It's almost as if they aren't human. Like they are trained to leave any form of emotion or decency at the door.

Luke doesn't need anywhere near the extent of care Kyle does, of course, but I get the 6 month renewals and not qualifying for certain things because of rediculous narrow reasons. (for us my husband's 401K has gotten Luke denied for certain benefits) We deal with things on such a smaller level and I get frustrated and angry and sad... I just can't imagine what it must feel like for you.

Much love,

Anonymous said...

Oh Kate this makes NO sense! I'm so sorry and think you have every right to scream, cry, throw a fit, and fight back where you can. There HAS to be something that can be done and knowing you, you're already ten steps ahead on that.

Hoping, praying, and thinking of all of you daily! Taylor and I pray for Kyle every night and all of you!

Much love and many hugs K!

MJ said...

Oh my, what a crazy situation! There is no way that the hospital makes sense. It's almost as if you are being punished for working.

The only thing I can think of is to ask the social worker at your local hospital about pro-bono lawyers who will advocate for children with disabilities. Kyle's medical challenges should qualify him as disabled. though you need one more thing to do.

I will pray for you.

Anonymous said...

Usually overnight shifts are covered for children on vents, feeding tubes or other things that require constant monitoring. During the day you get nursing for hours when you both will be working and then you qualify for some respite time as well. I found a coordinator that handles everything from the application process to finding the nurses- that is the only way I was able to navigate it all.

Anonymous said...

Hi Kate, It's Cindy. Just had a chance to read your blog. Let me run this by my News Director and see what we can do!