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Feeling Defeated: An Update on The Nursing Appeal

Photo Credit To Lacey Orchid Photography
I received the appeal packet for Christian's nursing appeal today, have read through all 200 pages and I am feeling defeated before this appeal hearing even happens. Not because Christian doesn't qualify or need the nursing hours, but because the way the rules are written, they make it nearly impossible to overcome. He not only qualifies, if Christian doesn't qualify, you would be hard pressed to find many children who did.

Tenncare is riddled with injustice and unfair practises in their appeals process and decisions of care. The appeals process is set up to work in favor of the insurance company. It would be a miracle or luck for me to win this appeal, let alone someone who isn't an attorney. The basis on which they decide care is so intertwined with literal word vomit that no rationally thinking person could have come up with it, and no average, low income family trying to understand their rights could ever possibly make sense of it all.

Anyone who takes the time to read the Tenncare Rules can plainly see that Tenncare was not set up with the best interest of the children they serve in mind. It is written to place as many obstacles in the way of receiving care as possible. And we all know why that is. Money. It's about money instead of the child, and I am so disappointed in Tennessee and our government for letting Tenncare get to this point, of being such an obstacle in the way of care for children who need it, rather than

As medically complex as Christian is, there are still hurdles that he doesn't just plainly overcome, because Tenncare made sure that even the most disabled, medically complex child who needs the absolute most care required still has to prove things that they can't prove.

I am sick and tired of proving to people that Christian needs care. Look at him. Look at his list of a dozen different diagnoses. Look at his list of surgeries and hospital stays. Look at his list of specialists. It's not rocket science, but it is medical science. It's also not a accounting, but Tenncare seems to be crunching numbers on this one. My son isn't a dollar figure to the bottom line of a company. He is a human being, who needs medical care that Tenncare makes me jump through hurdles to get AND threatens to take away at the drop of a hat when they arbitrarily decide he doesn't need it any longer. A decision they came to based off some person who doesn't know Christian, doesn't know anything about his needs or his daily life, who comes to our home for one single hour and decides that Christian somehow isn't "that" disabled.

I am SICK of it. I am angry. I am frustrated. I am disappointed. I am man. Dang it, I am furious!!!!

Christian losing his nursing care means that I will have to look into someone who isn't a nurse to care for Christian for those hours his nurses were caring for him. That means that his risk of injury from having an unskilled person caring for him goes up, dramatically. It means I either never leave his side, or leave him with someone who isn't trained to care for him. It's maddening.

It also means that Christian won't be able to finish out his school year at the schedule he's going now. We will have to cut a day of his school, most likely, as that's the only way I can figure to make the hours work as proposed. And it certainly means that Christian won't be able to attend school full time until he is independent and self reliant, so maybe by high school?

It also means I can kiss goodbye my legal career any time soon. Which means my family will continue to be a single income family who falls within the low income bracket. Which means that we will have to depend on services like Tenncare for a much more extended period of time than we could have. Because that's cost effective, huh?

I am still going to go through with this appeal and I am going to fight my tail off. But I SHOULDN'T have to! I should.not. have, to!!!!!! The medical records speak for themselves. His personal doctor speaks on my behalf and thinks it's crazy to take his hours, and I quote his pediatrician, "If Christian doesn't qualify, who would?!" Exactly. My point exactly.


  1. I am so sorry you are going brought this Lacey. Medical insurance companies are billion dollar companies and they stay that way for being for profit and not the people. I have had to fight the insurance companies for myself more than I'd like. It is awful that the almighty dollar comes before a beautiful child and his hard working parents. Like you said people who can't get through their papers won't even know they can fight or how to. They set them up for failure. It is horrible and I hope that one day our insurance companies aren't billion dollar companies profiting on the ill. Hang in there. You are such an amazing mother!!

  2. How can they not approve him? Can't they see for themselves or read a medical report?? I am so sorry they are putting you and your family through this. I will pray for all of you.

  3. I feel your pain. In Australia we have a disability pension scheme which is equally impossible to apply for.
    In our case, my autistic grandson has used up all his funding. It mostly went on speech therapy & he's come a really long way, but as his mum is on an invalid pension & I am on an aged pension, there is little left for ongoing therapies. He still really needs occupational therapy, chiro, speech & could do with a teaching aid at school to stop him falling behind, but these are beyond our means.
    This all means that his chances of growing into a self sufficient, independent young man, are limited. You'd think governments would realise, this will end up costing them far more in the long run, than investing in him NOW.
    Frustrating to say the least, not to mention worrying & heartbreaking
    Sending love & every good wish for the future

  4. We are going through issues for my son (in Texas) too. He has been denied all types of coverage. He was born missing his limbs. He will ALWAYS need help & yet we don't qualify. We were blessed in the fact he has a strong immune system, but all surgeries & procedures are high risk and need specialists' attention & prosthetics and equipment will also be needed. I pray that one day the "system" will identify the children as children and not a wallet or paycheck. Will be sending our love and prayers!!

  5. I can't even imagine!!! My son has a g tube and for that alone we get 60 hours a week for nursing. He has other battles but none of them qualify him for nursing. I can't believe you are having to go threw this!!!! Makes me so damn mad!

  6. I hate to be the one to say this, but it is too important to ignore. Find someone who knows "the system" ask around. I have met many who have figured it out and can work it the way it is meant to work. No BS. Best of luck.

  7. If TennCare were only for disabled, elderly and veterans, there wouldn't be a problem. But they willy nilly give it to women, men,and their kids because they're too lazy to get off their butt and get a job to pay for insurance. Sorry but a pregnant woman should be on and cut off 3 months post partum. A "normal" child should be on it until age 6, not their parents too. Again, TennCare needs to only be for disabled, elderly, and veterans.

  8. Oh lacey i am so sorry you are having to deal with this. You and your family are in my prayers. By the way i got your book today.

  9. I have no words. This is just insane! I am praying that this craziness can be resolved and soon!

  10. I am so sorry Lacey. I have no words...your family, Christain deserves this care. This is the type of case that should be a no brainer. Continued prayers.

  11. My heart goes out to you. As a mother of 4 with 3 of my children with dual medical conditions,I know what you are going through. You must fight the battle and you WILL win. I understand when you say why should you fight your tail off, it should NOT be this way. I agree but unfortunately you will always find yourself fighting battles for your children with special needs. It really sucks, the time and energy spent fighting for your children rights and services should be spend on caring for them and finding time to also care for yourself but thats not the way it works. Only parents with special needs children know what you are going through. This is what makes us parents so special, because it is an never-ending battle we fight. You put on ur fighting gloves and fight! At the end of the day you will find your self feeling exhausted but also feeling rewarded knowing that it was all for the good of your son. You will win and you will feel triumph. Xoxoxox,

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  13. Lacey,
    Don't get discouraged. Of course it's all about the money with these people...can't forget who is running the show! Just always remember God is in control, He is greater than any problem or obstacle you will come to face with. Rely on God alone, it is He who stays close and never lets go of your hand, ceaselessly working on your behalf.
    Try training your mind and thoughts to focus more on Him and how much greater He is than the problem itself, putting your trust in Him!! You know that if God can take care of the small things then He can certainly take care of ALL things Lacey...Continue to be prayerful and cling to God and His Word, trusting Him, and I will continue to be prayerful for you and your amazing family!!
    Romans 8:28:"....ALL things..."
    -Miranda Myers

  14. Two thoughts, get your State and US Senator and/or Representative involved in your fight. Go to their offices and plead your case. They can help--tell them Christian's story as eloquently as you always do...don't take no for an answer. Get a support group to picket outside their offices with signs, get news coverage TV and newspaper, show the denial letter to the journalist, i.e. get organized and make a stink. Also check with ACLU, ADA, other disability organizations about getting a lawyer pro bono to represent Christian. Pardon me, I know y'all are Christians I have been following y'all for years...and you have inspired me more than I can say...but at this moment, all I can tell you is give them hell. Politicians don't like to look bad, neither do companies, use that to make them do what's right. I hope this helps and you are in my prayers.

    Claire Spann

  15. This must be so difficult and heartwrenching. I know it's daunting, but it sounds like this is a battle that needs fought. I know your plate is full Lacey. But you already have a voice...a platform. You have a foundation on which to stand to launch a battle for change. I imagine this is an issue in a multitude of other states. Start with TN...lead the charge. Pray first....

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  17. This is awful. I recently lost my job and was getting medical assistance. Because of an error when they reviewed my case, I lost it. I was sent to Obamacare. The ONLY plan they had to offer me was 764.00 a month! I went from being only 200.00 over the qualifications for MA to being expected to pay almost 3/4 of my income on healthcare. And I need it due to chronic health issues. I went to my State Rep to help me file an appeal. They sent it right to a supervisor for me, and I had my MA back within 4 days. Have you tried someone like that? I'm sure you have, but I'm hoping something will help you. I have two special needs Grandchildren and it would make me curious if this were happening to them.

    1. Sorry, meant furious not curious.

  18. My brother is special needs and yes it is impossible and you risk losing coverage or having to pay back when you cannot justify how they lay out every penny of money they give you in Kansas. I am so sorry. How can we escalate this to your senators or congressmen in Tennessee ?? Isn't there a bigger outfit you can ask for legal assistance that would be able to amplify your situation? It isn't right what families of handicapped and special needs members have to go thru to get the care they need.

  19. I am a medical biller & I think BCBS Insurance covers this type of patients I did not remember that BCBS Prefix.


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