Learning to Advocate for My Daughter

Learning to Advocate for My Daughter

Who knew that having a child with Down Syndrome would lead me to advocacy? Certainly not me.  I expected that life with a child with DS would be challenging at times, but I did not expect (though quickly learned) that I would have to battle doctors and insurance companies every step of the way.

It’s exhausting, this life we lead.  Children with DS are similar to yet very different from children without DS. Three weeks ago we were notified by the home health company that provides our daughter’s therapies that Addison would not be receiving services until our insurance company paid for the services she’d already received. A call to the insurance company uncovered that the home health provider was providing incorrect codes when submitting bills for payment.  Thus began the daily phone calls between myself, home health, and our insurance company.

After speaking with our insurance company earlier today, I found out that they retracted earlier payments, going all the way back to January 2016, for Addison’s therapy, stating that the home health company failed to show “medical necessity”. REALLY???? My daughter is feeding tube dependent, has oral aversion, feeding difficulties, related to her previous heart surgery, and this isn’t considered a medical necessity???  I was told that I could appeal their decision, and that to do so I would need to provide as much medical documentation as I possibly can.  Isn’t that what the home health company has been doing?! Whereas they get that information free of charge, I have to pay twenty cents per page for the same information that has already been provided to them by the home health company.  I was so angry and frustrated that I cried.

We already go through so much with Addison, and now we have to go through this?!?!  It’s reprehensible.  All of it.  We do our best, and have tried to keep up with her therapies ourselves, but I am not a trained therapist.  I want to be Mom, just Mom.  Instead of spending time with my daughter, I am forced to make phone calls and look up information on the internet to help “make my case” for medical necessity.  If I could I would wave a magic wand and Addison would suddenly start eating on her own and would learn to crawl or walk,  and there wouldn’t be any need for those therapies.  And the insurance company could stuff it.


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