Dear Kaiser Permanente,
This afternoon we received your letter informing us of your decision to deny our 6-year-old daughter occupational therapy because she demonstrated, in your words, “no restorative potential.”
This was quite a blow. Not the part about denying OT (at this point, denials from you are a dime a dozen, no offense). If our plan doesn’t cover OT, we accept that and will figure something else out. But that’s not what your letter said. You said the reason she has been denied OT is because she demonstrated no restorative potential… huh, that’s different.
That’s subjective. That’s a decision someone (unknown to us) makes based on some matrix (unknown to us), using selective data (unknown to us) about our daughter to decide whether or not she has restorative potential (which honestly, what that even means is pretty much unknown to us).
And you decided she does not.
So this isn’t actually about the coverage we should get through the plan we pay for. This is about you trying to play God by making judgments on the value of our daughter’s life.
While you clearly deem yourselves knowledgeable enough about our daughter to determine she has no restorative potential — you also clearly don’t know our daughter.
You don’t know the girl who is a survivor and fought twice to stay in my womb before she even reached her 20-week ultrasound. You don’t know the girl who couldn’t suck when she was born but kept trying to choke down milk so she could live and grow.
You don’t know the girl who started having hundreds of seizures a day when she was only 6 months old, whose brain was so overwhelmed with seizures she shouldn’t have been able to do anything but be a zombie and yet would still smile for her daddy.
You don’t know the girl who went through medication after medication after medication to reduce her seizures enough for her brain to finally, at 18 months old, get a break and begin to recover. Who miraculously started using her vision after a year of being blind, who learned to sit up on her own at age 2, who started to reach for toys, to hold her own bottle and put her own pacifier in her mouth at age 3. All of this to the amazement and wonder of those of us watching her closely.
You don’t know the girl who continues to meet developmental milestones even after her seizures returned, this time in the rare form of a static seizure during sleep. You are a medical expert, so I’m sure you know all about ESES and I don’t have to explain this to you, but just in case, this means she gets NO GOOD SLEEP. Imagine how you feel after one night of bad sleep. This girl has been without restful sleep for three years. She closes her eyes to sleep and her brain goes into a constant seizure and yet, even in spite of this, she continues to develop. You try that. You go without sleep for even three days and see how well you are functioning, let alone three years.
Without sleep, she has started standing up and taking steps. She has learned to do somersaults and boy, they are the most amazing somersaults you’ve ever seen. She signs yes and no, she looks at books, she points to her eyes when she wants her glasses and she points to pictures of toys she would like to play with.
This girl, who according to you has NO RESTORATIVE POTENTIAL, who is currently on three very strong anti-seizure meds and still has seizures in her sleep, does more every day to demonstrate potential than any other human being I know.
But you don’t need to know any of that. I’m sure the information you based your decision on (What was that information, by the way? I don’t remember being asked.) was enough to determine her lack of restorative potential and justify your decision to cut her off from therapeutic services. Therapeutic services which I believe are meant to help people overcome their challenges right? But just not our daughter because her challenges are too many — so therapy wouldn’t apply to her. I guess the people your therapeutic services are for have a lot less problems and need a lot less help and therefore qualify for more help — is that how it works? That makes sense.
You don’t know my daughter, Kaiser Permanente, so maybe you don’t care at all about this label you’ve slapped on her. But I know some of you have daughters or sons and if you would put yourselves in our shoes for just a moment and imagine what it would be like get a letter labeling your child as having NO RESTORATIVE POTENTIAL, your stomach would turn, too, and you would think, wow, that is no way to talk about my child or any human being really, and you would be upset and you would be outraged and you would want that language and that mindset about human value changed.
Ultimately this is not about me proving to you my daughter has potential; she does. I know it, anyone who spends five seconds with her knows it. This is about me asking you to reconsider the way you talk about a human life: to eliminate the option of ever answering no to the question of potential for any human being. You have potential; who are you to say someone else does not?
A blessed mother to Julia Anne, age 6, bursting with potential!
This post originally appeared on I’m Julia’s Mom.
Story update: This was originally posted on January 2014. This post went viral and Kaiser contacted me within a day to apologize (profusely). They claimed higher ups in the company were outraged and addressing this “as we speak.” They told me this was auto-generated language that they would be changing in their system because it should never be used to describe a child. I was satisfied with this response and thanked them for being so concerned.
Unfortunately, about nine months later, we received a letter with the exact same language. I went to social media again and again Kaiser contacted me to apologize, this time claiming it was not their fault but my husband’s insurance plan that required this language. They claimed again they would try not to use this language in the future. I left it at that, there might have been more to pursue with Kaiser and going to the media but I just didn’t have it in me. I did write a second blog about it called “The Slippery Slope of No Restorative Potential.”
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