Tuesday, November 18, 2014

The Slippery Slope of "No Restorative Potential"

I find myself in an ongoing fight with Kaiser Permanente over their repeated use of the label "No Restorative Potential" in describing my seven year old daughter.

After calling their attention to this issue back in January in an Open Letter, they acknowledged that this was indeed very bad practice, they profusely apologized, feigned disgust and assured me they were making immediate changes to their language.  Eleven months later I received another denial letter, this time denying physical therapy and using the exact same language in justifying their denial: "No Restorative Potential."

I laid in bed last night unable to sleep - my heart racing with adrenaline, my stomach churning with distress.  Another fight, another battle - am I up for this? Do I let this one go? How much does this one really matter?

My conclusion - THIS MATTERS - A LOT!!!
And not just for Julia. This issue is bigger than Julia and her therapy.   This is about insurance companies deciding who is worthy and who is not.
This is about the way we value or devalue human life.
As humans then, THIS MATTERS TO ALL OF US!

Here is why:

In January occupational therapy was denied due to No Restorative Potential.
In November physical therapy was denied due to No Restorative Potential.

What comes next? Who is to say this stops with therapy?

When does it become:
The medication your doctor prescribed has been denied due to No Restorative Potential.
The tests your doctor ordered have been denied due to No Restorative Potential.
The appointment you booked has been denied due to No Restorative Potential.
The ER Admission you need has been denied due to No Restorative Potential.

How soon until these are the letters arriving in our mailbox?  How soon until No Restorative Potential means "not worthy of any of our resources?"

If Kaiser Permanente is so brazen to use this terminology in a written letter to us, how on earth do they categorize Julia behind the scenes?

"High cost, low return, resource suck?"
"The first to be cut off."
"Not worthy."
"Less than."

It's a slippery slope my friends.

And lest you read this with sympathy for our family but in the back of your mind are reassuring yourselves with thoughts like "well this is a child with special needs so this couldn't happen to me or to our family..." I have to ask you: REALLY?  How do you know? How do you know you are exempt from this slippery slope? Right now this is happening to kids on the more "severe" side of special needs, but what stops this from moving a little more towards "typical" and a little more towards "typical" and a little more towards "typical?"   Who is deciding on the criteria? I'm not, are you?

This label and these decisions from Kaiser were not based on Julia's current progress. Many of our dear friends who know Julia have cried out "Well they don't know her, they haven't seen all that she can do!" You are right - they don't know her, they don't need to know her. This is based on her diagnosis. A diagnosis from birth that I guess gives them permission to funnel her into the "No Restorative Potential" category. Kaiser hasn't done a recent evaluation to make this determination. No, her diagnosis is enough.  (Please note: I don't think this decision SHOULD be about performance, no one should have to audition for services - I'm just pointing out that they are basing it on a diagnosis and nothing else - which is also not okay.  The decision should be based on the fact that she is a human and she needs these services. Period.)

Do you know anyone with any diagnosis - aren't they more than that diagnosis?
Do you or someone you love have a diagnosis on your medical record which you would not want your worth based on?
Wouldn't you be outraged if decisions were made about the care of your loved one based solely on the existence of that diagnosis showing up on their medical record?
What if something you or your child or your loved one is being treated for now is suddenly deemed to make you "non-restorative" by the insurance powers at be.
Where does that leave you then?  In Julia's category.

"This doesn't affect me" or "this won't happen to me," are two of the most dangerous lies we can believe as a society. It is happening to another human being right now - if we are a village then it is also affecting you and happening to you.

Insurance companies are assigning varying levels of value to human beings and withholding resources from them based on those values. That is NOT OKAY!
Where is equality?  Where is co-existence?

"You don't measure up, you don't get the resources."

It's a slippery slope, it matters deeply, and we should all be concerned!


  1. Hellfire. SHARING THIS! Good grief :( I'm so sorry this has happened to you but kudos to you for writing about it and raising awareness.

  2. Heck yeah, I have Lyme disease and just got what I know is my first false negative result (I've had it before, I know what the heck it feels like no matter what a test says). I will likely have to pay for treatment out of pocket because of inadequate testing. I sympathize. Doctors should be able to override things like this, but hands are often tied due to insurance companies' ignorance. It's just bad. I've seen plenty of people with various ailments and disabilities overcome them. They cannot possibly know that there is no restorative potential in a person. No flippin' way.

  3. I was just prescribed medication my Doctor deemed necessary. The insurance denied it because they thought over the counter was good enough.

    Sometimes therapies aren't about being restorative. Sometimes therapies are about simply being able to live and walk another day because WE NEEED HELP!

  4. Wow. Even if the therapies will not "restore" her, I bet it would definitely make a change for the better in her life. And this should be the goal. I agree that therapies should not be paid by insurances when there's absolutely no use for them, but then again those are sometimes covered just to make money. Our daughter once got a chest x-ray to "rule out pneumonia", as the doctor said. We were in the hospital due to dehydration from a really mean stomach bug, no coughing, not respiratory issues, nothing that pointed towards pneumonia at all. But they did it anyways, to bill it to the insurance company and they, in turn, billed the deductible to us. Thanks a lot for making us pay for our daughter being exposed to radiation without any medical indication. And THANK YOU for denying your daughter crucial therapies to improve her quality of life just because it will cost them big time! This system is so sick!!

  5. This system just angers me. My son has no diagnosis and we've had insurance companies come back with MORE speech therapy after asking for social skills groups, OT, and more. They claim that the speech is the basic but are ALREADY covering it!!!! Ugh. I'm glad you shared this. I hate that this is happening and yes, people need to know. All of us are important. I do an Our Land Series thing if you're interested in writing something original about this for it, I'd love to read it.

    1. Thanks Kristi - I'd love to hear more about the Our Land Series - would you want to email me about it? laurieannearnold@gmail.com
      Thank you for reading this and sharing about your son...it can be so frustrating dealing with the system!

  6. This is disgusting! They were crying about death panels if Obamacare became law. I'm more concerned about insurance companies becoming the death panels and it seems it's begun. Insurance companies should not have this much power. I'm so sorry you have to go through this.

  7. Oh my word - insurance companies drive me BONKERS for this very reason. We were told my son's shower chair wasn't covered because hygeine isn't medically necessary. I really really wanted to hang that sign in front of every operating room and tell the surgeons to just not wear gloves. Thank-you for sharing this!

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