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!

Thursday, November 13, 2014

Not Salvageable

This past summer I did something I've never done before - I was a participant in group therapy.  As a therapist I have developed groups and led groups - but hypocritically I had never actually been IN a group.  So that's what I did. I spent twelve consecutive Monday evenings for two hours with a group of four people and a leader - and I worked on some stuff.

One of the assignments we were given to work on between sessions was to write about a story from our childhood that brought us pain and that we believe is still in some way negatively impacting us.

I wrote about a time in fourth grade when:

I got off the bus at my bus stop, turned to wave goodbye and a boy I liked said to me through the window "You are fat. You are ugly."  My smile and wave dropped and I turned away quickly, trying to pretend I hadn't seen it. But I had seen it. I had felt it. It happened. 

I also wrote:

The way I think this story negatively impacts me still today is in my distrust that people actually like me. I think I hold back and cautiously wait to find out how they really feel.

So that is what I had written for my assignment when I returned to group therapy the following Monday.

"Your assignment tonight," our leader explained, "is to repeatedly read your story out loud to the rest of us for five minutes. Just keep reading it."

Yikes - my story was kind of short - I should have added some context and descriptor words...this is going to be awkward.

But I did it. I read my painful childhood story out loud to my group for five minutes.  The first time through emotion caught in my throat and I heard little gasps from my supportive group members. The second time through the emotion was still there but less overt, no choking up.
By the tenth time reading this story I was over it!!! My painful childhood story was getting a little old! We get it already, he called you fat, it made you sad - let's move on!!!!!

When asked to describe what the process of reading my story out loud to the group was like I told them how repeating it over and over again caused it to lose it's power. I still felt sad for my fourth grade self, but the emotions were less complex than before. It didn't feel like it had as much control over me as it previously did, back when it was privately stored in my brain just for me to feel and fester over.

"We sure do like our stories," was our leaders response and I had a vision of Gollum hunched over The Ring, stroking it and calling it "My Precious." Yes, we sure do like our stories, even, and maybe especially our most painful, our most precious.

"Final part of the assignment," our group leader said, "rewrite the last part and rather than telling us the negative impact, tell us how this story has positively impacted you. You are who you are today because of your experiences, so who is to say that the positives about you right now don't come from your painful stories?  So how has this story positively shaped the person you have become?"

Whoa...wait a minute.  I now have to be thankful for being called fat and ugly??? What the heck?  I knew this was a mistake, I should have just kept leading groups. I don't want to do the hard work of being a participant. I DON'T WANT to be thankful for this story. I want to be hurt and damaged and bitter - maybe at best somewhat indifferent, but thankful - no thanks.

Reluctantly, and because I am a pleaser, I did the final part of the assignment.  I looked for something positive from my fat and ugly story - something to be thankful for.  And once I found it, I actually really believed it.

I guess this experience may have had a part  in shaping me to be sensitive towards others, to be more aware of the power of words and our need for encouragement from each other. I think of myself as an encourager, so that may be the good outcome from this experience, the part I can be thankful for.

Ahh,sweet. That felt kind of nice.  I think that was good for me. I feel - better!

But what does this have to do with anything really?  Why am I writing about this? Laurie resolves some childhood insecurities about being chubby and comes out thankful on the other side. Big deal.

The thing is I couldn't stop thinking about this exercise. Out of twelve weeks of therapy, this was the part that had the biggest impact on me. Especially what the leader had said about our stories, "We sure do love our stories."

Oh man, we totally do, I totally do. And I have some good ones. Being the mom of a child with special needs you rack up painful stories quickly. You don't have to go looking for them, or add exaggerations to the real thing, they are everywhere and they are bad!

Some of these stories I keep to myself, stroking them like Gollum with the Precious, giving bitterness permission to fester with every retelling in my head.  Other stories I whip out in situations when I want a reaction from others of shock or sympathy or rage in order to give my self-righteousness a justification to stick around. Wow, I sure do like my stories.

But, I wondered;
1. Is this healthy for me?  
Answer: Probably not.

2. Are there any stories I need to take a second look at, like my fat and ugly fourth grade story, and instead of letting it fester with negativity I should maybe try to find the blessing?
Answer: Yes, probably several - but for sure there is one. One obvious one, the big one. My Precious.

I was 39 weeks pregnant with Julia. Scheduled to be induced on Friday morning.  I went in to see my doctor on Wednesday for a quick check to make sure we were on schedule. It was the only appointment of my entire pregnancy I went to alone.  And the doctor said to me, "She may not be salvageable."  

Not SALVAGEABLE???? What in the world? What are you talking about? She's not a Geo Metro. She's a baby, my baby. My baby I am going to give birth to on Friday, and hold and love and adore. How can you say she may not be salvageable. No one has said anything like that to us up until now. Who uses this awful word???

I have held a grudge against this doctor for seven years for saying this to me. He frightened me in that office all alone. He made an already scary situation so much scarier. His words caused panic for all of us that we didn't need to be feeling at the time.

And I have allowed myself to be bitter over these five words.  Every birthday we've celebrated I've thought of him, "Ha, take that!"  Every big milestone we've hit I've wanted to send him a card with a picture saying "How's that for not salvageable?"

Oh, how we love our stories.

Okay, back to the assignment. Find the good. Find the good. Find the good in "not salvageable."

Oh my gosh, It is right there! It is so obvious and I am such a hypocrite.

The one consistent message I have had about life with Julia, (beyond that she is the best thing that ever happened to us and the joy of our lives), is that our journey as her parents has been easier than it might have been because we were told to expect to lose her.(Ding, ding, ding, ding, ding!)  As a result of that warning
we have measured every moment with her as a gift, a gift we weren't sure we would receive. We've never viewed anything about Julia as a deficit, everything has been a glorious, glorious gain!

For seven years I have had these two parallel stories in my head: one about how an awful, insensitive doctor told us Julia might not be salvageable, the other about how our lives with Julia have been better because we dropped all expectations and simply celebrated the miracle of her being here. But I had never put the two together or recognized how the first contributed to the second being possible.

Julia Anne, age 7, love of my life
This story has now lost its' negative power. The bitterness has evaporated. I can honestly say now that I am thankful for it. Thankful for what in the moment was painful but led to a greater and more powerful gift. This story is what has been salvaged.

My doctor, in saying those five awful words to me blessed me.
In preparing me to lose everything, he actually set me up to be thankful for everything.

Thank you, doctor. (Please stop using the word salvageable when referring to human beings, but thank you.)