Wednesday, January 15, 2014

"No Restorative Potential" An open letter to Kaiser Permanente

Dear Kaiser Permanente,

This afternoon we received  your letter informing us of your decision to deny our six 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 about our daughter (unknown to us), 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 six 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 3 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 5 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?

Yours,

Laurie Arnold
A blessed mother to Julia Anne, age 6, bursting with potential!




43 comments:

  1. Perfect Laurie. If they don't respond we we will fill their building with support for Julia and stop their cruel ignorance.

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  2. Hi Julia Anne!
    I wish that I could meet you. I wish that we all could! This is a very touching photo of boundless and ineffable love! You and your family are very fortunate to have the gift of you in their lives. I imagine that one day there will be a world loving you: now that's a world of potential. Because, what is greater than love on this earth?

    What else do we really have? Besides that, I wonder how many people who occupy this planet, have the sheer ability and determination to persevere and grow in the face of such adversity. We'd all fold like wet cards, if we even attempted to accomplish what you have in your short, beautiful life? Imagine how wonderfully different this world could be if we all had your gift to grow and develop without the human need for sleep??! You are an inspiration to me! As I know you are to many who know you, or know your life story. Carry on! The world is watching you, sweet girl!

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    1. Thank you for reading and for your kind words! I agree, what is greater than love?

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    2. Bravo! Bravo! Your daughter is so lucky to have such an "advocate." Laurie, I am so proud of you for speaking up for your child & for all the thousand special children who are often affected by the "callous" decisions of these capitalistic Health Insurances whose only "interest is make profits" without caring who they hurt.

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  3. Hi Laurie,

    My heart goes out to you for your family and your little girl. I work for a medical insurance company (not kaiser) and wanted to offer my inside perspective that may help you in your appeal process. First is understanding the insurance lingo they have given you. When they say "no restorative potential" it isn't a remark on your daughter's worth or character. I agree it is a poor choice of phrasing but what it means is that according to the documentation your providers supplied them, it doesn't appear that she is making strides of improvement in function (to restore function previously lost due to illness or injury). Many policies only cover pt/st/ot to the point where function progress is made and is not covered once a plateau is reached (even if that plateau isn't back to "normal" function for that individual). Most policies don't cover "maintenance therapy" therapy needed to maintain a level of function but doesn't actually progress it further. Maintenance therapy situations are typically paid for by patient's directly and are not a benefit under most policies (this goes for inpatient custodial care vs skilled nursing care as well).

    What I suggest is to ask the insurance company for a copy of the criteria they use to make their determination and copies of what they reviewed. (Sometimes it is an issue of the provider not submitting everything that is asked for and the medical review staff basing their determination on incomplete data.) Then take that info and speak with your daughter's therapist and doctor about her functional goals and progress obtain those functionally improvement goals, go over the insurance ' s criteria with them so they can see specifically what would be needed for coverage. Then submit your appeal. It could be by criteria definition your daughter falls into "maintenance therapy" but there is a possibility it does not.

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    1. Kudos to you!

      From a mom who has had to fight for her son!

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    2. Thank you Michelle for taking the time to read the blog and share this info! I appreciate it and on a non-emotional level do understand the process... but I will be looking into how this decision was made and will appeal. My main issue is in the language and labeling - I hope that can be shifted to better honor life! Thank you again!

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  4. Have you tried cannabis oil? It has worked well for others who have had seizures and uncontrollable Parkinsons. Best of luck whilst re-affirming her potential.

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    1. Yes, thank you! We are looking into this option for Julia and we are encouraged by the positive reports coming out about this treatment option!

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    2. Hi Laurie, I am very glad to hear you are thinking about this treatment. I don't know where you are in the world, but my father has successfully helped a little girl in Denver, Colorado get this treatment for her seizures. It was recently featured on CNN with Sanjay Gupta, and my dad was interviewed. In fact, here's the link: http://www.youtube.com/watch?v=Z3IMfIQ_K6U If you want to get in touch with my dad, he is very knowledgeable and I think he would love to talk to you. His website is www.amarimed.com - and you can tell him his daughter sent you. I really hope you will consider this for your daughter, based on the amazing results other children are having.

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    3. (By the way, my dad shows up on the video at 9:22 :) )

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  5. I am horrified by your account, and am wondering as a stranger and a non-Kaiser customer if there is anything I can do. Do you want change in their decision? Or was this letter simply based in the horror of their inhumane wording? If change, is there contact info strangers could use to help with your case? Or a change.org petition or the like. As an appalled stranger, I'd be thrilled to boost the signal on this if there is anything additive I can do. Good thoughts to your and your amazing, potential filled girl.

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    1. Thank you for being horrified and outraged with me! I am really just appalled by the use of this label for a six year old child with disabilities or any person. I am not sure about my next steps at this point beyond asking people to share and increase awareness about the value of every single human being - regardless of their perceived ability. Thank you again!

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  6. Laurie, my heart is thumping out of my chest for you. You are a powerful source to be reckoned with and obviously so is your daughter. I'm so inspired by you. I'm a speech pathologist specializing in brain injury and after 10 years recently left the hospital system because of story after story of patients needing rehab and not getting it just like your daughter. I made a change to be on the holistic side of healthcare and now I'm a Bowenwork practitioner and wanted to share with you this link about the benefits of Bowenwork for people suffering from seizures. Bowenwork doesn't cure diseases but rather puts the body in an accelerated healing mode ( out of "fight or flight" and into "rest and digest". She will sleep better, it will complement PT, OT and speech therapy. ANother link on this website is locate practitioner by a zip code search. It's worth looking into if you live near a practitioner. Most Bowenwork practitioners treat children for free or heavily discounted. Keep it up, as you've witnessed the body ALWAYS responds, always has limitless potential! Much Love, LIz Charleston, SC
    http://www.bowtech.com/WebsiteProj/Pages/Document/RecentArticles.aspx

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    1. Thank you Liz for reading and for writing! I haven't heard of Bowenwork before but it sounds very interesting and I will look into it!!!

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  7. Hi Laurie,
    I worked in Medical Billing for eight years, including working for a group of physical therapists. I would echo what Michelle said above. I completely agree that the wording is poor (frankly, a lot of insurance lingo is poorly worded!), however, as she said, they are referring to an improvement vs. maintenance therapy. Often, individuals with, for example, Parkinson's or stoke rehabilitation face the same problems. The therapy DOES help them maintain their current level of mobility, but it doesn't improve their current level, so it gets denied. I do not agree with this, but many insurance companies function this way. Michelle is correct, you can find out criteria being used and appeal the decision. I appreciate your sharing your story about your precious, precious girl, and I truly hope you are able to work the insurance out for your amazing little fighter!!! Blessings to you.

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    1. Thank you Sue for taking the time to read and make a comment! The info you provided is helpful - I do think Julia has made huge progress and improvement so I'm still confused by this label - but I will work on understanding and appealing and in the meantime hope to bring some attention to this language and these labels that hurt people. Thank you!

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  8. Hi Laurie!

    As I read your blog, which was shared with me by a friend who actually isn't a parent but recalls all of my blogging, years ago, in regards to similar circumstances, it hit home! There is nothing worse than being told by some unknown people who don't happen to know our children and make decisions based on statistics and such. I even went to a Federal level to try and change the outcome only to be directed to the State level and then to find out more about where this originated and how they "get us" by not paying only to insult us in the process. Seriously, what human being deems a child as having "no potential"? The issue here is the fact that they - the insurance companies - argue, when it is congenital, there is no way to "restore" or "rehabilitate"...most insurance companies have a policy not to cover "congenital birth defects" but meet my son and tell me that there is no hope for him and I just may punch you. Well not really but I WILL EDUCATE you so you understand the FACT that EVERY HUMAN BEING comes into this world with SO MUCH POTENTIAL!!! There is not "word" for our children; they don't fit into the categories of "rehabilitative" or "habilitative" because it IS congenital. What I mean is you can't "rehab" something that was never there; however, I will be danged it you EVER tell me a child needs "habilitative" care when he or she is a developing human being! My argument is: if you cover the services our children deserve they will reach their highest level of functioning possible, therefore, preventing the tax payers from having to pay in the long run because we were encouraged to neglect the developing needs of our children! My son is an 8-year-old survivor of a perinatal stroke who goes out into the world and educates people about strokes in babies, unborn, and children! So take that insurance companies! He inspired my husband and I to educate doctors at one of the top medical schools in the nation about stroke in order to help better diagnose, prevent and even cure strokes in children! So take that insurance companies! My son brings so much joy to us and the world around him every day! So take that insurance companies! My son is in the highest level math class for his grade! So take that insurance companies! My son reads books to his younger sister! So take that insurance companies! My son recycles resources! So take that insurance companies! My son writes letters to his family members who are sick! So take that insurance companies! My son has stood up in front of hundreds of people who have endured a stroke to inspire them to keep working hard! So take that insurance companies! And, you said he wasn't worth it! WOW, you are so wrong! God bless you and your daughter as I totally have been there on NUMEROUS occasions!

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    1. Thanks so much for sharing Jessica - it sounds like you really do get it and have been through this. I agree so much with what you said about our kids not fitting into categories - we are just trying to give them every opportunity possible to be the person they were made to be.Sounds like your son is doing some amazing things - that's so awesome!

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  9. Hi Laurie -
    I'm so sickened by the response of KP - but as a 10 year cancer survivor - I'm never really surprised by the responses of insurance companies. Particularly one with a reputation like Kaiser. But, more than being sickened by their response, I was lifted up & inspired by the love you have for your daughter & her amazing, inspiring spirit & will to live & thrive. Honestly, I'm thinking of printing that beautiful picture of the two of you & putting somewhere where I will see it everyday - to inspire me to push just a bit further; try just a bit harder; love just a bit more; give just a bit more....and yes, smile a bit more. Every time I see it - I would send love & light back out to you and your family to help strengthen your fight. The energy that Julia exudes in that picture could move mountains! The love that exudes from you - in your spirit & in your writing really touched my heart & will continue to bolster your daughter as she continues to thrive. I pray that you are able to appeal & win with Kaiser - but in the meantime, and in the event they succeed in denying coverage - have you considered setting up a fund to help cover the expenses of this and other treatments for Julia? If so, know that I would donate what I could and would certainly use social media to spread the word & encourage friends & family to do the same. Love & light to you, Julia & your whole family. Keep fighting...

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    1. Colleen - your post means so much to me! Thank you for being encouraged by our story and by my sweet daughter! That is all I could ever hope for - that our story can be a source of joy to others!!! You have made my day! And we may have to do some fundraising at some point on our journey - when that day comes I'm sure I'll blog about it! :) Thank you again!!!

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  10. Based on the obstacles and challenges this child has overcome. She quite clearly has SHOWN IMPROVEMENT. I would certainly request what information and what criteria they are basing their decision to not only deny coverage but, to deem an individual with " no redeemable potential"
    Your daughter is an example of strength and determination. If that is not potential I don't know what is.

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  11. Again the restorative potential is specific to the therapy restoring function previously there. The insurance company is not saying your child has no potential. :( again I am so sorry for what you are going through. Insurance companies don't pay for everything. The money that pays the policy's outlined benefits come from the premiums paid by all the members. If insurance companies paid for maintenance care and custodial care, no one could afford it. I don't know if kaiser is for profit or not but the company I work for is a tax paying not for profit and 91 cents of every premium dollar goes to pay claims. It is sad that what is covered many times are very preventable things and makes it so there isn't enough money in the "pool" of premiums to allow for coverage of things like this for children :( it is a broken system for sure.

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    1. I do hear you! It's hard to apply restorative to a child - what would she be restoring to when she is still in the process of developing? I'm not posting that to you by any means - just sort of putting my thoughts out where this confuses me - a little person in the process of growing and developing isn't really a candidate for restoring - just for moving forward. :) But I do hear what you are saying! And also I know our insurance doesn't cover everything - it really isn't about that honestly - I can accept and have accepted many denials - it's just the wording and label I reject! But as an update - I did just hear from Kaiser - my letter reached them today somehow and they acknowledged it is bad wording and not appropriate for any person and they are going to change it - so I'm celebrating that small victory!!! :)

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  12. This just disgusts me. I hope you are able to take steps to (what, appeal?? I don't know) get Julia covered. I am a Life Skills elem teacher, and one of my students has ESES and if someone told me he didn't have any restorative potential I would be livid! And do whatever I could to fight back - so I can't imagine your anger and willingness to fight for your daughter's rights and dignity as a person. I will pray for your family right now!

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  13. Hi Laurie, It's me again...I wanted to share with you that I posted your blog on my facebook page for my son as the inspiration of Brendon's Smile. Thank you for your post as it brought some "things" full circle for me! ~Jessica

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  14. Julia Anne is my beautiful little granddaughter! I just wanted to add a few thoughts from her "Poppy". Julia brightens my days, many times every week, when she plays the piano for me while I have my coffee. If you haven't seen or heard her play, Poppy has a video for you! She is amazing! She loves the piano so much that her Aunt Blakesley got her one for Christmas. Then after she plays the piano for me, we go into the family room and we play ball. She bounces it back and forth with me. She is very accurate with her bounce passes to me! She gets so excited when I get the orange ball. Then she decides she wants to kick it to me. After that, she wants to kick the very large red medicine ball! She kicks it so strong, up to the ceiling sometimes! We have lots of fun together! Then, when it is time to go home, Julia doesn't give me a kiss or a hug...instead Poppy gets a very special "push". Julia grins teasingly and gives me another "push" away. I love it! It is Julia's unique way of saying "I love you, Poppy!" I love you, too, Jules! I will always treasure "Poppy's push!" I hope all of my grandchildren are as beautiful, and fun, and loving, and inspirational, and strong, and determined, and smart, and fun (did I say that already?) and happy, and cute, and adorable, and tough, and beautiful as my granddaughter, Julia! Poppy needs a push! Love, Poppy

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  15. Beautifully said! Our children perform miracles on a daily basis and it is NOBOBY'S right to measure their potential-particularly when they have never met them. Our precious children have unlimited potential and worth and they make this world a better place. I hope you win your fight against this injustice.

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  16. Well said, I would have felt the exact same way if I read that response. There's good advice here. It's important for the therapist/neurologist/developmental pediatrician or whoever is on team Julia Anne to document the progress (and to align it with the criteria you are provided by KP once you ask). My neurologist has made it a point to note, in letters he has written, that OT now will prevent a lot more down the road. I have done much battle with the insurance company, and won; sometimes, it's the-squeaky-wheeled-gets-oiled phenomenon and sometimes, I provided an irrefutable response to their claims. Good luck with this one. Oh, and I LOVE that your dad leaves comments like this.

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    1. Ellen, thank you for reading and commenting! I am a little star struck - I've loved your blog and been inspired by your writing for a long time now. Thank you for your kind words and advice - and yes, my dad is pretty great - we have such a loving support system around us which is such a blessing!!

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  17. Hi Laurie, I don't know if you remember me but I went to high school with Wes. First off, you are an amazing and inspirational mom. Julia is so lucky to have you. I'm glad someone mentioned cannabis oil, and Dr. Shackleford's daughter chimed in. He is my doctor and he is such a compassionate and caring man. I sustained a mild traumatic brain injury almost three years ago and seriously credit medical marijuana with saving my life. I was in intense pain, suffering from horrible insomnia, many neurological symptoms, hallucinations, and I believe I was having slight seizures. All that to say, I'm glad you are considering it as a treatment option. It has made a huge difference in my recovery.

    Also, kaiser sucks. We had them for years and both my kids have sensory processing disorder and they approved four occupational therapy visits each. That's basically enough time to get comfortable with the therapist. We didn't even go as we couldn't afford to pay out of pocket after that. It was so disheartening. The language they've used in your case is simply wrong. I understand what others are saying from an intellectual place but as a fellow mom I am outraged with you. Keep fighting!

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    1. Hi Beth - of course I remember you! Thank you for writing! I'm so sorry for all you have been through - thank you for sharing part of your story here! I will be sure to update here on my blog if we do go the marijuana route - we are just waiting for our EEG at the end of this month to see if the current meds are working. Thanks for sharing how you have been positively impacted - there are so many encouraging stories out there! I'm sorry too for your Kaiser experience and struggles with therapy - as if things are hard enough with sensory issues... I wish the system were easier on families already going through so much. Please stay in touch!

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  18. Thank you for writing this letter. As a mom of a DD young adult I have been told this many times along the way. It's wrong, it's offensive and should not be tolerated. I appreciate every word you wrote though I am sorry that you are still receiving this ridiculous message.

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    1. Thank you for reading and for your comment. I'm sorry you have had to go through this too!

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  19. I'm going to throw is out there, not to scare you, but in hopes that it might help you. (and yes, it's like the 4th comment I've left on your blog today- I just found it and love it!)

    My little brother was a malpractice victim as an infant and was left with brain damage that caused record setting epilepsy. Like your little girl, he had hundreds of seizures a day, most of them grande mal. All the seizure meds in the world never seemed to make a difference- at one point, he was on enough for a 300lb man. He was 4. My mom finally realised she was seeing pieces of the pills, undigested in his diapers, sot hey tested his digestive tract. Turns out he had gastroparesis (stomach empties too slow, so meds don't absorb right) plus Cystic Fibrosis (in addition to lung issues, he didn't produce digestive enzymes). Once they put him on enzymes, they were able to cut his anti-epileptics dramatically and still get much better control on everything. So if her digestion has never been tested, it might be worth checking it out, to see if that's why the meds aren't covering it.

    Any which way, I hope you guys find a solution for these new seizures. My neurological disease causes lack of quality sleep and it bites.

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