Letter

Dear Kaiser Permanente:

Late last week, I received an email from the Kaiser speech pathologist I was referred to for my son. She was writing to inform me that Kaiser had made the decision not to cover Alex’s speech therapy because it was “not medically necessary.” She said she had noticed more referrals being denied for children whose diagnosis centers around their premature birth. She immediately suggested I appeal.

I have never experienced this aspect of the insurance industry personally, although of course I have heard horror stories about it, about being denied coverage unexpectedly, sometimes resulting in gargantuan medical bills. Fortunately for us, this is not yet the case. The stakes are not financial here, but instead they center around the quality of life of my son. I for one have always been of the opinion that although Alex has been behind the benchmarks in certain areas of his communication, he should eventually get to where he needs to be. I believe he’s plenty smart enough. Perhaps I’m a bit biased through my rose-colored dad goggles, but his intelligence has never been the question. His problem has been his learning style. He memorizes the sounds of language first, mimics them accurately in long stretches, his favorite books and movies coming back to us in great swaths at all hours of the day, with minimal meaningful communication in between. He can recite the entire opening sequence of Shrek verbatim, but I cannot make him understand that I don’t want him to dump his pitcher of bath water onto the floor. I have not been able to teach him to dress himself, or potty train him, or other milestones he is “supposed” to have reached by now, because there is a communication barrier preventing me from explaining to him that these developments are possible.

Through previous therapists, we have learned that Alex is a gestalt language learner. He is also hyperlexic. He figured out letters and the sounds they make at two years old, and now at three he can sight-read all of the most common words he encounters. If it’s an unfamiliar word, he knows how to sound it out and give a shot at its pronunciation. But it’s all music to him. Sounds in a certain sequence. The meanings behind the words are coming much slower to him, and his use of words to represent concrete ideas is far behind where he should be. He needs help.

Gestalt language processing and hyperlexia can be indicators of autism. His primary care doctor, like all of his previous therapists, is not yet willing to use that word, but all of his care providers have emphasized how important they believe speech therapy is to him right now, at this stage of his development, including all of the Kaiser staff he’s seen since I was able to put him on the “good” insurance plan, the most expensive plan my job offers with supposedly the best coverage. But according to the rejection letter I received today, the need for speech therapy has to be a result of something in order to be covered, specifically a “disease, surgery, injury, congenital anatomical anomaly, or prior medical treatment.” Speech therapy is not covered if the need stems from a condition you are born with, an inherent psychological or mental condition, so even if Alex is eventually officially placed on the autism spectrum, it sounds like you still would not cover his therapy. Apparently “medically necessary” does not include developmental disabilities.

My question is: Why? I do not understand why you think it matters what caused the problem that needs treatment. I am not just being obstinate here, either. Yes, after hearing the news, I was extremely put out, angry, eager to give you all a piece of my mind laced with expletives I would have invented for the occasion. This is my son, after all. Naturally I am protective of him, perhaps even more than most parents, having watched him cling to life after being forced into a 17-week head start. But it truly does not make sense to me. Are you saying there has to be a guilty party? Someone or something to blame for the condition? Are you worried that people would otherwise try to scam you for unwarranted therapy, that having a culprit to point the finger at somehow guarantees that the need is genuine?

I chose not to call and vent my anger on whomever picked up the phone. I know you are just doing your jobs (even if the “you” in question here is likely just an algorithm designed to shear off claims that do not fulfill the specific technical requirements outlined in your coverage, in order to save the company a few dollars by counting on a certain percentage of people to not have the time or inclination or wherewithal to appeal). And even though I am appealing, because I definitely have the inclination and wherewithal if not exactly the time, and because everyone besides me insists that therapy for Alex is crucial at this stage of his development, specifically the people who are trained to care for children with his specific problems, including your own in-house specialists, which I was led to believe was the entire appeal of the exclusive Kaiser Permanente system, that your doctors are a part of that system and therefore coverage headaches like this one should be impossible—despite all that, I can see clearly that the language in my policy excludes him.

But now I assume a real person is reading this, that a human mind will be tasked with either granting the coverage based on this appeal or rejecting it, so again I have to ask: Why? Why reject treatment for a demonstrated need, just because the cause of that need cannot be isolated and verified? The need does not go away. I still have to find a way to address it. Alex’s PCP tried to explain your decision by saying premature or traumatic birth is not a valid cause because “many children born like that would be developmentally normal.” I can only imagine getting into a car accident one day and having my injuries treated at a Kaiser emergency room, only to get the full bill in the mail later on with the explanation that “many people in car accidents are just fine.”

Perhaps this saves you some money in some specific instances, but the only possible outcome here for my son and me, and people like us, is that I drop your coverage and go with someone else.

Although I see how your coverage excludes my son, I can also see the room for interpretation. You do have a choice here. Your SLP suggested I remind you that “premature births have been linked to language delay[s] compared to children born full term,” so I have included links to a few recent studies below. Or, like a car accident, you could categorize his traumatic birth as the inciting “injury.” You could say the fact he was nearly born breech, caught in the birth canal at the neck, and thus had to be extracted via an emergency Caesarian before he had so much as developed skin thick enough to resist being ripped like tissue paper in the process means that his current condition is, in fact, due to a “surgery.” You could even say the 149 days he spent in the NICU that subjected him to multiple infections and corresponding antibiotics, courses of steroids and other drug treatments, minute-to-minute and occasionally extreme variations of blood-oxygen levels, and the simple rigors of ordinary dry-air gravity when he should’ve been floating in fluid, you could perhaps say that all of that amounted to the “prior medical treatment” that undoubtedly affected his brain development, resulting in his current developmental delay, the unavoidable side effect of saving his life.

Or, you can choose to set him back another six months while I wait on my next open enrollment period.

Whatever you decide, please, at the very least, examine the rationale behind your decision to insist on placing the burden of coverage on the cause, not the effect. I can see the short-term benefits of this policy for your company, but I can’t imagine it will work out well for you in the long run. Sweeping aside patients with syntax is the sort of customer service failure that is not sustainable. Word gets around. The “good” insurance plan is only as good as their reputation.

Sincerely,

Aaron Fortkamp

Please refer to the studies below regarding the correlation between premature birth and developmental/speech delays.

“Neonatal Brain Microstructure and Machine-Learning-Based Prediction of Early Language Development in Children Born Very Preterm”

https://www.sciencedirect.com/science/article/abs/pii/S0887899420300771

“Comparison of Child Development Between Aterm and Premature Birth at Age 2-3 Years Old”

http://103.114.35.30/index.php/JKM/article/view/1976

“Language in Preterm Born Children: Atypical Development and Effects of Early Interventions on Neuroplasticity”

https://www.hindawi.com/journals/np/2019/6873270/

“Neurologic Consequences of Preterm Birth”

https://link.springer.com/article/10.1007/s11910-018-0862-2

And this one especially: