When Insurance Denies Your Child’s Treatment

Eight days before Christmas, our health insurance told us they would deny our son’s critical mental health treatment, effective mid-January, on our wedding anniversary. 

Merry Christmas!

I use the word critical to describe the treatment our son needed because, while it is not exactly a matter of life and death, it is important, expensive, and rare. His condition has improved significantly because of it, and we’d been feeling more hopeful about his health than we had in years.

“Hello, I hope you are doing well,” the email read. “Our utilization management team has determined that the treatment needs for your child are not meeting medical necessity. If you disagree with this decision, you have the option to appeal. Additionally, the provider can request a peer-to-peer review with our medical director.”

You can bet that we disagreed with this decision. But we didn’t immediately register its ramifications. We had other important things going on—working, caring for the rest of our children, putting food on the table, attending to Advent.

When your children have experienced an early childhood full of adversity, like ours have, the effects are long-lived and pervasive. You make hundreds of visits to pediatricians, specialists, psychiatrists, psychologists, therapists, pharmacies, group classes, workshops, conferences, educators, school districts, social workers, hospitals, and consultants. Each visit has its own set of phone calls, emails, privacy agreements, referrals, releases of information, billing, pre-authorizations, insurance estimates, health portal logins … You get the idea.

This administrative burden on people who are already sick results in new harms. A Wall Street Journal writer compellingly described how chronic aggravations of this kind can contribute to a kind of madness.

None of this justifies violent retaliation, like the recent murder of a health care CEO. I do not condone personal revenge or killing. I do understand the deep, painful frustrations that cause many to view the alleged murderer as a kind of Robin Hood of healthcare. The denial of an important medical claim, especially for a child, almost always causes a certain amount of freaking out.

This is an upheaval with major consequences. Most obviously, of course, the child doesn’t receive crucial care. Less obviously, you suffer a blow to your idea of being able to fulfill a parent’s basic job: to protect and provide. You find yourself in a hellish place where you are utterly responsible and ultimately powerless.

These losses often play out in a way that resembles the initial stages of grief: existential denial (“They can’t do that”) and anger (“How dare they”). It is tempting to spend a lot of time and energy in these states after hearing about what insurance won’t cover. The adrenaline can help propel you through the effort needed to fight for your child’s safety.

But not this time. This time I experienced a kind of withering. It was not my first rodeo. I knew by now that the company very well could and most probably would deny the treatment. I also wasn’t angry, exactly. I was fallen myself—so it made sense to me that “the insurance people,” in their fallen way, produce a fallen system that produces harms for vulnerable children.

Plus, it was the Christmas season, and we didn’t have a tree yet. We were hosting dinner with family in a few days. Our oven had conked out. This time, I had no fuel to flare my indignation.

Even so, my spirit was beguiled by a different response: frenetic effort. We will fight this. We will beat them at their own game. We will crush them with a preponderance of evidence. Open season on determinations of medical necessity!

Effort is seductive—so many avenues of action look promising. You can make urgent calls to the insurance case manager. You can send them emails. You can call customer service. You can ask to speak to their supervisor. You can draft an appeal. You can append supporting documentation. You can “document, document, document.” You can call all the providers within a hundred-mile radius for alternatives. You can recruit experts to corroborate medical need. You can find out whether the insurance uses the InterQual or the Calocus-Casii criteria to determine medical necessity. You can call your state’s insurance ombudsman. You can call the state commissioner on insurance. You can call your elected representatives. You can scroll through CoverMyMentalHealth.org. You can retain a lawyer. You can mount a GoFundMe for out-of-pocket medical expenses in case you need to cover the tens of thousands of dollars that the treatment costs (sometimes private pay is an option; sometimes it is not).

I did some of these things, but I confess that I did not do them all. It’s not actually that easy to carry out such a campaign or retain a lawyer in the final weeks of the calendar year. There just aren’t that many business days at December’s end; everyone is on holiday and sending you automatically to voicemail.

I did not know whether I was called to drop everything to contest this decision in the last week before Christmas. In church, we had just lit the fourth candle of the Advent wreath, representing peace. “We celebrate the announcement of the coming of the Prince of Peace,” the worship leader had said, soothingly, “and the greatness of God’s love revealed through the Christ child.”

Perhaps I was affected subconsciously by all this peace talk. But I found I just couldn’t keep feuding, not in the midst of the holiday, even if I deeply disagreed with our insurance’s decision. I didn’t know whether that was foolhardiness or faith. Maybe it was both.

Instead, two images kept coming to mind. One was of the prophet Elijah coming to the end of his rope, running away, and collapsing in the wilderness, only to be fed fresh baked bread and cool water by a ministering angel (1 Kings 19). And the second image was of the weaned child of Psalm 131:2, not concerned with matters too great or wonderful but calmed, quieted, and content with its mother. 

I don’t want to hyperspiritualize our situation or paint ourselves as the prophets of old in a deadly fight with the Jezebel of health insurance. Yet I did feel keenly that the journey had been too much and that there was just not much we could do about any of it.

I also suspected that the allure of frenetic effort was more about distracting myself from the more grievous reality—that God could bring healing to this child if he wanted to, instantly and involving no insurance at all. Is the Lord’s arm too short? What does the appeal process look like for years of unanswered prayers?

I remembered King Jehoshaphat’s prayer in another situation of bewilderment and powerlessness. “Our God, will you not judge them?” he prayed. “For we have no power to face this vast army that is attacking us. We do not know what to do, but our eyes are on you” (2 Chron. 20:12).

He and his people stood before the Lord. Then they heard, “You will not have to fight this battle. Take up your positions; stand firm and see the deliverance the Lord will give you, Judah and Jerusalem” (v. 17).

Maybe I am not withering at all. Maybe I am taking up my position and standing firm, watching.

Maybe this watching is shaped by the example of Mary, whose faithfulness to the purposes of God meant watching her beloved son suffer and die, with no life-saving intervention possible from her effort or anyone else’s. Within this tangle of hopelessness, the hope was present, invisibly at first. But for those watching, God would give eyes to see something completely new.

The Lord has not yet brought our children healing, at least not in a way that I can clearly see. And he may not. That is a matter too wonderful for me—and I merely a child. I wish I knew how to write an appeal to end all appeals and to smite the insurance executives with a peer-to-peer review the likes of which they have never seen. But I don’t know how to do that either. 

Now that Christmas has passed, my meager efforts will have to suffice. I will write the appeal I know how to write—this is the position I have to take up, the only way I know how to stand firm and watch for the deliverance the Lord will give. We’ll see how it goes. 

Wendy Kiyomi is an adoptive parent, scientist, and writer in Tacoma, Washington, whose work on faith, adoption, and friendship has also appeared in Plough Quarterly, Image, Mockingbird, and The Englewood Review of Books. She is a 2023 winner of the Zenger Prize.

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