Fun with Insurance Appeals and Complex Medial Care

First, my opening disclaimer: I’m not a doctor or a lawyer, so this is all anecdotal, but I think there are some valuable takeaways. I hope some of this will be helpful to someone else — our medical/insurance odyssey has been stressful, but if my stress can lessen someone else’s that would be gratifying. Also, I don’t want this spotlight on our medical adventures to result in unnecessary worry — my daughter is receiving excellent care overall, and her conditions are, for the most part, fixable or reasonably manageable. She’s a happy, thriving little girl, and she’s going to be just fine. With all that said, let’s get into it.

One of my daughters has what I’ve learned are termed “complex” medical needs. In the long run she’s going to be okay, but in the short term I’ve had a crash course on patient advocacy and navigating the US medical insurance system. I’m not going to go into details on her diagnoses out of concern for her privacy, but I’d like to share some of the lessons I’ve learned, first about the insurance appeals process, and then about advocating for a patient with complex care.

The Dubious Utility of Insurance Case Managers and Internal Appeals

When my daughter was born, the insurance company tagged her case as being complex, and assigned us a “case manager” — let’s call her Felicia. When she first called, I was naïve enough to be relieved. After all, she seemed very pleasant, and was making all sorts of broad claims about “if you have any questions, just ask”, and “I’m here to help”. Fast forward to 18 months later, and while that case manager was always unfailingly pleasant with me, the most she ever really seemed to be able to offer was various sympathetic noises, never accompanied by any actual answers or results. I now think the whole purpose of this person was to put a friendly face on a seemingly soulless, corrupt industry, so that I would get less angry with their representatives when they tried to deny necessary care or the like. If I’m being generous, I’ll also admit that having a direct number for someone familiar with the case saves explanation time, even if she never was able to actually provide any substantive assistance.

The funniest (by some definition of that word) interaction with Felicia came when my daughter’s home nursing services were unexpectedly denied coverage. I called Felicia up and asked her how this could happen, given that nothing had changed medically, and we’d been approved before. She told me that really wasn’t her department, but did I want her to file an internal appeal on my behalf? Sure, I said. What followed, I don’t really know. She could have actually filed an impassioned appeal on behalf of me and my daughter, but I had zero transparency into the process. What I saw was that I approved the appeal one day, and got a call the next saying it was denied. This could easily have been one of those instances where the car salesman says “I don’t know, let me talk to my manager,” goes and gets himself a coffee in a back room, and then comes back to tell you that his “manager” wasn’t happy about it, but he managed to talk him around.

The bottom line is, I have very little faith in the internal appeals process, because they just go back to the same doctor who made the initial decision, and they’ve got very little incentive to admit they were wrong the first time. In fact, when we finally, after two weeks of being given incorrect phone numbers and other delays, got their representative to talk to our daughter’s doctor for a peer to peer review, the doctor representing the insurance company opened the call by saying that this was a waste of everyone’s time and nothing our doctor said was going to change his mind. Which, even if that’s what someone’s thinking, it takes a lot of arrogance and confidence in one’s invulnerability to actually say that on a recorded phone call.

The External Appeals Process

But, there’s hope! The internal appeals process appears to all be a huge waste of time, as far as I can see, but there’s an *external* appeals process. If you’ve gone through all the hoops offered to you within the insurance company’s system, you can, as a last resort, apply for an appeal with the Department of Insurance in the state in which your insurance is held. To be clear (because Felicia wasn’t sure what the answer was), the state you do the appeal in isn’t necessarily the one you live in. My husband works remotely, so we did our appeal in the state his employer is based in, not the one we live in. Also, of course, this process will vary somewhat from state to state — I can only speak to the process we went through.

Great news! The representative we dealt with from the state was friendly and helpful, the turnaround from us filing to them making a decision was quick, and the decision went in our favor. Sure, it’s been 5+ weeks since that decision was made and we have yet to be reimbursed for any of our out of pocket expenses for continuation of the denied services, but that’s a different conversation. Legally, they have no choice but to pay eventually, and I’m lucky enough to be able to ride out the wait.

The tricky bit was the research that went into filing that appeal. We talked with a lawyer before filing, and they informed us of something that I didn’t actually see on the paperwork. (I am not a lawyer disclaimer for this part — I’m not providing legal advice, just letting you know what I was told.) He said that, if the case went into adjudication, the only evidence we’d be able to cite was whatever documentation we submitted with the external appeal. So, it was absolutely critical that we submitted absolutely everything we’d need to make our arguments. All told, I submitted 20 separate documents as a part of our external appeal. What you’d need to submit for your case might be different, but here’s a list of what we included in our argument for the necessity of nursing care:

· A cover letter with an overview of the case, documentation of the timeline of events with us and insurance, and an explanation of the consequences should care be denied

· Letters from my daughter’s primary care physician and all relevant specialists about the risks of not getting the denied care

· A letter from her daycare’s director — having care denied was going to prevent her from being able to attend, and I wanted to document the progress she’d made there, and the benefits of socialization at an early age

· The Early Intervention Services annual evaluation and report on her developmental progress (which my EIS point of contact was happy to provide)

· PDFs explaining the medical care my daughter receives, obtained from instructional links on children’s hospital websites

· The documentation the insurance company gave me of the appeals progress, and their original denial letter

· Explainers of my daughter’s medical conditions, obtained from online medical sites like nih.gov

· Medical journal articles explaining the importance of peer socialization for toddlers (given that no nurse would mean no daycare)

· Medical journal articles explaining the medical risks of my daughter getting improper medical care (given that the alternative to nursing would be that she’d be cared for by someone without professional medical training)

Most of these resources are easy to get — just a google away. Finding the right medical journal articles can be trickier. To figure out what articles I needed, I first made a list of what bad things could happen due to care being denied. Then, I found an article specific to each concern.

If you know a doctor who can help you find the right articles, that can be helpful. Failing that, I just went through Google scholar results until I found something that seemed relevant. In some cases, the full report’s pdf was available, in other cases there was a paywall and all that was available for free was an abstract. For the most part, if I kept looking, I could find something that wasn’t too expensive to get that covered the argument I was trying to make.

Insurance Conclusions

The main takeaway I’ve got from my dealings with insurance is, everything they do takes forever, but if you can, fighting them mostly takes stubbornness and an ability to wait them out. If they deny coverage, or claim something is going to be out of network that shouldn’t be, don’t automatically let that be the final word — ask for clarification, question how decisions were made. It’s a frustrating process, but persistence often pays off, and remember you’re not alone in these struggles.

Patient Advocacy in Complex Cases

The other side of our journey has been advocating for my daughter when it comes to her medical care. This section focuses on all the worst moments in my interactions with medical professionals caring for my daughter, so to be clear: the majority of the doctors we’ve worked with are wonderful people who’ve provided excellent care. But no institution or individual is perfect, and along the way there are bound to be mistakes or misunderstandings.

You’ll often hear doctors say things like “no one knows your child as well as you do.” Sometimes they’re just offering a platitude to reassure you, sometimes they really believe it. But, in a case with complex care, especially a rare condition as with my daughter, there’s an actual medical truth there. The more doctors there are following your child’s case, the more likely it is that you are the individual who knows the most about their care and medical history.

What does this mean? It means that you’ll see things they won’t, and if you think they’re making a mistake you need to speak up. In my daughter’s first year, there were three different instances where I had to intervene in her medical care, and each illustrates a different facet of what it means to advocate for a patient.

First, complex care frequently comes with pretty complicated medication regimens. I find the drug interactions checker at drugs.com to be extremely helpful. After an instance where a negative interaction almost went unnoticed, I always make sure to use one of these tools to check for interactions before my daughter is discharged from the hospital or put on new meds.

Second, when you’re in a hospital, there’s a whole team of doctors involved in a patient’s care, and they can come and go from day to day. If there’s a problem they’re trying to solve, they might lose track of what’s been done already. If you think they’re circling back around to something that was tried and failed before, speak up. At one point I had to go so far as to refuse my consent for a treatment. The doctors tried to tell me that they know it’s difficult, etc, but I knew that what they were proposing had been tried before with negative repercussions. I held firm until they had to actually stop patronizing me and listen to my concerns. Then, they found an alternative approach and congratulated themselves on “a good catch.” (The nurse spoke up and reminded them that it was the mom’s catch, not theirs, but the important part is that it was caught.)

Third, in complex cases things may present atypically, which means that standard courses of action might not be appropriate for your child. Of course, in a new situation, defer to the medical professionals, but if you’re aware of aspects of your child’s case that present atypically, make sure that the doctors know about them. If it seems like they’re not listening, keep telling them. Don’t let the lab coats intimidate you — your knowledge is valuable.

To conclude on a more positive note, make sure you explore the hospital resources available to you. Medical drama is stressful, sometimes traumatic. Many hospitals offer counseling, both for patients themselves, and for caregivers and siblings. The child life specialists often have stashes of toys to distract siblings, or to help them explain medical conditions and procedures to kids who might be scared or confused by more standard medical explanations. If you’ve got questions or concerns, the social workers are also there to help and provide resources. It took three tries, but each time my daughter was hospitalized we got a new social worker who applied for nursing services for us again, and eventually we got approved. Ask if any nearby hotels offer discounts for families of patients. If you’re finding yourself staying overnight unexpectedly, the hospital often can provide you with basic toiletries, laundry facilities or services, and sometimes small lending libraries with books, movies, and games. Children’s floors also often have play rooms with toys and art supplies. If you ask, they might also be able to provide crib toys to play soothing music, rockers, or swings. If your kid is stuck in a crib or bed for a long period of time, ask about physical therapy services. When in doubt, ask the nurses — they can point you to services you might otherwise not be aware of, and in general they’re invaluable resources.

In Conclusion

If you’re on your own odyssey through the labyrinthine insurance bureaucracy, I hope this has been helpful. At the very least, I hope this helps you feel less alone in that journey. If you’ve got any tips of your own to add, feel free to post them in the comments. These are strange, stressful times, so I hope everyone’s staying as safe and sane as they can.