Navigating insurance coverage for pediatric feeding disorder (PFD) exacerbates the challenges of dealing with a complex medical diagnosis. The ICD-10 code that made PFD an official diagnosis meant getting the green light from insurance is significantly more straightforward today. But many families still face insurance denials.

Anyone who’s ever spent time on hold with an insurance call center or repeated a medical story multiple times to different agents knows how frustrating these calls are. Managing insurance bureaucracy while parenting a child with PFD is exhausting.

Stages of overwhelm are typical for families of children with PFD. Parents of young children in general are often sleep-deprived and stretched thin while balancing parenthood, work and life. Add multiple clinical appointments and round-the-clock feeding sessions to the mix, and it’s no wonder PFD parents are stressed.

How one mom overturned an insurance appeal to for an important treatment

Emily Adams, mother of 6-year-old Morgan and a long-time insurance insider with USI, shares how she battled insurance denials and offers tips for other families.

Morgan had severe reflux as a baby and only ate from a bottle in her sleep. Despite “dream-feeding” all night, she continued to lose weight. At 1.5 she got an NG tube to get the nutrition she needed.

Eventually, Morgan’s reflux improved with the proper medication. Emily then searched for a feeding program that would repair her toddler’s relationship with food. Finding the perfect program at Nationwide Children’s in Columbus, Ohio and securing a spot there was a feat of its own. Getting insurance to pay for it proved just as challenging.

Morgan at that point didn’t have an official diagnosis because the ICD 10 code was not yet established. Clinicians had to get creative with billing codes for Morgan’s therapy sessions. It wasn’t unusual for United Healthcare to deny them. That meant Emily was used to appealing denials by figuring out what code to use and then having Morgan’s clinicians resubmit them.

This came to a head one Monday morning when Emily and Morgan prepared to temporarily move to Columbus to enroll in Nationwide Children’s outpatient feeding program. There was a two-year waitlist for the spot. It was then that the family learned their insurance wouldn’t preauthorize coverage.

Emily, who works in the insurance industry, managed to identify the insurance broker for her husband’s employer. Emily knew she recommended that the insurance agency deny their claim. She reached out and realized the broker assumed the cost would be exorbitant and the need wasn’t great. “Nobody has any idea what the expense is for each of these children because they all need different types of care at different stages,” she says.

Emily explained that the cost of not covering the program would be much higher if Morgan continued to need an NG tube and years of therapy. She convinced the broker to recommend the approval. “It was very last minute and very stressful. I’m in the industry and know how the game is played, so it was extra frustrating to see this happening to my kid,” she says.

6 tips for insurance appeals

Emily recommends the following tips for navigating insurance denials.

1. Be a fierce advocate for your family and child. When the insurance company denies coverage, insist that you’re not accepting no as an answer.

2. Speak to different people. Talk to your employer’s human resources department to find out how to reach the company broker. Explain to them about the treatment and the cost exposure. They may assume that the costs to treat your child are much more than they are. Present a budget of what your kid needs and what the expenses are.

3. Have a peer buddy who’s navigated this before.

4. Let a family member or friend go to important appointments with you. “In fight or flight mode, you’re not thinking clearly. You may not recognize the whole picture and miss a big piece of information,” says Emily.

5. Take detailed notes. “We hear things differently when we’re in stressful situations,” says Emily. A notebook to refer back to meant she could better advocate for her daughter.

6. Lean on your provider to help you advocate for coverage. Many hospitals have a patient advocate or liaison to help families navigate benefits and the appeal process.

When calling your insurance company, here’s a sample conversation Emily recommends using:

I know you don’t understand the complexities of my child’s condition. She needs speech and language pathology, occupational therapy, feeding therapy with a dietitian, pediatric psychologists and nurse practitioners to deal with this illness. Delaying care can delay my child’s progress and make it more expensive.

I need your help getting me to someone who can help all those codes appropriately process. Can you connect me to someone who has a better understanding of billing for complex conditions?

I’ll stay on the phone until you figure this out.

Navigating insurance for a child with PFD is frustrating, but it’s not impossible. Like so much of parenting, says Emily, “You have to be a fierce mama bear, talk to different people and make someone listen to you.”

Click here to download more information about your right to appeal an insurance denial and access a sample appeal letter template for PFD.