This column is reprinted with permission from the newsletter of author and educator Marshall Allen. To get more money-saving health care tips, you can subscribe for free at marshallallen.substack.com.
A note from Marshall: Our health care system might be the hardest on the patients who have chronic conditions. Their care is complicated and frequent – increasing their likelihood of being caught up in an ordeal of overpriced red tape.
That’s why I wanted you to hear from Kathryn Whitaker. Kathryn recently interviewed me for the Hand to Hold’s NICU Babies, Parent Support podcast, which supports parents of babies who spent time in the Neonatal Intensive Care Unit, better known as the NICU. Listen to our conversation here.
Millions of parents can benefit from this information, so please share this column. About 10 percent of the 3.7 million babies born in 2023 spent time in the NICU. NICU babies often endure years of health problems and medical treatment, so the hardship on the families goes on for years.
Kathryn is a Texas mom of six, including one child who’s undergone multiple operations after spending time in the NICU. In this column she offers money-saving advice that she’s learned in her years navigating the health care system as a NICU parent. Many thanks to Kathryn for sharing her expertise!
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If your baby gets admitted to the NICU you will understandably feel overwhelmed, exhausted and scared.
Then you will get buried in medical bills.
My fifth child was a NICU baby. He underwent an emergency surgery during the initial hospital stay, then seven more operations post-NICU. We racked up 16 pediatric specialists!
Desperate for help, I turned to other NICU moms to learn how to handle the physical, medical, emotional, psychological and financial toll on our family. Insured families hit their out-of-pocket max in the first couple of days in the NICU. But they are likely not prepared for the scores of follow-up specialist appointments, surgeries, therapies, procedures, lab work and imaging. It may go on for years. All that intensive medical care can have a dramatic effect on insurance coverage and out-of-pocket costs. For uninsured families, programs like CHIP (Children’s Health Insurance Program) and SSI (Supplemental Security Income) can be accessed by the NICU social worker and may cover all, or part, of your medical expenses.
Here are six money-saving tips I learned the hard way that will be helpful to you:
- If possible, avoid hospital treatment. Prior to a procedure or surgery, ask the specialist if it can be done outside the hospital — which is always the most expensive place to receive care. Some surgeries can be moved to an outpatient center. Labs may be drawn offsite and billed at half the cost. It may be possible for procedures to wait until later in the year when your family has met its deductible. Explain your circumstances to your pediatric specialist and see if there are less expensive treatment options.
- Beware of office locations that are linked with hospitals. Before you schedule an appointment, always ask this this important question: “Is your office a hospital-based facility?” Often, a regular-looking office building is connected, payment-wise, to the hospital. That can lead to a much bigger bill. Sometimes, you can see the same doctor, at a different location, and it’s billed as a regular office visit. And if they bill you for a bogus facility fee because it’s linked to the hospital, take Marshall’s advice and ask to have it removed from your bill.
- The in-network vs. out-of-network conundrum. Always check with your insurance company to confirm that your hospitals and doctors are in-network. If your child goes to an in-network doctor, the No Surprises Act protects you from getting hit with unreasonable bills from specialists, say, an anesthesiologist, that’s out of network. We got in the habit of calling the insurance company before any procedure to confirm who’s in-network. If you get hit with unreasonable “surprise” bills in these circumstances, use Marshall’s guidance to fight those bills. Ambulance rides are never in-network, and they do not play games when it comes to collecting their bill. That gives the term “ambulance chaser” a whole new meaning. But again, use Marshall’s guidance to fight those bills, too.
- Push back if they ask you to pay up front. If you have insurance, surgeons and specialists should send their claims to your insurance plan before billing you. But they will often “require” half or full payment prior to performing or even scheduling a surgery. Coincidentally, that’s exactly what happened to us just two weeks ago as we prepared for our son’s eighth surgery. That puts you in a tough situation unless you have a bottomless bank account. (Sometimes this happens because your insurance company and specialist have incorrectly classified the procedure as ”elective,” such as a hernia repair. But these cases are necessary for your child’s quality of life, and those “elective” procedures cannot be postponed indefinitely.) You have wiggle room when they are asking you to pay up front. Just last week I asked to speak to the billing manager to work out a payment plan without postponing the procedure. And it worked. Or, you can ask to pay a minimal fee to get it scheduled and then pay the balance after your insurance plan has processed the claim. This often takes quite a bit of persuasion, but stand your ground and appeal to their kindness and decency and ask for what’s possible. They are trained to collect payment, no matter what, but when you push hard enough, they will often let you talk to a manager and work out a plan.
- Write it down. NICU parents are typically juggling appointments, procedures and therapies with a number of different providers. It’s daunting to track what is covered, at what rate, by your insurance or government agencies, like your state’s Department of Health and Human Services and Department of Developmental Services which help cover medical equipment or provide in-home nursing care and therapies. Layer on sleep deprivation and piles of dirty diapers and it makes for an overwhelmed parent. My antidote? Keep a three-ring binder with tabs or an electronic spreadsheet for bills paid, bills unpaid, doctor summaries, action items and all phone calls/interactions with billing offices and government agencies. That allows you to document the details from each call and the arrangements you’ve made with each billing entity. So, when a billing office or insurance company tries to backtrack on what they offered, you have documentation.
- Ask for a case manager. Does your child have extensive medical needs or are the circumstances especially overwhelming? Then ask your insurance company for a case manager if you’re a high-cost patient (virtually all of them have one). They are a resource that’s already covered by your benefits. If you wonder about that latest claim and if it should be appealed, ask your case manager. What exactly is required for a successful appeal? Ask your case manager. Is there a different way to get the same outcome? Ask your case manager. They can sometimes strip away some of the red tape, giving you better access to resources, helping with appeals and giving better answers within your insurance company.
These resources are also available to keep you organized and feel seen when you’re in the trenches (contains affiliate links).
- Hand to Hold. This national nonprofit provides personalized emotional support, education and community to parents who have had NICU children or who have experienced the loss of a baby. Resources include support groups, 1:1 support, bereavement support, and educational resources. Assistance is provided in English or Spanish at no cost to families.
- NICU Babies Parent Support podcast. I host this podcast for NICU parents, covering timely and relevant topics for all stages of the journey.
- My Mejo. This electronic medical journal allows you to keep all your child’s medical information in one place (specialists, insurance, allergies, procedures, emergency contact, etc.). So instead of filling out the same information in dozens of doctor’s offices, you fill it out once and then it can be shared with your specialist. Plus, it’s a great resource for your child as they grow up and move from pediatric to adult specialists.
- Everything No One Tells You About Parenting a Disabled Child by Kelley Coleman. This book is for anyone who has a medically fragile child. Her chapter on medical billing, insurance and government assistance is such a great resource.
While you might be feeling overwhelmed as a NICU parent, heed Marshall’s advice, tap into those resources and know that you aren’t alone. You CAN learn to be an advocate with a little patience and confidence. The knowledge that you gain will aid you, and your child, for the rest of your life!
