Lauren is a New Jersey mom whose daughter, Stephanie, lives with five life-threatening conditions and autism. Stephanie has private insurance as her primary coverage and Medicaid as secondary — and for a three-year stretch, she also had Medicare, thus navigating three, overlapping health coverage systems.

Stephanie (pictured left) at a softball game
A System That Doesn’t Talk to Itself

After Stephanie’s kidney transplant, Lauren and her family arranged for a nurse’s aide to monitor her overnight so the family could sleep, everything scheduled and confirmed before discharge. Then they got home and learned their private insurance wouldn’t cover it after all.

“Medicaid stepped in with the decision she needed nursing care,” says Lauren. “And then the private insurance ended up having to cover it — three years later.”

Three years. That’s how long it took to resolve a single coverage dispute over nursing care that everyone had agreed, before discharge, Stephanie needed. During those three years, Stephanie’s Medicare coverage shifted from secondary to primary, changing the order in which her private insurance, Medicare, and Medicaid were responsible for paying claims. Lauren’s family relied on their county’s Medical Assistance Consumer Center (MAAC) to help navigate the coordination of benefits.

To keep the family afloat while juggling three insurance programs, Lauren relied on home modification support through the Division of Developmental Disabilities (covered by Medicaid) and New Jersey’s Catastrophic Illness in Children Relief Fund. She also points out that by the time these challenges hit, New Jersey had implemented paid family leave. This spared the family the “perfect storm” of lost wages stacked on top of medical bills that they’d faced when Stephanie was born.

Stephanie (pictured left) receiving an award from Commissioner of New Jersey Department of Human Services Carole Johnson (right).
What Needs to Change

Lauren’s proposed fixes come directly from what actually worked for her family — and what should be available everywhere, not just in states with the right patchwork of programs already in place:

  • A dedicated case manager to coordinate benefits. Lauren’s family used their county’s Medical Assistance Consumer Center, a model that should exist for every family juggling multiple coverage sources.
  • Paid family leave in every state. Without it, families face the compounding crisis of lost income on top of medical bills during a health emergency.
  • Fix the coordination gap between Medicare and Medicaid — and protect families from being billed for costs one or both programs should cover. Catastrophic illness funds, like those in NJ and MA, help families survive the fallout, but they don’t fix the root problem: a lack of coordination that leaves families caught in the middle while insurers sort out responsibility.
Why It Matters

Coordination failures aren’t just an inconvenience — they carry a real financial cost. According to the American Public Health Association, 60% of people who experience bankruptcy in the U.S. cite medical expenses as a leading cause.

“If all of these things were in place, families wouldn’t face bankruptcies due to medical debt.”
— Lauren
Your Story Can Help Drive Change

If you or someone you love relies on Medicaid, your voice matters. Share your story here — your experience helps policymakers understand what’s really at stake, and helps us push for a system that actually works for families like yours.

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