The expenses include essential daily-use items that insurance may not fully cover. Juanita Panlener, national resource center manager with the Spina Bifida Association, said this creates a significant strain for families.

"Sometimes families with children with Spina Bifida will struggle to pay for catheters or orthotics," said Panlener, "so, items like braces – or sometimes even wheelchairs."

Panlener noted that coverage challenges depend on the type of insurance and state of residence. She said calls for help to her organization most often involve items critical for children to thrive at school and in the community.

For families in these situations, the UnitedHealthcare Children’s Foundation offers grants to pay for medical expenses not covered, or not fully covered, by a commercial insurance plan. Scott Otto, the foundation's assistant executive director, said the grants are available to anyone with commercial insurance, not just UnitedHealthcare policyholders.

"Each family may have two or three or more kids, so each of those children are independently eligible to apply, each year, year over year, up to that $5,000 amount and up to a $10,000 lifetime," said Otto. "So, it's not uncommon for us to help families for each of those children, and over multiple years."

Otto said they can help cover things like equipment, therapies, surgeries and prescriptions. In the past 20 years, the foundation has awarded grants to families of more than 40,000 children nationwide, totaling over $80 million.

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