My son has cerebral palsy and epilepsy. No one gave us a road map - USA Today

What the report says

USA Today published a first-person essay by Danielle Stephens, a Northern California mother, stroke survivor and disability advocate, describing how her family struggled to coordinate care after her premature twin son survived a neonatal stroke and was later diagnosed with cerebral palsy, hemiplegia and drug-resistant epilepsy. Stephens wrote that after months in the hospital, the family went home with oxygen, a feeding tube and little guidance on how to manage the services, appointments and systems that followed.

The essay uses the family’s experience to highlight gaps in care coordination for children with medical complexity. USA Today cited research showing that 68% of families of medically complex children report unmet care coordination needs nationally, compared with 40% of families whose children are less medically complex. Stephens also wrote that children like her son make up less than 1% of U.S. children but account for more than one-third of pediatric health care spending.

Stephens said her son was referred to California’s Early Start Program through the Regional Center system, but the family still struggled to understand available services and what would happen when programs changed or ended. She later learned from another parent, Mihaela King, about supports such as In-Home Supportive Services, Regional Center resources, Medicaid waivers and California’s Self-Determination Program.

The essay argues that hospitals, pediatricians and specialists should do more than schedule medical care: they should connect qualifying families with coordinated support before discharge. Stephens frames the issue as a systemic burden often left to parents, especially mothers, and says families should not have to depend on chance encounters or knowing the right questions to access help.