This story was originally published by CalMatters. Sign up for their newsletters.
Child health in California is approaching a critical tipping point. The number of children with medically complex conditions — estimated at 358,000— is expected to double over the next decade, as medical advances enable more children with serious conditions to survive.
Children with medical complexity live with chronic illnesses, significant functional limitations and frequent hospitalizations. They rely on highly trained pediatric subspecialists who understand how illness uniquely affects growing bodies and developing minds.
For many of these children, California Children’s Services provides a lifeline connecting families to pediatric specialists when a child has an eligible condition and meets income requirements. Children’s Services providers bring strong expertise in managing complex conditions, such as sickle cell anemia and cystic fibrosis.
Yet that lifeline is fraying. Nearly 90% of Children’s Services pediatric specialists are expected to retire within the next five years. That loss will hit rural and underserved communities hardest.
Add to that the impact of state and federal budget cuts on patient care. More than 400 hospitals already have laid off 3,400 health care workers as of March, with more expected in the future.
How did we get here?
First, fewer students are choosing career paths in pediatric subspecialties because of crushing post-graduate debt and lower lifetime earnings compared with specialties in adult medicine.
This disincentive is poised to worsen as the U.S. Department of Education considers excluding nursing and other health professions from its list of eligible roles for higher levels of graduate student loans. Even for those who have a passion for caring for children, that decision could make pediatric careers financially impossible.
Second, pediatric subspecialty care is becoming increasingly regionalized. Hospital mergers and health system consolidation often centralize services to maintain patient volume and expertise. While this may make sense on paper, it forces families to travel long distances for care — an impossible burden for many parents juggling jobs, transportation challenges and medically fragile children.
The Rural Health Transformation Program is an example of a federal initiative to strengthen health care workforce shortages, particularly in rural communities. These funds can be used to recruit and retain skilled pediatric providers to practice in areas of community health, and to develop coordinated partnerships with health care systems and pilot innovative models of care.
Third, inadequate reimbursement is pushing health care providers out. Medi-Cal payments lag far behind Medicare. For example, reimbursement for placing a breathing tube in a child’s airway is roughly 60% lower under Medi-Cal than Medicare, despite the skill and complexity involved.
The pediatric care crisis demands collective action. Caregivers must continue to share their stories to make clear what’s at stake when access to pediatric expertise disappears. Policymakers must increase funding for programs, such as the Golden State Pathways Program, that support early engagement and expose health care and medical students to the breadth and purpose of pediatric careers. And collaboration between families, clinicians, educators and advocates can turn lived experience into meaningful reform.
Some argue that expanding the pediatric workforce diverts resources from adult and geriatric care, particularly as the population ages. But this is a false choice.
Thanks to programs like California Children’s Services, we are managing childhood chronic illness better than ever. Investing in children’s health and addressing issues early offers significant long-term benefits, including potentially easing future strain on adult health care systems and reducing overall health care costs.
Technology also may offer efficiencies — through telehealth, diagnostics and care coordination — but it cannot replace the clinical judgment, hands-on skill and human connection required to care for medically complex children and their families. Technology should support pediatric specialists, not be mistaken for a substitute.
No family should face the terror of wondering whether expert care will be available when their child needs it. By strengthening the pediatric workforce and safeguarding access to specialized care, California can build a health care system worthy of its children — today and for generations to come.
