A Medicaid model for children that saves money and improves care

Taylor Beery: ©Imagine Pediatrics

Recently, Congress passed a sweeping package of Medicaid cuts that will fundamentally restructure the program — reducing enrollment, adding new eligibility barriers, and threatening the care of millions of children. These are not abstract budget line items or policy shifts. For families of children with special health care needs, Medicaid is the difference between getting essential pediatric care and going without.

Roughly half of the 14.5 million children in the U.S. with special health care needs — ranging from cancer to congenital disorders to severe mental illness — rely on Medicaid funding for care. These children had no voice in the debate over the bill but relied on adults to do the right thing — not just morally, but economically. We know that caring for this population, with the right tools, can improve outcomes and actually lower their total cost of care. The legislation should have reflected this reality by advancing, not blocking, efforts to innovate and expand care for these children.

Access to pediatric care in Medicaid for children with special health care needs is particularly challenging. I experienced these often-insurmountable obstacles personally when my son, Walker, was diagnosed with a pediatric brain cancer called medulloblastoma in 2019.

The U.S. health care system is difficult to navigate for the savviest adults, but utterly impossible for families facing compounding social barriers while caring for a child with special health care needs. On Walker’s cancer journey, we met fellow caregivers fighting the same fragmented system that underserved him, while also facing extraordinary social determinants of health. Walker’s time with these families, as well as his own fight, framed a mission he bequeathed to us before his passing in 2021. That mission is to fight so other kids “don’t have to go through what I did.”

A better model is available

The irony is that as the administration and Congress cut Medicaid, purportedly to save money, they failed to elevate an alternative Medicaid model for children with special health care needs that actually does save money and improve care. Currently, the cost of care for children with special health care needs accounts for nearly 50% of pediatric health care spending. By focusing on improving outcomes, that cost of care goes down, and children with special health care needs can have more safe days at home and in their community. When we shift health care to value-based models supported by policy, particularly for those receiving Medicaid, we’re not only improving the trajectory of health outcomes, but we’re also improving the trajectory of future cost savings for the better.

This is a value-based care framework that recognizes that caring for children requires a personalized, proactive approach, one that puts the child and caregiver at the center of all decisions and activities and provides wrap-around support that leads to more safe days at home.

Too many children with special health care needs do not receive necessary care until they are in crisis. It’s reactive rather than proactive, and many children fall into a repeating loop of hospital admissions and inadequate home care. This leaves caregivers feeling uncertain and unsupported as they care for their child. It worsens outcomes for children and their caregivers, who might feel they are failing in their responsibilities.

This approach might avert an emergency, but it fails to deliver the best possible outcomes for children and caregivers. It usually is limited to clinical care and does not offer the personalized, integrated care many children need. And it does not connect caregivers to community resources that can make their lives easier and help prevent emergencies.

What’s needed is a support system that offers expert care and support virtually and in-home, thus reducing the number of unnecessary trips to the hospital and ED. This care model includes acute and longitudinal medical care, behavioral health care for crisis and long-term support, and help with challenges like housing, food insecurity, and transportation because stability comes from treating the whole child, not just the acute episode. This care is delivered by a multidisciplinary, pediatrician-led team that does not replace the child’s existing team of doctors but collaborates with them to expand access to care and improve experience and outcomes.

Care vs catastrophe

While the general assumption is that more care means higher costs, that’s not the case here. Clear evidence shows that when we create ways for parents and caregivers to engage in their child’s care, we improve health outcomes and reduce the total cost of care for these kids. The cuts to Medicaid will directly undermine this progress. Children with special health care needs are already underserved in our health system, and further cuts will not only devastate their health, but paradoxically increase the total cost of care.

If policymakers are truly committed to serving the most vulnerable while reducing health care costs, the solution is more support and incentives to innovate for children with special health care needs on Medicaid — not less.

The billions in funding cuts for Medicaid will force providers out of the system and families to navigate a shredded safety net. The decreased access for children who already struggle to find appropriate medical homes will be disastrous and contradicts the stated bipartisan goal of Medicaid support for those who need it most. In the short term, it may look like a political win, but the long-term result will be skyrocketing costs and poor outcomes for the children we should protect the most.

Taylor Beery is the Chief Innovation & Administrative Officer and Co-Founder of Imagine Pediatrics, where he leads government sales, government affairs, and new market entry. A passionate advocate and parent of a child with special health care needs, he launched the nonprofit Kids Join the Fight with his son Walker to help cure pediatric brain cancer. Taylor is dedicated to reimagining care for children with special health care needs, ensuring families are heard and supported. He previously held executive roles across industries and served as Policy Director for the White House Gulf Coast rebuilding office.