Medicaid Cuts Will Endanger the United States’ Most Vulnerable Children
Recently, House and Senate Republicans introduced a sweeping package of Medicaid cuts that would fundamentally reshape 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 represents the difference between getting essential pediatric care and going without.
Among the 14.5 million children in the US with special health care needs—ranging from cancer to congenital disorders to severe mental illness—approximately half rely on Medicaid funding for their care. Yet as Congress debates slashing the program, these children have no voice in the room. Instead, they must rely on adults to do the right thing—not just morally, but economically. We now know that delivering care to this population, with the right tools, can improve outcomes and actually lower their total cost of care. The debate in Washington should reflect this reality by advancing, not obstructing, efforts to innovate and expand care for these children.
While pediatric care is widely recognized as a critically important aspect of the health care system, access to such care within Medicaid for children with special health care needs is particularly challenging. I experienced these often-insurmountable challenges personally when my son, Walker, was diagnosed with a pediatric brain cancer called medulloblastoma in 2019.
The US health care system is hard to navigate for the savviest adults, but it is downright impossible for families facing compounding social barriers on top of life-changing diagnoses, all while a child is incredibly sick. On Walker’s cancer journey, in waiting rooms around the country, we met fellow caregivers who were 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.”
These health care system obstacles leave caregivers with fragmented, uncoordinated, and inaccessible care. Hurdles include a lack of rural health care resources, social barriers (eg, language access and transportation), and an overall decline in pediatric care nationwide. Access is further impacted by lower provider reimbursement rates in Medicaid, as providers are forced to make hard choices to balance their panel with the number of Medicaid patients they can affordably serve. When we leave families without access to proper care, especially among our most vulnerable populations, the result is higher costs and poorer health outcomes.
The bill includes eligibility reforms that do not consider the lived experiences and realities of children with special health care needs and their caregivers—realities that are rooted in access to care and resources. As this bill now continues in the Senate, even more drastic cuts are on the table, with the potential to force states to reduce enrollment, benefits, or reimbursement rates. These changes would reduce Medicaid’s ability to respond to the needs of those who are most at risk, especially for children with special health care needs.
The fact is that most chronic conditions are lifelong. A child with cerebral palsy, for example, will always have cerebral palsy. Yet a parent of a child who has a life-long qualifying condition for Medicaid must continually jump through administrative hoops that threaten their access to benefits. The burden of repeatedly proving eligibility should not fall on the caregiver and only adds unnecessary administrative burden and costs to state Medicaid programs. We should be seeking ways to limit this administrative burden, not continue it. Can we let a family establish once that their child has cerebral palsy and not have to confirm a lifelong condition every 6 months? Additionally, language between the House and Senate about potential work requirement exclusions for caregivers differ and raise questions about how these families will be protected from this requirement. It remains true that work requirements would present significant administrative burden on these families to maintain eligibility. This minutia means that even those who are eligible may lose coverage due to missed paperwork or confusing requirements, a scenario that has already played out with Medicaid redeterminations nationwide.
Further, clear evidence shows that when we create ways for parents and caregivers to effectively engage in their child’s care, we can improve health outcomes and reduce the total cost of care for these kids. The proposed cuts to Medicaid currently under consideration would directly undermine this progress. Children with special health care needs are already underserved, and further cuts will not only devastate children’s health, they will paradoxically increase the total cost of care. We must continue to recognize caregivers as a critical part of the health care workforce—providing essential, personalized, around-the-clock care for their child. When they are forced to disengage from their child’s care to work or continually prove Medicaid eligibility, it leads to worsening medical, behavioral, and social issues that drive unnecessary, costly hospitalizations. This care alone has real value—on average, at-home care in the US costs the family $61 000 annually and doubles for institutional care. The tax benefits from mandated work requirements, often framed as “community engagement,” will be vastly outweighed by the resulting increased health care costs and worse health outcomes for our most vulnerable children.
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 proposed $600-billion reduction in Medicaid funding wouldn’t just shrink a program, it would force providers to exit the system and families to navigate a collapsing safety net. The resulting decreased access for children who already struggle to find appropriate medical homes would 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 suffering for the children we should be protecting the most.
About the Author
Taylor Beery is the Chief Innovation & Administrative Officer and Co-Founder at Imagine Pediatrics, where he leads Government Sales, Government Affairs, and New Market Entry. He also works closely with the Imagine Pediatrics Patient Family Advisory Council and external advocates for children with special health care needs to ensure that the company remains committed to putting Children First as we connect and care for the patients and families that we serve, in all the markets we serve.
As the parent of a child with special health care needs, Mr Beery is deeply committed to achieving the Imagine Pediatrics vision of a world where every child with special health care needs gets the care and support they deserve. As part of this dedication, in 2021, Mr. Beery worked with his son Walker to launch Kids Join the Fight, a nonprofit founded to cure pediatric brain cancer and provide care to those battling the disease. Walker lived with medulloblastoma, a pediatric brain cancer, for two years before ultimately succumbing to the disease. In loving memory of Walker, Imagine Pediatrics is on a mission to reimagine pediatric health care in partnership with parents, caregivers, providers, health plans, and community resources—so kids can spend less time in the hospital and more safe days at home and in their communities.
Prior to Imagine Pediatrics, Mr Beery served as an executive and operator across a variety of industries. In addition, he served as Policy Director for the White House office established to help rebuild the Gulf Coast following Hurricane Katrina. Mr Beery earned a degree in Economics from the University of Virginia. He lives in Nashville, Tennessee with his wife and family.
