We have come a long way in pediatric medicine, but not far enough.
For nearly a decade, the chief executives of the nation's children's hospitals and health systems have discussed challenges we face in caring for America's very sickest children, whose life-threatening diseases and congenital conditions put overwhelming burdens on their families.
We have traded painful stories about exhausted parents being forced to quit work to care for their children with complex medical needs. Parents often travel hundreds or thousands of miles to other states in search of highly specialized pediatric care. Families coordinate care for their infants and children who need to regularly see as many as 10 specialists. When things break down, the children often end up in the emergency department due to the unpredictability of their conditions. Duplicative tests, preventable hospitalizations and lengthy stays could be avoided if families had better resources to help manage and coordinate their children's care.
Two-thirds of children with complex medical conditions have health insurance through Medicaid. Although they represent just 6% of the pediatric population served by Medicaid, these children account for 40% of Medicaid's spending on children's care. The financial burden of children with complex illness weighs heavy among us.
Our concern for these families, and a growing body of research on children with complex medical conditions led to a three-year, $23 million project called CARE—Coordinating All Resources Effectively—supported by a federal grant from CMS' Center for Medicare and Medicaid Innovation, part of HHS. With little fanfare, CARE created a new model for caring for the estimated 3 million kids who are considered medically complex.
The CARE funding enabled 10 children's hospitals, including my own, to enroll 8,000 patients and partner with eight state Medicaid programs and 42 primary-care practice sites to set up pediatric "health homes." These sites were designed to support integrated care across providers and increase efficiency.
The results were significant.
The work reduced ED visits by 26%, hospitalizations by 32% and spending by 2.6%—all while improving the family experience. At CARE's conclusion, we knew the potential for savings across a larger population of children and across states showed incredible promise.
With the data from CARE, Congress, eager to support Medicaid innovation, passed the Advancing Care for Exceptional (ACE) Kids Act of 2019, which was signed into law in April. The ACE Kids Act aims to dramatically expand patient-centered, coordinated-care models tailored for children with complex medical conditions across multiple providers and will also make it easier for families to access out-of-state care. Together, CARE and the ACE Kids Act have put us on the verge of launching a vigorous new approach to care management that will improve quality and offer better support for families—all while lowering spending.
However, our work is just beginning.
Unlike Medicare, a nationally standardized program, Medicaid is administered at the state level, leading to variability in eligibility, access and reimbursement.
Full implementation of the ACE Kids Act will occur in 2022, and participation in the program will be voluntary for states, providers and families. This means that states can decide not to participate. As such, educating state-level decisionmakers about the bill, who it serves and its potential to provide high-value care at reduced spending is a key next step. Children's hospitals and health systems plan to lead the charge in encouraging all states to participate.
Implementing the ACE Kids Act will not be easy, but already embedded in Medicaid are strong pediatric benefits that are essential for success. We thank Congress and President Donald Trump for recognizing Medicaid's built-in flexibility that allows for promising innovation.
We ask Congress to keep Medicaid strong by opposing any federal cuts to the program that would be harmful to kids. And we ask states to take full advantage of an opportunity that can make a world of difference for these children and their families.
