April 18, 2019, was a great day for children! That’s because following an extraordinary effort led by children’s hospitals; the ACE Kids Act was signed into law by President Trump. The ACE Kids Act makes it possible for more than 2 million children with rare and complex illnesses to receive the health care services they need, coordinated and close to home. They will be able to travel to other states to see clinicians who specialize in their diagnoses and treatment.
The legislation allows for the national collection of data, which will provide much-needed evidence to improve care and outcomes. These data allow us to create a classification system for children with rare and complex medical conditions, which payers, providers and the health care system can use. With this information, we can work together to advance the care of these kids and measure what matters most to them and their families.
Many factors influenced the passage of ACE Kids: tireless advocacy by children’s hospitals, patients, their families and advocates for children with rare and complex medical conditions; and bipartisan champions in the House and Senate.
The findings from the CARE Award recipients were provided to Congress to support the case for the ACE Kids legislation. The award, funded by the Center for Medicare and Medicaid Innovation, provided the resources for 10 children’s hospitals to explore solutions to improve care delivery for children with complex medical conditions. As part of their respective projects, they also worked with eight Medicaid programs to develop alternative payment models to support better care coordination. Results included:
- The first national research study to measure the impact of care coordination using standard definitions.
- 2.6% reduction in care costs.
- 32% decrease in inpatient spend.
- 26% decrease in emergency room visits.
- Increased care quality based on family-centered outcomes assessed in over 1,000 families on the Pediatric Quality of Life Inventory tool.
Now, we can apply findings from the CARE award across our community of children’s hospitals to inform and accelerate the work with states and payers to make the changes needed to improve care coordination and outcomes for children with complex medical conditions. Let’s build on this, broadening our quality improvement and policy efforts to affect all children and ensure they have a foundation to thrive.