Rare Daily Staff

President Donald Trump earlier this month signed into law the Advancing Care for Exceptional Kids Act, bipartisan legislation that creates a state Medicaid option to provide medical assistance for coordinated care through a medical home for children with medically complex conditions.

“Children with complex medical conditions have complex medical needs, and they certainly have better results when they receive coordinated health care,” Senator Chuck Grassley, R-Iowa, said in February when he reintroduced the act in the senate with Michael Bennet, D-Colorado, after its failure to pass in 2018. “The ACE Kids Act would provide a system to ensure that these children under Medicaid receive exactly that kind of coordinated care.”

The ACE Kids Act addresses challenges physicians and families face by improving the coordination of care for medically complex children, reducing the burden on families, and gathering data on complex condition to help researchers improve treatments for rare diseases.

The act, contained within the Medicaid Services Investment and Accountability Act (H.R. 1839), has long been advocated by children’s hospitals. It faced opposition by Medicaid managed care plans and conservatives who oppose adding programs that require new funding.

“Improving the coordination of care is essential in delivery of quality care for children living with special health care needs,” said Amy Brin, executive director of the Child Neurology Foundation. “Not only does it just make sense to support families in the daily management of these conditions, it also has proven health and economic benefits. It actually saves money, time, and resources when coordination of care is well employed with this patient population.”


The ACE Kids Act makes national an approach the Center for Medicare and Medicaid Innovation (CMMI) applied through its Coordinating All Resources Effectively (CARE) award, which involved 10 children’s hospitals with eight different state Medicaid programs, including D.C. The effort, which involved the coordinated care for 8,000 children in its first full year, reduced emergency department visits by 26 percent, cut inpatient days by 32 percent, and reduced overall costs by 2.6 percent, according to the Children’s Hospital Association.

The version of the ACE Kids Act that was signed into law was less ambitious than an earlier version that passed the House in 2018. Modern Healthcare noted that the earlier version would have provided a 90 percent federal match to states to pay for care in hospital-coordinated health homes. The publication said some children’s advocates were concerned that the money would motivate states to send kids to the health home model whether or not it was appropriate for them. The version signed into law increases the federal match rate by 15 percent for two fiscal quarters to help with startup.

Photo: Senator Chuck Grassley, R-Iowa

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