• Article
  • July 28, 2016

Testifying on Behalf of the ACE Kids Act

The ACE Kids Act moves forward in the legislative process with a hearing on Capitol Hill. Here's what it was like at the hearing.

By Rick Merrill

Rick Merrill, seated far right, participated in the July 7 House Energy and Commerce Committee hearing for the ACE Kids Act in Washington, D.C.
Rick Merrill, seated far right, participated in the July 7 House Energy and Commerce Committee hearing for the ACE Kids Act in Washington, D.C.

As a national community of children's hospitals, our journey to improve care for children with medical complexity began in earnest six years ago, evolving into the ACE Kids Act (Advancing Care for Exceptional Kids Act). In 2014, we celebrated the introduction of the ACE Kids Act in Congress and the reintroduction of the bill in 2015 (S. 298/H.R. 546). 

On July 7, children's hospitals realized another major milestone in the legislative process for ACE Kids Act: a hearing before the health subcommittee of the House Energy and Commerce Committee. The Energy and Commerce Committee has jurisdiction over the Medicaid program, which covers two-thirds of children with medical complexity—about 2 million children nationwide.

Representing children's hospitals and the millions of families we serve, I outlined for the Committee how the ACE Kids Act would improve Medicaid for our most vulnerable children. Medicaid, a federal-state partnership, is the largest payer of pediatric health care services, and it provides excellent benefits and services for kids. However, the structure of Medicaid, which gives states great flexibility, presents challenges in caring for such a special group of children.

While the total number of children with medical complexity (CMC) is small, the health care conditions they face are serious and varied. As a result, there may only be a few hundred children across the country with a similar condition. The flexibility that Medicaid provides states, while beneficial to states, makes collecting patient data that can advance care for these children as a population nearly impossible. The ACE Kids Act calls for the creation of a national framework that states can join to work together to share data that will not only enable providers to improve care over the long term, but will also support the creation of quality measures that are appropriate for these children.

Furthermore, the ACE Kids Act calls for the creation of regional pediatric care teams to coordinate care for these children who currently experience a fragmented health care system. Care coordination will significantly lessen the burden and stress families endure as they seek care for their kids.

Thanks to outreach from children's hospitals and more than 20 supporting organizations, the bill has remarkably strong bipartisan support in Congress, with a near majority of the House of Representatives and one-third of the Senate signed on. The broad and deep support for the ACE Kids Act has galvanized the awareness and interest in these children across providers, payers and social services organizations. We are grateful for their interest and look forward to working with them to advance the bill.

As I was preparing for the hearing, I thought about the challenges we have overcome together as we've worked so hard to advance this legislation. With this bill, a national framework to improve the quality and reduce the costs of care for CMC is within our reach. We launched this effort because there were no definitions, no data and no action being taken to accelerate care for these kids on a national level. While we celebrate this milestone accomplishment, the hearing is just one step of many required to reach enactment.  

We've come a long way since 2010, and we expect to see the ACE Kids Act continue to evolve as the bill's champions in the House and Senate respond to the question we began with: How can we best improve care for CMC?

Rick Merrill is president and CEO of Cook Children's Health Care System in Fort Worth, Texas. Send questions or comments to magazine@childrenshospitals.org.