Children's Hospitals Today - Summer 2016 - 27

POLICY UPDATE Milestones in advancing children's health care The ACE Kids Act moves forward in the legislative process with a hearing on Capitol Hill. By Rick Merrill A Committee on Energy and Commerce s 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 Rick Merrill, seated far right, participated in the July 7 House Energy and Commerce Committee Committee has jurisdiction over the hearing for the ACE Kids Act in Washington, D.C. Medicaid program, which covers two-thirds of children with medical complexity-about 20 supporting organizations, the bill has remarkably strong 2 million children nationwide. bipartisan support in Congress, with a near majority of the House Representing children's hospitals and the millions of families of Representatives and one-third of the Senate signed on. The we serve, I outlined for the Committee how the ACE Kids Act broad and deep support for the ACE Kids Act has galvanized the would improve Medicaid for our most vulnerable children. awareness and interest in these children across providers, payers Medicaid, a federal-state partnership, is the largest payer of and social services organizations. We are grateful for their interest pediatric health care services, and it provides excellent benefits and look forward to working with them to advance the bill. and services for kids. However, the structure of Medicaid, which As I was preparing for the hearing, I thought about the gives states great flexibility, presents challenges in caring for challenges we have overcome together as we've worked so hard to such a special group of children. advance this legislation. With this bill, a national framework to While the total number of children with medical complexity improve the quality and reduce the costs of care for children with is small, the health care conditions they face are serious and medical complexity is within our reach. We launched this effort varied. As a result, there may only be a few hundred children because there were no definitions, no data and no action being across the country with a similar condition. The flexibility that taken to accelerate care for these kids on a national level. While Medicaid provides states, while beneficial to states, makes we celebrate this milestone accomplishment, the hearing is just collecting patient data that can advance care for these children one step of many required to reach enactment. as a population nearly impossible. The ACE Kids Act calls for We've come a long way since 2010, and we expect to see the the creation of a national framework that states can join to ACE Kids Act continue to evolve as the bill's champions in the work together to share data that will not only enable providers House and Senate respond to the question we began with: How to improve care over the long term, but will also support the can we best improve care for children with medical complexity? creation of quality measures that are appropriate for these children. Furthermore, the ACE Kids Act calls for the creation Rick Merrill is president and CEO of Cook Children's Health Care of regional pediatric care teams to coordinate care for these System in Fort Worth, Texas. 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. Send questions or comments to Thanks to outreach from children's hospitals and more than magazine@childrenshospitals.org. CHILDREN'S HOSPITAL S TODAY Summer 2016 27

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