• Article
  • July 8, 2016

ACE Kids Act Has its Day Before the House Energy and Commerce Committee

The ACE Kids Act reaches a critical milestone on a path towards passage and enactment. 

It was standing room only at the House Energy & Commerce Subcommittee on Health hearing on the Advancing Care for Exceptional Kids Act (ACE Kids Act, H.R. 546). The July 7 hearing on Capitol Hill drew children’s hospital executives, parents of children with medical complexity, health care industry experts and policy leaders for a review of a revised discussion draft of the bill that reflected input the committee and bill’s cosponsors received from stakeholders. 

The revised bill maintains the goal of improving care coordination and quality of care for children with medical complexity through the collection and dissemination of data and standards while aiming to reduce Medicaid and health care spending and relieve burdens on families. 

Several representatives from the children’s hospital community participated, including: 

  • Rick Merrill, president and CEO, Cook Children’s Health System
  • Jay Berry, M.D., M.P.H., pediatrician specializing in complex care services at Boston Children’s Hospital, and assistant professor of pediatrics, Harvard Medical School
  • Steven Koop, M.D., medical director, Gillette Children’s Specialty Healthcare
  • Tish West, parent of a patient at St. Joseph’s Children’s Hospital’s Chronic-Complex Clinic 

Others testifying during the hearing included Maria Isabel Frangenberg, project coordinator with Family Voices; and Matt Salo, executive director, National Association of Medicaid Directors. Children’s hospitals were well-represented in the audience, with staff members from more than 15 children’s hospitals from across the nation in attendance.  

Two-thirds of the Committee on Energy and Commerce Subcommittee on Health attended the hearing, including original cosponsors of ACE Kids Act, H.R. 546: Reps. Joe Barton, R-Texas; Kathy Castor, D-Fla.; committee chairman Rep. Joseph Pitts, R-Pa.; and ranking member (and fellow original cosponsor) Rep. Gene Green, D-Texas; as well as the Chairman and Ranking Member of the full Energy and Commerce Committee, Reps. Fred Upton, R-Mich., and Frank Pallone, D-N.J.

The ACE Kids Act has 214 bipartisan cosponsors in the House, and 38 in the Senate. During the hearing, Barton said the goal is to continue to refine the legislation and move it through the Subcommittee and full House Energy and Commerce Committee this fall and ultimately enact the bill before the end of the year.

A parent's perspective

Tish West

Tish West was a banking executive when her daughter, Caroline, was born 19 years ago. The family’s search for a diagnosis for Caroline’s condition took them to several children’s hospitals across state lines until it was determined that she has a rare neurological condition known as Alternating Hemiplegia of Childhood marked by seizures, developmental delays, episodes of paralysis and involuntary muscle movement. West, like many parents with children like Caroline, resigned from her job to focus on her care and well-being.

Today, Caroline relies on 29 health care specialists, anti-seizure medication and attends a special school. For the last 10 years, Caroline has received coordinated at the Chronic-Complex Clinic at St. Joseph’s Children’s Hospital. The clinic serves as Caroline’s medical home and staff members coordinate all facets of her care. “One critical component of the ACE Kids Act is that it will hopefully establish more medical homes or health homes for this population of children,” West said during her testimony. “A medical home for complex kids is a rarity.”

Defining medical complexity

Jay BerryJay Berry, M.D., M.P.H., a leading researcher in the area of children with medical complexity, defined what it means to have a medical complexity for the committee. “These children have lifelong, often incurable, severe chronic diseases that causes multiple organ systems of the body to function improperly,” he said. “They often have significant impairment in the ability to perform basic bodily functions.”

In outlining the needs for caring for this population, Berry said the main goal is to give them the best life possible despite the fact that their health will always be limited because of their chronic health problems. According to Berry, care coordination can help. “Very rarely is one provider or one clinic able to achieve this alone,” he said. “The goal is more often achieved by all providers working as a team.”

Leadership perspective

Rick Merrill

Rick Merrill, president and CEO of Cook Children’s Health System, offered testimony on behalf of his hospital and all children’s hospitals nationwide. Like many freestanding children’s hospitals, Cook Children’s has patients from Texas and other states. The hospital has nearly 100,000 children on Medicaid enrolled in its managed care plan. Merrill spoke to the challenges for patients on Medicaid who cross state lines for care, the rising cost of Medicaid, and the need for national quality standards for children.

“Each year, the number of children with multiple life-threatening disabilities grows,” Merrill said. “Over the coming decade, the 2 million children with medical complexity in Medicaid will greatly increase in numbers at the current growth rate of 5 percent or more, and the $30 billion to $40 billion dollars we incur yearly in Medicaid costs for this population will increase even more rapidly given medical inflation rates.”

While Medicaid is state-based, the children the hospital serves are not all local—many patients travel great distances for the hospital’s care. “We have no national data to accelerate best practice and quality improvement work, and no national quality standards to assess if we're doing a better job,” Merrill said. “These essential elements of improvement in service and care cannot be achieved without changes to Medicaid.”

Continued learning

Steven Koop, MD

Steven Koop, M.D., medical director at Gillette Children’s Specialty Healthcare, said the proposed data-driven revisions to the ACE Kids Act would focus on gathering information and statistics, learning more about the population of children with disabilities Medicaid serves, and highlighting best practices. 

“This new approach makes improving Medicaid for families struggling to access care for their children who have complex medical conditions a priority, but helps to ensure we obtain data first to work towards a shared goal, not to disrupt patient care while improving Medicaid,” he said.


House Energy & Commerce Committee Hearing
Back row: Energy & Commerce Committee Chairman Rep. Fred Upton (R-Mich.), Rep. Joe Barton (R-Texas), Rep. Brett Guthrie (R-Ky.), Staff of Rep. Joe Pitts, Health Subcommittee Chairman Rep. Joe Pitts (R-Pa.), Health Subcommittee Ranking Member Rep. Gene Green (D-Texas), Staff of Rep. Gene Green
Front row: Rep. Kathy Castor (D-Fla.), Rep. Doris O. Matsui (D-Calif.)

Hearing recording


Start at 32:33 mark for opening statements.