ACE Kids Act: The policy win of the decade

After years of hard work, the ACE Kids Act is now law.

Following passage by the U.S. Senate and House of Representatives, the Advancing Care for Exceptional (ACE) Kids Act of 2019 as part of H.R. 1839, President Trump signed the bill into law in April. The ACE Kids Act will improve care for the sickest children in the nation. Bipartisan champions in the Senate and House, along with children’s hospitals nationwide and more than 30 supporting national health care organizations, worked together to make this law a reality.

Voluntary for states and families, the ACE Kids Act enables the creation of medical homes for children with complex medical conditions. While the first of these homes won’t get going until October 2022, CHA will be ready with resources, assistance and support for children’s hospitals. Here’s how the ACE Kids Act came together.

March 2013

Nelson Amendment to the Senate Budget Resolution highlights the need for legislation.

December 2013

Bipartisan Budget Act of 2013 includes language that highlights the needs of children with medical complexity in Medicaid.

ACE Kids national communications

• Special reports and events: The Landscape of Medical Care for Children with Medical Complexity; Optimizing Health Care for Children with Medical Complexity; Alliance for Health Policy briefing, “Improving Care for Children with Complex Medical Needs”  
• 500 million media impressions including coverage by National Public Radio, CNN, The Washington Post, USA Today, The Hill, Roll Call and hundreds of local news stations  
• More than 50,000 communications to Congress from constituents in every state

June 2014

During the 113th Congress, the bipartisan ACE Kids Act is introduced in the House (H.R. 4930). The bill’s original champions include Reps. Joe Barton, R-Texas; Kathy Castor, D-Fla.; Anna Eshoo, D-Calif.; Gene Green, D-Texas; David Reichert, R-Wash.; and Jaime Herrera Beutler, R-Wash.

December 2014

H.R. 4930 reaches 100 cosponsors.

January 2015

During the 114th Congress, the ACE Kids Act is introduced in the House (H.R. 546) and Senate (S. 298). Senate champions are Chuck Grassley, R-Iowa; Michael Bennet, D-Colo.; Rob Portman, R-Ohio; Bill Nelson, D-Fla.; Roy Blunt, R-Mo.; and Sherrod Brown, D-Ohio. House champions from 2014 all return as cosponsors.

March 2015

A Senate Amendment encourages congressional support for care coordination and other steps to improve outcomes and lower costs for children with complex medical conditions.

June 2016

More than 40 families flock to Capitol Hill for Family Advocacy Day to talk with their representatives about the ACE Kids Act; co-sponsorship increases to 210 in the House.

July 2016

The House Energy and Commerce Committee’s Subcommittee on Health holds a hearing on the ACE Kids Act. Witnesses (pictured left) include Tish West, parent from St. Joseph’s Children’s Hospital; Steven Koop, M.D., medical director at Gillette Children’s Specialty Healthcare; Rick Merrill, CEO of Cook Children’s Health System; and Jay Berry, M.D., M.P.H., pediatric researcher at Boston Children’s Hospital.

November 2016

16,735 people sign the Speak Now for Kids petition to pass the ACE Kids Act.

February 2017

During the 115th Congress, the ACE Kids Act of 2017 is reintroduced in the Senate (S. 428) and adds three more champions: Sens. Kamala Harris, D-Calif.; Cory Gardner, R-Colo.; and Patty Murray, D-Wash.

July 2017

During the 115th Congress, the ACE Kids Act of 2017 is introduced in the House (H.R. 3325).

June 2018

Nearly 50 Family Advocacy Day participants lobby Congress to pass the ACE Kids Act.

September 2018

The House Energy and Commerce Subcommittee on Health conducts a hearing on the ACE Kids Act. Witnesses include Rick Merrill, CEO of Cook Children Health System in Dallas. House Energy and Commerce Committee votes to advance the ACE Kids Act. More than 30 national organizations support the bill.

December 2018

House passes the ACE Kids Act as part of H.R. 7217. The Senate was unable to pass it before the end of the 115th Congress.

March 2019

The ACE Kids Act was incorporated into a larger Medicaid bill; H.R. 1839 passes in the House.

April 2019

• April 2: Senate passes H.R. 1839.
• April 18: President Trump signs the ACE Kids Act into law.