Supporting Organizations

  • Adult Congenital Heart Association
  • American Academy of Pediatrics
  • American Association of Child & Adolescent Psychiatry 
  • American Board of Pediatrics
  • American College of Cardiology
  • American College of Surgeons
  • American Heart Association
  • American Psychological Association 
  • America’s Essential Hospitals
  • Amicus Therapeutics
  • Association of American Medical Colleges
  • Association of Medical School Pediatric Department Chairs
  • Autism Society
  • Autism Speaks
  • Children's Cause for Cancer Advocacy
  • Children's Hospital Association
  • ChildServe
  • Epilepsy Foundation
  • Family Voices
  • Foundation to Eradicate Duchenne
  • International Pediatric Rehabilitation Collaborative
  • March of Dimes
  • Mended Little Hearts
  • MomsRising
  • National Association of Children's Behavioral Health
  • National Association of Pediatric Nurse Practitioners
  • National Down Syndrome Society
  • Pediatric Congenital Heart Association
  • Tricare for Kids Coalition
  • Vizient

What is the ACE Kids Act?

The Advancing Care for Exceptional Kids Act (ACE Kids Act) is a congressional proposal to improve how care is delivered to America’s children with complex medical conditions on Medicaid.

In December 2018, the U.S. House approved the ACE Kids Act by a 400-11 vote thanks to a group of bipartisan champions led by Reps. Joe Barton, R-Texas and Kathy Castor, D-Fla. Originally introduced as H.R. 3325 with more than 130 cosponsors in the 115th Congress, the ACE Kids Act was approved with other health care measures in the IMPROVE Act, H.R. 7217. It was not passed by the U.S. Senate before the 115th Congress adjourned.

In February 2019, the ACE Kids Act was re-introduced in the U.S. Senate as S. 317 by bipartisan co-sponsors Sens. Charles Grassley, R-Iowa, and Michael Bennet, D-Colo.

 Once enacted into law, the ACE Kids Act will:

  • Improve coordination of care for children to reduce the burden on families
  • Address problems with fragmented care across state lines
  • Gather national data on complex conditions to help researchers improve treatments for rare diseases
  • Potentially reduce health care spending, compared to the current system 

Guess which child has a complex medical condition?

Samantha, Age 9

  • Samantha was born three months premature, weighing just 2 pounds, 2 ounces
  • Required a ventilator for six weeks and underwent two surgeries
  • At 4 months old, weighing over 7 pounds, Samantha was able to go home
  • She had three years of follow up visits, but never needed another hospital stay
  • Premature birth is a common cause of medical complexity

Jaden, Age 8

  • Jaden was born with hypoplastic left heart syndrome
  • He’s required three open-heart surgeries to help repair the left side of his heart
  • He’s undergone months of physical rehabilitation, but you could never tell by looking at him
  • He’s an enthusiastic student and active in swimming, soccer and Tae Kwon Do
  • Many birth defects are complex medical conditions, including most heart conditions

If you guessed “both” you’re right. Though some children with medical complexity have visible signs of their health challenges, most of the country’s children with medical complexity are indistinguishable from their peers.

Without getting to know them, you’d never guess that each of these children had to learn early what it means to be a hero: persevering to overcome huge obstacles, often becoming an inspiration for others along the way.

Learn about the ACE Kids Act

Ways to be a hero

  • Use #ACEKidsAct in your tweets and social media messages, so you encourage more people to learn about children with complex medical conditions, the legislation, and how to become involved.
  • Join the Speak Now for Kids community and submit your own personal story – via text, pictures and/or video.

We thank bipartisan Senate cosponsors of the current version, S. 317

  • Charles Grassley (R-IA)
  • Michael Bennet (D-CO)

We thank bipartisan cosponsors of the Dec. 2018 House version, H.R. 7217

  • Joe Barton (R-TX)
  • Kathy Castor (D-FL)
  • Jaime Herrera Beutler (R-WA)
  • Anna Eshoo (D-CA)
  • Fred Upton (R-MI)
  • Gus Bilirakis (R-FL)
  • Debbie Dingell (D-MI)
  • Brett Guthrie (R-KY)
  • Gene Green (D-TX)

Five of the ACE Kids Act’s original House cosponsors explain why they believe this legislation is important.