Thank Your Lawmakers for

Supporting the ACE Kids Act!

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 Spring 2019, the ACE Kids Act passed Congress and was signed by the president into law as part of H.R. 1839. The bipartisan legislation was championed by Charles Grassley (R-IA) and Michael Bennet (D-CO) in the U.S. Senate, as well as Kathy Castor (D-FL), Jaime Herrera Beutler (R-WA), Anna Eshoo (D-CA), and Gus Bilirakis (R-FL) in the U.S. House.

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.

Ways to be a hero

Supporting Organizations

  • American Academy of Pediatrics
  • American Association for Psychoanalysis in Clinical Social Work
  • American Association of Child & Adolescent Psychiatry 
  • American Board of Pediatrics
  • American College of Cardiology
  • American College of Surgeons
  • American Heart Association
  • American Physical Therapy Association
  • American Psychological Association 
  • American Society of Echocardiography
  • American Thoracic Society
  • America’s Essential Hospitals
  • Association of American Medical Colleges
  • Association of Medical School Pediatric Department Chairs
  • Autism Society of America
  • Autism Speaks
  • Children's Cause for Cancer Advocacy
  • Children's Hospital Association
  • ChildServe
  • Epilepsy Foundation
  • Family Voices
  • March of Dimes
  • Maxim Healthcare Services
  • Mended Little Hearts
  • MomsRising
  • National Association of Children's Behavioral Health
  • National Association of Pediatric Nurse Practitioners
  • National Board for Certified Counselors
  • National Down Syndrome Society
  • Pediatric Congenital Heart Association
  • Tricare for Kids Coalition
  • Vizient