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. The ACE Kids Act was introduced in the U.S. Senate as S. 428 by a group of bipartisan cosponsors led by Sens. Charles Grassley (R-IA) and Michael Bennet (D-CO); and introduced in the U.S. House as H.R. 3325 by a group of bipartisan cosponsors led by Reps. Joe Barton (R-TX) and Kathy Castor (D-FL).

 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 save billions of dollars over its first 10 years, 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

Awo, Age 17

  • Awo lives with sickle cell disease, which has several times required hospitalization
  • Since age 9, she has owned her treatment, learning how to manage medicines and pain
  • She remains active and is helping pave the way for better treatment for adult sickle cell patients
  • There are almost 7,000 different “rare” diseases, together affecting almost 1 in 10 Americans
  • Many rare diseases can make a person medically complex

If you guessed “all of them” you’re right. Though some children with medical complexity have visible signs of their health challenges, most of the country’s 3 million 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 Senate cosponsors of S. 428, the ACE Kids Act

  • Charles Grassley (R-IA)
  • Michael Bennet (D-CO)
  • Rob Portman (R-OH)
  • Bill Nelson (D-FL)
  • Roy Blunt (R-MO)
  • Kamala Harris (D-CA)
  • Cory Gardner (R-CO)
  • Patty Murray (D-WA)
  • Johnny Isakson (R-GA)
  • Sherrod Brown (D-OH)
  • Tim Scott (R-SC)
  • Claire McCaskill (D-MO)
  • Jerry Moran (R-KS)
  • Heidi Heitkamp (D-ND)
  • Lindsey Graham (R-SC)
  • Maria Cantwell (D-WA)
  • Roger Wicker (R-MS)
  • Christopher Murphy (D-CT)
  • Susan Collins (R-ME)
  • Edward Markey (D-MA)
  • Deb Fischer (R-NE)
  • Sheldon Whitehouse (D-RI)
  • Pat Roberts (R-KS)
  • Tammy Duckworth (D-IL)
  • David Perdue (R-GA)
  • Richard "Dick" Durbin (D-IL)
  • Shelley Moore Capito (R-WV)
  • Richard Blumenthal (D-CT)
  • John Boozman (R-AR)
  • Elizabeth Warren (D-MA)
  • Marco Rubio (R-FL)
  • Angus King (I-ME)
  • Lisa Murkowski (R-AK)

We thank House cosponsors of H.R. 3325, the ACE Kids Act

  • Joe Barton (R-TX)
  • Kathy Castor (D-FL)
  • Jaime Herrera Beutler (R-WA)
  • Gene Green (D-TX)
  • David Reichert (R-WA)
  • Anna Eshoo (D-CA)
  • Michael McCaul (R-TX)
  • Ann Wagner (R-MO)
  • Gus Bilirakis (R-FL)
  • Paul Cook (R-CA)
  • Glenn Thompson (R-PA)
  • Bill Foster (D-IL)
  • Jason Smith (R-MO)
  • Tony Cardenas (D-CA)
  • Scott Tipton (R-CO)
  • Lucille Roybal-Allard (D-CA)
  • James Clyburn (D-SC)
  • Mike Coffman (R-CO)
  • William Lacy Clay (D-MO)
  • Zoe Lofgren (D-CA)
  • Blaine Luetkemeyer (R-MO)
  • John Garamendi (D-CA)
  • Lloyd Smucker (R-PA)
  • Kyrsten Sinema (D-AZ)
  • Eliot Engel (D-NY)
  • Ken Buck (R-CO)
  • Grace Napolitano (D-CA)
  • Earl Blumenauer (D-OR)
  • Brett Guthrie (R-KY)
  • Katherine Clark (D-MA)
  • Edward Royce (R-CA)
  • Brian Higgins (D-NY)
  • Dan Newhouse (R-WA)
  • John Lewis (D-GA)
  • Denny Heck (D-WA)
  • Erik Paulsen (R-MN)
  • Al Lawson, Jr. (D-FL)
  • Jackie Walorski (R-IN)
  • Tim Ryan (D-OH)
  • Daniel Donovan, Jr. (R-NY)
  • John Larson (D-CT)
  • Derek Kilmer (D-WA)
  • Sam Graves (R-MO)
  • Eleanor Holmes Norton (D-DC)
  • David Valadao (R-CA)
  • Sean Patrick Maloney (D-NY)
  • John Rutherford (R-FL)
  • Daniel Lipinski (D-IL)
  • Ralph Norman (R-SC)
  • Darren Soto (D-FL)
  • Pete Sessions (R-TX)
  • Eric Swalwell (D-CA)
  • Peter King (R-NY)
  • Scott Peters (D-CA)
  • John Faso (R-NY)
  • Diana DeGette (D-CO)
  • Brendan Boyle (D-PA)
  • John Faso (R-NY)
  • Stephanie Murphy (D-FL)
  • Joe Wilson (R-SC)

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