The Advancing Care for Exceptional Kids Act of 2015 (ACE Kids Act) is a proposal to improve how care is delivered to America’s children with complex medical conditions on Medicaid. It was introduced in the Senate as S. 298 on January 29, 2015, by a group of bipartisan cosponsors led by Sens. Charles Grassley (R-IA) and Michael Bennet (D-CO); and introduced in the House as H.R. 546 on January 27, 2015, 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 an estimated $13 billion over its first 10 years, compared to the current system

Guess which child has a complex medical condition?

Samantha, Age 6

  • 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 5

  • 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 14

  • 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 and the link to the ACE Kids Action Alert 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. 298, the ACE Kids Act of 2015

  • Charles Grassley (R-IA)
  • Michael Bennet (D-CO)
  • Rob Portman (R-OH)
  • Bill Nelson (D-FL)
  • Roy Blunt (R-MO)
  • Sherrod Brown (D-OH)
  • Mark Steven Kirk (R-IL)
  • Patty Murray (D-WA)
  • John "Johnny" Isakson (R-GA)
  • Claire McCaskill (D-MO)
  • Tammy Baldwin (D-WI)
  • Jerry Moran (R-KS)
  • Pat Roberts (R-KS)
  • Roger Wicker (R-MS)
  • Cory Gardner (R-CO)
  • Thad Cochran (R-MS)
  • Jeanne Shaheen (D-NH)
  • Kelly Ayotte (R-NH)
  • Kirsten Gillibrand (D-NY)
  • Chuck Schumer (D-NY)
  • Edward "Ed" Markey (D-MA)
  • Ron Johnson (R-WI)
  • Elizabeth Warren (D-MA)
  • Lindsey Graham (R-SC)
  • Christopher Murphy (D-CT)
  • Tim Scott (R-SC)
  • Barbara Boxer (D-CA)
  • Richard Blumenthal (D-CT)
  • Maria Cantwell (D-WA)
  • Dianne Feinstein (D-CA)
  • Christopher Coons (D-DE)
  • Deb Fischer (R-NE)
  • Bill Cassidy (R-LA)
  • Sheldon Whitehouse (D-RI)
  • Debbie Stabenow (D-MI)
  • Angus King (I-ME)
  • Marco Rubio (R-FL)

We thank House cosponsors of H.R. 546, the ACE Kids Act of 2015

  • Joe Barton (R-TX)
  • Kathy Castor (D-FL)
  • Jaime Herrera Beutler (R-WA)
  • Gene Green (D-TX)
  • Anna G. Eshoo (D-CA)
  • David G. Reichert (R-WA)
  • Michael Honda (D-CA)
  • Steve Chabot (R-OH)
  • Lynn Jenkins (R-KS)
  • Kyrsten Sinema (D-AZ)
  • Gus Bilirakis (R-FL)
  • Steve Stivers (R-OH)
  • Dennis Ross (R-FL)
  • Lucille Roybal-Allard (D-CA)
  • Daniel Webster (R-FL)
  • Corrine Brown (D-FL)
  • Kay Granger (R-TX)
  • Alcee Hastings (D-FL)
  • Zoe Lofgren (D-CA)
  • Charles "Charlie" Rangel (D-NY)
  • Tim Ryan (D-OH)
  • Adam Schiff (D-CA)
  • Michael McCaul (R-TX)
  • Gwen Moore (D-W)
  • John Yarmouth (D-KY)
  • Donna Edwards (D-MD)
  • Brett Guthrie (R-KY)
  • Gregg Harper (R-MS)
  • Blaine Luetkemeyer (R-MO)
  • Thomas Rooney (R-FL)
  • John Garamendi (D-CA)
  • Stephen Fincher (R-TN)
  • Eric Swalwell (D-CA)
  • Tony Cardenas (D-CA)
  • Alan Lowenthal (D-CA)
  • Juan Vargas (D-CA)
  • Ann Wagner (R-MO)
  • Ann Kuster (D-NH)
  • Brad Wenstrup (R-OH)
  • Katherine Clark (D-MA)
  • David Jolly (R-FL)
  • Mike Quigley (D-IL)
  • David Schweikert (AZ)
  • Jared Huffman (D-CA)
  • Cheri Bustos (D-IL)
  • Lloyd Doggett (D-TX)
  • Julia Brownley (D-CA)
  • Mark Pocan (D-WI)
  • Jeff Fortenberry (R-NE)
  • Steve Cohen (D-TN)
  • Niki Tsongas (D-MA)
  • Jackie Speier (D-CA)
  • Leonard Lance (R-NJ)
  • Richard Nugent (R-FL)
  • Michael Burgess (R-TX)
  • Andy Harris (R-MD)
  • Jeb Hansarling (R-TX)
  • Denin Nunes (R-CA)
  • Reid Ribble (R-WI)
  • Joe Wilson (R-SC)
  • Steven Palazzo (r-MS)
  • Vicky Hsrtzler (R-MO)
  • Susan Brooks (R-IN)
  • Ander Crenshaw (R-FL)
  • Suzan DelBene (D-WA)
  • Doug LaMalfa (R-CA)
  • Sam Graves (R-MO)
  • Peter Roskam (R-IL)
  • John Conyers (D-MI)
  • Bobby Rush (D-IL)
  • Jerry McNerney
  • Derek Kilmer (D-WA)
  • Emanuel Cleaver (D-MO)
  • Adam Kinzinger (R-IL)
  • Lacy Clay (D-MO)
  • Jim McDermott (D-WA)
  • Janice "Jan" Schakowsky (D-IL)
  • Mike Coffman (R-CO)
  • David "Phil" Roe (R-TN)
  • Bob Dold (R-IL)
  • John Delaney (D-MD)
  • Denny Heck (D-WA)
  • Ruben Gallego (D-AZ)
  • Ted Lieu (D-CA)
  • Alan Grayson (D-FL)
  • Scott Peters (D-CA)
  • Mick Mulvaney (R-SC)
  • Ryan Costello (R-PA)
  • Bill Huizenga (R-MI)
  • David Young (R-IA)
  • Ann Kirkpatrick (D-AZ)
  • Ted Poe (R-TX)
  • Kevin Yoder (R-KS)
  • Daniel Lipinski (D-IL)
  • Henry "Hank" Johnson (D-GA)
  • Barbara Lee (D-CA)
  • Stephen Lynch (D-MA)
  • Adam Smith (D-WA)
  • Bennie Thompson (D-MS)
  • Bill Flores (R-TX)
  • Jared Polis (D-CO)
  • Mike Pompeo (R-KS)
  • John Lewis (D-GA)
  • Rita Lowey (D-NY)
  • Tim Huelskamp (R-KS)
  • Danny Davis (D-IL)
  • David Scott (D-GA)
  • Tammy Duckworth (D-IL)
  • Luis Gutierrez (D-IL)
  • Henry Cuellar (D-TX)
  • Robert Brady (D-PA)
  • Beto O'Rourke (D-TX)
  • Peter Welch (D-VT)
  • Robin Kelly (D-IL)
  • Seth Moulton (D-MA)
  • Brendan Boyle (D-PA)
  • French Hill (R-AR)
  • Diana DeGette (D-CO)
  • Jeff Duncan (R-SC)
  • Brian Higgins (D-NY)
  • Judy Chu (D-CA)
  • Peter "Pete" King (R-NY)
  • Joaquin Castro (D-TX)
  • Joe Courtney (D-CT)
  • James "Jim" Clyburn (D-SC)
  • Trey Gowdy (R-SC)
  • Cathy McMorris Rodgers (R-WA)
  • Joseph Kennedy (D-MA)
  • Steve Isreal (D-NY)
  • Lois Frankel (D-FL)
  • Will Hurd (R-TX)
  • Dan Newhouse (R-WA)
  • Daniel Donovan (R-NY)
  • Elizabeth Esty (D-CT)
  • Kathleen Rice (D-NY)
  • Trent Kelly (R-MS)
  • Elliot Engel (D-NY)
  • Daniel Kildee (D-MI)
  • Cedric Richmond (D-LA)
  • Brad Ashford (D-NE)
  • Dana Rohrbacher (R-CA)
  • Mike Thompson (D-CA)
  • Frederica Wilson (D-FL)
  • Richard Neal (D-MA)
  • Michael "Mike" Doyle (D-PA)
  • Pete Sessions (R-TX)
  • William Keating (D-MA)
  • Grace Napolitano (D-CA)
  • Matthew Cartwright (D-MA)
  • Michael Capuano (D-MA)
  • Karen Bass (D-CA)
  • Ed Whitfield (R-KY)
  • Michael Simpson (R-ID)
  • John Culberson (R-TX)
  • James "Jim" McGovern (D-MA)
  • Paul Gosar (R-AZ)
  • Sean Maloney (D-NY)
  • Mark Takai (D-HI)
  • Martha McSally (R-AZ)
  • Rick Larsen (D-WA)
  • Scott Tipton (R-CO)
  • Yvette Clarke (D-NY)
  • Sam Farr (D-CA)
  • Michael Fitzpatrick (R-PA)
  • Mike Bost (R-IL)
  • Renee Ellmers (R-NC)
  • James Himes (D-CT)
  • Darin LaHood (R-IL)
  • Edward "Ed" Royce (R-CA)
  • Vern Buchanan (R-FL)
  • Eleanor Norton (D-DC)
  • Patrick Meehan (R-PA)
  • Paul Cook (R-CA)
  • Ken Calvert (R-CA)
  • Trent Franks (R-AZ)
  • Earl Blumenauer (D-OR)
  • David Cicilline (R-RI)
  • Jackie Walorski (R-IN)
  • Joyce Beatty (D-OH)
  • Robert Wittman (R-VA)
  • Mark DeSaulnier (D-CA)
  • Edward "Scott" Rigell (R-VA)
  • Mark Takano (D-CA)
  • Rod Blum (R-IA)
  • Buddy Carter (R-GA)
  • Raul Ruiz (D-CA)
  • Chellie Pingree (D-ME)
  • Bill Johnson (R-OH)
  • Bruce Poliquin (R-ME)
  • Charles Dent (R-PA)
  • Kurt Schrader (D-OR)
  • Robert Latta (R-OH)
  • Frank Lobiondo (R-NJ)
  • John Mica (R-FL)
  • James Renacci (R-OH)

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