Children With Medical Complexity

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Photo: John O'Boyle, Children's Specialized Hospital, New Brunswick, New Jersey

Children with medical complexity require ongoing and specialized care, and many of them depend on Medicaid. The ACE Kids Act would improve care coordination for these children within Medicaid and help them more easily access necessary care across state lines. This legislation had strong bipartisan support in the 115th Congress — in both the Senate and House — and the backing of more than 30 national health care organizations. While it ultimately was not passed in the Senate before the 115th Congress adjourned, the House approved the measure by a vote of 400-11.


Resources

Toolkit
Everything You Need to Know About the ACE Kids Act
January 11, 2019

The ACE Kids Act will improve care for children with medical complexity in Medicaid, while reducing program spending.

Talking Points
Pass the ACE Kids Act (H.R. 7217)
December 14, 2018

Ask your members of Congress to pass the ACE Kids Act of 2017 (H.R. 7217).

Analysis or Summary
ACE Kids Act of 2017 - High-level summary (H.R. 7217)
December 14, 2018

CHA summarizes the House-passed version of the ACE Kids Act of 2017 in the IMPROVE Act (H.R. 7217).

Article
U.S. House Passes Bill That Would Help Improve Care for Children With Medical Complexity
December 12, 2018

The bipartisan ACE Kids Act now moves to the Senate for consideration.

Press Release
Children's Hospitals Applaud U.S. House Passage of ACE Kids Act
December 11, 2018

The U.S. House passed the bipartisan Advancing Care for Exceptional Kids Act of 2017 (ACE Kids Act) as part of H.R. 7217.

Article
3 Ways Hospitals are Transforming the Delivery System for Children with Complex Medical Conditions
December 11, 2018

Children's hospitals share their findings from the CARE Award related to improving care delivery systems with better care coordination.

Article
Military-Connected Kids and Medicaid: Ensuring Military Readiness
November 21, 2018

New report shows children of active duty military members and veterans rely on Medicaid.

Press Release
New Report Highlights Why Medicaid is Critical to America's Military Readiness
November 15, 2018

A coalition of military family and health advocacy groups released a new report highlighting the crucial role Medicaid plays for millions of military children.

Article
What This Mom Learned About Sepsis After Her Son Survived It
October 23, 2018

Nikki Schueller learned a lot about sepsis after her son’s six battles with it. Here’s what she wants all health care providers to know.

Article
How Hospitals Create Partnerships with the Families of Children with Complex Medical Conditions
October 23, 2018

How children's hospitals are improving care for children with medical complexity and reducing health care spending.

Article
Stabilizing the Cost of Care for Children with Medical Complexity
October 19, 2018

Children's hospitals share insights on how focusing at the local level helped build relationships with payers.

Toolkit
Government Relations Toolkit
October 9, 2018

CHA members can view and print the latest materials for outreach to federal and state lawmakers.

Letter or Testimony
Accelerating Kids Access to Care Act CHA Support Letter
September 19, 2018

CHA sent a letter of support for the Accelerating Kids' Access to Care Act (S. 2415/H.R. 6524), which will create a national Medicaid enrollment pathway to help alleviate the administrative burden on providers and ensure that children are able to receive out-of-state care.

Press Release
Children's Hospitals Applaud House Energy and Commerce Advancement of ACE Kids Act
September 13, 2018

The U.S. House Energy and Commerce Committee voted to advance the bipartisan Advancing Care for Exceptional Kids Act of 2017 (ACE Kids Act, H.R. 3325), co-sponsored by Reps. Barton, R-Texas, and Castor, D-Fla., to the House floor for consideration.

Press Release
Children's Hospitals Applaud House Subcommittee Advancement of ACE Kids Act
September 7, 2018

The U.S. House Energy and Commerce Health Subcommittee voted to advance the bipartisan Advancing Care for Exceptional Kids Act of 2017 (ACE Kids Act, H.R. 3325).

Press Release
Lawmakers Focus on Helping Children with Bipartisan ACE Kids Act
September 5, 2018

The House Energy and Commerce Subcommittee on Health held a hearing today to discuss the bipartisan ACE Kids Act (H.R. 3325).

Article
Looking Through 'Fresh Eyes' Could Be the Best Way to Solve Complex Medical Cases
July 30, 2018

Newman: Solving a seemingly intractable case requires questioning the original diagnosis and all subsequent diagnoses.

Article
Commentary: Kids are at the Center of Everything Children's Hospitals Do
July 30, 2018

Advocating for children is part of our roles as leaders in children's hospitals, says Rick W. Merrill, CEO of Cook Children's Health Care System.

Article
Pediatric Long-term Care Program Prepares Patients and Families for Home
July 19, 2018

Children's hospital facility addresses specialized needs of infants and children who require extended medical care and rehabilitation.

Report
Implications of adult network adequacy standards on children’s access to pediatric specialty care
July 16, 2018

CHA is examining the distribution of pediatric health care services, care delivery, and pediatric care utilization to help inform policy decisions related to network adequacy standards that would require the inclusion of specialized pediatric providers in provider networks.

Press Release
Children's Hospitals' Patient Families to Congress: Prioritize Children's Health and Pass Bipartisan Solutions for Kids
June 19, 2018

Child patients and their families will join children's hospitals from across the country in Washington, D.C., for Speak Now for Kids Family Advocacy Day, to speak to the importance of prioritizing children's health

Talking Points
Prioritize Kids' Health: Safeguard Medicaid
June 15, 2018

Congress must safeguard Medicaid for the children who depend on it to lead healthy, productive lives.

Article
A Child's Special Talent Overshadows a Complex Medical Condition
April 27, 2018

Bridget Benson has adjusted to life with CHARGE syndrome, a genetic condition that occurs in about one in every 10,000 births.

Article
Our First Priority is Providing the Best Care to Kids
April 24, 2018

We should raise our voices together to help confront the issues facing kids.

Talking Points
Summary of Accelerating Kids' Access to Care Act (S. 2415)
April 20, 2018

Summary of the Accelerating Kids' Access to Care Act (S. 2415) legislation, sponsored by Sen. Chuck Grassley, R- Iowa, and Sen. Michael Bennet, D-Colo.

Contacts

CARE Award

CARE Award Delivery System Transformation

An ambitious, national project is underway to test new payment and delivery models for children with medical complexity. 

Toolkit

The Capitol building.

Government Relations Toolkit
CHA members can view and print the latest materials for outreach to federal and state lawmakers.

Presentations

Annual Leadership Conference

Leaders share the latest insights from the CARE award study to improve outcomes and reduce costs for children with medical complexity.

Policy Update Calls

Members receive the latest updates and suggest ways to best influence policy issues that impact children's health and children's hospitals in a weekly conference call.