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Children With Medical Complexity

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

Understanding Medical Complexity

The ACE Kids Act of 2017 (S. 428/ H.R. 3325) was introduced in the Senate in February by lead co-sponsors Sens. Charles Grassley, R-Iowa, and Michael Bennet, D-Colo, and in the House in July by lead co-sponsors Reps. Joe Barton, R-Texas, and Kathy Castor, D-Fla.

Kids like Mackenna will be helped by the ACE Kids Act. Learn more about her story.

This legislation follows the ACE Kids Act of 2015, which achieved strong bipartisan support in both the House and Senate. Currently, the House bill has 88 co-sponsors, and the Senate bill is supported by 38 co-sponsors. 

View a cost analysis of similar 2015 legislation by an independent non-profit.

View organizations that support the ACE Kids Act.

Resources

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Toolkit
Everything You Need to Know About the ACE Kids Act
August 7, 2018

The ACE Kids Act (S. 428/H.R. 3325) will improve care for children with medical complexity in Medicaid, while reducing program spending.

Talking Points
Prioritize Kids' Health: Pass the ACE Kids Act (S. 428/H.R. 3325)
August 1, 2018

Encourage your members of Congress to support the ACE Kids Act of 2017 (S. 428/H.R. 3325).

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
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
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 ...

Analysis or Summary
ACE Kids Act of 2017 - High-level Summary (S. 428/H.R. 3325)
June 25, 2018

CHA summarizes the major similarities and differences between the Senate and House versions of the ACE Kids Act of 2017.

Toolkit
Government Relations Toolkit
June 22, 2018

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

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 ...

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.

Fact Sheet
Summary of Accelerating Kids' Access to Care Act (S. 2415)
April 27, 2018

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

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.

Analysis or Summary
ACE Kids Act 2017 Side-by-Side of Key Provisions
November 17, 2017

The ACE Kids Act 2017 Side-by-Side compares provisions in the Senate (S. 428) House (H.R. 3325) bills.

Article
Caring for Children with Medical Complexity with Help from Parents, Peer Institutions
November 8, 2017

Children's National's Complex Care Program is an established service line and medical home to more than 2,000 medically complex patients.

Analysis or Summary
ACE Kids Act of 2017 - Section-by-Section Summaries of S. 428 and H.R. 3325
November 3, 2017

CHA provides an overview of the content within each section of S. 428 and H.R. 3325.

Article
Integrating Medical and Behavioral Care Helps Children With Medical Complexity
October 4, 2017

Cook Children's found coordinated case management improved care as more than two-thirds of its medically complex patients also had a behavioral ...

Article
Proactive Care Management Promotes Quality Outcomes for Patients with Medical Complexity
October 4, 2017

Cincinnati Children's launched its care management program to focus extensive care coordination on its highest-risk patient population.

Article
Engaging Families to Improve Care for Children with Medical Complexity
October 4, 2017

A medical home program at UCLA Mattel Children's Hospital provides primary and urgent care for medically complex patients.

Article
Hub Model: A Different Approach to Caring for Children with Medical Complexity
October 4, 2017

Stanford Children's Health employs a "hub model" rather than striving solely to provide a medical home for medically complex patients.

Article
Health Care Reform Bill and CHIP: What You Need to Know
September 20, 2017

Here's the latest action in Congress on two issues that affect children's health care and what you can do to get involved.

Letter or Testimony
ACE Kids Act "Dear Colleague" Letter
July 28, 2017

House sponsors, Reps. Joe Barton (R-TX) and Kathy Castor (D-FL) circulated a “Dear Colleague” letter inviting House members to join them as ...

Article
Reducing Admissions, ED Visits and Length of Stay for Children with Medical Complexity
July 27, 2017

The CARE Award strengthens the connection between a children's hospital and the ambulatory network to better care for children with medical ...

Press Release
House Bipartisan ACE Kids Act of 2017 Introduced to Improve Care for Children in Medicaid
July 20, 2017

Children’s hospitals applaud House initiative that could improve Medicaid for 2 million kids.

Article
Strategies to Reduce Hospitalizations and Emergency Visits for Children with Medical Complexities
June 12, 2017

As part of the CARE Award, Wolfson Children's Hospital experienced improvement in a number of metrics, including reducing emergency visits.

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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.

Newsletters

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.

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