Bennet, Grassley Bill to Improve Care for Kids with Complex Medical Conditions Passes Congress

Washington, D.C. – This week, bipartisan legislation to improve health outcomes and care coordination for children with complex medical conditions in Medicaid, led by U.S. Senate Finance Committee members Michael Bennet (D-CO) and Chuck Grassley (R-IA), unanimously passed the Senate after passing the House of Representatives last week.

“This legislation will help ease the burdens placed on families of kids with complex medical needs. In finally prioritizing this issue, Congress is ensuring that families will receive the help they need to coordinate multiple appointments and providers for their children,” Bennet said. “The ACE Kids Act will help make it possible for Children’s Hospital Colorado – and hospitals like it across the country – to coordinate care and ensure children with complex medical conditions receive the treatments they need.” 

“Since the start of Medicaid, more children are surviving life threatening conditions, including prematurity, childhood cancer, and complications associated with Down syndrome,” Grassley said. “We can all be grateful for that fact. However, as a result, some of these children have ongoing complex medical needs. On average, these children see 5-6 specialists and up to as many as 20-30 allied health professionals. Parents are often overwhelmed at the responsibility of coordinated that care. The Advancing Care for Exceptional (ACE) Kids Act will reduce the burden on families and caregivers by improving the coordination of medical care for these children. In addition, better coordination of care will reduce emergency room visits and hospitalizations and thereby reduce health care expenditures. Better coordination of care and healthier children is a great prescription.”

The outdated fee-for-service health care system has resulted in fragmentation of care for children with medically complex conditions. The Advancing Care for Exceptional (ACE) Kids Act creates an option for states and families to provide improved coordination of care with the promise of better health outcomes. More information is available HERE.

This legislation is supported by the following groups:

American Academy of Pediatrics

American Association for Psychoanalysis in Clinical Social Work

American Association of Child and Adolescent Psychiatry

The 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


Epilepsy Foundation

Family Voices

March of Dimes

Maxim Healthcare Services

Mended Little Hearts

Moms Rising

National Association for 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