The ACE Kids Act is designed to help the nation’s most medically vulnerable children, those with complex medical conditions (a.k.a. medical complexity) who are on Medicaid. The bill would also improve care coordination, helping relieve the burden on the parents, guardians and other family members of these children.

  • Roughly 3 million children – 1 in 25 kids – have complex medical conditions; of that population, 2 million rely on Medicaid to access care
  • Children with medical complexity have multi-year, high-acuity conditions often requiring the services of multiple specialists, requiring time intensive coordination of care
    • Complex medical conditions can occur as a result of many of causes, including prematurity, cancer, heart defects and severe injury
    • Their specialized care often requires providers in more than one state
    • Care for children with medical complexity is unique, complex and expensive
  • Children who have complex medical conditions are roughly 6 percent of kids in Medicaid, but account for up to 40 percent of the costs
  • The overall population of children with medical complexity is growing due to important advances in medical care, such as care for premature infants
  • Coordinating care for children with medical complexity is incredibly time intensive and complex and, in the current system, usually falls to a parent or guardian
    • ACE Kids Act would give children and families a centralized point of contact for care coordination, relieving families of the burden of solely coordinating their child’s medical care
    • Data shows that care coordination decreases hospitalization and improves outcomes
    • ACE Kids Act would also streamline care across state lines
  • As a whole, the provisions in the ACE Kids Act assure that children with medical complexity in Medicaid will see the right health care providers at the right time, regardless of where a child lives or a provider works

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