• Article
  • February 5, 2019

U.S. Senate Introduces Bill That Would Help Improve Care for Children with Medical Complexity

The 116th Congress introduced the bipartisan ACE Kids Act.

This week, the Advancing Care for Exceptional (ACE) Kids Act of 2019 (S. 317) was introduced in the United States Senate by lead co-sponsors Sens. Charles Grassley, R-Iowa, and Michael Bennet, D-Colo. This bill will improve care for the sickest children in the nation. And, with continued support from children's hospitals and other advocates, it may soon be law.

How it will help kids

The ACE Kids Act supports better care coordination for children with medically complex conditions within Medicaid. These children require serious and ongoing care—they often see six or more specialists and more than a dozen physicians. Just coordinating doctor visits can become a full-time job for parents. This bill will help reduce that burden on families by allowing states to create special health homes to coordinate children's care.

Sometimes, that care coordination even needs to extend beyond state lines. Children with very unique needs require specialized providers, and those providers aren't always in the same state as the children who rely on them. The ACE Kids Act is designed to make it easier for families to cross state lines for care, which can sometimes be a challenge today within the Medicaid program.

While long trips to see their doctor can be necessary, it's best when children see the provider they need as close to home as possible, so they can spend more time just being kids. The ACE Kids Act also supports care closest to children's homes and communities and aims to reduce unnecessary hospitalizations.

But the ACE Kids Act will do more than coordinate care; it will help make care for these children better overall in the future. Today, there is no national definition of what makes a child "medically complex," so it's hard to aggregate data and gain insight into issues they face; at a national level, it's hard to see how to help them through improvements in coordination, quality of care and more. The ACE Kids Act will fix this challenge.

What you can do

Congress has important work to do this year across a wide variety of policy areas, but it's critical that they prioritize children's health and ensure the ACE Kids Act becomes law. To help this important legislation maintain momentum, reach out to your senators and encourage them to co-sponsor the ACE Kids Act.

Send questions or comments.