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Supporters call for passage of bill coordinating care for kids with complex medical conditions

An Omaha mother is among those in Washington, D.C., this week, advocating for changes to medical care for kids with complex conditions.

Wendy Larson’s daughter has an enlarged heart, and underwent a transplant about two years ago. Larson will meet with lawmakers Tuesday, urging support for the ACE Kids Act. It would set up coordinated care networks among childrens’ hospitals, in hopes of streamlining care for children on Medicaid who have conditions such as cancer, cystic fibrosis, and heart defects.

Larson says the ACE Act will help families be able to focus on their sick children.

"This is going to streamline expensive care. And a lot of it, I think, is it’s going to just take a lot of the burden off of families, working families like us who need extra support and not a lot of the stress that’s involved with it."

Larson says her daughter required medical care when the family traveled out-of-state last year, and her insurance wasn’t accepted. One goal of the ACE Kids Act is to streamline care when children have multiple providers or travel out-of-state for treatment.

Senator Chuck Grassley of Iowa introduced the ACE Kids Act in the Senate. Congressmen Jeff Fortenberry of Nebraska and David Young of Iowa are co-sponsors on the House version of the Act. Both bills have bipartisan support.