Q&A: New Law Helps Kids with Complex Medical Needs

02.06.2026

Q: What prompted your decades-long advocacy for kids with complex medical needs?

A: Parents work their tails off to provide for their kids, from putting food on the table to putting money away for their education. Most days, moms and dads are burning the candle at both ends to make it through the homework grind and shuttle their kids to daycare or after-school activities. Now imagine the stress tens of thousands of parents shoulder to navigate medical appointments for kids with complex medical needs. For decades, I've worked to help remove barriers to care for parents of children with disabilities. During my first term in the U.S. Senate, I was inspired by a young Iowan named Katie Beckett. At 5 months old, Katie contracted viral encephalitis resulting in damage to her central nervous system. She lived for 3 ½ years in the hospital, in part because Medicaid rules wouldn't pay for her care at home. I worked with former Rep. Tom Tauke and Sen. Tom Harkin to secure Medicaid reforms during the Reagan administration that would allow patients like Katie to receive care at home in their communities, rather than in an institution. Since then, the "Katie Beckett waiver" has allowed hundreds of thousands of young Americans to receive home and community-based care and save taxpayer dollars.

In the years to follow, I continued my efforts on behalf of families caring for kids with special needs. I pushed bipartisan legislation with former Sen. Edward Kennedy to empower parents to work without fear of losing Medicaid coverage for their kids with multiple medical needs. After many years, strong grassroots advocacy helped get our bill across the finish line. President George W. Bush signed The Family Opportunity Act into law on Feb. 8, 2006. My bill was inspired by a mom from Red Oak, Iowa who moved to the East Coast to obtain special medical care for her son. She passed up pay raises so her son wouldn't lose Medicaid coverage for treatment and services needed for his medical care. Too many vulnerable families were falling through the cracks, turning down better-paying jobs or even giving up custody of their own children to keep Medicaid coverage for rehabilitation services and medical treatments for their kids. On a sliding payment scale, my bipartisan law allows states to extend Medicaid "buy in" coverage for families with children with disabilities and created Family-to-Family Health Information Centers in each state to help parents navigate and arrange health services for their children with special needs. The law is pro-work, pro-family and pro-taxpayer.

Q: What is the Accelerating Kids' Access to Care Act?

A: During President Trump's first term, I secured another bipartisan victory for families struggling to coordinate care for kids with complex medical needs, such as cancer, congenital heart disease, epilepsy, cystic fibrosis, cerebral palsy or other chronic health conditions. Co-sponsored by Sen. Michael Bennet of Colorado, the Advancing Care for Exceptional Kids Act, often called the ACE Kids Act, is designed to help improve health outcomes, reduce unnecessary hospitalizations and ease coordination for families. Consider that children with complex medical needs require on average five or six specialists; some see dozens of allied health care professionals for their care. Our legislation empowers families and their child's team of health care professionals to streamline a continuum of care on a patient-by-patient basis. The law establishes a pediatric health home for kids with complex medical conditions and reforms Medicaid payment rules to encourage better coordination of care. The Centers for Medicare & Medicaid Services fully implemented the Ace Kids Act in 2022.

Iowans know that once legislation is signed into law, I keep a close eye on its implementation to ensure it's working as intended. While the ACE Kids Act made good progress, more work was needed. So, I partnered once again with Sen. Bennet to introduce the Accelerating Kids' Access to Care Act. I call it ACE Kids 2.0. Thanks again to tireless grassroots advocates and strong bipartisan cosponsorship from nearly half the Senate, our bill crossed the finish line in February and President Trump signed it into law. I hope this will give parents more peace of mind knowing these updates will remove regulatory burdens for lifesaving care. Too often, children with complex medical needs are blocked or delayed from receiving specialized care from out-of-state pediatric care providers. This legislative victory will allow states to streamline screening and enrollment processes while maintaining strong program integrity measures, so that children get timely access to care. I'm proud to champion the dignity of children with special needs and ease some of the burdens on parents who want to see their beloved kids survive and thrive.