The Iowa Department of Human Services was deeply saddened to learn of Julianne “Julie” Beckett’s passing. Ms. Beckett, of Cedar Rapids, was a pioneering advocate and champion for children with serious and complex medical issues.

Julie was a wife and mother from Cedar Rapids whose daughter, Katie, contracted a brain infection when she was five months old, resulting in a lifelong need for supportive care. Katie lived in a hospital for two years until the family’s private insurance reached its maximum benefit limit. Medicaid then covered her care, but at that time, the Medicaid program only supported hospital-based care, meaning Katie’s complex care needs wouldn’t be covered if she was discharged. Julie knew she could care for her daughter at home and resolved to change the system. Julie’s tireless advocacy gained the attention of President Ronald Reagan and, in 1982, he signed what became known as the “Katie Beckett waiver,” which allows children with serious and complex medical needs, for the first time, to receive Medicaid supports at home.

Katie went home and lived a life full of friends and family. Like her mom, she also became an advocate for others. Katie passed away at the age of 34 on May 18, 2012, outliving her doctor’s initial life expectancy three times over. Julie consistently expressed her certainty that Katie’s life – both in quality and quantity – were significantly improved because she was able to be supported at home.

Katie Beckett waiver programs became the foundation for Medicaid home and community-based supports across the United States. The program has improved the quality of life for hundreds of thousands of children with complex medical needs by allowing them to be cared for in their home and not in an institution. Until her passing, Julie continued her advocacy for community integration, including supporting recent DHS initiatives to improve and expand community-based options for Iowans.

Julie dedicated her life to championing the cause of children with complex medical needs. While we mourn her passing, we also celebrate the life of an Iowan whose work touched the lives of countless children and families across the United States. Julie will be deeply missed.

Beckett, 72, passed away Friday, May 13.

For more information contact Alex Carfrae at 515-281-4848 or [email protected]  

Visit dhs.iowa.gov for information on DHS and its programs.