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 In Memoriam

In Memory of Katie Beckett 

AMCHP would like to extend our deepest condolences to the Beckett family, on the passing of their daughter Katie. The advocacy efforts by Katie and her family will forever impact the lives of children and youth with special health care needs. For 30 years, the Katie Beckett waiver has helped children with disabilities live at home, thanks to in-home, Medicaid-funded services, and be a part of their community much like typical children their age.

“Katie was an inspiration to all of us.  Her efforts, and those of her family, on behalf of all children and youth with special health care needs will be appreciated and remembered always,” said AMCHP CEO Michael Fraser who traveled to Cedar Rapids, Iowa, for the memorial service on Friday, May 25. “The thoughts and prayers of our board, our members, and our staff are with the Becketts at this difficult time.” 

Katie was able to grow up as a typical young woman living with a disability.  She went to college and worked as a writer and public speaker. But she was able to live this life independently thanks to the changes her family pushed for. Throughout the course of her life, Katie educated and inspired the next generation of young people with disabilities and their families.

“Katie Beckett’s life inspired a major change in how Medicaid services could be delivered to children and youth with special health care needs.  My son Charlie was able to grow up at home in our community because of this change.  While I never met Katie, I feel like I knew her because her name was part of our household vocabulary, used to refer to the Medicaid waiver that Charlie was on throughout his childhood,” said Amy Whitehead, Wisconsin Department of Health Services Statewide CYSHCN Coordinator and AMCHP Family and Youth Leadership Committee chair. “The Katie Beckett program always invoked the story behind the name – a story that still inspires awe. The story that makes us, as parents, believe that we can change systems; the power of a mother’s love in action.  I am forever humbled and grateful for the incredible gift that Katie and her mother gave to the rest of us.”

“Katie Beckett was as an inspirational young woman. Through her tireless advocacy efforts and multiple life achievements, she was a symbol of the strength and resiliency of children with special health care needs,” said Debra Waldron, Director and Chief Medical Officer, Iowa Child Health Specialty Clinics. “Together with her mother Julie, the importance of family voice and choice became recognized. Our fellow Iowans are proud of Katie and were honored to know her. Katie truly touched our lives, as well as the lives of the millions of children living with disabilities and special health care needs. The IA-CYSHCN program is saddened by her passing.”

Those who worked with Katie will miss her determination and her infectious laugh, but thanks to all she has done, the next generation of leaders is poised to step up and continue working for all those with disabilities.