The Katie Beckett Story - How a Young Girl Changed Medicaid Forever
By: Connor W. Kavanaugh CTFA, ChSNC
Date: July 27th, 2020
The story of Katie Beckett and her family is not one that is widely known, especially outside of the disability community. It is a story that when told properly, has the merits to be a successful Hollywood film because of the intersection of love, family, challenge. The unwavering perseverance of a young child with her family by her side changed the lives of millions of families in the disability community for generations to come.
It was 1978 and Katie Beckett was a joyful five-month-old living with her family in Iowa when she contracted a devastating brain infection called viral encephalitis. As a result of the diagnosis, she suffered paralysis that left her hospitalized needing 24-hour care. Katie was supported by a middle-class family and a health insurance policy with $1 million maximum coverage. But with the amount of care that Katie needed, it was quickly exhausted, and the Beckett family was forced to explore other options. Luckily, Katie qualified for Medicaid and paid nearly all expenses for Katie’s hospitalization for nearly three years. Thankfully, Katie’s condition improved enough to live with her family in their Iowa home but unfortunately, Medicaid notified the Beckett family that Katie’s Medicaid coverage would not continue. Katie would still need extensive support from nurses and equipment to live at home, but Medicaid would only pay for Katie’s care if she remained in a hospital or nursing home.
Katie’s family faced a difficult dilemma—Let Medicaid continue to provide full coverage but force Katie to live in an institution for the rest of her life or she could live at home with her loving family by her side but without the nursing care her medically fragile condition required. Since 1965, when Medicaid was signed into law, Medicaid’s strict eligibility requirements and coverage limitations would simply not pay for her care unless it was an institutional setting. Regardless of your situation, one of the most important aspects of life is to live in an environment that provides love, support, and comfortability--Typical descriptors not often used to describe institutions. After consistently and passionately lobbying for change, in 1981, President Ronald Reagan heard about Katie Beckett’s situation and stepped in.
President Reagan signed into law the Katie Beckett Waiver in 1981 which allowed Katie, and other individuals with disabilities like her, to receive their care at home while retaining their Medicaid coverage. What seemed like a small win in 1981 paved the way for the future. Some of the most important waiver programs for individuals with disabilities—Oregon K-Plan & Washington’s IFS Waiver-- use this important ruling as a foundation to how individuals are currently supported via their Medicaid eligibility.
Katie once said, “Advocacy is in my blood and in my soul” and at the age of 10, she committed her life to expanding the opportunities for individuals with disabilities. Katie grew into an accomplished motivational speaker and was a champion for people with disabilities. Katie directly changed the lives of millions by not only her passionate advocacy work but also the inspiration to not let a diagnosis define oneself. Katie received a college degree from Mt. Mercy College in Cedar Rapids, Iowa and lived independently in her own apartment through her 20’s and 30’s.
Katie unfortunately passed away in 2012 at the age of 34 but her contribution to the disability community will live on forever.
President Ronald Reagan meets Katie Beckett, along with her parents, Julia and Mark Beckett as the President exits Air Force One on the tarmac of Cedar Rapids Municipal Airport, Iowa, September 20th, 1984. Photograph by official White House photographer Michael Evans, courtesy of the Ronald Reagan Presidential Library.