In Memoriam: Katie Beckett

Katie Beckett, whose disability rights case led to kids with disabilities being allowed to live at home, dies at age 34

May 21, 2012

Katie Beckett and her mother, Julie, relax in Katie's room in 1991. Katie died Friday morning. / Des Moines Register file photo
Katie Beckett and her mother, Julie, relax in Katie's room in 1991. Katie died Friday morning. / Des Moines Register file photo

Statement from AUCD

Katie Beckett passed away on May 18, 2012. Her struggle and that of her parents led to the Katie Beckett Waiver Program that allowed literally hundreds of thousands children with disabilities and fragile medical conditions to be supported at home rather than in hospitals or nursing homes. Katie grew to be a youth leader in the world of children with special health care needs who, by her example, courage, energy, and spunk, provided a model and was a standard bearer for all those working for full participation and individualized supports for individuals with disabilities and special health care needs and their families.

Julie, Katie's mother, has been an unwavering ally and support in Katie's journey to change the health care system in this country. The thoughts and prayers of the entire AUCD network go out to Katie's parents Julie and Mark, as well as all of Katie's family and friends. Katie proved that one person can indeed change an entire system and help countless others.

George Jesien, PhD
AUCD Executive Director

Statement from HHS Secretary Kathleen Sebelius

Katie Beckett was a quiet hero and an inadvertent pioneer in the civil rights movement for people with disabilities. When she was only three years old, her family and her doctors wanted her to live at home despite her extraordinary medical support needs. At that time, Medicaid would not cover the cost of her medical services in the community -- only in the hospital. Thanks to her mother Julie's tireless advocacy, in 1982 Medicaid policy fundamentally shifted to allow people with significant healthcare needs and disabilities to receive care at home.

Over the past thirty years, the "Katie Beckett Waiver," a Medicaid program, has provided over a half million children with disabilities the chance to live at home with their families and participate in their communities instead of living in hospitals and institutions.

As a result of this change, Katie was able to grow up as a typical young woman living with a disability -- going to college, working as a writer and public speaker, and living an independent life -- and in the course of her journey, Katie inspired a whole generation of young people with disabilities and their families.

Katie will be missed by many across the country, but her determined advocacy, and that of her family, has changed countless lives for the better. Our thoughts and prayers go out to her parents, Julie and Mark, and all in the disability community who mourn her passing.

Kathleen Sebelius
Secretary, US Department of Health and Human Services

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