ACL and CMS join our colleagues across HHS and the disability community in mourning the loss of Julie Beckett, who passed away on Friday. Together with her daughter Katie, who passed away in 2012 at the age of 34, Julie blazed new trails for the rights of people with disabilities. Nearly a decade before the Americans with Disabilities Act became law, and nearly two decades before the Supreme Court ruled in Olmstead v. L.C. that people with disabilities have right to receive care in the most integrated settings appropriate, Julie fought tirelessly – and successfully – to give Katie the opportunity to grow up at home, with her family, rather than in the hospital. She came to disability advocacy as a mom, fighting on behalf of Katie, but she remained a committed advocate for disability rights throughout her life.
In the early 1980s, Julie’s daughter Katie was three years old and needed a respirator. At the time, Medicaid did not cover at-home respirator use, which forced Katie to live in a hospital even though doctors said she could be cared for at home. As a result of Julie’s tireless and determined efforts, the “Katie Beckett Waiver” was created, and Katie went home. She grew up, went to college, and lived independently until her death.
Julie and Katie changed the course of history. The waiver has made it possible for hundreds of thousands of children to grow up in their families’ homes and live full lives. It also was an important first step toward the work we are doing today to expand access to home and community-based services so that all people can live the lives they want to live, in the community.
Julie’s advocacy didn’t stop when Katie came home. Both Julie and Katie went on to become leaders in the disability rights movement, testifying before Congress and working with the Department of Health and Human Services to improve opportunities for people with disabilities.
“Julie Beckett’s impact on disability rights cannot be overstated,” said ACL Acting Administrator Alison Barkoff. “Together with her daughter Katie, Julie showed how unfair and unjust it is to require institutional care for people who want to live in the community. They led the charge for home and community-based services and helped establish the foundation upon which the Administration for Community Living was built. Julie and Katie truly changed the world, and we are proud to continue their work to ensure true inclusion and equal opportunity for all people with disabilities.”
"With the passing of Julie Beckett, we lost a fierce advocate and trailblazer for home and community-based services and the Medicaid program,” said Daniel Tsai, Deputy Administrator and Director of Medicaid & CHIP Services for the Centers for Medicare & Medicaid Services. “Thanks to Julie's tireless advocacy, millions of Americans, including hundreds of thousands children with complex medical needs, have been able to receive the care and supports they need in their homes rather than in institutional settings. CMS staff are grateful to have had the opportunity to work with Julie and are honored to continue the work for which she fought so hard.”
Julie’s tenacity, passion for justice, and professionalism made America a better nation and will forever be part of history. We can never repay Julie and Katie for all they have done for our country, but we can honor their legacy by continuing their work to ensure that people with disabilities can live in the community, with the same opportunities as people without disabilities.