Champion of children with disabilities, dies at 72
November 9, 1949 - May 13, 2022
Julianne Ethel Beckett was an American teacher and disability rights activist. She lobbied for changes to Medicaid that allowed hundreds of thousands of disabled children to be cared for by their families at home.
I Fought for My Daughter to Live at Home, And Congress Wants to Take That Away From People With Disabilities
Julie Beckett - July 24, 2017 - "Being a mother has been one of the most gratifying roles of my life. As many parents will attest, there sometimes comes a moment in parenting where you discover strength you didn’t know you had — all because your child needs you."
For me, that moment began 39 years ago when my daughter Katie contracted viral encephalitis, an inflammation of the brain at just four months old. It compromised her tiny immune system and did irreversible damage to her body, requiring her to use a ventilator to breathe and leaving her partially paralyzed. Because of Medicaid rules at the time, we could not take Katie home to manage her care, as we wished, but instead, we were forced to keep her hospitalized for three years as we fought the system.
Unfortunately, Congress is now considering major cuts to federal Medicaid funding that would put the future of people like Katie at risk. READ MORE