By Robert B. Fleming, CELA

Katie Beckett, who died recently at the age of 34, directly changed the lives of more than half a million children with disabilities. She inspired millions of children, their parents and the entire disability community.

Due to encephalitis, she spent her earliest years in a hospital. In 1981, though doctors agreed that she could live at home with appropriate supports, Medicaid would only pay for institutionalized care. That institutional care cost about six times more than supportive home care. She had reached the million-dollar cap on her parents’ personal health insurance, and the only funding source was Medicaid.

Her mom’s entreaties reached President Reagan, who famously agreed that the Medicaid regulation made no sense, waiving the rule that stood between her and a home life. The following year, Congress passed the Katie Beckett Waiver, permitting states to provide Medicaid funds for the home-based care of children and adults with severe disabilities, based on their own income alone.

“Advocacy is in my blood and in my soul,” Katie once said, and from the age of 10, she devoted herself to broadening opportunities for people with special needs. Through Kids as Self-Advocates, a program which her mother helped to establish, she encouraged young people to participate in their own health care decisions.

Katie Beckett believed fervently that people with disabilities should be encouraged to exceed society’s low expectations of them, and she was an inspiring role model. She received a B.A. in English and creative writing from Mt. Mercy College in Cedar Rapids, Iowa, and she lived in her own apartment. She wanted a career through which she could help others; one of her first jobs was as a YWCA first responder to victims of sexual assault and domestic violence. A recognized influence in Washington, D.C., she served on advisory panels for Social Security’s Ticket to Work and Work Incentives Program.

Katie Beckett’s courage and generosity turned personal adversity into a force for social change. She – and her impact in the disability community – will be missed. She will also be remembered for her inspirational drive and courage.

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