A few years ago, I asked a 13-year-old girl who was receiving care for cystic fibrosis on a Medicaid program known as the "Katie Beckett waiver" if she knew who Katie Beckett was. "Probably some kind of doctor," the girl said.
It was a logical guess. But Beckett was another child with a significant disability, and she changed health care policy for hundreds of thousands of other children with complex medical needs. On Friday, Beckett, at age 34, died in Cedar Rapids, Iowa, of complications from her disability.