Katie Beckett Leaves Legacy For Kids With Disabilities

Katie Beckett died Friday morning in the same hospital where she'd once made history. Beckett was 3 years old when her case changed health care law. She was 34 when she died. NPR's Joseph Shapiro explains why she was important to other children with disabilities.

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Katie Beckett has died in Cedar Rapids, Iowa at the age of 34. She was just 3 years old when her case changed health care law. NPR's Joseph Shapiro has more.

JOSEPH SHAPIRO, BYLINE: Katie Beckett died Friday morning in the same hospital where she'd once made history. In 1981, Katie Beckett was living at St. Luke's Methodist Hospital in Cedar Rapids. She was stuck there because of a clash between advancing medical technology and antiquated health care law.

Katie was just 5 months old when she contracted a brain infection. She got treated at the hospital and she pretty much recovered, except that she still needed to use a ventilator to breathe for much of the day. Medicaid, the government health insurance program would pay, but only if she lived in the hospital. So Katie Beckett was stuck at St. Luke's until she was 3 years old. And then President Ronald Reagan heard about her.

PRESIDENT RONALD REAGAN: Now, by what sense do we have a regulation in government that says we'll pay $6,000 a month to keep someone in a hospital that we believe would be better off at home?

SHAPIRO: It was cheaper, just one-sixth the amount, to care for Katie Beckett in her own home. President Reagan changed the Medicaid rules, and the little girl went home.

At the time it was thought there were maybe 100 or 200 more children like her. But in the years since, more than a half-million disabled children have gotten their care at home, using what's now called the Katie Beckett Waiver. Senator Tom Harkin, the Democrat from Beckett's home state of Iowa, was a chief author of the major disability civil rights law that came later. He says Katie Beckett was important to his understanding, too.

SENATOR TOM HARKIN: And that's really what the Americans with Disabilities Act is about. It's about making sure that we don't separate people out with disabilities, but make them part of the families, making them part of the communities, part of the schools. Just an integral part of society. That's what Katie fought for all of her life.

SHAPIRO: Katie Beckett and her mother, Julie, became advocates for people with disabilities. And, Katie lived a pretty normal life. She had her own apartment, even though she still used the ventilator several hours a day. She'd once been famous, on national television. But she told NPR, in an interview two years ago, all she really craved was a regular life, to go to school, or just hang out at the local bookstore.

KATIE BECKETT: In Cedar Rapids, it's quite different, you know. I'm the girl that they see drinking a latte at Barnes & Noble. I'm not the girl from the newspaper, from the television station.

SHAPIRO: In the past couple years, there were repeated trips to the hospital. Katie had to put off classes to get her teaching certificate. She wanted to be a writer and recently she finished the tenth chapter of a novel she was writing for teens. She'd been in and out of the hospital over the last month with digestive problems.

Joseph Shapiro. NPR News.

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