Julie Beckett, mother who advocated for children with disabilities, dies at 72

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Julie Beckett, who as a determined mother of a disabled child fought federal bureaucracy to cover her daughter’s home medical expenses, a victory that has helped hundreds of thousands of children grow up with their families rather than in hospitals and institutions, died May 13 at his home in Cedar Rapids, Iowa. She was 72 years old.

The cause was a heart attack, said his brother John O’Connell.

“Sometimes there comes a time in parenting,” Ms Beckett observed, where “you discover a strength you didn’t know you had — all because your child needs you.”

That time has come for Ms Beckett, she observed in an essay published by the American Civil Liberties Union, just four months into her life as a mother, when her baby daughter, Katie, contracted encephalitis viral. The disease, a life-threatening brain inflammation, left Katie in a coma for days. When she woke up, she was partially paralyzed and needed a ventilator to breathe. Doctors predicted that she would not live beyond 10 years.

But Katie’s condition eventually improved, enough for Ms Beckett to be confident she was safe to take home to grow up with proper medical attention. At the age of 3 and a half, Katie hardly knew any home other than her hospital room.

Ms Beckett, however, discovered that her daughter was living in a bureaucratic no-man’s land: under the terms of her Medicaid and Supplemental Security Income benefits, Katie’s medical costs would only be covered if she remained in hospital. Ms Beckett, a junior high school teacher, and Katie’s father, who worked in a lumber yard, could not afford to pay for Katie’s care out of pocket if she came home.

“We’re not poor enough to qualify, but we’re not rich enough to handle it,” Ms. Beckett told The Associated Press in 1981. “Nobody would be rich enough to handle all that she needs .”

The irony was that, obviously, it cost a lot more to look after Katie in the hospital than to meet her needs at home. Ms Beckett took her case to Iowa Congressman Thomas J. Tauke (R). He brought it to the attention of Vice President George HW Bush, who in turn reported it to President Ronald Reagan. Reagan, ever the champion of small government, pointed to Katie’s story as an example of “hidden” federal bureaucracy.

“In what sense,” Reagan remarked at a press conference in November 1981, “do we have a settlement in the government that says we’ll pay $6,000 a month to keep somebody in a hospital who, according to us, would be better at home, but the family can’t pay a sixth of that amount to keep them at home?”

Before long, Richard S. Schweiker, Reagan’s health and human services secretary, issued a waiver – later dubbed the Katie Beckett waiver – that allowed Katie to be discharged from the hospital and continue to receive medical treatment. government benefits. She was home in time for Christmas and received a Reagan doll with a wish for “the greatest holiday ever”.

“It’s wonderful because we’re a real family now,” her mother later told United Press International.

“Going to the hospital three or four times a day and never being able to be a family was very difficult for us,” Ms Beckett remarked in another interview. “You couldn’t be a family, you just couldn’t. The door was still open, someone was still looking inside. If you wanted to tickle Katie or do whatever parents do with their kids, you just couldn’t do it.

Ms Beckett eventually quit her teaching job to care for her daughter, who continued to need a daily ventilator, and to devote herself to activism. She became nationally known as an advocate for children with disabilities and their families.

In an era before the protections guaranteed by laws such as the Americans with Disabilities Act of 1990, Ms Beckett testified before Congress, sometimes accompanied by Katie, talking while her daughter played with coloring books. Ms Beckett helped found Family Voices, an organization that seeks to support families of children with special needs. She has continued her work in recent years during challenges to the Affordable Care Act.

Because of her “tireless advocacy,” Kathleen Sebelius, then Secretary of Health and Human Services, said in 2012, “Medicaid policy has fundamentally changed to allow people with significant health care needs and disabilities to receive care at home”.

Julianne Ethel O’Connell was born in Cedar Rapids on November 9, 1949. Her father owned a wholesale lumber yard and her mother was a homemaker.

Ms. Beckett received a bachelor’s degree in history from what is now Clarke University in Dubuque, Iowa, in 1971 and a master’s degree, also in history, from the University of Dayton in Ohio in 1973.

Her marriage to Mark Beckett ended in divorce. The survivors include five brothers and one sister.

Katie Beckett, who was Ms Beckett’s only child, eventually graduated from college and joined her mother as an activist. She died in 2012 at age 34. By that time, more than half a million American children had received the Katie Beckett waiver.

“Being a mother,” Ms. Beckett wrote in her essay for the ACLU, “has been one of the most rewarding roles of my life.”

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