Julie Beckett, mother who championed children with disabilities, dies at 72

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

“There sometimes comes a moment in parenting,” Ms. Beckett once observed, when “you discover strength you didn’t know you had — all because your child needs you.”

That moment came 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 infant daughter, Katie, contracted viral encephalitis. The disease, a life-threatening inflammation of the brain, left Katie in a coma for days. When she awoke, she was partially paralyzed and required a ventilator to breathe. Physicians predicted that she would not live past age 10.

But Katie’s condition eventually improved, enough that Ms. Beckett became convinced that she could safely be taken to home to grow up there with proper medical care. By age 3½, Katie had scarcely known any home but her hospital room.

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

“We’re not poor enough to be eligible, but we’re not rich enough to handle it,” Ms. Beckett told the Associated Press in 1981. “No one would be rich enough to handle all the things she needs.”

The irony was that, by all accounts, it cost far more to care for Katie in the hospital than it did to attend to her needs at home. Ms. Beckett took her cause to an Iowa congressman, Thomas J. Tauke (R). He brought it to the attention of Vice President George H.W. Bush, who in turn flagged it for President Ronald Reagan. Reagan, ever the champion of smaller government, highlighted Katie’s story as a case in point of the “hidebound” federal bureaucracy.

“By what sense,” Reagan remarked at a media conference in November 1981, “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, but the family cannot afford one-sixth of that amount to keep them at home?”

In short order, Richard S. Schweiker, Reagan’s health and human services secretary, issued a waiver — later dubbed the Katie Beckett waiver — that allowed Katie to leave the hospital and still receive government benefits. She was home in time for Christmas and received a doll from the Reagans with the wish of “the loveliest 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 always open, someone was always peeking in. If you wanted to tickle Katie, or do anything that parents do with their kids, you just couldn’t do it.”

Ms. Beckett eventually left her teaching job to care for her daughter, who continued to require daily use of a 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 in legislation such as the 1990 Americans With Disabilities Act, Ms. Beckett testified before Congress, sometimes with Katie in tow, speaking as her daughter amused herself with coloring books. Ms. Beckett helped found Family Voices, an organization that seeks to support families of children with special needs. She continued her work through recent years during challenges to the Affordable Care Act.

Because of her “tireless advocacy,” then-Health and Human Services Secretary Kathleen Sebelius said in 2012, “Medicaid policy fundamentally shifted 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 Nov. 9, 1949. Her father owned a wholesale lumberyard, 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. Survivors include five brothers and one sister.

Katie Beckett, who was Ms. Beckett’s only child, ultimately graduated from college and joined her mother as an activist. She died in 2012 at 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 gratifying roles of my life.”