Julie Beckett, Who Helped Disabled Children Live at Home, Dies at 72

Julie Beckett, Who Helped Disabled Children Live at Home, Dies at 72

We have informed hundreds of parents of children with disabilities about the Disabled Child Living at Home Medicaid waiver in Mississippi.  This waiver provides Medicaid-paid medical care and therapies for children with significant disabilities, regardless of the assets and income of their parents.  This waiver exists in many other states, where it is often named for the child for whom it was first established – Katie Beckett.  The Katie Beckett Waiver has allowed hundreds of thousands of children to receive medical care without having to live in a hospital.

Julie Beckett, the mother of Katie, pushed for changes to Medicaid that enabled hundreds of thousands of families to raise and care for their disabled children at home.  Julie Beckett died on May 13, 2022 in Cedar Rapids, Iowa. She was 72.

Katie Beckett was born in March 1978, and just four months later she contracted viral encephalitis. The disease paralyzed her diaphragm and left her dependent on a ventilator and other equipment.  Within three years, the Becketts had exhausted their $1 million health insurance policy. They applied for government support, but were told Medicaid would not cover in-home care.

Faced with the prospect of seeing her daughter grow up in a hospital, Ms. Beckett invited her congressman, Tom Tauke, to visit Katie. She presented him with data she had collected showing that allowing children like her daughter to live at home was not just better for the families but would save the government money.

On a flight to Iowa with Vice President George Bush, Mr. Tauke, a Republican, pleaded the Becketts’ case. Mr. Bush was so moved that he immediately told President Ronald Reagan about it.  At a news conference in November 1981, Reagan singled out the Becketts’ story.

“Now, by what sense do we have a regulation in government,” he asked, “that says we’ll pay $6,000 a month to keep someone in a hospital that we believe would be better off at home?”

Two days later, Richard S. Schweiker, the secretary of health and human services, issued a waiver stating that Medicaid would in fact cover Katie’s care at home. By the next day, 247 families had called asking for the same treatment. They all got it.

Reagan established a commission to work out the criteria for what came to be known as Katie Beckett waivers, and to encourage states, which administer Medicaid, to adopt them. Today every state has a Katie Beckett program.

Katie and her mother used their sudden media exposure to push for changes in government policy that would move the focus of long-term care away from institutions and toward a family-centered approach. That development has helped millions of children live significantly longer lives than they might have in the past.

“When we have those who are directly affected at the table and able to share our stories, we’re able to put a human face on these issues,” Elena Hung, a co-founder of the disability-rights group Little Lobbyists, said in a phone interview. “We’re going to have all the data, all the policy analysis, all the experts speaking on these issues, but it really doesn’t bring it home until we can see who is directly affected, and humanize those issues. I think Julie and Katie did that expertly.”

Ms. Beckett did not stop once her daughter returned home, just before Christmas in 1981. She left her job as a junior high school social studies teacher to care for Katie and work as an activist full time. She traveled the country, lecturing, lobbying and teaching parents of children with disabilities how to advocate for change in their communities.

She testified before Congress, wrote opinion articles and co-founded the group Family Voices, a nonprofit organization that supports families of children with disabilities. She was also a leading figure behind the Family Opportunities Act, a 2005 law that further expanded Medicaid coverage for such families and created a series of programs to help those families engage with one another.

Even after Katie died, in 2012, Ms. Beckett continued her activism. She helped lead the charge in 2017 against Republican efforts to repeal the Affordable Care Act and turn Medicaid into a program of block grants to states — two moves that could have meant drastic reductions in funding for families on Katie Beckett waivers.

“It’s unacceptable to Katie’s memory and to people with disabilities across the country that the services I fought so hard for are now being threatened by Republican members of Congress,” she wrote in a 2017 article for the website of the American Civil Liberties Union.

By then, it was a given that the campaign to protect the Affordable Care Act would feature the faces and families of people directly affected by the proposed changes — a humanizing strategy pioneered by Ms. Beckett.

“She was truly a groundbreaking hero,” said Alison Barkoff, the acting head of the Administration for Community Living, a federal agency that facilitates family- and community-based care. “Julie, together with her daughter Katie, changed the world for millions of people with disabilities.”

Though she was widely regarded as one of the most significant figures in the history of the disability rights movement, Ms. Beckett insisted that she was simply looking out for her daughter, and that everything flowed from there.

“There comes a moment in parenting,” she wrote in 2017, “where you discover strength you didn’t know you had — all because your child needs you.”