Julie Beckett, who helped disabled children live at home, dies aged 73

Katie Beckett Became One Of The Kids – Like Ryan Whitepeople who have acquired HIV through a blood transfusion, and Amber Tatropeople born with spina bifida – whose health struggles in the 1980s made them popular celebrities, subjects of the nightly news, sympathetic press records and Finally, there are federal and state laws.

Katie and her mother have used their sudden appearance in the media to push for changes in government policy to shift the focus of long-term care away from educational institutions. and towards a family-centered approach. That development has helped millions of children live significantly longer than in the past.

“When we have those affected directly at the table and can share our stories, we can put a human face on these issues,” said Elena Hung, co-founder of the group Little Lobbyists for the rights of people with disabilities, said in a phone interview. “We will 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 gets hurt. directly affect and humanize those issues. I think Julie and Katie have done it expertly. ”

Mrs. Beckett didn’t stop once her daughter returned home, just before Christmas 1981. She left her job as a middle school social studies teacher to care for Katie and work as a global activist. time. She has traveled across the country, giving presentations, lobbying and teaching parents of children with disabilities how to advocate for change in their communities.

She has testified before Congress, wrote opinion pieces, and co-founded Family Voices, a nonprofit organization that supports families with children with disabilities. She is also the leading figure behind the Families Opportunity Act, a 2005 law that further expanded Medicaid coverage to such families and created a series of programs to help families that’s tied together.

Even after Katie passed away, in 2012, Mrs. Beckett continued her active activities. She helped lead charges in 2017 against Republican efforts to repeal the Affordable Care Act and turn Medicaid into a block-funding program for states — two moves that could means a significant reduction in funding for Katie Beckett exempt families.

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

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