Julie Beckett, who helped children with disabilities stay at home, has died at the age of 73

Katie Beckett became one of several children – such as Ryan White, who became infected with HIV through blood transfusions, and Amber Tatro, who was born with spina bifida – whose health struggles made them celebrities of human interest in the 1980s. , The subject of nightly news coverage. , Sympathetic newspaper profiles and, finally, state and federal law.

Katie and her mother use their sudden media exposure to push for a change in government policy that shifts the focus of long-term care away from the organization to a family-centered approach. This development has helped millions of children to live significantly longer than in the past.

“Those who are directly influenced by our table and are able to share our stories, we are able to put a humane face on these issues,” Elena Hung, co-founder of disability-rights group Little Lobbyist, said in a phone interview. “We have all the data, all the policy analysis, all the experts talking about it, but it doesn’t really bring it home until we see who has been directly affected and can humanize those problems. I think Julie and Katie did it skillfully. “

Mrs. Beckett did not stop after her daughter returned home just before Christmas in 1981. She quit her job as a junior high school social studies teacher to take care of Katie and work full time as a staff member. She has traveled the country, lectured, lobbied, and taught parents of children with disabilities how to speak out for change in their community.

He has testified before Congress, written opinion articles and co-founded the Family Voices group, a non-profit organization that supports families with children with disabilities. He was also a leading figure behind the Family Opportunity Act, a 2005 law that extended Medicaid coverage to such families and created a series of programs to help those families get involved.

Even after Katie’s death, in 2012, Mrs. Beckett continued her activism. She helped lead the lawsuit against Republican efforts to repeal the Affordable Care Act in 2017 and to turn Medicaid into a blockchain program in the states – two measures that could result in a drastic reduction in funding for Katie Beckett’s family.

In a 2017 article for the American Civil Liberties Union website, he wrote, “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 Republican members of Congress.”

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