Katie Beckett became one of many children — like Ryan White, who contracted HIV through a blood transfusion, and Amber Tatro, who was born with spina bifida — whose health problems made them human-interest celebrities in the 1980s, the subject of nightly news coverage. , sympathetic newspaper profiles and, ultimately, state and federal law.
Katie and her mother used their sudden media attention to push for changes in government policy that would shift the focus of long-term care from institutions to a family-centered approach. This development has resulted in millions of children living significantly longer than in the past.
“If we have people directly involved at the table and can share our stories, we can put a human face on these issues,” said Elena Hung, co-founder of the disability rights group Little Lobbyists. in a telephone interview. “We’re going to have all the data, all the policy analysis, all the experts speaking on these issues, but it doesn’t really bring it home until we can see who’s directly involved, and humanize those issues. I think Julie and Katie do that skillfully.” have done.’
Mrs. Beckett didn’t stop there when her daughter returned home just before Christmas in 1981. She quit her job as a high school social studies teacher to care for Katie and work full-time as an activist. 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 Family Voices group, 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 expanded Medicaid’s coverage of such families and created a series of programs to help those families connect with each other.
Even after Katie died, in 2012, Ms. Beckett continued her activism. She helped charge the 2017 lawsuit against Republican efforts to repeal the Affordable Care Act and turn Medicaid into a program of block subsidies to states — two steps that could have resulted in drastic cuts in funding for families on Katie Beckett waivers. .
“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 being threatened by Republican members of Congress,” she wrote in a 2017 article for the American website. Civil Liberties Union.