Katie Beckett, whose struggles with childhood disease and federal bureaucracy brought landmark changes to the federal-state Medicaid program allowing children with disabilities to live at home, has died in Iowa, her mother said.
Katie Beckett died at St. Luke's Hospital in Cedar Rapids on Friday after suffering digestive problems, Julie Beckett said. She was 34.
Beckett spent most of the first three years of her life at St. Luke's after encephalitis infected her brain, caused a coma and left her with severe breathing problems, which required the use of a respirator 12 hours a day. Doctors predicted she would live until she was 10.
"We weren't supposed to have her this long," Julie Beckett told The Des Moines Register. "She lived a very long and pretty good life."
Her parents' insurance ran out, so the case fell to Medicaid, the federal-state program that helps pay for health care for the disabled and low-income families with children. Doctors said she could leave the hospital with proper support at home, but Medicaid refused to pay. At the time, Medicaid policy required a hospital stay for coverage of a respirator, even though the device could be used at home.
Then-U.S. Rep. Tom Tauke, an Iowa Republican, brought the family's plight to the attention of President Ronald Reagan, who took up the cause. The case led to development of the "Katie Beckett waiver," under which Medicaid pays for home care for disabled children. The U.S. law was passed in 1982, and Iowa's version took effect in 1984.
Beckett graduated from Mount Mercy College in 2001, and she later took writing courses at Kirkwood Community College, her mother said. She was close to completing a novel and was thinking about going back to school to become a teacher.
More than 11,000 Iowa children are enrolled in the Katie Beckett waiver program. Chuck Palmer, director of Iowa's Department of Human Services, praised the Becketts for pushing government officials to change their policies.
"This is another example of where a committed and determined family can change the system, not only for their family but for many other vulnerable people," he said.
U.S. Sen. Tom Harkin, an Iowa Democrat who often champions disability issues, knew Katie Beckett for decades.
"Katie was a very brave young woman," he said. "She had a lot of chronic pain, but through it all she just maintained a focus on improving herself and becoming more independent and achieving a good education."
Her funeral is scheduled for 10 am. Friday at St. Matthew Catholic Church in Cedar Rapids.