Katie Beckett spent most of the first three years of her life St. Luke’s Hospital in Cedar Rapids Iowa in the Pediatric Intensive Care Unit Beckett after viral 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.
With the family insurance depleted, 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.
The Iowa Representative, Congressman Tom Tauke turned a spotlight on the families problems eventually garnering the support of Senators Chuck Grassley and Tom Harkin, President Ronald Reagan and Vice-President George H. Bush. Katie finally made it home on December 19, 1981 but only after Medicaid was pushed to adopt an exception to their home care policy.
Today, this monumental legislation is still referred to as the “Katie Beckett law” and now over a million individuals who would be living in hospitals or care centers are cared for at home and in their communities. She and her family continued to act advocates for people with disabilities and special health care needs, testifying many times before Congress, and speaking across the country telling her story and making sure people paid attention to “including” people with disabilities in everyday life. She wrote “I do have mothers and some fathers who come up to me crying because they are on the Katie Beckett waiver or they have been helped by Family Voices and I do get invitations to speak or appear from politicians and highly respected groups like the Robert Wood Johnson Foundation, Children’s Hospital of Boston and the Princess Diana Foundation.”
Known as Katie to many, her life and legacy will long be remembered. The secretary of Health and Human Services, Kathleen Sebelius, called Ms. Beckett “an inadvertent pioneer in the civil rights movement for people with disabilities” and the inspiration for regulations that have allowed more than 500,000 disabled children to live at home since 1981
Sen. Tom Harkin, the Democrat from Beckett's home state of Iowa and one of the chief authors of the Americans with Disabilities Act, said Katie is a symbol of what the disability civil rights law set out to establish. "It's about making sure that we don't separate out people with disabilities, but make them part of the families, making them part of the communities, part of the schools — just an integral part of society. That's what Katie fought for all of her life."