Katie Beckett, 34, whose battle with a childhood disease and federal bureaucracy made her a national symbol in the 1980s, died Friday. Her mother, Julie Beckett, told the Des Moines Register Friday that doctors predicted she would live until she was about 10. “We weren’t supposed to have her this long,” she said. “She lived a very long and pretty good life. It was tough, but she did pretty well. I don’t want anyone to be maudlin about it.”Because of Beckett and her family (as well as Tauke and President Reagan), the Medicaid Waiver system was born. Disabled children and adults benefit from these services. Some, like Beckett, need in-home medical services. Others, like my boy, use the Waivers to pay for vocational training and supported community living skills to eventually prepare him for living in his own home.
Julie Beckett said her daughter always breathed through a tracheotomy tube in her throat, and a machine helped her breathe at night. She had recently suffered digestive problems and had been in and out of the hospital. She was in pain Thursday. Friday morning, a nurse noticed that she had stopped breathing. Efforts to revive her were unsuccessful...
Beckett contracted viral encephalitis five months after her March 9, 1978, birth in Cedar Rapids. She recovered after three years in pediatric intensive care, but the resulting respiratory condition required continued therapy and use of a respirator 12 hours a day.
“I was forced to live in a hospital for the first 3 1/2 years of my life because insurance companies would not pay for services to let me live at home,” Beckett wrote The Gazette in 2007.
The federal health insurance program Medicaid took over Beckett’s care after her parents’ private insurance hit its $1 million benefit limit. At the time, Medicaid policy required a hospital stay for coverage of the respirator, even though the device could be used at home.
Julie Beckett convinced Tom Tauke, then a Republican congressman from Dubuque, that it would be cheaper and easier to provide Katie’s needed care and services at home. Tauke sponsored legislation creating what became known as the “Katie Beckett waiver,” which made in-home and community health care a matter of policy. President Ronald Reagan cited the Becketts’ situation as an example of unreasonable Medicaid regulations.
I recently spoke at an event, where I discussed the Waiver system and its origins. It was a good reminder of politicians and constituents coming together to recognize that there are better ways to accomplish something. Beckett will be missed, but her legacy will live on.
My condolences to Katie's family.