Cedar Rapids woman who changed Medicaid dies

CEDAR RAPIDS - 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.”

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.

“Her little heart was just done,” her mother said. “She was finished. She just needed peace.”

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.

“Katie was a wonderful, strong, determined individual, and because of her, over 1 million people across the United States live at home and receive treatment through the Medicaid Home and Community Based ‘Katie Beckett' waiver program,” Tauke said in a statement issued by his office.

Beckett graduated from Regis High School and Mount Mercy College and lived independently in Cedar Rapids. She stayed active in efforts to provide opportunities for the disabled and their families.

“I'm amazed at the number of parents of children with disabilities who don't expect their children to get jobs and don't expect them to go to college,” Beckett said in 2000. “I want to help the parents understand that children with disabilities can be productive members of society.”

“Katie Beckett was a brave young woman whose family had to fight to bring her home from the hospital as a child, and who kept fighting to create opportunities for Americans with disabilities for the rest of her life,” Sen. Tom Harkin, D-Iowa, said in a statement issued by his office. “Katie and her mother Julie made America a more welcoming place for children and adults with disabilities, and hundreds of thousands of children and families have benefitted from the Medicaid waiver that bears Katie's name.”

Services for Beckett are pending at Teahen Funeral Home in Cedar Rapids.