Katie Beckett, who was featured in the November 2011 Access Press History Note, died May 18 in Cedar Rapids, IA. She died at St. Luke’s Methodist Hospital, the same hospital where she made history. She was 34 years old.
Katie Beckett and her mother, Julie Beckett, were longtime advocates for children with disabilities. Julie Beckett is a co-founder of National Family Voices, a national group that advocates for children. Katie Beckett worked as a writer and public speaker. In November of 1981, when Katie Beckett was three, President Ronald Reagan allowed her to go home in time for Christmas and receive her Medicaid-funded treatment at home. At a press conference, Reagan explained how the child was being kept in the hospital because of Medicaid rules which forbade paying for her home care. That was even though the cost to the government would have been one-fifth of the $10,000-$12,000 the hospital charged per month. Her family worked tirelessly to get her to come home. Presidential intervention made that possible.
“When we see a case of this kind,” Reagan said, “it reveals that hidebound regulations can be a tremendous expense to the taxpayers and do no good for the patient.” The president’s actions set a new precedent. Not long after that, exceptions allowed parents like the Becketts, who made too much money to qualify for Medicaid, to receive at-home coverage of extreme medical costs for their children. This provision became known as the “Katie Beckett Waiver.”
In the three decades since, more than a half million children have received waivers to get their care at home, according to the Family Voices website.
In the fall of 2002, Katie wrote: “I started my advocacy career at age 10. It was not my choice but rather a path chosen for me. It was not until I was 12 or 13 that I realized the important work I was able to do because I was who I was, and how much this worked helped other kids. I realized that this was something I was born to do, so I was willing to take on the extra attention given to me by other students and teachers when I returned home even if it was embarrassing at times. Being singled out even for doing something so rewarding is uncomfortable and can create tension with other students. It made it difficult sometimes to fit in and just be normal.”
Dr. Sophie Arao-Nguyen, Executive Director of National Family Voices, said, “Katie was a great role model and quiet warrior whose work helped countless children across the United States.”
Federal Health and Human Services Secretary Kathleen Sebelius said, “Katie Beckett was a quiet hero and an inadvertent pioneer in the civil rights movement for people with disabilities. . . Over the past 30 years, the “Katie Beckett Waiver,” a Medicaid program, has provided over a half million children with disabilities the chance to live at home with their families and participate in their communities instead of living in hospitals and institutions.”