Katie Beckett wasn't supposed to live past the age of 10. After contracting viral encephalitis when she was five months old, Katie lost the ability to breathe on her own for most of the day, and she relied on a ventilator, often up to 15 hours a day, to live. But live she did, graduating from college and living independently in Cedar Rapids, Iowa, until she stopped breathing May 18, 2012, at the age of 34.
Katie's life, already inspirational, will be memorialized often over the next few weeks, and not merely because of how she lived it. Katie Beckett quite literally gave her name to a Medicaid waiver program that has allowed thousands of children like her to move out of hospitals and into their communities.
When Katie came down with encephalitis, she became eligible for Medicaid benefits. However, there was an enormous catch. As Medicaid rules stood in the late 1970s and early 1980s, if Katie lived at home her she would lose her Medicaid eligibility because her parents' income and assets would be counted against her. In order for Katie to receive the care she needed to live, she had to remain in the hospital, where she would retain her eligibility for Medicaid.
Katie lived in the hospital for three and a half years after getting sick, and all the while her mother lobbied senators, congressmen, and, eventually, President Reagan, to change the Medicaid regulations to allow patients like Katie to live at home and keep their Medicaid benefits. When Reagan realized that it would cost one-sixth as much for Katie to receive treatment at home, the Katie Beckett Medicaid Waiver was born. From then on, so long as a child with special needs who requires an institutional level of care can receive that care at home, and is otherwise eligible for Medicaid, she can qualify for coverage based only on her income and assets; her parents' funds will not disqualify her. However, the cost of the Medicaid beneficiary's in-home care cannot exceed the cost of her care in an institutional setting.
Since Katie Beckett became the recipient of the waiver that bears her name, more than half a million children have been able to leave the hospital and receive treatment at home.
Katie Beckett, the amazing individual, may have passed away, but her name endures.
To read NPR's remembrance of Katie Beckett, click here.
Click here to read a local Cedar Rapids story from KCRG.com.