In Memorium: Katie Beckett, March 9, 1978 – May 18, 2012

June 6, 2012

Where It All Began.

Five months after her birth in 1978, Katie Beckett contracted viral encephalitis, a brain infection, that caused her to lapse into a coma. Katie eventually recovered, but the encephalitis and resultant coma left her partially paralyzed and unable to breath without the use of a respirator twelve hours a day. At that time, doctors predicted Katie would live only until she was ten years old. What was possibly more devastating for the family was being told that the only way Medicaid would pay for Katie’s life-saving, expensive medical treatment was if Katie remained in the hospital.

Thus began a three year long fight for Katie’s mom, Julie, whose primary goal was to bring her daughter home with the life-saving equipment she needed.

The Changing of A Health Care Policy.

At the time of Katie’s encephalitis and subsequent medical issues, Medicaid rules required patients who needed a respirator to remain in a hospital to receive financial coverage for the equipment. This was despite the fact that the device could be used at home. Julie took on Medicaid, fighting this rule, with the single goal of wanting only to bring her young daughter home to be with her family. Julie never gave up, eventually taking her battle to the steps of the White House and to the ears of then President Ronald Reagan.

President Reagan cited Katie’s case as an example of “hidebound regulations” that caused “tremendous expense to the taxpayers.”  The rules, he said, forced Katie to remain in the hospital even though she would be better off at home. With President Reagan’s support, Medicaid rules were finally about to change.

Within a day, Medicaid waived the rules to allow Katie to return home without the loss of federal support, and with the life saving equipment she needed to survive.  A review board was also created and as a result of this board, the “Katie Beckett” Waiver was established. The Waiver was instrumental in changing the lives of hundreds of thousands of children by allowing them to receive their care at home as opposed to being raised in a medical institution.

Finally, after most of the first three and a half years of her life spent living in an Iowa hospital, Katie could come home. Not only did Julie succeed in changing her daughter’s life, she succeeded in changing the lives of thousands of children with disabilities.

Since the implementation of the Katie Beckett Waiver, more than a half-million children have received life-extending medical care at home. Through Julie’s initiative, driven by her daughter Katie, she enabled change in health care policy for children with complex medical needs.

Why the Katie Beckett Waiver is so important?

Because without this Medicaid waiver, thousands of children with special health care needs might go without necessary health care treatment, or possibly be institutionalized in order to qualify for the Medicaid benefits that would cover the necessary care.

Katie and Julie – After The Katie Beckett Waiver.

Katie and Julie remained active as disability advocates throughout the years. Julie became one of the founders of National Family Voices, using her advocacy skills on behalf of families all over the nation. Katie provided the voice for people living with disabilities.

Katie went on to complete college in 2001. She continued on with speaking publicly as a disability advocate, and was writing her first novel at the time of her passing. She remains a changing force in the lives of many children and their families.

Thank you Katie, and Julie, for your compassionate work for the rights of children with disabilities!