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The Case of One Little Girl Leads to Big Medicaid Changes for Millions

Photo of Katie BeckettKatie Beckett, born in 1978, was 5 months old when she contracted viral encephalitis, a condition that left her ventilator-dependent for 12 hours a day.  After her parents’ health insurance was depleted, Medicaid covered the cost of her care, but only in the hospital.  Although her doctors said she could live at home with proper support, according to the Medicaid policy at the time, the ventilator could only be covered in the hospital, even though the cost was significantly more than it would have been to treat Katie at home. (After leaving the hospital her parents’ income and resources would have been counted in determining Katie’s eligibility, and she would have lost Medicaid.)

Katie’s mother, Julie, brought the case to the attention of Congress and then-President Ronald Reagan, and just before Christmas in 1981, the eligibility rules were waived so that Katie could go home. In 1982, the Tax Equity and Fiscal Responsibility Act (P.L. 97-248) contained the “Katie Beckett Option,” which gave all states the option to cover in-home treatment for children with disabilities who required an institutional level of care, without regard to parental income or resources, so long as the cost of care at home was not greater than the cost of care in an institution.

Julie Beckett continues to be a tireless advocate for children with disabilities.  As for Katie, despite requiring home-care for respiratory issues throughout her life, she graduated college with a degree in English and creative writing, and was writing a novel. She held various jobs and joined her mother in advocating for the rights of people with disabilities.  Katie Beckett died in 2012 at the age of 34. Learn more about Katie’s story.

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