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the legacy of Julie Beckett, a true advocate

If you have a child with special needs, you are probably familiar with the name Katie Beckett.  Nowadays we often hear Katie Beckett when referring to a specific type of Medicaid waiver (formally called TEFRA for the Tax Equity and Fiscal Responsibility Act of 1982) that allows for children with certain disabilities and complex medical needs to receive Medicaid benefits while living at home despite their family’s income otherwise being too high to qualify.


Before Julie Beckett took action, many children with disabilities nationwide were required to live in institutional settings; receiving long-term treatment while living at home with their parents often meant losing their Medicaid coverage. Beckett, whose advocacy work led in part to the creation of a waiver program that changed this rule, passed away earlier this year at the age of 72.

“Beckett, whose daughter went on to graduate from college and live to age 34, dedicated her life to advocating for disability rights.”

In 1978, Beckett’s 6-month-old daughter, Katie, contracted encephalitis and was placed on a ventilator that she would need indefinitely. When Beckett learned that Katie would have to spend the rest of her life in the hospital, she outlined for policymakers the significant cost savings — roughly $10,000 a month (in 1982 dollars!) — in seeking care for her daughter at home versus in a hospital setting.


Ultimately, her plea for help reached the White House and, in 1982, the Reagan administration passed a law widely known as the Katie Beckett Medicaid Waiver. In most states, it allows children under age 19 who require a high level of care to receive that care at home rather than an institution — without taking into account income from parents that may otherwise make their child ineligible for Medicaid.


Beckett, whose daughter went on to graduate from college and live to age 34, dedicated her life to advocating for disability rights. From testifying before Congress and partnering with lawmakers on shaping key legislation to founding a nonprofit that supports health care reform for families of children with disabilities, Beckett was hailed as a champion for the disability community for more than 35 years.


“A parent’s strength is a powerful thing,” Beckett wrote in an essay for the ACLU in 2007. “It’s time for all parents to come together to tell Congress to save Medicaid for people with disabilities.”


Without Julie’s impact and relentless fight for what was best for her daughter, millions of Americans would be worse off.  She was truly an incredible example of the power of advocacy and positive impact that even one individual can have on generations to come.

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