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, died this past month at 72.
Named in her daughter’s honor, the groundbreaking Katie Beckett Medicaid Waiver program gave millions of children with complex medical needs the right to receive long-term health care at home without their parents’ assets and income disqualifying them for Medicaid.
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 seeking care for her daughter at home versus in a hospital.
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.”
