As Julie wrote in an advocacy article for the ACLU:
"There comes a moment in parenting where you discover strength you didn't know you had--all because your child needs you.
For me, that moment began 39 years ago when my daughter Katie contracted viral encephalitis, an inflammation of the brain at just four months old. It compromised her tiny immune system and did irreversible damage to her body, requiring her to use a ventilator to breathe and leaving her partially paralyzed. Because of Medicaid rules at the time, we could not take Katie home to manage her care, as we wished, but instead, we were forced to keep her hospitalized for three years as we fought the system.
Our family reached out to everyone until eventually word of Katie’s plight reached President Ronald Reagan himself, who created the Katie Beckett Waiver in an act of compassionate conservatism. The creation of a new federal program allowed people with disabilities to use Medicaid dollars to get health care while living in the community. Ultimately, the Katie Beckett Waiver took effect and Katie came home." (full article)
That waiver was the first Medicaid Home and Community Waiver, a program that has gone on to allow thousands of families to care for their loved ones at home rather than in institutions. Julie and Katie continued to be powerful advocates for families of children with special health care needs and disabilities. Katie Beckett passed away on May 18, 2012, at 34 years old (more than three times the age doctors said she would reach). This NPR article shares more about Katie's story.
As a founder of Family Voices, along with Polly Arango and Josie Woll, Julie was a key family partner with MCHB in helping to draft the concepts of family-centered, culturally competent, coordinated community-based care. Julie was a passionate spokesperson for Family-to-Family Health Information Centers (F2Fs) and she spent countless hours on Capitol Hill convincing members of Congress that they needed to provide federal funding for F2F programs, leading to the federally-funded F2F program that has been in place since 2005. In addition to her critical roles as co-founder and staff of Family Voices, Julie served in multiple roles on the Family Voices Board of Directors.
Beyond Family Voices, Julie later became Co-Chair of the Executive Committee for the Family Partnership Network under the American Academy of Pediatrics (AAP) and served on the AAP Parent Advisory Group with the Section on Home Care, in addition to other continuous advocacy efforts over the years.
At its 2021 national conference, Family Voices honored Julie with The Family Voices Legacy Award in recognition of her outstanding lifetime contributions to health care policy and services that have improved the lives of children with special health care needs and their families. You can watch the tribute video here.
Our hearts are full of gratitude for all that Julie has done to help families and for the legacy of leadership that Julie leaves. May it inspire each of us to recognize the power of our voices to improve the world around us.
When available, Family Voices will post information on our homepage about service arrangements for Julie, where to send condolences, and ways we can remember and support her ongoing legacy.
