The loss of Julie Beckett, who passed away on May 13th in Cedar Rapids, Iowa, was felt across the country. Individuals, families, current and former Members of Congress, Medicaid experts and advocates, and so many others responded with love, respect, and heartfelt tributes.

Tributes were posted from a variety of sources – from families for whom Julie’s advocacy changed their lives, to state and federal government bureaus, and from members of Congress including this speech by Senator Grassley on the floor of the Senate. Her legacy deserves them all.

Her advocacy story began in 1978 months after her daughter Katie was born. In Julie’s own words:

Being a mother has been one of the most gratifying roles of my life. As many parents will attest, there sometimes 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.

The Katie Beckett Waiver profoundly changed Medicaid and the lives of adults and kids with disabilities. Their families are able to welcome them home, and with the support of community services, they live in their own communities, attend school, have jobs, and live with the people who love them. 

When I first met Julie, I was a child health advocate at the Child and Family Policy Center, now Common Good Iowa, and Julie agreed to speak at an event I was managing. I didn’t know her story before meeting her and I bungled her introduction (and remain embarrassed to this day). Julie kindly corrected my mistakes and then with ease and grace talked about why kids needed Medicaid and coverage from the Children’s Health Insurance Program (CHIP). Staff from Senators Harkin and Grassley were panelists and she addressed each of them with the same connectedness, zeal, and request for their boss’s support. As a newer advocate in the field, I knew I was in the space of a true expert. I listened at the precision with which she spoke. I could see how the stories she told moved the audience and the Senate staff. I watched as she pressed them for a response, and left room for them to come to agreement at a later time. Her relationships with them were genuine and strong.

After Katie came home from the hospital, Julie kept going. By that time, she was in contact with parents and family advocates from around the country — moms and dads who also wanted the best care for their kids with disabilities and complex medical conditions. She worked as a Parent Consultant for the national Title Five program focused on maternal and child health, one of the first in that role. Other parents and leaders called her a true visionary, she knew there were copious policy opportunities at every level of government and that most often had the best ideas about them.

Out of the health reform work under President Clinton, Family Voices was created with Julie as one of the very first employees. To this day Family Voices has this mission: Family Voices is a national family-led organization of families and friends of children and youth with special health care needs (CYSHCN) and disabilities. We connect a network of family organizations across the United States that provide support to families of CYSHCN. We promote partnership with families at all levels of health care–individual and policy decision-making levels—in order to improve health care services and policies for children.

With Family Voices going, Julie helped establish the Family-to-Family Health Information Centers (F2Fs) in 2005. These are family-led centers funded by the Health Resources and Services Administration (HRSA.) Each state has an F2F, as does the District of Columbia, five U.S. territories, and three F2Fs serve tribal communities. Each F2F is staffed by highly-skilled, knowledgeable family members who have first-hand experience and understanding of the challenges faced by the families they serve. These uniquely qualified staff provide critical support to families caring for kids with disabilities particularly families ofchildren with complex needsand those fromdiverse communities. F2Fs also assist providers, state and federal agencies, legislators, and other stakeholders to better understand and serve CYSHCN and their families. 

The Family-to-Family program was flat-funded at $5 million for a decade and in 2016 received a $1 million increase in order to add five U.S. territories and three tribal communities. In honor of Julie and all she did for children and families across the country, Family Voices are asking the Appropriations Committees to increase the funding to $12 million annually. Kids and families deserve this increase as does Julie’s legacy. 

Thank you, Julie for all you taught us about advocacy, for never giving up, and for changing so many lives for the better. Your memory will continue to inspire us.