In Memoriam: Julie Beckett, Family Voices Co-founder

It is with great sadness we share that Julie Beckett, one of the founders of Family Voices, passed away on Friday, May 13, 2022, at her home in Cedar Rapids, Iowa.

Headshot of Julie Beckett, wearing a light purple shirt and a gold necklace.
Passionate, visionary, and inexhaustible, Julie was an amazing advocate for improving health care for children with special health care needs and disabilities throughout our country for over 35 years, beginning with her daughter Katie Beckett.

Julie made an incredible impact on families of children with special health care needs and disabilities through her advocacy.  Her determined work on behalf of her daughter, Katie, resulted in the creation of the 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.  She co-founded Family Voices to promote the inclusion of families’ voices in all levels of health care decision-making for children, work that Family Voices continues almost 30 years later.  Julie’s advocacy helped create federally-funded Family-to-Family Health Information Centers (F2Fs) in every state and Washington, D.C. (now also serving five U.S. territories and three tribal communities).  F2Fs provide critical support to millions of families of children with special health care needs (CYSHCN).  Julie’s legacy lives on.

At its 2021 national conference, Family Voices honored Julie with The Family Voices Legacy Award and a tribute video 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.

Julie’s Story

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.

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.

Remembering Julie

“On behalf of the Maternal and Child Health Bureau, I want to express our sadness at the passing of Julie Beckett and our deep appreciation for her life. Her advocacy in the early 1980s for her daughter Katie led to her successfully persuading President Reagan to allow an exception to Medicaid rule so that her daughter could leave the hospital and receive services at home. This exception resulted in a federal program that still exists today allowing states to develop waiver programs for home and community-based services. For those of us at MCHB, her partnership with Bureau and Division leaders like Vince Hutchins and Merle McPherson and others promoted a system of care where families are at the center of policy and program design. As a co-founder of Family Voices and key architect of the Family Opportunity Act of 2005, which created the Family to Family Health Information Centers program, Julie was a tireless advocate, always aware that there was more to do in Iowa and beyond. Her vision of a system where families are always at the table continues to guide our work at MCHB. Her legacy endures. “

– Dr. Michael D. Warren, Associate Administrator, Maternal and Child Health Bureau

“On Friday, our nation lost a civil rights pioneer when Julie Beckett passed away. We honor her by continuing our work to ensure people with disabilities can live in the community with the same opportunities as those without disabilities.”

– Secretary Xavier Becerra, U.S. Department of Health and Human Services

“Julie was one of those larger than life people, certainly she was in my life. With no real preparation whatsoever, she became the fulfillment in the best possible way of what the founders of our country envisioned in creating a democratic government that responded to a citizenry guaranteed the rights of freedom of speech and freedom to seek redress of grievances.

The amazing thing about Julie was not that she figured out how to use those rights to benefit not only her daughter but also to benefit millions of other children and their families, too.

Julie seemed to me larger than life because she had the inexplicable ability to be both breathtakingly idealistic and profoundly realistic – she didn’t let either weaken her commitment to the other.

To put it differently, she had boundless energy, affection, and good cheer, always ready to take on more work, always determined to do what she believed to be right. She burned the candlestick both ends, as the saying goes, which may in a poetic sort of way help to explain why she has left us far too soon.

In the last decade of her life, Julie never struck me as any less committed or tireless in her advocacy. The fact that she was able to do so despite Katie’s death at a very young age is astonishing. In life and in death, Katie was always top of mind for Julie. She was a phenomenal advocate for Katie, because she was first and foremost Katie’s phenomenal mother.

Speaking as someone with a long history with Family Voices, I recognize that for the organization Julie’s death marks the end of an era. She was the last survivor of the three founders of Family Voices – Polly, Josie, and Julie – the three founding mothers as some referred to them, relentless in holding the organization accountable to their vision of it as an organization led by and for families, helping each other to care for and advocate as effectively as possible for their children, no matter who they were or what they had or didn’t have.

I am so glad you were able to honor Julie last year, and I am honored that my picture with Julie is included. Thank you very much. “

– Peters Willson, Former Family Voices Board Member

“Julie was a Rock Star and a wonderful loving person. She knew what mattered, how to set priorities and how to get things done. She never stopped working for what was right.  We will all miss her.”

– Judy Palfrey, Harvard Medical School

“On behalf of both myself and the CMC CoIIN leadership team at BU, I want to share my sincere condolences with you all and the entire family leadership community on the passing of Julie Beckett.

She was such a powerhouse, as a person and an advocate – 10 pounds of dynamite in a five pound package. I will miss her wisdom, energy and example very much.”

– Meg Comeau,
Collaborative Improvement and Innovation Network (CoIIN) to Advance Care for Children with Medical Complexity (CMC)

“I was very sorry to read this news about the passing of Julie Beckett. I was lucky enough to get to hear her speak a couple of times about her experience and journey and it always moved me, frustrated me and then gave me hope.

The words and the story that were crafted by Family Voices to honor and remember Julie are profound and moving. Because of Julie’s tireless advocacy on behalf of her daughter, her family and all the other families like hers, things have changed for the better, we still have a long ways to go, but-for Julie and her Family Voices co-founders and all of YOU who continue to move the conversation forward through thick and thin….I offer my deepest thanks and condolences on your collective loss.”

– Jennifer Kyle, UnitedHealthcare

“Thank you for writing such a heartfelt message on Facebook about Julie’s passing. What a remarkable, enduring partnership you and Julie and Polly and Betsy created and nurtured over the years at Family Voices. Julie’s gift of advocacy was unmatched. Her commitment to family-centered care was unabashedly strong. Her support of colleagues in the field was endless. She will be forever remembered. ”

– Peggy McManus, Got Transition

“Julie was a force—for good, lots of good. I’m so sad to hear of her death. I’m glad I got to know her and Katie, and meet many families that benefited from being able to care for their kids at home. (And the many Family Voices members I’ve met who’ve shared their stories.)”

– Joe Shapiro, NPR

“She touched so many of our lives through her leadership, mentorship and advocacy. I’m keeping her family and the FV family in my prayers.”

– Lisa Cook-Gordon, Michigan Family Voices

“Julie was an inspiration to me and the countless lives she and Katie touched. Hoping we can all find comfort knowing that she and Katie are reunited and will always be a guiding light in our lives.”

– Tara Hayes,
RIPIN, Rhode Island Family-to-Family Information Center and Family Voices Affiliate Organization

“Julie was an incredible mentor to so many far beyond those she actually met.  We need to honor her legacy by continuing our commitment to support emerging parent leaders to carry on advocacy for children with healthcare and developmental needs.”

– Liz Healey, Family Leader

“What a powerful legacy. We reference the Katie Beckett waiver all the time and did so in a recent training. Changed the lives of so many people. I have been fortunate to witness those who got to leave institutional care and live out their lives in the community as a result of this critical advocacy. Our hearts go out to everyone who loved her, worked passionately alongside of and and knew her.”

– Mary Anderson Hartley,
PEAL Center, Pennsylvania Family-to-Family Information Center and Family Voices Affiliate Organization

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Our Vision

With families at the center of health care, all children and youth reach their full potential and health disparities are eliminated.

Our Mission

Family Voices is a national organization and grassroots network of families and friends of children and youth with special health care needs and disabilities that promotes partnership with families—including those of cultural, linguistic and geographic diversity—in order to improve health care services and policies for children.

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