At the 2018 ACEs “Action to Access” Conference, more than 850 health care providers, social workers, researchers, policymakers and teachers converged at the San Francisco Hyatt from all over the United States and countries as far as Australia and New Zealand.
The conference, co-hosted by the Center for Youth Wellness and ACEs Connection and co-presented by Genentech and JPB and also sponsored by Kaiser Permanente, was at turns passionate, heartbreaking, transformative and joyful as speakers and participants wrestled with how to break down barriers to a movement that could change society.
“The way we continue to catalyze and inspire each other in this work is inspiring and humbling,” said Nadine Burke Harris, MD, CEO of the Center for Youth Wellness, who told the audience about the tremendous enthusiasm for trauma-informed care she found in a recent visit to Scotland. “The movement has taken off, and it’s spreading.”
Some of the key takeaways:
Rapidly expanding ACEs science research has the potential to break down barriers to access. “It’s hard to imagine how fast the science of ACEs is advancing,” CYW director of research Monica Bucci, MD, declared at the Pediatric Symposium on October 15. “The good news is that researchers and institutions across the country are uncovering the missing links between adversity and toxic stress…Imagine if we could empower pediatricians to prevent, screen and heal the physiological effects of toxic stress just as we do for anemia with routine care.” Some exciting recent areas of research include intergenerational ACEs, potential biomarkers for ACEs, and the economic impact of ACEs, all of which can help doctors and policymakers better serve families at risk.
Access to trauma-informed care is on the rise in schools, clinics, hospitals, social services, and child welfare systems worldwide. “If we continue to show the world and each other how rapidly this movement is growing, more people will join,” said Jane Stevens, founder and publisher of ACEs Connection, at the conference. She pointed to documented examples of remarkable outcomes of trauma-informed care in organizations from California to Tennessee, from fewer visits to the ER reported by clinics in Pueblo, Co., to a juvenile detention facility in San Diego whose reported rate of violence dropped to zero. In trauma-informed care: “There is no them and us,” Stevens said. “There is just us. Adverse childhood experiences are universal. ACEs science is apolitical; toxic stress from ACEs is a human condition and the consequences affect everyone. No matter who you are or where you live or who you vote for, if you are put under enough stress, you will suffer.”
While this issue affects us all, the concept of ACEs is also evolving to take into account historical trauma, which may improve access for the poor and marginalized. “What does it look like to work toward a more just and equitable future?” asked Renee Boynton-Jarrett, MD, ScD, associate professor of pediatrics at Boston Medical Center. “We have to appreciate that the epidemic of ACEs disproportionately impact those at the margins of society. Systemic inequities, structural violence, institutional racism, chronic divestment in neighborhoods: All of these are factors in the story but they are often invisible.” As a result, a number of researchers have expanded their ACEs screens to include violence outside the home; being bullied by a peer or adult; involvement with the foster care system; living in a war zone or a dangerous neighborhood; losing a family member to deportation; or experiencing racism.
Barriers to access are many and staggering, and the first step to solving them is to listen. “You need to empathize and listen intently to whom the people are that you’re serving; you urgently need to learn how much you don’t know,” said Christopher Rudd, the founder and lead activator of the Chicago-based, black-owned design firm ChiByDesign. “By talking with youth in detention, for example, we learned that their rap sheet could lead to their entire family getting kicked out of their housing, putting parents into some terrible choices. We started a program called “Erase Your Juvie Record,” which resulted in expungement. And all this was only made possible through listening.”
Metrics are crucial, but so is storytelling. “Research shows that lived experiences can be the most powerful tool for educating people about ACEs,” said Jabeen Yusuf, director of marketing and communication at CYW who oversaw the creation of a powerful video on ACEs called “The Things We Carry.” Just as stories about ACEs can educate people about toxic stress, Yusuf said, the power of storytelling can also help people build resilience through narratives that incorporate the importance of sleep, nutrition, exercise, mindfulness, mental health and healthy relationships.
Self-care is not a fringe benefit; it’s a necessity of doing this work effectively: To combat pervasive caregiver burnout, speakers across the conference suggested promoting a culture of self-care, realistic boundaries, and seeking support when needed. In the morning panel on ACEs in the Conference Room, First National Bank President Clayton Lodes said, “We need [the leaders in this room] to make sure your staff is healthy – if your staff is not healthy, who is going to replace them?” At his banks in Oklahoma, Lodes made a Marketplace Chaplain service available for staff and customers to talk with about their stress and trauma. A bit later in the breakout session The Science of Resilience and the Practice of Self Care, CYW’s Research Director Monica Bucci told the audience: “There are healthy ways to express anger. And they are important in practicing self-care and setting boundaries — especially as we do the hard work of working with trauma.” Finally, Jim Sporleder, a trauma-informed school trainer and former high school principal in Washington State, wrapped up the talk: “As caregivers, we tend to take care of others first. I put myself on the back burner for too long.”
We honored the “Godfather of ACEs” on the 20th Anniversary of the ACEs Study: Dr. Vincent Felitti, co-author of the landmark 1998 ACEs study that led to this movement, discussed his discovery that patients’ intractable health problems may be clues to ACEs in earlier life. Obesity and other chronic conditions, he noted, may be “unconsciously attempted solutions to personal problems dating back to childhood, buried in time, and concealed by shame, by secrecy, and by social taboos against certain topics.”
To close out the conference, Dr. Burke Harris also reminded the audience that ACEs are not an inevitable setback for patients — or caregivers. “We cannot forget our fight or flight response was designed to give us an adaptive advantage,” she said. “It’s not about erasing our histories — it’s about understanding the risk to our health and mitigating those risks. Don’t forget: Superman was a refugee. X-man lived in a group home. If we can mitigate the harms and leverage our strengths, we can be joyful warriors.”
Check out photos from the conference below:
(Photo Credit: Eliot Mathat, 2018)
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