Child Life specialists empower kids in hospitals, disasters and now the pandemic

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Betsy Andersen

“I could see him trailing off and then he started crying,” says Andersen, who lives in Mundelein, Illinois. But before she swooped in, she heard Miss Eileen talking to him: “She was saying ‘Hey, I see you’re having some big emotions.” Speaking through the puppet, Miss Eileen then led Ezra through some breathing exercises that helped him calm down and focus.

Andersen, like parents all over the country during the pandemic, has been looking for ways to fill the void left for her son and his sister while they’re shuttered inside, isolated and dealing with all kinds of feelings they don’t understand.

“I’m not taking my kids to the store or anywhere. They’re really lonely,” says Andersen, who is trying to keep them active and engaged while doing contract work as a graphic designer. The lack of a fixed schedule is also tough for her son, who gets additional help online for various emotional and developmental issues, though not as much as he received in person at school.

In fact, the facilitators on the Zoom call are particularly adept at working with children and families around times of profound traumatic stress. They’re trained in a specialty known as Child Life, which works with families on the grief, fear, and anxiety that children often experience while receiving medical care for serious illnesses or injuries. While Child Life specialists typically work in hospitals, some are pivoting into other areas and are now applying their skills to the fallout from the pandemic. Some have also been coming up with suggestions for ways to help children process feelings about frightful events captured in the news, such as the killing of George Floyd.

Among those who have branched out is Miss Eileen, aka Eileen Esposito, a Child Life specialist in Tampa, Florida, who helped develop the group sessions that Andersen’s children attended, called Coping through Connection. Esposito and her colleagues are part of an organization that had already stepped outside traditional medical settings, the Child Life Disaster Relieforganization (CLDR), which operates virtually and includes 18 contract Child life specialists around the country.

The group was formed in 2016 to help mitigate trauma in children who have experienced disasters and crises. It also partners with organizations who are deployed to disasters, such as Children’s Disaster Services. It worked with children who lived through the devastating massacre at a country-and-western concert in Las Vegas in 2017, and with children and families who survived Hurricane Dorian in the Bahamas in 2019 and Hurricane Maria in Puerto Rico in 2017.

Much of their work involves child-led play, says Katie Nees, one of CLDR’s founders who lives in Cincinnati, Ohio. She recalls an experience working with children in a homeless shelter in Moore, Oklahoma, in 2013, which predates CLDR, but is instructive. Using cardboard boxes, magic markers, crayons and tape, the kids in Oklahoma built their own houses and networked with each other.

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Katie Nees

“They’d say things like, ‘You’re my neighbor, you’re my neighbor, if anything happens, we’ll stick together,’” says Nees. “After a couple days, they had a moment of high energy and ran around making lots of noise. They ended up ripping the houses to shreds,” she says, adding that the scene mirrored the reality of what was visible just outside.

After the demolition, the kids asked for time to sit and be calm, and Nees brought them snacks and drinks.

“We all sat together and [absorbed this feeling] of safety of the moment,” she recalls. “Watching them play out that entire situation the way they did it as a collaborative effort and then at the end just making time for safety and calm, was incredible. I’ve never seen anything like it.” (Here are some resources from CLDR.)

A turning point for Nees, who has worked in hospitals as a Child Life specialist since 2010, was when she came to understand how clearly the work of Child Life specialists was grounded in ACEs science.

Lesson learned integrating ACEs science into health clinics: Staff first, THEN patients

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Dr. Omoniyi Omotoso

About two years ago, a team from LifeLong Medical Clinics jumped at the opportunity to integrate practices based on adverse childhood experiences   when it joined a two-year learning collaborative known as the Resilient Beginnings Collaborative (RBC). RBC began in 2018 and includes seven safety-net organizations in the San Francisco Bay Area. (Here’s a link to a report about the RBC.)

To join the RBC, LifeLong Clinics — which has  14 primary care clinics in Alameda, Contra Costa and Marin Counties — and the other collaborative teams had to agree to introduce all staff members to the science of childhood adversity and trauma-informed practices. LifeLong went full steam ahead with a 2.5-hour introductory training for more than 100 employees who work at its clinics that serve pediatric patients. Trauma Transformed, a program of the East Bay Agency for Children in Oakland, CA, did the training in October and November 2018.

LifeLong Clinics’ decision to move forward on integrating ACEs science and trauma-informed practices into its clinics is important particularly in California where a state policy has made childhood adversity a front and center issue. On Jan. 1, 2020, as an incentive to doctors who serve Californians in the state’s Medicaid program, the state began offering supplemental payments of $29 to doctors for screening the estimated 12 million pediatric and adult patients for adverse childhood experiences (ACEs).

ACEs comes from the groundbreaking Adverse Childhood Experience Study (ACE Study), first published in 1998 and comprising more than 70 research papers published over the following 15 years. The research is based on a survey of more than 17,000 adults and was led by Drs. Robert Anda and Vincent Felitti. The study linked 10 types of childhood adversity — such as living with a parent who is mentally ill, has abused alcohol or is emotionally abusive — to the adult onset of chronic disease, mental illness, violence and being a victim of violence. Many other types of ACEs — including racism, bullying, a father being abused, and community violence — have been added to subsequent ACE surveys. (ACEs Science 101Got Your ACE/Resilience Score?)

The ACE surveys — the epidemiology of childhood adversity — is one of five parts of ACEs science, which also includes how toxic stress from ACEs affects children’s brains, the short- and long-term health effects of toxic stress, the epigenetics of toxic stress (how it’s passed on from generation to generation), and research on resilience, which includes how individuals, organizations, systems and communities can integrate ACEs science to solve our most intractable problems.

After it trained employees in 2018, brainstorming around workflow was provided for staff at the LifeLong Howard Daniel Health Center in Oakland, CA, in February 2019, where LifeLong plans to pilot ACEs screening in newborns to five-year-olds, said Dr. Omoniyi Omotoso, the pediatric lead at LifeLong Clinics, who led the brainstorming about workflow and additional training.

Four months into that training, in June, Omotoso showed staff the ACEs questionnaire and asked them how they thought patients would feel about it.

And that’s when Omotoso realized that they had to put on the brakes. “A lot of the staff were uncomfortable because they themselves had similar instances that they personally were triggered by as they read the [ACE] questions themselves,” said Omotoso, who splits his clinical time between LifeLong Howard Daniel Health Center and LifeLong William Jenkins Health Center. He said that LifeLong will be using the de-identified PEARLS ACE screener for its pediatric population, which asks those surveyed to write on the form the number of ACEs that apply to them. (Here’s a link to ACEs Aware, where you’ll find out more information about PEARLS, the only pediatric ACEs screener for which California providers can be reimbursed.)

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San Mateo (CA) launches county initiative to tackle ACEs and build resilience

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Group ice-breaker exercise

When you’re working with people who’ve had a lot of childhood and adult adversity, it’s hard for you to believe that anyone else can have a bad day, says Laura van Dernoot Lipsky. “Your neighbor or your best friend says: ‘I’ve had a bad day.’ And you think, ‘Oh, I’m sorry you had a bad day; were you sex trafficked today? No, you were not!’”

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Laura van Dernoot Lipsky

Van Dernoot Lipsky, the author of Trauma Stewardship: An Everyday Guide to Caring for Yourself While Caring for Others, was driving home one of several points of how working in a job that serves severely traumatized people can harm people who help them, too.

Screening for Childhood Trauma

Dr. Ken Epstein has been in the social services sector for nearly four decades and has witnessed firsthand the long-term effects of trauma. As both the son and father of fellow social workers, the work runs in his blood. He has been frontline staff at a residential facility for youth with severe mental and emotional challenges, a therapist, a family and couples therapy professor and director of the Child, Youth and Family System of Care for the City of San Francisco’s Department of Public Health. Now, he’s helping Bay Area health clinics screen for and address childhood trauma through the Resilient Beginnings Collaborative (RBC), led by Center for Care Innovations (CCI) and made possible by Genentech.

Trauma is pervasive. Studies show that one in seven children in California experience trauma by age five (Children Now, 2018), and research links adverse childhood experiences (ACEs) – incidences of abuse or neglect, household dysfunction, and community violence – to an increased likelihood of negative health outcomes. In youth, trauma can cause behavioral issues, asthma, and infections; as adults, those same individuals are at greater risk of heart, lung, and autoimmune disease, obesity, mood disorders, and substance use disorders. This is magnified when you include income disparities and the impact of systemic and structural inequities.

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Tributes honor the life of Rep. Elijah Cummings of Baltimore

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Image projected on a building of a younger Rep. Cummings taken on a street in his native Baltimore. From an unknown source, projected images and messages appear on the side of a building near my house in the Mt. Pleasant neighborhood of Washington, DC.

When the news alert came across my cell phone on Thursday morning that Elijah Cummings had died, I felt overwhelming sadness for the loss of a powerful, eloquent, and soulful human who understood trauma in his bones.  An immediate second thought was he died too soon as do many other African Americans whose lifespan is shorter by years than white people’s. Then I wondered how we can honor his legacy by building on what he started dramatically in the House Oversight and Reform Committee with the first hearing of its kind on July 11 this year (Click here for a story on the hearing in ACEs Connection).

Just the day before the news of Cummings’ death, I had read an email from Dan Press who leads the advocacy work for the Campaign for Trauma-Informed Policy and Practice (CTIPP) updating me and other members of the CTIPP Board about the latest thinking of Cummings and his staff about the advisability of moving ahead at this time with comprehensive legislation on trauma.  The strategy was fluid but it was clear that Cummings was engaged and focused on the what, when, and how of promising next steps with legislation.

Iowa ACEs360: Catalyzing a Movement

Iowa ACEs Policy Coalition joins Iowa Gov. Kim Reynolds as she signs a “Resilient Iowa” proclamation in 2018. Photo courtesy of Lisa Cushatt.

For years, advocates for a statewide children’s mental health system would stand before Iowa legislators and speak passionately about their own particular concerns.

Psychiatrists pointed to a need for more inpatient beds for youth with severe mental illness. Pediatricians said the answer was better screening to identify mental health issues in children from birth to age five. Educators wanted more school-based mental health services, and advocates from grassroots groups like the National Alliance on Mental Illness (NAMI) asked for increased crisis services.

“We were all saying, ‘Throw money at this issue,’” says Chaney Yeast, co-chair of the policy coalition of Central Iowa ACEs 360, a multi-sector network formed in 2012. “That confused legislators; they felt it was this black hole, and they didn’t act.”

This year—thanks in part to connections forged by Iowa ACEs 360—advocates for a comprehensive child behavioral health system told a single story: Children whose mental health needs are met will be more likely to graduate, be employed and become productive members of the community. Current mental health services for children are fragmented and inconsistent. We know what it would take to fix that.

Group after group that testified before Iowa legislative committee members—officials from the sheriff’s department, mental health providers, community advocates, child welfare workers—drummed home talking points that the ACEs policy coalition had developed with a public policy messaging and research firm.

“That common messaging hit home. We were all on the same page,” says Yeast. The bill—which requires Iowa counties to implement a coordinated array of preventive, diagnostic and treatment services for children, and calls for parents of children with mental health issues to have a voice in designing those services—passed the legislature in April and was signed by the state’s governor in May.

“That was a huge win in terms of collaboration,” says Yeast. It was also a clear example of the power that cross-sector networks can wield when members move beyond their own silos to support a shared goal. Such work is not easy—“It takes a lot of time and effort to continually nurture those relationships and connections,” says Yeast—but it is essential to making long-term, systemic change.

That’s been the ambition of Iowa ACEs 360 since its start, when a small group of stakeholders—in public health, mental health, family support and community advocacy—gathered, with the support of the Mid-Iowa Health Foundation (MIHF), to discuss the original CDC-Kaiser Permanente ACE Study and how their work needed to change in response.

That group decided on two priorities: collect Iowa ACE data and spread awareness of the ACE Study, so others could be galvanized by its findings on the lifelong, corrosive effects of early childhood adversity.

After Rob Anda, the co-investigator of the 1998 ACE Study, did a presentation about the ACE Study to a small group of key stakeholders, an early step was to include the ACE module in Iowa’s Behavioral Risk Factor Surveillance System (BRFSS). Following an invitation-only summit in 2011 that featured a follow-up with Anda, he and Laura Porter, a nationally known expert on ACEs and population health, spoke to 800 people at the 2012 Iowa ACE Summit.

Suzanne Mineck, president of MIHF and one of the original committee members who launched ACEs 360, says “water cooler conversations” in the weeks following Anda’s visits that gave the work momentum. “We all had the privilege of learning about compelling research, but it was the lingering impact, both on those in decision-making places and those on the front lines, that was as much of an ‘aha.’”

As the coalition grew, hosting quarterly learning circles, developing work groups and, in 2014, acquiring a part-time program manager, it became a place where people from various sectors—juvenile justice, child welfare, health care and education—could learn together.

“It created a culture where there wasn’t a singular response…a culture of transparency, humility, honoring and supporting risk-taking,” says Mineck. “Many felt they were learning things for the first time together.”

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CA announces robust perinatal depression prevention for Medi-Cal recipients

Melinda Coates experienced a tumultuous pregnancy. “I was really mentally upset literally from day one (of the pregnancy),” she says. (Melinda Coates is a pseudonym. To protect her and her children’s privacy and safety, we are not using her real name.)

Coates had hoped to get counseling last October, when she was seven months pregnant. That’s when she enrolled in the state’s Medi-Cal program, shortly after she and her abusive husband moved to California, “but nobody was able to get me in that quickly,” she says. “If I had gotten the help that I needed with my mental state, I may not have stayed in my abusive marriage as long,” she says.

Six weeks after her son’s birth she had one session with a counselor who prescribed an antidepressant. “I was supposed to go back, and I needed to reschedule, but I never heard from her again,” says Coates, who has been living in a domestic violence shelter since the end of June with her eight-month-old son and three-year-old daughter. She is currently separated and filing for a divorce from her husband.

A new policy in California that went into effect in July now makes it possible for pregnant women like Coates to get the counseling they need, according to a recently-released MediCal bulletin.

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The myth of motive in mass shootings

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Photo: Vernon Bryant, Dallas Morning News

Almost the first thing you hear out of the mouths of police after a mass shooting is: “We’re looking for a motive.”

In Gilroy, CA, the FBI is investigating the shooting at the Gilroy Garlic Festival as domestic terrorism. In El Paso, TX, police are describing the shooting as a possible hate crime and act of domestic terrorism, and focusing on the manifesto written by the shooter. Police in Dayton, OH, are still looking for a motive for why 24-year-old Connor Betts murdered nine people in 30 seconds.

But if we want to prevent shootings, asking about motive will just get you a useless answer to the wrong question. Police might feel as if they have an explanation for why 19-year-old Santino William Legan murdered three people, and why 21-year-old Patrick Crusius murdered 22 people. But motives don’t explain the roots of why those three young men, or any other mass shooters or bombers, foreign or domestic, start their journey as innocent babies and end up on a road to killing people. And in those roots, are our solutions.

If you use the lens of the science of adverse childhood experiences, the answer reveals itself, and usually pretty quickly.

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Personal stories from witnesses, U.S. representatives provided an emotional wallop to House Oversight and Reform Committee hearing on childhood trauma

William Kellibrew's grandmother receives standing ovation

Room erupts in applause for the grandmother of witness William Kellibrew during July 11 House Oversight and Reform Committee hearing.

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The power of personal stories from witnesses and committee members fueled the July 11 hearing on childhood trauma in the House Oversight and Reform Committee* throughout the nearly four hours of often emotional and searing testimony and member questions and statements (Click here for 3:47 hour video). The hearing was organized into a two panels—testimony from survivors followed by statements from experts—but personal experiences relayed by witnesses (including the experts) and the members of Congress blurred the lines of traditional roles.

Chairman Cummings
Chairman Elijah Cummings
Ranking Committee member Jim Jordan (R-OH)
Ranking member Jim Jordon (OH)

Chairman Elijah Cummings (D-MD) set the tone early in the hearing by recalling his childhood experience of being in special education from kindergarten to sixth grade, and being told he would “never be able to read or write.”  Still, he “ended up a Phi Beta Kappa and a lawyer.”

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Talking ACEs and building resilience in prison

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They’re the forgotten, the 2.3 million people in US prisons. The overwhelming majority of them have experienced significant childhood trauma. Before you click out of here, this isn’t another boo-hoo story, as some of you might describe it, about the dismal state of our corrections system, for inmates and guards alike. (Oh, yes, it is profoundly dismal.) This is a story about how one tiny part of it isn’t so dismal, and actually addresses head-on the fact that most (91 percent) of the approximately 2.3 million prisoners will finish their sentences and go home. To your neighborhood. So….wouldn’t you want the prisons to help these guys and gals so that they, and by definition, we, come out happier and more well-adjusted than when they went in?

Well, yea-uh.

Ok. Just in case you glossed over it, let’s go back to that sentence about childhood trauma. It is precisely why the 2,300 inmates at Washington State Penitentiary in Walla Walla, Wash., ended up there. Over the last 20 years some profound, intense research revealed that people who have a lot of childhood adversity have seven times the risk of becoming an alcoholic, 12 times the risk of attempted suicide, twice the risk of cancer and heart attacks. They’re more violent, more likely to be victims of violence, have more broken bones, more marriages, and use prescription drugs more often than people who have no childhood adversity. And those are just the few drops in the bucket of how childhood trauma affects people’s lives.

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