On a recent day in early March, Laura Lopez met a former patient of hers in the waiting room of Highland Hospital’s pediatric clinic in Oakland, CA. The patient had forgotten her Medi-Cal card and called Lopez asking for help. But in the brief conversation, Lopez, a family specialist with the DULCE program, learned about some dire changes in the patient’s life.
“Without me even asking, she shared with me that she had separated from her partner, that she needs to apply for food [assistance] and she doesn't know how she’s going to pay the rent,” says Lopez.
That Lopez’ former patient shared major fears with her about feeding and housing her family is an example of the trust that Lopez has spent months building with the patient. Trust is at the core of DULCE, an initiative of the Center for the Study of Social Policy that stands for Developmental Understanding and Legal Cooperation for Everyone. DULCE brings together the expertise of a community advocate, like Lopez, pediatricians, mental health providers and legal advocates to resolve a multitude of challenges that can beset a new parent already struggling to make ends meet. These challenges include food and housing shortages, parenting issues and a host of legal problems. In the absence of a relationship between patients and a family specialist, like Lopez, and a cross-sector team approach that DULCE offers, the needs of new parents in marginalized communities can develop into crises that put newborns at greater risk of toxic stress.
A pilot study of the DULCE program at Boston Medical Center, which was published in the journal Pediatrics in 2015, showed that compared to new parents who received their usual care from a pediatrician, families that worked with a DULCE team were able to get the support they need twice as fast. They were more likely to show up for visits with their doctors and have on-time immunizations and less likely than those receiving the usual care to end up in the emergency room.
Dr. Sam Singer, a pediatrician at the pediatric clinic at Highland Hospital, can attest to DULCE’s value. He says that prior to working with the program, clinic practitioners were more often in a reactive mode when dealing with the toxic stress and trauma of their families.
“When a family came in that was being evicted from their home,” he says, “or there was child abuse, or domestic violence, or maternal depression—all common crises that these families have—we would sort of panic and scramble and call a social worker and call Child Protective Services, and look into how we could get the family into a shelter. It was a flustered moment.”
When the opportunity to partner with DULCE arose in 2016, Singer says that Highland jumped at it. It’s one of nine clinics around the country that have been participating in a multi-year project to see if integrating a DULCE team can help prevent or mitigate toxic stress in newborns. The DULCE project at Highland has funding through June 2021. A DULCE team works with families from the time a baby is born through the first six months of its life.
University of Chicago researchers are evaluating the project. “So far the evidence is really showing promise in terms of the intermediate outcomes of families having their housing needs met, and getting employment and access to social resources,” says Dr. Julie McCrae, a senior researcher at the University of Chicago's Chapin Hall.
Family specialists like Lopez begin by asking clients a range of questions about violence in the home, if they’re experiencing depression, or if economic or legal problems are causing tension with their partners or interfering with their ability to provide emotional support to their babies—all of which can lead to adverse childhood experiences if unaddressed.
Adverse childhood experiences is a term that stems from the landmark Centers for Disease Control and Prevention/Kaiser Permanente Adverse Childhood Experiences Study (ACE Study) of 17,000 adults that found a relationship between 10 types of childhood traumas, such as any type of abuse or neglect, and adult-onset of chronic health conditions. Many other types of ACEs — including racism, bullying, a father being abused, and community violence — have been added to subsequent ACE surveys. (ACEs Science 101; Got Your ACE/Resilience Score?)
The ACE surveys — the epidemiology of childhood adversity — are 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. Subsequent research has linked toxic stress from ACEs with changes in children’s brain development and has shown how interventions, such as parenting education, family therapy and building resilience can offset the impact of toxic stress from ACEs.
The DULCE program at Highland brought to light a particular stressor that could have put the infants in the program squarely in the path of adversity, Singer says.
“In the first six months of doing the program, as we started to make referrals, we were noticing problems with Medicaid enrollment,” he explains. “Sometimes, we couldn't refer to a home-visiting program or maternal mental health [because the women weren’t covered. Mothers would show up and bring in their [hospital] bill. They’d have bills for $40,000 or $50,000. And for these families, those are just impossible numbers.”
Lopez was able to spend time talking with patients to learn where the fault line was in getting coverage. “They thought that since Highland is a [safety net] hospital, it was free and they didn’t have to do anything,” she says. To prevent families from being tripped up by sticker shock and/or the loss of services, she now guides them through all the necessary steps, paperwork and deadlines for applying for Medi-Cal, the state’s Medicaid program. “I tell them I’m going to be their Google Calendar, so they don’t miss deadlines.”
One thing that helped Lopez figure out how her patients could get Medi-Cal in a timely fashion was her weekly check-ins with staff members of the East Bay Community Law Center. They were particularly helpful with the problem of clients from another country who were in the process of applying for any kind of immigration remedy.
“New visa applicants are eligible for full scale Medi-Cal,” says Ingrid Murillo, a paralegal at the center. But apparently, some representatives at the county were erroneously telling them they weren’t. “So that discouraged families from taking further action, and they ended up with huge medical bills.” Lawyers from the center contacted Alameda County officials and were able to remedy the problem by submitting the pertinent documentation and getting retroactive Medi-Cal coverage for the DULCE patients who had been affected.
While DULCE helps these new parents navigate such problems, family specialists work hard to help them recognize their own strengths and build support systems, since many say they feel isolated.
“There’s one clinic that’s started an infant massage group, not only for DULCE families, but for all families,” says Patsy Hampton, who directs the DULCE project in her role as senior director and associate of EC-LINC at the Center for the Study of Social Policy. Hampton said that the group gives parents a chance to socialize and compare notes during the group meeting.
Lopez, too, says a major focus of her work is helping parents not to blame themselves for what they’re going through, as she did with the mom she met up with in the waiting room.
“I said to her: ‘You might not notice this right now, but please consider how much you have been doing. You went to court for the separation, you’re trying to figure out childcare and you’re working during the night. And in doing all of that you have to see how strong you are.’”