“I feel like I’m losing all control.”
– A mother in recovery from substance use disorder (SUD) whose child was returned to her after being in foster care and is struggling with mental and behavioral challenges at home and at school
“You’re the only family I have left.”
– A mother in recovery from SUD who lost her mother—her rock—to COVID-19
“We don’t know what we would do without your support.”
– Grandparents who have stepped into the role of primary caregivers for their grandchildren after their daughter’s relapse
Statements like these are heard every day by Boston Medical Center’s SOFAR team as they carry out the mission behind the program’s acronym, “Supporting Our Families through Addiction and Recovery.” The words reflect the complexities of both coping with and being in recovery from substance use disorder (SUD)—a journey that often resembles a Chutes and Ladders game board with its starts, stops and turns—and stress how the program is a lifeline for its 249 patient families.
SOFAR’s Beginnings: Addressing an Unmet Need for New Mothers in Recovery
For expectant mothers with SUD, pregnancy is often a motivation for recovery. However, by the second half of a baby’s first year of life, the mother’s risk of opioid overdose is even higher than before pregnancy. It’s a compelling illustration of how the demands of new motherhood can put immense strain on a person’s ability to cope.
Given how often a baby needs to visit the doctor in their first year of life—the vaccination schedule alone calls for upwards of eight visits—it sparked an idea: Why not use those appointments to care for the mother as well? Using a dyadic mother/infant care model, SOFAR was established in 2017 as a medical home offering wraparound care for mothers in recovery and their children.
Accessible, Thoughtful Care for the Entire Family Unit
Initially, SOFAR aimed to reduce relapse in mothers of newborns. However, it became apparent that was only one tile in the mosaic of what recovery support looks like for families. “When we started SOFAR, we thought we were going to save everybody,” explains Sara Stulac, MD, MPH, co-director of SOFAR. “We’ve realized we’re actually going to accompany patients through the ups and downs of recovery. And that includes relapse.”
With a pivot toward welcoming any child—not just newborns—who has a parent with addiction or is in recovery, SOFAR has found its niche. Walking alongside every patient family is an integrated multidisciplinary team consisting of primary care pediatricians, a social worker, patient navigator, infectious diseases nurse practitioner and newly-joined developmental and behavioral pediatrician. Delivering care in a dignified manner and building trust make up the bedrock of their care approach.
“It is our responsibility that the entire practice is recovery-friendly,” explains Jill Baker, LICSW, SOFAR’s clinical social worker. “Families say to us all the time, ‘This is the first place where I haven’t felt judged.’ They’ll say, ‘You get it, you understand. You ask the right questions to get to know my recovery.’”
The comprehensive care model aims to leave no stone unturned when it comes to addressing patients’ unique needs and circumstances.
“Our byline is, ‘The child will thrive if the parents are well,’ says Eileen Costello, MD, chief of Ambulatory Pediatrics and co-director of the SOFAR clinic. “Even though we are pediatricians, a lot of our energy is spent on promoting the ongoing recovery of the parents. Making sure parents are connected to their own care is a really important part of our work. There’s a ton of coordination involved.”
The eagle-eyed team operates as a hub for the entire family unit. The coordination Costello speaks of is primarily led by Baker and Kristin Reed, SOFAR’s patient navigator. A considerable amount of their time is spent connecting and reconnecting families to services and resources, keeping track of appointments, facilitating communication with the family’s care team outside of SOFAR and working with patients’ schools. They even have a dedicated mobile phone so patients can get in touch anytime. “Our program wouldn’t be what it is without this phone,” Stulac adds. “Being able to reach us directly and talk to someone they know and trust changes everything.”
COVID-19 Pandemic Amplifies a New Need
Simply put, the COVID-19 pandemic has been detrimental to those with SUD. Stay-home orders, job loss and economic instability, isolation and stress have given rise to increases in overdoses and overdose deaths, disruptions in access to treatment and an increase in new use. “We know COVID in general has put stress on families and we know COVID in general has put stress on people with addiction,” Stulac notes. “When we put those together, it’s a whole lot of collateral damage for children.”
There have been clear indications of how the pandemic has chipped away at the already-fragile foundation of SOFAR’s families. On top of seeing more relapse and stress, there have been greater acute needs like food and housing. Addressing the latter has been next to impossible at times amidst community organizations closing their offices. “Closures have been a huge barrier since patients would normally obtain these services in person,” Reed says. “We’re filling gaps by providing items like donated diapers and food.”
Additionally, there have been an uptick in protective concerns. “We’ve been the only constant for a lot of our families this year,” notes Baker. “So many services turned virtual and it just didn’t work for a lot of the parents who are in recovery. I think their recovery and mental health have suffered because of that. We were the only people they were coming to see in person since the pandemic started. We played a huge role in supporting them.”
While there isn’t specific data on exactly how children in families with SUD are being impacted by COVID, it is safe to say the stress and strain experienced by parents and caregivers inevitably trickles down to the children. Prior to the pandemic, the SOFAR team had already been seeing manifestations of how SUD impacts its older pediatric patients, raising concerns around early intervention to prevent SUD later in life. The unprecedented blows brought on by the COVID-19 pandemic has added a layer of urgency to the matter.
Preventing the Next Generation of Substance Use Disorder
Between the clinic’s initial cohort of infant patients now reaching ages four and five and its expansion to include older children, SOFAR is particularly focused on answering the question, “How do we prevent these kids from becoming adults with addiction?”
Costello points out that a child who grows up in a family with substance use disorder is ten times more likely to develop SUD compared to a child who does not. She also adds one in five kids in BMC’s pediatric primary care clinic screened positive for a behavioral health condition, a key contributing factor to developing SUD.
Like so many of her colleagues, Costello has a plethora of anecdotes from parents with SUD who can easily pinpoint a turning point in their childhood that led them to initiating substance use. For one patient, it was trying cocaine for the first time with her mother at age 11. For another, substances were self-medication for ADHD. One shared, “I’ve been anxious my whole life. It’s what made me love heroin.”
There are already school-aged patients in the clinic with behavioral and mental health challenges that could precipitate a future substance use disorder. A common scenario is children being returned to their families after being in foster care.
“You’ve got a mom in early recovery with a newborn who may be a little fussier than standard [due to prenatal exposure to substances],” Stulac shares. “And now her six-year-old is back in her care and has all these feelings to deal with, like confusion and trauma from the separation. They are likely going to a new school and having behavioral and academic struggles. Mom is overwhelmed and in need of mental health services which are especially difficult to access during COVID.” (Given the dearth of mental health care right now, Baker will often step in to provide interim mental health support.)
For these cases and so many like them, the SOFAR team is working directly with schools and equipping parents with the tools to cope. The addition of developmental and behavioral pediatrician Mei Elansary, MD, to the team has been instrumental in the effort. Reed works in tandem with Elansary, obtaining releases so the clinic can be in direct communication with the school. She also acts as a liaison to ensure everyone is on the same page about the child’s needs. This includes advocating for getting patients access to certain services offered by the school. “A mom will call me and say, ‘This isn’t going right,’” Reed notes. “Because we are in communication with the schools and tuned into a child’s situation in real-time, we’re better able to provide guidance to her and step in if needed.”
Of course, this is just a starting point for a larger effort. “What we’ve learned is ‘big’ kids have bigger problems,” Stulac says. “We’re figuring out how to design better, more robust programming for the school-aged kids and the young adolescents in terms of mental health challenges, school challenges, ADHD [attention deficit hyperactive disorder] and trauma of past separation from parents.”
Underscoring these strides is a call for a paradigm shift. “Addiction is very much a pediatric issue,” Costello concludes. “We feel it is our responsibility to educate the pediatric workforce about getting in on the ground floor and helping kids develop distress tolerance and strategies for coping with anxiety, depression, ADHD or trauma—all the things that make kids pick up and use. We should also be helping parents have conversations with their kids about SUD and the signs and symptoms, just as they would with any other disease that runs in the family. Addiction can no longer be the elephant in the room.”