For once, being a biracial, low income, Medicaid patient didn’t work against Selina Martinez.
In 2015, two weeks after giving birth at a Manhattan hospital, Martinez arrived at Montefiore Medical Center in the Bronx where she was diagnosed with salmonella. During a month-long stay, hospital staff members learned times were tough for the new mom. She’d been getting psychiatric care since the stillbirth of her last child, her husband was recovering at home from pancreatic cancer treatment and a neighbor was caring for her infant son, Blake.
Montefiore soon diagnosed the baby as special needs and enrolled the family in its HealthySteps program, which provided wrap-around health and social services through a “care team” that coordinated with the baby’s pediatrician.
“When you have a resource like that, it opens up so many doors for families,” said Martinez. “A lot of people suffer in silence. If they have a special needs child, they keep the hurt and frustration inside of them.”
During the pandemic, such programs connecting at-risk new mothers and their babies with medical, mental health and social services – through home visits or teams of health workers– have become more critical, and harder to come by. When doctors’ offices closed, it magnified health care access challenges for low income people, especially those of color. Organizations including HealthySteps, which has 170 locations in 23 states, helped to fill the void, continuing to link patients with resources.
Navigating government, hospital and charity-covered health and social services for new parents can be mind numbingly complicated. Studies show the programs stop the cycle of domestic violence, child abuse and neglect that is more prevalent in, though hardly limited to, lower income families. They also boost parenting skills, reduce childhood obesity and improve babies’ lifelong health, academic and career achievement, research shows.
Still, Zero to Three’s HealthySteps and more than a dozen programs offering similar services, are paid for through a hodgepodge of public, private and philanthropic sources. Proponents say the pandemic proves these programs should be the baseline for early childhood care, not a an add-on available only in places where programs and funding exists.
“We do not need any more evidence that parents need support,” said Lori Poland, an abuse survivor who is executive director of the National Foundation to End Child Abuse and Neglect, known as ENDCAN. “These ought not be programs, they ought to be health benefits for prevention and well being.”
New data underscore the vulnerability of children in low-income homes. In March through May of this year, Medicaid and Children’s Health Insurance Program covered 44% fewer outpatient mental health visits compared to the same period in 2019, even when remote video or phone visits were included, according to the Centers for Medicare and Medicaid Services.
There also was a 22% drop in vaccinations in the first three months of the pandemic, and child screening for physical and cognitive development dropped from 68 visits per 1,000 children to a low of 28 per 1,000 in April, before rising slightly to 35 per 1,000 in May for these lower income children.
But such trends were not seen at the HealthySteps clinic at Montefiore. From March through August, 87% of children aged 19 to 36 months in the hospital’s pediatric primary care practices were up to date on vaccines, only a slight drop from the 89-90% for the same time period in 2019.
And although overall in-person visits dropped 23% from mid-March to early June, Montefiore made up the difference with virtual visits and an increase in physicals and other in-person appointments during the summer and early fall.
HealthySteps psychologist and National Director Rahil Briggs said specialists who were helping patients get food, formula, and diapers during the shutdown would remind them to keep up on vaccinations. They’d assure them pediatricians had all COVID precautions in place “to ameliorate the very understandable fears keeping many families away from the doctor.”
HealthySteps programs elsewhere had similar success during the COVID-19 lockdown. The program within Duke Children’s Primary Care health system in Durham, North Carolina, saw a small drop in vaccination adherence overall early in the pandemic – about 10% for children five and under – that was likely tied to a similar drop in physicals that’s largely been eliminated, officials there said.
Kristin Meola, a social worker and Duke HealthySteps specialist, called every one of her 200 families early in the pandemic, and said those and other HealthySteps children are “more up to date on well care and vaccines than I’ve ever seen them.”
“It has been unreal,” Meola said.
Experts say one reason children in HealthySteps programs see positive outcomes is that their mothers feel supported.The organization works to increase screening rates for maternal depression by building a trusting relationship “so that they will share their worries,” said Briggs.
“We know that women of color are less likely to access services and to share their mental health concerns, so if you’re not screening for it, not enough are going to seek out help,” she said. “There are two barriers being faced: the discrimination that comes with mental illness. The discrimination that comes from racism. Add them together and you start to see a real toll on parents’ ability to be the kind of parents they want to be.”
From homeless and on heroin to a healthy baby
The evolving science of trauma shows there’s a strong negative impact on the lifelong health of babies of pregnant and new mothers with untreated mental illness, substance use disorders or violent relationships. Like most everything else bad during the pandemic, COVID-19 made these conditions markedly worse and harder to solve.
Recognizing the increased vulnerability, Nurse-Family Partnership, another wrap-around services program. It distributed 3,800 iPhones with data plans at no cost to moms in 39 states through a deal with Verizon and another nonprofit.
The program helped moms trying to complete high school work and keep in touch with employers, said NFP spokeswoman Fran Benton, and also provided a way to communicate when dealing with domestic violence and “other critical health and safety situations.”
Kristin Haro could have been one of those emergency calls. For the first four months she was pregnant, Haro was living in a homeless tent community, “using drugs and alcohol obsessively,” and unaware she was carrying a child. When she detected symptoms, Haro stopped using, called her mother and went back to her hometown of Tucson with her family for treatment and prenatal care.
Arizona nonprofit Hands of Hope connected Haro with Casa de los Ninos and the Nurse-Family Partnership, which operates in 40 statesand has served 330,000 families since 1996. Dawn Kasarda became a personal nurse for Haro – and at least two dozen other moms through the program – but Haro describes them as “more like friends.”
They couldn’t be more different. At 49 and 6-foot-2, Kasarda is 20 years and 17 inches taller than the diminutive Haro and says she is far more “Mary Poppins” than the meticulous Haro.
More importantly, Haro, 29, who describes her downfall as getting “in with the wrong crowd” after moving to California to become a fashion stylist, said Kasarda is “not judgmental at all.”
Haro went to rehab for her addictions, which included heroin, Aug, 7, 2019, and was connected in her second trimester with Kasarda. Her daughter, Skyler-Ivy, was born Dec. 28, 2019, with no sign of addiction and is advanced in her developmental milestones.
Haro has been clean and sober for more than 400 days – every day since her first rehab trip, minus one. The day she relapsed she “reached out to Dawn because I knew she’d understand.” While she was in inpatient rehab, Kasarda visited Haro every week for her allotted hour.
Kate Siegrist, chief nursing officer at Nurse-Family Partnership, said it’s key for nurses to connect with at-risk mothers during their pregnancies to develop a “therapeutic relationship and trust.”
“It opens the door for the mom to feel safe to disclose what’s going on in her life,” said Siegrist. “They may be ready right away to be connected to services or you may have to build that trust first.”
Health care system: ‘Faulty structures on top of crumbling foundations’
Home-visiting programs such as Nurse-Family Partnership are currently waiting for the Senate to approve an additional $100 million for pandemic-related emergency supplies and technology to supplement a $400 million annual appropriation approved by Congress in 2018 for five years.
But Ben Miller, a psychologist and chief strategy officer for the nonprofit Well Being Trust, said the pandemic may be the perfect time to “clear the clutter to see how big a mess we really have” in the way health care is paid for and delivered.
“We have built faulty structures on top of crumbling foundations and every new policy, payment model, or program is built on top of things that have never really worked,” he said.
He’s in favor Medicaid coverage of proven home visiting programs, along with community health outreach for new parents and mental health and addiction treatment overall.
“Bringing care to people – wherever they are – should be the new norm,” said Miller.
Psychologist and ENDCAN Chairman Richard Krugman, an early researcher and proponent of Nurse-Family Partnership, said it’s “absurd that a basic health approach that prevents physical abuse and neglect has to be dependent on a federal appropriation every year.”
Krugman has spent the past 40 years trying to get government officials to take abuse and neglect more seriously. He and Poland, a child sexual abuse survivor he treated, launched the foundation they now run together in 2018 to increase research to bolster the case that child abuse and neglect is a public health problem.
He said home visiting programs are key to seeing the signs of problems firsthand.
“If you view child abuse as a health and mental health issue, the health system has to get involved and do more than be a mandated reporter,” said Krugman.
Former New York health commissioner Dr. Nirav Shah said efforts to overhaul the health care system requires a dramatic restructuring.
“If you invest in children’s health, you save money from health care delivery down the road,” said Shah, now a senior scholar at Stanford University’s Clinical Excellence Research Center. “Effective systems need to integrate care with daily life and the social determinants of health.”
‘I need to talk to my homegirls’
Now that COVID-19 restrictions have lifted some, Martinez travels from her Brooklyn apartment to the Bronx for medical and specialist appointments for herself and her son. She says the nurses and doctors near her home can’t relate to her. Martinez is Black and Latina; both Alba Cabral, the psychologist who leads her care team, and Claudia Bautista, her community health worker, are Latina, too.
“COVID has been a nightmare, especially for Blake, who’s not getting out as much. Remote learning doesn’t help him,” Martinez said of her 5-year-old, who has autism. “I need to talk to my homegirls.”
Martinez is resourceful in her own right, having secured an affordable apartment in a high-end apartment building. But she’s needed Bautista to help her process the racism she said she faces in her building and on the playground. That was especially true after a nanny sprayed disinfectant in the direction of her son.
And it was Bautista who showed up in person to investigate when Martinez struggled to get services at school for Blake. Before long, Montefiore called the hospital, the board of education got involved and the boy was transferred to another school for pre-kindergarten where he could be better served.
Communication is key, said Cabral.
‘“What it looks like when we are actually communicating with a patient is understanding,” she said, “It’s first listening and not assuming because they are a certain background, they are expected to act a certain way.”
Martinez said she used to ask herself, “Why does the health care system make it so difficult for someone like me?”
Five years later, she’s found an answer. “HealthySteps should be in every hospital,” she said.
Contributing: Lizeth Vela, Samantha Rosengard, and Kamyla Bullock of the Urban Health Media Project.