'I can’t wait.' Missouri moms are facing long waitlists and high stakes for mental health care
In Missouri, maternal mental health conditions are the No. 1 cause of pregnancy-related deaths. According to a state-commissioned review, all mental health-related maternal deaths were deemed preventable. But Missouri's government has largely failed to respond to the crisis.
Geornesha Clayton is a social worker. So when she was undergoing a difficult pregnancy in the midst of the coronavirus pandemic, with morning sickness so severe it put her job at risk, she understood that problems could carry over after she gave birth.
Her delivery was also rocky. Clayton, who lives in Kansas City, ended up needing an emergency cesarean section and didn’t get to see her baby for nearly five hours after she was born.
“I didn’t get to hold or nurse my daughter,” Clayton said. “That was rough. So I’m not surprised at all that I had postpartum anxiety, depression, rage and intrusive thoughts.”
Many new parents face similar crises. In Missouri, a state-commissioned review board found that mental health conditions were the leading cause of pregnancy-related deaths from 2017 to 2019 — and that 100% of deaths related to maternal mental health issues were preventable.
But Missouri has largely failed to respond to the crisis. Mental Health America, a nonprofit, ranked the state 41st for its access to mental health care in 2022.
Despite an $8 billion revenue surplus this year, Republican Gov. Mike Parson recently vetoed a number of budget items that would have boosted mental health care access, including a $7 million increase for behavioral health crisis centers.
New parents who face substance use issues, which contributed to 32.7% of pregnancy-related deaths from 2017 to 2019, also struggle to access care. But Parson also vetoed a budget increase for a state and federal grant providing low-cost addiction treatment in Missouri.
Clayton understood that mental health risks often follow a stressful pregnancy and delivery. But she didn’t know how difficult it would be to address the warning signs herself.
“I come from a social work background. I’m very familiar with mental health and knowing signs of not being okay,” she said. “I knew I wasn’t okay. But I wasn’t going to admit that I wasn’t okay.”
Clayton’s baby experienced colic, acid reflux and a dairy allergy. She cried for hours in the evenings. Clayton felt her stress levels climbing.
In March of 2021, she finally turned to the University of Kansas Hospital system, where she had delivered her baby, and sought help. The waitlist was more than a year long.
“Like, what am I supposed to do until May 2022?” Clayton said. She was frightened by some of the thoughts that found their way into her head.
“I was one intrusive thought away from being on KCTV5,” she said. “I can’t wait.”
The difficulties of accessing maternal mental health care in Missouri
When Clayton realized that she needed help but knew she couldn’t wait for an appointment through her hospital system, she turned to a resource packet she’d received when leaving the hospital. That’s where she found Strength Through Story, a postpartum support group in Kansas City.
Clayton reached out to Kim Hawley, the group’s founder, and started attending online support groups during the pandemic. Those sessions and medication, she said, changed how she viewed her postpartum mood disorders.
Hawley is acutely aware of the need for comprehensive mental health care in Missouri, especially for those in the perinatal period, which runs from the time someone gets pregnant until a year after the baby is born.
“A lot of times, it might be that doctors don’t have the time, that providers don’t have the time,” Hawley said. “It’s a system problem. The system is failing parents. I don’t believe that parents are getting the education and the support that they need. I think that providers are being failed by the system as well.”
Clayton’s social worker background and the fact that she had health insurance through her job helped her navigate difficult channels. But others aren’t as fortunate. Black women with Medicaid coverage or no insurance are especially at risk.
According to the state’s Pregnancy Associated Mortality Review (PAMR) board, Black women, who are overrepresented in Missouri’s Medicaid population, accounted for over 50% of pregnancy-related deaths in Missouri.
Shavanna Spratt is a certified doula and community organizer at Generate Health in St. Louis, a group focused on racial equality in birth outcomes. Like other Black Americans who have experienced racism in the health care system, she wants to erase the stigma around talking about mental health and address the problem of racism in health care.
“I’ve had my own story of a traumatic birth experience. I’ve had my own experiences with racism in the health-care culture of St. Louis,” she said.
Spratt was recently appointed to the Missouri Women’s Health Council and has a podcast where she highlights the work of Black mental health providers.
“We focus on Black mental health, lifting resources and connecting people to mental health professionals who look like us, because they’re not highlighted enough,” she said.
Spratt added: “The community that I serve, specifically the Black community, we don’t necessarily even have awareness of the mental health services. There’s stigma sometimes around that as well. We want safe spaces. And we don’t always have safe spaces.”
Black people are more likely to be affected by mental health problems. A data analysisconducted by the City of St. Louis found that in 2021, Black people in the county received psychiatric care at a rate of 40 per 1,000 people, compared to white people at a rate of 15 in 1,000.
But finding the right care early enough to make a difference is difficult.
“All of these larger organizations that are accessible to lower income parents, they have a waitlist,” Hawley said. “So parents are reaching out and are not able to get the support that they need.”
Perinatal mood and anxiety disorders are the number one complication in childbirth, Hawley said. According to the PAMR board, more than 14,000 Missouri families are impacted every year by maternal mental health conditions, with an estimated cost of $467 million if untreated.
“It makes all the difference in the world to have these resources,” Hawley said. “A lot of these things aren’t accessible to rural populations, or populations who don’t have those kinds of funds. They’re just lost in the shuffle.”
Missouri’s access problem applies to perinatal substance use treatment
The shortage of maternal mental health treatment opportunities is mirrored by limited resources in Missouri for treating substance use disorders.
According to the state’s PAMR report, use of substances such as opiates, alcohol and prescription medications was a contributing factor in 32.7% of pregnancy-related deaths in Missouri. In two-thirds of those cases, mental health conditions other than SUD were also contributing factors.
Missouri lawmakers in 2018 passed a small expansion of Medicaid for Missouri moms who struggle with substance use disorder. The program has since been put on pause by the state Department of Health and Senior Services. The department’s director wrote in a letter to the U.S. Centers for Medicare and Medicaid Services that expansion of Medicaid eligibility in Missouri would cover many of the women who would benefit from the smaller program.
More recently, the state agency has also pointed to the legislature’s passage of an extension of Medicaid to pregnant people for up to a year after they give birth as a reason to continue the pause. Gov. Parson signed the billinto law on July 6.
But recent moves to make more parents eligible under Medicaid for treatment doesn’t guarantee they’ll find a place that can help them.
Independence, Missouri, is home to an inpatient women’s treatment program housed at Comprehensive Mental Health, part of the Burrell Center. It is one of few providers in the state that treats pregnant people or allows parents to bring their children with them for inpatient treatment.
The building only has space for 14 women and demand is high, said Jenny Duncan, Comprehensive Mental Health’s director of residential services. Pregnant people are considered a priority population in Missouri, so if there is a waitlist to access care, they are bumped to the front of the line.
Around 90% of the people who pursue treatment in her programs also struggle with some form of mental illness, Duncan said.
“When a client comes in, we treat the whole person,” Duncan said. “So we not only provide substance use treatment, but we provide mental health treatment as well. Our staff is very well-rounded, educated and trained to be able to provide that trauma support. That’s really the core of a lot of issues that women particularly are facing when they’re pregnant.”
According to the review of pregnancy-related deaths, among those who had SUD as a contributing factor to their death, 33% had experienced domestic violence, 39% had been unemployed and 50% had involvement with Child Protective Services.
It can be scary for pregnant women who want to pursue treatment to ask for help. Fears of repercussions because of one’s SUD keeps many pregnant people out of their regular doctor’s appointments during the perinatal period, Duncan said.
“They don’t know how to attain care, they don’t know where to go,” she said.“They are scared, because if they are currently using and they go get OB care, they don’t know what’s going to happen, or if somebody’s going to report them.”
A state report found that in 2016, 795 pregnant women in Missouri received treatment for a substance use disorder. According to the report, research has shown that pregnant people who receive substance use treatment are more likely to receive prenatal care, to reduce or abstain from use of drugs and alcohol and to have better perinatal outcomes.
Other problems for those with SUDs include struggling to find stable housing and often being underinsured, according to Duncan. But the biggest barrier she sees in terms of access to care comes down to staffing.
According to the Kaiser Family Foundation, only 12.2% of Missouri’s need for mental health care providers has been met, compared with 27.2% nationally.
“Finding the people passionate enough to work in this field has been difficult,” Duncan said. “Therefore, it keeps us from growing our programs. You have to have a true passion to work with this population. This is a job that you come to and you can experience every single emotion every day.”
Resource sharing could help with mental health care access, staffing problems
In the absence of trained staffers, and with insufficient state funds to boost the workforce, treatment providers are turning to those who understand the situation the best — patients.
At her Independence location, Duncan has hired two peer support staffers who have been through treatment and are now training to help support others.
“Peer support is somewhat new. And it’s really booming,” Duncan said. “It’s important for clients that walk in our door to know they’re not alone, and that somebody else has experienced what they’ve experienced.”
The same concept can be applied to mental health, she added.
“It’s just really it’s the stigma attached to the moms,” she said. “We need to be able to protect these moms; they can’t be scared to get treatment.”
Along with her other roles, Hawley is the Missouri chapter lead of Postpartum Support International, a group that connects families across the state with resources in their area. Hawley considers the role to be peer support, and wants Kansas Citians to be aware of the resources available to them.
“We are here for peer support. That’s what we do,” she said. “We’re here to talk with them about what they’re going through, and then also get them connected to resources that accept their insurance, that actually have spots available.”
As a new mother experiencing maternal mental health issues, Geornesha Clayton said she found the support system she needed in Hawley’s Kansas City group, Strength Through Story.
“I needed that kinship, the family that I really found was from Strength Through Story,” she said. “Knowing that I wasn’t alone … Honestly, if it weren’t for that and medication, I’m not sure me or my daughter would still be here.”