Improving health care for pregnant people with disabilities

November 09, 2022

A close-up of a stomach of a pregnant person in a wheelchair, with a brown filter

By Alix Hackett

Like most quantitative researchers, Professor Monika Mitra focuses her work around data, but in 2010, it was an absence of evidence that caught her attention. In her position at UMass Chan Medical School’s Center for Health Policy and Research, Mitra was working on a paper concerning violence against people with disabilities around the time of pregnancy. She began searching for existing research on preg­nancy and disabilities, but nothing came up.

“It was a void,” she recalls. “As disability researchers, especially at that time, we were used to blank slates, but I still couldn’t understand it.”

More than a decade later, Mitra has made it her mission to fill that void, shining a spotlight on the disparities many people with disabilities face in their journey to becoming parents. Today, as the Nancy Lurie Marks Associate Professor of Disability Policy and director of the Lurie Institute for Disability Policy at the Heller School, Mitra works to influence public policy, improve clinical practice, and mentor the next generation of disability researchers.

Overcoming stigma

Roughly 4.1 million people with disabilities in the United States are parents, and yet historically, researchers have ignored them in favor of studies focused on children with disabilities raised by non-disabled caregivers. Mitra attributes this to a persistent societal bias — tracing back to the eugenics movement of the late 19th and early 20th century — that assumes people with disabili­ties are either unable, or unfit, to become pregnant.

“It’s a very pejorative attitude toward disabled people that says they are not able to take care of other people because society is taking care of them,” she explains. “When children with disabil­ities get older, it’s as though they disappear from maternal and child health research.”

Nicole Lomerson has experienced this societal bias firsthand. In 2016, she gave birth to her daughter at 33 weeks and spent the next 40 days in the NICU. When a nurse told Lomerson, who has cerebral palsy and uses a wheelchair, that staff had met to discuss her daughter’s care without her presence, she was alarmed, but not surprised.

“I’m a health services researcher, so I was aware of the stigma and I knew how to speak to providers,” she says. “But I still found myself in the NICU with a tiny little baby and everyone was questioning my ability to take care of that baby.”

Lomerson confronted her social worker about the implicit bias she was facing, armed with printouts of data produced by Mitra’s team. Her advocacy was successful, but the trauma of the experience stayed with her. In spring 2022, she joined the Lurie Institute as a research associate.

Improving clinical care

Mitra first began researching pregnancy and perinatal health among women with disabilities in 2012. With no body of evidence to draw from, she and her colleagues at UMass looked for data anywhere they could find it, combing through hospital discharge records and using diagnostic codes to identify disabled patients. Their methods, while imperfect, yielded the first-ever window into the experiences of pregnant people with disabili­ties, and the view was disturbing.

Among women with intellectual, developmental, and mobility disabilities, and deaf and hard-of-hearing individuals, Mitra’s team found significant disparities both in pregnancy and birth outcomes and in maternal health. Disabled women were more likely to experience complications during birth, and to deliver babies with low birth weight. They were also admitted to the emergency room before and after delivery at a higher rate than non-disabled women.

When Mitra’s team began interviewing parents with disabilities about their health care experi­ences, more troubling data emerged. Deaf women reported going through birth without an inter­preter present, while some people with physical disabilities said they were never weighed over the course of their pregnancies. Many faced dismissive attitudes from clinicians, nurses, and office staff, who would sometimes talk over them during exams if a non-disabled person was present. Even in cases where birth went smoothly, parents reported returning home from the hospital to calls and visits from child welfare workers.

“If a disabled parent, even during pregnancy, speaks of their need for support, this is often seen as their inability to be a parent,” says Mitra. “As a result, they live with this fear that their child will be taken away from them.”

Today, Mitra and her team are focused on dissem­inating their research findings in a way that’s accessible to stakeholders — both clinicians and people with disabilities — so they can be used to improve clinical care. The team has interviewed many medical providers who say their training never covered the needs of disabled people, and who aren’t sure where to access scientific answers to patients’ questions.

“They have to utilize information either meant for non-disabled women, or do a patchwork mech­anism in order to fill the gap,” Mitra says. “As a result, disabled women have lower rates of health literacy because they’re not getting adequate information that is accessible and speaks to their needs.”

In addition to publishing information on its website, the Lurie Institute regularly hosts research-based training for clinical providers and staff. In June, Lomerson moderated a webinar for NICU staff to hear from parents with disabilities about their experiences. The response was over­whelming, with more than 130 providers logging in. Lomerson is now regularly in touch with clini­cians looking for tangible ways to improve care for patients with disabilities, and has been invited to speak at several hospitals.

Future impact

Evidence-based research, Mitra believes, is the key to impacting public policy. Since her entry into the field of disability research, she’s been a vocal advocate for increased public funding for studies related to pregnancy and disability, giving talks on the Lurie Institute’s findings, and working along­side public agencies like the National Institutes of Health to shape inclusive funding priorities. Over time, she’s seen the topic gain an increased presence in academic journals and at conferences, contributing to a growing body of research in the once-vacant field.

At Heller, Mitra has observed similar growth in the number of students involved with the Lurie Institute, whether as graduate research associ­ates or undergraduate fellows. Some have gone on to pursue careers involving disability rights, representing the next generation of researchers, policymakers, and practitioners fighting to correct the injustices Mitra’s team has exposed.

“They are passionate about this area and will make things happen when there’s a vacuum,” says Mitra. “Being able to mentor people who are inter­ested in this work, many of whom are disabled researchers themselves, is a core part of almost everything we do.”

The Lurie Institute continues to grow in both size and prominence, now encompassing several centers of excellence, including the National Center for Disability and Pregnancy Research; and the National Research Center for Parents With Disabilities. And Mitra’s team continues to push forward with groundbreaking research, recently receiving a four-year grant to study the obsta­cles facing disabled women of color during the perinatal period. Right now, they’re training peer researchers — women with disabilities who are Black or Latinx — to assist with every aspect of the project, from designing the study to recruiting participants.

“They are an integral part of this process, and I think that’s both innovative but also incredibly important,” says Mitra. “This work cannot and should not be done in an ivory tower setting. We work both inside and outside, with advocates and activists — that’s how we can effect change.”