An October study conducted by researchers of the University of Wisconsin-Madison and Boston University School of Public Health found that women with IDD in the Wisconsin Medicaid system experience greater risks for adverse pregnancy outcomes, adding to the growing list of research on pregnant women with IDD. The study was published in the journal Plos One.
The study found that women with a genetic condition have a higher risk of gestational diabetes and women with IDD have a higher risk of gestational hypertension and cesarean delivery compared to women without IDD. The direct cause of gestational diabetes is not clear. Other adverse pregnancy outcomes found in other research studies included.
Early laborPreterm birthPreeclampsia
Researchers point to a lack of access to care, stigma, and lack of proper medical training as some of the barriers pregnant women with IDD face, that can often lead to adverse outcomes.
Barriers For Women With IDD
The lack of adequate reproductive and sexual health care often puts women with IDD at greater risk for complications. Women with intellectual disabilities are less likely to receive prenatal care in the first trimester compared to women without IDD. This delays pregnancy recognition and the start of prenatal services such as ultrasounds.
Women with IDD’s access to health care is curbed by the lack of training for medical professionals to communicate with women with IDD as well. “[A woman with] autism, which is a communication disorder, may not be able to describe or convey, or even verbally tell a doctor how she’s feeling,” Eric Rubenstein, PhD, ScM, assistant professor of epidemiology at the Boston University School of Public Health, tells Verywell. “The doctor will need to know how to deal with this. And if they don’t know that, then they might miss signs and symptoms.”
According to Monika Mitra, PhD, MA, MSc, Nancy Lurie Marks associate professor of disability policy and director of the Lurie Institute of Disability Policy in Massachusetts, women with IDD might also have difficulty expressing signs of gestational diabetes to their family, caregivers, or healthcare providers, furthering hampering symptom recognition and delaying care.
In the study, researchers used the Wisconsin Medicaid population in order to examine if socioeconomic status was a factor leading to adverse birth outcomes for women with IDD. Although the study linked 284,496 deliveries to women with IDD with Medicaid claims, they can’t single out socioeconomic status as the only factor for adverse pregnancy outcomes. More research is needed to examine other social factors, like race, religion, and more to see how they impact pregnancy outcomes for women with IDD.
History of Stigmatization Against Women With IDD
“There is a really unfortunate history in this country surrounding reproductive rights for women with disabilities and intellectual developmental disabilities, more specifically, sterilization was allowed under law,” Rubenstein says.
Historically, women with IDD have had their reproductive rights taken away. In the early 1900s, American eugenists argued that the best way to protect society was through sterilization of people with intellectual disabilities. By 1963, over 60,000 were forcibly sterilized without consent.
Today, women with IDD experience stigma during doctor’s visits and often are labeled as unfit or unsuitable as parents. “One of the primary assumptions based on eugenic belief, [was that] women and people with intellectual disabilities should not and cannot parent," Mitra says. “As a result, what we see is a questioning about their capability of parenting.”
According to Mitra, people hold assumptions about women with IDD which is harmful when it is perpetuated in the doctor’s office. “People with disabilities are sexual beings," Mitra says. “They have a right to parent. So when a woman with an intellectual disability is at a prenatal care appointment, what we’ve seen is these attitudes manifesting.”
Health Disparities Among Women With IDD
To ensure that pregnancy and access to health care are equitable and inclusive for women with IDD, Mitra and Rubenstein suggest that training and medical education be provided on disability for healthcare professionals. In the training, providers should learn how to provide quality care and target and adapt materials for these patients, especially for folks with low literacy.
According to Rubenstein, it is also important to acknowledge that women with IDD want to have families, get pregnant, and have kids. Acknowledging this information can help people break down biases and preconceived perceptions about women with IDD. “If we start with that, then we can move forward with respect and dignity for all involved,” Rubenstein says.
As the number of pregnant women with IDD grows, medical professionals need to understand how to provide care and communicate with women with IDD. “This is only going to be more common for women with disabilities to have kids,” Rubenstein says. “So we need to be prepared to best serve and ensure optimal outcomes for this group.”
To Mitra, caring for the health and wellbeing of women with IDD is of the utmost importance in order to provide a more equitable healthcare experience. “As a society, we want to ensure that people have access to good quality care, they feel supported, they feel safe," Mitra says. “And so we want to, as a society, ensure that everybody has access to this and it’s not just for a few people.”
