Pregnant women with intellectual or developmental disabilities are more at risk for pregnancy-related health issues, including potentially fatal complications. Dr. Craig Escudé, President of IntellectAbility, explains why better training for clinicians and support givers helps ensure more positive outcomes, including receiving the same level of care as everybody else.

Most people with intellectual or developmental disabilities (IDD) want what everyone else does—the ability to live life to its fullest. In many cases, this includes starting a family. But when a woman or birthing person with IDD gets pregnant, they often have trouble accessing and receiving appropriate prenatal services to help ensure their health and the health of their child. Additionally, many of these people have comorbidities that may make prenatal care more complex. Dr. Craig Escudé, President of IntellectAbility, says, “The fact is, women with IDD can and do become pregnant. We need to focus more on proper training, education, and understanding of this unique population to help ensure the best outcomes possible for both mother and child.”

A recent study completed in Wisconsin found that pregnant folks with IDD were at higher risk for a variety of pregnancy-related issues, such as:⁽¹⁾

• Delivery via cesarean section
• Gestational diabetes
• Gestational high blood pressure (hypertension).

Other research shows these individuals are also at increased risk for early labor, preterm birth, and preeclampsia, a potentially deadly pregnancy complication.⁽²⁾ Compared to those without IDD, women and birthing people with IDD are also less likely to have access to prenatal care in the first trimester and to breastfeed. They are about 3% more likely to have infants of low birth weight.⁽³⁾

The prenatal experience of birthing people with IDD often differs greatly compared to those without IDD. A study examining women with IDD in Canada found that these individuals with IDD:⁽⁴⁾

• Are more likely to be financially unstable
• May have a history of sexual, physical, or verbal abuse from partners or other family members
• Often have poor social support

Person-centered care can make a tremendous difference to pregnant women with IDD. Recognizing that women and birthing people are unique individuals with their own desires, wishes, and goals is important to providing the best care possible.

Bias Training Can Improve Outcomes for Women and Babies

Better care starts when people who provide services to pregnant women and birthing people with IDD recognize their intrinsic worth. Regardless of an intellectual or developmental disability, these people are individuals deserving of compassionate care throughout their pregnancy. But beyond this simple recognition, clinicians can take steps to improve care that include:

• Connecting pregnant folks with IDD to community-based resources for additional support
• Developing a personal relationship based on common interests
• Learning how to recognize alternative communication methods pregnant folks with IDD may use
• Shifting attitudes and perceptions to make it more socially acceptable to genuinely care about a person with IDD.

Family members and other supporters also play a role in providing better prenatal care. Supporters should help pregnant people with IDD understand pregnancy and the birth process. They can help by advocating for the pregnant person with IDD so that they receive the best prenatal care possible. Karen Green McGowan, Founder of IntellectAbility, says, “Proper training is the key to helping pregnant women with IDD. And when you have proper training, you’re better able to shift the mindset that these women aren’t valuable.”

There are certainly additional medical concerns when a woman or birthing person with IDD becomes pregnant. But proper education and training is the best way for clinicians to prepare to deal with these challenges. According to McGowan and Escudé, there are positive actions already occurring, such as several medical and nursing schools adopting more IDD-centric courses and training. There is more to be done, but it is a good start, Escudé affirms.

Dr. Escudé says, “Everyone wants to live a life they love to the fullest degree possible. And when it comes to pregnancy, the same level of prenatal care should be accessible and available to anyone, including women and birthing people with IDD. We help providers and supporters learn more so they can better practice a person-centered approach to prenatal care for these women.”

Sources

1. Rubenstein, Eric, et al. “Pregnancy Complications and Maternal Birth Outcomes in Women with Intellectual and Developmental Disabilities in Wisconsin Medicaid.” PLOS ONE, vol. 15, no. 10, 2020, doi:10.1371/journal.pone.0241298.
2. Hui, Kayla. “Women with Disabilities at Risk for Adverse Pregnancy Outcomes, Study Finds.” Verywell Health, 2 Dec. 2020, verywellhealth.com/learning-developmental-disability-pregnancy-risks-5089422.
3. “Providing Perinatal Care for Women with Developmental Disabilities.” University of Cincinnati Center for Excellence in Developmental Disabilities, 2021, ucucedd.org/wp-content/uploads/2018/10/Providing-Prenatal-Care-for-Women-with-Developmental-Disabilities_UCCEDD.pdf.
4. Xie, Elaine, and Meg Gemmill. “Exploring the Prenatal Experience of Women with Intellectual and DEVELOPMENTAL Disabilities: In a Southeastern Ontario Family Health Team.” Canadian Family Physician Medecin De Famille Canadien, College of Family Physicians of Canada, Apr. 2018, ncbi.nlm.nih.gov/pmc/articles/PMC5906775/.

IntellectAbility provides tools and training to agencies, governmental entities and supporters of people with intellectual and developmental disabilities to foster early recognition and mitigation of health risks thereby improving health and wellness. One such tool is the Health Risk Screening Tool (HRST), of which they are the sole developer, producer, and distributor. The web based HRST is the most widely used and validated health risk screening instrument for people with intellectual and developmental disabilities. IntellectAbility also provides numerous health-related and person-centered service trainings for supporters of people with IDD. With unrelenting focus, IntellectAbility works to fulfill its mission of improving health and quality of life for people with intellectual and developmental disabilities and other vulnerabilities. For more information, visit ReplacingRisk.com.