American women have the highest rate of maternal deaths among high-income countries, with outcomes worse for minoritized groups. In an effort to understand the maternal health of pregnant people with intellectual and developmental disabilities, including autism and intellectual disability, researchers from Drexel University's Policy and Analytics Center in the A.J. Drexel Autism Institute examined Medicaid data to identify perinatal and postpartum outcomes among people with intellectual and developmental disabilities. The study was recently published in JAMA Network Open.
"While previous studies have reported an increased risk for challenges related to pregnancy and birth among people with intellectual and developmental disabilities, little research has been done using United States-based population-level data," said Lindsay Shea, DrPH, director of the Policy and Analytics Center in the A.J. Drexel Autism Institute and lead author of the study. "Medicaid is a key system to study these risks and opportunities for policy and program improvements because it covers almost half of births in the U.S. and a disproportionate share of people with intellectual and developmental disabilities."
The data showed people with intellectual and developmental disabilities were younger at the time of their first delivery and had higher risks for multiple medical and mental health conditions, including gestational diabetes, gestational hypertension and preeclampsia. Autistic pregnant people had significantly higher probability of postpartum anxiety and postpartum depression, compared to people with intellectual disabilities only and people without intellectual and developmental disabilities.
Researchers examined national Medicaid claims to compare perinatal and postpartum outcomes across groups of birthing people with intellectual and developmental disabilities (including intellectual disability and autism) and a random sample of birthing people without intellectual and developmental disabilities. The data included Medicaid claims from 2008-2019 for 55,440 birthing people with intellectual and developmental disabilities and a random sample of 438,557 birthing people without intellectual and developmental disabilities.
Perinatal outcomes, including medical conditions such as gestational diabetes, gestational hypertension, and preeclampsia, and mental health conditions, such as anxiety disorders and depressive disorders, were compared across the groups. Researchers estimated the probability of postpartum anxiety and postpartum depression using Kaplan-Meier and Cox proportional hazard regressions.
Co-author Molly Sadowsky, project director in the Policy and Analytics Center in the Autism Institute, explained how the findings suggest several opportunities for policymakers, providers and researchers. Reproductive health education, perinatal care and delivery services should be tailored to ensure comprehensive and targeted support for birthing people with intellectual and developmental disabilities. Policies should be designed and implemented to align with and be guided by the needs of people with intellectual and developmental disabilities to reduce maternal health disparities. Current clinical guidelines and procedures should be adapted to the specific needs and experiences of people with intellectual and developmental disabilities. And new Medicaid policies – like the postpartum coverage extension and doula service reimbursement – should be evaluated for impact on health outcomes of people with intellectual and developmental disabilities.
"Findings from this study underscore an urgent need for attention on Medicaid in supporting birthing people with intellectual and developmental disabilities throughout the perinatal period," said Sadowsky. "It's vital that differences in access to and coordination of postpartum care, as well as related differences in risk for postpartum depression and anxiety, continue to be examined."
Shea and Sadowsky explained where this work will continue.
"We'll advance this work in our next project by examining the impact of attitudinal and structural ableism on perinatal health and mental health outcomes, as well as neonatal and postnatal outcomes, morbidity, and mortality among children of women with and without intellectual and developmental disabilities," said Shea.
Shea and her research team were recently awarded a five year $3 million National Institutes of Health Research Project Grant (R01) to further explore this area.
The future study will conduct a detailed examination of the impact of ableism on women with intellectual and developmental disabilities during pregnancy and the postpartum period, and will compare outcomes experienced by this group and their infants to those of peers without intellectual and developmental disabilities.
"Parenthood and reproductive health are important times in everyone's life to be supported in getting the services and supports that work for each person and for each family," said Shea. "We are excited about the future of our work on this topic to find ways that the health care system can do better and we can support people and celebrate their birthing experiences and roles in these tumultuous times in life."
