Improving pregnancy outcomes for women with intellectual and developmental disabilities in Medicaid

Project Abstract Women with intellectual and developmental disabilities (IDD) face stigmatization and healthcare inequity surrounding reproductive rights and pregnancy. Institutionalization and forced sterilization were, and still often are, too common. A lack of opportunity for women with IDD has limited our knowledge of pregnancy in a group already facing economic, health, and educational inequities. It is crucial to identify perinatal interventions for pregnant women with IDD because they face increased risk of maternal morbidity and poor birth outcomes. Access to Medicaid pre-pregnancy reduces maternal morbidity but enrollment policies differ by state. Understanding when pregnant women with IDD enroll for Medicaid may be a pivotal tool in increasing opportunity for prenatal care. In the general population, timely and high-quality prenatal care can reduce the risk of maternal morbidity, preterm birth, and rehospitalization. We do not know how prenatal care impacts outcomes for women with IDD. Medicaid Home and Community Based Services (HCBS) waivers allow for additional services (e.g., transportation) that help people with IDD thrive in their communities, but how waivers impact access to prenatal care are not known. Our goal is to use national data, in conjunction with qualitative interviews of women with IDD, to identify optimal practices and policies that reduce maternal morbidity in Medicaid enrolled women with IDD. We propose to use data of Medicaid covered pregnancies to women with IDD (N>72,000) from 2011-2022 to identify impacts of pre-pregnancy Medicaid enrollment, prenatal care adequacy, and HCBS waiver receipt on gestational diabetes, preterm birth, and re-hospitalization in women with IDD. In parallel, women with IDD are experts in their experience and we will conduct qualitative interviews with women with IDD who are or were pregnant to capture the lived experience of women with IDD throughout the reproductive course, with specific emphasis on prenatal care and health insurance enrollment. Our aims are to Describe pre-pregnancy Medicaid enrollment in women with IDD and examine if pre-pregnancy enrollment is associated with reduction in preterm birth, gestational diabetes, and post-partum hospitalization; 2) Describe timing and adequacy of prenatal care in women with IDD and examine if adequacy of prenatal care is associated with reduction in preterm birth, gestational diabetes, and postpartum hospitalization; 3) Describe patterns in HCBS waiver receipt and type of services used in pregnant women with IDD and examine if HCBS receipt and type are associated with prenatal care adequacy and post-partum hospitalization; 4) Investigate health care and legal barriers, opportunities to improve pregnancy care and outcomes and inform quantitative analyses by conducting semi-structured interviews with women with IDD. Our approach uses quantitative and qualitative data to identify key factors in individual care and state level policy that will ultimately be developed into interventions and state and national policies. As more women with IDD start families, our work is fundamental in ensuring that pregnant women with IDD thrive.