Perinatal & Pediatric
Fertility rates in women with intellectual and developmental disabilities enrolled in Medicaid or Medicare, 2011-2019 Josue Antonio Estrada* Josue Antonio Estrada Nina Cesare Kathryn Barger Megan B. Cole Samantha E. Parker Sowmya Rao Martha Werler Eric Rubenstein
Women with intellectual and developmental disability (IDD) have historically been sterilized and institutionalized to prevent them from exercising their reproductive rights. As sterilization laws have been repealed and protections against institutionalization enacted, stigma in childbearing persists but may be changing over time. Our objective was to describe fertility rates among women aged 18-45 with IDD who were enrolled in Medicaid, Medicare or both, using 9 years (2011-2019) of national claims data. Medicaid and Medicare cover many low-income and disabled adults, including most adults with intellectual disability in the US. IDD was identified using claims with International Classification of Disease (ICD) 9 or 10 codes for intellectual disability or autism spectrum disorder (ASD). Using data on livebirths and total number of women with IDD, wee calculated general fertility rate (GFR), age-specific fertility rate (ASFR), and total fertility rate and corresponding 95% confidence intervals for each year. From 2011-2019, there were 36,407 livebirths from 25,027 women with IDD, of which 51.0% were White, non-Hispanic,29.8% Black, non-Hispanic, and 14.7% Hispanic. GFR, expressed as number of livebirths per 1,000 women with IDD, was relatively constant across years, with a rate of 10.5 (95% CI: 10.1, 10.8) in 2011 and 10.7 (95% CI: 10.3,11.0) in 2019. For women with autism and those with an intellectual disability (ID), the highest ASFR occurred at 21 to 25 years. Total fertility rates, defined as the average number of children of women born from age 18 to 45,were slightly higher for those with ID (ranging from 0.32 to 0.34 across years) than women with autism (ranging from 0.17 to 0.24 across years). In general, fertility rates in women with IDD were lower than documented rates in peers without IDD and there was little change from 2011-2019. Future work will evaluate differences in fertility rates between Black and white and Hispanic and non-Hispanic women with IDD.
