Fertility Rates Among Women With Intellectual and Developmental Disability Enrolled in Medicaid and/or Medicare, 2011–2022

BACKGROUND: Women with intellectual and developmental disability (IDD), including those with autism and/or intellectual disability, have historically been sterilised and institutionalised to limit their reproductive rights. As sterilisation laws have been repealed and protections against institutionalisation enacted, stigma persists but may be changing over time. OBJECTIVES: Our objective was to describe fertility rates among women with identified IDD (defined using ICD codes for intellectual disability or autism) using 11 years of data of all women aged 18-45 and enrolled in Medicaid and/or Medicare. METHODS: We identified a cohort of women with IDD enrolled in Medicaid and/or Medicare between January 2011 and December 2022. International Classification of Diseases (ICD) 9 and 10 codes were used to identify pregnancies and IDD diagnoses. We calculated general fertility rate (GFR), age-specific fertility rate (ASFR) and total fertility rate (TFR) and corresponding 95% confidence intervals (CI) for each year. RESULTS: From 2011 to 2022, we observed 50,562 livebirths among 33,457 women. There were 38,983 births to women with intellectual disability, 9360 with autism, and 2219 with autism and co-occurring intellectual disability. There were 1403 pregnancies to women with cerebral palsy and autism or intellectual disability. GFR in women with IDD was relatively stable over the years, from 9.3 per 1000 (95% CI 9.0, 9.6) in 2011 to 9.9 per 1000 (95% CI 9.6, 10.2) in 2022. ASFR for both women with autism-only and women with an intellectual disability-only was highest at 21-25 years. Total fertility rates were slightly higher for those with autism-only (ranging from 0.22 to 0.40 across years) than for women with intellectual disability-only (ranging from 0.25 to 0.27). Data also reveal that fertility rates for women with IDD have increased in most states. CONCLUSION: Trends in fertility rates among women with IDD were consistent over time. Incremental increase in fertility rates were observed among women with autism. Results warrant the need to further examine factors related to access, quality and continuity of care among women with IDD.