Experiences with and perceptions of the child welfare system during the perinatal period of mothers with intellectual and developmental disabilities

Mothers with intellectual and developmental disabilities (IDD) face compounding disparities within perinatal and child welfare systems, yet their experiences at this critical intersection remain understudied. This qualitative study interviewed 16 mothers with IDD who recently gave birth to explore their perceptions and encounters with the child welfare system during the perinatal period. Adverse themes emerged surrounding (a) fear of having children removed, (b) wariness of the healthcare system from some mothers, though others viewed providers as supportive, (c) insufficient assistance, and (d) trauma and stress. Conversely, positive themes included (a) support from others, including certain healthcare providers viewed as protective, and (b) believing in oneself. The findings underscore pervasive bias and lack of disability cultural competence across both systems, compounding adverse perinatal outcomes for this population. Improving equitable care necessitates comprehensive policy reforms mandating professional training on disability, non-discriminatory practices, and strengths-based family preservation approaches. Implications span enhancing disability cultural competence through provider training, increasing supportive services, promoting self-advocacy and empowerment, and prioritizing family-centered, individualized care models guided by the disability community's insights. An expansive research agenda is also urgently needed.