Project Description:
Equitable parenting opportunities are a civil right that extends to the estimated over 7 million people in the United States (US) with intellectual and developmental disabilities (IDD) (ARC, 2021). Yet, parents with IDD (i.e., parents/caregivers who themselves have an IDD) are disproportionately at risk of having their parental rights terminated (LaLiberte et al., 2017). While research on parents with IDD is emerging (e.g., Edwards et al., 2023; Koolen et al., 2020; Zijlstra et al., 2023), the proposed project plans to use community-based participatory research (CBPR) and mixed methods approaches to reduce critical knowledge gaps regarding the provision of training and support to parents with IDD. All aspects of the study will be guided by the UConn UCEDD's CAC. The specific aims are:
1. Conduct a national scan and content analysis of all programs and curriculums offered through each state and territory's developmental disabilities agencies, child welfare agencies, developmental disabilities networks (e.g., University of Excellence in Developmental Disabilities, Developmental Disability [UCEDDs]) and provider agencies for adults with IDD (e.g., ARCs). This will include an assessment of disparities in identification, enrollment, and retention of parents with IDD, and outcomes across multilevel domains (e.g., parent demographics, disability level, implementing agency sector, size, geography).
2. Examine perceptions of professionals who provide training and support to parents with IDD about implementation challenges and recommendations for improvement, and perceptions of mothers with IDD about their needs and satisfaction with services they have received. We will conduct online surveys with a national sample of service providers (n=60); a subset (n=15) will also participate in semi-structured interviews. Additionally, we will conduct virtual focus groups with a representative sample of parents with IDD who have at least one child aged 0-17 years (n=60 total) from across the US.
