PROMISE IDD

PROMISE IDD combines a national pregnancy dataset with interviews of individuals with IDD who used Medicaid during pregnancy. Our goal is to identify the best healthcare practices and policies that can reduce pregnancy-related health complications in Medicaid-enrolled women with IDD.

We want to hear about your pregnancy experience for our research study.

We are looking for people with intellectual and developmental disabilities to participate in an hour-long online interview about their experiences during pregnancy. Participants will receive a $50 Visa reward gift card for their time.

You may be eligible if you:

• Speak English
• Have a documented IDD diagnosis
• Are currently pregnant
• Were pregnant in the last 10 years
• Used Medicaid during pregnancy
• Lived in the United States during pregnancy
• Are 18 years of age or older

Examples of IDD diagnosis can include various conditions, such as:

• Non-intellectual disability conditions, like autism or cerebral palsy
• Fragile X syndrome
• Language or learning disorders

PROMISE IDD focuses on three key questions related to gestational diabetes, preterm birth, and hospital readmission.

• Does being enrolled in Medicaid before pregnancy improve pregnancy health and reduce complications?
• How does the timing and quality of prenatal care affect pregnancy health and reduce complications?
• How do home- and community-based services (HCBS) support pregnant individuals with IDD, and do they improve access to prenatal care and reduce hospitalizations?

By answering these questions, we hope to provide insights that will help improve healthcare access, prenatal care, and overall health outcomes for pregnant individuals with IDD.

• One online survey at screening and enrollment (10-30 minutes).
• One hour-long interview about your experiences during pregnancy (60 minutes).

Separate from the interviews, but informing our research, is the Medicaid pregnancy dataset.

We have data from more than 72,000 Medicaid-covered pregnancies from 2011 to 2022. We are looking at factors like Medicaid enrollment before pregnancy, prenatal care, and access to home- and community-based services (HCBS). We want to see how these factors affect health outcomes like gestational diabetes, preterm birth, and hospital readmission.