PROMISE IDD

PROMISE IDD study thumbnail
PROMISE IDD Research Study Logo by artist Kathleen Coogan kathleendesigns.org

Policies for Reproductive Outcomes in Medicaid–Improving Services for Enrollees with Intellectual and Developmental Disabilities (PROMISE-IDD) 

Funding: Eunice Kennedy Shriver National Institute of Child Health and Human Development, 1R01HD109135-01  

PI: Eric Rubenstein, PhD ScM 

We want to improve the experience of people with intellectual and developmental disabilities during pregnancy. To do this, we will conduct a research study using national data and conduct interviews with people with intellectual and developmental disabilities. 

We are interested in three key factors that may influence pregnancy health outcomes for people with intellectual and developmental disabilities: 

  1. Medicaid: The timing of when people with intellectual and developmental disabilities enroll for Medicaid may influence their pregnancy experience and access to healthcare. 
  2. Prenatal care: It is understood that good prenatal care improves the health of parents and newborns. However, there is very little research about how prenatal care helps people with intellectual and developmental disabilities. 
  3. HCBS waivers: Medicaid Home and Community-Based Services (HCBS) waivers give people with intellectual and developmental disabilities the support they need to thrive in their communities. We want to know how these waivers affect prenatal care for people with intellectual and developmental disabilities. 

      People with intellectual and developmental disabilities are experts with lived experience. We will interview people with intellectual and developmental disabilities who are or were pregnant to better understand their needs, thoughts, and feelings when navigating the healthcare system. 

      Our aims are to: 

      1. Evaluate pre-pregnancy Medicaid enrollment in people with intellectual and developmental disabilities and its association with unwanted/negative pregnancy outcomes 
      2. See if when and how people with intellectual and developmental disabilities get prenatal care reduces unwanted/negative pregnancy outcomes. 
      3. Find out if HCBS waivers and related services are linked to good prenatal care and less hospitalization after birth. 
      4. Ask people with intellectual and developmental disabilities about their experiences with pregnancy to better understand the legal and healthcare barriers they face.