# Improving pregnancy outcomes for women with intellectual and developmental disabilities in Medicaid

> **NIH NIH R01** · BOSTON UNIVERSITY MEDICAL CAMPUS · 2024 · $654,809

## Abstract

Project Abstract
Women with intellectual and developmental disabilities (IDD) face stigmatization and healthcare inequity
surrounding reproductive rights and pregnancy. Institutionalization and forced sterilization were, and still often
are, too common. A lack of opportunity for women with IDD has limited our knowledge of pregnancy in a group
already facing economic, health, and educational inequities. It is crucial to identify perinatal interventions for
pregnant women with IDD because they face increased risk of maternal morbidity and poor birth outcomes.
Access to Medicaid pre-pregnancy reduces maternal morbidity but enrollment policies differ by state.
Understanding when pregnant women with IDD enroll for Medicaid may be a pivotal tool in increasing
opportunity for prenatal care. In the general population, timely and high-quality prenatal care can reduce the
risk of maternal morbidity, preterm birth, and rehospitalization. We do not know how prenatal care impacts
outcomes for women with IDD. Medicaid Home and Community Based Services (HCBS) waivers allow for
additional services (e.g., transportation) that help people with IDD thrive in their communities, but how waivers
impact access to prenatal care are not known. Our goal is to use national data, in conjunction with qualitative
interviews of women with IDD, to identify optimal practices and policies that reduce maternal morbidity in
Medicaid enrolled women with IDD. We propose to use data of Medicaid covered pregnancies to women with
IDD (N>72,000) from 2011-2022 to identify impacts of pre-pregnancy Medicaid enrollment, prenatal care
adequacy, and HCBS waiver receipt on gestational diabetes, preterm birth, and re-hospitalization in women
with IDD. In parallel, women with IDD are experts in their experience and we will conduct qualitative interviews
with women with IDD who are or were pregnant to capture the lived experience of women with IDD throughout
the reproductive course, with specific emphasis on prenatal care and health insurance enrollment. Our aims
are to Describe pre-pregnancy Medicaid enrollment in women with IDD and examine if pre-pregnancy
enrollment is associated with reduction in preterm birth, gestational diabetes, and post-partum hospitalization;
2) Describe timing and adequacy of prenatal care in women with IDD and examine if adequacy of prenatal care
is associated with reduction in preterm birth, gestational diabetes, and postpartum hospitalization; 3) Describe
patterns in HCBS waiver receipt and type of services used in pregnant women with IDD and examine if HCBS
receipt and type are associated with prenatal care adequacy and post-partum hospitalization; 4) Investigate
health care and legal barriers, opportunities to improve pregnancy care and outcomes and inform quantitative
analyses by conducting semi-structured interviews with women with IDD. Our approach uses quantitative and
qualitative data to identify key factors in individual care and state level policy that will...

## Key facts

- **NIH application ID:** 10817751
- **Project number:** 5R01HD109135-02
- **Recipient organization:** BOSTON UNIVERSITY MEDICAL CAMPUS
- **Principal Investigator:** Eric S Rubenstein
- **Activity code:** R01 (R01, R21, SBIR, etc.)
- **Funding institute:** NIH
- **Fiscal year:** 2024
- **Award amount:** $654,809
- **Award type:** 5
- **Project period:** 2023-04-01 → 2028-01-31

## Primary source

NIH RePORTER: https://reporter.nih.gov/project-details/10817751

## Citation

> US National Institutes of Health, RePORTER application 10817751, Improving pregnancy outcomes for women with intellectual and developmental disabilities in Medicaid (5R01HD109135-02). Retrieved via AI Analytics 2026-05-22 from https://api.ai-analytics.org/grant/nih/10817751. Licensed CC0.

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