# PREGNANCY RATES, RISK FACTORS, AND CHILD AND MOTHER OUTCOMES FOR WOMEN WITH INTELLECTUAL AND DEVELOPMENTAL DISABILITIES IN WISCONSIN.

> **NIH NIH R03** · BOSTON UNIVERSITY MEDICAL CAMPUS · 2020 · $82,500

## Abstract

Project abstract
Over 2.2 million US adults have an intellectual or developmental disability (IDD), and experience disparities in
economic standing, health, and education. In the past twenty years, more young people are carrying IDD
diagnoses (5.8% of children age 3-17, 35% increase since 1999). As this population enters the reproductive
period, individuals, families, and researchers have raised concern about wellbeing during pregnancy and
parenthood for women with IDD and their children. It is vital to understand the current proportion of
pregnancies; risk factors for poor pregnancy outcomes; and resulting maternal and child developmental
outcomes and familial service use in women with IDD to adequately serve the population with IDD and prepare
for future, larger cohorts exercising their reproductive rights. We aim to build the foundational knowledge
necessary to improve pregnancy outcomes and develop programs to support parents with IDD. In this R03, we
propose to leverage the Big Data 4 Little Kids (BD4LK) project which links Wisconsin State Medicaid for all
pregnancies from 2007-2016 (N≈260 000) to one-year prepregnancy Medicaid claims, post-partum maternal
claims and health service use, and child health outcomes and health service use. Medicaid is the leading
health service provider for people with IDD in Wisconsin;6 yet, these data are underutilized to examine
reproductive and pregnancy related health outcomes service use. Our three aims are to: (1) Estimate
proportion of live births, and calculate age specific and total fertility rate in women with IDD in our BD4LK
sample, comparing results to mothers without IDD; (2) Evaluate whether pregnant women with IDD are at
greater risk for maternal pregnancy or child related complications compared to pregnant women without IDD
and investigate potential pathways; and (3) Characterize post-pregnancy outcomes for mothers with IDD and
their children including health outcomes and health service uptake and compare with outcomes for mothers
without IDD. This approach is innovative for its use of this unique data set, methodologically sound approach,
and interaction with women with IDD in the research process. Our results will help service providers better
serve women with IDD of reproductive age and their families. Results will also help us identify specific areas
for medical and behavioral intervention. As larger cohorts of individuals with IDD age and their reproductive
rights are recognized, we will see more parents with IDD.7-10 This grant will provide the preliminary data and
resources needed to support further data linkages to assess social service use. Additionally, this work will
support our aim to build a prospective longitudinal cohort of women with IDD and their families that can be
leveraged to study outcomes and service use and develop effective interventions to improve health and quality
of life for this growing population of parents with IDD and their children.

## Key facts

- **NIH application ID:** 10225820
- **Project number:** 7R03HD099619-02
- **Recipient organization:** BOSTON UNIVERSITY MEDICAL CAMPUS
- **Principal Investigator:** Eric S Rubenstein
- **Activity code:** R03 (R01, R21, SBIR, etc.)
- **Funding institute:** NIH
- **Fiscal year:** 2020
- **Award amount:** $82,500
- **Award type:** 7
- **Project period:** 2020-09-01 → 2022-08-31

## Primary source

NIH RePORTER: https://reporter.nih.gov/project-details/10225820

## Citation

> US National Institutes of Health, RePORTER application 10225820, PREGNANCY RATES, RISK FACTORS, AND CHILD AND MOTHER OUTCOMES FOR WOMEN WITH INTELLECTUAL AND DEVELOPMENTAL DISABILITIES IN WISCONSIN. (7R03HD099619-02). Retrieved via AI Analytics 2026-05-24 from https://api.ai-analytics.org/grant/nih/10225820. Licensed CC0.

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