Improving pregnancy outcomes for women with intellectual and developmental disabilities in Medicaid
Project Number5R01HD109135-03
Former Number1R01HD109135-01
Contact PI/Project LeaderRUBENSTEIN, ERIC S
Awardee OrganizationBOSTON UNIVERSITY MEDICAL CAMPUS
Description
Abstract Text
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 ultimately be developed
into interventions and state and national policies. As more women with IDD start families, our work is
fundamental in ensuring that pregnant women with IDD thrive.
Public Health Relevance Statement
Project Narrative
Women with intellectual and developmental disabilities (IDD) face obstacles throughout pregnancy that lead to
morbidity and mortality. This project contributes to public health knowledge by using a novel data set of all
Medicaid covered pregnancies to women with IDD from 2011-2022 to identify the impacts of pre-pregnancy
Medicaid enrollment, adequate prenatal care, and Home and Community Based Service waivers on reducing
maternal morbidity for women with IDD. In parallel, we will conduct qualitative interviews with women with IDD
who have been or are pregnant to understand their lived experience in relation to Medicaid service use and
prenatal enrollment, which will inform and be informed by quantitative analyses.
NIH Spending Category
No NIH Spending Category available.
Project Terms
AdvocateAffectAgeBiometryBirthBirth PlaceCaringChildChild RearingCommunitiesContinuity of Patient CareDataData SetDisabled PersonsDisparityEconomicsEducationEnrollmentEnsureEthnic OriginFaceFamilyGeneral PopulationGestational DiabetesGoalsHealthHealth CareHealth Care SystemsHealth InsuranceHomeHospitalizationIndividualInequityInstitutionalizationInsurance CoverageIntellectual functioning disabilityInterventionInterviewInvoluntary SterilizationKnowledgeLegalLived experienceLow incomeMeasuresMedicaidMedicaid servicesMethodologyMethodsModelingModificationMorbidity - disease rateMothersNational Institute of Child Health and Human DevelopmentOutcomePatternPerinatal EpidemiologyPerinatologyPersonsPoliciesPostpartum PeriodPregnancyPregnancy OutcomePregnant WomenPremature BirthPrenatal carePreventionProbabilityPublic HealthQualitative ResearchRaceReproductive HealthReproductive RightsResearchRiskRisk ReductionServicesSterilizationStigmatizationStressStructureTransportationVisitWeightWisconsinWomanWomen's HealthWomen's RightsWorkcare outcomescohortcommunity based serviceexperiencehealth care disparityhealth inequalitieshealth knowledgehospital readmissionimprovedimproved outcomeinnovationinterestmaternal morbiditymaternal outcomematernal riskmortalitymultilevel analysisnovelpeerperinatal healthperinatal interventionpregnantprenatalprepregnancyracismreproductivesocial stigmatoolwaiverwomen with disabilitieswomen's morbiditywomen's outcomes
Eunice Kennedy Shriver National Institute of Child Health and Human Development
CFDA Code
865
DUNS Number
604483045
UEI
FBYMGMHW4X95
Project Start Date
01-April-2023
Project End Date
31-January-2028
Budget Start Date
01-February-2025
Budget End Date
31-January-2026
Project Funding Information for 2025
Total Funding
$596,635
Direct Costs
$369,307
Indirect Costs
$227,328
Year
Funding IC
FY Total Cost by IC
2025
Eunice Kennedy Shriver National Institute of Child Health and Human Development
$596,635
Year
Funding IC
FY Total Cost by IC
Sub Projects
No Sub Projects information available for 5R01HD109135-03
Publications
Publications are associated with projects, but cannot be identified with any particular year of the project or fiscal year of funding. This is due to the continuous and cumulative nature of knowledge generation across the life of a project and the sometimes long and variable publishing timeline. Similarly, for multi-component projects, publications are associated with the parent core project and not with individual sub-projects.
No Publications available for 5R01HD109135-03
Patents
No Patents information available for 5R01HD109135-03
Outcomes
The Project Outcomes shown here are displayed verbatim as submitted by the Principal Investigator (PI) for this award. Any opinions, findings, and conclusions or recommendations expressed are those of the PI and do not necessarily reflect the views of the National Institutes of Health. NIH has not endorsed the content below.
No Outcomes available for 5R01HD109135-03
Clinical Studies
No Clinical Studies information available for 5R01HD109135-03
News and More
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History
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Similar Projects
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