Unmet needs, limited access: A qualitative study of postpartum health care experiences of people with disabilities.

AIM: To understand the postpartum care received by birthing people with disabilities and their newborns, from their own perspectives. DESIGN: A qualitative study with semi-structured interviews. METHODS: Between July 2019 and February 2020, in-person and virtual interviews were conducted with 31 people with physical, sensory, and intellectual/developmental disabilities in Ontario, Canada, about the formal inpatient and outpatient services and supports they used in the first few months after they gave birth. Thematic analysis was used identify common themes. RESULTS: We identified three overall themes concerning participants' postpartum care experiences and the different types of formal services received in and out of hospital: (1) lack of adequate care, (2) lack of provider awareness of disability and disability accommodations, and (3) fear of judgement, discrimination, and intrusive surveillance. The identified themes were applicable across disability groups. However, most comments on disability accommodations came from participants with physical or sensory disabilities, while participants with intellectual/developmental disabilities most commonly reported concerns about lack of adequate care and fear of judgement, discrimination, and intrusive surveillance. CONCLUSION: Findings indicate that postpartum care often fails people with disabilities. This could contribute to negative health consequences for them and their newborns. IMPACT: Birthing people with disabilities need multidisciplinary, proactive, and strengths-based postpartum care to mitigate risk for health complications. Further, disability-related training and guidelines for health and social service providers is required. REPORTING METHOD: Consolidated criteria for reporting qualitative research (COREQ). PATIENT OR PUBLIC CONTRIBUTION: Our research team included two peer researchers with physical disabilities who served as co-interviewers and participated in data analysis, contributing their lived experience of disability and interactions with the health care system. All stages of the study were also informed by feedback from the study's Advisory Committee, which comprised women with disabilities (many of whom are parents), disability organization staff, clinicians, and policy representatives.

Clinician-reported barriers to providing perinatal care to women with intellectual and developmental disabilities.

Background: Research suggests that women with intellectual and developmental disabilities are at increased risk for adverse pregnancy outcomes. Further, they report unmet perinatal care needs. This qualitative study examined clinician perspectives on barriers to providing perinatal care to women with intellectual and developmental disabilities. Method: We conducted semi-structured interviews and one focus group with US obstetric care clinicians (n=17). We used a content analysis approach to code data and analyse them for larger themes and relationships. Results: The majority of participants were white, non-Hispanic, and female. Participants reported barriers providing care to pregnant women with intellectual and developmental disabilities across individual (e.g., communication challenges), practice (e.g., identification of disability status), and system levels (e.g., lack of clinician training). Conclusions: Clinician training and evidence-based guidelines for perinatal care of women with intellectual and developmental disabilities as well as services and supports during pregnancy are needed.

Perinatal mental illness among women with disabilities: a population-based cohort study.

PURPOSE: To examine the risk of perinatal mental illness, including new-onset disorders and recurrent or ongoing use of mental health care, comparing women with physical, sensory, intellectual/developmental, and multiple disabilities to those without a disability. METHODS: From all women aged 15-49 years with a singleton birth in Ontario, Canada (2003-2018), those with physical (n = 144,972), sensory (n = 45,249), intellectual/developmental (n = 2,227), and ≥ 2 of these disabilities ("multiple disabilities"; n = 8,883), were compared to 1,601,363 without a disability on risk of healthcare system contact for mental illness from conception to 365 days postpartum. The cohort was stratified into: (1) no pre-pregnancy mental illness (to identify new-onset illness), (2) distal mental illness (> 2 years pre-pregnancy, to identify recurrent illness), and (3) recent mental illness (0-2 years pre-pregnancy, to identify ongoing contact). Modified Poisson regression generated relative risks (aRR), adjusted for age, parity, income quintile, and rural residence. RESULTS: About 14.7, 26.5, and 56.6% of women with no disabilities had new-onset, recurrent, and ongoing contact for mental illness, respectively, perinatally. Risks were elevated across disability groups for new-onset (physical: aRR 1.18, 95% CI 1.16-1.20; sensory: 1.11, 1.08-1.15; intellectual/developmental: 1.38, 1.17-1.62; multiple: 1.24, 1.15-1.33), recurrent (physical: 1.10, 1.08-1.12; sensory 1.06, 1.02-1.09; intellectual/developmental: 1.24, 1.11-1.37; multiple: 1.16, 1.09-1.23), and ongoing contact (physical: 1.09, 1.08-1.10; sensory: 1.08, 1.06-1.10; intellectual/developmental: 1.31, 1.26-1.37; multiple: 1.20, 1.16-1.23). CONCLUSION: The heightened use of new, recurrent, and ongoing mental health care across disability groups in the perinatal period suggests that adapted screening and intervention approaches are critical to optimize perinatal mental health in this population.

Household food insufficiency, health status and emergency healthcare utilisation among children with and without special healthcare needs.

OBJECTIVE: To compare exposure to household food insufficiency and the relationship between household food insufficiency and both health status and emergency healthcare utilisation among children with and without special healthcare needs (SHCN). DESIGN: Analysing pooled data from the 2016-2017 iterations of the National Survey of Children's Health, we conducted multivariate logistic regressions on household food insufficiency, health status and emergency healthcare utilisation. We assessed interactions between household food insufficiency and children's SHCN status in our models of health status and utilisation. SETTING: United States. PARTICIPANTS: Parents of a nationally representative sample of non-institutionalised children (aged 0-17 years). RESULTS: Children with SHCN were more likely to experience household food insufficiency (70 v. 56 %), non-excellent health status (67 v. 28 %) and emergency healthcare utilisation (32 v. 18 %) than other children. Household food insufficiency was associated with 37 % (children with SHCN) and 19 % (children without SHCN) reductions in the likelihood of having excellent health. Household food insufficiency was associated with a roughly equal (16-19 %) increase in the likelihood of emergency department utilisation across groups. CONCLUSIONS: Compared with other children, children with SHCN have an elevated risk of exposure to household food insufficiency and experiencing greater reductions in health status when exposed.

Food insecurity patterns before and after initial receipt of Supplemental Security Income.

OBJECTIVE: To assess patterns of food insecurity before and after initial receipt of Supplemental Security Income (SSI) benefits. DESIGN: We analysed data from a nationally representative sample. We estimated two difference-in-difference models comparing food insecurity patterns among eventual SSI recipients with patterns among eligible non-recipients during two time frames. The first model assessed changes in food insecurity immediately before SSI benefits were first received and the second model assessed changes in food insecurity after programme entry. SETTING: 2008 panel of the Survey of Income and Program Participation.ParticipantsNon-institutionalized population of the USA. RESULTS: The percentage of eventual SSI recipients experiencing food insecurity rose from 18 to 30 % in the year before programme entry, compared with a change from 17 to 18 % for eligible non-recipients. Adjusting for sociodemographic covariates, the difference-in-difference estimator for this comparison was statistically significant (P=0·01). Additionally, the percentage of recipients experiencing food insecurity fell from 28 % in the year before programme entry to 16 % in the year after entry, compared with a change from 16 to 17 % for eligible non-recipients. Adjusting for sociodemographic covariates, the difference-in-difference estimator for this comparison was marginally significant (P=0·07). CONCLUSIONS: Food insecurity rises prior to SSI entry but may be alleviated by programme benefits. Greater nutritional supports for SSI applicants awaiting decisions may reduce the burden of food insecurity in this population and improve health outcomes.

Postpartum Hospital Utilization among Massachusetts Women with Intellectual and Developmental Disabilities: A Retrospective Cohort Study.

Objectives This study examined the risk of postpartum hospital admissions and emergency department (ED) visits among US women with intellectual and developmental disabilities (IDD). Methods We used the 2002-2012 Pregnancy to Early Life Longitudinal Data System and identified deliveries to women with and without IDD. Women with IDD (n = 1104) or case subjects were identified from the International Classification of Diseases and Related Health Problems 9th Revision (ICD-9 CM) codes. The study primary outcome measures were any postpartum hospital admission and any ED visit during three critical postpartum periods (1-42, 43-90, and 1-365 days). We conducted unadjusted and adjusted survival analysis using Cox proportional hazard models to compare the occurrence of first hospital admission or ED visits between women with and without IDD. Results We found that women with IDD had markedly higher rates of postpartum hospital admissions and ED visits during the critical postpartum periods (within 1-42, 43-90, and 91-365 days) after a childbirth. Conclusion for Practice Given the heightened risk of pregnancy complications and adverse birth outcomes and the findings of this study, there is an urgent need for clinical guidelines related to the frequency and timing of postpartum care among new mothers with IDD. Further, this study provides evidence of the need for evidence-based interventions for new mothers with IDD to provide preventive care and routine assessments that would identify and manage complications for both the mother and the infant outside of the traditional postpartum health care framework.

Associations Between Early Intervention Home Visits, Family Relationships and Competence for Mothers of Children with Developmental Disabilities.

Objectives To examine the association between intensity of home visits in early intervention (EI), perceived helpfulness of home visits in EI, and positive family relationships as predictors of maternal competence at age 3, as well as moderating effects of predictors, controlling for child characteristics, family demographics, and negative life events. Methods Data were drawn from the Early Intervention Collaborative Study (EICS), a 24-year longitudinal investigation of approximately 190 families of children with developmental disabilities who participated in EI programs in Massachusetts and New Hampshire. The primary analytic strategy was multivariable regression modeling. Each independent predictor was tested individually and then all together to build the final model. Interactions between independent predictors were also examined. Results After controlling for child and family characteristics and negative life events, the intensity of home visits was not significantly associated with maternal competence at age 3. However, the helpfulness of home visits (ß = 2.94, S.E. = 1.12, p < .01) and positive family relationships (ß = 5.11, S.E. = 1.08, p < .001) were associated with higher maternal competence when the child was 3 years old. Conclusions for Practice Recommendations for programs and policy include collecting life course data on families, particularly on their family relationships and experiences in EI and home visiting, assessing family relationships at the beginning of EI using a strengths-based perspective, and closely monitoring the quality of services.

Inpatient Medicaid Usage and Expenditure Patterns After Changes in Supplemental Nutrition Assistance Program Benefit Levels.

INTRODUCTION: Food insecurity worsens health outcomes and is associated with increased health care usage and expenditures. The Supplemental Nutrition Assistance Program (SNAP) reduces but does not eliminate recipients' food insecurity. We sought to determine whether inpatient Medicaid usage and expenditure patterns responded to an April 2009 increase in SNAP benefit levels and a subsequent November 2013 decrease. METHODS: Interrupted time series models estimated responses to the 2009 and 2013 SNAP changes in the Medicaid population, compared responses between Medicaid and Medicare recipients, and compared responses between Medicaid recipients with different likelihoods of having a disability. Analyses used 2006 through 2014 Healthcare Cost and Utilization Project National (previously Nationwide) Inpatient Sample data. RESULTS: After the 2009 SNAP increase, Medicaid admission growth fell nationally from 0.80 to 0.35 percentage points per month (a difference of -0.45; 95% CI, -0.72 to -0.19), adjusting for enrollment. After the 2013 SNAP decrease, admission growth rose to 2.42 percentage points per month (a difference of 2.07; 95% CI, 0.68 to 3.46). Inflation-adjusted monthly Medicaid expenditures followed similar patterns and were associated with $26.5 billion (in 2006 dollars) in reduced expenditures over the 55 months of the SNAP increase, and $6.4 billion (in 2006 dollars) in additional expenditures over the first 14 months after the SNAP decrease. Effects were elevated for Medicaid compared with Medicare recipients and among people with a high likelihood of having a disability. CONCLUSION: Although alternative causal explanations warrant consideration, changes in SNAP benefit levels were associated with changes in inpatient Medicaid usage and cost patterns.

Health Care Changes for Children with Special Health Care Needs, 2005-2011.

Objective This study compared health care utilization of children with special health care needs in 2005/06 and 2009/10. Methods Using data from the National Survey of Children with Special Health Care Needs, this study compared the health care utilization of children with special health care needs in 2005/06 (n = 40,723) and 2009/10 (n = 40,242). Descriptive statistics characterize the sample during the 2005/06 and 2009/10 surveys. Logistic regression models examined the unmet needs for specific health care and support services, delayed care, coordinated care, and medical home. Results Compared to 2005/06, in 2009/10 children with special health care needs had greater unmet dental and therapy needs and less care coordination of health services as well as access to medical home services. Conclusions These findings indicate that additional measures are needed to improve the health care access of children with special health care needs.

The Health and Economic Well-Being of US Mothers with Intellectual Impairments.

BACKGROUND: While the United States has seen increased attention by policymakers on the rights of parents with disabilities, there is limited understanding of the health and economic well-being of parents with intellectual impairments. This study compares the health and economic well-being of mothers with and without intellectual impairments. METHODS: This descriptive, exploratory study is a secondary analysis of the Fragile Families and Child Wellbeing Study. This study includes a subsample of mothers of three-year-old children (n = 1561), including mothers with intellectual impairments (n = 263) and without intellectual impairments (n = 1298). RESULTS: US Mothers with intellectual impairments are more likely to report serious health conditions, have less instrumental support, live in poverty, receive public benefits and experience certain material hardships. CONCLUSION: Findings from this study indicate the need for policies and programmes to support parents with intellectual impairments by addressing their health and economic needs.

Healthcare expenditures for autism during times of school transition: some vulnerable families fall behind.

This study explores the association between school transition age and healthcare expenditures for children with autism. The paper explores three questions: (1) What is the composition of services overall and paid out-of-pocket and does it differ at transition? (2) Do transition age children have higher total and out-of-pocket health care expenditures than other children with autism? (3) Does the effect of transition differ for vulnerable families who often experience problems accessing care? Pooled data from the Medical Expenditure Panel Survey 2000-2009 on children under 21 years of age with autism (n = 337) were used to describe expenditures for services by source of payment and estimate two-part models of total and out-of-pocket expenditures as a function of child transition age (5, 6, 11, 14) and other child and family characteristics. Median total annual expenditures for health care among children with autism are $2,400; median out-of-pocket expenditures are $390. The majority of total expenditures are devoted to outpatient medical services; nearly half of family out-of-pocket spending is devoted to prescription medications. When children are transition age, a larger proportion of both overall and out-of-pocket expenditures go toward ambulatory therapy, while a smaller proportion of out-of-pocket expenditures are devoted to prescription medications compared to children of other ages. Transition age children from vulnerable families experience a drop in expenditures that families with more resources fill through out-of-pocket spending. Findings raise questions about the dimensions of care for children with autism. Schools may be better positioned than health insurance to foster continuity of care.

Care integration in the Patient Protection and Affordable Care Act: implications for behavioral health.

Individuals with co-occurring serious mental illness and substance use disorders experience a highly fragmented system of care, contributing to poor health outcomes and elevated levels of unmet treatment needs. Several elements in the health care reform law may address these issues by enhancing the integration of physical and behavioral health care systems. The purpose of this paper is to analyze these elements, which fall into three domains: increasing access, restructuring financing and reimbursement mechanisms, and enhancing infrastructure. We conclude with a consideration of the implementation challenges that lie ahead.

Prenatal Care Experiences of Childbearing People With Disabilities in Ontario, Canada.

OBJECTIVE: To explore the care experiences of childbearing people with physical, sensory, and/or intellectual/developmental disabilities during pregnancy. DESIGN: Descriptive qualitative. SETTING: Ontario, Canada, where physician and midwifery care during pregnancy are provided at no direct cost to residents. PARTICIPANTS: Thirty-one people with physical, sensory, and/or intellectual/developmental disabilities (who self-identified as cisgender women [n = 29] and trans or nonbinary persons [n = 2]) who gave birth in the last 5 years. METHODS: We recruited childbearing people with disabilities through disability and parenting organizations, social media, and our team's networks. Using a semistructured guide, we conducted in-person and virtual (e.g., telephone or Zoom) interviews with childbearing people with disabilities in 2019 to 2020. We asked participants about the services they accessed during pregnancy and if services met their needs. We used a reflexive thematic analysis approach to analyze interview data. RESULTS: Across disability groups, we identified four common themes: Unmet Accommodation Needs, Lack of Coordinated Care, Ableism, and Advocacy as a Critical Resource. We found that these experiences manifested in unique ways based on disability type. CONCLUSION: Our findings suggest the need for accessible, coordinated, and respectful prenatal care for people with disabilities, with the requirements of such care depending on the needs of the individual person with a disability. Nurses can play a key role in identifying the needs and supporting people with disabilities during pregnancy. Education and training for nurses, midwives, obstetricians, and other prenatal care providers should focus on disability-related knowledge and respectful prenatal care.

Physical disability and venous thromboembolism during pregnancy and the postpartum period: a population-based cohort study.

BACKGROUND: Pregnancy and the postpartum period are a high-risk time for venous thromboembolism (VTE). Decreased mobility is also a major risk factor. However, the risk of peripregnancy VTE among individuals with physical disabilities is unknown. OBJECTIVES: To compare the risk of peripregnancy VTE between people with a physical disability and those without a physical disability. METHODS: This population-based cohort study comprised all births in Ontario, Canada, from 2007 to 2018. Physical disability was defined as a condition diagnosed before conception that was likely to result in restricted mobility. Modified Poisson regression was used to compare the risk of VTE during pregnancy and up to 6 weeks postpartum between people with a physical disability and those without a physical disability. Adjusted relative risks (aRRs) were calculated, controlling for demographics, history of VTE, thrombophilia, and other comorbidities. An additional analysis was used to evaluate the risk of peripregnancy VTE among people with physical disabilities who used a mobility aid. RESULTS: Of 1 220 822 eligible people, 13 791 (1.1%) had a physical disability. VTE occurred during pregnancy or up to 6 weeks of the postpartum period in 0.85% of the individuals with a physical disability and 0.47% of those without a physical disability (aRR, 1.52; 95% CI, 1.26-1.83). The rate of VTE was notably higher in those with a physical disability requiring a mobility aid (3.0%), generating an aRR of 3.05 (95% CI, 1.45-6.41), than in those without a physical disability. CONCLUSION: Pregnant people with a physical disability, especially those using a mobility aid, are at an increased risk of VTE. Anticoagulant prophylaxis could be considered in this group, especially in the presence of additional risk factors.

Disability and in-hospital breastfeeding practices and supports in Ontario, Canada: a population-based study.

BACKGROUND: Breastfeeding provides infants with nutrients required for optimal growth and development. We aimed to examine breastfeeding practices and supports that promote exclusive breastfeeding during the birth hospital stay among birthing parents with physical disabilities, sensory disabilities, intellectual or developmental disabilities, and multiple disabilities compared with those without a disability. METHODS: This population-based cohort study was done in Ontario, Canada. We accessed and analysed health administrative data from ICES and the Better Outcomes Registry & Network. We included all birthing parents aged 15-49 years who had a singleton livebirth between April 1, 2012, and March 31, 2018. The study outcomes were breastfeeding practices and supports that promoted exclusive breastfeeding during the birth hospital stay, conceptualised based on WHO-UNICEF Baby Friendly Hospital Initiative guidelines. Individuals with a physical disability, sensory disability, intellectual or developmental disability, or two or more (multiple) disabilities, identified using diagnostic algorithms, were compared with individuals without disabilities on the opportunity to initiate breastfeeding, in-hospital breastfeeding, exclusive breastfeeding at hospital discharge, skin-to-skin contact, and provision of breastfeeding assistance. Relative risks (RRs) were estimated using modified Poisson regression. FINDINGS: Our cohort included 634 111 birthing parents, of whom 54 476 (8·6%) had a physical disability, 19 227 (3·0%) had a sensory disability, 1048 (0·2%) had an intellectual or developmental disability, 4050 (0·6%) had multiple disabilities, and 555 310 (87·6%) had no disability. Individuals with intellectual or developmental disabilities were less likely than those without a disability to have an opportunity to initiate breastfeeding (adjusted RR 0·82, 95% CI 0·76-0·88), any in-hospital breastfeeding (0·85, 0·81-0·88), exclusive breastfeeding at hospital discharge (0·73, 0·67-0·79), skin-to-skin contact (0·90, 0·87-0·94), and breastfeeding assistance (0·85, 0·79-0·91). Those with multiple disabilities were less likely to have an opportunity to initiate breastfeeding (0·93, 0·91-0·96), any in-hospital breastfeeding (0·93, 0·92-0·95), exclusive breastfeeding at hospital discharge (0·90, 0·87-0·93), skin-to-skin contact (0·93, 0·91-0·95), and breastfeeding assistance (0·95, 0·92-0·98). Differences for individuals with a physical or sensory disability only were mostly non-significant. INTERPRETATION: Our findings show disparities in breastfeeding outcomes between individuals without a disability and individuals with intellectual or developmental disabilities or multiple disabilities, but not individuals with physical or sensory disabilities. There is a need for further research on the factors that contribute to breastfeeding intentions, practices, and supports in people with intellectual or developmental disabilities and multiple disabilities, especially factors that affect breastfeeding decision making. FUNDING: National Institutes of Health and the Canada Research Chairs Program.

Access to care for children with autism in the context of state Medicaid reimbursement.

This paper examines the role of state residence and Medicaid reimbursement rates in explaining the relationship between having autism and access to care for children. Three questions are addressed: (1) Is there variation across states in the relationship between having autism and access to care? (2) Does taking account of state residence explain a significant amount of the variation in this relationship? (3) Does accounting for Medicaid reimbursement rates enhance our understanding of this relationship? Data from the 2005 National Survey of Children with Special Health Care Needs were combined with state characteristics to estimate a hierarchical generalized linear model of the association between state residence, Medicaid reimbursement rate and problems accessing care for children with special health care needs with and without autism. Findings indicate there is significant variation between states in the relationship between having autism and problems accessing care, and accounting for state residence explains a significant amount of variation in the model. Medicaid reimbursement rates have an independent effect on access to care for children with autism: when families raising children with autism live in states with higher reimbursement rates, they have lower odds of experiencing problems accessing care. The state context in which families live impacts access to care for children with autism. Moreover, when families live in states with higher Medicaid reimbursement rates, they are less likely to experience problems getting care. The value of this analysis is that it helps identify where to look for strategies to improve access.

State Medicaid policies and the health care access of low-income children with special health care needs living in the American South.

BACKGROUND: The policy correlates that improve or impede the health care access of children with special health care needs (CSHCN), and particularly children living in the South, are not well understood. METHODS: We analyzed data from the 2005-2006 National Survey of CSHCN (n = 4560 Southern children and 8788 non-Southern children). State Medicaid policy predictors included the frequency of Medicaid eligibility renewals (6 or 12 months) and the level of reimbursement provided for high-complexity and moderate-complexity pediatric office visits. Hierarchical generalized linear modeling was used to examine the association between state Medicaid policy features and 5 indicators of health care access (delayed or foregone care, difficulty using services, difficulty getting referrals, unmet routine care needs, and unmet specialty care needs), after controlling for child, family, and state factors. RESULTS: Low-income Southern CSHCN who lived in states with less-frequent Medicaid eligibility renewal requirements and higher health care provider reimbursement rates had significantly better health care access than did their Southern counterparts in states with more-frequent Medicaid eligibility renewals and lower reimbursement rates. LIMITATIONS: These data are cross-sectional, and causality cannot be inferred. CONCLUSION: Policymakers interested in addressing state budget gaps should be concerned that doing so by increasing the frequency of Medicaid eligibility renewals or by cutting health care provider reimbursement rates may well result in adverse health care access for low-income Southern CSHCN.

Pregnancy recommendations from women with intellectual and developmental disabilities to their peers.

BACKGROUND: As recent as the mid-twentieth century, eugenics practices on women with intellectual and developmental disabilities were commonplace. Deinstitutionalization has led to an increasing proportion of women with intellectual and developmental disabilities living in the community and becoming pregnant. Previous research has reported barriers to maternal health care (i.e., perceived provider stigma, inadequate communication, stress surrounding child protective services involvement, and financial strain). Research shows that this population is at increased risk of adverse outcomes including preterm delivery, low birth weight babies, and maternal mortality. OBJECTIVE/HYPOTHESIS: This study aimed to explore recommendations from mothers with intellectual and developmental disabilities for other women to potentially improve pregnancy experiences for this population. METHODS: We conducted semi-structured individual interviews among 16 women with intellectual and developmental disabilities. Data were coded using a content analysis process and iteratively analyzed using inductive and deductive techniques to determine emergent themes. RESULTS: Participants offered recommendations for navigating pregnancy to their peers who are pregnant, or thinking about becoming pregnant. Themes included: (1) planning for birth; (2) advocating at the point-of-care; (3) seeking supports and services; (4) interacting with child protective services; (5) communicating with providers; and (6) exhibiting resilience. CONCLUSION: Our study highlights recommendations for improving pregnancy experiences of women with intellectual and developmental disabilities. Informed by the lived pregnancy experiences of our participants, these recommendations can inform clinician training, new guidelines, and services to support and improve pregnancy experiences for women with intellectual and developmental disabilities.

Formal and Informal Supports for Women With Intellectual and Developmental Disabilities During Pregnancy.

This article explores the role of formal and informal supports for women with intellectual and developmental disabilities (IDD) throughout their pregnancy, childbirth, and postpartum experiences. Data from qualitative interviews with women with IDD (n = 16) were analyzed. Results showed that formal supports aided in planning, transportation, advocacy, and providing emotional support throughout pregnancy. Informal supports helped with errands, comfort, and emotional encouragement. The community surrounding these women facilitated communication with providers, self-empowerment regarding health choices, and increased preparedness for parenthood. Findings indicate the importance of encouraging and sustaining both formal and informal supports during pregnancy, childbirth, and postpartum to improve pregnancy and parenting experiences for women with IDD.