Severe maternal morbidity in deaf or hard of hearing women in the United States.

OBJECTIVE: Prior studies on severe maternal morbidity (SMM) have often excluded women who are deaf or hard of hearing (DHH), even though they are at increased risk of pregnancy complications and adverse birth outcomes. This study compared rates of SMM during delivery and postpartum among DHH and non-DHH women. METHODS: This nationally representative retrospective cohort study used hospital discharge data from the 2004-2020 Health Care and Cost Utilization Project Nationwide Inpatient Sample. The risk of SMM with and without blood transfusion during delivery and postpartum among DHH and non-DHH women were compared using modified Poisson regression analysis. The study was conducted in the United States in 2022-2023. RESULTS: The cohort included 9351 births to DHH women for the study period, and 13,574,382 age-matched and delivery year-matched births to non-DHH women in a 1:3 case-control ratio. The main outcomes were SMM and non-transfusion SMM during delivery and postpartum. Relative risks were sequentially adjusted for sociodemographic characteristics, hospital-level characteristics, and clinical characteristics. In unadjusted analyses, DHH women were at 80% higher risk for SMM (RR = 1.81, 95% CI 1.63-2.02, p < 0.001) during delivery and postpartum compared to non-DHH women. Adjustment for socio-demographic and hospital characteristics attenuated risk for SMM (RR = 1.54, 95% CI 1.38-1.72, p < 0.001). Adjustment for the Elixhauser comorbidity score further attenuated the risk of SMM among DHH women (RR = 1.13, 95% CI 1.01-1.26, p < 0.05). CONCLUSION: The findings of this study demonstrate a critical need for inclusive preconception, prenatal, and postpartum care that address conditions that increase the risk for SMM among DHH people.

Experiences of pregnancy and perinatal healthcare access of women who are deaf: a qualitative study.

OBJECTIVE: Women who are deaf experience higher rates of reproductive healthcare barriers and adverse birth outcomes compared with their peers who can hear. This study explores the pregnancy experiences of women who are deaf to better understand their barriers to and facilitators of optimal pregnancy-related health care. DESIGN: Qualitative study using thematic analysis. SETTING: Semi-structured, individual, remote or in-person interviews conducted in the USA. SAMPLE: Forty-five women who are deaf and communicate using American Sign Language (ASL) and gave birth in the USA within the past 5 years participated in the interviews. METHODS: Semi-structured interviews explored how mothers who are deaf experienced pregnancy and birth, including access to perinatal information and resources, relationships with healthcare providers, communication access and their involvement with the healthcare system throughout pregnancy. A thematic analysis was conducted. MAIN OUTCOME MEASURES: Barriers and facilitators related to a positive experience of perinatal care access among women who are deaf. RESULTS: Three major themes emerged: (1) communication accessibility; (2) communication satisfaction; and (3) healthcare provider and team support. Common barriers included choosing healthcare providers, inconsistent communication access and difficulty accessing health information. However, when women who are deaf were able to use ASL interpreters, they had more positive pregnancy and birth experiences. Self-advocacy served as a common facilitator for more positive pregnancy and healthcare experiences. CONCLUSIONS: Healthcare providers need to be more aware of the communication and support needs of their patients who are deaf, especially how to communicate effectively. Increased cultural awareness and consistent provision of on-site interpreters can improve pregnancy and birth experiences for women who are deaf.

Pregnancy, Fetal, and Neonatal Outcomes Among Women With Traumatic Brain Injury.

OBJECTIVE: There have been no systematic studies of pregnancy outcomes among women with traumatic brain injury (TBI), potentially limiting informed clinical care for women with such injuries. The purpose of this exploratory study was to evaluate pregnancy and fetal/neonatal outcomes among women with a TBI diagnosis recorded during their delivery hospitalization compared with women without TBI. SETTING: In this cross-sectional study, we identified women with delivery hospitalizations using 2004-2014 data from the Nationwide Inpatient Sample of the Health Care and Cost Utilization Project. PARTICIPANTS: We identified deliveries to women with a TBI diagnosis on hospital discharge records, which included all diagnoses recorded during the delivery, and compared them with deliveries of women without a TBI diagnosis. MAIN MEASURES: Pregnancy outcomes included gestational diabetes; preeclampsia/eclampsia; placental abruption; cesarean delivery; and others. Fetal/neonatal outcomes included preterm birth; stillbirth; and small or large gestational age. DESIGN: We modeled risk for each outcome among deliveries to women with TBI compared with women without TBI, using multivariate Poisson regression. Models included sociodemographic and hospital characteristics; secondary models added clinical characteristics (eg, psychiatric disorders) that may be influenced by TBI. RESULTS: We identified 3 597 deliveries to women with a TBI diagnosis and 9 106 312 deliveries to women without TBI. Women with TBI were at an increased risk for placental abruption (relative risk [RR] = 2.73; 95% CI, 2.26-3.30) and associated sequelae (ie, antepartum hemorrhage, cesarean delivery). Women with TBI were at an increased risk for stillbirth (RR = 2.55; 95% CI, 1.97-3.29) and having a baby large for gestational age (RR = 1.30; 95% CI, 1.09-1.56). Findings persisted after controlling for clinical characteristics. CONCLUSIONS: Risk for adverse pregnancy outcomes, including placental abruption and stillbirth, were increased among women with TBI. Future research is needed to examine the association between TBI and pregnancy outcomes using longitudinal and prospective data and to investigate potential mechanisms that may heighten risk for adverse outcomes.

Antenatal Hospital Use among Deaf and Hard of Hearing Women.

OBJECTIVE: Hearing loss is increasingly prevalent among younger adults, impacting health and health care use. Deaf and hard of hearing (DHH) women have a higher risk of chronic diseases, pregnancy complications, and adverse birth outcomes compared with hearing women. Health care utilization patterns during the perinatal period remain not well understood. The objective of this study was to examine differences in antenatal emergency department and inpatient utilization among DHH and non-DHH women. STUDY DESIGN: We conducted a retrospective cohort study design to analyze 2002 to 2013 Massachusetts Pregnancy to Early Life Longitudinal data to compare antenatal inpatient and emergency department use between DHH (N = 925) and hearing (N = 2,895) women with singleton deliveries. Matching was done based on delivery year, age at delivery, and birth parity in 1:3 case-control ratio. Demographic, socioeconomic, clinical, and hospital characteristics were first compared for DHH mothers and the matched control group using chi-squared tests and t-tests. Multivariable models were adjusted for sociodemographic and clinical characteristics. RESULTS: Among DHH women (N = 925), 49% had at least one emergency department visit, 19% had an observational stay, and 14% had a nondelivery hospital stay compared with 26, 14, and 6%, respectively, among hearing women (N = 28,95) during the antenatal period (all ps < 0.001). The risk of nondelivery emergency department visits (risk ratio [RR] 1.58; p < 0.001) and inpatient stays (RR = 1.89; p < 0.001) remained higher among DHH women compared with hearing women even after adjustment. Having four or more antenatal emergency department visits (7 vs. 2%) and two or more nondelivery hospital stays (4 vs. 0.4%) were more common among pregnant DHH women compared with their controls (all p-values < 0.001). CONCLUSION: The findings demonstrate that DHH women use emergency departments and inpatient services at a significantly higher rate than their hearing controls during the antenatal period. A systematic investigation of the mechanisms for these findings are needed. KEY POINTS: · Antenatal emergency department use is significantly higher among deaf and hard of hearing women.. · Antenatal hospitalizations are significantly higher among deaf and hard of hearing women.. · Hearing loss screening may identify those at risk for adverse pregnancy and birth outcomes..

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.

Examining differences in prescription opioid use behaviors among U.S. adults with and without disabilities.

We aimed to identify differences in prescription opioid-related behaviors between adults with and without disabilities in the U.S. We analyzed data from the 2015-2017 National Survey on Drug Use and Health (128,740 individuals; weighted N of 244,831,740) to examine disability-based differences in (1) reasons and sources of last prescription opioid misuse and, in multivariate models overall and stratified by disability, the likelihood of (2) prescription opioid use, and if used, (3) misuse and prescription opioid use disorder (OUD), overall and stratified by disability. Adults with disabilities were 11% more likely than adults without disabilities to report any past-year prescription opioid use, adjusted for sociodemographic, health, and behavioral health characteristics. However, among adults with any prescription opioid use, which is more common among people with disabilities, likelihood of prescription OUD did not vary by disability status. Pain relief as the reason for last misuse was associated with 18% increased likelihood of prescription OUD, if any use. To reduce risk of opioid misuse among people with disabilities, accessible and inclusive chronic pain management services are essential. Further, the substance use treatment field should provide accessible and inclusive services, and be aware of the need for pain management by many people with disabilities, which may include the use of prescription opioids. These findings highlight essential opportunities for public health and policies to improve access, accommodations, and quality of health and behavioral health care for people with disabilities, and to encourage a holistic perspective of people with disabilities and their needs.

Utilization of HIV testing and counselling services by women with disabilities during antenatal care in Uganda: analysis of 2016 demographic and health survey.

BACKGROUND: HIV testing and counselling during antenatal care (ANC) is critical for eliminating mother-to-child transmission of HIV. We investigated disparity in utilization of HIV testing and counselling services (HTC) between women with and without disabilities in Uganda. METHODS: We conducted a retrospective study using the nationally representative 2016 Uganda Demographic and Health Survey. The study sampled 10,073 women between age 15-49 who had a live birth in the last 5 years. We estimated unadjusted and adjusted odds ratio for receiving pre-test HIV counselling, obtaining an HIV test result, and post-test HIV counselling by disability status using logistic regressions. RESULTS: We found that women with disabilities were less likely to receive pre-test HIV counselling (59.6 vs 52.4), obtain an HIV test result (68.2 vs 61.4), receive post-test HIV counselling (55.5 vs 51.6), and all HTC services (49.2 vs 43.5). From the regression analysis, women with disabilities were less likely to receive pre-test counselling [AOR = 0.83; CI = 0.74, 0.93] and obtain an HIV test result [AOR = 0.88; CI = 0.78, 0.99]. CONCLUSIONS: Our findings revealed that women with disabilities are less likely to receive HTC service during ANC and highlighted the need for disability-inclusive HIV and reproductive health services. Government, non-governmental organizations, and other stakeholders should consider funding inclusive campaigns and identifying other mechanisms for disseminating health information and behavioral interventions to women with disabilities.

The Compounding Effect of Race/Ethnicity and Disability Status on Children's Health and Health Care by Geography in the United States.

OBJECTIVE: The objective of this study was to examine the potential compounding effect of race/ethnicity, and disability status on children's health and health care, stratified by selected geographies. METHODS: We used the 2011/2012 NSCH and the 2012 Boston Survey of Children's Health for our compounded disparity analysis. We used VanderWheel and Knol method to first predict combined risk ratios of race/ethnicity and disability and then compared them with the observed combined risk ratios. RESULTS: We demonstrated that racial/ethnic minority children with disabilities experience additional disparities in health care access outcomes that are greater than the sum of the effects from either characteristic alone. Further, we demonstrate that disparities persist across all selected geographies irrespective of whether children lived in states or metropolitan cities with the best health care systems in the United States. CONCLUSIONS: Despite reform efforts, our study demonstrates that racial/ethnic minority children with disabilities experience a double burden. Given the deleterious compounded disparities, public health and social service programs at all geographical levels should prioritize identifying participants that face this and tailor programs to meet their needs.

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.

Impact of Medical Home on Health Care of Children With and Without Special Health Care Needs: Update from the 2016 National Survey of Children's Health.

Objective The medical home has been promoted as an optimal model of health care delivery for children. The purpose of this study was to examine the association between having access to a medical home and the health care experiences of children with and without special health care needs (SHCN) in the United States. Methods We analyzed data from the 2016 National Survey of Children's Health. We modeled logistic regressions to assess associations of having access to a medical home with health care experiences for 11,392 CSHCN and 38,820 non-CSHCN. Results We found that not having access to a medical home was negatively associated with preventive medical and dental care visits, greater unmet medical and dental needs, and hospital emergency room visits. Additionally, not having access to a medical home was negatively associated with the physical and oral health among CSHCN and oral health among non-CSHCN. However, we found no significant association between improved physical health status and having access to a medical home among non-CSHCN. Conclusions Results from our analysis suggest that having access to a medical home remains key determinant of improved health care experiences by CSHCN and non-CSHCN in the United States. Our findings underscore the need to develop policies and implement a more concerted program to increase access to health care delivered under the medical home model for CSHCN and non-CSHCN. Policymakers, health care administrators and physician groups can use these findings to inform future policy decisions and service delivery reforms.

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.

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.

Disparities in Adverse Preconception Risk Factors Between Women with and Without Disabilities.

OBJECTIVE: The objective of this study was to compare the prevalence of select preconception health indicators among women with and without disabilities. METHODS: 2010 Behavioral Risk Factor Surveillance System data were used to estimate the prevalence of health behaviors, health status indicators, and preventive health care among non-pregnant women ages 18-44 years with (N = 8370) and without (N = 48,036) disabilities. Crude percentages were compared with Chi square statistics. Multivariable logistic regressions adjusted for socio-demographic factors. RESULTS: Women with disabilities were more likely than women without disabilities to currently smoke (30.5 vs. 14.5 %, p < 0.0001) and less likely to exercise in the past month (67.1 vs. 79.8 %, p < 0.0001). Heavy drinking was similar in the two groups (4.4 vs. 4.5 %, p = 0.9). Health status indicators were worse among women with disabilities, with 35.0 % reporting fair/poor health and 12.4 % reporting diabetes, compared with 6.7 and 5.6 %, respectively, among women with no disabilities (p < 0.0001 for both). Frequent mental distress, obesity, asthma, and lack of emotional support were also higher among women with disabilities compared with their non-disabled counterparts. Women with disabilities were more likely to receive some types of preventive care, (HIV), but less likely to receive others (recent dental cleaning, routine checkup). Disparities in health behaviors and health status indicators between the two groups remained after adjusting for socio-demographic factors. CONCLUSION: Women with disabilities at reproductive age are more vulnerable to risk factors associated with adverse pregnancy outcomes compared to their counterparts without disabilities. Our findings highlight the need for preconception health care for women with disabilities.

Maternal Characteristics, Pregnancy Complications, and Adverse Birth Outcomes Among Women With Disabilities.

OBJECTIVES: The objective of this study is to describe the maternal characteristics, pregnancy complications, and birth outcomes among a representative sample of Rhode Island women with disabilities who recently gave birth. METHODS: Data from the 2002-2011 Rhode Island Pregnancy Risk Assessment Monitoring System survey were analyzed. RESULTS: Approximately 7% of women in Rhode Island reported a disability. Women with disabilities reported significant disparities in their health care utilization, health behaviors, and health status before and during pregnancy and during the postpartum period. Compared with nondisabled women, they were significantly more likely to report stressful life events and medical complications during their most recent pregnancy, were less likely to receive prenatal care in the first trimester, and more likely to have preterm births (13.4%; 95% CI, 11.6-15.6 compared with 8.9%; 95% CI, 8.5-9.3 for women without disabilities) and low-birth-weight babies (10.3%; 95% CI, 9.4-11.2 compared with 6.8%; 95% CI, 6.8-6.9). There was no difference in the rates of cesarean section between women with and without disabilities. CONCLUSIONS: These findings support the need for clinicians providing care to pregnant women with disabilities to be aware of the increased risk for medical problems during pregnancy and factors that increase the risk for poor infant outcomes.

Prevalence and risk factors for postpartum depression symptoms among women with disabilities.

The adverse consequences of postpartum depression on the health of the mother and her child are well documented. However, there is little information on postpartum depression among mothers with disabilities. This study examines the patterns of depression and depressive symptoms before, during and after pregnancy and the association between depression before and during pregnancy and postpartum depression symptomatology (PPD) among women with and without disabilities. Data from the 2009-2011 Rhode Island Pregnancy Risk Assessment Monitoring System (PRAMS) were analyzed in 2013. Almost 30% (28.9%; 95% CI 22.8-35.8) of mothers with disabilities reported often or always feeling down, depressed or sad after childbirth compared to 10% of those without disabilities (95% CI 8.9-11.3). Compared to other women in the study, women with disabilities had a greater likelihood for PPD symptoms (RR 1.6, 95% CI 1.1-2.2) after accounting for sociodemographics, maternal characteristics related to PPD, and depression before and during pregnancy. Adjusting for other covariates, self-reported prenatal diagnosis of depression was not associated with symptoms of PPD and depression during pregnancy was marginally associated with PPD symptomatology for women with disabilities. Women with disabilities are at a greater risk of experiencing symptoms of postpartum depression than other women. Screening for PPD among new mothers with disabilities and timely referral of those with PPD diagnosis are vital to the health of mothers with disabilities and their children.

Multiple Chronic Condition Emergency Department Visits Among U.S. Adults: Disparities at the Intersection of Intellectual and Developmental Disabilities Status and Race or Ethnicity.

Background: The study aims to examine the risk of multiple chronic condition (MCC)-related emergency department (ED) visits, MCC-related hospitalization following the ED visit, and mortality after MCC-related ED visits among adults with intellectual and developmental disabilities (IDD), adults compared with nondisabled adults by race and ethnicity, using the 2020 Healthcare Cost and Utilization Project Nationwide Emergency Department Sample. Methods: We identified IDD adults using ICD-10-CM codes, extracting 296,394 nondisabled adults and 99,538 IDD adults, of which 67,771 are white, 19,164 are black, 10,667 are Latinx, and 1936 are other race or multiple race. The control group of nondisabled adults was age-matched and sex-matched in a 1:3 case-control ratio. We conducted multilevel Poisson regression models for the binary-dependent variables and adjusted for covariates, including sociodemographic and hospital characteristics. Results: The results show that across all racial/ethnic groups, individuals with IDD have significantly higher rates of MCC-related ED visits, hospitalizations, and deaths compared with nondisabled. Moreover, the disparities are more pronounced for individuals from racial/ethnic minority groups. Black and Latinx individuals with IDD have significantly higher rates of MCC-related ED visits and poor outcomes than their white counterparts with and without IDD. Conclusions: The findings from this study highlight significant racial and ethnic disparities in the risk of MCC-related ED visits, hospitalization following the ED visit, and mortality through the ED among IDD adults. This underscores the importance of adopting a multifaceted approach that addresses the social determinants of health, enhances access to health care, improves quality of care, and enhances care coordination.

Perinatal health framework for people with intellectual disability.

We propose a framework for guiding research on perinatal health in people with intellectual disability (ID). We developed this framework based on the perinatal health framework for people with physical disabilities, American Association on Intellectual and Developmental Disabilities conceptual framework of human functioning, disability reproductive justice framework, trauma-informed care, and socio-ecological model. The framework reflects health outcomes of birthing people with ID and their infants that result from interactions of factors across the life course at policy (health, social, and disability policies), community (attitudes, social and physical environment), institutional (health care delivery-related factors, access to information/resources), interpersonal (social determinants of health/histories of trauma, social support, interactions with service-providers), and individual levels (demographics, intellectual functioning, adaptive behavior, health conditions, genetic factors, psychosocial factors, health behaviors). This framework will facilitate research to identify factors leading to perinatal health disparities in people with ID and development and evaluation of resources to address them.

Outcomes of Person-Centered Planning in Medicaid Home- and Community-Based Services.

BACKGROUND AND OBJECTIVES: Person-centered planning (PCP) allows recipients of home- and community-based service (HCBS) to plan services and supports according to their preferences and needs. The extent to which HCBS systems engage in PCP and evidence for the relationship between PCP and beneficiary outcomes are limited. We examine the prevalence of PCP among HCBS recipients and the relationship between PCP and person-reported outcomes. RESEARCH DESIGN AND METHODS: We used the 2018-2019 National Core Indicators-Aging and Disability survey, collected among adult Medicaid HCBS recipients in 12 states (n = 5,849). We examined 2 general PCP measures (1 on decision making and another on whether service plans reflected preferences/choices). We also constructed a scale to assess the fidelity of recipients' service planning meeting to the PCP process. Outcomes included unmet service needs and community living (i.e., participation, control, and satisfaction). We examined recipient characteristics associated with PCP and used adjusted logistic regression models to assess the relationship between PCP and outcomes. RESULTS: About 72% of HCBS recipients were involved in decision making, 72% reported their service plan reflected their preferences/choices, and 47% had meetings that scored "high fidelity" on the PCP fidelity scale. PCP measures were consistently related to lower likelihood of unmet service needs and greater likelihood of experiencing community living outcomes. DISCUSSION AND IMPLICATIONS: Findings suggest PCP is important for adequately meeting service needs and ensuring community living among HCBS beneficiaries. Additional standardized measures should be developed to facilitate quality improvement and accountability for delivering person-centered HCBS.

Family Caregivers' Attitudes and Perspectives About the Sexual and Reproductive Health of Women With Intellectual and Developmental Disabilities: An Online Survey.

Although sexual and reproductive health is critically important for women with intellectual and developmental disabilities (IDD), there is limited research elucidating the role of family caregivers in assisting women with IDD access sexual and reproductive health services and information. Understanding the family caregivers' attitudes and perspectives is essential to improving access to sexual and reproductive health services and information for women with IDD. A cross-sectional online survey of family caregivers of women with IDD was administered between June and October 2018. Quantitative analysis was conducted for closed-ended responses, and qualitative analysis was conducted for open-ended responses. The analytic sample included 132 family caregivers. Most participants were parents and reported being closely involved in their family member's access to sexual and reproductive health services and information. Although most participants expressed that sexual and reproductive health services and information are essential for women with IDD, qualitative analysis of participants' open-ended responses revealed both supportive and restrictive attitudes and perspectives on sexual and reproductive health services and information for women with IDD. Supportive attitudes and perspectives included (1) "knowledge is power;" (2) supported decision-making; and (3) protection against sexual abuse. Restrictive attitudes and perspectives included (1) dependent on the individual; (2) lack of autonomy; and (3) placing responsibility on disability. Greater attention from policymakers and practitioners to systems-level changes, including universal and accessible sexual education for women with IDD, supported decision-making, and sexual abuse prevention measures, are urgently needed.