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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.

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.

While an increasing number of girls and women are being identified with autism, we know little about the health of reproductive-aged autistic women. Our objectives were to (1) describe health characteristics of reproductive-aged autistic women who could potentially become pregnant and (2) compare these characteristics with those of non-autistic women. We conducted a population-based cross-sectional study using 2017-2018 administrative health data from Ontario, Canada. A total of 6,870 fifteen- to 44-year-old autistic women were identified and compared with 2,686,160 non-autistic women. Variables of interest included social determinants of health (neighborhood income, residential instability, material deprivation, rurality), health (co-occurring medical and psychiatric conditions, use of potentially teratogenic medications, history of assault), and health care factors (continuity of primary care). Overall, reproductive-aged autistic women had poorer health compared with non-autistic women, including increased rates of material deprivation, chronic medical conditions, psychiatric conditions, use of potentially teratogenic medications, and history of assault. These findings highlight the need for health interventions tailored to the needs of reproductive-aged autistic women.

Barriers to health care access can greatly affect one's health status. Research shows that U.S. adults with intellectual and developmental disabilities (IDD) have poor health and face barriers such as long waits for appointments. However, whether barriers differ by race and ethnicity has not been examined. We conducted a secondary data analysis using the 2002-2011 Medical Expenditure Panel Survey dataset, and compared perceived barriers of community-living U.S. adults with IDD in three racial and ethnic groups (White, Black, and Latinx). Specifically, we examined the top reasons for not having usual source of care, delaying or foregoing medical care. For Black and Latinx adults with IDD, the most-mentioned reasons for not having usual source of care, delaying or foregoing medical care were "don't like/don't trust doctors," "don't use doctors," and "don't know where to get care." In comparison, the White adults with IDD group's biggest perceived barriers were location and insurance related. All groups cited that being unable to afford care was a top reason for delaying or foregoing care. Policies/interventions to improve health care access in racial/ethnic minorities with IDD must first address the topic of developing trust between patients and the health professions. Insurance and the rising costs of care are also key areas that need attention.

Understanding the pregnancy experiences of racial and ethnic minority women with intellectual and developmental disabilities (IDD) is critical to ensuring that policies can effectively support these women. This research analyzed data from the 1998-2013 Massachusetts Pregnancy to Early Life Longitudinal (PELL) data system to examine the racial and ethnic disparities in birth outcomes and labor and delivery charges of U.S. women with IDD. There was significant preterm birth disparity among non-Hispanic Black women with IDD compared to their non-Hispanic White peers. There were also significant racial and ethnic differences in associated labor and delivery-related charges. Further research, examining potential mechanisms behind the observed racial and ethnic differences in labor and delivery-related charges in Massachusetts' women with IDD is needed.

To better understand disparities between Latino and White children with autism or other developmental disabilities (ASD/DD), we examined whether Latino ethnicity predicted the number of specialty care services received by children with severe functional limitations depending on medical providers' responses to parents' initial concerns about their child's development. Through linkage of the Pathways and NS-CSHCN datasets, we found ethnic disparities in the receipt of specialty services associated with providers' responsiveness to parent-reported concerns among children with ASD/DD. Among children with significant functional limitations, Latino children whose parents received passive/reassuring responses from their providers were less likely to receive specialty services than White children with ASD/DD. Providers' guidance to parents may be a promising point of intervention for future disparity reduction efforts. [This manuscript was presented at the annual Gatlinburg Conference, San Diego, CA (April, 2018).]

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., Author(s): Ilhom Akobirshoev [sup.1] , Susan Parish [sup.2] , Monika Mitra [sup.1] , Robbie Dembo [sup.1] Author Affiliations: (Aff1) grid.253264.4, 0000 0004 1936 9473, Lurie Institute for Disability Policy, Heller [...]

Purpose: The aim of the study was to provide an overview of population science as applied to speech and language disorders, illustrate data sources, and advance a research agenda on the epidemiology of these conditions. Method: Computer-aided database searches were performed to identify key national surveys and other sources of data necessary to establish the incidence, prevalence, and course and outcome of speech and language disorders. This article also summarizes a research agenda that could enhance our understanding of the epidemiology of these disorders. Results: Although the data yielded estimates of prevalence and incidence for speech and language disorders, existing sources of data are inadequate to establish reliable rates of incidence, prevalence, and outcomes for speech and language disorders at the population level. Conclusions: Greater support for inclusion of speech and language disorder-relevant questions is necessary in national health surveys to build the population science in the field.

There is a dearth of existing research on the treatment of reproductive cancers among women with intellectual and developmental disabilities (IDD). This study analyzed the 2010 Healthcare Cost and Utilization Project Nationwide Inpatient Sample and compared the prevalence of reproductive cancer treatment hospitalization discharges among women with and without IDD. Discharges linked to women with IDD had higher incidences of cancer of the uterus and lower prevalence of cancer of the cervix. Moreover, discharges linked to women with IDD indicated these women were younger, had longer hospital stays, and were more likely to have public insurance coverage. Therefore, further research and targeted interventions to increase cancer prevention and screening are urgently needed.

Parents with disabilities and their families experience pervasive inequities within the child welfare system. However, existing conceptual frameworks do not adequately explain or address the unique needs and experiences of parents with disabilities and their families involved with the child welfare system. Accordingly, we present a conceptual framework that incorporates empirical findings from existing literature while integrating and expanding extant frameworks and models. The conceptual framework, which is aimed at being a starting point from which to investigate child welfare system inequities experienced by disabled parents, includes interrelated factors measured at the contextual, institutional, and individual levels. The paper discusses areas for further research, challenges for researchers, and implications for reducing child welfare system inequities. Parents with disabilities are more likely to be involved with the child welfare system, have their parental rights terminated, and receive inadequate services and supports from the child welfare system, compared to other parents. This paper offers a conceptual framework that identifies factors that impact the inequities experienced by disabled parents who are involved with the child welfare system. Researchers can use the conceptual framework to study the reasons that parents with disabilities have worse child welfare system outcomes than other parents. Policymakers and child welfare professionals can use the conceptual framework to identify ways to prevent parents with disabilities from being unnecessarily involved with the child welfare system and ensure that parents with disabilities who are involved with the child welfare system are treated fairly. [ABSTRACT FROM AUTHOR]

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.

The authors examined food insecurity in households including children with disabilities, analyzing data from the 2004 and 2008 panels of the Survey of Income and Program Participation, which included 24,729 households with children, 3,948 of which had children with disabilities. Logistic regression models were used to estimate the likelihood of food insecurity after adjusting for adult disability status, income, and other sociodemographic factors. Compared to other households with children, those including children with disabilities were more likely to report household food insecurity of any kind, very low household food security, and child food insecurity. Families raising children with disabilities were also more likely to receive Supplemental Nutrition Assistance Program benefits. These results suggest that children with disabilities face an increased risk of experiencing food insecurity and that there is a pressing need to improve the safety net system for these children.

Objective: This article reports on the acceptability and results from an evaluation of an empirically supported practice, The Incredible Years, tailored to parents of children with autism spectrum disorder (ASD). Methods: Two groups of parents (N = 17) participated in a mixed methods test with no comparison group of the 15-week intervention. Data were collected at baseline, posttest, and on a weekly basis. Results: Acceptability and attendance were high, attrition was modest, and parent stress decreased significantly after program completion. Parents highlighted several barriers to their success in the program, including difficulty applying some program content (e.g., time-out for noncompliance) to children with sensory or self-regulation challenges. However, participants reportedly enjoyed the play-based approach of the program, as well as opportunities for social support and peer learning. Conclusion: The Incredible Years is a promising intervention for parents raising preschoolers with ASD. A randomized controlled trial is needed to rigorously test the intervention.

Racial and ethnic health disparities are a pervasive public health problem. Emerging research finds similar health disparities among people with intellectual and developmental disabilities (IDD) compared to nondisabled adults. However, few studies have examined racial and ethnic health disparities among adults with IDD. Using national data, we examined racial and ethnic disparities in health status among adults with IDD, and investigated differences in health status between adults with IDD and nondisabled adults within each racial and ethnic group. We found that Latino and Black adults with IDD had worse health outcomes compared to White adults with IDD, and Latino and Black adults with IDD had worse health outcomes than nondisabled adults from the same racial and ethnic group.

This article reports on the feasibility of implementing an existing empirically based program, "The Incredible Years," tailored to parents of young children with autism spectrum disorder. Parents raising preschool-aged children (aged 3-6?years) with autism spectrum disorder (N?=?17) participated in a 15-week pilot trial of the intervention. Quantitative assessments of the program revealed fidelity was generally maintained, with the exception of program-specific videos. Qualitative data from individual post-intervention interviews reported parents benefited most from child emotion regulation strategies, play-based child behavior skills, parent stress management, social support, and visual resources. More work is needed to further refine the program to address parent self-care, partner relationships, and the diverse behavioral and communication challenges of children across the autism spectrum. Furthermore, parent access and retention could potentially be increased by providing in-home childcare vouchers and a range of times and locations in which to offer the program. The findings suggest "The Incredible Years" is a feasible intervention for parents seeking additional support for child- and family-related challenges and offers guidance to those communities currently using "The Incredible Years" or other related parenting programs with families of children with autism spectrum disorder.

The aim of this study was to determine if racial and ethnic disparities in the quality of provider interaction have changed between 2006 and 2010 for children with developmental disabilities and autism spectrum disorders (ASD). Data from the 2005/2006 and 2009/2010 National Survey of Children With Special Health Care Needs were analyzed. Results show that racial and ethnic disparities in the quality of provider interactions were substantial in both 2005/2006 and 2009/2010. Black and Latino parents were significantly less likely than White parents to report that their provider spent enough time with their child and was sensitive to the family's values. Racial and ethnic disparities in health care quality were found to be unchanged over time. Research and policy implications are discussed.

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., Author(s): Monika Mitra [sup.1] , Susan L. Parish [sup.2] , Ilhom Akobirshoev [sup.1] , Eliana Rosenthal [sup.2] , Tiffany A. Moore Simas [sup.3] Author Affiliations: (Aff1) 0000 0004 1936 9473, [...]

Purpose: The aim of the study was to provide an overview of population science as applied to speech and language disorders, illustrate data sources, and advance a research agenda on the epidemiology of these conditions. Method: Computer-aided database searches were performed to identify key national surveys and other sources of data necessary to establish the incidence, prevalence, and course and outcome of speech and language disorders. This article also summarizes a research agenda that could enhance our understanding of the epidemiology of these disorders. Results: Although the data yielded estimates of prevalence and incidence for speech and language disorders, existing sources of data are inadequate to establish reliable rates of incidence, prevalence, and outcomes for speech and language disorders at the population level. Conclusions: Greater support for inclusion of speech and language disorder-relevant questions is necessary in national health surveys to build the population science in the field., The use of population-based studies has long been established as a valuable corollary to patient-based studies in many fields of health care; however, in the field of speech and language [...]

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 ([beta] = 2.94, S.E. = 1.12, p < .01) and positive family relationships ([beta] = 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., Author(s): Morgan K. Crossman [sup.1] , Marji Erickson Warfield [sup.2] , Milton Kotelchuck [sup.1] , Penny Hauser-Cram [sup.3] , Susan L. Parish [sup.4] Author Affiliations: (Aff1) 000000041936754X, grid.38142.3c, General Academic [...]

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., Author(s): Thomas Sannicandro [sup.1] , Susan L. Parish [sup.1] , Esther Son [sup.1] [sup.2] , Robyn M. Powell [sup.1] Author Affiliations: (1) 0000 0004 1936 9473grid.253264.4Lurie Institute for Disability Policy, [...]

Purpose: To provide estimates for the prevalence of parent-reported speech-language difficulties in U.S. children, and to describe the levels of health care access and material hardship in this population. Method: We tabulated descriptive and bivariate statistics using cross-sectional data from the 2007 and 2011/2012 iterations of the National Survey of Children's Health, the 2005/2006 and 2009/2010 iterations of the National Survey of Children with Special Health Care Needs, and the 2004 and 2008 panels of the Survey of Income and Program Participation. Results: Prevalence estimates ranged from 1.8% to 5.0%, with data from two of the three surveys preliminarily indicating increased prevalence in recent years. The largest health care challenge was in accessing care coordination, with 49%-56% of children with parent-reported speech-language difficulties lacking full access. Children with parent-reported speech-language difficulties were more likely than peers without any indications of speech-language difficulties to live in households experiencing each measured material hardship and participating in each measured public benefit program (e.g., 20%-22% experiencing food insecurity, compared to 11%-14% of their peers without any indications of speech-language difficulties). Conclusions: We found mixed preliminary evidence to suggest that the prevalence of parent-reported speech-language difficulties among children may be rising. These children face heightened levels of material hardship and barriers in accessing health care.

The purpose of this study was to examine the risk and protective factors of peer victimization among young children with disabilities. This study analyzed data from the Pre-Elementary Education Longitudinal Study (n =1,130) to test a path model that included child, family, and school characteristics at Year 1 and peer-relation difficulties and social skills at Year 2 to predict peer victimization among children with disabilities at Year 3. Children's family and school factors had direct effects on children's poorer social behaviors and language development, which had direct effects on peer-relation difficulties, which in turn increased peer victimization. Children's prosocial skill development, facilitated by children's receptive language ability, protects children with disabilities from peer victimization. Intervention implications are discussed.

Women with intellectual disability do not receive cervical and breast cancer screening at the same number as women without disabilities. Numerous barriers to receipt of screening have been reported by individuals with intellectual disability, paid caregivers, nurses, and other medical professionals. This study utilized semi-structured qualitative interviews to assess barriers to care from the perspective of female familial caregivers (n = 32). Caregivers reported a number of barriers to care including not knowing or not believing the exam was needed for their family member and discomfort during exams. Caregivers also described enablers to screening. The most common response to what enabled the woman with an intellectual disability to receive the exam was preparation prior to the exam. A significant portion of the sample of family caregivers lacked knowledge about the need for cervical and breast cancer screening by women with intellectual disability. Policy recommendations are discussed.

We examined the association between state Medicaid spending for children with disabilities and the financial burden reported by families of children with autism. Child and family data were from the 2005-2006 National Survey of Children with Special Health Care Needs (n = 2,011 insured children with autism). State characteristics were from public sources. The 4 outcomes included any out-of-pocket health care expenditures during the past year, expenditure amount, expenditures as a proportion of family income, and whether additional income was needed to care for a child. We modeled the association between state per capita Medicaid spending for children with disabilities and families' financial burden, controlling for child, family, and state characteristics. Overall, 78% of families raising children with autism had health care expenditures for their child for the prior 12 months; 42% reported expenditures over $500, with 34% spending over 3% of their income. Families living in states with higher per capita Medicaid spending for children with disabilities were significantly less likely to report financial burden. There is a robust relationship between state Medicaid spending for children with disabilities and the financial burdens incurred by families raising children with autism.

The authors examined food insecurity in households including children with disabilities, analyzing data from the 2004 and 2008 panels of the Survey of Income and Program Participation, which included 24,729 households with children, 3,948 of which had children with disabilities. Logistic regression models were used to estimate the likelihood of food insecurity after adjusting for adult disability status, income, and other sociodemographic factors. Compared to other households with children, those including children with disabilities were more likely to report household food insecurity of any kind, very low household food security, and child food insecurity. Families raising children with disabilities were also more likely to receive Supplemental Nutrition Assistance Program benefits. These results suggest that children with disabilities face an increased risk of experiencing food insecurity and that there is a pressing need to improve the safety net system for these children., As of 2010, nearly a fifth of the U.S. population (18.7%; 56.7 million people) had some level of disability, and 12.6% (38.3 million people) had a severe disability (Brault, 2012). [...]

Understanding the financial well-being of single mothers who care for children with developmental disabilities is important to ensure that public policies can be effectively targeted to support these vulnerable families. The authors analyze data from the Survey of Income and Program Participation to describe income poverty, asset poverty, income, net worth, and liquid assets of U.S. single, working-age mothers (n = 242) of children and adult children with developmental disabilities. The well-being of these mothers was compared to the situation of married mothers of children with developmental disabilities (n = 345) and of single mothers who did not have children with developmental disabilities (n = 6,547). Compared with both married mothers of children with developmental disabilities and single mothers without children with developmental disabilities, single mothers of children with developmental disabilities had markedly worse financial well-being across a range of income- and asset-based measures. Single mothers caring for children with developmental disabilities face adverse financial well-being as compared with other mothers. Policy makers should consider targeted measures to improve the financial well-being of these parents.

We examined racial and ethnic disparities in quality of care for children with autism and other developmental disabilities and whether disparities varied for children with autism compared to children with other developmental disabilities. Analyzing data from the National Survey of Children with Special Health Care Needs (N = 4,414), we compared Black and Latino children to White children. We found racial and ethnic disparities on 5 of 6 quality outcomes. The interaction between race and disability status indicated that disparities in quality indicators were exacerbated among families of children with autism. These analyses suggest that children with autism, particularly those who are Latino and Black, face greater challenges in receiving high-quality health care.

This study examines access to, utilization of, and quality of health care for Latino children with autism and other developmental disabilities. We analyze data from the National Survey of Children with Special Health Care Needs (N = 4,414 children with autism and other developmental disabilities). Compared with White children, Latino children with autism and other developmental disabilities had a consistent pattern of worse health care access, utilization, and quality. We then test mediation models to determine if health care quality mediates the relationship between ethnicity and health care utilization disparities. Three of four quality indicators (provider does not spend enough time with child, provider is not culturally sensitive, and provider does not make parent feel like a partner) were significant mediators. These analyses suggest that interventions targeted at improving providers' cultural sensitivity and behavior during the clinical encounter may reduce disparities in the health care utilization of Latino children with autism and other developmental disabilities.