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Introduction: Extensive literature has investigated the prenatal risk factors of developmental delay in children, with evidence highlighting the impact of prenatal health, mental health, and behavioural factors. While a deficit discourse has underscored Indigenous health research and policies, strengths-based approaches provide an opportunity to reframe this discourse, to illustrate and celebrate the strength and resilience of Australian Indigenous families. As such, this study aimed to identify the protective impact of healthy pregnancy and lifestyle in mothers on developmental delay in Indigenous Australian children; and whether it varies by child birthweight adjusted for gestational age. Further, we also tested whether child birthweight for adjusted gestational age mediates the association between a healthy pregnancy and lifestyle in mothers and developmental delay in their Indigenous offspring., Methods: Strength-based analysis was conducted using data from 8 longitudinal waves of LSIC study in Australia. Random-effect models were used to longitudinally measure the impact of maternal healthy pregnancy and lifestyle on developmental delays in their children between 2008 and 2018. A composite score (ranging from 0 to 3, score = 3 refers to most healthy pregnancy) was created for a healthy pregnancy and lifestyle variable using three criteria - (1) a lack of medical conditions, (2) no substance use including smoking/alcohol/illicit drugs, and (3) intake of iron/folic acid during pregnancy. All models were adjusted for potential covariates., Results: Of the 780 mother-child dyads analysed, 65.4% of mothers reported healthy pregnancy and lifestyle; while 73.5% of children born with a recommended appropriate birthweight adjusted for gestational age, and 91.4% reported no developmental delays. In children born in the recommended range of appropriate birthweight adjusted for gestational age, healthy pregnancy in mothers (most healthy, aOR: 4.76, 95% CI: 1.12-20.18; and 2nd most healthy, aOR: 4.02, 95% CI: 1.09-14.83) was protective against development delay compared to maternal unhealthy pregnancy. Living in remote areas (vs. major city, and regional) was also found to be protective against developmental delay in those who were born within the recommended range of birthweight adjusted for gestational age. Further, the current study found that child birthweight for adjusted gestational age does not have any mediating effect on the association between healthy pregnancy in mothers and developmental delay in their children., Conclusion: This strengths-based study suggests healthy pregnancy in mothers should be advocated to prevent developmental delay in their offspring in the Australian Indigenous population. The findings also found living in remote areas has a protective effect against developmental delay in Indigenous children who born within the recommended range of birthweight adjusted for gestational age. These findings have implications for challenging and reframing the deficit discourse surrounding Indigenous Australian health research and policymaking. Further studies are needed to investigate the positive relationship between Indigenous Australians' health and social and emotional well-being (SEWB) and their connection to their country and culture., Competing Interests: Declarations. Ethics approval and consent to participate: The study was approved by the Footprints in Time Steering Committee, and the study’s content and fieldwork were approved by the Human Research Ethics Committee of the Australian Institute of Aboriginal and Torres Strait Islander Studies (Ethics code: AIATSIS). The authorship team has been granted access to LSIC data for the study and publication by the Australian Data Archive Dataverse (Application reference no. 440644). All the participants who took part in the study provided written informed consent. Consent for publication: Not applicable. Competing interests: The authors declare no competing interests., (© 2024. The Author(s).)

Objectives: While early diagnosis is fundamental to the development of children with developmental disabilities (DD), limited attention has been paid to immigrant parents' experience of early encounters with systems when they begin seeking supports for their children with DD. This study aimed to contribute to better understanding of immigrant parents' experiences of early encounters with services for families and children with suspected or diagnosed DD., Design: A longitudinal, qualitative approach was adopted. Over 12 months, multiple interviews were conducted with four immigrant families with children aged between two and four years who were attending a mobile playgroup offering early learning supports for children with suspected or diagnosed DD in communities with low access to formal supports. During the first three months of the study, families were accompanied by the first author on weekly visits to the playgroup. Participant observations and informal discussions with staff delivering early intervention supports via the playgroup provided further insight into families' initial and on-going encounters with services and supports. During the remaining nine months, multiple interviews were conducted with participating families, to document their on-going experiences and encounters with medical practitioners and therapists., Results: Thematic analysis of data generated four key themes: Initial encounters with medical professionals, Confusion and 'missed' diagnosis, Gaps in understanding, collaboration and communication, and Families' desire to learn and implement strategies., Conclusion: Families made concerted efforts to locate appropriate supports. They also faced barriers including a lack of openness and genuine consultation, particularly in their encounters with health professionals. These barriers resulted in a level of mistrust and detachment from formalised supports. Results highlight the critical importance for health professionals of 'tuning into' family concerns through relationship-based approaches, in order to establish shared understanding and mutual respect between professionals and families, particularly for immigrant families seeking support for their young children.

Transition outcomes for Black youth with intellectual and developmental disabilities are especially dire, lagging even further behind already poor outcomes among their White peers. Self-determination is a key factor in predicting better outcomes, but it is unclear how self-determination is fostered or hindered within the transition process for Black youth and their families. This study used the DisCrit framework to analyze interview data from Black students with intellectual and developmental disabilities and their parents regarding self-determination and effective transition services. Analysis resulted in four major themes: historical undertones, proxies for racial bias, spacialization of racialization, and interest convergence. Implications for future research, policy, and practice are discussed., Competing Interests: Declaration of conflicting interestsThe author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Objective: Early diagnosis and social support postdiagnosis (i.e., family involvement) can lead to improved outcomes for children with autism spectrum disorder (ASD) and other developmental disorders. Children of minority ethnic and racial groups are typically diagnosed later in childhood compared with White children, contributing to disparities in outcomes. Research has not yet explored family involvement during comprehensive developmental evaluations nor accounted for cross-cultural differences in family roles and involvement. This qualitative study sought to characterize the nature and impact of family involvement during the developmental evaluation process among racially and ethnically marginalized mothers of children with developmental delays and possible ASD., Methods: Mothers (N = 27) of children who had a positive autism screen during their 18- or 24-month well-child visit but did not receive an ASD diagnosis after comprehensive developmental evaluation participated in individual semi-structured interviews exploring experiences with developmental screening, related services, and family involvement/social support. Qualitative data were transcribed, coded, and analyzed using applied thematic analysis. Data were stratified by partner status (i.e., partnered vs. nonpartnered) to examine differences in support and family involvement across varying family compositions., Results: Three qualitative themes emerged: (1) mothers sought family involvement when making decisions about pursuing developmental evaluations, (2) family involvement affected mothers' navigation of logistical challenges, and (3) mothers involved family members for emotional support. Differences by partner status emerged in themes 1 and 2., Conclusion: Findings highlight benefits of and potential approaches to harnessing family involvement to support parents' navigation of the developmental evaluation process and ultimately improve child outcomes., Competing Interests: The authors declare no conflict of interest., (Copyright © 2024 Written work prepared by employees of the Federal Government as part of their official duties is, under the U.S. Copyright Act, a “work of the United States Government” for which copyright protection under Title 17 of the United States Code is not available. As such, copyright does not extend to the contributions of employees of the Federal Government.)

A review of the literature shows that racial and ethnic minority children (eg, African American, Asian, and Hispanic) received diagnoses for developmental concerns later in life compared with their age-matched white counterparts. Research has also documented disparities in access to and receipt of health care services among children with developmental concerns as compared with children with other disabilities., Objectives: We examined health care providers' (HCPs') responses to parents' developmental concerns about their children. We looked at the association with race, ethnicity, gender, rurality, and time to diagnosis., Methods: All data were secondary and derived from the Centers for Disease Control and Prevention's Survey of Pathways to Diagnosis and Services. Participants consisted of 1321 parents of children who had received early intervention services as reported by respondents' data collected in 2011., Results: From a nationally representative sample of families receiving early intervention services, 76% were white, 10% were African American, 3% were Asian, 5% were Native American, and 9% were Hispanic. Families who were Hispanic were more likely to have received only a delaying response from HCPs. The average time to a developmental delay diagnosis was 5 months longer for families who received a delaying HCP response., Conclusions: Families who were Hispanic or who were from rural areas were most likely to receive a delayed HCP response; for parents who received a delayed HCP response, a developmental delay diagnosis took 5 months longer than for families from the other groups listed.

Background: Mitochondrial encephalomyopathy caused by bi-allelic deleterious variants in TARS2 is rare. To date, only two pedigrees were reported in the literature and the connection between the gene and disease needs further study., Case Presentation: We report one infant who presented with limb hypertonia, epilepsy, developmental delay, and increased serum lactate from a non-consanguineous Chinese family. Whole-genome sequencing was performed to help to underlie the cause. We identified compound heterozygous variants c.470C > G, p.Thr157Arg and c.2143G > A, p.Glu715Lys in TARS2 and the variants were confirmed by Sanger sequencing. The patient was diagnosed with combined oxidative phosphorylation deficiency 21 according to the Online Mendelian Inheritance in Man (OMIM) database based on the clinical data and the deleterious effect of the two variants in TARS2 predicted by in silico tools., Conclusions: We presented one case diagnosed with combined oxidative phosphorylation deficiency 21 based on clinical characteristics and genetic analysis. This is the first case in China and the fourth case in the world based on our document retrieval. This study facilitates the understanding of combined oxidative phosphorylation deficiency disease and demonstrates that the next-generation sequencing has a high potential to study inherited disease with high phenotypic heterogeneity and genetic heterogeneity including mitochondrial diseases such as combined oxidative phosphorylation deficiency.

Background: Early life stress has enduring effects on physical and mental health. Hair cortisol concentrations (HCCs) reflect exposures to contextual stressors in early life, but are understudied in preschool children., Methods: Hair samples from children (N = 693) during clinic visits (CVs) scheduled at 1-4 years (CV1-CV4) were measured using validated assay methods for HCC., Results: HCCs were highest at CV1 and decreased at CV2-CV4, with no sex differences. Black children had higher HCC than White/other children; these differences persisted even after adjusting for socioeconomic factors. Bivariable analyses showed significant effects on HCC for Black race, with specific demographic and psychosocial factors at different ages. Multivariable analyses showed that higher HCC at CV1 were associated with Black race and male sex; at CV2 with Black race, lower maternal self-esteem, socioeconomic adversity, and the child's risk for developmental delay; at CV3 with Black race; at CV4 with maternal depression and the child's prior HCC values., Conclusions: HCCs were higher in Black children than White/other races; differences were related to maternal factors, socioeconomic adversity, and the child's risk for developmental delay. Public health measures to reduce disparities between Blacks and other races must also consider the long-term effects of chronic stress in early life.

Background: Adults with intellectual and/or developmental disabilities (IDD) experience health inequities, and those who also identify as a member of an ethnic minority group face additional health inequities. In the United States, a majority of adults with IDD continue to be supported by family caregivers making their health equity also important. The purpose of this study was to explore how Native American adults with IDD and their family caregivers experience health and wellness., Method: This community-engaged research was guided by a Community Advisory Board (CAB) with study participants completing a Photovoice project., Results: Participants identified individual, family and community level influences on health and wellness including the importance of participation in meaningful activities and connection to culture., Conclusions: In order to address health inequities, more research is needed to understand health and wellness from the unique perspectives of individuals with IDD and those from racial and ethnic minority groups., (© 2019 John Wiley & Sons Ltd.)

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.

Maternal psychosocial stress during pregnancy can adversely influence child development, but few studies have investigated psychosocial stress during the postpartum period and its association with risk of toddler developmental delays. Moreover, given the expanding diversity of the U.S. population, and well-documented health and stress disparities for racial and ethnic minorities, research examining the effect of postpartum stress on risk of developmental delays in diverse populations is of critical importance. In this study, data from the Community Child Health Network provided the opportunity to test maternal postpartum stress as a predictor of toddler risk of developmental delay in a sample of African American, Latina and non-Hispanic White women and their toddlers (N = 1537) recruited in urban, suburban, and rural communities. Postpartum maternal stress over 1 year was operationalized as perceived stress, life events, and negative impact of life events. Regression results revealed higher risk of developmental delays in toddlers whose mothers experienced more negative life events, greater negative impact of events, and higher perceived stress over the year. Prenatal stress, pregnancy/birth complications, and postpartum depression did not explain these associations. Maternal postpartum stress may contribute to increased risk for developmental delays and is an important target for psychosocial intervention., (© 2019 Wiley Periodicals, Inc.)

Race-specific time trends in Autism Spectrum Disorder prevalence are tracked among 3-5 year-olds and 8 year-olds identified by the U.S. Individuals with Disabilities Education Act (IDEA) and the Autism and Developmental Disabilities Monitoring (ADDM) Network, respectively. White ASD prevalence historically has been higher than other racial groups but plateaued for IDEA birth cohorts from ~ 2004 to 2007 before resuming its increase. Black and Hispanic IDEA prevalence increased continuously and caught up to whites by birth year ~ 2008 and ~ 2013, respectively, with black prevalence subsequently exceeding white prevalence in the majority of states. Plateaus in white prevalence occurred in some ADDM states for birth years 2002-2006, but IDEA trends suggest prevalence will increase across all racial groups in ADDM's birth year 2008 report.

Objectives: Hispanic/Latino (H/L) children have lower prevalence of neurodevelopmental disabilities (NDD) than other groups. The explanations for this are complex, but may be related to nativity, language barriers, and lack of access to and utilization of healthcare. Previous research focused on how these factors affect children with NDD, but little research has jointly examined whether these factors predict NDD. This study examines whether social and environmental factors explain low prevalence of NDD in this population., Methods: This study uses nationally representative Integrated Public Use Microdata Series National Health Interview Survey data (N = 200,622) and multivariate logistic regression analysis to compare NDD prevalence in white and H/L children (average age of 10.2), and examines whether nativity, healthcare access, healthcare utilization, and language barriers explain this disability disparity., Results: Findings reveal that the H/L NDD disparity is not explained by differences in access to or utilization of healthcare, or as a result of language differences that may create barriers to NDD diagnosis. While H/L children whose sampled adult was born in the USA have lower rates of NDD than whites, H/Ls whose sampled adult were not born in the USA have even lower probability of NDD than H/Ls who were born in the USA., Conclusions: These findings may be a result of cultural differences in knowledge or understanding of what constitutes a disability or the result of differential treatment within the healthcare system among H/Ls. The findings underscore the importance of accessible and culturally appropriate health and clinical care interventions among H/L communities.

Objective: The objective of this study is to measure racial and ethnic disparities in autism-related services among U.S. children with parent-reported autism spectrum disorder (ASD)., Methods: Using the 2011 Survey of Pathways to Diagnosis and Services, we analyzed parent-reported data on 1420 children with current ASD in the nationally representative sample. An estimation method consistent with the Institute of Medicine's definition of health care disparities is used to measure racial and ethnic disparities., Results: The findings revealed Latino-white disparities in the percentage of children currently using school-based occupational and physical therapy and Latino-white and "other race"-white disparities in the percentage of children using physical therapy outside of school. There were no statistically significant black-white disparities. Instead, the study found that the percentage of black children with ASD receiving school-based services was 8 points higher than that of white children (p < 0.04). Factors unrelated to the need for autism services were largely unassociated with the receipt of services., Conclusion: The findings provide a partial baseline and identify a need for further examination of the source of existing disparities and the lack of disparities found for specific services and minority groups.

Using vignettes and interviews, this study examined understanding and awareness of autism, and (a)typical development more broadly, among 32 Somali parents living in the United Kingdom. Results demonstrated that parents of both autistic (n = 16) and non-autistic (n = 16) children were just as likely to identify vignettes of typically developing children, yet parents of autistic children appeared more astute to signs of atypical development. Across the whole sample, parents commonly identified and labelled vignettes of autistic children, but experienced more difficulty labelling vignettes that described children with other forms of atypical development, sometimes mislabeling these children as autistic. This suggests that there is a need for greater support in recognising and identifying different types of atypical development in the Somali community (to mitigate the risk that the term 'autism' may take on its own meaning within the Somali community, becoming a euphemism for a range of developmental conditions). Analysis of interview data identified key sociocultural factors that either helped or hindered the inclusion of families with autistic children within the community, including the Somali community's: (1) perceptions of disability, (2) beliefs about the causes of autism in the Western world and (3) strong reliance on religious beliefs in understanding and accepting an autism diagnosis.

Objective: To provide an empirical overview of the parenting landscape in rural China, focusing on 18- to 30-month-old children and their caregivers in rural Shaanxi province., Methods: We collected unique data on 1442 caregiver-toddler dyads in rural areas of Shaanxi province and examined caregiver attitudes toward parenting, sources of information about parenting, and interactive parenting practices, and how each of these differed across generations. We measured how parenting attitudes and sources of information informed parenting practices. Finally, we measured levels of child development in our sample and the association between parenting practices and children's developmental outcomes., Results: Most of the caregivers did not engage with children in a way that encouraged early development. Caregivers rarely told stories, sang, or used toys to play with their children. Grandmothers were more stressed by the children in their care and engaged significantly less than mothers did in the 3 stimulating interactions. Professional sources of information about parenting were underutilized by all caregivers. We found high rates of developmental delay in our sample and showed that these delays were associated with the lack of caregiver engagement., Conclusion: Our findings suggest that the major economic and social shifts occurring in rural China have not led to a widespread prevalence of stimulative parenting practices. Although caregivers report positive attitudes toward child-rearing, reliable sources of scientific information are lacking. Our results show a troubling generational disconnect between the information-seeking behaviors and parenting practices of rural caregivers.

Background: Although children across the world experience Developmental Disabilities, most research on DD has been conducted using Western cultural perspectives and has primarily focused on mothers, leaving significant gaps in the literature. This study intends to fill some of these gaps by exploring and gaining an understanding of the experiences of fathers raising children with DD. Thus, the aim of this study was: to examine whether stigma, somatization, and parental self-efficacy were associated with stress among Bedouin fathers of adolescents with DD. Besides, the relationship between somatization and stress was examined in this study, as it is mediated by the sense of stigma, as well as the intensity of the mediation of the knowledge of shame, between paternal self-efficacy and stress., Methodology: Notably, ninety Bedouin fathers of adolescents with DD completed five questionnaires. These questionnaires included demographic, stigma, parental self-efficacy, and stress and somatization questionnaires., Results: Significantly, the study findings indicate significant negative relationships between general stress and parental self-efficacy, parental and economic stress and parental self-efficacy, and sense of stigma and parental self-efficacy. Also, the findings indicate significant positive relationships between stigma and anxiety, fear and somatization, and stigma and somatization., Conclusions: Arguably, concerning the findings of the study, intervention programs that are culturally tailored and that concern cognitive-behavioral foundations are recommended to help fathers cope with their sense of stigma. Further, the intervention programs help to deal with stress and somatization and to increase their understanding of parental self-efficacy in raising their child. Therefore, these cultural intervention programs should take into account the individual and his extended family, and place of the family in his life, considering the cultural values and the honor of the family. Further, the programs should take into account the centrality of religion and an awareness of the impact of the social hierarchy and the status of the fathers in the community and on the child with disabilities. In essence, these areas are focal points of power that can assist in providing solutions for the intervention program. Also, it is essential to refer to the living and economic conditions of this community., (Copyright © 2019 Elsevier Ltd. All rights reserved.)

Aims: To examine how Latino parent's personal connection to immigrants is linked to their children's risk of being referred/diagnosed with a developmental disorder., Methods: Using the 2015 Latino National Health and Immigration Survey (n = 548), we asked adults about their connections to immigrants. We also asked if their child has been referred/diagnosed with a developmental disorder. We estimated a series of regressions to predict increases in the probability of a child being referred/diagnosed for a developmental disorder., Results: Respondents who know a deportee are 2.4 times more likely (p = 0.009) to report that their child has been referred or diagnosed with a developmental disorder. Additionally, knowing more deportees, and having a closer family tie with deportees, are all statistically associated with developmental problems., Conclusions: This study adds to the emerging research on stress and child health, by examining the intersections of immigration policy, mental health, and child development., (© 2019 Wiley Periodicals, Inc.)

Background: Succinic semialdehyde dehydrogenase (SSADH) deficiency is a rare autosomal recessively-inherited defect of γ-aminobutyric acid (GABA) metabolism. The absence of SSADH, which is encoded by aldehyde dehydrogenase family 5 member A1 (ALDH5A1) gene, leads to the accumulation of GABA and γ-hydroxybutyric acid (GHB). Few cases with SSADH deficiency were reported in China., Case Presentation: In this study, four Chinese patients were diagnosed with SSADH deficiency in Tianjin Children's Hospital. We conducted a multidimensional analysis with magnetic resonance imaging (MRI) of the head, semi quantitative detection of urine organic acid using gas chromatography-mass spectrometry, and analysis of ALDH5A1 gene mutations. Two of the patients were admitted to the hospital due to convulsions, and all patients were associated with developmental delay. Cerebral MRI showed symmetrical hyperintense signal of bilateral globus pallidus and basal ganglia in patient 1; hyperintensity of bilateral frontal-parietal lobe, widened ventricle and sulci in patient 2; and widened ventricle and sulci in patient 4. Electroencephalogram (EEG) revealed the background activity of epilepsy in patient 1 and the disappearance of sleep spindle in patient 2. Urine organic acid analysis revealed elevated GHB in all the patients. Mutational analysis, which was performed by sequencing the 10 exons and flanking the intronic regions of ALDH5A1 gene for all the patients, revealed mutations at five sites. Two cases had homozygous mutations with c.1529C > T and c.800 T > G respectively, whereas the remaining two had different compound heterozygous mutations including c.527G > A/c.691G > A and c.1344-2delA/c.1529C > T. Although these four mutations have been described previously, the homozygous mutation of c.800 T > G in ALDH5A1 gene is a novel discovery., Conclusion: SSADH deficiency is diagnosed based on the elevated GHB and 4, 5DHHA by urinary organic acid analysis. We describe a novel mutation p.V267G (c.800 T > G) located in the NAD binding domain, which is possibly crucial for this disease's severity. Our study expands the mutation spectrum of ALDH5A1 and highlights the importance of molecular genetic evaluation in patients with SSADH deficiency.

Little is known about health limitations and service utilization among the Native Hawaiian and Pacific Islander (NHPI) children with developmental disabilities (DDs) due to limited data. Our study examined the prevalence of DDs, health limitations, services used, and the unmet needs of NHPI children aged 3 to 17 years using cross-sectional data from the 2014 NHPI National Health Interview Survey. Results showed that prevalence of DDs among NHPI children was lower than American children of other races. DDs were negatively associated with health and functioning of NHPI children. There is a need to promote understanding of DDs among NHPI families and to inform public policy makers to identify appropriate intervention services for NHPI children.

Background: Women with intellectual and developmental disabilities (IDD) in the USA are bearing children at increasing rates. However, very little is known whether racial and ethnic disparities in birth outcomes and labour and delivery-related charges exist in this population. This study investigated racial and ethnic disparities in birth outcomes and labour and delivery-related charges among women with IDD., Methods: The study employed secondary analysis of the 2004-2011 Healthcare Cost and Utilization Project National Inpatient Sample, the largest all-payer, publicly available US inpatient healthcare database. Hierarchical mixed-effect logistic and linear regression models were used to compare the study outcomes., Results: We identified 2110 delivery-associated hospitalisations among women with IDD including 1275 among non-Hispanic White women, 527 among non-Hispanic Black women and 308 among Hispanic women. We found significant disparities in stillbirth among non-Hispanic Black and Hispanic women with IDD compared with their non-Hispanic White peers [odds ratio = 2.50, 95% confidence interval (CI): 1.16-5.28, P < 0.01 and odds ratio = 2.53, 95% CI: 1.08-5.92, P < 0.01, respectively]. There were no racial and ethnic disparities in caesarean delivery, preterm birth and small-for-gestational-age neonates among women with IDD. The average labour and delivery-related charges for non-Hispanic Black and Hispanic Women with IDD ($18 889 and $22 481, respectively) exceeded those for non-Hispanic White women with IDD ($14 886) by $4003 and $7595 or by 27% and 51%, respectively. The significant racial and ethnic differences in charges persisted even after controlling for a range of individual-level and institutional-level characteristics and were 6% (ln(β) = 0.06, 95% CI: 0.01-0.11, P < 0.05) and 9% (ln(β) = 0.09, 95% CI: 0.03-0.14, P < 0.01) higher for non-Hispanic Black and Hispanic Women with IDD compared with non-Hispanic White women with IDD., Conclusions: Our findings highlight the need for an integrated approach to the delivery of comprehensive perinatal services for racial and ethnic minority women with IDD to reduce their risk of having a stillbirth. Additionally, further research is needed to examine the causes of racial and ethnic disparities in hospital charges for labour and delivery admission among women with IDD and ascertain whether price discrimination exists based on patients' racial or ethnic identities., (© 2018 MENCAP and International Association of the Scientific Study of Intellectual and Developmental Disabilities and John Wiley & Sons Ltd.)

Background : This paper is a summary of the findings from an ethnographic study on child developmental disabilities conducted partly in Nairobi and Kiambu Counties in Kenya. Methods : Quantitative and qualitative data collection methods were applied for the period between mid August and mid November 2018. The study was conducted through the Kenya Institute of Special Education (KISE) situated in Nairobi County. Results : There are parents who are willing to migrate in search of better education and healthcare options for their children who have developmental disabilities (DDs). However, there are also government reforms taking place in the field of disability that may help to support the caregiving role for children with special needs. The challenges, bargaining position and power play between parents or guardians and other actors implicated in the debates on inclusion and integration of persons with developmental disabilities in Kenya has been brought to the forefront. Conclusions : In Kenya, more needs to be done to change the attitude towards disability from the medical and moral (religious/cultural) models to an approach leaning towards the social model, so that developmental disabilities are not viewed negatively.

Importance: Federal per-child early intervention (EI) appropriations have declined, while accountability for improving children's development and function has increased. It is critical to understand high-value EI services and systems., Objective: To examine EI service timeliness and intensity, and the association between service intensity and outcomes., Design, Setting, and Participants: This secondary data analysis cohort study linked pediatric primary care electronic health records and EI program records from October 1, 2014, to September 30, 2016. Sample children from a large, urban safety-net health system and EI program who were younger than 35 months with a developmental disability or delay were examined. Data analysis was conducted from December 15, 2017, to May 15, 2018., Exposures: The study included measures of condition type and severity, race and ethnicity, family income, insurance type, sex, birth weight, and language., Main Outcomes and Measures: The timeliness of EI (days from referral to EI care plan), service intensity (hours per month) overall and for core EI services (physical, occupational, speech therapy, and developmental intervention), and change in function (measured on a 13-point scale). Adjusted quantile median regression estimated timeliness and intensity. Adjusted linear regression estimated change in function., Results: Of the 722 children who received an EI care plan (median [interquartile range] time to receive EI care plan, 56.0 [1.0-111.0] days) 457 (63.3%) were male, 447 (62.0%) were younger than 12 months, 207 (28.7%) were 12 to 24 months, and 68 (9.3%) were 25 to 35 months. A total of 663 children (91.8%) had a household income of less than $20 000 annually; 305 (43%) of the sample children received an EI care plan within the 45-day deadline. Median (interquartile range) for EI intensity was 2.7 (2.3-3.6) hours per month. Children living above the federal poverty threshold received greater occupational therapy intensity (b, 1.9; 95% CI, 0.9-3.0). Greater clinical severity was associated with more timely receipt of an EI care plan. Compared with infants, 2-year-old children received a care plan almost 2 months sooner (b, -52.0; 95% CI, -79.7 to -24.3). An additional hour per month of EI service was associated with a 3-point functional gain (b, 3.0; 95% CI, 1.5-5.9) among children with complete outcomes information (n = 448)., Conclusions and Relevance: In this study, greater EI service intensity was associated with better functional gains, yet most children in the study received delayed care and/or low service intensity. Clinical and EI record linkages could serve as a framework for improving EI processes.

Placement instability places foster children at an increased risk of negative developmental outcomes. Previous research has yielded inconsistent results on risk factors for placement instability. Therefore, we investigated two research questions: (1) Which child attributes and case histories are associated with placement disruptions (moves indicative of child, agency or caregiver dissatisfaction with the existing placement)?; and (2) How do associations of child attributes and case histories with placement disruptions vary by developmental stage --early childhood (0-5 years), middle childhood (6-12 years), and adolescence (13 years or older)? Using a complete entry cohort of 23,765 foster children in Texas, our results demonstrated that the effects of different risk factors varied by placement end reason and across developmental stages. Of note, kinship placement, compared to non-relative foster care, and placement with all siblings were each associated with an increased risk of substandard care disruptions. Placements with females or Hispanic children were at an increased risk of child-initiated disruption, whereas placements with Black children were more likely to end due to placement mismatch or substandard care reasons. Finally, the adolescence age group was always associated with the greatest increase in risk regardless of disruption reason. These findings provide researchers, caseworkers, and policymakers important information on the risk factors for placement instability among children in foster care., (Copyright © 2018 Elsevier Ltd. All rights reserved.)

Purpose: The present study aimed to investigate chromosomal microarray (CMA) and clinical data in patients with unexplained developmental delay/intellectual disability (DD/ID) accompanying dysmorphism, congenital anomalies, or epilepsy. We also aimed to evaluate phenotypic clues in patients with pathogenic copy number variants (CNVs)., Materials and Methods: We collected clinical and CMA data from patients at Konyang University Hospital between September 2013 and October 2014. We included patients who had taken the CMA test to evaluate the etiology of unexplained DD/ID., Results: All of the 50 patients identified had DD/ID. Thirty-nine patients had dysmorphism, 19 patients suffered from epilepsy, and 12 patients had congenital anomalies. Twenty-nine of the 50 patients (58%) showed abnormal results. Eighteen (36%) were considered to have pathogenic CNVs. Dysmorphism (p=0.028) was significantly higher in patients with pathogenic CNVs than in those with normal CMA. Two or more clinical features were presented by 61.9% (13/21) of the patients with normal CMA and by 83.3% (15/18) of the patients with pathogenic CMA., Conclusion: Dysmorphism can be a phenotypic clue to pathogenic CNVs. Furthermore, pathogenic CNV might be more frequently found if patients have two or more clinical features in addition to DD/ID., Competing Interests: The authors have no financial conflicts of interest., (© Copyright: Yonsei University College of Medicine 2018.)

Immigrants in the U.S. often have comparatively favorable health outcomes despite relative socioeconomic disadvantage- a phenomenon termed the Immigrant Paradox. This study examined the relationship between family immigrant status and developmental problems among children born preterm. The 2011-2012 National Survey of Children's Health data collected through a telephone based survey based on parental report of prematurity and other comorbidities were analyzed using multivariate logistic regression analysis to examine seven developmental outcomes. Preterm 1st/2nd generation children had fewer developmental problems than preterm 3rd generation children. Controlling for socioeconomic status and other covariates, 1st/2nd generation children had significantly lower odds of developmental delay, cerebral palsy, epilepsy, and hearing problems. Consistent with the Immigrant Paradox, prematurely born children of immigrants had comparable or better developmental outcomes than preterm children of US born parents despite socioeconomic disadvantage. Further research to explicate mechanisms responsible for the protective health effects observed is warranted.

Obesity rates have escalated to the point of a global pandemic with varying prevalence across ethnic groups. These differences are partially explained by lifestyle factors in addition to genetic predisposition to obesity. This review provides a comprehensive examination of the ethnic differences in the genetic architecture of obesity. Using examples from evolution, heritability, admixture, monogenic and polygenic studies of obesity, we provide explanations for ethnic differences in the prevalence of obesity. The debate over definitions of race and ethnicity, the advantages and limitations of multi-ethnic studies and future directions of research are also discussed. Multi-ethnic studies have great potential to provide a better understanding of ethnic differences in the prevalence of obesity that may result in more targeted and personalized obesity treatments., (© 2017 World Obesity Federation.)

Background: Preterm birth and developmental vulnerability are more common in Australian Aboriginal compared with non-Aboriginal children. We quantified how gestational age relates to developmental vulnerability in both populations., Methods: Perinatal datasets were linked to the Australian Early Development Census (AEDC), which collects data on five domains, including physical, social, emotional, language/cognitive, and general knowledge/communication development. We quantified the risk of developmental vulnerability on ≥1 domains at age 5, according to gestational age and Aboriginality, for 97 989 children born in New South Wales, Australia, who started school in 2009 or 2012., Results: Seven thousand and seventy-nine children (7%) were Aboriginal. Compared with non-Aboriginal children, Aboriginal children were more likely to be preterm (5% vs. 9%), and developmentally vulnerable on ≥1 domains (20% vs. 36%). Overall, the proportion of developmentally vulnerable children decreased with increasing gestational age, from 44% at ≤27 weeks to 20% at 40 weeks. Aboriginal children had higher risks than non-Aboriginal children across the gestational age range, peaking among early term children (risk difference [RD] 19.0, 95% confidence interval [CI] 16.3, 21.7; relative risk [RR] 1.91, 95% CI 1.77, 2.06). The relation of gestational age to developmental outcomes was the same in Aboriginal and non-Aboriginal children, and adjustment for socio-economic disadvantage attenuated the risk differences and risk ratios across the gestational age range., Conclusions: Although the relation of gestational age to developmental vulnerability was similar in Aboriginal and non-Aboriginal children, Aboriginal children had a higher risk of developmental vulnerability at all gestational ages, which was largely accounted for by socio-economic disadvantage., (© 2017 John Wiley & Sons Ltd.)

Developmental disabilities are a set of heterogeneous disorders characterized by difficulties in one or more domains, including but not limited to, learning, behavior, and self-care. This report provides the latest prevalence estimates for diagnosed autism spectrum disorder, intellectual disability, and other developmental delay among children aged 3–17 years from the 2014–2016 National Health Interview Survey (NHIS). Estimates are also presented for any developmental disability, defined as having had one or more of these three diagnoses. Prevalence estimates are based on parent or guardian report of ever receiving a diagnosis of each developmental disability from a doctor or other health care professional., (All material appearing in this report is in the public domain and may be reproduced or copied without permission; citation as to source, however, is appreciated.)

Objective: To detect potential mutation in a Chinese family affected with succinic semialdehyde dehydrogenase deficiency., Methods: Genomic DNA was extracted from the peripheral blood samples of the proband, her family members and 100 healthy controls. All exons and flanking intronic regions of the ALDH5A1 gene were amplified by PCR and subjected to direct sequencing., Results: The proband was found to have compound heterozygous mutations of the ALDH5A1 gene, namely c.398&#95;399delAA (p.N134X) and c.638G>T (p.R213L), for which her parents were both heterozygous carriers. The same mutations were not found among the 100 healthy controls., Conclusion: The novel mutations of the ALDH5A1 gene probably underlie the pathogenesis of the disease in the infant, which also enriched the mutation spectrum of the ALDH5A1 gene.

Background: Maternal controlling behaviour has been found to influence child development, particularly in behavioural and emotional regulation. Given the higher rates of interfering parent control found in mothers of children with developmental delays (DD) and Latina mothers, their children could be at increased risk for behavioural and emotional dysregulation. While studies generally support this increased risk for children with DD, findings for Latino children are mixed and often attributed to cultural models of child rearing. The present study sought to determine the moderating roles of child DD and mother ethnicity in determining the relationships between two types of parent control (supportive directiveness and interference) and child dysregulation over time., Methods: The present study, involving 178 3-year old children with DD (n = 80) or typical development (n = 98), examined observed parent control (directive versus interfering) of Latina and Anglo mothers as it relates to change in preschool child dysregulation over 2 years., Results: Interfering parent control was greater for children with DD and also for Latino mothers. Supportive directive parenting generally related to relatively greater decline in child behaviour and emotion dysregulation over time, while interfering parenting generally related to less decline in child behaviour dysregulation over time. In Anglo but not Latino families, these relationships tended to vary as a function of child disability., Conclusions: Parent directives that support, rather than deter, ongoing child activity may promote positive regulatory development. These results particularly hold for children with DD and Latino families, and have implications for parenting practices and intervention., (© 2016 MENCAP and International Association of the Scientific Study of Intellectual and Developmental Disabilities and John Wiley & Sons Ltd.)

The incidence of developmental delay and early intervention (EI) service utilization is not well documented among unauthorized Mexican immigrants, a vulnerable population. Individual interviews were conducted in Spanish with Mexican born women receiving maternal health care. Children 12-60 months of age were screened for developmental delay using the Ages and Stages Questionnaire. 12 % (n = 8) of children assessed (n = 65) were at risk for developmental delay. Of those at risk 38 % (n = 3) participated in EI. An additional 26 % of the children (n = 17) qualified for further monitoring, and of those 59 % (n = 10) received EI. Women with low health literacy had more than four times the odds of having a child with risk of developmental delay (aOR 4.4; 95 % CI 1.3-15.4). Developmental delay was associated with low maternal health literacy in unauthorized Mexican immigrants; however, rates of self-reported EI use in this population are higher than those seen nationally.

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.

The Autism Diagnostic Interview-Revised (ADI-R) has been validated as a tool to aid in the diagnosis of Autism; however, given the growing diversity in the United States, the ADI-R must be validated for different languages and cultures. This study evaluates the validity of the ADI-R in a US-based Latino, Spanish-speaking population of 50 children and adolescents with ASD and developmental disability. Sensitivity and specificity of the ADI-R as a diagnostic tool were moderate, but lower than previously reported values. Validity of the social reciprocity and restrictive and repetitive behaviors domains was high, but low in the communication domain. Findings suggest that language discordance between caregiver and child may influence reporting of communication symptoms and contribute to lower sensitivity and specificity.

Cultural beliefs may influence parents' willingness to raise concerns on a developmental screener. Our study evaluated the performance of the Parents' Evaluation of Developmental Status (PEDS) in an urban community health center where 75% of families are Spanish speaking. Our primary outcome was the presence of parent-reported concerns either in the medical record or on the PEDS before the PEDS was introduced compared with after it became routine care (post-PEDS). Covariates included family language and child age, gender, and risk status. The adjusted odds of a concern being identified was 1.5 times greater in the post-PEDS period for Developmental concerns and 2.1 times greater for Behavioral concerns. There was no association with family language indicating that the PEDS performs equally well for English- and Spanish-speaking families. The systematic inclusion of developmental screening as part of culturally competent primary care may aid in reducing current disparities in the identification of developmental concerns., (© The Author(s) 2015.)

Objectives: Families with migrant backgrounds (MB) are exposed to several psychosocial risk factors that increase the likelihood of impaired child development, in particular., Questions: We investigated whether families with MB differ from families without MB regarding their psychosocial stressors in the period of pregnancy and birth., Method: As part of a social early warning system in an obstetrics clinic in Germany n=502 families with MB were compared with n=349 families without MB with respect to the degree of stress and stress factors on the basis of an initial screening of risk factors for child maltreatment by a midwife or physician and a subsequent structured clearing interview by social education workers during the mothers' inpatient hospitalisation., Results: For families without MB, a significantly higher total score was found in the risk screening (M=3,9 points vs. M=2,9 points) in comparison to families with MB. While families with MB compared to families without MB were faced more frequently by social stressors, e. g., financial problems or a difficult housing situation (81 vs. 37%), they were less frequently impacted by mental strain (27 vs. 48%), young fathers (2 vs. 10%) and maternal psychiatric diseases (3 vs. 17%), according to the risk screening. Socio-economic determinants such as social inclusion and living environment were found to be important factors influencing the psychosocial stress level of families., Conclusion: Explanations and implications for research and practice are discussed., (© Georg Thieme Verlag KG Stuttgart · New York.)

Background: Cohen Syndrome (COH1) is a rare autosomal recessive disorder, principally identified by ocular, neural and muscular deficits. We identified three large consanguineous Pakistani families with intellectual disability and in some cases with autistic traits., Methods: Clinical assessments were performed in order to allow comparison of clinical features with other VPS13B mutations. Homozygosity mapping followed by whole exome sequencing and Sanger sequencing strategies were used to identify disease-related mutations., Results: We identified two novel homozygous deletion mutations in VPS13B, firstly a 1 bp deletion, NM&#95;017890.4:c.6879delT; p.Phe2293Leufs*24, and secondly a deletion of exons 37-40, which co-segregate with affected status. In addition to COH1-related traits, autistic features were reported in a number of family members, contrasting with the "friendly" demeanour often associated with COH1. The c.6879delT mutation is present in two families from different regions of the country, but both from the Baloch sub-ethnic group, and with a shared haplotype, indicating a founder effect among the Baloch population., Conclusion: We suspect that the c.6879delT mutation may be a common cause of COH1 and similar phenotypes among the Baloch population. Additionally, most of the individuals with the c.6879delT mutation in these two families also present with autistic like traits, and suggests that this variant may lead to a distinct autistic-like COH1 subgroup.

The aim of this study was to assess the effect of massage therapy on the growth and development of infants of HIV-infected mothers in a low socio-economic community in Cape Town. It was a prospective, randomised, controlled intervention trial that included massage therapy and control groups of HIV-infected mothers and their normal birth weight infants who were enrolled in the prevention of mother-to-child transmission (PMTCT) programme. Participants were recruited at the 6-week clinic visit and followed up every 2 weeks until their infants were 9 months of age. Mother-infant pairs in the massage therapy and control groups included 73 and 88 at 6 weeks and 55 and 58 at 9 months, respectively. Mothers in the intervention group were trained to massage their infants for 15 min daily. The socioeconomic status, immunity, relationship with the partner and mental pain of mothers; the infants' dietary intake, anthropometry and development (Griffiths Mental Development Scales); and haematological and iron status of mothers and infants were assessed at baseline and follow-up. Nine infants (5.3%) were HIV-infected on the HIV DNA PCR test at 6 weeks. Despite significantly higher levels of maternal mental pain, infants in the massage therapy compared to control group scored higher in all five of the Griffiths Scales of Mental Development and significantly higher in the mean quotient (p=0.002) and mean percentile (p=0.004) for the hearing and speech scale at 9 months. Based on the mean difference in scores, the massage therapy group showed greater improvement for all five scales compared to the control group. The mean difference in scores was significantly greater for the hearing and speech quotient (21.9 vs. 11.2) (p<0.03) and the general quotient percentile (19.3 vs. 7.7) (p=0.03) in the massage therapy compared to the control group. These scales remained significant when adjusting for the relationship with the partner and maternal mental pain. Both groups had lower scores in the performance scale at 9 months although this was significantly worse in the control compared to the massage therapy group when adjusting for maternal CD4 count, anaemia, relationship with the partner and mental pain. There were no significant differences in the anthropometric measurements between the two groups. In conclusion, based on the Griffiths Scales, massage therapy improved the overall development and had a significant effect on the hearing and speech and general quotient of HIV-exposed infants in this study., (Copyright © 2015 Elsevier Inc. All rights reserved.)

Background: Killing and abuse of children with disabilities are covert phenomena, occurring in some developing regions, such as in some African countries. Similar to the practice of ritual killing of spirit children in Ghana, the phenomenon of the snake child in Cote d'Ivoire (known as Ivory Coast), is the ritual abandonment or killing of children with intellectual disability (ID)., Method: This study is a qualitative ethnographic investigation into understanding this phenomenon. Three major questions were of interest: (1) Who are the snake children? (2) How are these children viewed and treated? (3) What are ways of changing negative attitudes towards children with developmental disabilities?, Results: The practices of killing, abandonment and abuse of children with disabilities take place in Cote d'Ivoire today, although the extent is not known., Conclusion: Killing and abuse of children with ID are explained within the context of indigenous African religions, animism and folk culture. The concept of disability 'otherness' and inferiority is also explored as a framework for reflection and ethical debate., (© 2014 MENCAP and International Association of the Scientific Study of Intellectual and Developmental Disabilities and John Wiley & Sons Ltd.)

Two disparate statistics often cited for the Western United States raise concern about risks for developmental disabilities in Native American children. First, 13 of the states with the highest percentage of Native American population are located in the Western United States (U.S. Census Bureau, 2012 ). Second, more than 161,000 abandoned hard-rock mines are located in 12 Western states (General Accounting Office, 2014 ). Moreover, numerous studies have linked low-level metals exposure with birth defects and developmental delays. Concern has emerged among tribal populations that metals exposure from abandoned mines might threaten development of future generations.

The purpose of this study was to determine the prevalence of chronic conditions and functional difficulties of American Indian/Alaska Native (AIAN) children with special health care needs (CSHCN). We conducted bivariate and multivariable analysis of cross-sectional data on 40,202 children from the 2009-2010 National Survey of Children with Special Health Care Needs aged birth through 17 years, including 1,051 AIAN CSHCN. The prevalence of AIAN CSHCN was 15.7 %, not significantly different from the prevalence of US white CSHCN (16.3 %). As qualifiers for special needs status among AIAN children the use of or need for prescription medication was the most frequent (70 %), compared to the lower rates of need for elevated service use (44 %) and emotional, mental, or behavioral treatment/counseling (36 %). Asthma (45 %), conduct disorder (18 %), developmental delay (27 %), and migraine headaches (16 %) were significantly more common chronic conditions among AIAN CSHCN compared to white CSHCN, as were functional difficulties with respiration (52 %), communication (42 %), anxiety/depression (57 %), and behavior (54 %). AIAN CSHCN were also more likely to have 3 or more chronic conditions (39 vs. 28 %, respectively) and 3 or more functional difficulties (70 vs. 55 %, respectively) than white CSHCN. Results indicated a greater impact on the daily activities of AIAN CSHCN compared to white CSHCN (74 vs. 63 %). Significantly greater disease burden among AIAN CSHCN suggests that care must be taken to ensure an appropriate level of coordinated care in a medical home to ameliorate the severity and complexity of their conditions.

Background: Immigrant and refugee populations and people with disabilities are known to have inequitable access to a range of health services. Very little study has been undertaken, however, about immigrants who have disabilities and their experience of the American health care system., Research Design: This qualitative study seeks to discover the particular challenges that immigrants with disabilities face when accessing health care, and the facilitating factors that assist them in this process. A complex multicase study design was utilized, and included purposively sampled individuals from 3 different immigrant communities, having an array of developmental disabilities. Interviews and participant observation provided the data that were analyzed in NVivo9 using a conventional content analysis approach., Results: Findings from this study suggest strong resilience among immigrant families with a member with a disability, as they continue to seek help despite experiencing confusion in navigating a complex health care system. Factors challenging access included difficulty finding accurate information on insurance and service providers, troubles with coordinating multiple specialist services, and a lack of cultural competence in all levels of health service provision. Access to health care services was facilitated by linguistically and culturally sensitive practitioners, favorable comparisons to the country or origin, and systems such as schools that helped to coordinate care., Conclusions: Much can be done to integrate and improve health services to immigrants with developmental disabilities. Emerging models such as medical home may assist with coordination, and improvements in communication patterns could help to improve service access and outcomes.

Background: Past research has been dedicated to documenting disparities in use of preventive health care faced by racial and ethnic minorities. In addition, studies have looked at the disparities in use of preventive health care experienced by individuals with intellectual and developmental disabilities (ID/DD). There is little known research that examines disparities in preventive health care use by individuals with ID/DD who identify as African American or Hispanic., Objectives: This study aimed to determine whether National Core Indicators data demonstrate racial and/or ethnic disparities in the use of preventive health care. Further, this study examined whether those racial and/or ethnic disparities in the use of preventive health care persisted when the analysis controlled for other demographic factors., Methods: Data were derived from the 2011 to 2012 administration of the Adult Consumer Survey of the National Core Indicators Project. The association of race/ethnicity and preventive health care was assessed using binary logistic regression models., Results: There seem to be differences in receipt of preventive care by race/ethnicity. However, most of these differences were not significant after other person-level factors were accounted for., Conclusions: Race/ethnicity may be less of a factor in accessing preventive care among adults with ID/DD receiving services than among the general population.

Key Findings: Data from the National Study of Long-Term Care Providers. In 2012, more than one-third of participants in adult day services centers were younger than 65. A higher percentage of participants in nonprofit centers than in for-profit centers were younger than 65. About one-half of participants in adult day services centers were non-Hispanic white persons. A higher percentage of participants in for-profit centers than in nonprofit centers were Hispanic or were non-Hispanic and of a race other than black or white. Almost one-third of adult day services center participants had Alzheimer's disease or other dementias, and about one-quarter had a developmental disability. A lower percentage of participants in for-profit than in nonprofit centers had Alzheimer's disease or other dementias or a developmental disability. The 4,800 adult day services centers nationwide provide a variety of services to their 273,200 participants, the majority of whom are older adults and women (1). The number of for-profit adult day services centers has grown in recent years (2). The 1,900 for-profit centers, representing 40% of centers nationally, served nearly one-half (47%) of center participants in 2012 (3). Using data from the National Study of Long-Term Care Providers, this report presents selected characteristics of adult day services center participants in 2012 and compares the characteristics of participants in for-profit centers with those in nonprofit centers., (All material appearing in this report is in the public domain and may be reproduced or copied without permission; citation as to source, however, is appreciated.)

Every 3 years, the Australian Government conducts a developmental census across the entire population of children in their first year of full-time schooling (median age 5 years). The first developmental census was conducted in 2009, including 261,147 children, and in 2012 data were collected on 289,973 children-representing 97.5% and 96.5% of the estimated eligible population, respectively. The questionnaire is completed by teachers on the basis of at least 1 month's knowledge of the child, including aspects of physical, social, emotional, language and cognitive development, as well as data on special needs. Teachers are also asked to include details of the child's care arrangements and attendance in early education programmes in the years preceding school. Demographic and geographical data are recorded at the individual and area levels., (© The Author 2014; all rights reserved. Published by Oxford University Press on behalf of the International Epidemiological Association.)

To date, most research with families who have a child with developmental disabilities has been undertaken in English speaking countries. Poorer health, allied with increased levels of stress has been commonly reported for mothers but less is known about the impact on fathers and on overall family functioning. This study aimed to document the correlates of these parental impacts with Iranian mothers and fathers who had children with either intellectual disabilities (ID) or with autism spectrum disorders (ASD). In all 121 parents (69 mothers and 52 fathers from 94 families) who had a child with a diagnosis of ADS, along with 115 parents of children with ID (83 mothers and 32 fathers from 101 families) volunteered to take part in the study. Each participant completed through interview standardised rating scales of parenting stress, emotional well-being, family functioning and satisfaction with caring role along with demographic information and details of informal supports. Structural Equation Modeling identified that family functioning was much poorer in families whose child had ASD and both mothers and fathers reported higher levels of stress. Poorer emotional well-being contributed to higher stress and was more frequent among mothers, single parents and those whose children had behaviour problems. Having other dependents living at home and more sources of informal support improved the emotional wellbeing of parents but not their stress or family functioning. Parents who derived greater satisfaction from their caring role tended to have better emotional health and less stress. Although the impact on Iranian parents of having a child with developmental disabilities is broadly similar to those of parents in other cultures, there are indications that children with ASD present distinct challenges to these families. The model derived in this study is a useful guide both for further research as well as family-centred interventions., (Copyright © 2014 Elsevier Ltd. All rights reserved.)

The use of complementary and alternative medicine by children with autism and the association of its use with child comorbid symptoms and parental stress was studied in an ethnically diverse population, in a cross-sectional study with structured interviews. The sample included 50 families of children with autism and 50 families of children with other developmental disabilities, matched by age/gender. Interview included the Complementary and Alternative Medicine Questionnaire, Gastrointestinal Questionnaire, Children's Sleep Habits Questionnaire, Aberrant Behavior Checklist, and Parenting Stress Index. In this ethnically diverse sample, the use of complementary and alternative medicine was significantly higher for the autism group. In the autism group, use was significantly related to child's irritability, hyperactivity, food allergies, and parental stress; in the developmental disabilities group, there was no association with child comorbid symptoms or parental stress. The results contribute information to health care providers about families of children with autism who are more likely to use complementary and alternative medicine.

Objective: Routine, standardized screening for autism spectrum disorder (ASD) has been hypothesized to reduce known racial/ethnic and socioeconomic status (SES) disparities in age of first diagnosis. This study explored demographic differences in toddlers' age and performance on developmental measures at the time of ASD assessment., Method: Toddlers (16-39 months at evaluation) who screened at-risk for developmental delay on the Modified Checklist for Autism in Toddlers (M-CHAT) or M-CHAT-Revised (M-CHAT-R) and follow-up interview participated in a diagnostic assessment. Of these, 44.7% were racial/ethnic minorities and 53.5% were non-minorities. Child race/ethnicity, years of maternal education (MEd), and household yearly income (YI) were parent-reported., Results: Small but significant correlations were observed between MEd or YI and evaluation age and adaptive communication, socialization, and motor scores. Controlling for MEd and YI, minority racial/ethnic group did not predict child's performance on most measures and did not predict likelihood of ASD diagnosis. Differences in age at evaluation and receptive language skills were small effects., Conclusion: Significant but small effects emerged for SES and minority status on toddlers' age at evaluation and parent-reported adaptive skills, but these did not predict ASD diagnosis. The small magnitude of these effects suggests that routine, standardized screening for ASD in toddlers and timely access to diagnostic evaluation can reduce disparities in age at diagnosis and possibly reduce racial/ethnic disparities in access to services for ASD and other developmental delays.

Aim: The aim of this analysis was to study and explore factors associated with the developmental progress in urban Aboriginal children at 3 years., Methods: The Gudaga Study is a longitudinal birth cohort study of urban Aboriginal infants. The children were assessed using the Griffiths Mental Development Scales, Extended Revised (GMDS-ER) and the Peabody Picture Vocabulary Test, Fourth Edition (PPVT-IV). Student's t-tests and multiple linear regression analysis were used to test the association between developmental progress and possible risk factors., Results: Overall, the mean general quotient (GQ) for Gudaga children was significantly lower than the standardised norm (P < 0.001). In the GMDS-ER subscales, the scores were higher than expected in the locomotor (P = 0.002) and personal-social domains (P = 0.002) and lower than expected for language (P < 0.001), eye and hand coordination (P < 0.001), performance (P < 0.001) and practical reasoning (P < 0.001). Multiple regression analysis showed that maternal age (P = 0.02) and single-mother status (P = 0.04) were significantly associated with lower performance on the GMDS-ER. The GQ was inversely proportional to the number of risk factors present (P = 0.001). The mean score of the PPVT-IV was also lower than the PPVT-IV norms (P < 0.001)., Conclusion: At 3 years, urban Aboriginal children show relative strengths in their locomotor and self-care skills and emerging delays in their language, fine motor and performance skills. Slower developmental progress was more likely in the context of young maternal age and single parenthood., (© 2013 The Authors. Journal of Paediatrics and Child Health © 2013 Paediatrics and Child Health Division (Royal Australasian College of Physicians).)

This study aimed to identify strengths and resources associated with the adaptation of families from previously disadvantaged backgrounds in South Africa following the diagnosis of a child with a developmental disability. Data was collected from parents (N = 40), as family representatives, using 7 self-report questionnaires and an open-ended question. The results showed positive correlations between an acceptance of the situation, positive patterns of family communication, commitment to the family unit, a positive attitude toward new experiences and challenges, and family adaptation, whereas incendiary communication and the age of the child were found to be inversely correlated with family adaptation. The quality of family patterns of communication was found to be the most significant predictor of family adaptation. The findings can be used to enrich existing family interventions to promote family resilience and affirm the reparative potential of families.