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At present, there are no brief, freely-available, informant-report measures that evaluate key challenging behaviors relevant to youth with autism spectrum disorder (ASD) or other developmental disabilities (DD). This paper describes the development, refinement, and initial psychometric evaluation of a new 18-item measure, the Open-Source Challenging Behavior Scale (OS-CBS). In a large sample (n = 2004, 169 with ASD, ages 2–17), results of psychometric analyses indicated a clear factor structure (property destruction, aggression, elopement, conduct problems, and self-injury and a general factor with high loadings from all items) based on exploratory structural equation modeling, good scale reliability (α =.66–.83 for subscales, α =.91 total scale), measurement invariance across demographics, and good construct validity. The OS-CBS is a psychometrically-sound instrument for screening and monitoring intervention progress. [ABSTRACT FROM AUTHOR]

Bariatric surgery is an effective treatment for children and adolescents with severe obesity. However, outcomes in youth with cognitive impairments and/or developmental delays are understudied. This paper reviewed the literature on bariatric surgery within this population. Fourteen studies published from 1975 to 2019 were identified. The majority (93%) of studies included patients with genetic disorders. Most studies reported no peri-operative complications (69%) and improved health outcomes (79%), with variable weight-loss results (29.2–86.2% excess weight loss). No significant differences were reported for youth with and without cognitive impairment and/or developmental delay in two studies. Limited available data suggest bariatric surgery may promote weight loss and improve health comorbidities for youth, irrespective of cognitive or developmental functioning. Clinical recommendations for working with patients and families are included. [ABSTRACT FROM AUTHOR]

The current paper describes the prevalence of psychiatric diagnoses in a large sample (n = 150) of adolescents with developmental disabilities who were hospitalized for inpatient psychiatric treatment. Differential diagnoses made during their inpatient stay in a specialty unit for the assessment and treatment of dually diagnosed adolescents are presented and contrasted with longitudinal/historical data on these same patients' diagnoses prior to admission. Results indicate that these individuals received a wide spectrum of diagnoses during their adolescent years. The paper offers indirect support that correctly diagnosing psychiatric conditions is often challenging in adolescents with developmental disabilities. Factors related to diagnostic complexity and misdiagnoses (false positives and false negatives) are discussed. Longitudinal data on psychotropic medication usage for these individuals are also presented. [ABSTRACT FROM AUTHOR]

A better understanding of the endocannabinoid system and a relaxation in regulatory control of cannabis globally has increased interest in the medicinal use of cannabinoid-based products (CBP). We provide a systematic review of the rationale and current clinical trial evidence for CBP in the treatment of neuropsychiatric and neurodevelopmental disorders in children and adolescents. A systematic search of MEDLINE, Embase, PsycINFO, and the Cochrane Central Register of Trials was performed to identify articles published after 1980 about CBP for medical purposes in individuals aged 18 years or younger with selected neuropsychiatric or neurodevelopmental conditions. Risk of bias and quality of evidence was assessed for each article. Of 4466 articles screened, 18 were eligible for inclusion, addressing eight conditions (anxiety disorders (n = 1); autism spectrum disorder (n = 5); foetal alcohol spectrum disorder (n = 1); fragile X syndrome (n = 2); intellectual disability (n = 1); mood disorders (n = 2); post-traumatic stress disorder (n = 3); and Tourette syndrome (n = 3)). Only one randomised controlled trial (RCT) was identified. The remaining seventeen articles included one open-label trial, three uncontrolled before-and-after trials, two case series and 11 case reports, thus the risk of bias was high. Despite growing community and scientific interest, our systematic review identified limited and generally poor-quality evidence for the efficacy of CBP in neuropsychiatric and neurodevelopmental disorders in children and adolescents. Large rigorous RCTs are required to inform clinical care. In the meantime, clinicians must balance patient expectations with the limited evidence available. [ABSTRACT FROM AUTHOR]

Purpose: People with intellectual and developmental disabilities (IDD) experience high rates of depression. Evidence indicates that physical activity, or participation in a sports club, in a supportive social environment has mental and physical health benefits. Adults with IDD, on average, engage in low levels of physical activity. The purpose of this study was to compare the rates of depression among young adult Special Olympics participants with IDD compared to non-participants with IDD. Methods: This was a 20-year retrospective cohort study of young adults (19–29 years) with IDD in the province of Ontario, Canada that compared rates of depression among Special Olympics participants (n = 8710) to non-participants (n = 42,393) using administrative health databases housed at ICES (formerly the Institute for Clinical Evaluative Sciences). Using cox proportional hazard models, the crude hazard ratios were calculated for the association between each independent variable and the dependent variable. Results: After controlling for other variables, the hazard rate for depression among Special Olympics participants compared to the hazard rate for depression among non-participants generated an adjusted hazard ratio of 0.51. Over the 20-year follow-up, the participants were 0.51 times as likely to develop depression as non-participants; this represents a 49% reduction in risk among Special Olympics participants. This result was statistically significant and represents a medium effect size. Conclusion: Future research is needed on how much of this risk reduction is related to a physiological response to physical activity/exercise, and how much is related to the social connectedness of being part of a group participating in Special Olympics. [ABSTRACT FROM AUTHOR]

This article aimed to review outcome measure instruments of self-reported Quality of Life (QOL) in people with Intellectual Disability (ID). Instruments were identified from five electronic databases (CINAHL, Medline, PsychINFO, Cochrane Library, and ERIC) and hand-searching with the following inclusion criteria: (i) the paper was to evaluate the measurement properties of QOL; (ii) the measurement measured dimensions/indicators that align with the QOL construct; (iii) the target participants should include an ID population; (iv) the measurement should include self-reported QOL ratings from the ID population; and (v) the study was published in peer-reviewed English language literature. Nine QOL instruments met the inclusion criteria. The evidence of reliability and validity of the included instruments varied. None of the instruments reported for responsiveness. The Choice Questionnaire had the most evidence supporting its measurement properties while the Maryland Ask Me! Project had the least. Future studies are needed to further refine these instruments. [ABSTRACT FROM AUTHOR]

The purpose of this paper is to examine social systems theory as it relates to the inclusion of disenfranchised populations into the larger social system by enabling these populations to receive education and resources which can allow them to develop skills needed to achieve inclusion. Specifically this study is concerned with using elements of social systems theory to develop a sexual education program for a population identified with an Intellectually/Developmentally Disability (ID/DD). In order to do this, it is necessary to work within the family or caregiver system where these individuals live and function. Caregivers must be helped to recognize the potential for inclusion in this area of life for this population, and educational tools appropriate to the developmental and cognitive levels of the participants must be made available. Acknowledgment of the individual’s role within the system and understanding of the individual’s experience of that systems interaction with the environment and with other systems is primary in developing effective programming which can increase the quality of the participants’ interactions and relationships, making life a more productive and more satisfying experience. [ABSTRACT FROM AUTHOR]

Exploratory factor analysis (EFA) is a widely used but poorly understood statistical procedure. This paper described EFA and its methodological variations. Then, key methodological variations were used to evaluate EFA usage over a 10-year period in five leading developmental disabilities journals. Sixty-six studies were located and evaluated on multiple procedural variations. Only 35% ( n = 23) of studies used EFA; principal components analysis was the model used most often ( n = 40, 61%). Orthogonal rotation was used most often ( n = 39, 59%). A large portion of studies ran analyses with a subject: item ratio larger than 5:1 ( n = 49, 74%). Most researchers employed multiple criteria for retaining factors ( n = 45, 68%). Overall, results indicated that published recommendations and guidelines for the use of EFA are largely ignored. [ABSTRACT FROM AUTHOR]

Group-matching designs are commonly used to identify the diagnosis-specific characteristics of children with developmental disabilities. In this paper, we address three issues central to the use of this design. The first concerns the α level to be used for considering groups to be matched on the control variable(s). The second involves the measurement characteristics of the control and target variables. We discuss the properties of standard scores, raw scores, and age equivalents and argue against the use of age equivalents. In addition, we consider the appropriateness of the commonly made prediction that groups that are matched for a control variable such as language ability or nonverbal reasoning ability but are not matched for chronological age should perform at equivalent levels on the target variable. Finally, we discuss issues related to the interpretation of significant between-group differences on the target variable, assuming groups are well-matched on the control variables, and describe the benefits of a method that focuses on characterizing a disorder on a case-by-case basis and then aggregating the cases, using the measures of sensitivity and specificity from signal detection theory. [ABSTRACT FROM AUTHOR]

The purpose of this study was to describe the profile of individual, relational, and contextual resilience resources reported by youth with FASD and their caregivers and examine how these resources related to early childhood adversity, potential protective factors, and concurrent emotional and behavioral functioning. Nineteen youth with FASD (aged 13 to 23 years) and their caregivers (foster or adoptive parents) completed the Child and Youth Resilience Measure (CYRM-28), the Behavioral Assessment System for Children (BASC-2), and a detailed developmental history questionnaire. Youth with FASD were reported to have comparable relational resilience resources to a typically developing reference group, but lower contextual resources compared to the reference group. Caregivers reported youth to have low individual resilience resources, but youth with FASD reported individual resources commensurate with the normative reference group. Early childhood adversity, age, sex, and IQ were not significantly associated with resilience resources. However, earlier age of stable caregiving placement and earlier age at FASD diagnosis were associated with greater caregiver-reported relational and contextual resilience resources. Finally, higher youth- and caregiver-reported individual resources were associated with less mental health symptomology, and higher youth- and caregiver-reported individual and contextual resources were associated with better adaptive functioning behavior. These findings complement previous research documenting the necessity of ensuring early stable relationships for youth with FASD and permitting timely access to diagnostic services. The results also highlight the need to better understand and strengthen individual and contextual resources. [ABSTRACT FROM AUTHOR]

This study assessed needs and outcomes for people with developmental disability (DD) to understand the socioeconomic status of this group prior to implementation of the Accessible Canada Act in June 2019. The 2017 Canadian Survey on Disability (CSD) was used to analyze data for a sample of individuals with self-reported disability. Data related to employment, education, income, housing, caregivers, and use of government benefits is reported. Compared to the general Canadian public, persons with DD are less likely to: finish high-school or post-secondary education; participate in the labor force or be employed; and earn on average less/year in total income. To align with recent accessibility legislation, significant progress is needed to address disparities for people with DD. [ABSTRACT FROM AUTHOR]

In countries with public health insurance, caregivers may face long wait times to access services for children with intellectual and developmental disability. This limited access may compromise the adaptation of the child and their family, especially when specialized services (e.g., early intensive behavioral interventions) are needed to manage problem behaviors. Further, longer wait times can contribute to parental stress and increase problem behaviors in children. Therefore, the purpose of the current study was to evaluate the effectiveness of an online parent training for managing problem behaviors for families awaiting specialized services. Twenty-nine families of children with intellectual and developmental disability participated in a randomized controlled trial with random assignment to a waitlist control (i.e., sixteen families in the experimental group and thirteen in the waitlist group). Our results demonstrated that the online training led to reductions in the frequency of problem behaviors and parenting stress while improving caregivers' self-efficacy. This study provides preliminary evidence for the utility of an online training to support caregivers of young children with intellectual and developmental disability. Highlights: This online training can support caregivers in managing problem behaviors while awaiting services for their child. The results demonstrated that the training increased caregivers' sense of self-efficacy in managing problem behaviors. A significant decrease in parental stress was observed in caregivers who completed the online training. [ABSTRACT FROM AUTHOR]

Telehealth has been shown to be both acceptable and effective in many areas of healthcare, yet it was not widely adopted prior to the SARS-CoV-2 (COVID-19) pandemic. Additionally, previous evaluations of telehealth for autism spectrum condition (ASC) and intellectual and developmental disability (IDD) populations are limited in both number and scope. Here, we investigated satisfaction amongst Psychology and Psychiatry patient caregivers at Cincinnati Children's Hospital Medical Center (CCHMC) after the onset of the COVID-19 pandemic. Results (640 responses) showed high rates of satisfaction across departments, appointment types, and diagnoses, with 92% indicating overall satisfaction with their appointment. There were, however, notable decreases in satisfaction among Group Therapy respondents, and those whose diagnosis was classified as Other. [ABSTRACT FROM AUTHOR]

Many parents experience grief and loss in response to their child receiving an autism diagnosis in early childhood. However, there is a dearth of research that considers if grief and loss are experienced by parents throughout their child's adolescence and young adulthood. Further, there is a small but growing body of evidence suggesting that parents of autistic children may be living with ambiguous loss in particular, that is, a loss for which there is no closure or resolution. This case study introduces a peer group intervention utilizing an ambiguous loss framework that school social workers and other clinicians can adopt to support mothers of autistic adolescents who are struggling with ambiguous loss. Through the group process, the mothers developed deeper understanding, self-compassion, and effective coping strategies, resulting in a more resilient approach to the transition process and an enhanced capacity to plan for a meaningful adult life with their autistic child. [ABSTRACT FROM AUTHOR]

Over the past 10 years, identification of Autism Spectrum Disorder (ASD) risk has dramatically increased due to the wide-spread implementation of screening programs; yet, there is limited understanding about parent perceptions and experiences during the time period when risk is identified, but prior to receiving a formal diagnosis—a period that can last months to years given the long wait-lists for formal ASD evaluations. The current study aimed to examine parent perceptions of family impact (i.e., the impact their child's behaviors have on the family) between the time of risk-identification and formal diagnosis among 277 children identified as at-risk for ASD through screening positive in primary care. We aimed to compare family impact among those whose child met diagnostic criteria for ASD and those who did not. Parents of children who received a non-ASD diagnosis reported a higher baseline level of family impact (F[1, 274] = 5.82, p =.017); however, perceived difficult child behavior was a stronger predictor of family impact (t[6] = 13.11, p <.001) than later diagnostic group (t[6] = − 2.10, p =.037), and child functioning did not predict family impact (t[6] = -0.31, p =.76). These results suggest that in this population, perceived difficult child behavior is a stronger predictor of family impact than later diagnostic category and should be considered an important factor in family support. [ABSTRACT FROM AUTHOR]

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We evaluated factors affecting psychological ill-effects and resilience of caregivers of children with developmental disabilities during the coronavirus pandemic. Depression, Anxiety, and Stress Scales (DASS-21) and Connor-Davidson Resilience Scale 25-item were administered. Logistic regression was used to identify factors associated with psychological ill-effects and resilience. DASS-21 depression, anxiety and stress scores were high; these were associated with difficulties with infection control measures, autism diagnosis, and need for early intervention services. For caregivers of children with ASD, our DASS-21 scores were significantly higher than non-pandemic scores locally and in other Asian sites. Resilience scores correlated inversely with DASS-21 scores. Targeted support to selected at-risk caregivers and improving resilience can help their coping. [ABSTRACT FROM AUTHOR]

Growing interest in the pathogenesis of autism spectrum disorders (ASDs) and other intellectual and developmental disabilities (IDD) has led to emerging evidence implicating a role for oxidative stress. However, understanding the strength of this association is made challenging by the use of a variety of purported biomarkers of oxidative stress, many of which have either uncertain specificity or flawed methods of analysis. This review aims to address this issue, which is widespread in the ASD and IDD literature, by providing readers with information concerning the strengths and limitations of the choice and analysis of biomarkers of oxidative stress. We highlight that biomarkers and assays should be specific, sensitive, reproducible, precise, robust, and chosen with careful consideration. Future studies should be sufficiently powered and address sample collection, processing, and storage which are, additionally, poorly considered, sources of bad practice, and potential errors. Only with these issues considered, will the data lead to conclusions as to the precise role of oxidative stress in ASDs and IDD. [ABSTRACT FROM AUTHOR]

Transitioning to post-secondary education is often challenging for students with intellectual and developmental disabilities (IDD). To address this, Florida International University, specifically FIU Embrace, piloted the Embrace Mentoring Program (EMP), which provided unique role-specific workshops to both faculty/staff mentors, and student mentees with IDD. A mixed-method design was used to analyze knowledge acquisition and participant perceptions of the workshops. Quantitative findings indicated knowledge improvement in a key area for mentors, while qualitative data demonstrated a positive response to workshop content, and highlighted areas of improvement for future workshops. Ultimately, the results from the pilot EMP demonstrated promise in supporting students with IDD towards academic and career-related goals, by providing mentorship training to both mentors and mentees. [ABSTRACT FROM AUTHOR]

Playgroups are widely used throughout the Australian community yet understanding of their efficacy is hindered by inconsistent playgroup definitions and practice principles. This study aimed to develop, implement and evaluate the feasibility of a manualised therapeutic playgroup for children with developmental delay and their families using a three step process. Step one, manual development, involved triangulating findings from playgroup literature and utilising a working group of professionals (n = 10) and caregivers (n = 2) to identify practice principles and inform the content of a manualised playgroup. Step two, conducted a feasibility study involving parents (n = 9) and children (n = 8); with findings informing step three, manual revisions, in preparation for larger-scale efficacy testing. Step one resulted in the development of an 8-week manualised playgroup for children with developmental delay. In step two, playgroup participants demonstrated improvements in family support and child performance, with playgroup reported as being beneficial by both parents and facilitators. This perceived benefit was attributed to parents' shared experience, access to skilled facilitators, parent learning and child enjoyment. In step three these findings were incorporated, finalising the manual. In a context where playgroup research is limited by model variability and poorly defined practice principles, this is the first study to systematically develop, implement and pilot a manualised therapeutic playgroup intervention for children with developmental delay. It provides an evidence-based definition of playgroup principles, delivers sufficient assurance of playgroup feasibility to warrant a larger definitive trial, and outlines a process for developing and testing the feasibility of a manualised, complex intervention. Highlights: Demonstrates the process of manualising and testing the feasibility of a complex intervention. Therapeutic playgroups warrant larger, more rigourous study through randomised control trials. [ABSTRACT FROM AUTHOR]

Previous research suggests that parents may experience higher levels of depression, stress, and uncertainty around the time when their child receives a diagnosis of a developmental disorder. However, there is mounting evidence that some parents experience positive transformation related to their child's diagnosis. We used an exploratory mixed method design to elicit parents' mental models related to their child's developmental diagnosis. We analyzed parents' responses to six open-ended online survey questions to gain insights about parents' transition with respect to their child's diagnosis. Our findings indicate that some parents' mental models associated with their child's developmental diagnosis change. We found that parents associate awareness of their child's differences with feeling uncertain and wanting to search for information. Parents' descriptions of adapting to a new state was associated with experiencing frustration and confusion with providers and other people outside of their immediate family. Parents' expressed confidence and pride describing their experiences related to accepting their child's diagnosis. Parents' descriptions of acceptance often focused on greater understanding of their needs. Our results suggest that a three-stage model to describe parent transition is appropriate. Additionally, it appears that parent mental models related to their child's developmental diagnosis evolve over time. Future studies should explore the ways in which gaining insight about parent mental models of transition may inform developing education and other supports for families. Highlights: This study used discourse analysis to explore parent mental models of transition. Stage 1 was associated with feeling uncertain and seeking information from experts. Stage 2 was associated with dissatisfaction, confusion and questioning experts. Stage 3 was associated with having strategies in placing and feeling confident. [ABSTRACT FROM AUTHOR]

Telehealth has been utilized to provide behavioral services to families with children with autism spectrum disorder (ASD) and other disabilities. This systematic review provides an update on current research pertaining to the use of telehealth to provide behavior analytic-based services and train caregivers in implementing behavioral procedures. This review also describes information on reported training components and caregivers' procedural fidelity. Empirical studies were collected from five databases. Overall, the studies provide evidence of the utility of telehealth as a service delivery model for providing behavior analytic-based services and for training caregivers to implement behavioral assessments and procedures. The authors discuss potential considerations for developing training packages and training caregivers via telehealth. Future research should use experimental methods to determine effective components for training individuals via telehealth to use behavioral procedures with good fidelity as well as to detect other factors that may influence procedural fidelity. [ABSTRACT FROM AUTHOR]

Purpose This systematic review analyzed the effectiveness of rehabilitation interventions on the employment and functioning of people with intellectual disabilities (ID), as well as barriers and facilitators of employment. Methods This was a systematic review of quantitative, qualitative, and mixed methods studies. The outcomes were employment, transition to the open labor market and functioning. The review included qualitative studies of employment barriers and facilitators. The population comprised people with ID aged 16–68 years. Peer-reviewed articles published in English between January 1990 and February 2019 were obtained from the databases Cinahl, the Cochrane Library, Embase, Eric, Medic, Medline, OTseeker, Pedro, PsycInfo, PubMed, Socindex, and the Web of Science. We also searched Google Scholar and Base. The modified selection instrument (PIOS: participants, intervention, outcome, and study design) used in the selection of the articles depended on the selection criteria. Results Ten quantitative (one randomized controlled, one concurrently controlled, and eight cohort studies), six qualitative studies, one multimethod study, and 21 case studies met the inclusion criteria. The quantitative studies showed that secondary education increases employment among people with ID when it includes work experience and personal support services. Supported employment also increased employment in the open labor market, which sheltered work did not. The barriers to employment were the use of sheltered work, discrimination in vocational experience, the use of class teaching, and deficient work experience while still at school. The facilitators of employment were one's own activity, the support of one's family, job coaching, a well-designed work environment, appreciation of one's work, support form one's employer and work organization, knowledge and experience of employment during secondary education, and for entrepreneurs, the use of a support person. Conclusions The employment of people with ID can be improved through secondary education including proper teaching methods and personal support services, the use of supported work, workplace accommodations and support from one's family and employer. These results can be utilized in the development of rehabilitation, education, and the employment of people with ID, to allow them the opportunity to work in the open labor market and participate in society. [ABSTRACT FROM AUTHOR]

The effects of place on human health and development have been extensively studied in recent years in the adult and adolescent populations, but minimal research has addressed neighborhood effects in early childhood. This analysis of the National Survey of Children's Health 2011/2012 cross-sectional survey examined relationships between risk for developmental disability in early childhood and neighborhood characteristics in a nationally-representative sample of children ages 0–5 years. Parents reported on their child's development using a well-validated parent report screening tool for developmental problems (the Parent's Evaluation of Developmental Status tool), and neighborhood and family characteristics. Multinomial logistic regression analyses were conducted for each of three neighborhood variables: physical disorder, safety, and isolation. After controlling for parental and child characteristics, the three neighborhood variables were each significantly associated with moderate (but not severe) risk versus low to no risk for developmental disabilities. When all neighborhood characteristics were included simultaneously in the same model, only physical disorder remained statistically significant [OR 1.44 (95% CI 1.09–1.91)], though modestly attenuated. These results suggest that neighborhoods may have effects on early childhood development, after controlling for individual child, parental, and family characteristics. [ABSTRACT FROM AUTHOR]

Parents of children with developmental delays (DD) report elevated mental health difficulties compared to parents of children with typical development, which appear largely associated with child behavior problems. Latino parents of children with DD may experience heightened risk for poor mental health outcomes due additional stressors associated with minority status. Mindfulness-Based Stress Reduction (MBSR) appears to be efficacious for reducing parenting stress and improving well-being in families of children with DD; however, studies have rarely focused on families from racial and ethnic minority backgrounds. The current study employed a mixed-method, waitlist-control design to examine the efficacy of MBSR for improving parent and child outcomes in Latino and non-Latino families. Results indicate that MBSR is similarly efficacious for Latino and non-Latino families in improving parent mental health (parenting stress, depressive symptomatology, and life satisfaction) and reducing parent-reported child behavior problems. Qualitative analyses further highlight avenues for improving the efficacy of MBSR for Latino families by providing intervention directly in Spanish, rather than using translation services, for Spanish-speaking families. Findings reveal the efficacy of standard MSBR for Latino parents of children with DD and underscore the potential benefits of disseminating this practice to traditionally underrepresented families. [ABSTRACT FROM AUTHOR]

Objectives: Many parents of children with developmental disabilities, including autism spectrum disorders and attention deficit disorders, experience poor well-being and increased anxiety and depression. Very few interventions directly target parents' needs. The peer-delivered HOPE Programme was designed to address this with six weekly group sessions focusing on self-management skills, including goal setting and expressing gratitude.Methods: This pre-post study aimed to examine changes in anxiety, depression, well-being, hope and gratitude, and to explore associations between changes in anxiety and depression and changes in gratitude and hope. Validated measures of depression, anxiety, positive well-being, gratitude and hope were used. Parents of children with a range of developmental disabilities, most commonly autism spectrum disorders, were recruited.Results: Of 137 (86.9% female) recruited, 108 parents completed the course and post-course data. Parents' depression, anxiety, well-being, gratitude and hope all significantly improved between baseline and post-course. Hope and gratitude correlated significantly with depression, anxiety and well-being. Baseline depression, baseline gratitude, post-course hope and gratitude explained 50% of the variance in post-course depression. Reduced work hours, and baseline and post-course hope and gratitude explained 40% of the variance in post-course well-being. Anxiety was not associated to hope nor gratitude at either time point.Conclusions: This study provides initial support for feasibility and potential effect of the peer delivered self-management intervention on parental anxiety and depression. Changes in gratitude and hope account for some change in depression, but not anxiety. A randomised controlled trial is needed to establish efficacy and explore mechanisms of change in-depth. [ABSTRACT FROM AUTHOR]

Whether to initiate or to withhold Renal Replacement Therapy (RRT) in children with severe developmental disability (DD) remains a topic of intense debate. The present study investigated the opinion of professionals on this difficult issue and proposed a checklist with guiding questions for decision-making. Clinicians affiliated to different organizations involved in pediatric nephrology worldwide were invited to respond to a web-based survey. This survey focused on the collection of demographic data of the respondents together with their opinion concerning the decision-making regarding RRT in a particular case and for children with severe DD in general. A total of 286 professionals responded to the survey. Sixty-six percent supported initiating RRT in the child of the case report, with pre-emptive transplantation being the preferred modality. Important arguments pro RRT initiation in children with severe DD in general were parental preference, decrease of suffering, and improvement of survival and quality of life. Important contraindications included low IQ, severe comorbidities, and inability of the patient to take medication or for the family to provide sufficient care.Conclusion: The present study presents an inventory on the opinions of health care professionals involved in RRT in children regarding the treatment of children with DD and assists in the decision-making process by identifying important medical and psychosocial arguments for initiating or withholding RRT in severe DD patients. What is Known: •Renal Replacement Therapy (RRT) in children with severe developmental disability (DD) is a topic of intense debate. •Previous studies on the opinion of professionals mainly focused on the use of IQ as an argument in the decision-making whether or not starting RRT. What is New: •The present study investigated the opinion of professionals with regard to considering initiation or withholding RRT in children with severe DD and identified medical and psychosocial arguments playing a role in the decision-making process. •Based on these arguments, a checklist with guiding questions for decision-making is proposed. [ABSTRACT FROM AUTHOR]

Individuals with intellectual and developmental disabilities (IDD) experience much higher rates of forced sexual interactions than non-disabled individuals, with incidence ranges from 44% in children (Ballan in J Autism Dev Disord 42:676-684, 2012; Kvam in Child Abuse Negl 24:1073-1084, 2000; van der Put et al. in J Intellect Disabil Res 58:979-991, 2014) to 83% in adults (Johnson and Sigler in J Fam Violence 15:95-108, 2000). These incidents may be perpetrated by others with disabilities (van der Put et al. in J Intellect Disabil Res 58:979-991, 2014) or, more frequently, by caregivers or others known to the individual. This may be the case because individuals with intellectual and developmental disabilities (IDD)—especially those with very low IQs—tend to receive little by way of sex education. This study assessed parental beliefs of sexuality education needs of children with and without disabilities through an online survey comprised of questions about the parents, their child, and their attitudes about their child’s sexuality. Results showed that parents of children with IDD are less likely to believe their children will have consensual or non-consensual sex before age 18 than parents of children without IDD, but favor sexuality education for their children, with parents preferring to provide it themselves, with the assistance of or through preparation by workshop with a professional. These finding are discussed in the context of implications for intervention and increasing options for sexuality education for learners with IDD. [ABSTRACT FROM AUTHOR]

Evidence-based psychosocial family interventions enhancing empathy and empowerment are particularly beneficial to families of children who have developmental disabilities. This study assessed the effectiveness of an intervention called the Nurturing Program for Parents and Their Children with Special Needs and Health Challenges (SNHC). Eighty-seven families were enrolled and randomly assigned to a control or treatment group. Forty-six families in the control group received individualized case management (CM) services and forty-one families in the treatment group were assigned to 12 sessions of the SNHC curriculum along with case management services. Before and after the intervention, participants in both conditions completed the Adult and Adolescent Parenting Index-2 assessing parents’ attitudes toward child rearing and the Family Empowerment Scale (FES) measuring family empowerment. Caregivers in the intervention condition improved in empathy towards children’s needs, F(1, 54) = 4.52, p = .04; and all families, both control group and treatment group, improved their attitudes towards the use of corporal punishment by posttest, F(1, 54) = 6.56, p = .013. Also, all caregivers increased in their empowerment over the course of the intervention, F(1, 50) = 13.28, p = .001. Attrition, 22-26% among CM and 51-56% among SNHC+CM, limited generalizability as did participants not completing all SNHC sessions. Despite these limitations, findings suggest that early interventions catering to families of children with developmental disabilities have a positive impact on parenting. To varying degrees, both conditions provided caregivers with tools that positively affected the quality of the parent-child relationships and promoted empowerment. [ABSTRACT FROM AUTHOR]

There is variability in the extent to which mothers are affected by the behavior problems of their children with developmental disabilities (DD). We explore whether maternal resilience functions as a protective or compensatory factor. In Studies 1 and 2, using moderated multiple regression models, we found evidence that maternal resilience functioned as a compensatory factor—having a significant independent main effect relationship with well-being outcomes in mothers of children with DD and autism spectrum disorder. However, there was no longitudinal association between resilience and maternal well-being outcomes. There was little evidence of the role of resilience as a protective factor between child behavior problems and maternal well-being in both studies. [ABSTRACT FROM AUTHOR]

Conversational virtual human (VH) agents are increasingly used to support role-play experiential learning. This project examined whether a Virtual Interactive Training Agent (ViTA) system would improve job interviewing skills in individuals with autism and developmental disabilities (N = 32). A linear mixed model was employed to evaluate adjusted least square mean differences of means scores on the Marino Interview Assessment Scale (MIAS) across different time points. The mean score of MIAS over all questions increased between the first ViTA session and the final face-to-face interview. Participants developed the ability to identify strengths, self-promote, self-advocate, answer situational questions, and respond to behavioral/ social questions as measured by multiple evaluations using the MIAS. [ABSTRACT FROM AUTHOR]

The current review summarized 54 peer-reviewed articles concerning the assessment treatment of self-injurious behavior (SIB) in adults with intellectual and developmental disabilities. Results indicated that functional analysis was most commonly used to identify the operant function of SIB. Noncontingent reinforcement, differential reinforcement, functional communication training and response blocking were found to be the most frequently implemented interventions across studies. The methodological quality of each study was evaluated using the Council for Exceptional Children quality indicator standards. None of the included studies met all indicators to be considered methodologically sound. Directions for future research and implications for practice are discussed. [ABSTRACT FROM AUTHOR]

The cross-sectional study compared the clinical and need profiles for clients with and without intellectual and developmental disabilities (IDD) in seven mental health case management programs in Toronto, Canada on March 31, 2013. Unmet needs in domains within four broad clusters were measured by staff using an internationally utilized tool, the Camberwell Assessment of Need. Among the 2560 clients, 8.3 % had a co-occurring IDD. For most assessed domains rates of unmet need were not different for persons with and without IDD. However, the IDD group had greater unmet needs for adaptive functioning/skills and cognitive needs [self-care ( p = 0.023), education ( p < 0.001), transportation ( p < 0.001), and information on condition ( p = 0.038)]. While clients with IDD and psychiatric diagnoses often receive poor quality care, in the case management programs examined their rates of unmet need were similar to individuals without IDD across most assessed domains, including in the areas of addictions and physical health care. [ABSTRACT FROM AUTHOR]

The article discusses a study on the importance of sex education training for support workers who assist adults with developmental disabilities (DDs). Topics include the study involving participants from two psychology departments at a university in Canada, the attitude of support workers towards dealing with sexuality-related issues facing adults with (DDs) such as romantic relationships, dating and marriage, and the need for sex education classes to cover sexual abuse and sexual rights.

Objective: To document the effectiveness of low intensity, clinic based intervention models for Autism Spectrum Disorders (ASD) in countries with low disability resources. Methods: Thirty-nine participants with a mean (SD) of 36.03(11.15) mo were assessed before and after intervention with Childhood Autism rating scale (CARS), and at baseline with the Denver Developmental Screening Test for quantifying the effectiveness of the clinic-based intervention in ameliorating autism symptoms and studying the effect of developmental disability respectively. Developmental therapists in the clinic gave low-intensity group intervention for 45-60 min to the child through mother and encouraged to continue the training, for 3-4 h, at home to address the specific goals in the three ASD symptom clusters. Most of the children were also placed in play-schools. Follow-up support was given either on a weekly, fortnightly or monthly basis. Data was analyzed using appropriate bivariate and multivariate techniques. Results: There was amelioration in the severity of autism after intervention, which was statistically and clinically significant. Intervention was useful to help children with mild to severe autism. Conclusions: Low-intensity, clinic-based intervention can be effectively used in situation where there is paucity of disability resources. [ABSTRACT FROM AUTHOR]

We estimated the prevalence of obesity, overweight, and underweight among US adolescents with and without autism and other learning and behavioral developmental disabilities (DDs) and assessed the health consequences of obesity among adolescents with DDs. From the 2008 to 2010 National Health Interview Survey, we selected 9,619 adolescents ages 12-17 years. Parent respondents reported weight, height, presence of DDs and health conditions. We calculated body mass index (BMI) and defined obesity, overweight, and underweight as ≥95th, ≥85th to <95th, and <5th percentiles, respectively, using established criteria. We created mutually-exclusive DD subgroups using the following order of precedence: autism; intellectual disability; attention-deficit-hyperactivity-disorder; learning disorder/other developmental delay. We compared BMI outcomes among adolescents in each DD group versus adolescents without DDs using multivariable logistic regression. Socio-demographic factors and birthweight were included as confounders. Estimates were weighted to reflect the US population. Both obesity and underweight prevalences were higher among adolescents with than without DDs [adjusted prevalence ratios (aPR) 1.5 (1.25-1.75) and 1.5 (1.01-2.20), respectively]. Obesity was elevated among adolescents with all DD types, and was highest among the autism subgroup [aPR 2.1 (1.44-3.16)]. Adolescents with either a DD or obesity had higher prevalences of common respiratory, gastrointestinal, dermatological and neurological conditions/symptoms than nonobese adolescents without DDs. Adolescents with both DDs and obesity had the highest estimates for most conditions. Obesity is high among adolescents with autism and other DDs and poses added chronic health risks. Obesity prevention and management approaches for this vulnerable population subgroup need further consideration. [ABSTRACT FROM AUTHOR]

We compared how quickly two boys with developmental disabilities learned to use tangible symbols, picture exchange, and a direct selection response to access cartoon videos. Intervention, aimed at teaching the boys to use each option, was evaluated in a multiple-baseline across participants and alternating treatments design. Following intervention, the boys were allowed to choose among the three options. Both participants learned to access six cartoon videos using the three options at comparable rates. Following acquisition, both boys most often chose to use tangible symbols. These findings are consistent with previous studies reporting comparable acquisition rates and a preference among communication options. The present study extends the literature by including a comparison of tangible symbols and a direct selection response. Our results provide additional support for the use of tangible symbols as a communication option for children with developmental disabilities. [ABSTRACT FROM AUTHOR]

Adults with developmental disabilities (DDs) are often discouraged from expressing their sexuality and from learning about their sexual rights. As a consequence, they experience high rates of sexually transmitted diseases and sexual abuse, as well as negative attitudes toward their own sexuality. Support workers' attitudes towards such issues are critical since individuals with DDs rely on support workers for information about sex. The following study involved the distribution of a self-administered sexuality questionnaire to university students with support worker experience. The results from the study indicate that support workers with no religious affiliation and those who are more advanced in their educational careers are more likely to have liberal attitudes towards the sexuality of adults with DDs. Analyses also indicated that while support workers were not biased against homosexuality among individuals with DDs, they considered anal sex to be the least acceptable form of sexual expression for this population. Implications of these findings are explored in terms of support worker training and education. [ABSTRACT FROM AUTHOR]

We designed and implemented an edutainment platform, Dreamware. It effectively helps education, sensibility treatment and intelligence training for children with developmental disability. We developed special toy-like hardware and software tools: a content authoring tool that makes a variety of multimedia content operating on the hardware, a management tool that provides training results to instructors, and a real-time monitoring tool to observe the current state of learning. The hardware is designed to consider the characteristics of children with developmental disability. It can provide sensibility training, such as visual, auditory, and tactile senses to them. The easy-to-use authoring tool enables teachers and non-specialists to make educational content conveniently. In addition, the real-time monitoring tool helps observe the user's status, even outside the classroom. The management tool stores training results and provides the result for further steps. Efficient repetitive training is possible without restriction of time and location using this platform. We can recognize that our system is effective in improving their concentration and learning. [ABSTRACT FROM AUTHOR]

Holistic processing of upright, but not inverted, faces is a marker of perceptual expertise for faces. This pattern is shown by typically developing individuals beginning at age 7 months. Williams syndrome (WS) is a rare neurogenetic developmental disorder characterized by extreme interest in faces from a very young age. Research on the effects of inversion on holistic processing of faces by older children and adults with WS has produced mixed results. Younger children with WS were not included in these previous studies. Using the habituation switch paradigm, we demonstrated that 15-35-month-olds with WS process upright, but not inverted, faces holistically. This study provides evidence of perceptual expertise for faces in individuals with WS early in life. [ABSTRACT FROM AUTHOR]

Purpose: To characterize the rate of comorbid psychiatric conditions (CPC) among children with autism spectrum disorders (ASD), to examine their treatment utilization, and to investigate treatment delay or non-delivery. Methods: Lifetime ASD and CPC in children, aged 2-17, were investigated using data from the 2007-2008 National Survey of Children's Health (NSCH). The NSCH surveyed parents and guardians regarding the health and well being, including treatment, of their child(ren) under age 18 ( n = 91,642). Children with health conditions were defined by parent report that a doctor or other health professional had ever said their child had that condition. Factors related to overall health, treatment utilization, and barriers to access variables were investigated among this group. Results: Children with ASD/CPC had poorer overall health outcomes than children with ASD alone. They more often were dissatisfied with their between-provider communication and less often had insurance cover needed services. Nonetheless, they did tend to use care coordination and mental health services to a greater degree. Families were more likely to report the delay or non-receipt of needed services when they perceived a lack of communication and partnership with providers, when they lacked insurance coverage, and when they felt that health care costs were unreasonable. Conclusions: The presence of a CPC seems to shape the treatment utilization and health outcomes of children with ASD. Because of this, health professionals working with children with autism should give special attention to treatment of those with comorbid diagnoses. [ABSTRACT FROM AUTHOR]

The purpose of this descriptive study was to survey and compare. A sample of 32 people who have a developmental disability were asked to complete five questionnaires (i.e., demographics, sexual orientation, sexual history, recalled childhood gender identity and adult gender identity). Comparisons were made regarding their sexual orientation and gender identity, as well as differences based on their diagnosis that may not have been related to their developmental disability. One case study was presented to aid in better understanding of a transgendered individual. Research results showed that most subjects perceived themselves as heterosexual (87%), followed by those that saw themselves as bisexual or questioning (9.7%) and lastly those that reported that they were interested in same sex partners (3.2%). No differences were found for diagnostic category. Four subjects scored within the range to indicate that they had gender identity dysphoria (GID). Again, no differences were found for diagnostic category. Interesting findings resulted when comparisons were made to other measures and to other studies. It is proposed that it is good practice for professionals to rule out the possibility of ambivalence about gender and sexual issues caused by social and life experiences, especially regarding abuse and the lack of information/education. However, their identities, gender identity and/or sexual identity, must be honored as we do with the general population. [ABSTRACT FROM AUTHOR]

Individuals with developmental disabilities/cognitive disabilities (DD/CD) may lack experience and skills necessary to build relationships and define their sexuality boundaries. This lack of experience makes them particularly vulnerable to sexual abuse and exploitation. The short-term goal of this study was to discover the expectations for a sex education program as described by individuals with DD/CD, parents of individuals with DD/CD, professionals who work with individuals with DD/CD, and health care professionals who come into contact with these individuals. The long term goal is to gain information that will be helpful in the development of an appropriate sex education program for individuals with DD/CD. [ABSTRACT FROM AUTHOR]

A robust literature addresses life expectancy (LE) for children with cerebral palsy (CP) and developmental disability (DD). A Medline data search was completed using the terms CP, DD, LE, survival, as well as other pertinent terms. Further articles were gleaned from bibliographies of pertinent literature. Key disabilities accurately predict LE in children with CP and DD: (1) presence and severity of developmental disability, (2) inability to speak intelligible words, (3) inability to recognize voices, (4) inability to interact with peers, (4) severity of physical disability, (5) use of tube feeding, (6) incontinence, (7) cortical blindness, and (8) presence and severity of seizures. Children with CP and DD have a diminished LE, which can be accurately assessed based on simple clinical examination findings. Over the last 50 years there has been improvement in life expectancy based on comparison of newer and older studies. However in approximately the last 20 years, there has been only slight improvement in LE, and this has been found only in the most profoundly impaired children with CP and DD. [ABSTRACT FROM AUTHOR]

Smith-Lemli-Opitz syndrome (SLOS) is a genetic syndrome associated with multiple congenital malformations, mental retardation, and autism spectrum behaviors. This clinical protocol was part of a larger study investigating the effects of a cholesterol-lowering medication for SLOS patients. Behavioral therapists were consulted to facilitate participants’ cooperation with an overnight electroencephalogram (EEG). Seventeen children participated in one 1-hour training session of a mock EEG. Behavioral methods included task analysis , differential reinforcement, and escape extinction. Descriptive data reveal low cognitive and adaptive functioning. Fifty three percent of children tolerated all steps of the training procedure and 88% of participants tolerated all of the actual EEG procedure. Behavioral methods of training children may be an effective preparation for EEG procedures for children with SLOS. This study indicates that sedation, anesthesia, or restraints are not necessary to accomplish EEG testing of children with SLOS. Results may generalize to children with a range of disabilities. [ABSTRACT FROM AUTHOR]

We investigated prior fractures, osteoporosis risk factors, and bone mineral density (BMD) in 107 institutionalized adults with developmental disabilities. We found a very high prevalence of BMD in the osteoporotic range and a significant correlation between lower BMD and prior fragility fractures. The purpose of this study was to investigate factors contributing to osteoporosis and fragility fractures among developmentally disabled adults. Adults from a residential center participated in a prospective study in which bone mineral density (BMD) at the forearm and heel were measured with a portable X-ray densitometer. Prior fragility fractures were identified from chart review. Among 107 participants, 84 (78.5%) had a measurement within the osteoporotic range. The heel was more severely abnormal (mean T-score −3.1 ± 1.5) than the forearm (−1.6 ± 1.3, p < .0.0001). Radiographically confirmed prior fragility fractures (17 [16.3%]) were associated with lower heel ( p = 0.0155) and forearm ( p = 0.0172) T-scores. In multiple regression analysis, there were independent associations between forearm BMD and prior fragility fractures ( p = 0.0126) and between heel BMD and prior fragility fractures ( p = 0.0291). The odds ratio for prior fracture increased by 2.02 (95% CI 1.12–3.64) for each standard deviation (SD) decrease in heel T-score and by 2.39 (95% CI 1.08–5.32) for each SD decrease in forearm T-score. We found a very high prevalence of osteoporotic BMD measurements in institutionalized adults with developmental disabilities. Lower heel and forearm BMD measurements were significantly and independently associated with prior fragility fractures in this population. [ABSTRACT FROM AUTHOR]

Aggressive behavior is a common referral problem for individuals with developmental disabilities (DD), placing them at risk for institutionalization, social isolation, physical restraint, over-use of medication to treat behavior problems, exclusion from services, and becoming a victim of abuse. Aggression strains relationships between individuals being supported and their caregivers, whether professionals or family members. The treatment of aggression is persons with DD, with or without comorbid mental illness, remains a controversial area and changes in practice have been slow to come. The evidence related to pharmacotherapy and psychological treatment is, in general, either lacking or poor. This does not suggest that these treatments are necessarily ineffective but that there is not enough good quality evidence to support their usefulness. This review considers the prevalence and correlates of aggression, as well as possible causative factors. The relationship between mental illness, intellectual disability and aggression is explored. The psychopharmacological and psychological treatment literature is reviewed with implications for clinical care and future research. [ABSTRACT FROM AUTHOR]

While the idea that individuals with developmental disabilities (DD) can suffer from mental illness has been largely accepted since the late 1980’s, this is still an underserved and poorly studied population. In particular, mood disorders have traditionally been misdiagnosed, under-recognized and poorly treated. Through the years, reported rates of mood disorders in adults with DD have varied widely. Recent epidemiological studies have focused on community samples and find rates of mood disorders from 3 to 8.1%. Mood disorders are found to be more prevalent than psychotic disorders or anxiety disorders. The empirical literature on assessment of mood symptoms in adults with DD is limited, particularly in individuals with severe and profound DD. Several tools have been developed to assist in identification and diagnosis. However, the work on their psychometric properties and validity studies is still quite limited. The treatment literature is sparse and focused primarily on pharmacotherapy. This review considers the epidemiology and diagnosis of mood disorders in individuals with DD. Recent developments in assessment are reviewed. The literature regarding pharmacological treatment with antidepressants, mood stabilizers, electroconvulsive therapy and antipsychotics is summarized and the current state of psychological treatments for mood disorders in persons with DD is presented. Implications for clinical care and future research are considered. [ABSTRACT FROM AUTHOR]

This study longitudinally examined the impact of respite care services on child abuse potential and family relations in a sample of parents (N = 14) whose children were admitted for respite care to a center for developmental disability. A sample of parents (N = 18) whose children were admitted for short-term hospitalization (STH) was used as a contrast group. In addition, we examined the interrelationships between child abuse potential, family relations, and parenting stress at 3 time points. Parents completed measures of child abuse potential, family relations, and parenting stress at time of admission, discharge, and at a 2-month follow-up. Results indicated that neither respite care nor STH resulted in significant effects on child abuse potential or family relations although trends were found in the expected direction. Strong interrelationships were found between child abuse potential, family relations, and parenting stress at each of the 3 time points. These preliminary results suggest that respite care may be insufficient to directly impact child abuse potential; however, interventions that target variables related to abuse (e.g., quality of family relations, parenting stress) might be beneficial. [ABSTRACT FROM AUTHOR]