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Recreation and sports participation can produce social health benefits for college students with intellectual and/or developmental disabilities (IDD). Despite growing numbers of college students with IDD on college campuses, literature exploring inclusion within campus recreation is limited. To understand the inclusion, or lack thereof, of college students with IDD in campus recreation, experiences and attitudes of campus recreation staff (N = 24) were examined. A mixed methods study design, including web-based surveys and semi-structured interviews was used to collect data from participants at three North American universities. Results of Multivariate Analysis of Variance and thematic analysis revealed successes, challenges, and barriers among campus recreation staff for implementing inclusion. A significant difference in perception of campus as being more inclusive between the university with Unified Sports affiliated with Special Olympics club and the university with Unified Sports affiliated with the university was also identified. Lastly, resources and strategies for inclusion were revealed as a need. [ABSTRACT FROM AUTHOR]

This article discusses the risks associated with mercury exposure, particularly focusing on at-risk populations in Canada, such as those living in remote areas, individuals living near toxic spills, and those who rely on fish consumption year-round. It underlines the detrimental health effects of mercury exposure, including liver and kidney damage, neurological changes, and developmental issues. The lack of awareness and screening for elevated mercury levels is identified as a significant issue along with the need for greater education regarding possible exposures to mercury. A screening pathway is proposed to aid primary care providers in identifying individuals at risk of elevated mercury levels, with the aim of preventing long-term health complications. Overall, the paper highlights the importance of proactive measures to mitigate mercury exposure and safeguard public health. [ABSTRACT FROM AUTHOR]

Those with intellectual and developmental disabilities (I/DD), especially autism, represent an often misunderstood and underserved population. In order to address health disparities faced by those with I/DD in Washington state, the Extension for Community Healthcare Outcomes (Project ECHO) model was implemented to build capacity to serve these individuals and their families in their home communities. Through this year-long telementorship and learning community, expert teams lead clinics based on interdisciplinary case-based discussion and knowledge sharing with medical, behavioral, and mental healthcare providers. A cornerstone of these expert teams are autistic self-advocates, who provide insight into lived experience. In this paper, we will discuss how the inclusion of six autistic self-advocates across four different ECHO programs has allowed ECHO participants to broaden their horizons and gain new insight into supports for their I/DD clients across multiple aspects of care. In addition to the unique knowledge provided by self-advocates, their participation illustrates the potential for all people with I/DD to live rich and fulfilling lives. The initial implementation and on-going success of including lived experience within the ECHO model can be used as an example of how to create partnerships that meaningfully inform decisions and improve equitable outcomes in service provision. [ABSTRACT FROM AUTHOR]

This paper considers the ways that publicly funded developmental services for adults with developmental disabilities in southern Ontario are limited in how they support clients. This paper is informed by field research conducted in the summer of 2019, which was composed of semi-structured interviews, focus groups, and a policy review. Informed by parent advocates who are the main caregivers of their adult children labelled with intellectual and developmental disabilities, this paper claims that the administrative processes of the Ontario ministry that manages and funds adult disability services relate to broader exclusionary patterns among adults with developmental disabilities. I explore this claim by reviewing how common ableist assumptions of people with developmental disabilities are ingrained in the policies and administrative processes of these services. I contribute to ongoing discussions among Critical Disability Scholars of the ways that disability as a social category can be articulated outside of ableist assumptions. Informed by parent caregiver perspectives, this article outlines how the limitations of provincially funded disability services in Ontario, Canada cause significant challenge in the lives of those labelled with intellectual and developmental disabilities. One possible explanation for these limitations is that there is a disconnect between how the provincial government classifies who should receive immediate services and how many services, versus the actual need of those labelled with intellectual and developmental disabilities. The criteria for high supports, such as monthly funding, placement into a living facility, and the provincial assessment for determining a person's 'adaptive functioning' are rooted in problematic assumptions made of people labelled with intellectual and developmental disabilities. [ABSTRACT FROM AUTHOR]

Although there has been notable progress in educational inclusion for students with intellectual and developmental disabilities (I/DD), they generally receive inadequate sexual health education. This paper outlines the historical factors for this gap, current practices in sexual health education, and related outcomes for this group of students. [ABSTRACT FROM AUTHOR]

Background: The organization of healthcare for people with intellectual and developmental disabilities (IDD) varies across countries. Each country has developed unique practices embedded in their historical and organizational context. Understanding and sharing these practices across borders facilitates mutual understanding about healthcare needs of people with IDD and facilitates the adoption of effective strategies in other countries. Aim: To provide a synthesis across the country‐specific papers in the JPPID special edition and thereby identify underlying trends, challenges, and best practices in healthcare for people with IDD. Methods: The papers in this special edition, which describe the organization of healthcare for people with IDD in 13 countries, were qualitatively analyzed using thematic content analysis, focusing on general characteristics, history, and context, organization of healthcare for people with IDD, challenges, and best practices. Results: Each paper described a specific national history of evolution of healthcare for people with IDD, but our analysis showed that countries face similar challenges in healthcare for people with IDD. These challenges cover (1) access to healthcare, (2) quality of healthcare, (3) implementation, and (4) visibility of people with IDD. Consequently, people with IDD continue to face significant health disparities. Several best practices have been developed, ranging from making mainstream healthcare more accessible and suitable to providing specialized services, and advocating and raising awareness. Conclusions: This synthesis is the first paper to include perspectives on healthcare for people with IDD across 13 countries. We identified that, despite differences in context, countries face similar challenges in improving healthcare for people with IDD. International collaboration and networking can provide essential tools in reducing health disparities that people with IDD face, starting with the challenges identified in this synthesis. This will require effort to especially include low‐ and middle‐income countries. [ABSTRACT FROM AUTHOR]

This article comprehensively reviews motor impairments in children with autism spectrum disorder (ASD) to: (1) determine the prevalence of motor problems in children with ASD; (2) understand the nature of motor difficulties in ASD and whether they are consistent with developmental coordination disorder (DCD); and (3) determine if the term DCD was used as a co-occurring diagnosis in children with ASD after publication of the DSM-5 in 2013. The following databases were systematically searched: MEDLINE, EMBASE, CINAHL, and PsycINFO from 2010 to December 2021. Articles were included if they: (1) were peer-reviewed and published in a scientific journal; (2) included children with ASD who were between 5 and 12 years; (3) used motor or function measures to assess motor abilities in children with ASD. Studies that included children with intellectual disabilities were excluded. Two independent reviewers reviewed titles, abstracts, and full-text articles for inclusion. Twenty-seven studies met the inclusion criteria and were assessed for quality by two independent reviewers using the Appraisal tool for Cross-Sectional Studies. The majority of articles (92.5%) indicated that 50–88% of children with ASD had significant motor impairments on standardized motor assessments and/or functional questionnaires. The nature of motor and function problems in ASD were consistent with DCD; however, only three out of 20 papers (15%) that were published from 2014 described the motor problems as DCD. One study reported that 15.1% of children with ASD with motor impairments had a co-occurring diagnosis of DCD, suggesting that DCD is under-recognized in this clinical population. [ABSTRACT FROM AUTHOR]

Karen Sames was born and raised in Milwaukee, WI. From an early age, she was surrounded by art. An experience with occupational therapy during the third grade jumpstarted her journey connecting art to occupation. Karen believes that art is a necessary part of life and credits much of her own personal success with art to her friends and family for their inspiration and to the instructors at the Eagan Art House in Minnesota. Her piece "Cherry Blossoms," a pastel on paper, is based on a photograph taken by her son, who is currently living in Japan, and graces the cover of the Spring 2024 edition of The Open Journal of Occupational Therapy (OJOT). [ABSTRACT FROM AUTHOR]

Provision of services for autism spectrum disorder (ASD) and developmental disabilities (DD) in Nigeria has been influenced by US and international research and awareness efforts. Forces that impact progress include Nigerian cultural beliefs and family involvement, societal attitudes, inadequate infrastructure and resources, and inconsistent policy and enforcement of disability laws. These forces can impact families both positively and negatively. A lack of standardised teacher training and accreditation programs limit access for students with disabilities to individualised education programs (IEPs) and classroom inclusion. Effective treatments for those with ASD/DD are well-documented, however these effective interventions often do not reach more rural, low-income, or less developed nations or rural, low socioeconomic US schools. The focus of this paper is to thoroughly analyse the evolution of special education and inclusion in Nigeria and the United States and to highlight how US progression influenced Nigeria and the importance of advocating for culturally relevant, low-cost, research-based interventions and outreach African nations such as Nigeria. [ABSTRACT FROM AUTHOR]

Background: The COVID‐19 pandemic has brought about disruptions in healthcare for adults with intellectual and developmental disabilities. There is a need to explore ways to promote proactive healthcare and better prepare individuals for healthcare encounters. Methods: A co‐designed tool, the COVID Check‐in Tool, was introduced as part of a virtual health education programme to encourage proactive healthcare. Implementation of this Health Check‐in was evaluated with 36 adults with intellectual and developmental disabilities and 96 family caregivers who completed the programme using surveys, structured interviews and focus groups. Findings: Forty‐four percent of participants engaged in the Health Check‐in process, resulting in many reported benefits for those who participated. However, there were also barriers to initiating the Check‐in, along with challenges using the COVID Check‐in Tool, according to both the adults with disabilities who were interviewed and the family caregivers. Conclusions: The study underscores the importance of considering ways to integrate tools into routine healthcare practices, to facilitate improved healthcare delivery for people with intellectual and developmental disabilities during pandemic recovery efforts. As well, involving people with lived experience in the development and implementation of healthcare resources is critical. Accessible Summary: Our team worked together to make a tool that would help people with intellectual and developmental disabilities talk to their doctor about health problems after not seeing them a lot because of the pandemic. We called this tool the 'COVID Check‐in'.Then people from our team taught online health courses about how to use the COVID Check‐in Tool and other health topics.After the courses were over, we asked 36 adults with intellectual and developmental disabilities and 96 family caregivers if they had a Health Check‐in with their doctor and how it went, or what problems they had with it.Almost half of the people who took the courses had a Health Check‐in and most of the people thought it was helpful. Some people did not do it or did it but had problems with it.We end the paper with some ideas of how to make it easier to check in with the doctor and why it is important to include people with disabilities and family caregivers when making healthcare tools. [ABSTRACT FROM AUTHOR]

Background: Tailored sexuality education for adolescents with intellectual and developmental disabilities is a crucial, yet unmet, need as this population is particularly at risk for sexual abuse and victimisation. However, there are no evidence‐based interventions to specifically address this need. This paper presents the development of an intervention framework to address equity in sexuality education and support adolescents with intellectual and developmental disabilities to understand and provide sexual consent, a foundational aspect of sexuality education and sexual health. Methods: The Sexual Health Equity Project team used a Community‐Based Participatory Research approach to develop a four‐module sexual consent intervention for adolescents with intellectual and developmental disabilities. We leveraged a diverse, interdisciplinary team in a suburban Midwestern school district, and used Backward Design to create objectives and assessments which were rooted in findings from qualitative data by special education teachers. Results: The resulting sexual consent intervention, Ask Me First—Choices, is comprised of four modules covering topics including definition of sexual consent; decision‐making strategies and practice; communicating consent and refusal, identifying situations of consent and non‐consent; and legal issues surrounding consent. Each module is divided into five components for content delivery: (1) introduction, (2) lecture, (3) supplemental activity, (4) assessment, and (5) conclusion. We detail the intervention's unique aspects, emphasising areas where we used Universal Design for Learning principles to support teachers' instruction and students' learning. Conclusion: Our efforts to create a sexual consent intervention directly address sexuality education equity issues. We offer commentary on our design process and decisions, as well as recommendations for future groups who want to develop sexual health interventions in similar contexts for students with intellectual and developmental disabilities. Next steps include further testing and validation of the sexual consent intervention to build the evidence‐base of sexuality education for adolescents with intellectual and developmental disabilities. [ABSTRACT FROM AUTHOR]

The difficulties faced by youth with intellectual and developmental disabilities (IDDs) and their families as they move into adulthood are widely documented. The aim of the paper is to explore the current situation in terms of transition processes and outcomes in four countries (the US, UK, Australia and Czech Republic) and identify commonalities and differences that help elucidate what might determine different outcomes. Two research methods—expert knowledge and rapid literature review—were combined to identify sources from which information on transition policy, processes, support practices and outcomes was extracted and synthesised. This review identified gaps in the research evidence including inadequate collection and use of data to drive policy and determine effectiveness, limited evidence‐based models or frameworks for successful transition. There was little transition research that included the voices of young people with IDD. More research is necessary to study the practices of highly successful programmes, and to explore the impact of transition programmes and disability support services on a broader range of outcomes, capturing the experiences of young people themselves and identifying factors that determine successful outcomes. [ABSTRACT FROM AUTHOR]

Autism is a neurobiological disorder characterized by difficulties in communication, social interaction and repetitive behaviors and a limited range of interests. In this paper we will try to present the possible methods and techniques of communication with children with developmental disabilities, especially focusing on children with autism and on augmentative and alternative communication in relation to children with autism. The general purpose of the paper is the analysis and description of the positive and negative sides of communication and the representation of adequate methods of communication with autistic children. In this study, two samples from the "Alja" Kindergarten in Tetovo, which we have mentioned here as Sample x and Sample y, have been selected, and augmentative and alternative communication has been applied to them, following the changes and the success of the techniques. Methods such as observation, communication and document analysis were used in data collection. In the case of our study, the use of these techniques has been shown to be successful and we can conclude that they are useful for individuals with communication limitations and that their use should be increased. In our work with samples of children based on AAC techniques, they have shown that they are adequate and practical and can be applied in all environments, therefore we think that experts in the field of special education and communication technologies should work in cooperation to expand the use of assistive technologies in the education of children with limited communication. [ABSTRACT FROM AUTHOR]

Purpose: This paper aims to endorse and elaborate on the recommendations put forward by the Sharland Foundation Developmental Disabilities Applied Behavioural Research and Impact Network (SF-DDARIN), emphasising their significance in the field of developmental disabilities. Design/methodology/approach: This paper outlines a specific point of view. The first section focuses on integrating developmental theory and advanced technology in interventions for developmental disabilities. Subsequently, the commentary explores virtual reality (VR) and generative artificial intelligence (AI) for enhancing social skills and personalising support. Finally, the piece highlights innovations like SocialWise VR and Custom Generative Pre-Trained Transformers in aligning interventions with developmental stages. Findings: Technologies like VR and generative AI hold vast potential to revolutionise how clinicians provide timely and relevant knowledge to individuals with developmental disabilities. Research limitations/implications: This is strictly a commentary. Practical implications: Availability of technology. Social implications: Both VR and generative AI will impact service delivery in a meaningful way. Originality/value: The paper advocates for incorporating these technologies into SF-DDARIN's approach, emphasising their potential to revolutionise evidence-based interventions in developmental disabilities. [ABSTRACT FROM AUTHOR]

The article offers information about the significance of physical aggression in autistic youths and the concerns surrounding their quality of life. It emphasizes the importance of conducting a comprehensive behavioral assessment to understand the individual's life context, health, antecedent conditions, and functions of challenging behavior.

The lives of caregivers can be deeply impacted by having a child with a developmental disability (DD). To offset those impacts, caregivers may engage in accommodations, or strategies to bolster everyday functioning. The nature and extent of these accommodations can provide insight into how the family is doing and what supports are needed from a family-centered perspective. This paper presents the development and preliminary validation of the Accommodations & Impact Scale for Developmental Disabilities (AISDD). The AISDD is a rating scale that measures day-to-day accommodations and impacts of raising a child with a DD. A sample of 407 caregivers of youth with DDs (Mage = 11.7 years; 63% males) completed the AISDD, along with measures of caregiver strain, daily challenges, child adaptive behavior, and behavior and emotional regulation. The AISDD is a unidimensional, 19-item scale with excellent internal consistency (ordinal alpha =.93) and test–retest (ICC =.95) reliability. Scores were normally distributed and sensitive to age (r = −.19), diagnosis (ASD + ID > ASD > ID), adaptive functioning (r = −.35), and challenging behaviors (r =.57). Finally, the AISDD showed excellent convergent validity with similar measures of accommodations and impacts. These findings support the use of the AISDD as a valid and reliable tool for measuring accommodations among caregivers of individuals with DDs. This measure shows promise in its ability to identify which families may need additional support for their children. [ABSTRACT FROM AUTHOR]

The number of students with disabilities enrolled in Japanese institutions of higher education has been on the rise in recent years, and the percentage of those with developmental disabilities is increasing. However, due to differences in the understanding of a given disability on the part of those providing the considerations, differences in the way records are tracked, the fact that a variety of conditions may be indicated by the same diagnosis, and the relationship between the specific functional impairment caused by a given disability, this matter has not been sufficiently investigated. In light of this, the University of Tsukuba, with the assistance of the Ministry of Education, Culture, Sports, Science and Technology (MEXT), has created a new professional position of "assessor," with reference to the initiatives of universities and other organizations in Japan and abroad. In this paper, we will describe these initiatives and provide an overview of the position and the requisite skills. [ABSTRACT FROM AUTHOR]

Reducing restrictive practices toward individuals with intellectual and developmental disabilities is a globally recognized imperative and human rights priority. This paper presents a novel tool called LibRe for assessing and reducing restrictive practices. This tool involved an instrumental multistage design and collaboration between professionals, individuals with disabilities, family members, and experts from different fields. It addresses diverse restrictive practices in five key domains: physical or mechanical, chemical or pharmacological, structural, relational, and practices related to contexts and supports. It addresses practices that are pertinent to the Spanish context and that existing tools have not covered. Embedded as a step within an organizational approach, LibRe fosters organizational transformation and provides resources to achieve outcomes within reduction plans for restrictive practices. In total, 156 teams comprising 585 professionals, 64 people with disabilities, and 44 family members responded to the tool. In terms of evidence for internal structure validity, the oblique five-factor model exhibited an adequate fit through confirmatory factor analysis, along with satisfactory reliability indices, according to ordinal alpha and omega. Users positively appraised the tool's usefulness and identified its strengths and challenges. Although further research is needed, preliminary evidence frames LibRe as a useful resource for practice and research. [ABSTRACT FROM AUTHOR]

This paper discusses three cultural narratives that threaten the health of people with intellectual/developmental disabilities (IDD) and which have become more evident during the COVID-19 pandemic. These meta-narratives are the medical model of health/disability; the population health approach to health inequalities; and policies premised on the assumption of the importance of national economic growth as an incentive for reducing health inequalities. Evidence exists that health research is more likely to become policy if it fits within a medical model and addresses national economic growth. These two criteria are particularly problematic for people who have IDD. The paper also proposes a research model to facilitate the inclusion of IDD related issues in future policy regarding health inequalities. [ABSTRACT FROM AUTHOR]

Purpose: The study aims to qualitatively analyze how faculty can mobilize the intellectual capital of higher education institutions (HEIs), comprising human, structural and relational capital to enable the education and learning of individuals with intellectual and developmental disabilities. Design/methodology/approach: Drawing upon the extant literature, the researcher conducted a qualitative study through written, in-depth interviews with a sample of 40 academic staff/faculty members having prior experience in teaching individuals with intellectual and developmental disabilities. The data was collected through a set of questions formulated as key questions, to be asked to all participants for their responses. Findings: Results of the analysis demonstrated that intellectual capital's contribution to higher education of individuals with intellectual and developmental disabilities can be best understood in terms of its three components/dimensions. Accordingly, three main themes, with each comprising two sub-themes were uncovered. The first theme, leveraging human capital comprised: faculty acumen and faculty training as sub-themes; the second theme, resourcing structural capital comprised: tangible and intangible structural capital as sub-themes; and the third theme, nurturing relational capital comprised: in-class engagement and the second is ex-class connection as sub-themes. Originality/value: The paper collects data from 40 faculty having prior experience in teaching individuals with intellectual and developmental disabilities to explore and reveal a completely new perspective of looking at intellectual capital as a means of providing accessible and inclusive higher education to differently-abled students, making them a part of the mainstream. [ABSTRACT FROM AUTHOR]

Neurogenetic conditions (NGC; e.g., fragile X, Angelman, Prader-Willi syndromes) represent the cause for intellectual or developmental disabilities in up to 60% of cases. With expanded diagnostic options and an increasing focus on the development of gene therapies comes the potential of improved quality of life for individuals with NGCs and their families. However, these emerging initiatives also bring new challenges and considerations for NGC researchers and clinicians, including considerations for supporting caregivers and assuring outcome measures for clinical trials adequately reflect the lived experiences of people with NGCs. This paper summarizes the advances and current and future challenges of research and clinical service provision for people with NGCs and their caregivers. [ABSTRACT FROM AUTHOR]

Purpose: This paper aims to serve as a commentary on the paper titled "Implementation of an Adapted Handwriting Without Tears® Programme for Children with Developmental Disabilities in a Special Education Setting." Design/methodology/approach: It provides an overview of educational strategies that can be used in school settings to support professionals in acquiring skills relevant to their practice and promoting the acquisition of new abilities for their students. Findings: It explores three critical aspects of education: measuring academic progress, using evidence-based methods and enhancing educator training. Originality/value: This work represents the personal perspective of a professional working in the service delivery field for children with developmental disabilities in schools and rehabilitative centres. [ABSTRACT FROM AUTHOR]

Purpose: With a historic lack of attention to synthesis methods such as systematic review and meta-analysis and a lack of randomised controlled trials, the evidence base for behavioural interventions for children and adults who are autistic or are diagnosed with developmental disabilities is patchy. The Sharland Foundation Developmental Disabilities Applied Behavioural Research and Impact Network (SF-DDARIN), a network of like-minded researchers and practitioners across the UK, aims to address this. The purpose of this paper is to describe the network's work and provide the context for the remaining articles in the special issue that exemplify network projects. Design/methodology/approach: In this case study paper, the authors describe how the SF-DDARIN works and is resourced, detailing the process used to maximise research opportunities by facilitating network members working together. The authors outline the progressive research steps that the SF-DDARIN has identified are needed to develop and improve the evidence base for behavioural interventions systematically and, with examples, describe how the network delivers these steps. Findings: Since its establishment in 2016, the SF-DDARIN network members have collectively worked on more than 53 projects involving over 50 researchers, had over 120 special schools contribute to projects and have recruited over 500 participants. This has been achieved through funding from the Sharland Foundation, primarily to cover the staffing costs of a small support team and internship partnerships with external organisations. Some projects have attracted external funding. Originality/value: SF-DDARIN may provide an innovative, effective and resource-efficient model for other groups seeking to develop and extend their evidence base in developmental disability research. [ABSTRACT FROM AUTHOR]

Early childhood education (ECE) spaces within settler-colonial societies operate as sites of violence and oppression whereby non-conformity to white, rational, ableist, cisgender norms is weaponised as developmental deficits. In this paper, we refer to the refusals of non-dominant ways of knowing as forms of epistemic injustice (Fricker 2007). We describe the foundational underpinnings of ECE throughout the twentieth century in Ontario, Canada and trace how normative ideas of children, educators, education, and childhood developed through a largely positivist, developmental orientation. Ultimately, we call for epistemic justice (Fricker 2007) as an emancipatory way forward in post-secondary ECE programmes. [ABSTRACT FROM AUTHOR]

Individuals with intellectual and developmental disabilities (IDD) have unique and complex health care needs that require health care access. Barriers, such as decreased health literacy and a lack of experienced physicians working with this population, make access to inclusive health care increasingly difficult. Therefore, it is important for occupational therapists to intentionally create opportunities to improve healthcare access and utilization for this population. This paper describes the collaborative health narrative development process as well as the inclusion of three examples created by co-authors with intellectual or developmental disability. [ABSTRACT FROM AUTHOR]

This conceptual review paper takes an interdisciplinary approach to the study of self‐injury in families. The overall goal is to begin integrating siloed bodies of knowledge from empirical work based on findings from individuals with and without intellectual and developmental disabilities and self‐injury. The research literature on self‐injury and family‐level variables is reviewed, including dyadic and individual‐level variables with potential bidirectional impact on the family. Then, opportunities for knowledge translation are explored with respect to the pragmatic goal of developing family‐level interventions for self‐injurious behavior in individuals with intellectual and developmental disabilities. Four opportunities for knowledge translation are highlighted: family patterns, parenting behavior, attachment relationships, and emotional experience. [ABSTRACT FROM AUTHOR]

Objective: This study aimed to examine the long-term influence of having a child at risk of different developmental delays (communication, mobility, self-care, relating, learning, coping, or behaving) on parental labor force participation as the child grows. Method: A retrospective cohort was conducted using data from the Longitudinal Study of Australian Children survey, Waves 1–8 covering birth to 15 years of age of children. Multivariable logistic regressions were used to explore the odds ratio of mothers being out of the labor force at different children's ages. Cox proportional hazards models were utilized to identify the 'risk' of mothers returning to the workforce after leaving. All models were adjusted for the mother's age, education attainment, and employment status at time of birth, as well as marital status at the current wave. Results: There were 5,107 records of children, and 266 of them were at risk of any developmental delays at age 4–5 years. This sample represents 243, 026 children born in Australia in 2003/04. After adjusting for potential confounders, mothers of children at risk of each type of developmental delay (except mobility and self-care) had greater odds of being out of, and not returning to the labor force from children aged 2–3 to 14–15 years, when compared to mothers of children who are not at risk of developmental delays. Similar differences were found for fathers but were distinctly small and with narrower fluctuations, compared to mothers. Conclusion: Policies and programs funded by the government are greatly needed to support the mothers of children at risk of developmental delays. Significance: What is already known: Maternal labour force participation has been negatively affected by having a child with chronic health conditions, whereas paternal labour force participation is not significantly influenced. What this paper adds: Having a child at risk of developmental delays negatively influenced maternal and paternal labour force participation, where the influence on fathers was distinctly small and with narrower fluctuations during the 14 to 15 years of follow-up. [ABSTRACT FROM AUTHOR]

The vast majority of individuals with Rett syndrome do not utilize natural speech and therefore require alternative and augmentative communication (AAC). The purpose of the current study was to investigate the use of high- and low-tech AAC modalities by three individuals with Rett syndrome given similar instruction for using both modalities. For all participants, the number of sessions to criterion and cumulative number of trials with independent requests during simultaneous or alternating instruction in the use of a high- and low-tech AAC modality were investigated. Parents conducted all sessions with remote coaching from a research assistant via telecommunication. Each participant exhibited idiosyncratic response patterns in terms of use of their high- and low-tech AAC modalities during instruction but ultimately demonstrated the ability to use both modalities to make requests. Implications for future research and practice pertaining to AAC of individuals with complex communication needs are discussed. This paper is a companion to Girtler et al. (2023). [ABSTRACT FROM AUTHOR]

Background: Individuals with developmental disabilities (DD) experience increased rates of emotional and behavioral crises that necessitate assessment and intervention. Psychiatric disorders can contribute to crises; however, screening measures developed for the general population are inadequate for those with DD. Medical conditions can exacerbate crises and merit evaluation. Screening tools using checklist formats, even when designed for DD, are too limited in depth and scope for crisis assessments. The Sources of Distress survey implements a web-based branching logic format to screen for common psychiatric and medical conditions experienced by individuals with DD by querying caregiver knowledge and observations. Objective: This paper aims to (1) describe the initial survey development, (2) report on focus group and expert review processes and findings, and (3) present results from the survey's clinical implementation and evaluation of validity. Methods: Sources of Distress was reviewed by focus groups and clinical experts; this feedback informed survey revisions. The survey was subsequently implemented in clinical settings to augment providers' psychiatric and medical history taking. Informal and formal consults followed the completion of Sources of Distress for a subset of individuals. A records review was performed to identify working diagnoses established during these consults. Results: Focus group members (n=17) expressed positive feedback overall about the survey's content and provided specific recommendations to add categories and items. The survey was completed for 231 individuals with DD in the clinical setting (n=161, 69.7% men and boys; mean age 17.7, SD 10.3; range 2-65 years). Consults were performed for 149 individuals (n=102, 68.5% men and boys; mean age 18.9, SD 10.9 years), generating working diagnoses to compare survey screening results. Sources of Distress accuracy rates were 91% (95% CI 85%-95%) for posttraumatic stress disorder, 87% (95% CI 81%-92%) for anxiety, 87% (95% CI 81%-92%) for episodic expansive mood and bipolar disorder, 82% (95% CI 75%-87%) for psychotic disorder, 79% (95% CI 71%-85%) for unipolar depression, and 76% (95% CI 69%-82%) for attention-deficit/hyperactivity disorder. While no specific survey items or screening algorithm existed for unspecified mood disorder and disruptive mood dysregulation disorder, these conditions were caregiver-reported and working diagnoses for 11.7% (27/231) and 16.8% (25/149) of individuals, respectively. Conclusions: Caregivers described Sources of Distress as an acceptable tool for sharing their knowledge and insights about individuals with DD who present in crisis. As a screening tool, this survey demonstrates good accuracy. However, better differentiation among mood disorders is needed, including the addition of items and screening algorithm for unspecified mood disorder and disruptive mood dysregulation disorder. Additional validation efforts are necessary to include a more geographically diverse population and reevaluate mood disorder differentiation. Future study is merited to investigate the survey's impact on the psychiatric and medical management of distress in individuals with DD. [ABSTRACT FROM AUTHOR]

The purpose of this paper was to illustrate how to promote physical activity among children and adolescents with disabilities using an exergame under the self-determination theory framework. A variety of features of exergames, including immersive environments, optimal challenges, and social interaction, may make physical activity more enjoyable and engaging for children and adolescents with disabilities. This article will briefly introduce different types of exergames, including virtual reality and augmented reality. Then, elaborate on how to promote physical activity in children and adolescents with developmental disabilities using the self-determination theory framework by providing choice-making, maximizing children and adolescents' strength, and creating opportunities for interaction with peers. [ABSTRACT FROM AUTHOR]

Background: Collaboration between therapists and parents of children with developmental disabilities is a key element of family‐centred care. In practice, collaboration appears to be challenging for both parents and therapists. This systematic review aims to make explicit how therapists can optimise their collaboration with parents of young children with developmental disabilities, according to the perspectives of parents and therapists. Methods: A systematic review was conducted using the following databases: Medline (PubMed), CINAHL (OVID) and PsychINFO (OVID). Those papers were selected, which focused on collaboration using a two‐way interaction between therapists and parents, exploring the perspectives of therapists and/or parents of children between 2 and 6 years. Papers needed to be published in English or Dutch between 1998 and July 2021. Included papers were synthesised using a qualitative analysis approach by two researchers independently. Results sections were analysed line‐by‐line, and codes were formulated and discussed by all authors. Codes were aggregated, resulting in a synthesis of specific collaboration strategies in combined strategy clusters. Results: The search generated 3439 records. In total, 24 papers were selected. Data synthesis resulted in an overview of specific strategies organised into five clusters: (1) continuously invest time in your collaboration with parents, (2) be aware of your important role in the collaboration with parents, (3) tailor your approach, (4) get to know the family and (5) empower parents to become a collaborative partner. Conclusions: This systematic review resulted in an overview of concrete strategies for therapists to use in their collaboration with parents of children with developmental disabilities. The strategies formulated enable therapists to consciously decide how to optimise their collaboration with each individual parent. Making these strategies explicit facilitates change of practice from therapist‐led and child‐centred towards family‐centred care. [ABSTRACT FROM AUTHOR]

Purpose: Evidence-informed decision-making is considered best practice when choosing interventions in applied settings across health, social care and education. Developing that evidence base, however, is not straightforward. The pupose of this paper is to describe the process implemented by the Sharland Foundation Developmental Disabilities Applied Behavioural Research and Impact Network (SF-DDARIN) that systematically develops an evidence base for behaviorally based interventions. Design/methodology/approach: In this case study, the progressive research steps undertaken by the SF-DDARIN to develop the evidence base for an online reading intervention, the Headsprout® Early Reading programme (HER®), which uses behavioural principles to promote learning to read, are described. Findings: A series of discrete projects targeting gaps in the evidence base for HER® led to funding two randomised controlled trials in England, one in education and one in health and social care. Originality/value: This case study illustrates an original, creative and effective way of collaborating across academic research departments and applied settings to extend the evidence base for a chosen intervention systematically. [ABSTRACT FROM AUTHOR]

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]

Background: International studies show that adults with intellectual and developmental disabilities (IDD) are disproportionately represented in the criminal justice and forensic mental health systems; however, it is difficult to capture their involvement across systems in any one jurisdiction. Aims: The current study aimed to estimate the prevalence of IDD across different parts of the criminal justice and forensic mental health systems in Ontario and to describe the demographic and clinical profiles of these individuals relative to their counterparts without IDD. Methods: This project utilised administrative data to identify and describe the demographic and clinical characteristics of adults with IDD and criminal justice or forensic involvement across four sectors: federal correctional facilities, provincial correctional facilities, forensic inpatient mental health care and community mental health programmes. Questions were driven by and results were contextualised by a project advisory group and people with lived experience from the different sectors studied, resulting in a series of recommendations. Results: Adults with IDD were over‐represented in each of the four settings, ranging from 2.1% in federal corrections to 16.7% in forensic inpatient care. Between 20% (forensic inpatient) and 38.4% (provincial corrections) were under the age of 25 and between 34.5% (forensic inpatient) and 41.8% (provincial corrections) resided in the lowest income neighbourhoods. Medical complexity and rates of co‐occurring mental health conditions were higher for people with IDD than those without IDD in federal and provincial corrections. Conclusions: Establishing a population‐based understanding of people with IDD within these sectors is an essential first step towards understanding and addressing service and care needs. Building on the perspectives of people who work in and use these systems, this paper concludes with intervention recommendations before, during and after justice involvement. [ABSTRACT FROM AUTHOR]

The article discusses the complex genetic architecture of intellectual and developmental disabilities (IDDs) and neuropsychiatric disorders (NPDs). It highlights that both rare and common genetic variants interact to influence behavioral and clinical phenotypes in IDDs. The article presents several study paradigms and conceptual frameworks that emphasize a genetics-first approach to understanding IDDs. It also explores the importance of studying phenotypes at multiple levels of analysis and the role of sensory and motor behaviors in elucidating neurodevelopmental pathways. The article concludes by suggesting that a better understanding of the biological mechanisms underlying IDDs can inform targeted treatments based on biological subtypes. [Extracted from the article]

Legislations for persons with disabilities emerged in the 1990s in India, providing them with rights and entitlements. Aligned with the UNCRPD, the Rights of Persons with Disabilities Act (2016) supports improved programmes and services. There are no exclusive policies for those with intellectual and developmental disabilities. Different government departments and non‐government organisations provide services including centrally sponsored programmes to persons with disabilities and enable them to exercise their rights. For example, rehabilitation and provision of aids and appliances lie with the Ministry of Social Justice and Empowerment, right to education is with the Ministry of Education, and, early intervention and health services and related supports are with the Ministry of Health. In India, non‐government organisations also play a vital role in health care services. In this paper, we discuss the existing health care systems including medical services in India for persons with disabilities with a specific focus on persons with intellectual and developmental disabilities. The discussion include how the system was evolved and what is in place today, the coverage, strengths, and limitations in the system. We have tried to provide a comprehensive description of existing policies, and practices of health care as well as the cultural influences with regard to health care for people with intellectual and developmental disabilities in India. [ABSTRACT FROM AUTHOR]

Irish health and social care policy has undergone a significant evolution in recent years to address inequalities, improve standards and update models of care to incorporate a rights‐based approach. The following account describes the Irish health and social care system, as delivered in the Republic of Ireland, and details how it operates for those with intellectual and developmental disabilities. The paper is informed by government policy, legislation, reviews, national plans, parliamentary reports, and population data. Clear progress has been made in shifting from a service‐led to a rights‐based, service‐user led model of care; however, resourcing this fundamental transition in approach to service provision poses challenges for the Irish State. [ABSTRACT FROM AUTHOR]

The Italian healthcare system is public and freely available to the population. With a few exceptions, there are no distinctions between the healthcare services and practices (e.g., primary care) designed for the general population and those for individuals with intellectual and developmental disabilities (IDD). Prevalence data on adults with IDD are lacking and most disability policies and resources are designed for people with disabilities broadly defined, without specification based on disability type or severity level. Recent legislation provides specific supports for individuals with severe disabilities or autism spectrum disorder. This paper describes the legislation and health policies developed for people with disabilities, the organization of the Italian healthcare system, and the organization of disability support services and healthcare services. Strengths (e.g., availability of many financial resources, adoption of biopsychosocial approach to disability, presence of innovative projects to address the healthcare needs of people with IDD) and weaknesses (e.g., lack of distinction among disability types, territorial differences, lack of disability training of healthcare providers) of the current healthcare practices are reported and discussed. [ABSTRACT FROM AUTHOR]

This paper aims to give a short description of Swedish healthcare provision for persons with intellectual and developmental disabilities (IDD). Swedish persons with IDD should have access to the general healthcare system on the same terms as the general population, and thereby enjoy equal opportunities for healthcare of good quality. Reports from government agencies and interest groups, however, describe a decentralised and fragmented healthcare system that requires significant coordination; a lack of adjustments; a lack of specialised healthcare professionals; and gaps in healthcare provision. Research in recent years has reported unequal access to planned healthcare; excess mortality and premature deaths; and insufficient or inadequate support in end‐of‐life care. We conclude that health inequalities and healthcare challenges faced by Swedish persons with IDD might be caused by obstacles at several structural levels. Allowing persons with IDD to access timely and adequate healthcare requires the development of better opportunities for coordination of healthcare and social services, as well as training for healthcare professionals and direct support staff. [ABSTRACT FROM AUTHOR]

Family quality of life (FQOL) is a multidimensional social construct that can be used to enhance a family's well‐being by providing a framework to plan interventions and evaluate outcomes. Although researchers and policymakers see value in the FQOL domains and dimensions, families and practitioners are often skeptical of lengthy evaluations and aggregate scores. Furthermore, many practitioners find that family caregivers who require support and services overwhelmingly focus on the family member needing the most care. In doing so, they perceive their situations in a "spaghetti‐like" way. This strong focus on one aspect of the situation, or one "spaghetti" strand, can result in conversations about planning and implementing interventions becoming cyclical, like a messy tangle of strands. The FQOL lens can be used in intervention planning to transform overlapping spaghetti‐like thoughts into a waffle‐like system of interconnected and compartmentalized thoughts. The purpose of this paper was to describe the individual‐level application of the FQOL theory to plan and evaluate the benefits of a peer‐mediated family empowerment project for aging caregivers of adults with intellectual/ developmental disabilities in Michigan, USA. The study provides examples of how individual‐level FQOL evaluation at pretest informed the development of individualized action plans that focused on the strengths, desires, and challenges of 100 aging families in this statewide project. [ABSTRACT FROM AUTHOR]

In this paper, we discuss the applicability of the consensus document, prepared by the Special Interest Research Group on quality of life (QoL) of the International Association for the Scientific Study of Intellectual Disabilities in August 2000, for persons with Profound Intellectual and Multiple disabilities (PIMD). We compare our findings from previous empirical research with some elements of the themes and principles of the consensus document. We will reflect (1) on the domains of QoL mentioned in the consensus document, and (2) on the assessment by proxies. We recommend reflection on the following aspects when composing a new consensus document, which includes QoL of persons with PIMD: first, reconsider whether all eight domains are useful in care practice for—and research about—persons with PIMD. We assert that the domains of health, well‐being, capability to influence the environment, and also (family) relationships, are particularly relevant for the QoL of persons with PIMD and, second, accept interpretation of signals and signs by proxies in the assessment of QoL in persons with PIMD and do not value this as second best. [ABSTRACT FROM AUTHOR]

Autistic children and their caregivers in Argentina often lack access to information, resources and evidence-based interventions. Caregiver empowerment may help support families to uphold their child's rights and access suitable education and support. This study aimed to examine the perceptions on empowerment of caregivers of autistic children in Argentina. This was a phenomenological, qualitative study. We conducted 32 semi-structured individual interviews remotely. Participants included caregivers, health service providers, non-governmental organisation representatives, special education teachers and policy representatives. Data were analysed thematically. We developed three main themes: Caregiver agency: from intuitive coping strategies to entrepreneurship; 'I had to cut down on therapy': Economic instability and inequality affecting service access; and Equipping caregivers to be empowered. Both caregivers and professionals talked about the contribution of socio-economic inequalities to caregivers' sense of disempowerment. Caregivers identified coping strategies and discussed their experiences with advocacy. They expressed that in-person and online support groups have an empowering effect. Based on participant views, strategies supporting caregiver empowerment may involve: interventions are co-designed by professionals and caregivers; focusing on caregiver mental health; and addressing the profound impact of poverty on the quality of life of families. Caregivers of children with developmental disabilities, including autism, often struggle to access services, information and resources in Argentina. Little is known about how caregivers can be empowered to support their children as they wish to in the Argentinian setting. We spoke with 32 people online to understand existing and potential practices of supporting caregivers. The people we spoke with included caregivers, health service providers, non-governmental organisations' representatives providing services or technical support, special education teachers and policy representatives. Participants said that poverty, and inequalities in accessing support, impact how caregivers can support their children. They mentioned examples that help caregivers feel empowered, such as peer support groups and caregiver training. Many caregivers spoke about how they became advocates for their children and how they developed initiatives such as advocacy campaigns and well-being support groups. Caregivers in Argentina may be empowered in various ways, and the following strategies can improve empowerment: strengthening collaboration between professionals and caregivers; focusing on caregiver mental health; and addressing the profound impact of poverty on the quality of life of families. [ABSTRACT FROM AUTHOR]

The COVID-19 pandemic has strained the resources of the world's healthcare systems. Most individuals with neurodevelopmental disabilities (NDDs) experience significant mental health issues and face substantial barriers in accessing appropriate supports which have been exacerbated during the pandemic. It is unknown the extent to which COVID-19 impacted the demand for and effectiveness of inpatient care for those with NDDs. The impact of COVID-19 on the number of admissions of youth with NDDs to pediatric inpatient psychiatry units, as well as their functioning and length of stay during the first two years of the pandemic was analyzed using Bayesian structural time series models. Admission data of youth with NDDs from four pediatric inpatient units in Alberta, Canada (n = 2144) was examined. Inpatient admissions of youth with NDDs significantly increased following the onset of the pandemic. Compared to the period prior to the pandemic, patients with NDDs had significantly worse overall functioning and received fewer days of treatment. These findings highlight the need for increased resources to support the mental health needs of this vulnerable population and are consistent with other studies in the general population examining the utilization of inpatient psychiatric units during the pandemic. [ABSTRACT FROM AUTHOR]

Background: While complementary feeding can be challenging, little emphasis has been placed on the introduction to food texture/pieces, especially in terms of neurodevelopmental outcomes. This study aims to determine the association between the timing of introduction to food pieces during infancy and neurodevelopment in early childhood. We hypothesized that late introduction to food texture/pieces relates to unfavorable neurodevelopmental outcomes. Methods: Families (n = 18329) were recruited from the general population during the nationwide ELFE (Étude Longitudinale Française depuis l'Enfance) birth cohort in France, and 8511 were selected for a complete case analysis. Age at introduction to food pieces was determined based on repeated assessments during the first year. A range of neurodevelopmental outcomes among children were assessed using validated instruments, i.e. composite scores at 1 and 3.5 years, and a score for language acquisition at 2 years. Risk for developmental delay at 3.5 years was defined based on a developmental quotient (DQ) below 90 according to the child's chronological age and the respective composite score at this age. We used linear regression modelling to evaluate associations between age at introduction to food pieces and the standardised neurodevelopmental scores, while logistic regression models were used in the analyses according to the risk for developmental delay. Results: Our findings highlight consistent associations between late introduction to food pieces (i.e., after 10 months, compared to early (before 8 months)) and lower estimates of standardised neurodevelopmental scores at ages 1, 2 and 3.5 years (-0.35 [-0.40; -0.30], -0.15 [-0.20; -0.10] and − 0.18 [-0.23; -0.13], respectively). Infants introduced to pieces late were also more likely to be at risk for developmental delay according to DQ < 90 (OR [95%CI] = 1.62 [1.36; 1.94]). Conclusions: This study shows that late introduction to food pieces (> 10 months) is related to lower neurodevelopmental scores. Given the challenges that complementary feeding may pose, concerted efforts are required to enhance our understanding of the sensory aspects of early diets and to ultimately provide guidance. [ABSTRACT FROM AUTHOR]

Introduction: Challenging behaviour (CB) is a common issue among children with autism spectrum disorder or intellectual and developmental disability. Mental health applications are low-threshold cost-effective tools to address the lack of resources for caregivers. This pre-post study evaluated the feasibility and preliminary effectiveness of the smartphone app ProVIA-Kids using algorithm-based behaviour analysis to identify causes of CB and provide individualized practical guidance to manage and prevent CB. Methods: A total of 18 caregivers (M= 38.9 ± 5.0) of children with a diagnosis of autism spectrum disorder (44%), intellectual and developmental disabilities (33%) or both (22%) aged 4-11 years (M= 7.6 ± 1.8) were included. Assessments were performed before and after an 8-week intervention period. The primary outcome was the change in parental stress. Caregiver stress experience due to CB was also rated daily via ecological momentary assessments within the app. Secondary outcomes included the intensity of the child's CB, dysfunctional parenting, feelings of parental competency as well as caregivers' mood (rated daily in the app) and feedback on the app collected via the Mobile Application Rating Scale. Results: We observed increases in parental stress in terms of conscious feelings of incompetence. However, we also saw improvements in parental stress experience due to CB and overreactive parenting, and descriptive improvements in CB intensity and caregiver mood. Discussion: ProVIA-Kids pioneers behaviour analysis in a digital and automated format, with participants reporting high acceptance. Pilot results highlight the potential of the ProVIA-Kids app to positively influence child behaviour and caregiver mental health over a longer intervention period. [ABSTRACT FROM AUTHOR]

Purpose: Understanding the experiences of families of children with developmental language disorder (DLD) during COVID-19 educational disruptions is essential for designing responsive supports during pandemic recovery efforts and beyond. This qualitative study describes the experiences of families of first-and second-grade children with DLD during the pandemic as compared to the experiences of families of typically developing (TD) peers. Method: A conventional content analysis approach was used to analyze caregivers' written responses to open-ended questions regarding their perceptions of COVID-19 educational disruptions. Responses were analyzed separately by group: caregivers of children with DLD (n = 23) and caregivers of TD children (n = 22). Results: Four categories of caregiver responses were generated for each group: impacts on children, remote learning challenges, impacts on caregivers, and protective factors. For both groups, concerns about the child's well-being and literacy learning were most prevalent and prevailed over concerns about oral language. Most caregivers in each group described negative impacts of educational disruptions on their cdhildren. As compared to caregivers of TD children, caregivers of children with DLD reported higher rates of remote learning challenges and more negative impacts on literacy learning, speech and/or language, and education in general. DLD caregivers also shared fewer positive comments and remarks related to protective factors. Conclusions: Results indicate that families of children with DLD may have experienced more challenges during COVID-19 educational disruptions as compared to families of TD peers. Thus, responsive research and supports for these families is essential. [ABSTRACT FROM AUTHOR]

This study aimed to determine the effectiveness of a designed training program for nurses toward early detection of developmental disabilities among children aged 0–3 years. A group of 21 licensed nurses with professional experience ranging from 5–11 years participated in the study. The participants completed the measurements to evaluate their current knowledge, practice, and perception pre- and post-training program, as well as during a follow-up, in relation to early detection of disabilities. The results showed highly statistically significant difference between the studied nurses' total knowledge, perception, and practice in pre- and post-program application (p = 0.01). However, there was no statistically significant difference between the post-program and follow-up application (p = 0.180). [ABSTRACT FROM AUTHOR]

The article focuses on the growing use of telemedicine in developmental pediatrics, driven by the rapid adoption of telehealth technologies, especially during the COVID-19 pandemic. Topics include the role of telemedicine in enhancing healthcare access, the challenges posed by the scarcity of pediatric subspecialists, and the difficulties that individuals with developmental disabilities face in obtaining adequate care.