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The article discusses the commentary on a stimulus paper which discusses the medical practices that objectively question human life affected by intellectual and developmental disability (IDD). Topics include growth in offering commercially available blood tests to screen for genetic abnormalities in pregnant mothers in some countries, resulting in abortions; and exploring how the decision is taken to legally terminate premature babies with severe disabilities and life threatening conditions.

The International League Against Epilepsy ( ILAE) presents a revised operational classification of seizure types. The purpose of such a revision is to recognize that some seizure types can have either a focal or generalized onset, to allow classification when the onset is unobserved, to include some missing seizure types, and to adopt more transparent names. Because current knowledge is insufficient to form a scientifically based classification, the 2017 Classification is operational (practical) and based on the 1981 Classification, extended in 2010. Changes include the following: (1) 'partial' becomes 'focal'; (2) awareness is used as a classifier of focal seizures; (3) the terms dyscognitive, simple partial, complex partial, psychic, and secondarily generalized are eliminated; (4) new focal seizure types include automatisms, behavior arrest, hyperkinetic, autonomic, cognitive, and emotional; (5) atonic, clonic, epileptic spasms, myoclonic, and tonic seizures can be of either focal or generalized onset; (6) focal to bilateral tonic-clonic seizure replaces secondarily generalized seizure; (7) new generalized seizure types are absence with eyelid myoclonia, myoclonic absence, myoclonic-atonic, myoclonic-tonic-clonic; and (8) seizures of unknown onset may have features that can still be classified. The new classification does not represent a fundamental change, but allows greater flexibility and transparency in naming seizure types. [ABSTRACT FROM AUTHOR]

Developmental and epileptic encephalopathies (DEE) are a heterogenous group of conditions characterized by the co-occurrence of epilepsy and intellectual/developmental disability. Despite several known DEE-related genes, including these encoding ion channels, still many cases remain without molecular diagnosis. Here, we present a 2-year-old girl with severe DEE in whom whole exome sequencing revealed de novo p.(Val471Leu) variant in the KCNC2 encoding Kv3.2, a voltage-gated potassium channel. To the best of our knowledge, this is the third DEE case due to KCNC2 mutation. Our clinical and molecular findings, particularly the recurrence of p.(Val471Leu) in patient with similar clinical phenotype, further support KCNC2 as a novel DEE-associated gene., (© 2021 Wiley Periodicals LLC.)

Aim: The aim of the study was to compare parental satisfaction items before and after the implementation of The Ages & Stages Questionnaires (ASQ) as part of the health check-up., Methods: ASQ was implemented in regular health check-ups of infants up to two years of age in 9 Norwegian well-baby clinics. After the infant's two years' health check-ups, a questionnaire-based survey among 652 families before and 562 families after intervention was conducted. Descriptive analyses and ordinal logistic regression were used to report and compare parental satisfaction items before and after the project., Results: Parents reported high satisfaction with well-baby services both before and after the implementation of ASQ, and ninety-six per cent recommended other well-baby clinics to use ASQ. Some significant differences appeared, before the implementation of ASQ, parents were more satisfied with the support they received regarding parenting and child development in general and information about the child's physical health. After ASQ was implemented, parents were significantly more satisfied with the information they received about 'the child's mental health'., Conclusion: Developmental screening in well-baby clinics in Norway is acceptable among parents with young children. The use of standardised instruments must not come at the expense of listening to parents' concerns., (©2019 Foundation Acta Paediatrica. Published by John Wiley & Sons Ltd.)

A review of the article "Always trying to walk a bit of a tightrope": The role of social care staff in supporting adults with intellectual and developmental disabilities to develop and maintain loving relationships" is presented.

Many people with an intellectual and developmental disability (IDD) are biologically, socially, and economically/politically vulnerable to developing SARS‐COV‐2 (COVID‐19) compared to the general population. Most governments have developed public‐health policies and strategies to address the challenges that COVID‐19 has presented. These policies and strategies have been based upon the general population and in fact could be detrimental to the health and well‐being of people with IDD. This paper provides a review of the key learning points emerging from the COVID‐19 literature, together with guidance for the provision of services and government interventions for people with an IDD for future pandemics. Using guidance from the Joanna Briggs Institute, a scoping review was used to explore the current literature (scientific and grey) on IDD and COVID‐19. Three core themes emerged from the review. Prevention/protection: User‐friendly accurate accessible information, handwashing and social distancing, Personal Protective Equipment, shielding, track and trace, testing, vaccine compliance/hesitancy, and training. Mitigation: Making reasonable adjustments both to where people live, and to community healthcare/clinical practice; and the use of technology as a pandemic‐response strategy. Treatment/Management: Access to acute hospitals and lifesaving equipment, using a suitable clinical fatality assessment instrument, stopping Do Not Resuscitate notices, individualised care plans and hospital passports, family/paid carers to support people in hospitals; and use of telehealth in clinical care. This is the first international scoping review that provides a narrative synthesis of emerging themes related to the COVID‐19 pandemic and people with an IDD. This paper highlights themes related to preventing, mitigating, and treating/managing the care of this population during the COVID‐19 pandemic, which can inform future public‐health policies. This paper also exposes the negative impacts of public‐health interventions in both High‐Income Countries and Low‐Middle Income Countries for this population including lapses in upholding human rights. These data provide a basis for learning from the COVID‐19 pandemic in planning for future pandemics. [ABSTRACT FROM AUTHOR]

This paper draws together about 20 years of research work and discovery and the development of a resource about pain assessment and management in children with profound cognitive impairment. The animation tells the story of an imagined child called Lily and the skills her mother uses and the challenges that her mother faces in assessing and managing Lily's pain. The animation is built on stories drawn from qualitative research findings, conversations while in clinical practice and with members of the general public, parent advisers and other sources. Most of the "evidence" came from stories shared by parents and healthcare professionals. This paper draws on some elements of socio‐narratology and is predicated on the basis that stories are important and they can act on and with us. By using an animation to tell Lily's story, the intention was to communicate research findings to a wider and more diverse audience than the typical readership of an academic journal. The intention was to act in and on people's consciousness about children's pain and to strengthen relationships and create bonds between clinicians, parents, and children in pain to make their dialog more social, connected, and meaningful. All three of us—the researcher, the writer, and the animator—have been marked and "re‐shaped" by our work related to creating Lily; we have learned more about children like Lily and their mothers, and we have learned more about ourselves and our humanity. This animation is still a story in progress, a story 'in the wild', a story (and a resource) we would like you to re‐tell and share. The story of Lily's pain aimed to change the lives of parents and children and professionals. Our hope is that you can be part of that change. [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]

Owing to the different models of disablement in different religions and cultures around the world, social and aesthetic representations of intellectually disabled people are diverse in various societies. Disability is perceived in a different way in India than in the West. There are very few studies on the complex role of Indian mainstream Hindi cinema in the representation of intellectual and developmental disabilities in India. This paper explores the potential of shifting representations of intellectual and developmental disability in the late twentieth and early twenty‐first century Bollywood films in the context of multiple aesthetic challenges they pose. The shift in screen image of intellectual impairment is strongly related to the shifting and ambiguous sociocultural model of personhood in India. In earlier Indian Hindi films, characters with intellectual disabilities were depicted in terms of good/bad moralistic labels, compromised body image, leading to aesthetic undesirability. In later Hindi films, they were instead represented as enduring human beings. In short, in earlier Hindi films, there was a discriminatory hegemonic bias in the depiction of intellectually disabled characters, in contrast to that in later Hindi films, where they were depicted in richly diverse perspectives. The changing artistic parlance becomes even more interesting in the context of major developments in Indian governmental policies and rights for the disabled in the last two decades. Thus, the paper highlights that contemporary Hindi films urge the audience to consider intellectual and developmental disability as a multilayered issue and rather than merely as a disease. Accessible summary: Our ideas about disability are linked with those of family, religion and tradition in a particular society.Cinema also reflects our perceptions and concepts of disability.This paper is about the how people with intellectual disabilities have been shown in Hindi cinema in the last 30 years, and how intellectual disability is understood in India.In Hindi cinema, intellectually disabled characters are represented in a way that is slightly different from those in Western literature and films.Research on representations of intellectual disability in cinema is important as it can stimulate healthy discussions on a more empathetic society with a better understanding of the various facts related to intellectual disability. [ABSTRACT FROM AUTHOR]

Background: Women with intellectual and developmental disabilities face poorer reproductive and pregnancy outcomes partially due to health care inequity. Our objective was to conduct a scoping review of reproductive and pregnancy related health care among women with intellectual and developmental disabilities. Methods: We systematically reviewed three databases for keywords pertaining to pregnancy, reproductive health, and intellectual and developmental disabilities. Two reviewers screened abstracts and extracted full text. We synthesised included papers, identifying common themes. Results: Thirty‐six papers met review criteria. Women with intellectual and developmental disabilities had lower fertility rates and were less likely to receive adequate sexual education compared to peers. While most women received prenatal care, uptake was lower and received later than women without intellectual and developmental disabilities. Conclusions: Pregnancy‐related health care is often lacking for women with intellectual and developmental disabilities. There are gaps inhibiting our understanding which prevents action to reduce health disparities. [ABSTRACT FROM AUTHOR]

Background: Adjectives are essential for communication, conceptual development and academic success. However, they are semantically and syntactically complex and can be particularly challenging for children with Developmental Language Disorder (DLD). Surprisingly, language interventions have not typically focused on this important word class. Aims: (1) To provide a supportive and accessible primer on adjectives for practitioners; (2) to explore how the SHAPE CODINGTM system can be adapted to support adjective learning in DLD; and (3) to provide practical recommendations on how to support adjective learning in clinical practice and education. Methods/Procedure: We synthesise linguistic and psychological research on adjective semantics, clinical insights into DLD and pedagogical practice supporting this population. Main Contribution: We address the lack of specific training in the nature and acquisition of adjectives for speech and language therapists (SLTs) by providing an accessible primer. We also provide an innovative guide detailing how an established metalinguistic intervention might be adapted to support adjective learning. Conclusions/Implications: Without targeted support for adjective learning, the communicative potential of children with DLD is compromised. Our recommendations can be used across a range of therapeutic and educational contexts to guide SLTs and teaching staff in developing practice in this area. What this paper adds: What is already known on the subject: Adjectives are an essential word class needed for effective communication. They are also vital to successfully achieve academic objectives across all curriculum areas. For example, most subjects require children to be able to describe, evaluate, compare and discriminate different events, objects or techniques. Children with Developmental Language Disorder (DLD) have deficits in various domains of language that can affect adjective learning and use. What this paper adds to existing knowledge: Despite the importance of adjectives, speech and language therapists (SLTs) and other professionals supporting language development rarely receive specific training regarding their structure and meanings, and how to teach and support their use. This article provides an accessible primer on the many subtypes of adjectives and how these behave syntactically and semantically. It explores how adjective teaching could be enhanced for children with DLD by adapting an established metalinguistic technique and provides practical recommendations for implementing this approach. What are the potential or actual clinical implications of this work?: By raising awareness of the complexities of adjectives and providing strategies to support their acquisition by children with DLD, this article will enable SLTs and teaching staff to improve their understanding and practice in this area and, with further research, to develop robust, effective interventions for children with DLD. This will contribute to enhancing the long‐term academic, social and employment success of children with DLD. [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]

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]

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]

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: Children with developmental language disorder (DLD) have deficits in verbal and non‐verbal processing relative to typically developing (TD) peers, potentially reflecting difficulties in working memory, processing speed and inhibition of interference. We examined working memory in children with DLD using the serial‐order‐in‐a‐box–complex span (SOB‐CS) interference‐based model, which posits a time‐based mechanism, free time, that governs how interference affects processing performance. Aims: (1) To determine the degree to which children with DLD and TD children differ in the amount of free time available during working memory tasks, and whether potential group differences in free time differ depending on the domain of task demands? (2) To determine the relationship between free time and interference effects on working memory accuracy in children with DLD relative to TD peers. Methods & Procedures: We examined the relationship between free time and working memory in children aged 9–13 years with DLD relative to age‐matched TD peers. Working memory tasks involved five conditions that varied verbal versus non‐verbal task demands in an interference processing phase relative to a recall test phase. Free time was the time between response on the interference processing task and onset of the recall test phase. Outcomes & Results: DLD and TD groups did not differ in total free time in any condition. Results indicated group differences in the relationship between free time and accuracy in the conditions involving verbal recall, but not non‐verbal recall. In the verbal‐only condition, relatively more free time was associated with worse accuracy for the DLD group, but with better accuracy for the TD group. In the condition with verbal recall paired with non‐verbal interference processing, relatively more free time was associated with better accuracy for the DLD group, but not for the TD group. Conclusions & Implications: The overall findings suggest that free time between cognitive operations is positively associated with working memory for both verbal and non‐verbal recall, except in the presence of high verbal interference for the DLD group (i.e., verbal interference paired with verbal recall). This finding may reflect poor encoding and attention under particularly challenging verbal processing demands for the DLD group. This study also demonstrates the importance of considering the interrelationships between processing speed and interference in working memory performance. What this paper adds: What is already known on the subject: DLD is characterized by core deficits in verbal processing, but also deficits in non‐verbal processing. Processing‐based hypotheses of DLD—limited verbal working memory, slowed processing speed and inefficient inhibition—do not fully account for behavioural profiles in DLD when considered separately, yet there is evidence suggesting interrelationships among these factors. What this paper adds to existing knowledge: The current study tests the key mechanism posited by a theoretical framework that has the potential to integrate these processing‐based hypotheses. Our findings indicate that the effect of this mechanism differed in DLD relative to TD peers in the presence of high verbal task demands. Our findings also demonstrate the importance of considering the interrelationships among cognitive processes in children with DLD. What are the potential or actual clinical implications of this work?: In practice, results from the current study suggest that children with DLD may benefit from supplementing verbal information with non‐verbal information and from pauses between successive presentations of verbal information. These strategies may support their ability to maintain and act on information during verbal processing. [ABSTRACT FROM AUTHOR]

Background: Non‐standardized assessment tools are preferred when assessing communication of individuals with developmental disabilities. Currently, there are limited tools available for assessing this population. Informant report tools such as the Pragmatics Profile (PP) of Everyday Communication Skills are beneficial in gathering a representative view of an individual's communication. However, the PP is out of print and outdated, requiring revisions to meet contemporary assessment needs of speech–language therapists (SLTs). Aims: To seek consensus from an international panel regarding revising the Pragmatic Profile by (1) updating language and terminology, and (2) development of an online tool. Methods & Procedures: A total of 13 experienced SLTs and researchers in the disability field participated in a modified Delphi study including an initial online meeting followed by an anonymous four‐round survey. Participants reviewed the relevance and wording of questions in the original preschool, school‐age and adult versions to create a single combined version of the PP. In each Delphi round, the level of consensus was calculated and qualitative comments were analysed using thematic analysis. Outcomes & Results: A revised online version of the PP was created including 64 questions. Qualitative analysis illuminated key concepts in the creation of a revised form including the need for plain and age‐neutral language, which is inclusive of all communication modalities and physical impairments, and identifies behaviours that have the potential to be communicative acts. Using conditional logic, users are navigated to the appropriate questions based on the intentionality level of the individual rather than their age. Conclusions & Implications: This study resulted in the revision of a valued assessment tool appropriate for current disability service provision that identifies communication along the continuum of intentionality rather than age. WHAT THIS PAPER ADDS: What is already known on this subject: Non‐standardized tools are appropriate when assessing communication of individuals with developmental disabilities. However, there are limited published tools suitable for this population with several of them out of print, making it difficult to conduct a holistic assessment. What this study adds to the existing knowledge: This study resulted in the creation of an online PP based on experts' opinion. The revised PP modified the primary focus of the tool from age‐ to skill‐based whereby questions are targeted according to intentionality level. Revisions included plain language, and inclusion of all communication modalities and physical impairments via a series of prompts to ensure that the information provided by informants is accurate and relevant. What are the potential or actual clinical implications of this work?: The revised PP adds to the toolkit of an SLT working with individuals with a developmental disability and allows for accurate reporting of functional communication. Guided by experts' opinion, the revised PP is likely to be highly valued in the increasingly technological world in which we live. [ABSTRACT FROM AUTHOR]

Background: Cognitive impairment of intellectual developmental disorders (IDD) is determined by several different combinations of specific cognitive alterations. People with IDD present a rate of mental health problems that is up to 4 times higher than that of the general population. Despite this, the relationship between specific cognitive dysfunctions and co‐occurring mental disorders has not been adequately studied. The aim of the present paper is to investigate the association between specific cognitive dysfunctions and specific psychiatric symptoms and syndromes in people with IDD. Methods: One hundred and twenty adults with mild to moderate IDD living in residential facilities underwent a clinical and instrumental assessment for specific cognitive and psychopathological features. Results: Participants with IDD and ASD have significantly lower scores compared to those without respect to who has not the diagnosis on the Processing Speed Index (PSI) and Perceptual Reasoning Index (PRI) on the WAIS‐IV and higher time scores on the TMT A. Moreover, there is a significant association between years of hospitalisation and TMT B and TMT B A time scores; the longer a participant with IDD was hospitalised, the worse their performance on the TMT. Although not statistically significant, many psychopathological clusters showed substantial cognitive profiles. Conclusions: Although further research is needed, neuropsychological and IQ tests scores seem to be differently associated to various psychopathological conditions co‐occurring with IDD, and with ASD especially. Cognitive assessment seems to support diagnosis and treatment of psychopathological co‐occurrences in persons with IDD, also in consideration of indirect implications including a better knowledge of the patient's characteristics beyond IQ deficit. [ABSTRACT FROM AUTHOR]

A growing body of knowledge highlights the negative impact of the COVID‐19 pandemic on the health and well‐being of many people with intellectual and developmental disabilities (IDDs) and their caregivers. The underlying reasons are not only due to biomedical factors but also ethical issues. They stem from longstanding and pervasive structural injustices and negative social attitudes that continue to devalue people with IDD and that underlie certain clinical decisions and frameworks for public‐health policies during this pandemic. Unless these fundamental ethical shortcomings are addressed, pandemic responses will continue to undermine the human rights and well‐being of people with IDD. This paper proposes an ethics framing for policy and practices regarding clinical care and public health based on Martha Nussbaum's approach to Capability Theory. Such a framework can reorient healthcare professionals and healthcare systems to support the capabilities of people with IDD to protect, recover, and promote health and well‐being. It could be applied during this pandemic and in planning for future pandemics. The paper presents some practical recommendations that follow from applying this framework. [ABSTRACT FROM AUTHOR]

ABSTRACT In the United States, 37 states and 4 territories allow for the termination of parental rights (TPR) due to parental disability. Twenty‐eight of these states and all four of the territories specifically include parental intellectual developmental disability (IDD). Policies that call for the TPR based on factors outside of parental abuse or neglect have myriad negative effects on individuals, families and communities, including long‐term adverse health outcomes for children who have been removed from parental custody, delays in prenatal care for pregnant people whose stigmatized identities may result in involuntary TPR and an increased burden on already overtaxed child welfare systems. This paper analyses policies and proposes an alternative policy modelled after advocacy from other groups of parents with marginalized identities. [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]

Aim: To describe the development and initial psychometric evaluation of a new, freely available measure, the Autism Symptom Dimensions Questionnaire (ASDQ). Method: After development and revision of an initial 33‐item version, informants completed a revised 39‐item version of the ASDQ on 1467 children and adolescents (aged 2–17 years), including 104 with autism spectrum disorder (ASD). Results: The initial 33‐item version of the ASDQ had good reliability and construct validity. However, only four specific symptom factors were identified, potentially due to an insufficient number of items. Factor analyses of the expanded instrument identified a general ASD factor and nine specific symptom factors with good measurement invariance across demographic groups. Scales showed good‐to‐excellent overall and conditional reliability. Exploratory analyses of predictive validity for ASD versus neurotypical and other developmental disability diagnoses indicated good accuracy for population and at‐risk contexts. Interpretation: The ASDQ is a free and psychometrically sound informant report instrument with good reliability of measurement across a continuous range of scores and preliminary evidence of predictive validity. The measure may be a useful alternative to existing autism symptom measures but further studies with comparison of clinical diagnoses using criterion‐standard instruments are needed. What this paper adds: The Autism Symptom Dimensions Questionnaire (ASDQ) is a new, freely available measure of autism symptoms.The ASDQ showed reliable and accurate measurement of autism symptoms.The measure had good screening efficiency for autism spectrum disorder relative to other developmental conditions. [ABSTRACT FROM AUTHOR]

Few healthcare providers receive guidance on the unique needs of persons with intellectual and developmental disabilities and mental healthcare needs. Our aim was to develop a tool for health care providers to use as a guide to address the complex needs of this patient population. The development of the Integrated Mental Health Treatment Guidelines for Prescribers in Intellectual and Developmental Disabilities consisted of five steps: focus groups, draft of the guidelines, evaluation of the guidelines, finalization, and dissemination of the guidelines. The focus groups revealed themes in five domains: (1) relationships, communication, and openness; (2) understanding the person, their environment, and culture; (3) importance of an integrated care and wellness approach; (4) consideration of treatment modifications; (5) recommendations from focus group participants regarding the guidelines. These focus groups informed the development of the guidelines. Forty‐three prescribers evaluated the guidelines noting multiple strengths and some recommendations. Based on this feedback the guidelines were modified as needed, finalized, and disseminated. This paper describes the development of the Integrated Mental Health Treatment Guidelines for Prescribers in Intellectual and Developmental Disabilities. An evidence‐informed, easy‐to‐use, web‐based guide with links to best practice resources. These guidelines incorporate integrated health, other mental health approaches, and the input of patients. [ABSTRACT FROM AUTHOR]

Single‐case experimental designs (SCEDs) are a group of methodologies of growing interest, aiming to test the effectiveness of an intervention at the single‐participant level, using a rigorous and prospective methodology. SCEDs may promote flexibility on how we design research protocols and inform clinical decision‐making, especially for personalized outcome measures, inclusion of families with challenging needs, measurement of children's progress in relation to parental implementation of interventions, and focus on personal goals. Design options for SCEDs are discussed in relation to an expected on/off effect of the intervention (e.g. school/environmental adaptation, assistive technology devices) or, alternatively, on an expected carry‐on/maintenance of effects (interventions aiming to develop or restore a function). Randomization in multiple‐baseline designs and 'power' calculations are explained. The most frequent reasons for not detecting an intervention effect in SCEDs are also presented, especially in relation to baseline length, trend, and instability. The use of SCEDs on the front and back ends of randomized controlled trials is discussed. What this paper adds: Single‐case experimental designs (SCEDs) may promote flexibility on how we design research protocols.Randomization in multiple‐baseline designs allows 'power' calculations based on randomization tests.Whenever feasible, N‐of‐1 trials should be preferred to other SCEDs and to group randomized controlled trials. [ABSTRACT FROM AUTHOR]

Understanding science allows students with and without developmental and behavioral‐based (DB) disabilities to better appreciate the world around them as well as prepare them for the growing science‐related job market. However, students in the United States consistently underperform on science achievement tests compared to students from other nations. This underperformance could be attributed, in part to science having many specialized vocabulary terms that are not often taught explicitly, leaving students with incomplete or inaccurate understandings of word meanings. Improving science vocabulary instructional practices may support students with and without DB disabilities in enhancing their science achievement. To address this need, researchers implemented multicomponent multimedia professional development (PD) to support middle‐school science teachers in delivering high‐quality vocabulary instruction in inclusive settings. In this paper, data collected from a study evaluating the efficacy of the PD were analyzed to determine the influence on student outcomes using ANOVA and multilevel modeling methodologies. Though initial results indicate a promising impact on teacher instructional practices, little is known whether teacher participation in the PD affected student science vocabulary and content knowledge growth. Using multilevel modeling, student science knowledge growth was evaluated following their teachers' exposure to the PD. The findings from this study indicate having indirect exposure to PD had a positive effect on science content knowledge for students with and without DB disabilities (N = 980). In addition, the authors found students with DB disabilities whose teachers had access to PD showed a larger gain in science knowledge than general education students whose teachers did not have access to the PD. [ABSTRACT FROM AUTHOR]

Accessible summary: This paper is about how parents adjust to parenting their child who has a developmental disability.We spoke to parents about their experiences and developed a theory to help explain how parents adjust when their child has a developmental challenge.As well as describing the stress, that parents experience, this theory also captures the fulfilment and sense of purpose that parents experience as they parent their child.This research is important because it helps explain what happens for parents after their child's diagnosis and provides suggestions on how services can improve to help families. This paper describes a study exploring the parental response to the diagnosis of their child's developmental disability. A classic grounded theory methodology was used to analyse data comprising 19 interviews and 11 memoirs written by parents. The theory explains how parents adjust to champion their child, who has been identified as having a developmental challenge. At the heart of becoming a champion is a psychological process in which parents refine their perspectives on disability awareness, their aspirations and parenting capacity as they develop their championing skills. Refining perspectives and championing are influenced by two factors: the nature of the child's challenges and service factors. The theory of Confident Championing offers a multivariant model that explains the dynamic nature of the adjustment process, capturing both the stress and the fulfilment and sense of purpose that parents experience. [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 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]

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]

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]

There is a gap between the desired outcomes of social inclusion policy and the everyday experiences of people labelled with intellectual and developmental disabilities. Despite belonging rhetorically named in social inclusion policy and practice, belonging is often absent in the lives of people labelled with intellectual and developmental disabilities and remains undertheorised in its relationship to social inclusion. In this paper, we explore the role belonging might play in narrowing the gap between how social inclusion is theorised and how it is experienced. Drawing on critical disability and feminist relational theories, we outline a relational conceptualisation of belonging and use it to 'crip' the construct of social inclusion. Exploring the synergies and tensions that surface when social inclusion and belonging are held together as discrete but interconnected constructs, we name four conceptual shifts and expansions that allow us to see social inclusion differently. Through the centring of the experiences of people labelled with intellectual and developmental disabilities, we explore the ways belonging can help to reimagine inclusion from assimilationist, static, objective and formal towards inclusion as fluid, negotiated, (inter)subjective, (in)formal and intimate. [ABSTRACT FROM AUTHOR]

Background: People with language disorders (including developmental language disorder—DLD) often struggle to learn new words and, for young adults, this could affect their success in future work. Therefore, it is crucial to support their learning of career‐specific vocabulary. However, little published evidence exists regarding the effectiveness of speech and language intervention for older adolescents and young adults with (developmental) language disorder (D)LD within a post‐16 provision. Aims: To investigate whether for students with (D)LD in a post‐16 environment, the addition of direct individual intervention from a speech and language therapist (SLT) teaching course‐specific vocabulary leads to more progress than just in‐course teaching on bespoke vocabulary measures. Methods & Procedures: A total of 28 college‐aged students (11 female and 17 male) with (D)LD (aged 16.0–19.9) participated in a within‐participant study comparing progress with explicit vocabulary intervention plus in‐course teaching versus in‐course teaching alone. The participants were assessed at four time points (3 months pre‐intervention, immediately pre‐ and post‐intervention, 3.5 months after intervention) using bespoke vocabulary assessments with an equal number of nouns, verbs and adjectives. All participants received one‐to‐one vocabulary intervention from their usual SLT for 30 min per week for 9 weeks. The intervention had four main components: (1) to identify intervention focus, (2) to recap previously taught terms (using an online flashcard program), (3) to explicitly teach new words using word maps to help with: creating definition and pictorial representation, identification of word class and investigation of phonological and morphological properties, and (4) to add new words, with their definition and pictorial representation to online flashcard program. Outcomes & Results: The results showed a stable baseline, then during the intervention term significant progress on words targeted only in lessons and significantly greater progress on words targeted both in lessons and SLT sessions. Progress was maintained for 14 weeks. Individuals with initially lower scores showed smaller intervention effects. In general, performance was higher on verbs and on the definition recognition task and lower on the production tasks, but all tasks improved with intervention. Conclusions & Implications: Direct one‐to‐one vocabulary intervention with an SLT can lead to significant gains in knowledge of course‐specific terminology for college‐aged students with (D)LD. The effectiveness of speech and language therapy services for this age group in a wider range of areas of language and social communication should also be investigated. What this paper adds: What is already known on this subject: Very few services exist for young adults with DLD, despite their persisting language difficulties and the detrimental impact of these on their academic attainment and employment prospects. Most careers involve specific vocabulary which is crucial to executing a role successfully and these need to be learned by those looking to move into these careers. However, children, adolescents and adults with DLD struggle to learn new words and may need help in this area. What this study adds to existing knowledge: The young adults with (D)LD received 9 weeks of intervention targeting individualized course‐specific vocabulary (nouns, verbs and adjectives), using word maps to focus on word forms, definitions, morphologically related words and syntactic information such as word class and how to use the word in a sentence. An online learning tool provided regular spaced retrieval practice of previously taught words and their definitions. The participants showed significant progress with learning course‐specific vocabulary from attending lessons. However, they made significantly greater progress on those words which were also targeted in individual SLT sessions, regardless of word class. Progress was maintained over 14 weeks. What are the potential or actual clinical implications of this work?: Direct one‐to‐one vocabulary intervention with an SLT can lead to significantly greater gains in the acquisition of targeted course‐specific terminology for young adults with (D)LD than the vocabulary teaching available in lessons. Individual intervention delivered by SLTs should therefore be offered to this age group of students with (D)LD to maximize their ability to access the academic curriculum and their future careers. Indeed, the broader role of SLTs in helping these young adults to access the world of work and independent living should be further investigated and supported. [ABSTRACT FROM AUTHOR]

Background: Complex syntax is affected by developmental language disorder (DLD) during the school years. Targeting areas of syntactic difficulty for children with DLD may yield useful assessment techniques. Aims: To determine whether wh‐movement can be measured in language samples from typically developing mono‐ and bilingual school‐aged children, and, if so, to provide preliminary evidence of validity by comparison with traditional measures of syntax in a cross‐sectional, known‐groups design. Methods & Procedures: Participants were 48 typically developing children recruited from the Canadian province of Nova Scotia in four groups: monolingual English and bilingual French–English children in early (7–8 years of age) and late (11–12 years of age) elementary school. Language samples were collected and analysed with mean use of wh‐movement, mean length of utterance and clausal density. These measures were compared for effects of age, bilingual development and elicitation task. Outcomes & Results: The results from all measures closely paralleled each other, providing preliminary evidence of validity. Wh‐movement‐based and traditional measures demonstrated similar age‐related and discourse genre effects. Neither demonstrated an effect of mono‐ versus bilingual development. Conclusions & Implications: The results confirm research interest in syntactic movement as an area of language assessment. Further research is required to understand its application to clinical populations. What this paper addsWhat is already known on the subjectComplex syntax is known to be an area of difficulty for children with DLD. Certain syntactic constructions appear to be particularly difficult for these children. Assessments targeting these areas of difficulty are emerging.What this paper adds to existing knowledgeThe paper compares traditional measures of syntax with measures based on wh‐movement. It shows similar results for both types of measures, suggesting construct and convergent validity. Results suggest that syntactic movement is an age‐appropriate area of assessment for elementary school‐aged children's language.What are the potential or actual clinical implications of this work?Language sample assessment measures based on wh‐movement appear promising. The impact of task effects of the discourse genre on assessing syntax must be carefully considered in research and clinical practice. [ABSTRACT FROM AUTHOR]

Background: There is limited evidence concerning the longer term language, literacy and cognitive skills of young adults with developmental language disorder (DLD). Studies that exist suggest continuing difficulties with language and reading, but abilities may change over time. Aims: This study aimed to examine the language, literacy and cognitive skills of young adults with and without DLD. Methods & Procedures: Data were used from the Manchester Language Study data set which was collected from a group of young adults with DLD (recruited originally at 7 years of age from language units—specialist educational resource bases). Participants were assessed on their language, literacy and cognitive functioning when they were aged 24. A comparison group of age‐matched peers (AMPs; also 24 years old) were also assessed. For language and cognition, change in scores between 16 and 24 years was also available for analysis. Finally, self‐rated measures of literacy difficulties were taken at 24 years for functional reading and writing. Outcome & Results: The results indicate that the young people with DLD in this sample continue to perform more poorly as a group on formal oral and written language tests. A small but significant minority of young adults with DLD also report functional reading and writing difficulties compared with AMPs despite reporting reading as often as their peer group. Compared with scores at 16 years of age, this subsample now appears to show slightly less risk of non‐verbal IQ difficulties, showing small but significant 'catch‐up' to AMPs. Conclusions & Implications: These preliminary data suggest that at least some individuals with DLD experience marked linguistic difficulties in adulthood, and that the pathways of language, literacy and cognition are not entirely parallel for this group. Continued support and awareness of challenges for young adults with DLD may be useful. What this paper addsWhat is already known on the subjectIt is known that DLD is long term and persists into adulthood. There has recently been a body of work reporting on the well‐being of this population, as well as their employment, financial status and driving ability. However, there is very little information about language, literacy and cognitive skills beyond school age.What this paper adds to existing knowledgeThis study presents data on language, literacy and cognition from a large cohort of young adults with DLD and their AMPs. In this sample, a large proportion of participants score low on language, with fewer scoring as impaired on literacy and cognition. A significant minority reports difficulties in functional reading. Preliminary analysis appears to suggest that while language development remains depressed, non‐verbal cognitive skills show some catch up over time.What are the potential or actual clinical implications of this work?Increased awareness and continued support for language, literacy and cognition may be useful for young adults with DLD. [ABSTRACT FROM AUTHOR]

Background: Collaborative practice between therapists and parents is a key element of family‐centred care and is essential if we want to address family priorities and needs in interventions. However, collaborative practice is challenging for speech and language therapists (SLTs) and parents. To facilitate collaboration, collaborative practices need to be implemented into speech and language therapy for young children with developmental language disorders (DLD) and their families. Actual change and implementation of collaboration in practice will be successful only when it corresponds with patients' needs, in our case the needs of parents of young children with DLD. Aims: To explore parents' needs in their collaboration with SLTs during therapy for their young child with DLD. Methods & Procedures: Parents of children with (a risk of) DLD in the age of 2–6 years were eligible for participation. We recruited parents via SLTs. Twelve parents of children with DLD participated in semi‐structured interviews about their needs in collaboration with SLTs. We used a phenomenological approach focusing on parents' lived experiences. We transcribed the interviews verbatim. All interviews were read/listened to and discussed by our parent panel, multiple researchers and the interviewer. Two researchers independently analysed the data using the reflective thematic analysis of Braun and Clarke. Outcomes & Results: The analysis of the interviews resulted in six themes: (1) knowing what to expect, (2) knowing how to contribute, (3) feeling capable of supporting the child, (4) trusting the therapist, (5) alignment with parents and children's needs, preferences and priorities and (6) time and space for asking questions and sharing information. Conclusions & Implications: Parents want SLTs to invest time in collaborating with them. Parents need SLTs to empower them to become a collaborative partner and enable them to support their child in daily life. Parents need knowledge about the therapy process and diagnosis and skills in how to support their child's language development. Also, they need emotional support to feel secure enough to support their child, to ask questions to therapists and to bring up their own thoughts and opinions in therapy. Parents' needs are in line with collaborative working as described in literature, which underlines the importance of implementing collaborative working in speech and language therapy for young children with DLD. WHAT THIS PAPER ADDS: What is already known on the subject: Several reviews have explored parents' perspectives on speech and language therapy. Results reveal parents' experiences with speech and language therapy in general, and parents' perspectives on specific topics such as shared decision‐making and parents/therapists roles in therapy. What this study adds: This study adds insights into parents' needs to ensure collaboration with speech and language therapists (SLTs). Parents of young children with developmental language disorders (DLD) need SLTs to invest time to create optimal collaboration. It is important for parents to have enough knowledge about DLD and the SLT process, skills and confidence in how to support their child and opportunities to share thoughts and questions with SLTs. Our results underline the importance of parents being empowered by SLTs to become a collaborative partner. What are the clinical implications of this work?: When children are referred to speech and language therapy, parents often venture into an unknown journey. They need support from SLTs to become a collaborative partner in speech and language therapy. Parents need SLTs to invest time in sharing knowledge, skills and power and align therapy to parents' and child's needs, preferences, priorities and expectations. [ABSTRACT FROM AUTHOR]

Providing high‐quality services to autistic students and their caregivers requires interprofessional collaboration. This paper highlights the importance of collaboration between clinical and school settings to promote integrated and comprehensive care for autistic students and their caregivers. First, we present how autistic students are identified and diagnosed in school and clinical settings, with particular attention to how these processes impact access to services. Next, we present interprofessional collaborative practice (IPC) as a framework to facilitate increased collaboration between school and clinical providers working with autistic students. Key tenets of IPC that address barriers to collaboration and several examples of IPC are outlined. To assure readiness to engage in collaborative practice, we discuss graduate interprofessional education (IPE) as a means to train emerging professionals in IPC for autistic students. Finally, we highlight several examples of IPE training programs specific to autism and related developmental disabilities. Key Points: Collaboration between clinical and school settings promotes integrated and comprehensive care for autistic studentsInterprofessional collaborative practice (IPC) facilitates collaboration between school and clinical providers working with autistic students [ABSTRACT FROM AUTHOR]

Background: Adolescents and young adults with intellectual and developmental disabilities (IDD) have high rates of obesity and low levels of physical activity. This analysis examined changes in light, moderate‐to‐vigorous physical activity (MVPA) and sedentary time, and the association between changes in MVPA and weight loss in adolescents and young adults with IDD and overweight and obesity participating in a 6‐month multi‐component weight loss intervention. Methods: Adolescents and young adults with IDD and overweight or obesity (body mass index ≥ 85 percentile, n = 110, age ~16 years, 52.7% female) and a parent were randomised to one of three intervention groups: face‐to‐face delivery/conventional reduced energy diet (n = 36), remote delivery (RD)/conventional reduced energy diet (n = 39), or RD/reduced energy enhanced stop light diet (eSLD) (n = 35.) Participants were asked to engage in 60 min/day of MVPA on 5 or more days/wk. Participants and a parent attended twice monthly education/behavioural counselling sessions with a health educator to assist participants in complying with dietary and MVPA recommendations. Education/counselling in the RD arms was delivered remotely using video conferencing, and self‐monitoring of MVPA and daily steps was completed using a wireless activity tracker. Education/counselling in the face‐to‐face arm was delivered during home‐visits and self‐monitoring of MVPA and daily steps was completed by self‐report using paper tracking forms designed for individuals with IDD. MVPA, light activity, and sedentary time were assessed over 7 days at baseline and 6 months using a portable accelerometer (ActiGraph wGT3x‐BT). Results: Mixed modelling analysis completed using participants with valid accelerometer data (i.e. ≥4–10 h days) at baseline (n = 68) and 6 months (n = 30) revealed no significant changes in light, moderate‐ MVPA, or sedentary time across the 6‐month intervention (all P > 0.05). Participants obtained 15.2 ± 21.5 min/day of MVPA at baseline and 19.7 ± 19.7 min/day at 6 months (P = 0.119). Mixed modelling indicated no significant effects of group (P = 0.79), time (P = 0.10), or group‐by‐time interaction (P = 0.21) on changes in MVPA from baseline to 6 months. Correlational analysis conducted on participants with valid accelerometer data at both baseline and 6 months (n = 24) revealed no significant associations between baseline sedentary time (r = 0.10, P = 0.40) and baseline MVPA (r = −0.22, P = 0.30) and change in MVPA across the 6‐month intervention. Additionally, attendance at education/counselling sessions (r = 0.26, P = 0.22) and frequency of self‐monitoring of MVPA were not significantly associated with change in MVPA from baseline to 6 months (r = 0.26, P = 0.44). Baseline MVPA (r = 0.02, P = 0.92) and change in MVPA from baseline to 6 months (r = 0.13, P = 0.30) were not associated with changes in body weight across the 6‐month intervention. Conclusion: We observed a non‐significant increase in MVPA (30%), which was not associated with the magnitude of weight loss in a sample of adolescents and young adults with IDD who participated in a 6‐month multi‐component weight loss intervention. Additional strategies to increase MVPA in adolescents and young adults with IDD participating in weight loss interventions need to be developed and evaluated. [ABSTRACT FROM AUTHOR]

An introduction to the journal is presented that focuses on articles related to learning disabilities, with topics covered such as the sexuality of young people with learning disabilities in Malta, sleep hygiene education as an intervention for addressing behavioural sleep problems in children with developmental disabilities, and relationship interventions to boost self-determination of people with learning disabilities as a major issue for social care.

Background: Parental self‐efficacy describes parents' self‐perceived competence in fulfilling their roles. The Parenting Sense of Competence Scale (PSOC) is one of the most commonly used self‐report instruments, allowing for parental self‐efficacy measurement. Methods: This paper summarizes the results of three studies (total N = 2088) conducted to examine factor structure, internal consistency, test–retest reliability and criterion validity of the Polish version of PSOC (PSOC‐PL). The studies were carried out among parents (mothers and fathers) of typically developing 14‐ and 15‐year‐olds (Study 1, n = 1404) as well as among parents of typically developing children aged 6–16 (Study 2, n = 248), parents of typically developing children and children with a diagnosis of autism spectrum disorder (Study 3, n = 436, ages ranged from 6 to 13). Results: Confirmatory factor analysis (Study 1) demonstrated an acceptable fit of the theorized two‐factor model, with theorized Satisfaction and Efficacy factors. The subscales' internal consistencies were satisfactory across all studies (Studies 1–3), and PSOC's test–retest reliability (Study 2) over a 3‐week interval was very high. Parents of children with developmental disorders (Study 3) reported lower efficacy than parents of typically developing children. Conclusions: The results of these three studies attest that the Polish version of PSOC is a reliable and valid measure of parental self‐efficacy beliefs. [ABSTRACT FROM AUTHOR]

COVID‐19 has very publicly had profound impacts on the health system of every country in the world. Over 4.5 million people have lost their lives. School closures worldwide where up to 1.6 billion of the world's children have been out of school, are also prominent in world news. Behind these public impacts are the families. In this paper, we focus on the experiences of families with people with intellectual and developmental disabilities (IDD) through analysis of two data sets: the emerging research literature and contributions from our author team who have lived experience of intellectual and developmental disability in the context of COVID‐19. From these two data sets, we discern five themes of the impact of the pandemic: on health, on education, on services and supports, on families and finally on relationships beyond the family. We conclude with lessons from those living with intellectual and developmental disabilities, the carers and the individuals themselves to draw implications for supporting families in the context of disability during future pandemics. [ABSTRACT FROM AUTHOR]

Background: There is a clear predominance of programmes aimed at improving aspects related to language production in pupils with developmental language disorder (DLD). However, programmes aimed at improving their receptive skills are limited. Aims: The main aim was to assess the effectiveness of an intervention programme for oral language comprehension skills in preschoolers with typical development (TD) and pupils with DLD. Methods & Procedures: Participants were 99 five‐year‐old pupils, with and without DLD, divided into four groups: two control groups (TD‐C = 25; DLD‐C = 25) and two experimental groups (TD‐T = 24; DLD‐T = 25), from schools on the Spanish island of Tenerife. The study used, as pre‐ and post‐measures, the receptive language subtests of the CELF‐4‐Spanish: Concepts and Following Directions, Word Classes—Receptive and Sentence Structure, as well as two tasks assessing comprehension of paragraphs and narratives. Due to the strong link between oral comprehension skills and executive functions, working memory and semantic fluency are included in this research. The Backward Digit Span subtest of the Wechsler Intelligence Scale for Children (WISC‐IV) and Semantic Fluency subtest of the Controlled Oral Word Association Test (COWAT) were used to assess working memory and semantic fluency, respectively. The intervention programme followed a multitiered system of support (MTSS) model, with 95 sessions lasting 60 min each delivered jointly by teachers and speech and language therapists, and focused on lexical–semantic, morphological, syntactic and narrative skills; inferences; verbal working memory; and semantic fluency. Outcomes & Results: The results showed, as expected, that pupils diagnosed with DLD initially performed worse on oral language comprehension and executive functions than pupils with TD. Further, the DLD‐T and TD‐T groups showed greater gains following the programme, especially in word classes—receptive, sentence structure, verbal working memory and semantic fluency. Finally, a significant positive correlation was found between the gains obtained by the participants in verbal working memory and semantic fluency, with the gains obtained in the three CELF‐4‐Spanish subtests. Conclusions & Implications: An intervention programme applied at an early age fosters oral language comprehension skills and executive functions in pupils with DLD and TD. The intervention organized at different levels of support, following an MTSS model, showed clear progress of the DLD and TD groups in oral language comprehension and executive functions. What this paper adds: Pupils with DLD present deficits in linguistic comprehension and executive functions. There are many intervention programs focused on improving language production skills. It is also necessary to consider the skills underlying language problems in pupils with DLD. Oral language, inference, working memory and semantic fluency activities improve comprehension. A collaborative and inclusive intervention of teachers and speech language therapists. Psycholinguistic and neuropsychological skills training should become part of the academic curriculum as early as preschool age. What is already known on the subject: Pupils with DLD show problems related to both comprehension and production language. However, there is a clear predominance of programs just aimed at improving aspects related to language production. Clinical implications of this study: An intervention program applied at an early age fosters oral language comprehension skills and executive function in pupils with DLD. The intervention organized at different levels of support, following an adaptation of the Response Tier Intervention models, showed clear progress of the DLD in comprehension oral language and executive functions. [ABSTRACT FROM AUTHOR]

Aim: To report on the epidemiology of the brain white matter disorders of children identified via a national prospective study.Method: Since 1997 a study of UK children with progressive intellectual and neurological deterioration (PIND) has used the British Paediatric Surveillance Unit system to identify children with progressive neurodegenerative disease. This paper reports on children in the study with brain white matter disorders.Results: Between May 1997 and November 2014 the PIND study identified 349 children with diagnosed leukodystrophies, giving an estimated UK lifetime risk of 31/million live births. There were 18 specific diseases in the group and relatively large numbers of affected children came from consanguineous Pakistani families. In addition there were 454 children with genetic leukoencephalopathies - in this group there were 38 diseases. 5.8% of children with scan evidence of brain white matter disorders did not receive a specific diagnosis.Interpretation: These unique prospectively-obtained national data avoid the selection bias inherent in reports from single centres. White matter disorders of the central nervous system comprise more than half of UK paediatric neurodegenerative diseases meeting the PIND criteria. This paper reports the lifetime risk/million live births for the commonest leukodystrophies, providing a basis for comparison with future studies. [ABSTRACT FROM AUTHOR]

Infants develop skills through a coupling between their sensory and motor systems. Newborn infants must interpret sensory information and use it to modify movements and organize the postural control system based on the task demands. This paper starts with a brief review of evidence on the use of sensory information in the first months of life, and describes the importance of movement variability and postural control in infancy. This introduction is followed by a review of the evidence for the interactions between the sensory, motor, and postural control systems in typically development infants. The paper highlights the ability of young infants to use sensory information to modify motor behaviors and learn from their experiences. Last, the paper highlights evidence of atypical use of sensory, motor, and postural control in the first months of life in infants who were born preterm, with neonatal brain injury or later diagnosed with cerebral palsy (CP). [ABSTRACT FROM AUTHOR]

Obtaining assent from potential research participants is an important component of research for reasons related to ethics compliance, self-determination, and choice. However, unique issues arise when working with populations who cannot assent through traditional means, such as individuals with Autism Spectrum Disorder (ASD) and related developmental disabilities (DD). The purpose of this paper is to review and discuss assent practices within behavior-analytic research to identify strategies that can be used to obtain assent from potential participants with ASD and DDs. We began with a descriptive literature review of behavior-analytic articles that included the term "assent" to identify what practices behavior analysts have used to obtain assent from participants. In short, very few articles that clearly addressed assent procedures were identified. Thus, we propose a model for gaining assent when working with individuals with ASD and DDs. [ABSTRACT FROM AUTHOR]

People with intellectual and developmental disability (IDD) are a vulnerable population in all aspects of access and participation, abuse and neglect, and being subject to the use of restrictive practices. Accordingly, they are a group whose human rights can be impacted where equal access to supports, services, and accessible information is compromised. The current COVID‐19 pandemic is a global humanitarian emergency that has had a devastating impact across the world, for all people. Growing concern has been raised about the impact of the COVID‐19 virus on the health of people with disabilities and there has been subsequent development of strategies and protocols to promote equal access to information, health supports, and services. People with IDD have high levels of underlying comorbidity that increases their risk of contracting COVID‐19 and measures to protect them from infection are critically important. However, those measures may trigger behaviors of concern and increase the risk of being subjected to restrictive practices. While some attention has been paid to the health impacts of COVID‐19 on people with disabilities, there has been less paid to the impact on the human rights of people with IDD who present with behaviors of concern. The aim of this paper is to provide a hypothetical exploration of the impacts of pandemic prevention measures on people with IDD and behaviors of concern in the context of the Convention on the Rights of Persons with Disabilities (CRPD). In the absence of available guidance for working with people with IDD with behaviors of concern during COVID‐19, we suggest behavior support response plans that aim to ensure that people with IDD with behaviors of concern are supported properly in a time of significant disruption for them, thereby safeguarding their human rights. [ABSTRACT FROM AUTHOR]