The association between home learning during COVID-19 lockdowns and subsequent school attendance among children with neurodevelopmental conditions.

BACKGROUND: Children with neurodevelopmental conditions have high levels of school absence. During the COVID-19 pandemic, schools closed for many students. The relationship between home learning during school closures and subsequent school attendance requires attention to better understand the impact of pandemic education policy decisions on this population. This study aims to investigate the association between home learning, hybrid learning and school learning during school closures (in January-March 2021) with subsequent school attendance (in May 2021) in children with neurodevelopmental conditions. METHODS: An online survey was completed by 809 parents/carers of 5- to 15-year-old autistic children and/or children with intellectual disability. Regression models examined the association of learning location during school closures with subsequent school absence (i.e., total days missed, persistent absence and school refusal). RESULTS: Children who were learning from home during school closures later missed 4.6 days of a possible 19. Children in hybrid and school learning missed 2.4 and 1.6 school days, respectively. The rates of school absence and persistent absence were significantly higher in the home learning group even after adjusting for confounders. Learning location was not associated with subsequent school refusal. CONCLUSIONS: Policies for school closures and learning from home during public health emergencies may exacerbate school attendance problems in this group of vulnerable children.

Clinical utility of the parent-reported Strengths and Difficulties Questionnaire as a screen for emotional and behavioural difficulties in children and adolescents with intellectual disability.

We assessed the clinical utility of the parent-reported Strengths and Difficulties Questionnaire (SDQ) as a screen for emotional and behavioural difficulties in 626 children and young people with intellectual disability. Using the Developmental Behavior Checklist (DBC2-P) to determine clinical caseness, the area under the curve for the SDQ total difficulties score was 0.876 (95% CI 0.841-0.911), indicating that it is a good measure for identifying significant emotional and behavioural difficulties requiring further investigation. Analyses supported the use of the same SDQ cut-off for those with and without intellectual disability, which may assist with consistent and comparable assessment in clinical practice.

Factors influencing access to early intervention for families of children with developmental disabilities: A narrative review.

BACKGROUND: Early intervention (EI) can improve a range of outcomes for families of children with developmental disabilities. However, research indicates the level of access does not always match the level of need. To address disparities, it is essential to identify factors influencing access. METHOD: We propose a framework where access to EI is conceptualised as a process that includes three main phases. A narrative review examined potential barriers, facilitators and modifiers of access for each phase. RESULTS: The process of access to EI includes the following: 1) recognition of need, 2) identification or diagnosis and 3) EI provision or receipt. Several factors affecting access to EI for each phase were identified, related to the family, services, the intersection between family and services, and the context. CONCLUSION: A broad range of factors appear to influence the process of access to EI for this population. Our framework can be used in future research investigating access. Broad implications for policy, practice and future research to improve access to EI are discussed.

Early Years Parenting Mediates Early Adversity Effects on Problem Behaviors in Intellectual Disability.

A family developmental framework was applied to data from families of children with intellectual disabilities to understand the role of parenting in the path from early adversity to problem behaviors in mid-childhood. Data from 9 months to 11 years tested the Family Stress Model in families of 555 children. Adversarial parenting between 3 and 5 years mediated the path from early adversity (family poverty and maternal psychological distress at nine months) to problem behaviors at 7 and 11 years. Positive parent-child relationship only mediated the path to conduct problems. Multiple mediation was not present. Early adversity impacts both positive parent-child relationship and adversarial parenting between three and five, but the latter is crucial for problem behaviors in mid-childhood.

Outcomes from a community-based Positive Behavioural Support team for children and adults with developmental disabilities.

BACKGROUND: Previous evaluations of community PBS teams have not investigated whether behaviour change is both statistically reliable and clinically significant. Few previous studies have reported quality of life (QoL) and social validity outcomes. METHOD: The present authors collected data on 85 people referred to a specialist PBS team. The present authors used a unique set of multiple measures and statistical change metrics to evaluate outcome. RESULTS: Statistically significant improvements in QoL and health-related QoL (HRQoL), with medium to large effect sizes, were demonstrated following PBS input. Mean Behaviour Problems Inventory-Short Form scores reduced from 37.74 (SD = 30.54) at baseline to 12.12 (SD = 12.24) at follow-up, with a large effect size (d = 0.84). Stakeholders reported valuing the process and outcomes of PBS, findings which support the social validity of PBS for people with developmental disabilities. CONCLUSION: This study demonstrates successful PBS outcomes in QoL, HRQoL, challenging behaviour and social validity in a community setting.

Predicting aggression in adults with intellectual disability: A pilot study of the predictive efficacy of the Current Risk of Violence and the Short Dynamic Risk Scale.

BACKGROUND: Structured assessments have been shown to assist professionals to evaluate the risk of aggression in secure services for general offender populations and more recently among adults with intellectual disabilities. There is a need to develop intellectual disability sensitive measures for predicting risk of aggression in community samples, especially tools with a focus on dynamic variables. METHODS: The study prospectively followed 28 participants for up to 2 months to test whether the Current Risk of Violence (CuRV) and Short Dynamic Risk Scale (SDRS) were able to predict verbal and physical aggression in a community sample of adults with intellectual disability. RESULTS: CuRV and SDRS ratings significantly predicted verbal and physical aggression over a 2-month period. CONCLUSIONS: The current study supports the use of the CuRV with adults with intellectual disability living in community settings. The CuRV and SDRS are worthy of future development and evaluation in independent investigations.

Developmental trajectories of behaviour problems and prosocial behaviours of children with intellectual disabilities in a population-based cohort.

BACKGROUND: The study examined developmental trajectories of prosocial behaviours, internalising and externalising behaviour problems in children with intellectual disabilities (ID) between pre-school and middle childhood. METHOD: Growth models examined the best-fitting trajectories for internalising and externalising behaviour problems, as well as prosocial behaviours, in 555 children with ID between the ages of three and 11 years from the UK Millennium Cohort Study. Models were also fitted to examine the association of child outcomes with time-varying maternal psychological distress and life satisfaction. Finally, models were extended to compare trajectories with typically developing children. RESULTS: Externalising behaviour problems and prosocial behaviours generally improved, whereas internalising problems did not change systematically over time. A cubic trend indicated a slowing down of improvement between ages 5 and 7 for prosocial behaviours and externalising problems. Maternal psychological distress positively co-varied with internalising and externalising behaviour problems over time. Life satisfaction was not related to changes in child behaviours over time. Compared to behavioural trajectories in typical development, intercepts were worse and trajectories also differed in the ID group. CONCLUSIONS: Over an 8-year period, externalising behaviour problems and prosocial behaviours of children with ID tended to improve. These behavioural improvements slowed between five and seven years, possibly coinciding with school-related environmental changes. Children with ID significantly differ from children with typical development in both the initial level of difficulties (exhibiting higher externalising and internalising behaviours, and lower prosocial behaviours) and subsequent development as they age, showing comparatively lower decreases in both externalising and internalising behaviours, and lower increases in prosocial behaviours. Findings also highlight the significant role of maternal mental health problems in the trajectory of child behaviour problems.

Validating GO4KIDDS as a brief measure of adaptive skills in special education settings for children with severe intellectual disability.

BACKGROUND: Adaptive skills measures tend to be lengthy. The GO4KIDDS (Great Outcomes for Kids Impacted by Severe Developmental Disabilities; (Journal of Applied Research in Intellectual Disabilities, 58, 2015 and 594)) Brief Adaptive Behaviour Scale was developed to provide a brief assessment of adaptive skills. Our study aimed to examine the psychometric properties of G04KIDDS Brief Adaptive Scale in a large sample of children in special education. METHODS: Teachers reported on 361 students with severe to profound intellectual disability. The scale's factor structure was examined through principal components analysis (PCA), while its convergent validity was examined in relation to the Vineland (VABS-II; Vineland-II adaptive behavior scales, Circle Pines, MN, AGS and 2005). RESULTS: The PCA indicated a single component measuring overall adaptive skills, which had excellent internal consistency (alpha = 0.93), and convergent validity (Pearson's r = 0.81). CONCLUSIONS: Teacher-reported scores on GO4KIDDS Brief Behaviour Scale can provide a reliable and valid composite of adaptive skills in children with severe to profound intellectual disability. The scale will be useful to researchers and teachers who need a brief descriptive assessment of adaptive functioning.

Physical and psychological health of family carers co-residing with an adult relative with an intellectual disability.

BACKGROUND: Providing long-term care to an adult relative with intellectual disability can impact negatively on caregivers' health and well-being. METHODS: Data were collected via online and postal questionnaires on 110 family carers' physical and psychological health, family stress and perceived positive gains from caring. Psychological adaptation and carers' satisfaction with available support were also examined. RESULTS: Study participants reported more health problems than general populations. Higher support needs of care recipients were associated with increased family stress. Carers being female were associated with lower family stress. Older age and better socio-economic position were associated with better psychological outcomes. Other associations were consistent with psychological adaption and perceived helpfulness of support buffering negative outcomes and facilitating positive gains from caring. CONCLUSIONS: Family carers of adults with intellectual disability appear to experience poorer health outcome than population norms. Adaption to the caregiving role may buffer negative outcomes. Further large scale, population-based, longitudinal research is needed.

Effectiveness of Active Support for adults with intellectual disability in residential settings: Systematic review and meta-analysis.

BACKGROUND: The review examined the effectiveness of Active Support (RQ1) and stakeholders' experiences of the model (RQ2). METHOD: Data were meta-analysed (RQ1; studies = 14) and synthesized narratively (RQ2; studies = 10). RESULTS: By follow-up (6 months post-training), effect sizes (RQ1) for resident total activity engagement were significant and ranged from small (d = 0.33, 95% CIs: 0.10-0.50) to large (Tau-U = 0.95, 95% CIs: 0.64-1.25) depending on study design. Follow-up changes in staff assistance were moderate (d = 0.56, 95% CIs: 0.23-0.89; Tau-U 0.63, 95% CIs: 0.32-0.93) and large for quality of support (d = 1.03, 95% CIs: 0.61-1.44). Other outcomes did not change. CONCLUSIONS: Active Support was more effective following complete staff training, in larger settings, at lower staff-to-resident ratios and with less experienced staff. Active Support training and outcomes were valued by staff and residents (RQ2), and staff experienced increased job satisfaction. Lower staff turnover and organizational readiness appear crucial for maintaining implementation.

Challenging behaviours in adults with an intellectual disability: A total population study and exploration of risk indices.

OBJECTIVES: Considerable variation has been reported in the prevalence and correlates of challenging behaviour (CB) in adults with intellectual disabilities (ID). To provide a robust estimate of prevalence, we identified the entire administrative population of adults with ID in a defined geographical area and used a behaviour assessment tool with good psychometric properties. METHODS: Data from 265 adults who were known to services were collected using a demographic survey tool and the Behavior Problems Inventory - Short Form. The prevalence of self-injurious, aggressive/destructive, stereotyped, and overall CB was evaluated. We explored the potential of developing cumulative risk indices (CRI) to inform longitudinal research and clinical practice. RESULTS: The prevalence of overall CB was 18.1% (95% CI: 13.94-23.19%). The prevalence of self-injurious behaviour was 7.5% (95% CI: 4.94-11.37%), aggressive-destructive behaviour 8.3% (95% CI: 5.54-12.25%), and stereotyped behaviour 10.9% (95% CI: 7.73-15.27%). Communication problems and severity of ID were consistently associated with higher risk of CBs. CRIs were significantly associated with CBs, and the five methods of CRI development produced similar results. CONCLUSIONS: Findings suggest a multi-element response to CB is likely to be required that includes interventions for communication and daytime activity. Exploratory analyses of CRIs suggested these show promise as simple ways to capture cumulative risk in this population. Subject to longitudinal replication, such a tool may be especially useful in clinical practice to identify adults who are priority for interventions and predict future demand on services. PRACTITIONER POINTS: The prevalence of challenging behaviour (CB) was 18.1% in this total population study. Stereotypy was the most frequent type of CB. Communication difficulties and severe-profound intellectual disabilities were most systematically related to the presence of CB. Establishing the effect of multiple risk factors is likely to identify people who are priority for interventions. Addressing multiple, rather than singular risks, is likely to be more efficacious. We tested five different methods of putting together a multiple risk index. All methods provided a reasonable association with CB. The most user-friendly method was the additive cumulative risk index (CRI). Limitations This is a cross-sectional design which enabled factors currently associated with CB to be identified for the whole cohort, but these variables may not be those conferring risk for the development or maintenance of CB over time. Future longitudinal research is required to replicate these CRI analyses before concluding about the CRI method with the highest predictive validity.

Predictors of Access to Early Support in Families of Children with Suspected or Diagnosed Developmental Disabilities in the United Kingdom.

This study examined predictors of access to early support amongst families of 0-6-year-old children with suspected or diagnosed developmental disabilities in the United Kingdom. Using survey data from 673 families, multiple regression models were fitted for three outcomes: intervention access, access to early support sources, and unmet need for early support sources. Developmental disability diagnosis and caregiver educational level were associated with intervention access and early support access. Early support access was also associated with child physical health, adaptive skills, caregiver ethnicity, informal support, and statutory statement of special educational needs. Unmet need for early support was associated with economic deprivation, the number of household caregivers, and informal support. Multiple factors influence access to early support. Key implications include enhancing processes for formal identification of need, addressing socioeconomic disparities (e.g., reducing inequalities, increasing funding for services), and providing more accessible services (e.g., coordinating support across services, flexible service provision).

Association of cognitive and adaptive skills with internalizing and externalizing problems in autistic children and adolescents.

The presence of an intellectual disability (ID) alongside autism is considered to increase the risk for mental health and behavior problems in children and adolescents. Existing evidence is restricted by looking at ID as a categorical classification. The study aimed to examine the association of cognitive and adaptive behavior skills with internalizing and externalizing problems in a large sample of autistic children and adolescents, across a wide range of cognitive skills. Participants were 2759 children and adolescents aged between 4 and 18 years recruited as part of the Simons Simplex Collection (SSC), of whom 709 (approximately 25%) had ID. Multiple regression models examined associations of internalizing and externalizing problems with cognitive and adaptive skills (communication, daily living, and socialization skills). Cognitive skills were not associated with externalizing problems but were associated with more internalizing problems in autistic children without ID (Cog ß: 0.126). All adaptive skill domains were inversely associated with externalizing (Communication ß: -0.145; Daily-Living ß: -0.132; Socialization ß: -0.289) and internalizing problems (Communication ß: -0.074; Daily-Living ß: -0.064; Socialization ß: -0.213) in those without ID. Daily living (ß: -0.158) and socialization skills (ß: -0.104) were inversely correlated with externalizing problems in autistic children with ID, while only socialization problems (ß: -0.099) were associated with internalizing problems in this group. Socialization skills were systematically associated with internalizing and externalizing problems across all levels of cognitive functioning. Supporting social skills development may benefit all aspects of child mental health, while recognizing that children with higher cognitive skills are more vulnerable to internalizing problems might assist with earlier identification of these problems.

Evidence-based planning and costing palliative care services for children: novel multi-method epidemiological and economic exemplar.

BACKGROUND: Children's palliative care is a relatively new clinical specialty. Its nature is multi-dimensional and its delivery necessarily multi-professional. Numerous diverse public and not-for-profit organisations typically provide services and support. Because services are not centrally coordinated, they are provided in a manner that is inconsistent and incoherent. Since the first children's hospice opened in 1982, the epidemiology of life-limiting conditions has changed with more children living longer, and many requiring transfer to adult services. Very little is known about the number of children living within any given geographical locality, costs of care, or experiences of children with ongoing palliative care needs and their families. We integrated evidence, and undertook and used novel methodological epidemiological work to develop the first evidence-based and costed commissioning exemplar. METHODS: Multi-method epidemiological and economic exemplar from a health and not-for-profit organisation perspective, to estimate numbers of children under 19 years with life-limiting conditions, cost current services, determine child/parent care preferences, and cost choice of end-of-life care at home. RESULTS: The exemplar locality (North Wales) had important gaps in service provision and the clinical network. The estimated annual total cost of current children's palliative care was about £5.5 million; average annual care cost per child was £22,771 using 2007 prevalence estimates and £2,437- £11,045 using new 2012/13 population-based prevalence estimates. Using population-based prevalence, we estimate 2271 children with a life-limiting condition in the general exemplar population and around 501 children per year with ongoing palliative care needs in contact with hospital services. Around 24 children with a wide range of life-limiting conditions require end-of-life care per year. Choice of end-of-life care at home was requested, which is not currently universally available. We estimated a minimum (based on 1 week of end-of-life care) additional cost of £336,000 per year to provide end-of-life support at home. Were end-of-life care to span 4 weeks, the total annual additional costs increases to £536,500 (2010/11 prices). CONCLUSIONS: Findings make a significant contribution to population-based needs assessment and commissioning methodology in children's palliative care. Further work is needed to determine with greater precision which children in the total population require access to services and when. Half of children who died 2002-7 did not have conditions that met the globally used children's palliative care condition categories, which need revision in light of findings.

Prospective dynamic assessment of risk of sexual reoffending in individuals with an intellectual disability and a history of sexual offending behaviour.

BACKGROUND: The purpose of the present study was to add to the literature on the predictive accuracy of a dynamic intellectual disability specific risk assessment tool. METHOD: A dynamic risk assessment for sexual reoffending (ARMIDILO-S), a static risk assessment for sexual offending (STATIC-99), and a static risk assessment for violence (Violence Risk Appraisal Guide [VRAG]) were completed for a sample of 64 adult males with an intellectual disability. RESULTS: The dynamic risk assessment for sexual offenders with an intellectual disability resulted in the best prediction of sexual reoffending (ARMIDILO-S area under the curve (AUC) = 0.92) this was better than an established sexual offending static risk assessment (STATIC-99 AUC = 0.75). A static tool for violent reoffending, did not perform as well in this group (VRAG AUC = 0.58). CONCLUSIONS: Results suggest that dynamic variables are useful in predicting sexual reoffending with individuals with an intellectual disability, confirming previous findings. The ARMIDILO-S is a promising dynamic risk assessment for individuals with an intellectual disability.

School Attendance Problems Among Children with Neurodevelopmental Conditions One year Following the Start of the COVID-19 Pandemic.

PURPOSE: The present study investigated school absence among 1,076 5-15 year-old children with neurodevelopmental conditions (intellectual disability and/or autism) approximately one year following the start of COVID-19 in the UK. METHODS: Parents completed an online survey indicating whether their child was absent from school during May 2021 and the reason for each absence. Multi-variable regression models investigated child, family and school variables associated with absenteeism and types of absenteeism. Qualitative data were collected on barriers and facilitators of school attendance. RESULTS: During May 2021, 32% of children presented with persistent absence (missing ≥ 10% of school). School refusal and absence due to ill-health were the most frequent types of absence, accounting for 37% and 22% of days missed, respectively. COVID-19 related absence accounted for just 11% of days missed. Child anxiety was associated with overall absenteeism and with days missed because of school refusal. Parent pandemic anxiety and child conduct problems were not associated with school absenteeism. Hyperactivity was associated with lower levels of absenteeism and school refusal but higher levels of school exclusion. A positive parent-teacher relationship was associated with lower levels of absenteeism, school refusal and exclusion. Child unmet need in school was the most frequently reported barrier to attendance while COVID-19 was one of the least frequently reported barriers. CONCLUSION: COVID-19 had a limited impact on school attendance problems during this period. Findings highlighted the role of child mental health in different types of absence and the likely protective role of a positive parent-teacher relationship.

"We are all there silently coping." The hidden experiences of parents of adults with Asperger syndrome.

BACKGROUND: The experiences of older parents of adults with Asperger syndrome have not been explored in the research literature. METHOD: Four families who had middle-aged offspring with Asperger syndrome were interviewed (3 mothers and 1 couple), and the interviews were analysed using interpretative phenomenological analysis (IPA). RESULTS: Six themes emerged from the analysis: (a) providers of "hidden" support, (b) role of advocate, (c) social isolation, (d) intrafamilial relationships, (e) support for parents, and (f) future concerns. CONCLUSIONS: The findings of this study offer insight into the experience of parents of adult sons with Asperger syndrome. Implications for future support interventions and research are suggested.

Relationships and Sex Education Outcomes for Students With Intellectual Disability: Protocol for the Development of a Core Outcome Set.

BACKGROUND: People with intellectual disability are twice as likely to experience sexual abuse, unintended pregnancies, and sexually transmitted diseases as people in the general population. Despite this, very little is known about how to deliver relationships and sex education effectively to this vulnerable population, how to measure the impact of its delivery in schools, and what stakeholders perceive as important outcomes of this education. OBJECTIVE: To address these urgent issues, this study aims to develop a stakeholder consensus-based core outcome set of relationships and sex education for use in research and educational settings with students with intellectual disability. METHODS: The study will use a 2-stage mixed methods design. The first stage will involve a systematic review of relationships and sex education outcomes reported in the literature, followed by qualitative exploration with caregivers, teachers and school staff, policy makers, and researchers to investigate their perspectives of meaningful outcomes of this education. Students with intellectual disability will be enabled to take part to express their views on outcomes of importance to them. The second stage will use findings from stage 1 in a 2-round web-based Delphi study with caregivers, teachers and school staff, policy makers, and researchers to develop consensus on proposed outcomes for the evaluation of relationships and sex education with this population. RESULTS: As of September 2022, we have completed a systematic review and recruited 56 stakeholders (n=53, 95%, adults and n=3, 5%, students with intellectual disability) for the first stage of the study. We are still recruiting students with intellectual disability. Data analysis has not started yet. Recruitment for the second stage will commence in November 2022. We expect to complete the study by October 2023 and publish the results by the end of 2024. CONCLUSIONS: The development of a core outcome set of relationships and sex education will provide a significant first step to assist the implementation, delivery, evaluation, and sustainability of relationships and sex education for students with intellectual disability. Key audiences will be teachers, researchers, policy makers, and decision makers. TRIAL REGISTRATION: Core Outcome Measures in Effectiveness Trials 1787; https://www.comet-initiative.org/Studies/Details/1787. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): PRR1-10.2196/39921.

Mental health problems in children with intellectual disability.

Intellectual disability ranks in the top ten causes of disease burden globally and is the top cause in children younger than 5 years. 2-3% of children have an intellectual disability, and about 15% of children present with differences consistent with an intellectual disability (ie, global developmental delay and borderline intellectual functioning). In this Review, we discuss the prevalence of mental health problems, interventions to address these, and issues of access to treatment and services. Where possible, we take a global perspective, given most children with intellectual disability live in low-income and middle-income countries. Approximately 40% of children with intellectual disability present with a diagnosable mental disorder, a rate that is at least double that in children without intellectual disability. Most risk factors for poor mental health and barriers to accessing support are not unique to people with intellectual disability. With proportionate universalism as the guiding principle for reducing poor mental health at scale, we discuss four directions for addressing the mental health inequity in intellectual disability.

Elective home education of children with neurodevelopmental conditions before and after the COVID-19 pandemic started.

COVID-19 brought disruptions to children's education and mental health, and accelerated school de-registration rates. We investigated Elective Home Education (EHE) in families of children with a neurodevelopmental condition. A total of 158 parents of 5-15 year-old children with neurodevelopmental conditions (80% autistic) provided information on reasons for de-registration, their experience of EHE, and children's mental health. Few differences were found between children participating in EHE before and after the pandemic started. Low satisfaction with school for not meeting children's additional needs was the main reason for de-registering in both groups. COVID-19 had a more limited role in parents' decision to de-register. The main advantage of EHE reported in both groups was the provision of personalised education and one-to-one support. Levels of anxiety, internalising and externalising problems were similar between children participating in EHE before and after the pandemic started, and also similar between all children in EHE and school-registered children (N = 1,079).