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.

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.

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.

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).

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.

Family Relationships and Their Associations With Perceptions of Family Functioning in Mothers of Children With Intellectual Disability.

We explored whether reports of three dyadic relationships (marital/partner, parent-child, sibling) were related to perceptions of family functioning in 467 mothers of children with intellectual disability aged 4-15 years. Structural equation models were fitted to examine associations between relationship indicators and family functioning. The final structural model showed that partner relationship satisfaction, partner disagreement, child-parent conflict, and sibling relationship warmth accounted for the most variance in family functioning, with partner relationship satisfaction having the strongest positive association. Dimensions of dyadic relationships appear to be associated with broader constructs of family functioning in this sample of mothers, signifying the potential for systemic intervention.

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.

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.

Types and correlates of school non-attendance in students with autism spectrum disorders.

LAY ABSTRACT: Our study aimed to describe school non-attendance in students with autism. We conducted an online survey. Parents of 486 students (mean age: 11 years) indicated which days their child had missed school (over a period of 1 month). If the child had missed a day, the parent was asked to select a reason from a list of 15 possible reasons (this is a measure of types of school non-attendance called SNACK (School Non-Attendance ChecKlist; Heyne et al., 2019)). On average, students missed 5 days of school of a possible 23 days. Missing over 10% of school is known as persistent absence, and in our study, 43% of students experienced persistent absence. Older students, who attended mainstream schools, who did not live in a two-parent household and whose caregiver was unemployed were more likely to miss school. Looking at the reasons for absence, school refusal was the most frequent reason, accounting for 43% of absences. Nine percent of absence was due to school exclusion. Nine percent of absence was due to school withdrawal. Truancy was almost non-existent. A final reason describes non-problematic absence that is mostly due to medical appointments and illness. This type of absence accounted for 32% of absences in our study, and it was more likely in student with intellectual disability. School refusal was more likely among older students. School exclusion was more likely among students from single-parent, unemployed and well-educated households. Findings from this study help us to understand better the difficulties students with autism experience attending school.

Measurement invariance of the Positive Gains Scale in families of children with and without disabilities.

BACKGROUND: Despite the high frequency of case-control studies in the developmental disability literature, there is a paucity of research establishing the measurement equivalence of instruments used, and particularly those relating to positive perceptions and experiences in family disability research. AIMS: The present study sought to establish measurement invariance for the Positive Gains Scale (PGS) across 1219 mothers of children with developmental disabilities, 234 mothers of children with spina bifida/hydrocephalus, and 157 mothers of children without disabilities. METHODS AND PROCEDURES: A three-step test for measurement invariance across the three groups was conducted using Multigroup Confirmatory Factor Analysis. OUTCOMES AND RESULTS: Loadings between the three groups were invariant, suggesting the criteria to assume metric invariance was met. However, the assumption of scalar invariance was not met, suggesting that item intercepts differed between the three groups. CONCLUSIONS AND IMPLICATIONS: Our findings suggest that the PGS cannot be meaningfully used to compare outcomes between mothers of children with developmental disabilities and other mothers. These findings may have wider implications for research utilising well-being measures to make comparisons with carers of children with developmental disabilities.

1000 Families Study, a UK multiwave cohort investigating the well-being of families of children with intellectual disabilities: cohort profile.

PURPOSE: The 1000 Families Study is a large, UK-based, cohort of families of children with intellectual disability (ID). The main use of the cohort data will be to describe and explore correlates of the well-being of families of children with ID, including parents and siblings, using cross-sectional and (eventually) longitudinal analyses. The present cohort profile intends to describe the achieved cohort. PARTICIPANTS: Over 1000 families of UK children with ID aged between 4 and 15 years 11 months (total n=1184) have been recruited. The mean age of the cohort was 9.01 years old. The cohort includes more boys (61.8%) than girls (27.0%; missing 11.1%). Parents reported that 45.5% (n=539) of the children have autism. Most respondents were a female primary caregiver (84.9%), and 78.0% were the biological mother of the cohort child with ID. The largest ethnic group for primary caregivers was White British (78.5%), over half were married and living with their partner (53.3%) and 39.3% were educated to degree level. FINDINGS TO DATE: Data were collected on family, parental and child well-being, as well as demographic information. Wave 1 data collection took place between November 2015 and January 2017, primarily through online questionnaires. Telephone interviews were also completed by 644 primary caregivers. FUTURE PLANS: Wave 2 data collection is ongoing and the research team will continue following up these families in subsequent waves, subject to funding availability. Results will be used to inform policy and practice on family and child well-being in families of children with ID. As this cohort profile aims to describe the cohort, future publications will explore relevant research questions and report key findings related to family well-being.

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.

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.

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.

A Population-Based Study of the Behavioral and Emotional Adjustment of Older Siblings of Children with and without Intellectual Disability.

This is the first study on the behavioral and emotional adjustment of siblings of children with intellectual disabilities (ID) to use a population-based sample, from the third wave of the Millennium Cohort Study (MCS); a UK longitudinal birth cohort study. We examined differences between nearest-in-age older siblings (age 5-15) of MCS children (likely mainly with mild to moderate ID) identified with ID (n = 257 siblings) or not (n = 7246 siblings). The Strengths and Difficulties Questionnaire (SDQ) measured all children's adjustment. For SDQ total problems, 13.9% of siblings of children with ID and 8.9% of siblings of children without had elevated scores (OR 1.65; 95% CI 1.04, 2.62; p = 0.031). Similar group differences were found for SDQ peer and conduct problems. In logistic regression models, variables consistently associated with older sibling adjustment were: adjustment of the MCS cohort child, older sibling being male, family socio-economic position, primary carer psychological distress, and being from a single parent household. The ID grouping variable was no longer associated with adjustment for all SDQ domains, except siblings of children with ID were less likely to be identified as hyperactive (OR 0.30; 95% CI 0.10, 0.87; p = 0.027). Some older siblings of children with ID may be at additional risk for behavioral and emotional problems. Group differences were related mainly to social and family contextual factors. Future longitudinal research should address developmental pathways by which children with ID may affect sibling adjustment.

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.