Rethinking diagnosis-based service models for childhood neurodevelopmental disabilities in Canada: a question of equity.

Neurodevelopmental disability in children covers a vast array of congenital and acquired long-term conditions associated with brain or neuromuscular impairments that impact function. While some presentations of neurodevelopmental disability align with diagnostic labels, many do not, leaving children whose conditions don't fit neatly under diagnostic labels struggling to access services or families and professionals feeling pressured to assign a diagnostic label in order to access services. In this paper, we (1) discuss the evidence showing that there is often a mismatch between a child's neurodevelopmental diagnosis, or lack of diagnosis, and function, (2) comment on the inequities exacerbated by diagnosis-based approaches for services, and (3) highlight the potential benefits of using a function and participation-based approach for providing services to children with neurodevelopmental disabilities. We close with three calls to action for function and participation-based approaches that could better support equitable services for children with neurodevelopmental disabilities.

Developmental profiles of children at risk for autism spectrum disorder at school entry.

Functional abilities in children with autism spectrum disorder (ASD) are highly heterogenous, and impairments can overlap with non-ASD neurodevelopmental disorders. We compared the profiles of children assessed for ASD with and without an ASD diagnosis using a retrospective cohort study of 101,739 children born in British Columbia (2000-2008). The children were grouped into the following five comparison groups: (1) ASD- (n = 1131), (2) ASD+ (n = 1583), (3) Ministry of Education designated ASD+ (n = 654), (4) special need other than ASD (n = 11,663), and (5) typically developing (n = 86,708). Five developmental domains were assessed using the Early Development Instrument. ANCOVA was used to control for covariates, Tukey's HSD test for multiple comparisons, and Cohen's d for effect size. The ASD- group had slightly higher scores than the ASD+ group with small to medium effect sizes in all domains (d = 0.20-0.48). The ASD- group had slightly higher scores than the Ministry of Education ASD+ group in only three domains with small effect sizes (d = 0.21-0.25). The ASD- group had lower scores in all domains compared to the typically developing group with large effect sizes in all domains (d = 1.12-1.77). The ASD- group received less education funding at school entry than both ASD+ groups. Overall, only small to medium differences in development were detected between the ASD- and ASD+ groups. While these children differ diagnostically, they share similar functional profiles and have substantially more difficulties than typically developing children. Therefore, differences in levels of support at school entry raise critical questions of equity. LAY SUMMARY: Comparison of children in British Columbia who have been referred for an autism assessment, with or without a diagnosis, shows similarities in their functional and developmental profiles in kindergarten. Furthermore, both groups of children have more difficulties than typically developing children. However, children who have been referred for assessment without an autism diagnosis receive less financial support at school entry, raising important questions on equity.

Understanding the Influence of Community-Level Determinants on Children's Social and Emotional Well-Being: A Systems Science and Participatory Approach.

Healthy social and emotional development and longer-term outcomes for children are shaped by factors across the multiple levels (micro, meso, exo, macro) of a child's environment. By employing a novel systems science and participatory approach, we were able to co-produce a series of causal loop diagrams that detail the complex relationships between variables operating at the community or neighborhood environment level (e.g., features of the built environment such as: housing type, access, availability, and location; parks and greenspace, facilities such as community services, and other service infrastructure such as transit), and highlight the individual and collective impacts these relationships can have on the subsystem surrounding a child's social and emotional well-being. Our approach provides a unique lens of knowledge through which communities can identify key leverage points for action and (re)design of community spaces, practices, and policy.

Communication with face masks during the COVID-19 pandemic for adults with hearing loss.

Face masks have become common protective measures in community and workplace environments to help reduce the spread of severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) infection. Face masks can make it difficult to hear and understand speech, particularly for people with hearing loss. An aim of our cross-sectional survey was to investigate the extent that face masks as a health and safety protective measure against SARS-CoV-2 have affected understanding speech in the day-to-day lives of adults with deafness or hearing loss, and identify possible strategies to improve communication accessibility. We analyzed closed- and open-ended survey responses of 656 adults who self-identified as D/deaf or hard of hearing. Over 80% of respondents reported difficulty with understanding others who wore face masks. The proportion of those experiencing difficulty increased with increasing hearing loss severity. Recommended practical supports to facilitate communication and social interaction included more widespread use of clear face masks to aid lip-reading; improved clarity in policy guidance on face masks; and greater public awareness and understanding about ways to more clearly communicate with adults with hearing loss while wearing face masks.

A community-based systems dynamics approach for understanding determinants of children's social and emotional well-being.

We report on our application of a community-based systems dynamics modelling approach to identify key factors affecting children's social and emotional well-being (SEW). Using a group model building process with 31 stakeholders in 2 communities in British Columbia, Canada, we constructed two causal loop diagrams composed of 250 variables, 534 connections and 63 feedback loops. Feedback loops, systems complexity, and prominent systems level variables illustrate the interconnectedness of multilevel determinants influencing children's SEW. The community-based models highlighted areas for place-based intervention planning that require collective community action and intersectoral commitment toward common objectives for practice and policy on SEW.

The Transition to School Among Deaf/Hard-of-Hearing Children: Teacher and Parent Perspectives.

Although entry into the school system is a major milestone in the lives of young d/Deaf or hard-of-hearing (DHH) children and their families, relatively little is known about parents' and teachers' experiences and perspectives of this important transition. The aims of this study were to describe parents' concerns during their children's transition from early intervention to school, to describe practices available for families of DHH children, and to explore parents' and teachers' perspectives regarding practices that support a smooth transition to school. Parents (N = 40) and teachers (N = 37) of the deaf and hard of hearing completed surveys examining their experiences and perspectives on DHH children's transition to school. Among concerns expressed among parents was their child's ability to participate successfully in an inclusive school setting, as well as the level of supports their child would receive. Teachers reported numerous policies and practices that supported the transition to school, emphasizing high-intensity practices often used to gather information about the child and set accommodations in place. Parent and teacher reports on facilitators for the transition are compared and contrasted. Recommendations for research and practice are provided.

The Transition From Early Intervention to School for Children Who Are Deaf or Hard of Hearing: Administrator Perspectives.

Although the transition from early intervention (EI) to school is a significant milestone in the lives of young children, little research to date has investigated this transition among children who are deaf or hard of hearing (D/HH). The aims of this study were to investigate the organizational policies, procedures, and guidelines that facilitate or hinder the transition from the EI system to the school system for children who are D/HH from the perspective of program administrators. Using the Enhanced Critical Incident Technique methodology, 146 incidents were extracted from 10 interviews and sorted into 10 helping, 9 hindering, and 5 wish list categories. Findings are consistent with the Ecological and Dynamic Model of Transition (Rimm-Kaufman & Pianta, 2000), which conceptualizes the transition to school as being influenced by the pattern of interactions between the individuals, groups, and institutions connected to the child.

Dental caries disparities in early childhood: A study of kindergarten children in British Columbia.

OBJECTIVE: The objective of this paper was to describe results of a public health-administered, provincial dental survey of children aged 4-6 years old in British Columbia, and assess the changes in rates of dental caries geographically and by neighbourhood socio-economic status between baseline (2006/07) and follow-up data collection (2009/10). METHOD: The study design involved two retrospective cohorts of kindergarten children who received a public health-administered dental assessment in the years 2006/07 and 2009/10. Neighbourhood socio-economic status was measured by an index created from Canadian Census and Tax Filer data sets. The dental outcomes included previous decay experience, untreated visible decay, and urgent treatment needs. RESULTS: The analysis comprised dental outcomes for 35,602 kindergarten children in 2006/07 and 35,215 children in 2009/10. There was a modest decrease in dental decay rates between surveys, with rates of decay experience - previous and untreated - of 38.9% and 36.7% respectively. However, there were disparities, with almost 50% of children with dental decay in the most socio-economically disadvantaged neighbourhoods, and approximately 30% with dental decay in the least disadvantaged areas. CONCLUSION: The kindergarten dental survey had extensive coverage, was at the population level, and enabled analysis of change in early childhood dental decay rates over time and by geography. Although overall rates improved, dental health inequalities persisted in both survey years at both regional and neighbourhood levels.

Social support for parents of deaf children: moving toward contextualized understanding.

In light of claims that social support needs to be defined within specific context, we conducted a metasynthesis to identify ways that social support has been studied and contextualized in research focused on hearing parents of children with hearing loss. A literature search of published articles was conducted to identify research studies related to support and hearing parents of children with hearing loss. Our search yielded 108 items from Psycinfo and 154 items from Web of Science; 26 studies met our inclusion criteria. Our analyses involved summary and integration of information regarding research methods, guiding theoretical frameworks, and findings in relation to diverse support contexts. We found that it is the multidimensionality of social support and its specific functions, individually and in combination, that are particularly relevant in informing family-centered service provision. Further understanding of the multidimensional and dynamic nature of support could occur through investigation of diverse functions of support within and across ecological contexts. Findings from this study contributed to a descriptive framework that can be used to explore the multidimensionality of support; facilitate use of methods that assess specific support functions; and also inform the development of interventions that are responsive and match the needs of parents.

Development of an integrated child health information system for children who are deaf or hard of hearing.

Young children who are deaf or hard of hearing typically participate in health and early intervention service structures involving multiple agencies and service providers, all of whom may be responsive to a child's and family's needs, but remain mutually distinct with minimal interdependence. Lack of coordination may result in fragmented service delivery and may be counterproductive to the provision of family centred services. Increasingly, advancements in technology, such as the development of integrated child health information systems, have facilitated greater coordination and integration of service delivery in multidisciplinary and multisite program contexts. In the present article, the process of developing an integrated child health information system for a new provincial early hearing detection and intervention program in British Columbia is described. Key considerations for system development included the following: the nature of the preprogram structure for information management and sharing; the need for modifications of the structure; and ways that the structure could be improved.