Abstract
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Background
Allocation of resources for services and supports for children with neurodevelopmental disorders/disabilities (NDD/D) is often based on the presence of specific health conditions. This study investigated the relative roles of a child’s diagnosed health condition and neurodevelopmental and related functional characteristics in explaining child and family health and well-being.
Data and Methods
The data on children with NDD/D (ages 5 to 14; weighted n = 120,700) are from the 2006 Participation and Activity Limitation Survey (PALS), a population-based Canadian survey of parents of children with functional limitations/disabilities. Direct and indirect effects of child diagnosis status—autism spectrum disorder (ASD)/not ASD—and functional characteristics (particularly, ASD-related impairments in speech, cognition, and emotion and behaviour) on child participation and family health and well-being were investigated in a series of structural equation models, while controlling for covariates.
Results
All models adequately fitted the data. Child ASD diagnosis was significantly associated with child participation and family health and well-being. When ASD-related child functional characteristics were added to the model, all direct effects from child diagnosis on child and family outcomes disappeared; the effect of child diagnosis on child and family outcomes was fully mediated via ASD-related child functional characteristics.
Interpretation
Children’s neurodevelopmental functional characteristics are integral to understanding the child and family health-related impact of neurodevelopmental disorders such as ASD. These findings have implications for the relative weighting given to functional versus diagnosis-specific factors in considering needs for services and supports.
Keywords
Child development disorders, child health services, disabled children, family health, functional characteristics, health services needs and demand, resource allocation
Findings
Children with neurodevelopmental disorders/disabilities (NDD/D) or “neurodisability” are the largest identifiable subpopulation of children with disabilities and account for 7% to 14 % of all children in developed countries. NDD/D comprise an array of conditions characterized by impairment in posture-mobility, cognitive-adaptive functioning, communication, relating socially, and regulating emotions and behaviour; biological or physical markers of a specific medical condition may or may not be present. Diagnoses under NDD/D include autism spectrum disorders (ASD), intellectual or learning disabilities, attention-deficit/hyperactivity disorder (ADHD), cerebral palsy, and Down and fetal alcohol syndromes. [Full Text]
Authors
Anton Miller (amiller@cw.bc.ca), Jane Shen and Louise C. Mâsse are with the University of British Columbia.
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What is already known on this subject?
- Policies regulating access to services and supports for persons with disabilities are often based on diagnosis categories.
- Pediatric studies tend to focus on the impact of particular conditions, such as autism spectrum disorder (ASD).
- Expert opinion and a growing body of research attest to the importance of individual functional characteristics in understanding the impact of a disabling condition on a person’s life, and thus, on the need for services and supports.
- Few studies have compared the roles of a given diagnosis versus functional characteristics in child and family outcomes.
What does this study add?
- The functional characteristics of children with ASD or other neurodevelopmental disabilities are more informative in understanding a number of child and family outcomes, than is their being diagnosed with ASD.
- Child functional characteristics were found to mediate relationships between diagnosis and outcomes.
- The results suggest a need to emphasize functional characteristics over diagnosis categories in disability-related health and social policy.
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