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Exploring how the diagnostic process stratifies children with intellectual disability navigating the service system
16363University of Ottawa, Canada.
Insights
Children with intellectual disability face significant health disparities and service barriers. Diagnostic processes often exclude unique needs, leaving carers feeling dismissed and services unresolved.
Area of Science:
- Child Health
- Disability Studies
- Sociology of Health
Background:
- Children with intellectual disability (ID) exhibit higher rates of health issues like dental disease, obesity, and behavioral disorders.
- Navigational barriers in health and social services exacerbate unmet needs, leading to hospitalizations and parental stress.
Purpose of the Study:
- To investigate the understanding of intellectual disability among carers and service providers.
- To identify knowledge gaps and systemic issues within service provision for children with ID.
Main Methods:
- Utilized discourse analysis to examine perceptions of intellectual disability.
- Applied Deleuze and Guattari's theoretical concepts of rhizome and stratification.
Main Results:
- The diagnostic process stratified children into service-eligible or ineligible groups based on specific criteria.
- Carers reported that their children's unique needs were not recognized, leading to feelings of dismissal by clinicians.
Conclusions:
- Current diagnostic frameworks for intellectual disability may not adequately capture individual needs, impacting service access.
- Systemic improvements are needed to ensure inclusive and responsive care for children with intellectual disability and their families.
Abstract:
Children with intellectual disability experience a higher prevalence of dental disease, obesity, challenging behaviours, and mental health disorders compared to children without intellectual disability. Children with intellectual disability concurrently face health and social service navigational barriers that are associated with unresolved health needs and hospital admissions, and parent burnout and employment interruptions. In this study, we explored the knowledge gap of how carers and governmental agencies, providing services, understand intellectual disability using discourse analysis, and a theoretical framework applying Deleuze and Guattari's concepts of the rhizome and stratification. We found that children with intellectual disability were stratified into eligible or ineligible service recipients through the diagnostic process that prioritized specified characteristics. Carers did not perceive that their children's unique characteristics and needs were accounted for within the diagnostic process and expressed feelings of being dismissed by clinicians and providers in decision-making about priority needs and services.
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