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“We Are Doing the Best We Can” - Service Provider and Government Stakeholder Perspectives on Autism Spectrum Disorder Services in the Western Cape Province of South Africa
Meeting the educational needs of school aged children with autism spectrum disorder (ASD) is a major challenge in South Africa. In the Western Cape Province, for example, the rate of referrals to educational services significantly outweighs capacity in the system. An analysis of the Western Cape Education Department database performed by us in 2016 found 940 children with ASD in the system, and 744 children waiting for school placement. Alarmingly, numbers on the waiting list showed an increase of 276% over a five-year period. Existing services and structures are therefore under increasing pressure and scrutiny to identify solutions.
Objectives:
The objective of the study was to examine multi-stakeholder perspectives of the challenges and proposed solutions to meet the educational needs of children with ASD and their families. Here we focused on the perspectives of clinical service providers and government stakeholders.
Methods:
Semi-structured interviews were conducted with eight ASD service providers and six stakeholders from the Western Cape Departments of Education, Health and Social Development. Thematic analysis was used to identify emerging themes and related categories from each stakeholder group, before identifying critical domains of synergy and contestation in the two groups.
Results:
Service providers shared information about service related challenges in meeting the needs of individuals with ASD across the spectrum and across the lifespan. The theme ‘We are failing the child’ described how decisions made were reactive rather than proactive, and not always in the best interest of the child with ASD and their families. The theme ‘Everyone is working in silos’ captured the frustrations of providers about perceived poor collaboration between government departments.
Government stakeholders from different departments displayed varying degrees of knowledge and accountability for the ASD situation in the province with some departments assuming more responsibility than others as demonstrated in the theme ‘They are all not on the same page’. In the absence of an integrated national or provincial strategy for ASD, some departments described the approach to service delivery as ‘Putting out little fires everywhere’. Government stakeholders concurred that collaboration was a problem and that all government departments should be working together to find solutions.
Two integrated, overarching themes emerged from both constituencies. ‘Autism is an expensive diagnosis’ highlighted stakeholder perspectives that autism services demanded very significant physical and human resources. ‘We are doing the best we can’ described how, despite having an overburdened system and over-stretched resources both stakeholder groups felt that the Western Cape Province was doing better than other provinces in the country in terms of ASD services by having a consolidated database, outreach teams and establishing new ASD units at some special schools.
Conclusions:
The study highlighted various challenges in meeting the educational needs of children with ASD in South Africa. Few, if any, tangible solutions were proposed by stakeholders. Findings suggest the urgent need for a multi-stakeholder process, crucially including the voices of families who live with ASD, to generate comprehensive, evidence-based, sustainable and scaleable policies and practices to meet the educational needs of all children with ASD.