Navigating the battleground: autism policy and human rights for children with autism spectrum disorders in Australia
Winter, Satine Hyacinth (2017) Navigating the battleground: autism policy and human rights for children with autism spectrum disorders in Australia. PhD thesis, Griffith University.
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Abstract
The purpose of this study was to explore the Helping Children With Autism (HCWA) package, which is a public website on Australian autism policy with a particular consideration of how the HCWA package positioned parents when they engaged with this federal government initiative. The study also aimed to examine how and to what extent the HCWA package aligned with international human rights standards using the Convention on the Rights of Persons with Disabilities. This study was underpinned by a theoretical framework that combined the sociology of Zygmunt Bauman and the models of disability (charity, medical, social, human rights) with human rights.
The nature and complexity of autism spectrum disorder (ASD) presents challenges to parents raising their child with ASD, which often results in uncertainty about their rights and responsibilities alongside those of the government, and State. In 2008 the Australian Government attempted to solve the policy problem of autism and implemented the HCWA package in response to parents’ pleas for help in raising their child with ASD (Palm Consulting Group, 2005, June 20). The HCWA package was the first autism specific policy in Australia and aimed to provide funding, support, and services for children with ASD and their families (Minister for Families Community Services and Indigenous Affairs, 2007). The HCWA package is currently being superseded by the rollout of the National Disability Insurance Scheme (NDIS) across Australia and hence the opportunity to benefit from a close exploration of the HCWA may contribute to this process.
Limited research evaluating the effectiveness of the HCWA package has been conducted. No study has evaluated the parent perspective on the HCWA initiative as a policy and there were insufficient studies of parents’ reactions to the HCWA package (Prior, Roberts, Rodger, & Williams, 2011; Wicks & O'Reilly, 2013; K. D. Wilson, 2013; K. D. Wilson & Watson, 2011). Moreover, there is limited research on disability policy compliance with human rights standards, especially in Australia. Research on the HCWA package is important because it has the potential to identify areas of strength and weakness from a consumer and human rights perspective and helps inform future government policies and initiatives such as the NDIS and to improve the quality of life for children with ASD.
A qualitative approach of Multimodal Critical Discourse Analysis (MCDA) was used to examine the HCWA package across three landing pages from two government departments: FaHCSIA and DEEWR. In 2013 data were selected from the HCWA package over several months during the implementation of the HCWA package across Australia. The researcher, as a parent of a child with ASD, selected and analysed the data to explore how the HCWA package positioned parents when they engaged with this federal government initiative. Kress and van Leeuwen’s (2006) grammar of visual design provided a framework to analyse online web content using the researcher as viewer of the policy. The e-government autism policy was further analysed in terms of web accessibility and compliance with regulatory guidelines for federal government department websites.
The findings from this study reveal that the Australian Government positioned parents of children with ASD as consumers of the product of autism policy, in this case the HCWA package. This positioning was framed within a discourse of charity and medical models of disability that viewed autism as a problem of the individual and provided charity through funding, supports, and services (e.g. medical and education professionals). The charity and medical models of disability were entwined within a broader discourse of power where the Australian Government had power, position, and authority as experts over parents of children with ASD. This unequal distribution of power added to the tensions within the autism community and the cycle of blame between parents and professionals.
Good parenting - as it was constituted by the HCWA package - involved being informed and educated and willing to follow the advice of the Australian Government. Good parents furthermore complied with traditional western gender roles where women were viewed as the primary caregivers and nurturers of children with ASD, particularly in the early years. The Australian Government also positioned parents as neoliberal citizens who were responsible for the success of raising their child with ASD and the outcomes of that child in life and within society. Lastly, the study found that the HCWA package did not align with all general principles of Article 3, Convention on the Rights of Persons with Disabilities and was thus regarded as indicative of a violation of human rights for children with ASD in Australia.
Based on these findings, the study presents recommendations concerning the parent-as-consumer role in autism policy in meeting the best interests and needs of children with ASD and their families, which also have relevance to the current transition to the NDIS in Australia. An eight-step model is proposed to improve parent information and health literacy on ASD, which is important for improving parent decision-making for their child with ASD. In particular, a newly framed human rights model of disability is recommended as a means of moving forward from the social model of disability in critical disability studies and for advancing the rights of children with ASD in theory and in practice.
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