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Difficult Choice for Parents with Disabled Children


Dr Rozanna Lilley is a doctoral candidate at the Children and Families Research Centre, Macquarie University. She is researching the experiences of mothers whose children with autism are transitioning to primary school in New South Wales. She has a previous doctorate in Anthropology from the Australian National University (1994).

 

Making a decision about where to send a child with a disability to school in NSW occurs within the context of a highly fractured education field, divided by debate regarding both what is best for a child with a disability and for society as a whole. Social justice arguments advocating inclusive schooling do battle with special education arguments advocating expertise and the promise of the partial remediation of deficits. In this situation, the choices available to parents of students with disabilities are often both constrained and difficult.

 

I have been researching the processes of primary school ‘choice’ as experienced and narrated by mothers of children with autism in Sydney. When deciding on placement, mothers are making choices between Independent, Catholic and state (DET) schools. They are also making ‘choices’, or being allocated places, in a variety of settings, both segregated and non-segregated, within these systems.

 

The findings discussed here derive from interviews conducted in 2009 and 2010 with 22 mothers whose children with autism were about to begin Kindergarten. Of these 22 women, who kindly allowed me into their lives, five were sending their children to schools in the Independent sector. Four of these families had chosen segregated class placements.

 

Given the current push (both legislative and ideological) towards the inclusion of students with disabilities in regular classes, I was interested to find out why mothers chose support classes or special schools. Special education expertise was the single most important factor. Often this first year of primary schooling was perceived as a continuation of early intervention therapies children had been receiving. This was especially the case where the school provided educational programs specifically tailored towards children with autism. The Independent sector, which includes all of the schools and ‘satellite’ or support classes run by Autism Spectrum Australia, makes an especially important contribution in this regard.

 

Interviewees also conveyed a strong concern with the happiness of children, with many parents hoping that a segregated setting will provide greater happiness on the grounds that it is a more protective environment. A common parental misgiving about segregated settings was the negative influence of disabled peers. Generally expectations of academic achievement were low, with only one couple, whose son did not have an intellectual disability, seeming genuinely worried about this.

 

All of these factors need to be considered in the context of widespread dissatisfaction with the levels of funding and support available for children with autism (and other disabilities) in regular classrooms. For some families, despite the international push towards inclusive schooling of children with disabilities, and both federal and state legislation that supports this right, little seems to have changed. What has altered is that many more students now have confirmed disabilities, with autism being one of the fastest growing categories. At the heart of the school choice process across all sectors are parents (frequently mothers) who, in their efforts to look after those whose vulnerabilities are amplified by developmental difference, make pragmatic decisions offering their children the best available care and education.

 

Rozanna Lilley
Children and Families Research Centre
Macquarie University





 

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