“Inclusion is tolerated to a degree because … it’s part of our policy. It’s part of our law.
So it’s tolerated to a point. Acceptance, I’m not so sure…. acceptance is a completely
different thing… you have to live it and feel it to know the depth of the emotions
involved” (Father of two teenagers with cognitive disabilities).
The arena of educational inclusion poses a significantly growing challenge to policy makers and parents alike in which the need for the development of an education policy that effectively facilitates the educational and social inclusion of disabled children and their parents’ within the processes of inclusion is required. Rises in the level of students within Australian schools diagnosed as having a cognitive disability, dysfunction or delay (Australian Institute of Health and Welfare, 2008:8) make this category of disability an increasingly significant area of concern within both the framework of contemporary educational policies and parental experiences of educational inclusion. In focusing specifically on the ways in which parents of children with a diagnosed intellectual delay or cognitive dysfunction (Autism, ADHD, ADD PDD-NOS, Global Delay) experience educational inclusion, this paper speaks to an increasingly important area within educational policy formation and implementation.
This investigation approaches the educational inclusion of children with cognitive disabilities as an important and challenging issue which holds the potential to impact on both the human rights of children with cognitive disabilities and their parents alike. It therefore recognises the multiple structural restraints through which parents must navigate their child’s process of inclusion within schools. As such it supports calls for parents to be given “ an ongoing voice in the development of the policies and strategies that affect their lives” (Shut Out: The Experience of People with Disabilities and their Families in Australia, 2009:vi).
Educational inclusion within Australia is now being enacted within an anti-discrimination policy framework which promotes the incorporation of inclusive education as a standardised form of educational practice for children with cognitive impairments (Better Pathways, 2006:3). It is within this anti-discrimination policy based frame work that parents of children with cognitive disabilities are required to access and provide formal medical confirmation of their child’s disability and allow additional IQ testing of their children in order for schools to request funding and aids. Within this framework parents are also designated the role of having to negotiate with staff and schools to implement strategies that ensure their child’s needs are met in ways that parents of non-disabled children are not required to do. Yet despite the integral role that parents of children with disabilities play in facilitating their child’s educational inclusion, the impacts, experiences and understandings of inclusion, including the processes and practices through which it is implemented, have rarely been studied from a parental perspective.
This paper upholds parental perspectives through investigating the ways in which broader understandings of the policy of social inclusion shape and inform their expectations of the inclusion process and how in turn the processes and practices of inclusion are experienced in relation to such policy ideals. This appraoch enables parents, within a research format , to inform policy and academic discussions as to whether or not the practices of inclusion reflect the broader ideals outlined within inclusive educational policies and practices (Runswick-Cole, 2008:176). Such an approach empowers parental voices by removing control of the topic of educational inclusion from the confines of academic and educational professionals .
In so doing this investigation found that there are significant disparities being experienced between the policy based ideal of inclusion as a pathway toward equality and the lived parental experiences of their children’s negation and exclusion within the inclusion process . For many parents within this study inclusion is seen to operate via a process of exclusion due to the multiple processes and measures their children are required to undergo in order to achieve funding. Through the use of additional measures such as IQ testing a child with a recognised disability may be ruled ineligible for support and therefore be excluded from the inclusion process. Such processes create the arena in which parents express having to continually fight for their child’s support needs to be acknowledged and met. For these parents the ideals of inclusion have become an illusion.
“People think that because my son has Asperger’s but goes to a mainstream school that he must be ok and that things must be getting better. You know…. That kids with disabilities are being accepted….That inclusion is working. But what they don’t see is that my son is struggling. He gets no support from the school because he doesn’t qualify even though the doctor said that he has Asperger’s. He spends his time at school alone in the library. The other kids don’t accept him. This frustrates me because I can see that he really does need the help but I can’t get the school to see that. I feel like I’m always on the phone asking for support for him but never getting anywhere. It’s like this constant bad dream that I can’t wake up from and I can’t get anyone at the school to pay attention to me. ”
This investigation concludes that despite the broader policy of equality upon which educational inclusion is founded, the successful inclusion of children with cognitive disabilities within schools is still being hampered by the lack of regard, understanding, professionalism and support that parents describe experiencing and the overall unwillingness of schools to individually tailor learning packages for those with cognitive differences. Parental experiences of educational inclusion therefore indicate the need to further examine, expose and replace the structural and systemic restraints currently being implemented within the Australian education system.