Adventures in becoming a ‘legal’ adult with severe intellectual disabilities: personal and research perspectives

Michelle King1, Daelle Bunker

1Australian Centre for Health Law Research, Queensland University of Technology, Brisbane, Australia

Background:
People living with severe intellectual disabilities transitioning to adulthood, together with their decision-makers/supporters, move through multiple complex issues in our legal and bureaucratic systems in Australia. This process is not well managed or understood. We need to know more about how this works for people in their lives.

Method:
This paper tells a personal story about Daelle (Michelle’s daughter, and a young woman living with severe intellectual disabilities) and her journey to legal adulthood. This personal ethnography is used to frame results from Michelle’s doctoral research. Michelle conducted in-depth interviews about the lived experience of transitioning to legal adulthood with 10 “participant pairs”: people living with severe intellectual disability, and the person who most often acts as their legal decision-maker/supporter. Using constructivist grounded theory, the process of transitioning to legal adulthood while living with severe intellectual disabilities in Australia is explored.

Results:
Using our personal story as a framework, this paper presents preliminary results from this research about becoming a ‘legal’ adult while living with severe intellectual disabilities. The operation of the NDIS, Centrelink, and guardianship processes in Queensland provide illustrations of how our systems work (or fail to work) for people who lack ‘legal capacity’ in adulthood. These examples demonstrate the complexity of the adulthood process for people living with severe intellectual disabilities and their supporters.

Implications:
Becoming a ‘legal’ adult while living with severe intellectual disabilities challenges our shared social ideas about adulthood, citizenship, legal capacity, and supported decision-making. These are difficult issues that are not well resolved in the current legal and bureaucratic landscape in Australia. It is vital to include the experiences of people living with severe intellectual disability, and their decision-makers/supporters, in conversations about legal decision-making in our changing disability environment.


Biography:

Michelle King is a sociologist and lawyer completing a PhD in law at the Australian Centre for Health Law Research at QUT. Her work is about legal and administrative decision-making as people who have severe and profound intellectual disabilities transition to adulthood in Australia. She is also an advocate and decision maker/supporter of her 20 year old daughter, Daelle, who lives with severe and profound disabilities. This paper is about our experiences and Michelle’s research work.

Daelle Bunker is woman living with severe and profound disabilities. Her experiences have shaped Michelle’s research work.  People with severe intellectual disabilities easily become invisible in our society, even in disability advocacy and research. Daelle may not speak to us directly, her presence and her lived experience is vital and important.

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