Supported decision-making experiences of young people with cognitive disability : activating agency, choice and control
Creators: name: Notara, Danielle Yvette
Publisher: name: Southern Cross University
Year: 2021
Subjects: Supported decision-making
Young people
Cognitive disability
Lived experience
Participatory

description: Supported decision-making intends to increase choice and control, yet little is known about young people with cognitive disability's experiences. This study explores how an emphasis on supported decision-making rights, in an era of individualised disability support, raises issues for young people with cognitive disability who are socially isolated. In doing so, the research aims to extend conceptual and practice-based understandings of supported decision-making, grounded in young people’s perspectives, to improve supported decision-making policy and practice.
description: Sixteen young people aged fifteen to twenty-four shared their lived experience of supported decision-making. The participatory design modelled an ethical approach, utilising tailored methods including mapping and interviews, to capture and reflect on the young people's experiences. The study's rights-based aims employed a combination of phenomenologically-informed and critical disability studies methodologies and aspired to deliver transformative social change outcomes.
description: The research addresses a knowledge gap in seeking young people’s views and perspectives, revealing the nuances of supported decision-making grounded in lived experience. Specific to young people’s choice and control was young people’s ability to determine who supported their decisions at different times. Amplifying these complexities was social isolation, which compounded young people’s limited access to the networks and resources they needed to support decision-making. Of paramount importance for young people then, was whether and how support to make decisions either enhanced or denied their agency.
description: The application of Young’s five faces of oppression framework illuminated how structural framings of young people’s supported decision-making mediated their agency, often restricting their choice and control. Inverting Young’s five faces within the context of contemporary critical disability studies provided a space to interpret the findings with a strengths-based lens. Doing so revealed how critical issues of power, inclusion, value, safety and equality permeate young people’s experiences of supported decision-making. Such a positive reframing of structural inequality is a distinctive contribution to knowledge and extends Young’s theorising to generate strengths-based possibilities for policy and practice.
description: The research highlights opportunities for policymakers to consider how the quality of supported decision-making mediates young people’s agency, the negative impacts of social isolation and the critical role of advocacy. Acknowledging young people’s preferences for choice and control in harnessing supported decision-making as a transformative process, could help ensure more responsive approaches. Further, recasting choice and control in supported decision-making in ways that young people understand, and can act on, holds the potential for activating their agency and improving supported decision-making policy and practice.