Abstract Blur

The eternal child: When best interests are not in the best interests of young people with disability

Project Summary

This project seeks to better understand how to support young people with cognitive impairment in making the transition from a best interest's decision-making framework (UN Convention on the Rights of the Child) to a will, preference and rights model of decision-making (UN Convention on the Rights of Persons with Disabilities; CRPD). This project seeks to better understand how young people in different settings including family, out of home care, and institutional settings can be supported in a way that respects and supports their evolving capacity.

Many people with disability are infantilised and this can affect their transition to adulthood and beyond. Many have not been exposed to independent decision making, having to rely on caregivers through the transition. Failing to help young people build decision-making capacity can have long-term consequences for life choices and may lead to inappropriate permanent guardianship orders.

Working with CYDA and Inclusion Australia, this project will engage with young people with disability and their carers through a series of interviews and workshops to understand what policies and practices work and what changes are required in three key settings – for young people living with family, living in out of home care, and living in institutional settings.

Project Team

The project team is a collaboration between researchers at the Social Policy Research Centre (UNSW Sydney) and the Children and Young People with Disability Australia (CYDA).

The project team consists of:

• Prof Ilan Katz (Co-Chief Investigator), SPRC

• Rosemary Kayess (Co-Chief Investigator), SPRC

• Mary Sayers (Partner), CYDA

• Catherine McAlpine (Partner), Inclusion Australia

• Maeve Kennedy (researcher), CYDA

• Becky Rower (researcher), Inclusion Australia

• Dr Shona Bates (researcher and project manager), SPRC

• Julian Laurens (researcher/Lawyer), SPRC

• Prof Karen Fisher (advisor), SPRC