Growing up Making Decisions: When best interests are not in the best interests of young people with disability

This research looked at what supports young people with cognitive impairment need to develop skills to identify what they want and do not want, and make decisions for themselves. The research also tried to understand if this was different for young people living with family and young people living in other settings.

Many people with disability 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, young people with disability, their carers and other stakeholders were interviewed 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 other settings.

The research team included people with disability, including young people with disability in the role of ‘community researchers’
Community researchers led the interviews with young people with disability who participated in the study
Partner organisations Children and Young People Australia and Inclusion Australia were involved in the research, from concept to design, from data collection to analysis and reporting. Working with these partners from the start of the project made sure the team thought about how the research will be used and how the outcomes can be most useful to the community
Shared decision-making power: The project was managed as a collaboration with each member of the research team having equal voice and power
Data was analysed and checked with the whole research team – including community researchers. This improved understanding and improved the way data was reported.

The research first looked at what young people needed. We found:

Young people want to make decisions across different aspects of their lives.
Young people had to make some decisions based on age, including about leaving school, finding a job, or where to live.
Young people in out of home care need to make a lot of decisions when getting ready to leave out of home care at the age of 18 – more than other young people.
Young people and their families talked about different support needs depending on the type of decision, their age, and in different settings.

The research then looked at what supported young people to develop skills. We found:

The process depended on the support needs, the type of decision, and the supports around the young person.
Long-term, incremental learning was considered very important – starting as early as possible.
Similar to supported decision making, the learning process was enabled by people who young people trusted or had good relationships with.

The research then looked at what improvements could be made. We found:

Systems such as education, health, NDIS, and out of home care, could be improved so that young people have the opportunity and support to be part of the decision-making process.
More information should be provided about rights – to young people with cognitive impairments and their families, and also society more broadly.
More information and resources should be provided to young people, their families and services about supporting young people to build capacity in decision making.
Programs are needed to support young people build capacity in decision making – including specific areas such as leaving out of home care, NDIS planning, moving to adult health care, leaving school, finding employment, moving out of home.

This research shows that learning to make decisions is a natural process for children and young people as they grow up. For young people with cognitive impairment, this is a more conscious, intentional and resource intensive. This process needs support both at home and in other settings – including the education system.

Community researchers have presented the key findings to a conference: see video below
An easy read version of the report is also available (see resources below)
In addition to reporting back to the community, the research team is writing a paper on the findings relating to young people in out of home care and the supports they may need to prepare them to engage in the planning process to exit out of home care.

Visit the UNSW project website for more information: Growing up Making Decisions

Resources

Growing up Making Decisions website

Project report: Growing up Making Decisions

Easy read report

Video summary

Video: sharing findings

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:

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Growing up Making Decisions: When best interests are not in the best interests of young people with disability

Resources

Video summary

Video: sharing findings

Project Team