Listening together: Do young people with disability and young carers feel heard?

This report explores how young people with disability and young carers experience being listened to by the services, organisations and people in their lives. The Australian National University report is based on two co-designed national surveys involving 72 participants aged 15–29, with researchers who have lived experience of disability and caring helping design, analyse and interpret the research.

The findings show that being listened to is extremely important to participants. However, opportunities to influence decisions remain limited, with almost four in five participants reporting they had never been involved in advisory or co-design groups. Psychologists and counsellors received the highest ratings for listening and trust, while general practitioners and financial support services such as Centrelink were rated considerably lower. Many participants also wanted to provide feedback to services but lacked opportunities to do so.

Young people described good listening as being respectful, empathetic, non-judgemental and responsive to individual communication needs. When organisations failed to listen, participants reported serious consequences, including poor mental health, delayed or incorrect medical treatment, reduced trust in services, and reluctance to seek help in the future. They also highlighted barriers such as stigma, bureaucratic processes, and fear of negative consequences for speaking up.

The report concludes that organisations should build cultures of listening by improving disability and carer awareness, employing people with lived experience, creating safe and accessible feedback systems, following through on young people's input, and ensuring staff demonstrate empathy, respect and flexibility. These changes would help young people feel heard and improve service quality.