Building skills and confidence in advocacy and providing lived experience advice in health care for people with intellectual disability
Overview
The Learn and Lead Group (LLG) is a lived experience advisory group for the National Centre of Excellence in Intellectual Disability Health (or the Centre for short).
We are one of the nine consortium organisations that make up the Centre. As part of our role, we employ the LLG.
The group brings together 10 people with intellectual disability from across Australia. They build leadership and advocacy skills and advise the Centre on how to make the healthcare system better for people with intellectual disability. Members contribute to inclusive practices, influence decisions and have their voices heard.
Purpose
The LLG helps members build advocacy and leadership skills while gaining confidence, teamwork and public speaking experience.
The group ensures that lived experience directly informs the Centre’s work. Members provide advice on strategy, events and resources, supporting the Centre’s broader goals of improving quality of healthcare, building capacity and leading change in awareness and attitude.
How the project works
Members meet online every fortnight and take part in workshops and consultations.
Activities include:
- Exploring inclusion and advocacy
- Developing group rules, values and personal goals
- Creating an Acknowledgement of Country for meetings
- Consulting with the Centre’s teams on research, health resources, strategy and conference accessibility
- Taking part in other paid opportunities such as hosting podcasts, chairing webinars, joining committees and presenting at events
In March 2025, seven members attended a 1.5-day face-to-face meeting in Sydney to build rapport, contribute to the Centres’ three-year strategy and practise public speaking.
2024–25 Highlights
- 10 members actively participating
- Increased confidence, leadership and advocacy skills
- Input into the Centre’s
- Face-to-face meeting strengthened teamwork and learning
- Three members secured further paid work with DSA beyond the LLG
Voices from the project
“Given us the drive to want to be involved in more groups and other opportunities to have our voice heard and that there will be a change in the future to help people with intellectual disability to have good experiences in healthcare” – Sue, LLG member
“As a group we have learnt to build our confidence and skills” – Tessa, LLG member
“Going out of my comfort zone and going to a conference in another state, speaking in a workshop. I loved being on the stall at the conference in Adelaide. They were both amazing.” – Sue, LLG member
“I am proud of the work as it will see cultural change in society.” – Greg, LLG member
