Systemic advocacy and leadership by people with intellectual disability

Jim Simpson, Shu Hua Chan

Systemic advocacy can be a powerful weapon for improved lives for people with intellectual disability, but it must be done well and people with intellectual disability must be at the forefront of it.

In our keynote, we will talk about the evolution of the Council for Intellectual Disability’s approach to systemic advocacy, moving from just lobbying government to more sophisticated campaigns, and moving from speaking for people with intellectual disability to our leaders with intellectual disability taking central roles in everything we do.

We outline elements of some recent successful campaigns including the roles taken by people with intellectual disability, the power of stories and imagery in campaigning, careful use of the media, working with researchers to show evidence of the need for change and the kind of change that will work, forming broad alliances across the disability and broader community, lobbying of local members and interest based negotiation.

Test case litigation is another advocacy tool which has potential to be used more for people with intellectual disability that has it been to date.

People with intellectual disability themselves take central roles in identifying advocacy, CID’s priorities, delegations to decision makers and speakers at events. We will talk about the support our leaders with intellectual disability receive to assist them to carry out these roles and the impact people with intellectual disability have on decision makers.

The focuses of systemic advocacy have changed over time from pressing for access to “special education” and disability support services to broader advocacy for full inclusion in the community and mainstream services. We will talk about some of the key challenges to full inclusion that systemic advocacy must meet.


Jim Simpson is a lawyer and advocate who has worked in the disability field for 35 years. He took a central role in establishing the Intellectual Disability Rights Service in Sydney. He is a Senior Member on the Guardianship Division of the NSW Civil and Administrative Tribunal and does systemic advocacy work for the Council for Intellectual Disability. He is a member of the Intellectual Disability Reference Group of the National Disability Insurance Agency. Jim has had a leading role in many areas of service system and legislative reform including well supported alternatives to gaol for offenders with intellectual disability and legislation covering guardianship, disability services and independent complaints and monitoring bodies. In recent years, Jim’s work has particularly focused on improved health care for people with intellectual disability and the development and implementation of the NDIS. Jim is a recipient of the Justice Medal of the NSW Law and Justice Foundation.

Shu Hua Chan is a long term board member and the current the Chairperson of the Council for Intellectual Disability. She is passionate about speaking up and sharing the stories of people with intellectual disability to make good changes happen. Shu thinks that people with intellectual disability have a lot to teach you if you give them a chance and listen to what they have to say. She believes it vital to hear from people with CALD backgrounds in the disability space and to make information accessible for everyone. Recently she has been focusing on the health of people with intellectual disability. She is the face of the Council for Intellectual Disability’s Our Health Counts campaign and has been speaking to the media and senior politicians about the dire health situation of people with intellectual disability. Apart from her advocacy and board work Shu also works part time at the Multicultural Disability Advocacy Association of NSW.


The Australasian Society for Intellectual Disability (ASID) is a not-for-profit organisation that brings together research, policy and practice to improve the lives and services for people with a disability.

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