Having a say: Down Syndrome Advisory Network (DSAN)

Dr Ellen Skladzien1

1Down Syndrome Australia, Australia

People with Down syndrome are living longer and healthier lives and have increasing opportunities to be involved in their communities. But there are still challenges to face.  As the national advocacy organisation, Down Syndrome Australia continues to fight against low expectations and stigma.  We work to advocate to Government and inform policy development to lead to better outcomes for people with Down syndrome and to ensure they are included as equal members in our communities.

Over the last 18 months, Down Syndrome Australia (DSA) has developed a new initiative to enhance the involvement of people with Down syndrome in our advocacy work.  We have established the Down Syndrome Advisory Network, which is a national self-advocacy network for people with Down syndrome.  This network provides advice and input to the DSA Board and CEO on all of our advocacy work.

The DSAN has had a significant impact on the work of Down Syndrome Australia which is demonstrated by involvement through submissions, campaigns and other work.  In depth interviews have revealed that members of the network have gained skills in leadership, self-advocacy and communication.  The network has achieved outcomes in respect of changing attitudes, influencing policy, and improving project outcomes.

This presentation will provide an overview of the development and impact of DSAN. It will include discussion of development issues, support, and the challenges of the national approach. We will discuss the opportunities that our self-advocates have had to influence policy change at a national level.


Dr Ellen Skladzien has extensive experience in advocacy, leadership and strategic management positions within the not-for-profit sector. She has expertise in driving change in the disability, health and aged care system through evidenced-based advocacy. Ellen is passionate about ensuring that the voices of people with lived experience are at the centre of advocacy and research. She has led the development of a number of self-advocacy groups including the Consumer Dementia Research Network, and the Down Syndrome Advisory Network. She is a member of the Community Advisory Group at the South Australian Health and Medical Research Institute. Ellen has a Master’s degree in Clinical Neuropsychology and a Ph.D. in Cognitive Psychology from Washington University in St Louis.

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