Down Syndrome Australia

About the organisation 

Down Syndrome Australia is the national peak body for people with Down syndrome, their families and supporters. As a not-for-profit organisation, their purpose is to drive societal change and provide a strong national voice, so that people with Down syndrome are fully included and treated fairly. The voices and rights of people with Down syndrome shape everything they do. To reflect this, people with Down syndrome are employed in meaningful roles across projects, such as health and employment, and provide organisational leadership through representation on the Board. Working in partnership with state and territory associations, and other disability representative organisations, Down Syndrome Australia provides information, resources and advocacy to help improve lives across the country. 

Ageing Well with Down syndrome 

The project 

Throughout the first year of our partnership, Down Syndrome Australia developed a new series of accessible resources to support people with Down syndrome as they age. The health resources were guided by an Ageing Advisory Group and shaped by people with Down syndrome, their families and supporters.  

The resources covered mental health, dementia, menopause and preventative healthcare. They are designed to help people recognise early signs of age-related conditions, access support earlier and make informed decisions about their health and wellbeing. 

Building on this work, DSA will expand the Ageing Well with Down Syndrome initiative to provide more practical information for people with Down syndrome, families and supporters. The next phase will continue to be led by the Ageing Advisory Group. It will include a series of live and recorded webinars, as well as accessible video resources.  

Together, these resources will provide practical information on ageing, health and future planning. 

Why it matters 

People with Down syndrome are living longer than ever before, from around 8 years in 1950 to around 60 years today. However, they still experience much poorer health outcomes than the general population.  

Conditions such as dementia, osteoporosis and diabetes are more common in people with Down syndrome and can be missed or misunderstood. This can mean people do not always get the right support or care when they need it. 

This project will help address that by providing clear, accessible health information for people with Down syndrome, families and supporters. It will help people better understand changes in health, know when to seek support and feel more confident speaking up about the care they need.