Improving communication and health outcomes for people with Down syndrome
Since 2020, Down Syndrome Australia has been running the Health Ambassadors project to make health care better for people with Down syndrome and intellectual disability. The program trained 10 Health Ambassadors from across Australia to work with health professionals and students, sharing their experiences and practical advice on communication, respect and inclusive care.
Why it matters
People with intellectual disability often experience poorer health outcomes than the general population, much of which is preventable. Good communication between health workers and people with Down syndrome and intellectual disability improves outcomes, ensures inclusion in decisions, and makes services safer and more respectful. This project supports DSA’s strategic goals: improving quality of life, building capacity and collaboration, and leading change in health equity.
Project goals
- Improve communication between health workers and people with Down syndrome
- Develop co-designed, accessible health resources
- Deliver training to students and health professionals
- Ensure lived experience guides health practice and resources
How it works
Health Ambassadors run training sessions and workshops, share real experiences, and help create accessible resources such as Easy Read guides and apps. They work nationally, in person and online, and contribute to webinars, conferences, and other health projects.
Key highlights
- 10 Health Ambassadors employed across Australia
- Over 80 training sessions delivered to students and health professionals
- 7 national conference talks delivered
- 2 apps launched on Apple and Android with around 1,000 downloads each, rated 4.9/5 stars
- Over 1,500 downloads or views of the Health Screening tool
- Ambassadors have participated in podcasts, webinars, and other paid opportunities
2024/25 highlights
- 9 presentations to healthcare students or health professionals
- 2 health apps launched on Android
- 10 health professionals completed the online training
- 1,327 views of the Health Screening tool
Voices from the project
Olivia
We promote inclusive communication between people with Down syndrome and health care workers, using words we can understand. I love presenting, making my voice heard.
Naomi
We advocate for better health outcomes for people with Down syndrome and other disabilities. We also help with other work to improve health care. I am very proud of my work on the National Roadmap Governance Committee. I wrote the foreword to the Intellectual Disability Health Capability Framework. It’s a document that says what we should expect health care workers to be able to do when they work with people with intellectual disability.
Amelia
What do the Health Ambassadors do? We educate health professionals and students about how to treat people with a disability. We share our own experiences of health care. We use it to explain to health care workers about communication and making things better. Our talks focus on respect and communication.
Rohan
We make sure that we have health professionals who can do their job properly when they work with someone with a disability. This means checking communication properly, attending to them, including them in decisions. We get good feedback from the people we present to.
Kim
We are a voice. I represent people with intellectual disability on the ACT Disability Health Committee.
Caitlin
I like how we work together as a team. Our team was a finalist in the 2022 HESTA Disability Services awards for team excellence.
Gillian
We talk to health care workers about important things like decision making and health screening. We have made webinars, too.
Emily
We work on resources like Easy Read. We are working on a resource about visiting people in hospital.
Sometimes we also help with other work about health care. I have been involved in projects about making sure people get screened for health problems.
Alishia
What do the Health Ambassadors do? We advocate for better health outcomes for people with Down syndrome and other disabilities.
Hugo
What do the Health Ambassadors do? We help doctors and nurses to be better with communication.
Sometimes we give advice to other projects too. I give advice and honest feedback for a project on dementia.
This program is funded by the Federal Government under the Information, Linkages and Capacity Building (ILC) program and by other generous donors.