Lived experience changing attitudes and outcomes in health

An ambassador program led by people with Down syndrome is tackling dire health outcomes for people with intellectual disability and providing inclusive employment.

The power of lived experience is being harnessed to equip health professionals with the knowledge to treat patients with intellectual disability.

The Down Syndrome Australia Health Ambassador Team provides education to health professionals and students, encouraging them to focus on the person, not the disability, in their treatments and diagnoses.

The program began in March 2021 after Down Syndrome Australia received a grant from the Department of Social Services in 2019 to run a program that would improve the health outcomes of people with Down syndrome through inclusive communication, to combat dire statistics that showed “appalling” health outcomes for people with intellectual disability.

“We knew that there were appalling statistics and the only way to change those statistics is for health professionals to listen to and hear from people with Down syndrome and intellectual disability about how they see their own health and health outcomes and inclusion in health,” explained Natalie Graham, health program manager at Down Syndrome Australia.

After receiving funding, the organisation put out a call amongst its membership for ambassadors with Down syndrome to become health ambassadors, advocating for people with Down syndrome and intellectual disability more broadly.

Applicants were required to share a story about their own health experience via video, to show their communication skills. Communication didn’t have to be verbal, as the project seeks to include all communication styles and demonstrate to health professionals the need to find a communication style that works for each individual to include them in their own health.

The ten chosen ambassadors were then put through an eight-week Zoom course on presentation and public speaking, before creating their own story with a core message about inclusive communication and their own health experiences.

And now, they present to health professionals and students around Australia to encourage them to make their practice more inclusive for people with intellectual disability. Each ambassador is paid award wages, making the program an inclusive form of employment.

The ambassador program is rooted in lived experience; each ambassador presents based on what they have gone through in their own health journey, including the good bits and the bad.

“What we show health professionals is if you make a small, reasonable adjustment… it can make a huge difference to the inclusion and health outcome of that person that you are caring for,” Graham said.

Having a diversity of ambassadors means the presenters can be tailored to a particular audience, depending on their experience and what the audience wants to learn about.

The presentations aim to situate the individual health experience in the context of Australia’s National Roadmap for Improving the Health of People with Intellectual Disability, the UN’s Convention on the Rights of Persons with Disabilities, and research showing a lack of confidence in speaking to people with disability.

“Hopefully, we’re breaking down that barrier a little bit by having someone with an intellectual disability actually educating health professionals,” she said.

Graham said feedback from health professionals and students had shown that the ambassador program was providing valuable learning.

“[We tell them] look at the person… and treat the person with the symptoms that they’re presenting with, not a predetermined diagnosis of Down syndrome,” she said.

“Had we tried to do this a few years ago, we may not have gotten the same response. But almost every time I knock on a door, they want to hear our message.”

Graham said research is about to begin into the opportunities that the program has provided for the ambassadors themselves.

The program is co-designed and completely led by the ambassadors, with Graham on hand to facilitate.

“Anecdotally, I have seen an increase in confidence in almost all of them. I’ve seen an increased awareness of the health outcomes that people with intellectual disability and Down syndrome face and their desire to help be part of that change,” she said.

While the program is dependent on funding, Graham said one day she would like to see it embedded in every health, nursing and allied health degree.

“I think it is so important that from the ground up, health professionals understand that there are 450,000 people in Australia with an intellectual disability. Down syndrome is one of those. And if we can embed that education as part of their learning rather than as an adjunct, that would be gold for me.”

The health ambassador program is a finalist in this year’s HESTA Excellence Awards.