Early in her career as an occupational therapist, Di Winkler began working with patients who had experienced severe brain injuries. It was work she loved – supporting her patients and their families on the journey to recovery – but she was often frustrated by the lack of support options for these people.
"When I was working in rehabilitation, we discharged some young people to aged care when they weren't making progress in rehab and I just felt really uncomfortable with that,” she says. “People think it's only going to be temporary, but younger people end up getting stuck there because there’s nowhere else for them to go.”
And when young patients get stuck in the aged care system, they begin to lose skills they might have gained during rehabilitation. They also lose the opportunity to do basic things like make a cup of tea, connect with family or be with friends their own age.
Di wanted to do something to change that system. She began her PhD looking specifically at the issue of young people in aged care, and it was this research that led her to starting the Summer Foundation.
“I just saw some really practical things that would make a more immediate impact than a thesis,” she says. “And that was work I could start right away.”
The Summer Foundation
Establishing the Summer Foundation as a not-for-profit in 2006, Di initially wanted the organisation to provide high-quality information – for people at risk of moving into the aged care system, and for their families, who may not be aware of alternative support options.
“I wanted to help people make informed choices but also to connect people. I was really struck that many families felt like they were the only ones in that situation, that they were facing the choice to move their adult child into aged care.”
Since that time, the organisation has grown to become much more.
“It's about supporting people with severe disabilities to live in the community like everyone else,” Di says. “It’s about getting them access to the services and supports they need to be an active member of society and included in the community."
The Summer Foundation does this by working with people with a disability at every level. This might be through evidence-based research or co-designing new solutions for problems like housing. They also work with the government to define best practice in the disability sector, and elevate the stories of people with lived experience of disability.
“Some of the work that I’m most proud of is how we’ve supported people to tell their story in government inquiries and avenues like the Royal Commission,” she says. “Because I can sit there and talk about statistics or policy solutions. But at the end of the day that kind of firsthand experience of disability, that’s what resonates, and it's critically important.”
Putting research into practice
Although she still considers herself to be an occupational therapist, Di’s work with the Summer Foundation has enabled her to reach more broadly across the healthcare and disability services sector.
"I just work in a different sphere now. We’re advocating and changing the built environment to enable people to be more independent. So I think a lot about knowledge translation and how you might use research to help drive advocacy, as well as to change systems.”
Completing her initial qualification at La Trobe through a Bachelor of Applied Science (1990), Di went on to do a Graduate Diploma in Neurosciences (1994) and then a Master of Applied Science (2003), and eventually started her PhD at La Trobe.
“I'm curious and I love learning,” she says. “And in the disability sector, there's just so much more to know. There's also a lack of evidence to really help find solutions to persistent problems – so yeah, I'm passionate about rigorous research but also practical research."
Through a partnership with La Trobe’s Living with Disability Research Centre, Di has been able to maintain that rigor in the Summer Foundation’s research – both in how it’s designed, and how it’s implemented in practice.
“You need to be making sure that the research doesn't finish when it's published, that you actually consider how that knowledge will translate to actual changes for people – whether that’s people with disabilities or their families or clinicians.”
Access to high-quality housing for all
In 2015, the Summer Foundation began several demonstration projects, which piloted new models of disability housing. The first was in Abbotsford, Melbourne, in partnership with the Transport Accident Commission. Next came a project with ten apartments in Belmont, in New South Wales.
“So typically, we would purchase ten apartments in a larger residential development and then have one apartment as a base for support workers, who provide 24/7 support to the ten people that were all living in that location,” she says.
The predominant model of disability housing at the time was group homes, which assumed that the people living in these facilities don't have families, or a partner, who might want or need to live in the same location.
“One of the driving things about housing support is that ability to reconnect people with their kids or their partner – even if that’s just for the weekend. I’ve had people tell me about wanting a space where they can watch a movie with their kids, which is just not available to someone living in aged care or a group home.”
The project helped set a new benchmark in Australia, and changed thinking about what was possible in terms of housing for people with disability. From the success of that project, the Summer Foundation set up a separate entity called Liverty Housing – which replicates those projects across Australia. Liverty Housing now has over 400 apartments across the country.
Putting the end-user at the centre
Like any other marginalised community, people with disabilities don't often get opportunities that most people take for granted. The Summer Foundation continues to flip that expectation, putting people with disability at the centre of everything that they do.
“One thing that just amazes me about the disability sector in Australia is that there's not enough people wanting to deeply understand what the end user wants,” says Di. "In every other sector, people really value and pay for customer insights to understand how to design a product or service. And I just think it's a huge gap."
By engaging people with a disability at every level of the organisation, the Summer Foundation can bridge that gap – and build the capacity of people with disability to help design their own futures.
“And that’s why we’re so keen on investing in people with disability so that they can be leaders. Because if we're going to develop high quality, sustainable solutions – then people with disability absolutely must be at the centre of that.”
Dr Di Winkler AM completed a Bachelor of Applied Science (Occupational Therapy) (1990), Graduate Diploma Neurosciences (1994) and Master Applied Science (Occupational Therapy) (2003) at La Trobe University.
