Professor Stuart Wark

Giving voice to those long silenced

Stuart Wark was already an advocate for people with intellectual disability in the 1990s when he had a pivotal experience in providing care and support to a rural woman we will call Ellen. For 50 years, Ellen’s life had mirrored society’s treatment of those with intellectual disability.

First at school, then when seeking employment and independent accommodation, her needs had largely been met as attitudes and services progressively improved. Ellen was living in a group home until one day, in her mid-50s, she fell over and broke her hip.

“At that stage Ellen was shipped off to a nursing home almost three hours away,” Stuart recounts. “She cried for two weeks until she died. And her flatmates, with whom she had lived for over 30 years, her disability support staff, everyone cried for that two weeks. It was a horrible end to a great story of how a person had been proactively supported as her needs changed until she began to age, at which point everything just collapsed into an awful heap. That, for me, was symptomatic of fundamental issues we need to solve.”

Engaging with these complex problems – and seeking practical solutions – has occupied Stuart ever since, in various professional, voluntary and research roles. A UNE Alumni Community Award this year recognises his commitment to ensuring that people with intellectual disability living in rural Australia have access to the same support and services as their metropolitan counterparts.

“Often people with severe to profound intellectual disability end up having to move from their family home in a rural or regional location, due to their complex health-care needs,” Stuart says. “And many of those who don’t leave to be closer to those supports struggle to access the necessary specialist medical and allied health services they require.”

Stuart’s volunteer work in the disability space had begun before he heard about Ellen. While completing his Bachelor of Arts (Honours in Psychology) degree at UNE in the early 1990s he served with Challenge Armidale and the voluntary counselling service CareLine. Professional work with the then NSW Department of Community Services in western NSW only strengthened his resolve.

“I had some awareness of what that disadvantage looked like before moving to Cobar but it was a bit of a baptism of fire,” Stuart says. “I was the only community disability worker in town and my nearest support was in Dubbo, three hours away. I was very much working in isolation, with very few services.”

Sadly, what Stuart learnt then remains little changed today.

“The biggest challenge for rural people remains access to services,” he says. “The National Disability Insurance Scheme (NDIS) has been fantastic on one level, highlighting the needs of the approximately 2-3% of Australians who live with an intellectual disability, and it has allowed individuals more scope to choose what services they want. But this is next to useless if there are no services for them to access. That’s the reality of trying to roll-out a massive program across vast geographical distances.”

After leaving Cobar, Stuart took on senior executive and clinical roles with The Ascent Group (a not-for-profit disability service organisation, formerly Challenge Armidale). His contributions to Ascent, and other disability services across the New England/North West, and as a committee member of the Australasian Society for Intellectual Disability (representing rural people) continued after Stuart became a PhD candidate, then post-doctoral research fellow and now lecturer.

His PhD thesis topic – supporting people ageing with an intellectual disability in rural areas – continues to be the primary focus of Stuart’s ongoing research. Along with colleagues from the University of South Australia, he is currently investigating how older carers of adult children with intellectual disability cope as they age.

“It’s not uncommon for someone with an intellectual disability to go through premature ageing themselves by about age 50, so you can see the double impact where the ageing family carer and their child both move into residential aged care at the same time, because that is the only place that is able to give them the 24-hour nursing care they need,” Stuart says. “Now sometimes that may be appropriate, but a lot of the time it isn’t the right place for someone aged 40 or 50 to spend the next 30 years of their life. There is a giant void in rural areas and a lot of my work now is around seeing how we can avoid that situation occurring.

“I’m driven by a desire to see people supported, regardless of their location, so they can age in their chosen place. These are not easy solutions to find, but COVID has shown where things work reasonably well and where there are gaps that Telehealth and other mechanisms can help overcome the tyranny of distance.”

Now, as a Professor and the Year 3 Clinical Academic Coordinator at the School of Rural Medicine at UNE, Stuart also plays an important role in educating the next generation of medical students on the needs of those with intellectual disability. And there’s another important research project underway – considering how we can best provide end-of-life care for people with intellectual disability in rural locations.

One of the leaders of intellectual disability research in Australia, Professor Emeritus Trevor Parmenter AM, described Stuart’s dedication to the betterment of the lives of people with intellectual and developmental disabilities as “a beacon”.

“Stuart embodies the highest qualities of scholarship, combined with the deepest commitment to people who have been so often excluded from the community and discriminated against in the provision of even the most basic health support,” he says. “He’s helping to give them the opportunity to enjoy a quality of life comparable to others.”

For Stuart, the line in the sand is clear.

“Peoples’ lives, like that of Ellen, should not end that way,” he says. “We need to work out how we can better support and maintain the quality of life for people with intellectual disability as they age, within their local community.”