New approach to disability research

People with intellectual disability are being empowered to create their own research project, bringing fresh insights and helping to shape more fulfilling lives for Australians living with intellectual disability who are estimated to number around 700,000.

The project has been made possible thanks to the inaugural Endeavour Foundation Endowment Challenge Fund Inclusive Research Award granted to Felicity Crowther, a PhD candidate at Flinders University.

Ms Crowther’s research, ‘People with Intellectual Disability as Researchers: Exploring the Experiences of an Inclusive Research Team’, aims to put people with intellectual disability in charge at every step of the research process, from agreeing on the study area to developing and completing the research themselves – and captures their own experiences at every stage.

“They could decide to look at relationships between people with disability, jobs, school, family, friendships or even sexuality – the choice is theirs,” Ms Crowther says.

She says the researchers will receive training and develop new skills, make new friends and improve their self esteem – while revealing insights for the benefit of others.

Already several researchers with intellectual disability have been recruited, together with Ms Crowther’s research advisor, Ms Rachel High, who herself has intellectual disability and will help ensure the project is as inclusive and accessible as possible.

Ms High is keen to share her experiences to help others. “I’m a people person. I like to give,” she says.

Mary Whitford is one of the researchers already signed up to the project. Her goal is to change the way the broader community think about people with disabilities through her research.

“I want to teach others that people with disabilities can do things if given support, we are capable,” Ms Whitford says.

Ms Crowther says there will be multiple layers to the project, with participants supported in how to conduct ethical and effective research and feedback collected from them on their experience as researchers.

“This makes the research doubly valuable because not only do we have people with intellectual disability conducting their own research but we’ll learn from their experience in doing so,” she says.

Endeavour Foundation Acting CEO Paula Mayson says the newly created Inclusive Research Award provided by the Foundation’s Endowment Challenge Fund demonstrated an enduring commitment to supporting people with intellectual disability.

“We established the independently governed Endowment Challenge Fund in 2009 and since then it has provided in excess of half a million dollars in grants to support people with disability through community projects and research,” says Ms Mayson.

“This inclusive research project aligns perfectly with what Endeavour Foundation hopes to achieve in a post-NDIS world, empowering people with intellectual disability to make their own choices and contributing towards the greater good in the disability sector.”

Ms Crowther and Ms High will combine their skills with an expert PhD supervisory team including Flinders University’s Dr Fiona Rillotta (who is a multiple award winning lecturer in disability and community inclusion in Flinders’ College of Nursing and Health Sciences), to ensure the inclusive research study is undertaken in a rigorous manner.

The project’s grant will fund an honorarium to Ms Crowther’s researchers, contribute to their costs and fund their conference attendance so they can disseminate their research findings.

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