10-07-2025
Disability-led research project exploring when safety becomes a restriction for adults with intellectual disability
Like most young adults, Ruth Faragher is navigating independence.
The 29-year-old, who has Down syndrome, has lived in a share house, managed her money, gone on holidays with friends and secured work across different universities.
Ms Faragher said she had always been supported by her family to try new things.
"Sometimes I make mistakes, but everyone does," she said.
In her latest role at the University of Queensland (UQ), Ms Faragher is part of a team researching when protection becomes restrictive for adults who live with an intellectual disability.
"Support workers need to know how to decide what to do," she said.
"[In] some situations they should take over.
The study is one of 15 disability-led research projects focused on improving safety for people with disability which have received funding from the National Disability Research Partnership (NDRP).
The projects aim to address critical safety gaps identified by the disability royal commission, which was handed down in 2023 and contained more than 200 recommendations for change.
Leading the research is UQ's Professor Rhonda Faragher, who is also Ruth's mum.
The inclusive education and diversity professor said she believes sometimes people with intellectual disabilities are wrapped in cotton wool by those who are supporting them.
"The more you protect people, the less they have [the] opportunity to learn and grow and to develop their own autonomy," Professor Faragher said.
The first phase of the study involved hiring and training people with intellectual disabilities as research assistants to help co-design the study's proposal.
She said its end game would be to provide "helpful guardrails" for National Disability Support Scheme (NDIS) workers, as well as parents and carers, so they could best support people with intellectual disability.
"We at no point want to suggest that we should remove support or we should make everybody pretend to be independent," Professor Faragher said.
"It's not something that I think is a good goal for people."
She said it was important to find a way of "making sure that people can continue to live lives of meaning and purpose" while not being "overly constrained".
"We want to explore how to balance that," Professor Faragher said.
NDRP CEO Mary Sayers said her organisation chose the theme of safety for the projects because it impacted "all elements of people's lives".
"The disability royal commission told us about some of the systemic injustices that are happening for people with disability that are leading to violence, abuse and neglect," she said.
The commission heard from almost 10,000 people with disability, their families, and advocates over more than four-and-a-half years.
"This first funding round supports co-designed research that was recommended by the royal commission, that people with disability are at the forefront of the solutions that are needed in their life," Ms Sayers said.
The NDRP received funding from the federal government to support the research program.
The independent non-profit distributed $900,000 across the 15 projects, which will be followed by more funding for larger projects.
Some of the other projects will investigate topics including how families of children with disability experience family violence and whether group homes are the safest option for people with intellectual disability.
The NDRP has been in development since 2000, but formed as an independent organisation only a year ago.
"It was established to strengthen the disability research ecosystem," Ms Sayers said.
"Putting people with disability at the forefront of that research ... can really impact on policy and practice."
All the projects are expected to run for six to 10 months and will involve university researchers working with people with disability, First Nations people, disabled people's organisations, and culturally and linguistically diverse communities.
"This funding round is designed to support relationship building and knowledge sharing, and the grants will help research teams to deeply understand the issue by hearing different perspectives," Ms Sayers said.
Down Syndrome Australia CEO Darryl Steff said the projects would all contribute towards the outcomes recommended by the disability royal commission.
Mr Steff, who is also involved in the UQ study, said that "disappointingly", since the royal commission's final report was handed down, there had only been "some change".
