
The voices of people with intellectual disability are often not heard in the busy and complex health care system, but Associate Professor Michelle Bellon – who holds a joint-appointment with Flinders University Caring Futures Institute and South Australian Intellectual Disability Health Service (SAIDHS/NALHN) – is making co-produced research a priority that will introduce positive change.

Since commencing her role as Research Lead with SAIDHS, Associate Professor Bellon has focused on prioritising research that involves people with intellectual disability to design and steer better health outcomes.
Six months into this program, Associate Professor Bellon – who is also Course Coordinator of the Bachelor of Disability and Developmental Education in Flinders University’s College of Nursing and Health Sciences – is especially pleased with progress being made in collaboration with the Cancer Council of South Australia, to examine cancer survivorship for people with intellectual disability.
“People with intellectual disability who have cancer face significant disparity in receiving appropriate cancer care, and we know this leads to poorer cancer-related outcomes compared with the general population,” says Associate Professor Bellon.
“There is also a significant knowledge gap in understanding cancer survivorship among people with intellectual disability, and this shows an urgent need for tailored, accessible and appropriate resources that are designed with and for people with intellectual disability.”
Working together with Associate Professor Bellon is Tim Cahalan, a Community Researcher with intellectual disability who has worked on several co-produced research projects at Flinders. Together, they aim to identify and improve health equity in cancer survivorship for people with intellectual disability.
“I understand doctors quite well but I still get confused by a lot of the words that doctors use,” explains Tim. “We need doctors to explain these serious health issues in a very easy way, so that anyone can understand what is going on and what treatment path is ahead of them.”
There is a need for more resources and supports so that people with intellectual disability can clearly understand all the available treatment options for themselves. “People with intellectual disability deserve to have all options presented to them, but what we sometimes see are medical professionals presenting limited pathways, such as only offering palliative care,” says Associate Professor Bellon.
“We have to change this and explore supported decision making in health. The United Nations Convention on the Rights of Persons with Disabilities requires us to recognise that people with disability have the right to enjoy the highest attainable standard of health without discrimination on the basis of disability. This collaboration will co-produce tailored and accessible resources and supports to achieve this.”
They have also applied for a Medical Research Future Fund grant to support a two-year project which will propel this co-produced research forward, combining the work of Flinders University researchers in cancer survivorship, palliative care, disability and psychology, community researchers with disability and health care professionals from SAIDHS, along with partners from the Cancer Council of SA, National Centre of Excellence in Intellectual Disability Health, South Australian Council of Intellectual Disability, Our Voice SA, Minda and Multicultural Communities Council of SA.
Several other projects that Associate Professor Bellon and the SAIDHS team are currently working on include the development of a mental health medicines training program for disability support workers, to prevent inappropriate use of psychotropic medicines for people with intellectual disability.
The team is also reporting on the new Health Care Access Service at Modbury Hospital, which provides access for people with intellectual disability and complex needs to medical and preventative health care under anaesthesia. This opens the door to immunisations, blood testing, imaging, dental care, cancer screening and physical examinations for people who find medical settings and procedures highly distressing and traumatic.
Associate Professor Bellon describes her role as leading high-quality research that aligns with the National Roadmap for Improving the Health of People with Intellectual Disability, and builds visibility of human rights and best practices in meeting the healthcare needs for people with intellectual disability.
“It all shines light on the importance and value of inclusive, co-produced research done in partnership with people with intellectual disability – and this results in stronger, more effective results.”