Mater invites Queenslanders with disabilities to help shape health care

Mater Research is inviting people with intellectual disabilities and autism as well as their carers to participate in a program aimed at improving the way healthcare services are delivered.

Researchers from the Mater Intellectual Disability and Autism Service (MIDAS) are developing a new education and training program for doctors, nurses and allied health workers, and the organisation is seeking input to co-design the framework.

The first participants in the Enhancing Access to Services for Your Health (EASY-Health) study are from the Endeavour Foundation’s Learning and Lifestyle Centre in Toowoomba. Mater Research is looking for more participants to join the study at its Brisbane and Wide Bay sites.

Chief Investigator and Psychiatrist Dr Cathy Franklin from the Mater Intellectual Disability and Autism Service (MIDAS) said, “Health staff receive very little education or training on how to meet the needs of patients with disabilities or those on the spectrum, and this can lead to poorer health outcomes.

“The lack of understanding can contribute to poorer relationships between healthcare providers and patients; an unwillingness by clinicians to be more adaptive in treatment plans; and some health issues being dismissed as symptoms of the disability, instead of being properly investigated,” Dr Franklin said. 

Mater Researcher Dr Katie Brooker said people with intellectual disabilities and autism will be part of the process at every stage.

“Our study will listen to the experiences of people with intellectual disabilities, those on the autism spectrum and their supporters to help us understand the problem, so we can design and deliver training solutions and then evaluate the programs at our pilot sites,” Dr Brooker said.

“People with intellectual disabilities die up to 30 years earlier than their non-disabled peers and often die from preventable causes. Those on the autism spectrum also die sooner. There are also higher rates of physical and mental health conditions that are often undiagnosed or poorly managed, which is why we need to improve training and education for our healthcare professionals,” she said.

Endeavour Foundation Interim CEO David Blower said, “The best way to understand how we can meet people’s health needs is to simply ask — and that’s something that should be central to every program designed for people with a disability. They are the ones with the lived experience who are in best position to show us the kind of change that is needed.”

The pilot study will run at five sites: Endeavour Foundation Toowoomba – Darling Downs; Mater Young Adult Health Centre – Brisbane; Queensland Diabetes and Endocrine Centre – Brisbane; Prince Charles Mental Health Service – Brisbane; and Maryborough Mental Health Service – Wide Bay.

The research is funded by the Australian Government Department of Social Services.

Image credit: MIDAS Client Eli Waddell with Dr Cathy Franklin. Image supplied by Mater Research.