Queenslanders with disabilities to help shape healthcare

Monday 13 September 2021

Mater Researchers are calling on 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.

The 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 are calling for people who are on the autism spectrum or who have intellectual disabilities to help 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, who is Director of MIDAS, said healthcare professionals often feel ill-equipped to work with patients with intellectual disability and those on the autism spectrum.

“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,” Dr Franklin said.

“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.

“We want our participants to co-design new training and education resources because they can provide invaluable and unique insights into what works.”

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.”

Endeavour Foundation Interim CEO David Blower said the Mater Research Study was an important initiative to improve access to meaningful health care for people with a disability.

“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,” Mr Blower said.

“People we support, and our support team, are excited to work with Mater Research to develop better models of care, which truly reflect the needs of people with intellectual disability and autism.”

The pilot study will run at five sites around the state:

  • Endeavour Foundation Toowoomba – Darling Downs
  • Mater Young Adult Health Centre – Brisbane
  • Queensland Diabetes and Endocrine Centre - Brisbane
  • Prince Charles Mental Health Service - Brisbane
  • Maryborough Mental Health Service – Wide Bay

The research is funded by the Australian Government Department of Social Services.  Visit www.dss.gov.au for more information.