Improving services for people with a disability demands a multi-disciplinary approach. With unprecedented activity surrounding the introduction of the National Disability Insurance Scheme (NDIS), for which the Hunter is a launch site, researchers at the University of Newcastle established the Disability Research Network in 2012.
The Network brings together researchers whose work has relevance to people with any type of disability and provides a forum that links them with any other interested parties in the region.
The Disability Research Network’s activity has already been translated into practical benefits for people with disability, through feedback on the draft legislation and rules regarding eligibility for the NDIS.
Co-Convenor Associate Professor Bronwyn Hemsley, a speech pathologist, conducts research on how people with severe communication difficulties can better navigate the healthcare system.
People who cannot communicate using speech, either due to conditions like cerebral palsy and intellectual disability or due to an acquired injury like a stroke, are estimated to make up about 15 per cent of patients in hospital at any time.
Unfortunately, they face three times the risk of an adverse safety event in hospital, like a fall or a medication error. Since they cannot communicate their preferences around treatment, they may be excluded from decisions about their care.
Despite traditional communication aids such as alphabet boards or the popular mobile technology communication apps, Hemsley’s research has shown that communication is still compromised because of health workers’ attitudes to these patients.
“If society’s attitude is that this person can’t take part in communication, or if people don’t know how to adapt their communication, even if technology is available it doesn’t necessarily help,” Hemsley said.
The work of her research group has shown that people with severe communication difficulties need extra support from a carer when they go to hospital – not to take the place of the patient in communication, but to support the patient’s communication with health staff.
The rules of the NDIS now allow people with severe communication impairments to allocate their NDIS funds to carer communication support while in hospital.
“As our research shows that carers have an important role in protecting patients with communication difficulties in hospital, so these changes to the NDIS might mean a cost savings to the Government if those patients experience fewer safety incidents,” Hemsley said.
An important part of the work of the Disability Research Network is to listen to people who live with a disability.
“Rather than seeing a person with a disability in a passive way, we acknowledge that they have much to contribute as experts in their own right. Including people with severe communication disabilities as members of the research team, expert reference groups, and participants, means our research can be relevant and makes it easier to translate the findings to the real world where we can make a difference,” Hemsley said.
Learn more about UON’s Faculty of Education and the Arts Research Directions in 2015.