This Deafblind Awareness week (June 23 to June 29), leading Deafblind service, advocacy and community organisations are urgently asking for a standardised level of care from hospitals, allied health workers and medical practitioners when treating Deafblind patients.
This comes as more deafblind Australians step forward with stories of neglect in medical settings. Currently, there is no standard of care in Australia for people with dual sensory disabilities in health care settings.
Deafblindness is a combination of sight and hearing loss, which impacts a person's ability to communicate, access information and participate equally in society. Sometimes also called 'dual sensory loss', it was found in 2013* that around 100,000 Australians were deafblind. This figure is predicted to have grown with time.
According to Able Australia CEO Lynette McKeown, people who are deafblind have complex communication needs which are often ignored by healthcare professionals when providing care and treatment.
"The nature of deafblindness often leads to the person receiving fragmented information, not being heard, nor understood. This is because many healthcare settings, particularly hospitals, aren't set up to provide the necessary support for them," said Lynette.
"We see that dual sensory loss, such as deafblindness, leads to higher rates of hospitlisation, poorer health outcomes, more healthcare encounters and higher rates of communication breakdown.
"This is simply not ok. Healthcare providers and medical practitioners need to transform how they deliver diagnoses, results, plans and treatments to deafblind patients."
Jael Espinal is Deafblind and a representative for Deafblind Australia. Many of her peers report spending long periods of time waiting for an outcome when in hospital.
"They often sit in silence, without being given the opportunity to communicate their needs. They may not understand how to take their medications correctly, or, be mis-diagnosed because the practitioner doesn't understand them," said Jael.
More concerningly, the extent of neglect of deafblind patients isn't known as there is little research, globally, let alone in Australia.
Madelene Rich from CHARGE Syndrome Australasia said that this negative experience also extends to babies who are deafblind.
"For infants with CHARGE syndrome, their first experience of the world occurs in a neonatal intensive care unit where they can spend weeks or months due to serious medical issues associated with the syndrome," said Madelene.
"Unlike hearing and sighted babies, these infants can't anticipate routines through sight or sound. Procedures, like suctioning and blood tests, can feel like sudden, frightening events and can make their world feel confusing and unpredictable. Deafblind-informed care in NICU, like touch cues, could improve the experience for every infant by making care more predictable, comforting, and developmentally supportive."
Vision Australia Pediatric Speech Pathologist Steve Rose is spearheading its Deafblind service and says that more allied health and medical practitioners with an understanding of dual sensory care are needed.
"There is no one-size-fits-all approach for communicating with someone who is deafblind. As a health care provider, I need to give them the space, time and the resources, such as using certified interpreters, digital guiding technology and assistance animals, to actively communicate their needs."
Usher Kids CEO Emily Shephard echoed this sentiment.
"When people aren't sure how to accommodate deafblind people, I say – just ask. Ask them how they would like to be communicated with," said Emily.
Rodney Baskett from Deafblind Victoria is also deafblind. According to Rodney, people who are deafblind are expected to be passive, rather than actively participating in conversations around their health.
"Many of us don't make a complaint about our experiences in healthcare settings because we find it futile. However, we deserve our stories and experiences to be heard. Through sharing our stories, I hope that it will lead to change," said Rodney.
"I know that hospitals function on efficiency and speed to thrive, but the reality is that someone who is deafblind requires more time to have their support staff present, more time to communicate their needs and more time for the medical practitioner to listen to their needs. Change is needed."
*Senses Australia, 2013
About us:
Able Australia, UsherKids Australia, CHARGE Syndrome Australasia, Vision Australia, Deafblind Australia and Deafblind Victoria are leading service, research and community organisations that cater to the needs of Australians living with deafblindness.
