Six leading Deafblind service, advocacy and community organisations have joined forces to call for a standardised level of healthcare for Deafblind patients.
As part of Deafblind Awareness Week, members and representatives of the organisations are sharing stories of medical neglect as they urge authorities to implement a single standard of care in Australia for people with dual sensory disabilities in health settings.
“Simply not OK”
Members and representatives sat at the top of the steps at Parliament House in Victoria and ‘yarn-bombed’ the MPs in an effort to engage them in conversation about this vital topic.
Able Australia CEO Lynette McKeown said 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 McKeown.
She said dual sensory loss leads to higher rates of hospitalisation, poorer health outcomes, more encounters with the healthcare system 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,” she said.
Deafblind patients left waiting
Jael Espinal is Deafblind and a representative for Deafblind Australia. She said 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.”
But the extent of neglect Deafblind patients face isn’t known because 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, whose first experiences in this world take place in the neonatal intensive care unit due to medical issues associated with deafblindness.
“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,” she said.
Better understanding is vital
Vision Australia pediatric speech pathologist Steve Rose said 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.”
It’s a sentiment shared by Usher Kids CEO Emily Shephard.
“When people aren’t sure how to accommodate deafblind people, I say – just ask. Ask them how they would like to be communicated with,” Shephard said.
Rodney Baskett from Deafblind Victoria, who is also Deafblind, said many Deafblind people who have barriers, discrimination and inadequate healthcare don’t complain because they believe it’s not worth it.
But he said their stories deserve to be heard.
“Through sharing our stories, I hope that it will lead to change,” he said.
“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.”