Advocates call for better care in hospital & healthcare settings for deafblind Australians

For many babies born deafblind, life begins not with lullabies or gentle faces, but with weeks or months in neonatal intensive care – unable to hear voices or see what’s coming next.

“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 Rich from CHARGE Syndrome Australasia.

“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.”

This week, during Deafblind Awareness Week (23–29 June), organisations across Australia are calling for a national standard of care for deafblind patients – starting from the very beginning of life, and continuing through every stage.

Despite the complexity of deafblindness, there’s no standardised approach to care in Australian hospitals and healthcare settings. And according to the people living it, the consequences are serious.

“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 Able Australia CEO Lynette McKeown.

“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, a representative for Deafblind Australia, says this neglect continues well beyond infancy.

“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.

While deafblindness affects more than 100,000 Australians, the scale of the problem in medical settings remains largely undocumented. Globally, research on healthcare outcomes for deafblind people is limited—and in Australia, it’s even more sparse.

Still, those working in the field see the gaps clearly.

“There is no one-size-fits-all approach for communicating with someone who is deafblind,” said Steve Rose, paediatric speech pathologist at Vision Australia. “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.”

Sometimes, though, the first step is the simplest.

“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 Usher Kids CEO Emily Shephard.

Rodney Baskett from Deafblind Victoria says deafblind people are often sidelined in decisions about their own care—and many feel there’s no point raising concerns.

“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.”

The call for a national standard of care is being led by Able Australia, Deafblind Australia, CHARGE Syndrome Australasia, Vision Australia, UsherKids Australia and Deafblind Victoria.