In recognition of National Deafblind Awareness Week (23-29 June) and International Day of Deafblindness (27 June), CHARGE Syndrome Australasia was part of a powerful collaboration in Victoria, that aimed to bring colour, connection, and critical issues for deafblind people globally, into the spotlight.

On 19 June, alongside fellow advocates from Able Australia, Deafblind Victoria, UsherKids Australia, Vision Australia, and Deafblind Australia, we led a yarn bombing activation on the steps of the Parliament of Victoria. The goal: to raise awareness of the urgent need for standardised, deafblind-informed healthcare practices across Australia.

Yarn bombing is a sensory art form — using texture, colour, and community spirit to convey powerful messages in public spaces. For people with deafblindness, it’s a fitting metaphor: vibrant and connective, yet too often invisible in decision-making spaces.

Dual sensory loss, or deafblindness, is linked with:

• Higher rates of hospitalisation

• Fragmented communication in medical care

• Poorer health outcomes

• Lack of informed treatment options

For many infants with CHARGE syndrome, their first experience of the world is in a neonatal intensive care unit (NICU), where they may stay for weeks or even months. Unlike hearing and sighted babies, they can’t rely on sound or vision to understand what’s happening around them. Deafblind-informed care — such as using consistent touch cues — could improve the experience for all babies in NICU.

While CHARGE syndrome is a leading cause of congenital deafblindness, it’s just one part of a much broader picture. Many people live with acquired or syndromic deafblindness — each with their own unique experiences and challenges. Currently, no standard of care exists in Australia for people with dual sensory disabilities.

During the event, we were honoured to be joined by several State members of Parliament who embraced the initiative with heartfelt support:

• Tim Richardson (Parliamentary Secretary to the Premier)

• Nathan Lambert (Parliamentary Secretary for Children)

• Shaun Leane (Legislative Council)

• The Hon Sonya Kilkenny (Attorney-General, Planning Minister)

• The Hon Mary-Anne Thomas (Health Minister)

• Melissa Horne (Health Infrastructure Minister)

• Will Fowles (Environment and Planning Committee)

Mr Shaun Leane proudly wore his yarnbomb scarf in Parliament, while Mr Nathan Lambert not only wore his yarnbomb vest but also recognised International Day of Deafblindness and the advocacy of CHARGE Syndrome Australasia during a Parliamentary session.

This show of support is vital — but action must follow

We call on all healthcare providers, medical practitioners, and allied health professionals to adopt deafblind-informed care principles:

• Communicate in accessible ways

• Allow time for support staff and interpretation

• Make use of assistive technologies and tactile methods

• Respect each person’s unique needs and autonomy

This Victorian led movement is gaining momentum, with coverage in Health Practitioner Australia, MiVision Ophthalmic Journal, and Pharmacy Daily — but there is still work to do.

Deafblind people around the world deserve to be seen, heard, and understood — especially in healthcare. CHARGE Syndrome Australasia is calling for a standardised level of care in Australia and New Zealand to ensure equity, safety, and dignity for all individuals with deafblindness.