Support officer

One-to-one support and NDIS information

With Tracey Johnston

Navigating life with CHARGE syndrome can feel overwhelming at times — the appointments, the information, the decision-making and the constant need to advocate can be a heavy load. Having someone who understands the complexity of CHARGE and can walk alongside you makes a real difference.

Our Project Officer, Tracey Johnston, can help connect you with the information, resources and supports that make the journey easier, including:

• current best-practice information and resources on CHARGE syndrome.

• NDIS planning support, such as preparing for a plan review, requesting additional supports or funding, or writing a carer statement

• connection to other parents or adults living with CHARGE syndrome

• 1:1 emotional support as you navigate the feelings that come with this journey

• links to services and supports such as counselling, carer support programs, peer groups and other relevant community services.

About Tracey

Tracey is an Early Intervention Teacher of the Deaf with 20 years or more, experience working with children and adults who have low vision and/or hard of hearing. She brings extensive experience around navigating complex disability systems including the NDIS. Tracey is a Case Coordinator with Usher Kids and was previously Clinical Lead at NextSense.

About the service

When you reach out to CHARGE Syndrome Australia, our Project Officer will listen to your enquiry, learn what you need, and help connect you with the right information, resources and supports. Our Project Officer does not provide clinical, legal or advocacy representation but can help you understand options across systems like the NDIS, health, education and community supports.

Your enquiry is given an ID number (not your name), and a brief summary of your situation is documented so we can provide accurate support and follow‑up. If your enquiry is urgent, we respond within 24 hours; all other enquiries are followed up within two weeks.

We only collect the details needed to respond to your enquiry, and all information is stored securely and handled with strict privacy and confidentiality. You’ll be asked for consent before any information is recorded.

How to access this service

To arrange an appointment with Tracey, contact admin@chargesyndrome.org.au and someone from our team will be in touch within 48 hours.

Thanks to Deafblind Information Australia and Federal Government's Information, Advice and Referrals funding stream that funds this role.