Australasian CHARGE Syndrome Conference 2024

Novotel Sydney Olympic Park, 23 - 25 August, 2024

Overview

The theme for the conference is Creating connections and peer learning: building capacity in our community. The purpose is to build capacity in people with CHARGE syndrome (and their families and carers) to achieve their goals, to strengthen communities and develop future leaders. This will be done through peer-to-peer activities and sharing of information by members of our community (lived experience), as well as local and international health care professionals.

The goal is that people with CHARGE syndrome and their families and carers, will have increased skills and knowledge:

• about disability rights and self-advocacy

• to socially connect and develop meaningful relationships

• to navigate and connect with services and supports they need

• to enable greater independence

• to make their own decisions, participate, lead and contribute in the community.

The conference program is well under way with many topics and speakers confirmed. We have asked people with CHARGE syndrome and their families what topics they want to learn about, and these requests have informed the program to make it truly co-designed.

Speakers

We have a mix of local and international health care professionals and service providers presenting.

Streams

There will be conference sessions for all attendees together (plenary), as well as streams, tailored to specific audience groups: Parents of young children; parents of adolescents and parents of adult children. You will be able to attend any of the streams and you will be able to jump between streams to see presentations that are relevant for you.

Program for adults with CHARGE syndrome

We have been working with adults with CHARGE syndrome and Dr Kasee Stratton-Gadke to design a program for this group. Dr Kasee Stratton-Gadke will facilitate a program that covers topics including protecting yourself online and managing social media, positive mental health, self advocacy and future planning.

Something for everyone

We know that in order for parents to attend, there needs to be an alternative program that caters to the needs of children. And why should they miss out? Their conference experience is important too. What a great opportunity, while the children are together, to participate in group therapy or skill and connection building activities.

We are designing programs for children with CHARGE syndrome, siblings and for adults with CHARGE syndrome who might want an alternative to the adults program. The aim is that for those with funding, the program cost can be claimed.

Accessibility

Live captioning and platform interpreters (Auslan) will be provided for all conference sessions. If platform interpreters are not accessible for you, you may provide your own interpreters.

Using your funding

The conference program aims to provide capacity building skills, knowledge and confidence to families and carers as they navigate disability and health and advocate for their needs in the community. The program for adults with CHARGE syndrome aims to provide capacity building skills, peer connections, and mentoring. You may be able to use funding for your registration.

Australian funding scheme (NDIS)

Participants of the NDIS (Australia) may be able to use these categories against their goals:

• Parents: Training For Carers/Parents (15_038_0117_1_3)

• Siblings: Training For Carers/Parents (15_038_0117_1_3)

• A person with CHARGE syndrome: 

• Individual Social Skills Development (11_024_0117_7_3)

• Community Engagement Assistance (15_045_0128_1_3)

• Life Transition Planning incl. Mentoring, Peer-Support & Individual Skill Development (09_006_0106_6_3) 

For support workers to support activities: use your normal support worker funding arrangements and NDIS Support Items (e.g. Assistance with Self Care; Assistance to Access Community, Social and Recreational Activities)

Suggested plan goal

“Improve the quality of my care and support by increasing understanding of my disability impacts and support needs, and sustaining my informal supports.”

Contact your LAC, Support Coordinator or NDIS Planner to see if there are adequate funds in your plan to cover the cost.