GeneEQUAL Schools: New study for teens and young people with intellectual disability

We want to speak to teens and young people with intellectual disability.

We want to know about what you want to learn about

genetics
health care
health care choices

Many people with intellectual disability have told us

they wish they were taught about genetics and health care choices in schools.
View our research article.

Members from the GeneEQUAL team are doing a study about what teens and young adults (up to 28 years of age) with intellectual disability across Australia want to learn about their health and making informed health care choices.

This is because everything we do at GeneEQUAL centres on what matters most to people with intellectual disability, including young people. Please check out details about our study in the flyer below, contact Jennifer if you want to learn more or know a young person keen to join the study, and share this news with your friends and colleagues.

Download the flyer below.

PDF file, 920 KB

Cover of the Empowering students with intellectual disability flyer

Australian Genomics Education Network Australasia meeting

Emma presented on how co-production is so important in making educational resources about genomics and teaching health care workers.

The meeting was at the Melbourne Convention and Exhibition Centre.

Emma at a lectern in front of an audience

GeneEQUAL invited to speak at the Australian Genomics Summit

Skie, Iva and Emma talked about how we made the GeneEQUAL Educational Toolkit to an international audience of health and genetics experts.

The summit was held at the Melbourne Convention and Exhibition Centre in July.

We were also featured in the post-conference newsletter from Australian Genomics.

Emma, Iva and Skie on stage presenting at the summit

European Society of Human Genetics

The GeneEQUAL team was invited to talk at the European Human Genetics Conference in Glasgow, Scotland from June 10 to 13.

We spoke about the importance of language in genetics and why co-production is so important in genetics education.

A panel of four people talking at the European Human Genetics conference

Third co-production workshop with Self Advocacy Sydney

On the 21^st April 2023, Iva, Manjekah, Julie, Skie and Emma from the GeneEQUAL team met with 15 people with intellectual disability and 5 support people at Self-Advocacy Sydney. They gave us feedback on the GeneEQUAL Educational Toolkit and talked about co-production and why it matters.

Two women present to a room of about 20 people

Julie Loblinzk OAM

The GeneEQUAL team are honoured that UNSW Adjunct Lecturer Julie Loblinzk received the Medal of the Order of Australia (OAM) for her services to people with people with disability in Australia.

Julie Loblinzk holds her OAM certification

Iva, Manjekah, Emma and Julie at Julie's OAM award ceremony

Genetic Counselling Educational Workshop

The GeneEQUAL team were happy to run a half day workshop with genetic counsellors at Randwick. We got great feedback on our Easy Read booklets and videos.

A group of people around a conference table look at a video screen of remote participants

Co-production workshop in Wagga Wagga

On the 12^th December 2022, Iva and Michelle from the GeneEQUAL team went to get feedback on the GeneEQUAL Educational toolkit from people with intellectual disability in Wagga Wagga. 9 people with intellectual disability joined along with 2 support people and staff. The group provided helpful feedback on an Easy Read booklet. They were also very interested in practical information around genetic health care.

Second co-production workshop with SAS

On the 2nd December 2022 our GeneEQUAL team had the second co-production workshop with members and staff from Self-Advocacy Sydney (SAS). We looked through another booklet, aimed at helping people prepare for a genetics clinic visit and also three videos together. We received amazing feedback on these resources which we immediately used to improve them.

Julie Loblinzk presents at a whiteboard to a group of about 20 people in a conference room — Julie Loblinzk presents at the co-production workshop

We also got feedback from the Self-Advocacy team about the workshops themselves and got a thumbs up for inclusivity and respect.

What a great workshop – together we can make a much-needed difference in health care for people with intellectual disabilities!

A man and a woman at a conference table. The man gives a thumbs-up signal. — The workshop got a thumbs up for inclusivity and respect

Three people listening to a speaker at a conference table — Attendees at the workshop

Co-production workshop with Self Advocacy Sydney

On the 28th of October 2022, members of the GeneEQUAL team (Skie, Julie, Iva, Jackie and Emma) travelled to Self Advocacy Sydney’s office in Blacktown for a co-production workshop. We looked together at resources to support people with intellectual disability access and be prepared for clinical genetics appointments in NSW. These resources will also help train health professionals to deliver respectful and equitable care. 

This is part of a project already funded by NSW Health to address key gaps identified in our interviews and focus groups with people with intellectual disability and their support persons. 

In a conference room, a woman writes on a whiteboard and another reads through a paper while three seated people look through documents — Julie Loblinzk OAM runs proceedings at the workshop

The workshop participants were amazingly generous with great feedback. We are so grateful for their time and enthusiasm for the project. As one participant said: “What you are doing makes a big difference”. 

We are so proud to work with SAS as partners on our research.  Thank you to all the workshop participants and the SAS team. 