This project is about improving the education students with intellectual disability get about health and genetic health care in schools.
Students and young people with intellectual disability, their families, their teachers, their school leaders and their siblings have their say about health and genetic health literacy education.
What is the project about?
All students in NSW high schools are meant to learn about genetics in science class.
The GeneEQUAL team heard from adults with intellectual disability that they wished they had learnt more about genetics at school.
But we found out that there was no research done to understand how genetics should be taught at schools for students with intellectual disability.
So we want to change that!
We wanted to hear from students and young people with intellectual disability, their families, their teachers and their school leaders about three main things:
- What were their experiences of teaching or learning about health, health care choices and genetics?
- What makes teaching or learning about health, health care choices and genetics good?
- What makes teaching or learning about health, health care choices and genetics not so good?
What are we doing together?
We talk with students and young people with intellectual disability to find out what they learn about genetics, health and health care choices.
We talk with families about what their child learns and how schools work with them.
We talk with teachers about what subjects they are trained in, what their schools are like, how they teach students about genetics, and how they communicate with parents and families.
We talk with school leaders about how schools decide who teaches this, and what support they need.
We listen to their opinions and ask questions.
So far, we have spoken to 54 people: 15 teachers, 13 students and young people, 13 family members, and 13 school leaders.
Right now, we are talking to siblings of students and young people with intellectual disability.
What have we found so far?
We have found that students and young people, families, teachers and school leaders all have very similar experiences and ideas.
Everyone agrees that students with intellectual disability should learn about health and genetics. Not one person says they should not.
They all want teachers to have accessible classroom resources to help them teach students with intellectual disability.
They recommend that the GeneEQUAL team make different kinds of resources. For example videos, social stories, worksheets that can be changed easily, textbooks written in plain English and manipulatives. Manipulatives are things you can touch and learn with. For example, using pipe cleaners to make DNA or pasta to learn about genetics!
Many people say it would be great if people with intellectual disability helped design resources, and even helped teach alongside doctors and nurses.
They also want teachers to have more training about genetics, intellectual disability and how to teach people with intellectual disability.
They want everyone in the school (parents, students, teachers and leaders) to learn more about disability and why it is important to learn about genetics, health and health care choices.
Students tell us something important: learning about genetics does not make them feel bad or blamed. They want it taught openly and honestly.
Families and school leaders say each school should decide – and write down – who is responsible for teaching health and genetics
Click on each group to download the Easy Read summaries or research report
What is happening now?
We have now heard from teachers, students and young people, families, and school leaders.
Right now, the GeneEQUAL team are listening to the siblings of students and young people with intellectual disability.
Are you interested in being involved in GeneEQUAL Schools?
Our sibling study is still looking for people to take part.
You can read more about it in our GeneEQUAL LinkedIn
You can email geneequal@unsw.edu for more information.
How is this project funded?
The GeneEQUAL Education Project is funded by a grant from UNSW Sydney, the Faculty of Arts, Design and Architecture.