Publication: The need for co-healthcare with people with intellectual disability

We are excited to share our new research article.

It was published in a medical magazine.

It is about how health care workers do not always give good health care to people with intellectual disability.

We think that health care workers need to learn how to give good health care. 

We think that people with intellectual disability should help teach health care workers.

We hope this will make health care more

  • inclusive,
  • person-centred and
  • respectful.  

Click the link to read our article The need for co-educators to drive a new model of inclusive, person-centred and respectful co-healthcare with people with intellectual disability

Download our Easy Read article here

PDF file

Report: The GeneEQUAL Toolkit Final Report

This booklet is about the GeneEQUAL Toolkit and what

  • people with intellectual disability
  • health care workers

think about it.

This booklet is also about what people say

  • GeneEQUAL should work on next

You can find out more on the Centre for Genetics Education Website

Please click the link below to the PDF

PDF file

Publication: Health care choices for people with intellectual disability

We are excited to share our new research article.

It is about informed consent for health care.

Informed consent means having information to make health care choices.

Our article was published in a medical magazine.

We hope lots of health care workers read it.

We think people with intellectual disability must get

  • the right information
  • support 

with health care choices.

This article tells us we need to do 

  • more work to improve health care choices

Here is the link to the article

Equitable and accessible informed healthcare consent process for people with intellectual disability: a systematic literature review

Click here for the Easy Read version

PDF file

GeneEQUAL toolkit

The GeneEQUAL team has made a toolkit for health professionals.

This includes advice on how to do health care that is

  • respectful
  • inclusive and
  • accessible.

The Educational Package was co-designed with people with intellectual disability and health professionals.

It includes  

  1. Advice for health professionals on the Centre for Genetics Education website.
  1. Information on how we made the toolkit.
  1. Our health videos – which show how to do good health care.
  1. Our Easy Read genetics booklets.

Please have a look and share with your health professionals.  

If you are a health professional, please let us know what you think by doing our short survey.

Anyone can also let us know what they think.

Download the full toolkit here

PDF file

Teenager sitting on couch with poodle and using a laptop

Our Easy Read Health Booklets

GeneEQUAL co-produced Easy Read booklets  

  • with people with intellectual disability.  

There are 6 booklets 

  1. About genetic health care 
  2. Genes and genetic conditions   
  3. How to make a genetics appointment  
  4. Get ready to go to the genetic clinic  
  5. Tips about genetic health care
  6. What is research? 

We hope they will help people  

  • learn more about genetic health care 
  • decide if they want to go to a genetic clinic  

You can download the booklets for free by clicking each link.  

If you want us to send you a booklet in the post let us know

You can find our contact details on our Connect page.

Please share with health professionals you know. Please also ask them to do this quick survey.

You can also let the GeneEQUAL team know what you think.

Cover of booklet 1, called About Genetic Health Care

About genetic health care

This booklet explains what genetic health care is.

Cover of booklet 2, called Genes and Genetic Conditions

Genes and genetic conditions

This booklet explains what genes and genetic conditions are and can be used as part of genetic counselling.

Cover of booklet 3, called Making a Genetic Appointment

Making a genetic appointment

This booklet is designed to help people with intellectual disability and their support people make a genetic clinic appointment.

Cover of booklet 4, called Get Ready to Go to The Genetic Clinic

Get ready to go to the genetic clinic

This booklet can be shared with a person with intellectual disability before a clinic appointment. It has space for including details of the appointment.

Cover of booklet 5, called Tips About Genetic Health Care

Tips about genetic health care

This booklet provides information about genetic clinics, including advice on the difference between public and private clinics and healthcare rights.

Cover of Easy Read flyer called What is Research?

What is research?

This booklet explains what research means.

“I am not a number!” Opinions and preferences of people with intellectual disability about genetic healthcare

Published January 20 2023 in European Journal of Human Genetics

Authors: Iva Strnadová, Julie Loblinzk, Jackie Leach Scully, Joanne Danker, Michelle Tso, Karen-Maia Jackaman, Manjekah Dunn, Sierra Angelina Willow, Skie Sarfaraz, Vanessa Fitzgerald, Jackie Boyle and Elizabeth Emma Palmer

The GeneEQUAL team share how people with intellectual disability have experienced genetic health care. They suggest some ways to make genetic health care better.

The paper is on a website that is seen by health professionals all over the world!

“I am not a number!” Article

Read the Easy Read version here

PDF file

Easy Read Report: GeneEQUAL study

This is the Easy Read Report of the GeneEQUAL study findings.  

It shares:

  • what the GeneEQUAL project is 
  • what people told us 
  • and what we recommend.

The study was funded by NSW Ministry of Health.

PDF file, 2.4Mb

Cover of the GeneEQUAL study findings.