Beck, Greg and Ray from our Learn and Lead Group spoke at the VALiD Having a Say conference 2025.

They said what they think needs to be done to make healthcare better for people with intellectual disability.

Here is what they said.

Beck

Things that I would like to see changed in health services are

• People with intellectual disability to be involved in training that doctors and nurses get in university. To work beside them to help train them about disability
   
• Doctors and nurses need to talk directly to us instead of our carers or support worker or family
   
• Have things explained to us in Plain English
   
• Have the option to choose who we see in the health system
   
• Have a trained disability liaison nurse in regional hospitals across Australia
   

Greg

I believe two of the most important changes that need to be made are better communication and accessibility.

For better communication

• Make eye contact
   
• Speak directly to the person
   
• Offer Easy Read information
   
• Use simple and clear language

To improve accessibility

• Develop platforms which people with a disability can access independently
   
• Give people with a disability greater choice and overall control of their health care needs
   

Ray

I want healthcare staff to do better at communicating with people with disability.

This includes

• Taking the time to further explain something
   
• Providing information and resources that are easy to understand
   
• Knowing how to communicate with people who use different ways of communicating
   
• Talking straight to us, not ignoring us and talking to our support people unless we ask for them to be included
   
• Being respectful and not treating us like we are dumb or can't understand.

I would also like to see better consent.

This means I get to say yes or no about choices about my body and health.

To give your consent you need to be able to understand the information given to you, have time to process and understand it and not be pressured by anybody.

Consent in healthcare can be choosing who you see, understanding medication and side effects, understanding treatment options and how tests performed, understanding your rights and people asking before touching you.

We have the right to make positive or negative choices about our health just like anybody else.

About the speakers

Beck, Greg and Ray are passionate about improving healthcare.

They are members of our Learn and Lead Group.

The Group is an important way people with intellectual disability contribute to the Centre. 

The Group helps us make sure the Centre is working in an inclusive way, and that people with intellectual disability have a say about the future of health care.

Find out more about the Having a Say conference