Disability and Me

Do you know:

• your health care rights rights in Australia?

• That we have Australian Charter of Health Care Rights?

A charter of rights is

• a list of all the human rights
  • the country thinks that are important
  • for everyone

What does the Australian Charter of Rights do?

• It says the rights for both
  • patients
  • carers of patients
  • it explains what health care needs to be like

It covers

• all people in Australia
• all places in Australia
• public hospitals
• day procedure services
• general practices
• other community health services

So what are your health care rights?

Access – I have a right to:

• health care and treatments
• that meet my need

Safety – I have a right to:

• get safe and high quality health care
• in a setting that makes me feel safe

Respect – I have a right to:

• Be treated with respect
• have my culture, identity, beliefs and choices recognised.

Partnership – I have a right to:

• ask questions
• be included in honest communication
• make decisions with my health care staff
• include the people I want in planning and decisions

Information – I have a right to:

• clear information about my condition
• information about services, waiting times and costs

I have a right to be given help to:

• help me to understand my health
• be told if something has gone wrong

Privacy – I have a right to:

• have my privacy respected
• have information kept safe and confidential

You can find the Easy Read Charter on this link:

https://www.safetyandquality.gov.au/sites/default/files/2019-08/charter-of-healthcare-rights-easy-english-web-accessible-version-july-2019.pdf

We are working on a GeneEQUAL project

• you can read about it in our other blogs

In GeneEQUAL we learn about

• experiences of people with intellectual disabilities
• with health care

Here is what we heard

• about health care rights in Australia

Health care workers sometimes

• do not speak directly to a person with an intellectual disability
• do not spend enough time to get to know the patient
• rush appointments
• use negative language about disability
• do not know that people have often had trauma

What needs to happen?

Health care workers need to

• use positive words about disability
• for example ‘condition’ is better than ‘disorder’
• explain things in simple words and pictures
• use Easy Read when explaining things

• talk slowly
• know different ways to communicate
• have more ongoing professional training – to support people with intellectual disabilities the best way

This will help to make the Charter reality!

You can learn about the Charter here:

https://www.safetyandquality.gov.au/consumers/working-your-healthcare-provider/australian-charter-healthcare-rights

Write to us if you want to know more about our work

julie@sasinc.com.au

i.strnadova@unsw.edu.au

Hello everyone

We hope you have all been well during these difficult COVID-19 times.

We would like to tell you about our new project. It’s called GeneEQUAL.

We need to listen to people to intellectual disability so that we can make their health care better.

Doctors need to know how to make people with genetic conditions feel safe and respected

This project will show us how we can make genetic health care better.

We want to learn about what people with intellectual disabilities think about:

Genetic counselling

Genetic counselling means talking about why people have a health or learning difficulty.

Gene testing

Gene testing means a blood or spit test to help find out why people have a health or learning difficulty.

We are conducting this research with Dr Emma Palmer

And Professor Jackie Leach Scully from the University of New South Wales.

Mrs Jackie Boyle from New South Wales Health.

And Suzanne Nevin from UNSW and Sydney Children’s Hospital.

Please let other people know aobut this study

You can call Iva on 0426 959 172

Or email us at

i.strnadova@unsw.edu.au