Disability Royal Commission

The Royal Commission into Violence, Abuse, Neglect and Exploitation (‘VANE’) of People with Disability (Disability Royal Commission) was established on 4 April 2019 by the Federal Government of Australia.

Regrettably people with ME/CFS, their carers, family members and others within their proximity are the subject of VANE, inside their own home, and within the community.

ME/CFS Australia recognises the importance of having our voice heard in this Royal Commission, so that we can bring to the fore, the specific issues that we face. The purpose of the Royal Commission is to gather stories, such as our own, in order to help inform Australian governments, institutions and the wider community on how to prevent, and better protect, people with disability from experiencing VANE in the future.

What is the Disability Royal Commission about?

In April 2019 the Australian Government announced that it would initiate the Royal Commission in Violence, Abuse, Neglect and Exploitation of People with Disability. In late 2019, the Commission held its first hearings, commencing its three year investigation into the issues impacting people with a disability.  Such issues extend across a broad spectrum of issues arising from interactions with government, institutions and the community. 

The object of the Commission is to learn about the issues and maker recommendations for change, including:

  • “prevent, and better protect, people with disability from experiencing violence, abuse, neglect and exploitation”; 
  • “achieve best practice in reporting and investigating of, and responding to violence, abuse, neglect and exploitation”
  • “promote a more inclusive society that supports the independence of people with disability and their right to live free from violence, abuse, neglect and exploitation.”

The outcomes for people living with ME/CFS could be significant.

In October 2020, the Commission released its first Interim Report which set out the work carried out in its first 15 months.

The Royal Commission was scheduled to provide their final report in April 2022. With Covid-19 and the delay in the Government’s enactment of privacy guarantees, the Commission will now deliver a final report to the Australian Government by 29 September 2023.  Submissions can be made before that date, however we urge them to be made sooner to ensure they are considered.

How does this concern people with ME/CFS?

The scope of the Royal Commission’s ‘Terms of Reference‘ are quite broad. This means that it will examine issues that impact people across a variety of settings – including the actions of carers, medical professionals, hospitals, housing providers, Centrelink, the NDIS, insurance companies, schools and universities.

As a person living with ME/CFS, or a family member or carer, you know well the experience of ME/CFS. We all understand the vulnerabilities that occur.   

  • There is neglect.   
  • There is abuse.   
  • There is violence in all its forms.   
  • There is exploitation. 

These issues come from all corners of society. They can occur inside our homes and they can occur in a variety of interactions outside our homes. 

ME/CFS is one of the most heavily stigmatised conditions within the medical world. For ME/CFS people, this is an extraordinary opportunity to expose the harms done to us and put forth our solutions for the problems. For people with ME/CFS these are the issues that are the result of low research, poor quality research, misconceptions and, unfortunately, self-interest.    

Our voices have been stifled for a long time. For people with ME/CFS, this inquiry is for and about you.

Guide for people with ME/CFS

ME/CFS Australia have put together an ME/CFS specific guide containing information to assist you to understand how to make your submission, the various options to make your submission, how to obtain assistance, and help you understand the issues you might like to cover.

The guide tells you:

  • what the Royal Commission is all about;
  • why you should participate; 
  • how you can participate;
  • who can assist you;
  • where you can find the relevant information;
  • the key topic areas that ME/CFS Australia believe most people will have experienced issues;
  • the questions that the Commission wants you to address.

ME/CFS Australia is focused on empowering you to participate and have a voice. As and when new options to participate come forward, we will let you know.   

You can read our Royal Commission guide here.

ME/CFS Australia hopes that you find this guide of assistance, and encourage you to contribute your stories across as many issues as you are able, no matter how small. Every story counts.

What can you do?

Making a submission to the Royal Commission is important.

No one knows the true breadth of the issues that exist like you and those around you do. It is our view that it would be hubris for us as the national peak body to believe that we could fully encapsulate the variety of experiences and issues that are experienced. Your individual voices in the numbers are far more significant and important.

Our goal is therefore threefold:

  1. To encourage every person with ME/CFS to provide a submission to the Royal Commission – even if it is a bare bones submission on a single topic;
  2. To encourage every carer, every family member and every friend of a person with ME/CFS to use their capacity to assist people with ME/CFS to make their submissions, and to step forward and share their own experiences;
  3. To encourage the ME/CFS community to use its strength in numbers to make the Royal Commission well aware that we as a collective group are experiencing extraordinary issues because of the condition and the beliefs, attitudes, neglect and policies that have facilitated this environment.


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