Emerge Australia will be making an organisational submission to the Federal Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability.

We have created two short surveys to help us to develop a submission that is representative of people’s experiences of living with ME/CFS, and that of their carers, across Australia.

The surveys will be available until 31 March 2020. If you live with ME/CFS or care for someone with ME/CFS, and have the energy to do so, we would greatly appreciate you taking the time to participate. The first survey is interested in experiences of people living with ME/CFS (and can also be completed by carers on their behalf) and the second is for carers to reflect on their own experience.

The Disability Royal Commission is also encouraging people to make their own individual submissions. There is more information about the Royal Commission and submission process below.

What is the Disability Royal Commission?

Emerge Australia is preparing an organisational submission for the Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability. The Disability Royal Commission was established by the Australian Government in 2019 and will run for three years to 2022.

The inquiry will provide recommendations to government on how to:

  • prevent and better protect people with disability from all forms of violence and abuse, neglect and exploitation
  • achieve best practice reporting and investigation processes
  • 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 Royal Commission is accepting submissions from individuals and organisations on any of these topics. Submissions can relate to experiences with government, institutions and support services, and community.

Emerge Australia’s submission to the Royal Commission

A submission to the Royal Commission is an opportunity to highlight negative encounters that some people living with ME/CFS in Australia have had when interacting with government institutions, medical and other support services, and community. The Royal Commission is also an avenue to advocate for increased understanding of and improved treatment of the condition. Emerge Australia will therefore be making an organisational submission on behalf of people in Australia living with ME/CFS.

Emerge Australia has identified the categories of ‘violence and abuse’ and ‘neglect’ as most related to the experiences of people living with ME/CFS, and will therefore be focusing on these two areas in the submission. For people living with ME/CFS, experiences of ‘violence and abuse’ may include undergoing forced treatments, and ‘neglect’ may include an inability to access appropriate services and supports. The Royal Commission’s definition of terms are detailed below.

Emerge Australia acknowledges that carers of people living with ME/CFS can also experience ‘violence and abuse’ and ‘neglect’ when carrying out this role. This can include exclusion from attending medical appointments to support the person you provide care for or inability to access your own support services such as mental health services or Carer allowance.

How you can assist us to develop our submission

Emerge Australia is conducting two short surveys to assist us in representing the experiences of people living with ME/CFS, and their carers, across Australia.

The first survey is interested in the experience of people living with ME/CFS. Carers are also welcome to take this survey on behalf of people that they care for. A second survey has been developed specifically to capture the experiences of carers who have experienced violence, abuse or neglect themselves. We estimate that each survey will take 10-20 minutes to complete, but it could take considerably longer depending on how much detail you provide and on your level of disability.

Emerge Australia is greatly appreciative of anyone who takes part in this survey, however please be aware that participating could be distressing as you will be asked to recall experiences of violence, abuse and neglect. Please do not feel obligated to participate and be aware that if you begin the survey you are able to stop at any time.

If you wish to take part, the survey for experiences of people living with ME/CFS is here and the survey for carer experiences is here. Please participate in the survey/s most relevant to you.

Emerge Australia will also be drawing on information from other sources, such as findings from the 2019 Health and Wellbeing survey, to develop our submission.

Individual submissions

The Royal Commission also welcomes individual submissions. While Emerge Australia does not have the capacity to provide one-on-one support for individual submissions, we will be producing a simple how-to guide to assist you to do this on your own. Disability advocacy organisations around Australia have also been funded by the Royal Commission to support people who wish to submit an individual submission. You can find your closest advocacy service at the Disability Advocacy Finder or contact the Royal Commission on 1800 517 199.

Support for participation

Emerge Australia unfortunately is not able to offer counselling support to people who participate in our survey or who are impacted by the Disability Royal Commission process. The Department of Social Services has launched a national, free counselling and referral service for people affected by the Disability Royal Commission. This service operates through the Blue Knot Foundation 9am-6pm AEST weekdays and 9am-5pm AEST weekends on 1800 421 468 or 02 6146 1468. Blue Knot also provide webchat and text message options which is accessible via their website.

Definition of terms

The Royal Commission defines ‘violence and abuse’ as including assault, sexual assault, constraints, restrictive practices (physical and chemical), forced treatments, forced interventions, humiliation and harassment, financial and economic abuse and significant violations of privacy and dignity on a systemic or individual basis.

The Royal Commission defines ‘neglect’ as including physical and emotional neglect, passive neglect and wilful deprivation. Neglect can be a single significant incident or a systemic issue that involves depriving a person with disability of the basic necessities of life such as food, drink, shelter, access, mobility, clothing, education, medical care and treatment.

The Royal Commission defines ‘exploitation’ as the improper use of another person or the improper use of or withholding of another person’s assets, labour, employment or resources including taking physical, sexual, financial or economic advantage. Please note that Emerge Australia does not intend to focus on ‘exploitation’ in our group submission. Further information about the Royal Commission is here.