Table of Contents
Terms of Reference
The terms of reference are broad. The Royal Commission will focus upon issues such as violence, abuse, neglect and exploitation of people with a disability, however the scope of this inquiry is wide-ranging. The Royal Commission will also consider services and supports, needs, and the roles of those who interact with people with a disability.
For people living with ME/CFS, and those who care for them, this inquiry is wide enough to include most of the issues that we face.
If an experience has felt harmful or discriminatory to you, then it will be relevant to this Royal Commission.
Issues you might like to talk about
Here are some ideas for topics that might be important or relevant to you. It is not a comprehensive list; it is only some examples.
The examples have been grouped into three categories.
- Access to safety nets and issues
- Access to medical and other services free of issues
- Protection from family, friends and carers where issues arise
Access to safety nets and issues
| Housing | lack of access or denial of access to affordable housing in a timely manner |
| housing that is mould, chemical and/or odour affected | |
| is denied due to the condition or false belief about the condition | |
| Disability Support Pension and National Disability Insurance Scheme | lack of access or denial of access |
| being required to undertake treatments that are not and cannot result in substantial improvement of the condition | |
| being required to undertake activity of treatment that can potentially cause deterioration | |
| being subject to biased policy designed to deny access to the benefits | |
| being denied access to benefits suited to the condition; being denied because of the condition or false belief about the condition | |
| being subject to paperwork requirements beyond capabilities | |
| Insurance | lack of access or denial of access to insurance, including Total and Permanent Disablement, Income Protection, Mortgage Protection, Credit Card Protect, Superannuation insurances, etc. |
| Education | university extensions or deferrals |
| alternatives such as online or distance education | |
| Reasonable accommodations under the Disability Discrimination Act | denial of access to reasonable accommodations under the Disability Discrimination Act suited to the condition, so that we can participate in employment, education, and other activities |
| being subject to discriminatory behaviour, comments, or actions because of the condition | |
| being denied accommodation because of false beliefs about the condition |
Access to medical and other services free of issues
| Abuse | being subject to derogatory, dismissive, discriminatory, humiliating, abusive comments or behaviour |
| being subject to violent conduct or other physical or verbal abuse | |
| Access | being unable to access medical or other assistance because of exclusion, being ignored, turned away or otherwise denied access |
| being unable to afford access | |
| being geographically isolated from medical or other treatment | |
| being unable to access treatment due to being otherwise unable to attend medical or other assistance | |
| being unable to obtain essential, appropriate and accurate medical reports to assist with key requirements (eg insurance claims, Centrelink, NDIS, sick leave, referrals) | |
| Abuse via loss of autonomy | being removed from parental control and subject to institutionalisation against your will |
| misdiagnosed with psychiatric attributions | |
| subject to a mental health order | |
| subject to treatment that causes harm whilst institutionalised | |
| forced to undertake activities detrimental to the condition | |
| being subject to psychiatric mistreatment | |
| misattribution or institutionalisation | |
| being subject to medication that is inappropriate, harmful, and/or against your will | |
| Medical | being subject to inappropriate treatment because of a lack of funding of quality research, lack of quality education of medical and other professionals, lack of support from the Medicare System, lack of knowledgeable practitioners |
| being subject to waiting rooms or other environments that adversely impact your condition (eg bright lights, smells, inappropriate seating, extended waiting periods, etc) | |
| being taken advantage of because of the condition; being detrimentally impacted by inappropriate treatment, medication, supplement or management; being promised cures or other benefits |
Protection from family, friends and carers where issues arise
| Abuse | being subject to derogatory, dismissive, discriminatory, humiliating, abusive comments or behaviour |
| being subject to violent conduct or other physical or verbal abuse | |
| Rights | being subject to restrictions or denial of care and/or assistance |
| Support | being unable to reach out to, or obtain assistance to remove you from a situation, or ensure that you are protected |
Information is accurate as at 21 May 2021
Go back to:
How Can You Participate?
Up next:
How to Approach Your Submission
Other pages in this guide
- Disability Royal Commission Guide for People with ME/CFS
- About the Royal Commission
- Is ME/CFS a disability?
- Participating in the Royal Commission
- Who Can Help You Participate?
- How Can You Participate?
- Issues to Talk About (you are here)
- How to Approach Your Submission
- Royal Commission Key Questions
- Sample Submission: Person with ME/CFS
- External Resources