Rights of carers

A carer is someone who helps and supports a person through a disability or illness. Carers have a vital but often demanding role providing physical and emotional support to people with cancer.

This section sets out your rights as a carer in dealing with the treatment team, and making medical and financial decisions. It also covers your rights at work and the types of support you can access.

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Talking to the treatment team

One of your key roles as a carer will be to help the person you care for communicate with their treatment team and make decisions about their care. The person needs to provide their written consent to allow you to do this, and this consent should be included in their medical record.

At times, you may also need to be an advocate for the patient. It is your right to take on this role if that is what they would like.

Tips for medical appointments

  • Prepare for appointments by talking with the person you care for and making a list of questions to ask the doctor.
  • Call the receptionist to check what you have to take, such as test results or scans.
  • Take a list of any medicines and doses that the person is taking.
  • Keep a diary of the person’s health issues or symptoms, or help them to keep their own diary.

Making decisions

The person you care for may give you the power to act on their behalf.

Financial matters – Usually called an enduring power of attorney.

Medical decisions – As a carer, you may be appointed by the patient or asked by the treatment team to make medical decisions for the person with cancer if they lose capacity. While this is called different things in different states and territories, it is often called a power of guardianship or an enduring guardian. 

If the person you are caring for becomes incapable of making their own decisions and has not given you the power to make decisions on their behalf, the medical practitioner can approach the substitute decision-maker.

Rights of same-sex partners

The law recognises the role of same-sex partners in medical decision-making. Sometimes, medical staff may not be fully aware of this and they may seek a decision from another member of the patient’s family before approaching the person’s domestic partner.

To ensure your rights as the domestic partner are protected, you may want to speak to the treating doctor to confirm that you are the Person Responsible for medical decisions.

If you or your partner have any concerns about you being recognised as the decision-maker, consider asking your partner to appoint you as their enduring guardian, or enduring power of attorney (when they still have capacity).


Workplace issues for carers

This section provides a snapshot of some of the issues faced by working carers. 

Carer’s leave

Full-time employees except casuals – entitled to receive 10 days of paid personal leave each year, which includes sick leave and carer’s leave.

Part-time employees – receive entitlements on a pro rata basis.

In addition, full-time and part-time employees are entitled to two days of paid compassionate or bereavement leave when an immediate family member is seriously injured or dies. Casuals are not paid for this type of leave.

All employees, including casuals, are also entitled to two days of unpaid carer’s leave per year, or more time if their employer agrees. This unpaid leave can be used when the employee has used up their paid personal leave.

For more information about carer’s leave, visit fairwork.gov.au and search for ‘sick and carer’s leave’.

Discrimination

Discrimination at work because of your caring responsibilities is against the law and is prohibited under the Disability Discrimination Act and the Fair Work Act.

Your caring responsibilities cannot be held against you when you are applying for a job. You also have the right to the same opportunities for promotion, transfer or training and to the same benefits as other employees.

Special arrangements

Your employer may need to make arrangements to help you manage your work and caring responsibilities.

 Some examples of flexible arrangements are:

  • allowing you to work from home some or all days
  • changing your start, finish or break times
  • allowing you to vary your hours, work part-time or job share
  • varying the amount of unpaid or paid leave you can take and when you can take it.

They can only refuse to provide these arrangements if the changes would cause serious hardship to their business.

Making a complaint

If you feel you have been discriminated against because of your caring responsibilities, you may have the right to make a complaint.

  • Australian Human Rights Commission (humanrights.gov.au)
  • Fair Work Commission (fwc.gov.au)
  • Human rights, equal opportunity or anti-discrimination agency in your state or territory.
Read more workplace issues for carers

Financial assistance for carers

Caring for someone with cancer can cause financial difficulties. The Department of Human Services supports carers with a range of payments via Centrelink. 

  • Carer payment – for carers who provide full-time assistance in the home of the person with with cancer. It is subject to income and assets tests.
  • Carer allowance – for carers who provide a significant amount of assistance, either in their own home or in the home of the sick person. The allowance is not income and assets tested. You may be eligible if you are working or receiving another type of benefit.
  • Carer supplement – for people who receive the Carer Payment, Carer Allowance or other benefits. It is automatically paid annually as a lump sum.
  • Carer adjustment payment – for people providing full-time care to a sick child under seven years of age.

For more information, visit humanservices.gov.au/customer/subjects/payments-carers.


Support for carers

  • The Australian Government’s Carer Gateway provides practical information and resources for carers, and a service finder to help carers connect to local support services. Call 1800 422 737 or visit carergateway.gov.au.
  • The National Carer Counselling Program provides short-term professional counselling. It is run by local Carers Associations. Call 1800 242 636 or visit carersaustralia.com.au and click on ‘How We Work’.
  • Cancer Council runs a telephone support group for carers of people with cancer. Call Cancer Council 13 11 20.
  • The Young Carers Program provides services for people aged up to 25 who are caring for a person with cancer. Call 1800 242 636 or visit youngcarers.net.au.
  • Commonwealth Respite and Carelink Centres provide free and confidential information about respite options and support services for carers. Centres are located throughout Australia – call 1800 052 222 to find your nearest centre.

Click on the icon below to download a PDF booklet on Cancer Care and Your Rights


Printed copies are available for free - Call 13 11 20 to order

Instructions for downloading and reading EPUB files

Apple devices

The iBooks application must be installed on your Apple device before you can read the EPUB.
Different ways to download an EPUB file to your Apple device:

  • email EPUB files to yourself and transfer the attachment to iBooks.
  • copy EPUB files into DropBox (or a similar service) and use the DropBox app to send them to iBooks.
  • open EPUB files directly from Mobile Safari and open them in iBooks, where they are saved automatically by downloading the EPUB from the website.

Need more help? Visit: http://support.apple.com/kb/HT4059

Kobo

To download an EPUB file to your Kobo from a Windows computer:

  • download and save the EPUB directly onto your desktop.
  • connect your Kobo to your computer using the USB cable and tap “Connect” on your eReader.
  • select “Open folder to view files” to view the contents of your Kobo.
  • navigate to where you have stored your EPUB file in “Finder”, in documents or downloads, and drag and drop it into the Kobo window. You can now disconnect your Kobo to read the eBook.

To download an EPUB to your Kobo from a Mac:

  • download and save the EPUB directly onto your desktop.
  • connect your Kobo to your computer using the USB cable and tap “Connect” on your eReader.
  • open your “Finder” application.
  • select “Kobo eReader” from the listed devices to view the contents of your Kobo.
  • navigate to where you have stored your EPUB file in “Finder”, probably in documents or downloads, and drag and drop it into the Kobo window. You can now disconnect your Kobo to read the eBook.

Turn on your Kobo and your EPUB will be located in “eBooks”, while a PDF will be located in “Documents”.
Need more information? Visit: http://www.kobo.com/help/koboaura/response/?id=3784&type=3

Sony Reader

To download an EPUB file on your Sony Reader™:

  • ensure you have already installed the Reader™ Library for PC/Mac software
  • select the eBook you want from our website and click the link to download it.
  • connect the Reader™ to your computer.
  • open the Reader™ Library software and click “Library” in the left-hand pane and select the eBook to view it.

Need more help? Visit: https://au.readerstore.sony.com/apps_and_devices/

Amazon Kindle 2nd Generation devices

EPUB files can’t be read on the Amazon Kindle™. However, like most eReaders, Kindle™ 2nd Generation devices are able to display PDFs. We recommend that you download the PDF version of this booklet if you would like to read it on a Kindle™.
To transfer a PDF to your Kindle™ via USB cable from your computer or Mac:

  • download the PDF directly onto your computer.
  • connect the USB cable to your computer’s USB port, and the micro USB end of the cable to your Kindle™. Note: the Kindle™ won’t be available as a reading device while it is connected to your computer until it has been disconnected.
  • open the Kindle™ drive and several folders will appear inside. The “Documents” folder is where you will need to copy or drag the PDF to.
  • safely eject your Kindle™ from your computer and unplug the USB cable. Your content will appear on the Home Screen.

Kindle also provides a Kindle Personal Documents Service that allows users to send documents as an attachment directly to your eReader. For more information on this service, visit http://www.amazon.com/gp/help/customer/display.html/ref=help_search_1-1?ie=UTF8&nodeId=200767340&qid=1395967989&sr=1-1
For more information on accessing a PDF on your Kindle™, visit www.amazon.com/manageyourkindle, log in to your account and click on Personal Document Settings.
Need more help? Visit https://www.amazon.com/gp/help/customer/display.html?nodeId=200375630

Android and PC

You can also download and open eBooks on Android devices and PCs with appropriate apps or software installed. Suitable eReader apps for Android include Google Play Books, FBReader and Moon+ Reader. Suitable software for PCs include Calibre and Adobe Digital Editions.


This information was last reviewed in April 2016
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