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.
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.
- 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.
The person you care for may give you the power to act on their behalf on all financial matters if they lose the capacity to make their own decisions. This is usually called an enduring power of attorney.
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. Call your local Cancer Council on 13 11 20 for more information.
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).
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.
Workplace issues for carers
This section provides a snapshot of some of the issues faced by working carers. For specific information about carers’ rights at work, see Cancer, Work & You booklet, or contact Carers Australia by calling 1800 242 636.
All full-time employees except casuals are entitled to receive 10 days of paid personal leave each year, which includes sick leave and carer’s leave. Part-time employees receive this entitlement 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 Fair Work Australia and search for ‘sick and carer’s leave’.
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.
Your employer may need to make arrangements to help you manage your work and caring responsibilities. They can only refuse to provide these arrangements if the changes would cause serious hardship to their business. 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.
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 to the Australian Human Rights Commission, the Fair Work Commission, or the human rights, equal opportunity or anti-discrimination agency in your state or territory.
See further information on making a complaint about discrimination in the workplace.
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. These include:
- Carer Payment – for carers who provide full-time assistance in the home of the person 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 about financial assistance for carers, visit the Department of Human Services website.
See Caring for Someone with Cancer for more information.
Support for carers
There are specific services for carers of all ages to help support their physical and mental wellbeing:
- 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.
- The National Carer Counselling Program provides short-term professional counselling. It is run by local Carers Associations. For details, call 1800 242 636 or visit Carers Australia.
- Cancer Council runs a telephone support group for carers of people with cancer. Call 13 11 20 for details.
- The Young Carers Program provides services for people aged up to 25 who are caring for a person with cancer. Call 1800 242 636.
- 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.
- A carer is someone who helps and supports a person through a disability or illness.
- The person you care for may give you the power to act on their behalf on all financial matters after they lose the capacity to make their own decisions. In some areas of Australia, this is called an enduring power of attorney.
- You may be appointed to make medical decisions for the person with cancer. This is managed differently in each state and territory.
- Working carers are people who have caring responsibilities in addition to paid casual or permanent employment. For information about carers’ rights at work see Cancer, Work & You.
- All employees are entitled to two days of unpaid carer’s leave on top of any available paid leave.
- If you feel you have been discriminated against because of your caring responsibilities, you may make a complaint to the Australian Human Rights Commission, the Fair Work Commission or the anti-discrimination, human rights or equal opportunity agency in your state or territory.
- The Department of Human Services (Centrelink) supports carers with a range of payments, including the Carer Payment, Carer Allowance and Carer Supplement.
- There are specific support services for carers of all ages, such as counselling and respite services and support groups.
Expert content reviewers:
Therese Burke, General Counsel, Cancer Council NSW; Toni Ashmore, Manager, Cancer Psychosocial Service, ACT Health, ACT; Art Beavis, Consumer; Marina Kastelan, Neuro-Oncology Cancer Care Coordinator, Royal North Shore and North Shore Private Hospitals, NSW; Dr Deborah Lawson, Legal Policy Advisor, McCabe Centre for Law and Cancer, Cancer Council Victoria and Union for International Cancer Control, VIC; Sarah Penman, Legal and Financial Support Services Manager, Cancer Council NSW; Jeanne Potts, 13 11 20 Consultant, Cancer Council Victoria, VIC; Sharnie Rolfe, Consumer; Helen Tayler, Social Worker/Counsellor, Cancer Counselling Service, Belconnen Community Health Centre, ACT. We would also like to thank the health professionals and consumers who worked on previous editions of this title, as well as the original writers: Louisa Fitz-Gerald, Jenny Mothoneos, Vivienne O’Callaghan, Marge Overs and Laura Wuellner.
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