What role do you think Carers NSW plays in the broader community sector?
We have carers at the centre of everything that we do, we listen to them, we engage with them, and we consult with them. This allows us to act as a conduit for information and advice back to governments, service providers and to the broader community about what carers need and what they're seeing as impacts on their role.
We have a focus on improving the lives of all family and friend carers. We've been around for almost 50 years and were the first carer organisation in Australia. We have played a role as the peak organisation for all carers in NSW, and we are a member of Carers Australia and the National Carer Network, so we work together across all the states and territories to ensure national consistency in approach and carer evidence and information.
“Carers are at the centre of everything we do” – Elena Katrakis
We receive funding from the government for specific programs, such as delivering the National Carer Gateway services in the Central Coast, Hunter, New England and North Coast parts of NSW. We also receive funding for evidence based systemic advocacy. We look at how different policy decisions are affecting the different needs of specific carer groups and identify where we can try to make a difference to policy and systemic issues.
We have a particular focus on young carers up to the age of 25 and First Nations carers. For young carers we look at some of the specific challenges they face, as often they are in single parent families caring for an adult and they are balancing the challenge of caring whilst also attending school and maintaining their education, and some will also be in part or full time employment.
With First Nations carers we are trying to understand their unique experiences, particularly in rural and regional NSW, to understand the challenges of caring within their cultural context. With that we can try and influence policy to make a difference for carers in those broader communities through evidence based systemic advocacy and informing culturally specific service design.
Carers NSW also has an employers’ accreditation programme, Carers + Employers, where we can accredit organisations nationally as carer friendly workplaces against a set of criteria and standards across three levels. For informal family and friend carers in paid employment trying to balance work and care, we’ve looked at how flexibility from employers can really translate to good outcomes for carers.
What role do you think decision making has in supporting a person with high care needs?
We know that caring can take many forms - there's the hands-on personal care but also significant support that carers provide with cognitive tasks and navigating service providers and systems on behalf of the person that they're caring for or have guardianship for.
Private guardians are a court appointed role, so they may not necessarily see themselves as carers, especially if they do not have a hands-on role in a person's care and instead have an administrative role around decision making. In fact, many carers do not identify as a carer. Sometimes the term doesn't resonate with them, so they prefer to see themselves as a partner, sibling, son, daughter, whatever their relationship to that person is and it’s just a role that they take on. Obviously, there's a formalised role in terms of guardianship, but it's still often relational and people see themselves in terms of that relationship.
In the 2024 National Carer Survey conducted by Carers NSW in partnership with the State and Territory Carer Organisations, we found that while only 5.6% of respondents in NSW1 were appointed as a guardian under a guardianship order and 15.5% were appointed as a guardian under enduring guardianship, a significant majority of around 78% provided support with cognitive tasks, including support with decision making. A high proportion of NSW respondents also reported assisting with tasks that enable the implementation of these decisions, such as managing finances and administration. So, providing support with decision making is a key task that family and friend carers often undertake.
Being a carer can be incredibly demanding. What would you see as the biggest challenges that they face and what do carers say helps them the most?
Caring can take many different forms and there are many positive aspects to caring. Carers have told us about the relationship that they have with the person that they're caring for and how that's been enhanced by the arrangement.
Carers also tell us about a whole range of different challenges relating to their caring role including difficulties in accessing services for themselves because they don't think about their own needs. We know that carers often focus on the person that they're caring for and so may not think about their own needs unless there's a crisis or something happens, then they may realise they need support for themselves too.
Caring can have impacts on the carer’s health and well-being, as well as social and economic impacts. Carers often give up work or modify their working hours to provide care and this can affect their income, superannuation and impact their financial futures. Often the expenses associated with caring can also be an added impact, whether that's medication or incontinence products or one of a whole range of things, and if someone is not under a particular programme that can assist with that, there's additional financial costs involved. On top of the current cost-of-living crisis that added impact can be incredibly challenging.
“If it doesn't resonate with people, they won't do it, until sometimes it's too late. We want carers to know that it is okay to ask for help” – Elena Katrakis
In terms of what helps carers the most, in part I think it is recognition, but it's not just recognition in terms of ticking a box, it's about the broader service system recognising that there's a carer involved. We've had young carers share their experiences of supporting a parent with a chronic condition and they have been going with their parent to appointment after appointment, without ever being asked about themselves or their situation. There may be no discussion around what support is available for them, particularly if they don’t identify as a carer, so often their own health and social needs are not being acknowledged or addressed. That recognition as a carer is important so that if they do need assistance, they have an idea where to go for help. There is also so much value in peer support and connecting with other people in similar situations.
It’s also important to have accessible information and advice, whether it’s for the My Aged Care system or the National Disability Insurance Scheme (NDIS), or mental health services. Carers need to know what's relevant for them and the person that they're caring for and how to access support, particularly as some of those applications and processes can be quite daunting to navigate. People may think ‘If I apply then we'll get a package of care and then things will be okay’, but there are waiting lists, or you might get a lower level of care than what you feel you need, or there may be some contribution costs involved. If you're a carer that is assisting somebody 24/7, you don't have time to research so you need a range of information and advice that is accessible and relevant.
Additionally, access to respite, whether it be formal or informal, is essential so that carers can take some time out. We know that carers often don't use respite for respite, they use respite to get stuff done! Whether it's running errands, attending their own appointments, or something else, that time is not necessarily used for a break. But carers often really need that break. The opportunity to be able to look after themselves, even if just for a few days, can make a big difference.
So, I’d say the key areas to help carers would be recognition, assistance to navigate the service systems, and the capacity to be able to take a break!
There are approximately 2.65 million carers across Australia (about 11% of the population). Carers exist in all communities and come from all walks of life. cultural backgrounds and age groups. If you care for a family member or friend with disability, a medical condition, mental illness, or who is frail due to age, then there are supports available to help you.
Carer Gateway is for anyone who is an unpaid carer. Whether you are receiving a government carer payment or not, all carers can get support through Carer Gateway. This will not affect any services delivered through My Aged Care or the NDIS, or any state or territory carer services or carer payments you may be receiving.
- For peer support, education sessions, young carers hub and much more, visit Carers NSW or call 02 9280 4744 9am to 5pm, Monday to Friday.
