Helping young carers achieve their dreams

Starting university can be tough. It is new environment, a new way of studying, new faces, and in many cases, a new town or city. It is infinitely more complex when you are dealing with all of that while caring for someone you love.

Mary Pilkinton and Victoria Verhelst are both aware of the sacrifices and complications that can come from juggling study and extracurricular activities with caring responsibilities.

The University of Wollongong undergraduates, who are both in their first year of a Bachelor degree, are just two of the 275,000 young people around Australia who are classified as carers. And they are both determined to shine a light on the pressures and anxieties that being a carer can place on young people.

But first, what exactly is a young carer? According to Carers NSW, a young carer is defined as a person 25 years and under who looks after a friend or family member with a disability, mental illness, drug or alcohol dependency, chronic condition, terminal illness or who is frail aged.

Eighteen-year-old Mary, who is studying a Bachelor of Science, majoring in Human Geography, has spent virtually her whole life as a young carer, for both her brother and her father. It is a lot for anyone to take on, even more so for a young person navigating the complexities of the schoolyard, study obligations and extracurricular activities.

"My dad has motor neurone disease and my brother Dan has autism and learning disabilities," says Mary. "My dad was diagnosed when I was very young, and his type of the disease is not life threatening. He's in a wheelchair and uses an iPad to communicate. My brother is non-verbal. I've grown up with it, so being a carer has always been part of my life. My mum usually cares for my dad, so I've always helped to care for my brother, because he needs constant supervision."

^{UOW student Mary Pilkinton.}

'I didn't share that part of my life'

Mary is an active campaigner when it comes to the rights of young carers. In 2015, she received a NSW Carers Award from the NSW State Government. She is a Carers NSW Young Carer Leader, member of the Australian National Young Carer Action Team and, in 2018, she was Highly Commended in the Queens Young Leader Awards, which recognises young leaders from across the Commonwealth who are advocating for worthy causes.

Mary didn't realise that her own experiences were out of the ordinary until she was about eight years old. Before then, she says she hadn't considered that her life and her responsibilities may differ from those of her peers. But it began to dawn on her that caring for her brother and father, along with juggling her schoolwork and out of school interests, was not an experience shared by the majority of her friends.

While her friends would spend their evenings relaxing or watching TV, Mary was taking care of her brother. She helped to feed and bath him, and put him to bed, and would also provide secondary support to her mother in looking after her dad, assisting with tasks such as cooking and cleaning.

Mary kept the two parts of her life separate.

"I was in middle primary school and I realised that most of my friends had different worries and concerns from me. It wasn't that I made a conscious decision to keep quiet, but I just didn't really share that part of my life," Mary says. "I was very independent, I helped out with chores and housework, and supervising my brother. He needs constant supervision.

"I felt really alone at times because none of my friends realised or could understand what I was going through."

The responsibilities of a young carer vary from person to person; no two situations are alike, and young carers undertake a range of different activities depending on their circumstances and networks.

Mary has been a Young Carer Leader for Carers NSW for the past five years. She says young carers are not given the credit they deserve, nor often the support they need to ensure they can also thrive. She says there are many young carers who provide the sole means of physical and emotional support for their loved ones, which has an impact on their own needs and goals.

"There are kids in rural areas who are often the only ones caring for a parent or a relative, and for them it is all consuming. It means they can barely make it to school, they have all the responsibilities of running a household and with their caring duties, they are not able to pursue their own dreams.

"There is a large demographic of young carers who are born into a caring role, and I think that is so sad."

Helping young carers access support

Of the 275,000 young carers in Australia, approximately 8 per cent - or 22,000 - are primary carers. They are more likely to be female and are usually caring for a parent or sibling. For many young carers, combining study and work with their caring responsibilities can be not only difficult, but at times impossible.

According to Carers NSW, young carers have lower levels of educational attainment and workforce participation than their non-caring peers. They are also less likely to finish Year 12 and have a tertiary education.

And those who are in full-time or part-time work or study often don't receive the support they need to balance their priorities. Carers NSW is working with the University of Wollongong to change this, as part of a project funded by the Australian Government's Department of Social Services Try, Test and Learn fund.

"It wasn’t something that I really shared because I just didn’t think people cared."

- Victoria Verhelst

UOW's SMART Infrastructure Facility is developing a digital platform that will enable young carers to achieve their education and employment aspirations. They can view appointments, set goals, and track their progress.

Tania Brown, Chief Operating Officer of the SMART Infrastructure Facility, says the digital platform is being developed with the help of young carers, including Mary.

"It is such a pleasure to be involved in this project. We have had young carers involved from the start, so it has been a really reciprocal and engaging process, to work out what they need, what language to use and the tools that are going to be most helpful for them," Ms Brown says. "Their feedback has been vital to ensure the platform we create is intuitive and really makes an impact on their lives.

"Young carers are among the most valuable members of our society, so if we can help them to work towards their dreams, and make that journey a little easier, then we have done our job."

'I never thought I was a young carer'

Victoria, who is studying a Bachelor of Arts, majoring in History, became a carer for her mother in her final years of high school. Her mother suffers from chronic pain and in the past few years, has undergone two back surgeries and three brain surgeries. It took the 18-year-old a long time to even consider that she was a young carer.

"My mum getting sick was a gradual process so it wasn't like it was a sudden change that I had to get used to," Victoria says. "It happened over time, so there was a build up to me becoming a young carer.

"I never really thought that I was a young carer. I didn't call myself that and it wasn't until my mum signed me up for Carers NSW that I realised that was what I was."

In addition to her studies, Victoria takes her mother to medical appointments and supports her in her post-surgery needs, grocery shops for the family and generally looks after whatever needs to be done around the house. She also works part-time in hospitality.

In high school, Victoria says she was reluctant to talk to her friends about what was happening. She attributes that, in part, to her reticent nature but also the stigma that surrounds young carers.

"People look at you very differently," she says. "I found high school very hard because there wasn't a lot of support or understanding about what I was dealing with outside of school. It wasn't something that I really shared because I just didn't think people cared."

^{UOW student Victoria Verhelst.}

A revelatory moment came after Victoria attended a Young Carer Leadership Program, run by Carers NSW, which brought together young carers from across the state. Being surrounded by others who were in similar situations gave her the confidence to know that she wasn't alone.

"I don't want to be viewed as a charity case or for people to pity me. It's hard to find other young carers because most people, like me, don't consider themselves as carers, it's just what we do. Or often young carers are reluctant to talk about it, because I think there's still quite a big stigma around it."

Attending UOW has been a game changer for Victoria. For the first time, she discovered an environment that was not only supportive of what she was experiencing, but also happy to take the steps to accommodate her needs.

"Coming to university has changed my life," she says. "I've been able to schedule classes to fit around my mum's appointments. If I'm ever having trouble with hitting a deadline, I just have to fill out the paperwork and it's all okay. When I first started, all my lecturers came up to me and said 'Just let us know if you need anything', and that was really wonderful to be supported."

'Caring for someone is not a burden'

Despite the added pressures that being a young carer brings, both Mary and Victoria believe the responsibilities have given them a strength of character and a sense of independence, as well as the courage to pursue their goals.

"I think being a young carer has given me a lot of skills that I would not otherwise have had," Mary says. "I've had to learn to be a good communicator and to be an advocate, and I'm very open minded."

They are both now passionate about raising awareness of the support needed to ensure that young carers can achieve their own goals and dreams.

"Young carers, as a demographic, are a hidden group," Mary says. "They are often not acknowledged but they are much more common than you think. Young carers range from someone who is the sole carer for their parent, to someone who helps out every now and then.

"I want people to recognise the contribution of young carers and also show that caring for someone is not a burden. I want to ensure young carers can reach their potential. Their caring responsibilities should not come at the cost of their dreams."