Lelia juggles work, uni, and caring for her brother. COVID has had some unexpected silver linings

For young carer Lelia Frijat, 2020 has been a “weird mix of positives and negatives”.

Lelia helps look after her younger brother Tarek, who has an intellectual disability and mild autism.

“It’s been quite hard as a young person to juggle managing someone else’s life and your own,” the 23-year-old university student says.

“And trying to understand … how to support his independence and my own at the same time.”

Lelia says the COVID-19 pandemic has affected the family’s access to respite and community services — some dropped off “quite suddenly” — and also slowed down their ability to sign Tarek up to new services.

The pandemic has also spelled fresh challenges for Rita El Khoury, who cares for her brother Johnny.

He has an intellectual disability and is non-verbal, and has experienced “a lot of cabin fever” during lockdown.

Rita is also at uni, and while she used to head out to the library to study, that isn’t an option at the moment.

“It would be very overwhelming trying to get my uni stuff done whilst having Johnny in the house,” the 19-year-old says.

“I would find ways like hiding in my car in the garage, just trying to get an hour or so in, just so I could have no distractions.

“This took a toll on me … I started to lack motivation.”

But both Lelia and Rita say that amidst the challenges, there have been some unexpected silver linings.

They hope these positives will lead to a better future, not just for them but for the 2.65 million carers across Australia.

An invisible, but valuable role

While carers make up about 11 per cent of the population, Carers NSW chief executive Elena Katrakis says they are often “very invisible”.

“It happens in the family home largely, and a lot of carers themselves don’t necessarily see themselves as carers,” she tells ABC RN’s Life Matters.

“They quietly go on.”

Ms Katrakis says during the height of the pandemic, carers reported high levels of psychological distress and isolation.

Most face-to-face services, like peer support, were suspended or moved online, while community or recreational activities were closed. Some families decided to limit their exposure risk to the virus and stopped in-home care services.

Some primary carers also found themselves shouldering more of the load, unable to access “incidental respite” — like an extended family member coming over to help for a day.

Ms Katrakis says the pandemic has given people a taste of something that is “business as usual” for carers.

“A lot of carers have said to us, ‘Everybody else is experiencing the isolation and the lack of contact and things like that’. Things that they experience every day.”

Unexpected rays of hope

Despite the drawbacks, there have also been some gains.

Ms Katrakis says employers are now more accepting of people working from home.

“There’s been some good benefits for carers in that working from home, studying from home … it’s really showing employers that there can be that flexibility in the workplace,” she says.

“A lot more informal family carers are able to balance their paid employment and their informal care, and that has been a real positive.”

Informal care is unpaid care provided to an older or dependent person.

Leila, who is the carer-in-residence at the University of Technology Sydney’s Centre for Carers Research, agrees the shift to flexible work and study has been a benefit.

“What this year really has kind of signalled is that flexible work is possible and that’s what carers really need.”

She says it’s “made a huge difference” to her life, where she balances study, work and care.

She used to travel up to three hours a day to university and work.

“I have new time to spend on focusing on myself, or even just being with the family,” she says.

Supporting carers, beyond ticking a box

The New South Wales Government recently released its 10-year strategy to support carers.

Ms Katrakis hopes it will help workplaces to continue to take steps to actively support carers.

“It’s not just a tick box, it really is having policies in place, doing things actively in the workplace, supporting carers in paid work,” she says.

Some companies have developed hubs for carers to find relevant policies or workplace supports.

Others have carer employee network groups to provide peer support, or offer flexible work arrangements or additional leave.

“Strategies don’t need to be costly or require a major change in operations,” Ms Katrakis says.

Ms Katrakis says there also needs to be greater awareness in the education system of the challenges facing young carers, with services and peer support provided to make sure they know they aren’t alone.

“That they’re not the only one that is going though this, that they share their experience with other carers and other young carers.”

And while their work is often unseen, Ms Katrakis says the value of carers shouldn’t be underestimated.

“The replacement cost of care from the 2.65 million carers across the country, if they stopped caring would be close to $78 billion,” she says.

“So it’s a total of $1.5 billion of care per week provided by informal family carers.”

ABC News Disability Direct