NZ should be ‘embarrassed’ about its global ranking on young carers, says world leading expert

Natalia Sutherland
Source: Sunday/1 NEWS

Tens of thousands of young Kiwi children provide a significant level of care for family members across the country every day. They’re known as ‘young carers’, yet most New Zealanders won't have heard of the term before. Sunday and took an in-depth look at this hidden group of young New Zealanders and found how vital it is they are supported.

Amber is 12.

Zak and Annabelle are 14.

They are all young carers, part of an invisible, unpaid and vulnerable army of kids putting their childhood on hold while they look after whānau who can’t look after themselves.

Caring for family members with complex health issues or disabilities without external help.

It’s not known in New Zealand how many children like Amber, Zak and Annabelle are providing significant care for family members because they are not officially recognised or counted.

A leading international expert says New Zealand should be ashamed of its poor record of identifying and supporting young carers.

Dr Saul Becker from the University of Sussex in the UK says leaving young children to provide significant care unsupported could lead to them suffering mental health issues later in life.

“Not doing anything to recognise, to identify and to support young carers is a stain on a country’s civilised nature,” he says.

“It’s relying on children to provide the care that they shouldn’t be providing as children and that needs to be provided by the state, by healthcare professionals, by social workers. Or should be provided by the state in partnership with children and others so that children’s lives are not blighted by caring responsibilities.”

Once a young carer himself, first looking after his grandmother then his mum, Becker has worked alongside and advised governments and policymakers worldwide for 30 years to identify and create support systems and services for young carers.

“My work and my colleagues’ work have helped to identify this group of children as a very vulnerable, hidden invisible army of children who most countries in the world have failed to recognise or worse, have ignored,” Becker says.

Part of Becker and his colleagues’ work has included the creation of a global classification which ranks a country based on its awareness and response to young carers.

It measures whether it has undertaken research on its young carer population, its response and support services supplied to young carers.

On this global table New Zealand ranks at the bottom with little to no awareness of who or what a young carer is, little research undertaken on these children and support created for them.

At the top of the list leading the world with their response sits the UK and Australia.

A country like New Zealand performing so poorly globally when it comes to recognising and supporting young carers is disappointing, says Becker.

“It makes me angry, but also really sad, actually, that a country like New Zealand, which leads in the world on so many things, a civilised nation which has such fantastic values and support systems in place for so many things, has been so slow to identify young carers in your midst.

“We need, particularly for New Zealand to wake up. To wake up and say, ‘this isn’t acceptable in a civilised, decent society, we have to do something to recognise and support young carers’.”

New Zealand is “so far behind” in support for young carers

For Kiwi researcher Lauren Donnan, finding out she had been a young carer while working on her PhD came as a complete surprise.

“I was reading an article, and it was saying that some kids look after friends or family with disabilities and I remember thinking, ‘Wow, like, that’s me’.”

At just 14-years-old Donnan’s mum died and she began caring for her older brother with autism and an intellectual disability.

“It felt like a very natural extension of what was happening in my life at the time that my mum had passed away.

“My dad had to work internationally, and then my role for my eldest brother Beefy was cooking the dinners and making sure he was OK.”

Caring for her brother while her dad was working wasn’t something Donnan ever questioned.

It wasn’t until she was in her early 20s that she began to struggle with her mental health.

“I started experiencing a lot of anxiety and I was feeling quite depressed.

“It was like my body was forcing me to stop and think about mum and think about what had happened and think about this huge change in my life.”

Socialising with others brought on anxiety and Donnan began to withdraw from friends.

“It was getting quite dark, the sort of thoughts I was having, I guess, around not understanding why it was happening.”

With the support of family and her doctor Donnan was able to seek support.

Reading an article on young carers while researching for her PhD Donnan realised at lot of her struggles with anxiety and depression stemmed from losing her mum at young age and being thrown into a role as a young carer.

Watch the full Sunday story here

Refocusing her research, Donnan began to look for other young carers like herself across New Zealand. A search which would prove to be difficult.

“I did my research on young caring and then six months of really trying to get participants to meet other young carers, I think I had two.

“I thought, ‘Oh, it must only be me, this is bizarre’.

“And then I realised that it’s because we don’t have supports and there’s no awareness of what a young carer is.”

New Zealand’s support for young carers is so “far behind” countries like Australia and the UK it’s practically non-existent, making it incredibly difficult to find and help young carers, Donnan says.

Most young carers aren’t even aware they are young carers.

“These kids are drowning”

Around 40,000 15 to 24-year-olds are believed to be caring for siblings or parents who are ill, disabled, or have mental health or addiction problems.

However, Donnan believes this number is much higher.

“We know that [number] was from census data and won’t have actually captured the number of young carers.

“From my study, from talking to people, I think we would blow the UK and Australia out of the water. I think we have a huge number of young carers.”

Becker estimates eight per cent of young New Zealanders under the age of 18 are carers.

“These children are an invisible, hidden army of carers in New Zealand society. They are there to support the economy, the society, they are part of your infrastructure, but you don’t see them,” he says.

“They are in every classroom, in every school, in all New Zealand and the reality is that they are mostly unknown of, unheard of.”

Caring for family members is a “natural part” of family life in New Zealand and comes with many positives for children, Donnan says.

“It’s not the fact that kids are caring, I think it’s a beautiful part of family life that families choose.

“But when it comes to the level of overwhelm that is where we run into the issues,” says Donnan.

“Kids are taking on these huge caring roles, which means that they’re not attending school, their mental health is really poor.”

Donnan wants New Zealand to take action and “invest in young carers”.

“It is so important that we look at young carers, we help young carers to identify that they are young carers so we can give them support, because without support, these kids are drowning.”

Allowing the children to care for their families but also allowing a child and their family to have a say in what support they receive is vital, says Donnan.

“You’ve got to make sure that it’s the families taking the lead on services, it’s the families telling others what they need.”

If New Zealand decides not to take action and create a support system for young carers they are “condemning a hidden army of children to become a lost generation,” says Becker.

“You will then bear the consequences of a group of people who are likely not to be as employable as others, who may end up in lower paid jobs because they don’t have the qualifications or particular skills.

“[They] may become increasingly reliant on social security support or on other welfare services, social services, and maybe even other mental health or other difficulties.

“The cost of doing nothing will be far greater than the cost of responding supportively and purposefully to support young carers.”

What can New Zealand do?

“New Zealand needs to first identify young carers in their midst,” says Becker.

“You need to calculate or estimate the number of young carers.”

From there, schools have to identify pupils who are young carers and make sure there is support put in place for those children while at school, says Becker.

A specific support system also needs to be put in place in Māori and Pasifika communities whose children are particularly hidden and isolated while providing care for family members.

“Māori and Pacific Island communities we know, because they are similar to other indigenous populations in other countries, that they will be providing care that’s even more invisible,” says Becker.

“They don’t recognise themselves as young carers because that’s seen as part of the inter-generational contract that exists strongly in those communities.”

He says the New Zealand Government needs to do “concentrated work, research and evaluation” of children and families in those communities to understand what their needs are and support those children with appropriate care.

“Understanding better what those children say they need to support them and what the people who have illness or disability say they need to support them so that they don’t have to rely on their children to have to provide that care.”

With many families and children anxious of speaking up and asking for help for fear social workers will take the children away, it’s crucial families and young carers have a say in the support they’re given at home, says Donnan.

“They need to have some say in how much care they’re doing.”

Becker says the New Zealand government needs a “policy and strategy that will say, ‘We are a country that recognises that children are an invisible part of our health and social services system.

“’We value them and will identify, support and celebrate their achievements but we will not let them suffer the outcomes and consequences of being left alone to provide care’.”

In a statement to Sunday, Minister for Social Development and Employment Carmel Sepuloni says, “through Mahi Aroha - Carers' Strategy Action Plan 2019-2023 , the Government is committed to improving the understanding of young carers, their needs, trends and issues, and support service development and decision making”.

She says MSD will work with the Carers’ Alliance in data collection work “which will assist with building a picture of young carers in New Zealand”.

Becker says New Zealand’s current Carers’ Strategy just isn’t good enough.

“[The strategy is] very general and low grade at the moment. They lack any specificity.”

He has urged the New Zealand government to take action.

If you think you’re a young carer, Carer New Zealand has a Facebook page called YoungCarersNZ where you can find support online.

They are also currently conducting a survey on their Facebook page which is part of a global initiative on young carers. You can find the link here.

Reporting by Mark Crysell

Produced by Julia Sartorio

Digital reporting by Natalia Sutherland

Editing by Bleddyn Parry and James Hope 

Cameras - Gary Hopper, William Green, Rewi Heke, Ben Ireland