'I had to stop working to look after a loved one with a disability. Now I survive on $11 a day.'

When Antoneta Krzeva started caring for her god-brother, Zoran Pelovski, full time, she had no idea the challenges she would face in trying to provide him with the best care she could.

Prior to quitting working to look after Zoran, Antoneta worked as a disability support worker, earning roughly $45 per hour. Now on the government's Carer Allowance, which allocates $154 a fortnight, she has to survive on around $11 a day — a stark contrast to the Australian minimum wage, which is $24.10 per hour.

Antoneta and Zoran's parents first met in Darra, Brisbane, in the '70s after both immigrating from Macedonia. The two couples had a strong bond, and after they each welcomed children, Antoneta and Zoran's mothers became god-parents to each other's kids.

Zoran Pelovski (centre) and Antoneta Krzeva (right). Image: Supplied.In 1981, tragedy struck the family when Zoran was charged with killing his 21-year-old sister, Violeta. Though undiagnosed at the time, it was later found he had paranoid schizophrenia, and after spending four years in prison, Zoran spent another seven years in a psychiatric hospital.

Zoran's mother, consumed with grief, never visited her son in prison or hospital — and it was Antoneta who looked out for him.

Watch: We've Got This — Parenting With A Disability. Post continues below. 

While Zoran used to be cared for by third-party organisations, the alleged poor conditions — including dirty bed linen, clogged toilets and dirty laundry scattered throughout the home, said Antoneta — led the pair to agree it was in Zoran's best interests to be looked after Antoneta full time.

"You could not trust these people alone with Zoran or in his home, as they couldn't clean, couldn't cook, couldn't show him a routine for domestic cleaning, washing or maintaining his home, yet clearly they were paid by the package to do nothing," Antoneta told Mamamia.

Zoran's home before and after Antoneta began caring for him. Images: Supplied.

As well as giving Zoran a clean home in which to live, Antoneta believes it is Zoran's best interest to be cared for by her as she can help provide him opportunities to learn new skills.

Cleaning, house maintenance, playing musical instruments, swimming, going to the gym, dog walking and practising social skills during outings are just a few of the things Zoran is able to do under Antoneta's care.

Zoran learning maintenance skills and swimming with Antoneta. Images: Supplied.

 Zoran's doctor wrote a letter stating that his mental health is better "with family support" under Antoneta. 

"I truly believe age and disability and mental health should be firstly encouraged and supported and remunerated to live at home with family, friends or representative of the participant's choice and control. Organisations should be a last resort if nobody else can do the care," Antoneta told Mamamia.

Yet despite Antoneta's experience as a support worker, the National Disability Insurance Scheme considers it a conflict of interest for her to be Zoran's paid carer, NDIS plan nominee and power of attorney (a role she took on as Zoran doesn't have the capacity to make decisions for himself) as well as continuing as a paid disability support worker.

The Queensland Civil and Administrative Tribunal disagreed with this decision, but the NDIS decision still stands.

"For one decade I have been fighting, and it has been hell. It has destroyed me financially, emotionally, physically and spiritually — [it is] a death sentence. Yet I have all the qualifications and accreditations, and police yellow and blue card clearances — plus I am the right fit that Zoran Pelovski is comfortable with," she added.

One of 304,500 Australians receiving a government carer payment, Antoneta is not alone in her challenges. George Helon has been caring for his mother for eight years, managing her appointments, medical needs and tasks, leaving little to no time for himself. He has since taken on advocating for better carers' rights.

"I've started a petition to raise awareness. The more support we get, the more the government will have to listen," George told The Senior.

"Over the past decades, no government has faced the reality of the personal sacrifices and price we pay as carers head on — but they're happy to have us quietly working away for next to nothing, saving them billions of dollars in unpaid care whilst we suffer physically, emotionally and financially," he said. 

The low financial support disability and aged carers receive has resulted in at least 17 percent of households receiving the carers payment falling below the poverty line, according to the Australian Bureau of Statistics.

A primary carer will also lose an average $175,000 in superannuation and $392,500 in their lifetime earnings, according to Carers Australia. And one recent study suggested that if carers were financially compensated for their informal unpaid work, they should receive an amount of $21 per hour — much higher than the current Australian standard, yet still below minimum wage.

For now, Antoneta and Zoran will continue to wait for a change of heart from the NDIS around Zoran's care. But no matter the outcome, one thing's for sure: Antoneta will continue fighting to prioritise her god-brother's best interests.

You can find George Helon's petition here.

Feature Image: Supplied.