Brisbane man ‘living in fear’ locked in NDIS battle for critical support

A man just a ‘few muscles away’ from being paralysed due to a devastating condition has shared his horrible reality after the NDIS rejected his pleas for essential care eight times and his family prepares to launch legal action.

Kevin Pretorius lives with Duchenne Muscular Dystrophy.

A man just a “few muscles away” from being paralysed due to a devastating condition has shared his nightmarish reality after the NDIS rejected his pleas for critical care eight times.

Brisbane man Kevin Pretorius, 27, lives with duchenne muscular dystrophy, the same degenerative muscle condition as his late friend Jack Bailey, who passed away in August.

Like Mr Bailey, Mr Pretorius is locked in an ongoing battle with the National Disability Insurance Agency to access essential one-to-one care.

For the 27-year-old, accessing one-to-one 24-hour support would allow him to maintain his daily independence.

Mr Pretorius’ mother, Jo Pretorius said for the past four years her son has been knocked back by the NDIA eight times.

Ms Pretorius described her son, who has muscle movement limited to his fingers, as living with constant fear and anxiety.

“For the past four years we have been fighting to get him one-to-one care so he can keep living on his own and we just keep hitting hurdles and they keep making decisions that are based around other conditions,” Ms Pretorius said.

Ms Pretorius said during meetings with the National Disability Insurance Scheme staff, they admitted they hadn’t read Mr Pretorius’ material because they didn’t have time.

“Every time we go back to them with a change in circumstances, we have a month to put in all the details, all the proof, which we do, we do the reports and the doctor visits and then they take three months to decide whether they accept it or not,” Ms Pretorius said.

Kevin Pretorius has been knocked back by the NDIA eight times.

Mr Pretorius said being granted the one-to-one care would allow him to live with dignity.

“I am not asking for more than what I need. I am asking for recognition of the disabling nature of duchenne muscular dystrophy and the necessary resources to meet my basic, life-sustaining needs,” he said.

“The anxiety that comes with knowing that if something goes wrong, no one will be there to help me, is suffocating.”

The 27-year-old described his condition as a “terrifying nightmare”.

“The fact that I’m a few muscles away from being completely paralysed is like a terrifying nightmare that I sadly don’t have the ability to wake up from,” Mr Pretorius said.

“It’s a fear that can feel consuming — knowing that the resources I need to stay safe and live independently are continually denied to me.”

Kevin Pretorius lives with Duchenne Muscular Dystrophy.

Ms Pretorius said it felt as though her son “just can’t win” and the risk to his mental health following the ongoing rejections was “huge”.

“We are fighting for the same thing Jack was,” Ms Pretorius said.

“Just like Jack, they get anxious and they have a fear of not being able to call somebody or get the help they may need.

“With Kevin the fear really is not being able to help yourself, not being able to call someone.”

Occupational therapist Izzi Harman said Mr Pretorius was being left at risk by the NDIA.

“When Jack lost his life following the NDIA’s sudden change to his support plan, it was supposed to be a wake-up call to our leaders,” Ms Harman said.

“The disability community had been raising concerns for years about the dangers of removing choice and control from participants, yet Jack’s story was a heartbreaking confirmation of their fears.

“Now, Kevin — a close friend of Jack’s and another person with duchenne muscular dystrophy — is living in fear.”

Kevin Pretorius’ friend Jack Bailey passed away on August 11, having never secured the care he needed.

An NDIA spokeswoman said Mr Pretorius had “significant” funding through shared supports.

“The National Disability Insurance Agency (NDIA) makes funding decisions based on all the available evidence and in line with the NDIS Act and Rules,” she said.

“Mr Pretorius has significant NDIS funding, including access to intensive and shared supports 24 hours a day. 

“As there is a request to the administrative review tribunal to have Mr Pretorius’ funding decision reviewed, the agency will not comment any further.”

Mr Pretorius’ family have now engaged a lawyer to fight the NDIA’s decision, But Ms Pretorius said she worries about those in similar situations who cannot afford to take matters to a tribunal.

“Kevin is not the first and he definitely won’t be the last, there are so many other boys who will come through this system and I feel they really need to be more prepared for it,” she said.