Last-minute NDIS relief for designer featured on Gardening Australia

Garden designer Joshua Ruff has been given a six-month reprieve by the National Disability Insurance Agency (NDIA) after speaking out about changes to his NDIS plan, but says the fight to keep control of his care is far from over.

The 33-year-old, who has Duchenne muscular dystrophy and lives on a lavender farm in Maldon that was featured on Gardening Australia, has self-managed his NDIS funding since 2017, employing trained family members as support workers.

Mr Ruff said he had approval for the paid family supports due to his circumstances since he started managing his funding.

Last weekend, Mr Ruff posted an emotional video to social media saying the NDIA had stripped him of his right to self-manage his own care.

"No consultation. No capacity assessment. No warning," he wrote.

The video attracted thousands of views and prompted widespread support online.

After ABC reporting, the NDIA contacted Mr Ruff and agreed to allow him to continue self-managing his plan for the next six months while it reviewed his funding arrangements.

The NDIA said its concern was not that family members were providing paid supports, but that Mr Ruff required high-intensity supports, including ventilator and tracheostomy management.

It said the supports should be delivered by qualified workers through registered NDIS providers.

Mr Ruff's sister and member of his support team, Kristine O'Toole, said the six-month extension was welcome, but did not address the long-term issue.

"Josh has still got a fight ahead of him," she said.

Ms O'Toole said Mr Ruff's support team had already been trained by medical professionals at the Austin Hospital to manage his ventilator and tracheostomy care after two cardiac arrests.

"We are more than capable of looking after him," she said.

"This is not just care that anyone from an agency can just send someone out for. We've been trained over the last six years."

She also questioned whether agency providers could deliver the same personalised care, particularly in a rural area where finding support workers was difficult.

"He can just do an eye movement, and we know what he's talking about," she said.

Ms O'Toole said the case highlighted a broader issue with how decisions were made.

"If they came out and actually visited their participants, they'd know what people need," she said.

"They assess them from behind a desk with no knowledge of the actual person."

Mr Ruff has also sought help from his local federal MP, Lisa Chesters.

In a statement, Ms Chesters said the NDIA was "independent and makes decisions about people's plans at arm's length from government".

"The NDIA does not usually pay family members to provide NDIS supports, unless there are exceptional circumstances," she said.

While the temporary reprieve allows Mr Ruff to continue self-managing his care for now, the NDIA still intends to transition him to agency-managed funding after six months, leaving uncertainty over his future care arrangements.