Every day, Jack dreads the phone call that could strip him of his new life

The first time I met Jack* nearly three years ago, he was asleep on a bench behind a train station. Even before he opened his eyes, I knew it was him: tall, white beard – a perfect match to my occupational therapy referral form description.

As he lay there, a little girl passed by with her mother and whispered: “Mum, look! It’s Santa. He must be very tired after Christmas.” Her mother hushed her, and they hurried off, just as countless others had before.

Credit: Artwork: Marija Ercegovac

Jack, of course, wasn’t Santa. He was homeless and navigating life with a psychosocial disability. When I met him that day, he had just been accepted for the National Disability Insurance Scheme.

As an occupational therapist working with NDIS participants with psychosocial disabilities, my job is to identify support needs and develop the personalised strategies that are needed to achieve meaningful, lasting changes. When Jack and I had discussions, he was clear on what he wanted: his own home, a garden to tend, and maybe even a dog one day.

At the time, those dreams felt unattainable to him, haunted as he was by past experiences: cycles of homelessness, revolving-door hospital admissions, being labelled “non-compliant” for avoiding rigid day programs, and the humiliation of simply walking into a supermarket and having someone call the police after they deemed him to be unsafe.

Credit: Illustration: Simon Letch

Jack had every reason to be wary. Having encountered so many systems that eroded trust, it took time to build rapport. I explained to him that the NDIS aimed to be different. Its entire purpose is to put people like Jack in the driver’s seat of their own lives.

We worked together over many months, and Jack began to find confidence in his decisions and trust in a small direct-support team – me as his OT and a peer support worker – helping him make headway toward his goals.

Fast-forward to today, and Jack’s life has been transformed. He lives in his own unit with a supportive host living next door – an individualised housing option funded by the NDIS. He tends his vegetable patch and plans to get a dog next year.

Through occupational therapy, we identified strategies to enable him to plan meals, cook and care for himself and his home. We harnessed low-cost assistive technology and environmental adaptations to help him manage an auditory processing disorder alongside the voices he hears – challenges that used to make going into crowded places impossible. Now, by using these strategies, he can navigate supermarkets without incident. No more police calls. No hospital admissions, for two years and counting. A supportive GP at his side. Jack is part of his community, fear-free.

This arrangement works because it’s designed around his unique needs. It recognises that the mental health system once overlooked key aspects of his daily functioning, including cognitive challenges, co-occurring neurodiversity and the impact of past trauma.

This is what the NDIS can do when it works as intended: it is transformative and cost-effective, not only by freeing people from the expensive revolving doors of hospital and justice systems, but by unlocking their ability to live meaningful, connected lives.

Yet a shadow looms. In June 2023, the then-NDIS minister Bill Shorten flagged potential changes to the system for people like Jack, saying: “We believe that if we can set up supports outside the scheme in the area of psychosocial support, maybe not everyone needs to go on the scheme.” These supports, though, will be lower-intensity, and could see as many as 27,000 people with psychosocial disabilities removed from the NDIS.

In August 2024, the government announced it will strip $14.4 billion from the NDIS over the next four years. Since then, an estimated 1200 participants a week have received assessment notices in the mail, with almost half then losing their support. In its 2023-24 Financial Sustainability Report, the NDIS reported 7500 fewer participants joined the scheme than forecast. Cuts to allied health services and housing support options are also on the table, despite evidence showing the significant cost-benefit of investing in services and housing for people with psychosocial disability.

In something of an about-face, the government announced this month that it will spend $1 billion rebooting the NDIS. On paper, this sounds positive: Around 1000 new assessment staff, $503.5 million to better support existing participants and $110.4 million to better detect fraud.

Yet the reality is that these changes only add further uncertainty to participants and leave them deeply worried about the future. When we speak, Jack expresses a fear I’ve heard others echo. He’s dreading the phone call that might strip away the supports that have allowed him to stand on his own two feet.

Without these tailored services, what happens next? Will he lose his home? His newfound community? How long before the police are called again when he is in a supermarket? The “supports outside the scheme” that Shorten spoke of are simply not there to catch people like Jack.

While it’s true that the NDIS needed reforms to ensure long-term viability and stamp out fraud, gutting the scheme threatens to undo everything that has given people on the scheme a shot at a stable, ordinary life.

We’ve seen what can happen when the NDIS operates as it should. Jack is proof that when we invest in tailored, personalised support, we get better outcomes for individuals and society as a whole.

But as funding cuts threaten to undo these hard-won gains, we must ask: are we really willing to gamble with people’s lives just to trim a balance sheet? The answer, I hope, is a resounding no.

*Not his real name.

• Muriel Cummins is a member of the Every Australian Counts steering committee and a co-convenor of the Occupational Therapy Society for Invisible Disability.

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