Benji and Kit

‘As his family we have been forced to spend much of our time fighting fires, continually pleading for action during crisis, revisiting his care plans frequently, spending countless hours lobbying and … establishing our credibility.’

Benji, Kit’s brother, died unexpectedly in 2021.

Fifty-years-old, he had attention deficit hyperactivity disorder, bipolar disorder and type 1 diabetes.

Kit told the Royal Commission that throughout Benji’s life, it was a constant ‘battle’ to secure medical and mental health treatment for him.

‘Because he had type 1 diabetes, he could not manage this when his mental health declined. I had lost count of the number of times myself or other family members would find [Benji] unconscious, scoop him from the floor, a chair, his car on the side of the road, and rush him to hospital.’

Kit said it was only after he experienced ‘almost total mental and physical collapse’ that anyone would take their pleas seriously.

Over the years, doctors would stabilise Benji then immediately discharge him. The family would beg the hospital to transfer him to the mental health unit and treat his mental health issues, but they’d often refuse.

‘My brother had a long history of masking his mental health conditions during mental health assessments, even when he was unstable. His situation placed enormous burden on our family and emergency services.’

In 2019, Benji was living independently with limited in-home supports in a small town. His physical health had been declining for some time and he’d developed a severe infection in both legs. His vision was impaired and he was incontinent.

A new support worker tried to turn things around for him. She helped him with his diet and medications and took him to health appointments.

A few months later, the COVID-19 pandemic ‘sealed [Benji]’s fate’.

Because of the restrictions, the provider cancelled Benji’s supports without telling Kit. She only found out when the support worker contacted her, concerned about Benji.

Benji’s mental health deteriorated. He stopped taking his diabetic medication and wasn’t able to manage the infection in his legs.

Kit struggled to find treatment or support because service providers and clinics were shutting down or limiting their operations.

Eventually Kit managed to find a mental health clinic willing to assess Benji. Even though he was clearly disorganised, dishevelled, without his medications and unwell, the treating team found his mental health was stable and he did not need to be admitted.

They suggested Kit move Benji to a town with more resources, ‘forcing the NDIS to become involved’. They said Benji would have access to ‘a range of accredited support agencies, services and specialist care’.

Kit said she had her doubts but ‘was desperate’.

Benji relocated, transferred to a new NDIS provider, and limited in-home supports resumed.

However the cleaner often refused to work because of the state of Benji’s house and Benji would tell support workers to go away.

Kit spoke to the NDIA on many occasions, begging them to move Benji to a facility with 24/7 care, to no avail.

Unable to manage the infection in Benji’s legs, Kit took him to hospital.

As was the pattern, as soon as doctors treated the infection, they discharged him despite ‘his clear inability to administer his diabetic medication because of his mental state’.

A few days later a support worker found Benji unconscious and called an ambulance.

Benji died later that day.

The provider told Kit they didn’t conduct welfare checks because they were respecting Benji’s right to say ‘no’. It’s likely he had been unconscious for days.

After an independent investigation, the provider admitted to catastrophic, systemic failures.

‘I want vulnerable Australians like my brother protected during times of crisis and supported when they are well to achieve the best life they can and seek their own level of independence. I would like families acknowledged and valued for the incredible resource they provide as enduring informal support.’