Lila and Tanith

‘The NDIS is a perfect example of government-sanctioned harm and neglect. It is legalised abuse.’

Tanith is a carer for her sister, Lila, who has schizophrenia, depression and cognitive impairment.

Tanith, who has her own health concerns, says she has ‘fought tooth and nail’ to get Lila ‘the care that she needs to be able to live independently’.

When the NDIS arrived, she ‘thought finally things could get better’.

‘But over time, that hope has faded, and I’ve been thrust into a nightmare that I never could have anticipated.’

Lila’s plan was ‘not adequate’ and Tanith opted to self-manage it – ‘to have oversight on it to make sure that it was not drained by fraudulent parties’.

Tanith immediately encountered problems with payments. Her inquiries ‘still hadn’t been dealt with’ six months later.

She said the local area coordinator did nothing to help and was ‘dreadfully under skilled for the role’.

‘There was no communication … I have never had a proper conversation with any LAC since the plan was first approved.’

‘You should be able to get their needs met without having to bash down doors.’

Then there were ‘ridiculous charges’ from service providers.

‘My sister has been overcharged for services. She’s had support workers try to siphon funding out of her account for their own benefit.’

Lila went on respite for a week.

‘The support worker tried to take extra money on a daily basis and justify certain fees and expenses.’

When Tanith spoke with the provider, she was ‘emotionally manipulative … threatening to withdraw support’.

‘In terms of the NDIS service provision, there’s a blatant culture of fraud that is broadly deemed acceptable. They can get away with fleecing hundreds if not thousands of dollars off people because nobody is regulating them or overseeing them properly.’

Tanith arranged services through a new provider who ‘made a lot of promises’.

But the next support worker was also ‘completely disinterested in doing anything [Lila] needed’ and was ‘going through the drawers’ stealing money.

‘I don't know if she was held accountable because they didn’t communicate with me after that.’

Tanith was involved in a ‘months-long battle’ at the Administrative Appeals Tribunal (AAT) over whether Lila ‘had a rightful need for cleaning assistance’.

‘I couldn’t afford legal representation. NDIS staff made it look like my sister’s needs were excessive or unnecessary. After an excessively stressful and abusive processes, I finally won everything that I argued for.’

Tanith sees it as ‘a duplicitous and unscrupulous system’ that makes disabled people ‘invisible to society by denying them reasonable supports’.

‘Those that I went up against in the AAT, they’re complicit in the abuse of disabled people.’

Lila’s plan has just been reduced again and Tanith’s ‘been fighting the medical system and NDIS all week’.

‘They don’t give you any reasons. We’re trying to get her into her own house so it’s thrown our plans into chaos. And it is forcing me to continue to care, when I cannot.’

Tanith feels the government is doing everything to cut supports to people with disability.

‘They view them as abnormality that must be eradicated. The human rights of disabled Australians are being systemically violated. I cannot keep fighting the relentless daily strain of neglect, ableism and abuse levelled against us.’