Ash, Kristy and Garth

Ash had a rare condition that caused complex behaviours, cognitive impairment and digestion issues. Kristy, her mum, told the Royal Commission that people didn’t understand Ash’s disability. Because she could ‘walk and talk’ and ‘presented beautifully’ people assumed she was ‘sweet and adorable’.

‘[Ash] could not be left ever on her own. She would be like a two-year-old upending everything because she was confused about the world,’ Kristy said.

In her late 20s, Ash moved from her family home to a group home with four other residents.

‘It was new, it was right there. We could still have her home once a week overnight, which was a big thing for us, and she would still stay in her day program,’ Kristy said.

A few years later, not long after the NDIS was established, Ash’s father, Garth, got a job in a different city.

Kristy and Garth decided to relocate Ash so she could be near them. They found a home they thought would be a good fit because the other residents had similar intellectual disability.

The transition did not go well. The new provider did not know how to care for Ash and didn’t provide adequate support. Other residents would pinch and scratch Ash, and her behaviours escalated.

One time, staff ‘backed her into a corner’ and she reacted aggressively. Staff called police, and the provider evicted Ash without any notice. Kristy and Garth were ‘gobsmacked’ this could happen. ‘On the back of this incredible trauma, she was then without a home,’ Garth said.

Ash had to move back home with Kristy and Garth.

‘This is the first time [Ash] felt the full trauma of that rejection,’ Kristy said.

Her anxiety, obsessiveness and incontinence increased. Kristy and Garth enlisted the family to help her recover.

A year later, Garth and Kristy rented a house for Ash and very slowly transitioned her into it. They started by driving past the house and working on her separation anxiety.

After a month, Ash was in the house full time supported by a small handpicked team of female support workers.

A short time later, the provider managing Ash’s NDIS funding told Kristy and Garth that her funding was inadequate. They threatened to withdraw their services unless another resident moved into the house.

Kristy and Garth were shocked by this request and were concerned Ash was still recovering from the trauma of her last group home. The relationship with the provider deteriorated, until eventually Kristy terminated the agreement.

After protracted negotiations, the NDIA reviewed Ash’s plan and the family found a new service provider. Ash was able to remain in her house with her support workers.

This arrangement ended abruptly when a worker made a workers compensation claim after an incident with Ash. Within days the provider sent all staff an email terminating their employment and suggesting they talk to the family.

The NDIS Quality and Safeguards Commission intervened and instructed the provider to reinstate the staff and provide 90 days’ notice – which they did.

For the next four months, Ash remained in the home and the family took over managing her NDIS funding. Ash’s sister had to drop to part-time work to properly manage Ash’s supports.

The NDIA finally assessed Ash’s needs as ‘complex’ and funded the appropriate supports.

A few months later, in her mid-30s, Ash died unexpectedly.

Kristy and Garth said that they have not heard from the NDIA, despite being promised that a bereavement team would be in touch.

They described the NDIS as a ‘marketplace’ where the providers that succeed are those in the ‘strongest position to bargain’. They believe people with cognitive disability are at a significant disadvantage because they are not able to advocate for themselves within the complex NDIS system.