Benoit and Aria

Benoit is in his early 20s and has cerebral palsy. He is autistic and has ‘significant intellectual impairment and multiple medical conditions including epilepsy’, his mother Aria told the Royal Commission.

‘He has the developmental age of a toddler and cannot do a single thing for himself. He is non-verbal. He has no way of communicating. He has mobility problems, he's incontinent, he's got a vision impairment.’

With the NDIS rollout, Benoit’s parents thought his disability services funding ‘would simply roll over and nothing would change’. But it had ‘a huge impact on his supports’.

‘We had agencies and NGOs who were supporting our son … suddenly cancelling because there was no funding. Lots of things just fell apart very, very quickly.’

The government was looking at transitioning Benoit into independent living with supports from the age of 16.

‘Because the home situation and his challenging behaviours and the no sleeping, and just the level of support he needed was way more than I could provide for him 24/7. By the time he was 18, he would be able to be living independent and we could all have a far better quality of life. But the NDIS did not want to follow that process.’

Aria spoke to an NDIS planner whose response was ‘disgraceful’.

‘She said to me that I basically was wanting to abandon my son and had no interest in caring for him. Whereas we are doing everything we possibly can to support him and make his life better.’

NDIS planners kept ‘demanding’ report after report, but then ignored them.

‘The NDIA were very, very determined to not pay for the supports that [Benoit] required. Every therapist's report, every behaviour specialist's report who'd known him for many years, they didn't wanna listen to any of it,’ Aria said.

The NDIS kept promising it wasn’t going to cut Benoit’s funding. But a new planner then halved his plan without ever meeting Benoit or his parents, and he ended up ‘completely out of funding’.

‘It was a nightmare. We didn't have funding to do short-term accommodation, so the only option we had was to have him stay at our home with carers for short periods of time.’

Aria said NDIS planners are unqualified and ‘can’t even wrap their head around one disability’, let alone ’such a complex young man’. They were ringing Benoit’s therapists ‘abusing them for writing a report’.

‘I am horrified that someone who's had no training in disability whatsoever thinks they know better than professionals and can just make their own mind up. The allied health professional doesn't make it up. Why are they being constantly questioned over their professionalism? That's then detrimental to the person with a disability.’

The case ‘kept going around in circles’ and Benoit’s parents ended up in the tribunal process, ‘fighting it out for funding’. He had 10 NDIS plans in six years.

‘And we've been just labelled as these people who just want to demand everything. We will only argue and fight for what it is that his basic needs … We're not asking for the whole wide world.’

Today, Benoit’s funding is ‘not ideal’ but ‘his day-to-day care needs are met’.

‘He's very well cared for. We're very happy with the team of people who are looking after him.’

Aria hopes the review system will improve.

‘His needs and his level of support are not changing so much that every six months we need another report. We want to make a difference, not just for him, but for people who access the NDIS and just have a horrendous time trying to ensure that their family member is cared for.’