Ephraim and Aja

Ephraim, in his early 30s, had a brain haemorrhage shortly after he was born. He is non-verbal and has very complex needs. He lives with his mother Aja and receives 24/7 care.

‘We just went through a rough time,’ Aja told the Royal Commission. ‘Rough times in the last year, or three years with the pandemic, high level of autism, a lot of self-harming. But we try to battle on and, you know, face the day with optimism and things like that. And yeah, and keep going.’

Ephraim and Aja are Aboriginal, and Aja said they have had some difficult interactions with the NDIA, in particular with staff who lack understanding of First Nations culture.

She described a meeting with an NDIA planner which ‘got off to a bad start’. Aja told the planner where her Country was, and asked the planner where she was from.

‘It was like me saying, “Hey, where’s your mob?”’

But the planner, ‘lacking the cultural competency’ to understand that, took it as ‘a slight on her professionalism’.

‘So, I’ve got to, kind of sit down with somebody like that and we start off on a bad footing … because she doesn’t understand that that was coming from probably my cultural way of talking, you know?’

That ‘bad start’ escalated, and Aja ending up walking out of the meeting.

‘We had gone in really prepared because … my son’s got very, very good therapists and psychiatrists and allied health team. And we went into this meeting and basically it was as if [the planner] was prepared or instructed to shut it down right from the start. She never once asked me about Ephraim … I think the thing that I still find good was – I don’t know where I got the strength, maybe it’s the Aboriginal woman in me ­– but when enough is enough, I just could not take it anymore, and maybe that was the best thing that I did that day … I just said, “I have to leave.”’

The encounter left Aja deeply distressed.

‘It’s almost like a weeping from, you know, our soul, that, when something – unkindness like that happens, and that unkindness has come from a lack of cultural competency and support … I can say that this person that sat in front of me that day did not have the expertise that we would have expected her to have had,’ she said.

‘And where do we … where do people from culture sit with it? If they’re not like someone like myself, who’s had to fight hard for my son, and who is a warrior mother and who is a strong advocate, what happens to our people? Do they just kind of get flicked over?’

Aja sees the NDIS as a ’fantastic thing’, but believes cultural awareness training for planners and other staff should be mandatory.

‘I think that we’re dealing with a serious lack of cultural capacity, or lack of cultural requirement, and the NDIS doesn’t seem to feel that it’s important. We all hear what is supposed to be being done, but when are we going to start having this really serious conversation about cultural competency where, you know, Aboriginal and Torres Strait Islander people from the lived experience can be offering that advice? Where are the Aboriginal trainers?’