Nik and Betsy

‘No-one with disability is less. You find what they're good at, they excel.’

Betsy is the mother of Nik, a First Nations teenager who’s autistic and has attention deficit hyperactivity disorder (ADHD).

‘I actually knew something was wrong with him from the day he was born because I actually never heard him cry,’ Betsy told the Royal Commission. ‘So my poor little baby, I used to have to set alarms for him just so I could remember to feed him because he wouldn't make a whimper.’

Betsy struggles to get Nik support.

‘Every time I was trying to get help … they would tell me that he's not severe enough. Like, I don't understand how a child that can't dress themselves and talk at seven years old how that's not classed as severe.’

Betsy said Nik wasn’t initially eligible for support at primary school, because his IQ was just outside the qualifying score.

‘You get a score of 70, you get funding. You get a score of 71, you get nothing … So his score in grade 3 was 71. So the next time he got scored I told him to get a couple wrong, which is horrible. One score over shouldn't matter for him to be able to get an aide in the class with him and to be able to have that speech therapy.’

Once Nik had the extra support, he started speaking. Betsy tried to transfer him to a special school, but he didn’t want to go.

‘I know I'm different,’ he told his mum. ‘I don't need to go to a school where everyone knows that I'm different.’

So he attends a mainstream school which, Betsy said, is ‘very hard’ for him because he ‘already feels like a social outcast’.

Nik ‘excelled’ at primary school and was catching up academically with his peers in his first year in high school.

‘The principal there, amazing,’ Betsy said. ‘He had compassion for the kids that came in, helped them a lot. When it came to needing financial help with aides or, you know, extra one-on-one in class, he made sure that all happened.’

But when a new principal arrived, Nik went backwards.

‘All [the new principal’s] worried about is spending money on art classes and getting his high [academic] scores.’

The NDIS doesn’t support Nik.

‘He's been rejected through NDIS nine times now, so I haven't even bothered with that no more.’

Betsy told the Royal Commission that Nik was accepted at one stage, but because her doctor went on holiday and she couldn’t return a form on time, the NDIS stopped his funding.

‘I never tried again after that. It's too stressful, too, too stressful. So now I just work two jobs … I have to work two jobs so he can function properly.’

Betsy works a day shift job and then a night shift to pay for Nik’s supports.

‘So I have like two hours, three hours sleep every night … I had everything when I was younger so I need to make sure that [Nik has] the best possible start, middle and end. So everything that I go through for [Nik] when it comes to like doctors and everything, it's all private. I don't go public. So I pay those.’

Betsy said it’s better than waiting ‘months or years’ to see a specialist in the public system.

‘Like one of my friends, her child should have been diagnosed with ADHD when he was five years old or even younger. When he wasn't, I told her to go to my doctor even though it was so much money, and he got diagnosed straight away with it. They just classed him as a naughty child before that.’