Kylee and Paula

‘[Kylee] had many friends and … she was talking and she was communicating with me … But she’s lost all of that now.’

Kylee, a First Nations woman in her 50s, has lived with her mother Paula most of her life.

As a toddler Kylee achieved typical developmental milestones, had good speech and play skills. She was shy, but socialised with family and friends and had no behavioural issues.

Kylee attended mainstream classes for the first couple of years. Then a school counsellor administered an intelligence test which showed Kylee had a moderate level of cognitive disability.

The headmaster transferred Kylee to a special school without consulting Paula.

In the few years Kylee spent there, her behaviour deteriorated dramatically. She would sweat, move her hands about and wring her hands constantly. She became withdrawn, with severe anxiety and depression.

When Paula asked Kylee what was wrong she wasn’t able to speak about it. Paula told the Royal Commission she suspected Kylee was being sexually abused at school and ‘took her out of there’.

Kylee left school when she was a young teenager.

Many years later, a psychiatrist confirmed Kylee’s behaviours at the time were likely related to sexual abuse and ongoing trauma. More recently, police contacted Paula and advised they’d located the abuser and were considering prosecuting him.

Over the next 20 years there were a series of medical assessments and incorrect diagnoses, including Tourette syndrome, personality disorders and childhood schizophrenia. Doctors prescribed a cocktail of antipsychotic medication causing Kylee to jump around, kick walls and hit Paula. Other times she’d be ‘walking around like a zombie’.

Her family, through all this, was ‘on a merry-go-round’, trying to find answers to the cause of Kylee’s behaviour and get her some help.

Paula believes government policies at the time failed Kylee because ‘no-one wanted to touch the Aboriginal mental health area’.

‘Any Aboriginal person or child with a mental health issue couldn’t move into disability services, they had to stay with DoCS which meant that they never got any help, any support.’

By the time Kylee received help she was in her 30s and no longer able to communicate. With a diagnosis of autism, she was able to access some support.

Paula’s experiences with Aboriginal health services have been disappointing. ‘The rating I’ll give them, one out of 10 … you hardly ever see them.’ At one stage, Paula asked a doctor to come and assess Kylee, however the doctor didn’t attend for the six scheduled sessions they were supposed to. The doctor saw her for the initial consultation and then once a few months later.

Paula said staff need more understanding and awareness of people with disability. ‘They need more training in the area and non-Aboriginal have to be more understanding of Aboriginal people when they come in contact with them.’

In 2017, Kylee acquired ongoing NDIS funding. Paula says the funding has made it easier to get support for Kylee, but ‘again there is lack of understanding of her cultural needs’. The NDIS does not provide support for cultural activities.

Kylee is eligible for specialist disability accommodation with 24/7 support. However, because she’s a First Nations person the NDIA is refusing to fund her.

‘[NDIA] are saying that she can’t have the accommodation, that she needs to stay in Aboriginal housing … Aboriginal housing said they can’t really have her because she needs 24/7 support.’

Paula’s main concern is Kylee will end up in a group home, overmedicated like a zombie. ‘They are setting up [Kylee] for future violence, abuse, neglect,’ Paula said.

‘It’s only just me and [Kylee], you know, and I will support her, but I want to get her set up in her own place and she can have her own garden … I’ll support my daughter right up to the end.’